Faith, Hope and Miracles (18)
Whoever oppresses the poor shows contempt for their Maker, but whoever is kind to the needy honors God. Proverbs 14:31
Teach Simple Love
12.26.16
First and foremost, let's agree to keep politics out of this post. No matter what side of the welfare/work issue you are on, there are still ways to teach simple kindless and love, on a level our kids understand.
Teaching empathy and compassion, and many other things, can take years. I mean, it can take 15 or more years to potty train some of our kids, and that's never even a sure thing! I've read it can take 500+ repitions of a task before it's a habit. So start early and repeat, repeat, repeat.
Just moving around town, we've given food to the folks on the street corners before. We can't even drive past without Jake questioning their sign, their cup for cash or dirty clothing. After seeing his determination and desire to help folks in need, I decided to push a little further this holiday weekend.
As I was packing up our leftover ham from Christmas dinner, I put some into 8 different, little ziploc baggies. We still have about 7 pounds of meat left, it's looks like we barely touched the food. I asked Jake what he wanted to do the next day, and he said "something new and fun". I said, "How 'bout we bring these little bags of ham to hungry friends in DC?" Jake nearly jumped out of his seat with excitement! I was surprised, a little, but my attention quickly shifted to my exploding heart and shortness of breath.
I packed up all the ham (and cheese sticks) and we headed off for downtown. Jake was so excited, he could barely tolerate me wanting to walk over to see the National Christmas tree. We snapped a couple photos, then headed off the tourist-beaten path. Jake must have asked me a zillion times, "where are all the homeless people?" I explained we'd likely find some friends on the side streets. I put the bag of 8 ham-packs and 20 cheese-sticks over my shoulder and off we went. Can't imagine how we smelled when we passed others walking on the sidewalk.
Jake was literally running ahead of me, scanning the streets and train grates. As soon as he'd see a pile of blankets on a bench or warming on the grate, he'd reach into my bag and pull out some ham and piece of cheese. He was brave in approaching on his own and wanted to do it by himself. "Are you hungry? We have Christmas ham. Want some?" Most were hesitant at first, but as I approached I'd often find Jake already in conversation with them. Some turned him down and that's ok too. We'd walk away from all of them with good wishes and a wave. Jake was literally walking 10 inches off the ground.
Skip, jump, fly, squeal, skip, jump, fly squeal.
I was gasping for air in disbelief. This boy wants to serve. To see his excitement in giving and hear him declare, "I'm working for God!" made my heart burst open.
Trust me, I am as surprised as you are! The point here is NOT to toot our own horn, but to remind everyone there are simple and easy ways to teach skills that don't come naturally to our kiddos. Compassion and Empathy are so difficult, they need to be practiced and practiced. You can begin with just a smile.
The meaning of autism comes from the Greek word "autos," which means "self".... he becomes an “isolated self.” However, this definition does not explain how very observant our self-centered kids tend to be. Many may experience a change in their mood or feelings when they see someone sleeping on the street. They can also experience joy in giving and seeing someone else happy. Not every autist will be moved to act spontaneously on the situation they are facing. Demonstrate.
Don't ever lose hope. Create easy opportunities to teach kindness and be the example we want our kids to see. Now more than ever, we need to teach love.
My Fear, Your Fear
7.2.16
It's the topic no one likes to think about, but everyone must. What happens to our kids when we're gone? Will they be okay living on their own? Who will check in on our child-like adult kids to make sure they're eating, washing and taking meds? Will they have friends and/or spouses?
You get the idea. It's that little slice of angst we all carry in our brains.
While this is not news to us Super Hero parents, the part of this that surprised me, was that Jake has the same thoughts! While not always able to articulate these ideas, he thinks about it often, too. I didn't know it until a change in my medical status.
Recently, I received some not-so-great news from a doctor. I called Chris, who was awaiting the MRI results, and he was with Jake.
I told him the news and while he didn't freak out (we've gotten really good at controlling emotions for Jake's sake) his voice did change in tone. Not to a scary tone, but just enough that Super Hero Jake could tell something was up. We talked seriously for a short while more then Jake wanted to talk. He didn't understand any of my and Chris' conversation but the tone is all he needed.
As Chris handed him the phone, he prepped him to "tell mommy something nice and happy."
Jake got on the phone, "Hi Mommy, are you ok?"
I can hear shallow breathing and nervousness in his cracking voice.
Me: "Yes I'm ok. How are you?"
"Well, I heard daddy talking, are you going to die?"
He's almost breathless.
"No I'm not going to d..."
Quickly interrupted with, "because I'm not old enough for you to die. I'm not ready. I'm too young, wait will daddy still be here?"
Then Daddy interjected, "mommy's not going anywhere, she just has a sore back and we need to be super nice."
"AAARE YOU GOING TO THE HOSPITAL?"
Yes he was now almost yelling. He really needed all his questions answered before processing anything else.
"No buddy, I'm not going to the hospital now."
"OK."
The point of all this is, while we struggle oftentimes to see our child's perspective, we share the same worry. Our fears and their fears, even if never discussed.
As scared as we are about being away from our vulnerable kids, for a short amount of time or indefinitely, they are just as scared about being without us.
I know, as teens they can't get far enough away from us and they want their freedom, but they need to know we are there for them always.
It's pretty hard to predict the future, no one knows what will happen in the next ten minutes, but we can surely do everything in our power to take care of ourselves so we live a good long time. If not for ourselves, for the future of our kids.
While you may have never discussed any of this with your kids or you think they are not quite ready to understand it, start thinking towards independence and life after us. They may very well be thinking about it too.
Incidentally, this could be a very good opportunity to discuss questions about faith.
All Needed Pieces Will Fit
2/22/16
The single puzzle piece, in the USA, represents Autism. The pieces come in many different shapes, sizes and colors, with and without varying notches and holes. Some have innies, some have outies. Some have more than one notch and many are asymmetrical.
My dear friend Stacia, a leader in Autism community, has discussed several times how she doesn't like the single puzzle piece as a representation of our children, as it is almost always standing alone. We are social creatures, we need each other.
We also, need many more than just one piece to find our fulfillment, and sometimes it takes many, many people to even put those foundational edge pieces together. Stop for a minute and take inventory of all your pieces! (Some of us are missing a corner piece ;-))
In my opinion, the puzzle piece signifies not just our kids, but all the intricate parts of life. Visualize one piece for food, one piece for friends, one piece for dressing oneself, one for employment, marriage, so on and so forth. All of our children will complete their puzzles, regardless of disability, at their own rate in their own way, with their own pieces.
Some may have already earned the dressing and hygiene pieces, but that social/friendship piece is a difficult fit. Or another may have a slid many academic pieces into place while being unable to shimmy the pincer grasp into place. SO WHAT??? It will come.
None of these children are to be judged and NOT ONE of these families deserve criticism. My reality is not your reality. Our struggles are different than your struggles.
Regardless of abilities, all children develop at different rates and speeds. Some children may be perfectly fulfilled without the marriage piece, cooking piece or algebra piece, and that's OK! To build confident and complete adults, they should be celebrated for what they CAN do and reinforced for always trying new things.
Please don't try to shove the pieces into place, because YOU believe they should be there. Your expected pieces may not fit into someone else's puzzle. Accept the children for where they are and slowly test the waters, one pinky toe at a time. Verbal or not, they will give you a sign if they are ready to work on a new piece. If you force them, that piece could get damaged or frayed.
Recently, we've come under fire by others in the community whose children have different puzzle pieces in place, than our Jake. While Jake's verbal and social pieces may be almost in place, regulation and attention are not quite fitting. We are still working, hard and trusting that all the necessary pieces will fall into place, eventually. Parental patience and understanding though, is paramount.
Don't compare, don't “if only”, don't shoulda, woulda, coulda. That poison will dissolve your puzzle and that fresh glue you've just applied.
Finally, evaluate your own life picture. If your puzzle has pieces that state “comparison, judgement, blame or gossip”, take them out and burn them. You'd be better off with a few holes in your landscape!
12.26.16
First and foremost, let's agree to keep politics out of this post. No matter what side of the welfare/work issue you are on, there are still ways to teach simple kindless and love, on a level our kids understand.
Teaching empathy and compassion, and many other things, can take years. I mean, it can take 15 or more years to potty train some of our kids, and that's never even a sure thing! I've read it can take 500+ repitions of a task before it's a habit. So start early and repeat, repeat, repeat.
Just moving around town, we've given food to the folks on the street corners before. We can't even drive past without Jake questioning their sign, their cup for cash or dirty clothing. After seeing his determination and desire to help folks in need, I decided to push a little further this holiday weekend.
As I was packing up our leftover ham from Christmas dinner, I put some into 8 different, little ziploc baggies. We still have about 7 pounds of meat left, it's looks like we barely touched the food. I asked Jake what he wanted to do the next day, and he said "something new and fun". I said, "How 'bout we bring these little bags of ham to hungry friends in DC?" Jake nearly jumped out of his seat with excitement! I was surprised, a little, but my attention quickly shifted to my exploding heart and shortness of breath.
I packed up all the ham (and cheese sticks) and we headed off for downtown. Jake was so excited, he could barely tolerate me wanting to walk over to see the National Christmas tree. We snapped a couple photos, then headed off the tourist-beaten path. Jake must have asked me a zillion times, "where are all the homeless people?" I explained we'd likely find some friends on the side streets. I put the bag of 8 ham-packs and 20 cheese-sticks over my shoulder and off we went. Can't imagine how we smelled when we passed others walking on the sidewalk.
Jake was literally running ahead of me, scanning the streets and train grates. As soon as he'd see a pile of blankets on a bench or warming on the grate, he'd reach into my bag and pull out some ham and piece of cheese. He was brave in approaching on his own and wanted to do it by himself. "Are you hungry? We have Christmas ham. Want some?" Most were hesitant at first, but as I approached I'd often find Jake already in conversation with them. Some turned him down and that's ok too. We'd walk away from all of them with good wishes and a wave. Jake was literally walking 10 inches off the ground.
Skip, jump, fly, squeal, skip, jump, fly squeal.
I was gasping for air in disbelief. This boy wants to serve. To see his excitement in giving and hear him declare, "I'm working for God!" made my heart burst open.
Trust me, I am as surprised as you are! The point here is NOT to toot our own horn, but to remind everyone there are simple and easy ways to teach skills that don't come naturally to our kiddos. Compassion and Empathy are so difficult, they need to be practiced and practiced. You can begin with just a smile.
The meaning of autism comes from the Greek word "autos," which means "self".... he becomes an “isolated self.” However, this definition does not explain how very observant our self-centered kids tend to be. Many may experience a change in their mood or feelings when they see someone sleeping on the street. They can also experience joy in giving and seeing someone else happy. Not every autist will be moved to act spontaneously on the situation they are facing. Demonstrate.
Don't ever lose hope. Create easy opportunities to teach kindness and be the example we want our kids to see. Now more than ever, we need to teach love.
My Fear, Your Fear
7.2.16
It's the topic no one likes to think about, but everyone must. What happens to our kids when we're gone? Will they be okay living on their own? Who will check in on our child-like adult kids to make sure they're eating, washing and taking meds? Will they have friends and/or spouses?
You get the idea. It's that little slice of angst we all carry in our brains.
While this is not news to us Super Hero parents, the part of this that surprised me, was that Jake has the same thoughts! While not always able to articulate these ideas, he thinks about it often, too. I didn't know it until a change in my medical status.
Recently, I received some not-so-great news from a doctor. I called Chris, who was awaiting the MRI results, and he was with Jake.
I told him the news and while he didn't freak out (we've gotten really good at controlling emotions for Jake's sake) his voice did change in tone. Not to a scary tone, but just enough that Super Hero Jake could tell something was up. We talked seriously for a short while more then Jake wanted to talk. He didn't understand any of my and Chris' conversation but the tone is all he needed.
As Chris handed him the phone, he prepped him to "tell mommy something nice and happy."
Jake got on the phone, "Hi Mommy, are you ok?"
I can hear shallow breathing and nervousness in his cracking voice.
Me: "Yes I'm ok. How are you?"
"Well, I heard daddy talking, are you going to die?"
He's almost breathless.
"No I'm not going to d..."
Quickly interrupted with, "because I'm not old enough for you to die. I'm not ready. I'm too young, wait will daddy still be here?"
Then Daddy interjected, "mommy's not going anywhere, she just has a sore back and we need to be super nice."
"AAARE YOU GOING TO THE HOSPITAL?"
Yes he was now almost yelling. He really needed all his questions answered before processing anything else.
"No buddy, I'm not going to the hospital now."
"OK."
The point of all this is, while we struggle oftentimes to see our child's perspective, we share the same worry. Our fears and their fears, even if never discussed.
As scared as we are about being away from our vulnerable kids, for a short amount of time or indefinitely, they are just as scared about being without us.
I know, as teens they can't get far enough away from us and they want their freedom, but they need to know we are there for them always.
It's pretty hard to predict the future, no one knows what will happen in the next ten minutes, but we can surely do everything in our power to take care of ourselves so we live a good long time. If not for ourselves, for the future of our kids.
While you may have never discussed any of this with your kids or you think they are not quite ready to understand it, start thinking towards independence and life after us. They may very well be thinking about it too.
Incidentally, this could be a very good opportunity to discuss questions about faith.
All Needed Pieces Will Fit
2/22/16
The single puzzle piece, in the USA, represents Autism. The pieces come in many different shapes, sizes and colors, with and without varying notches and holes. Some have innies, some have outies. Some have more than one notch and many are asymmetrical.
My dear friend Stacia, a leader in Autism community, has discussed several times how she doesn't like the single puzzle piece as a representation of our children, as it is almost always standing alone. We are social creatures, we need each other.
We also, need many more than just one piece to find our fulfillment, and sometimes it takes many, many people to even put those foundational edge pieces together. Stop for a minute and take inventory of all your pieces! (Some of us are missing a corner piece ;-))
In my opinion, the puzzle piece signifies not just our kids, but all the intricate parts of life. Visualize one piece for food, one piece for friends, one piece for dressing oneself, one for employment, marriage, so on and so forth. All of our children will complete their puzzles, regardless of disability, at their own rate in their own way, with their own pieces.
Some may have already earned the dressing and hygiene pieces, but that social/friendship piece is a difficult fit. Or another may have a slid many academic pieces into place while being unable to shimmy the pincer grasp into place. SO WHAT??? It will come.
None of these children are to be judged and NOT ONE of these families deserve criticism. My reality is not your reality. Our struggles are different than your struggles.
Regardless of abilities, all children develop at different rates and speeds. Some children may be perfectly fulfilled without the marriage piece, cooking piece or algebra piece, and that's OK! To build confident and complete adults, they should be celebrated for what they CAN do and reinforced for always trying new things.
Please don't try to shove the pieces into place, because YOU believe they should be there. Your expected pieces may not fit into someone else's puzzle. Accept the children for where they are and slowly test the waters, one pinky toe at a time. Verbal or not, they will give you a sign if they are ready to work on a new piece. If you force them, that piece could get damaged or frayed.
Recently, we've come under fire by others in the community whose children have different puzzle pieces in place, than our Jake. While Jake's verbal and social pieces may be almost in place, regulation and attention are not quite fitting. We are still working, hard and trusting that all the necessary pieces will fall into place, eventually. Parental patience and understanding though, is paramount.
Don't compare, don't “if only”, don't shoulda, woulda, coulda. That poison will dissolve your puzzle and that fresh glue you've just applied.
Finally, evaluate your own life picture. If your puzzle has pieces that state “comparison, judgement, blame or gossip”, take them out and burn them. You'd be better off with a few holes in your landscape!
How I Remember the Whackiest Week of Life
10/2/15
The insanity started on Jake's birthday, the Friday before “whacky week'.
Just in time for Jake turning 13, the White House issued its official Press Release announcing Jake and Officer Laurie Reyes as Champions of Change. We had been sitting on this secret for weeks, but not allowed to tell more than family until the release was “released”! By this point in time, by the way, I was dying because I knew we would also be meeting the Pope in the same week.
I was sitting in the Toyota service lounge waiting for them to repair my tire with the nail in it, and change the oil. The spotty wifi was infuriating as I was trying to get work done and could only email out of some accounts. My Yahoo account beeped with the headline, “White House Release” in the subject line. I could feel my throat close, ears get red and hot, and all the blotches come to the surface of my skin.
Glancing around the room, which was totally silent at this point, I made sure no one noticed my gentle hyper-ventilation. At that very moment, the service guy was standing over me to inform me that my car would be two more hours!
Seriously, two hours? I needed to pick up Chris and Jake's suits from getting altered, get to the bank, buy Jake's birthday present, run home and walk the dog to prevent him from an indoor pee-fest and pick up Jake from school. Needless to say, I barked at the poor guy and he promptly delivered a rental car. A rental which I needed a shoe-horn to squeeze my 5'10”-ever-growing-wider frame into and manage to drive.
As the rental guy walked me around the car pointing every scratch and ding, I nodded in agreement, without even engaging. Yeah, yeah, yeah, I gotta go! I raced home, walked my pee-machine, made a couple screaming phone calls to my mom and Officer Laurie, then headed to the suit store.
I picked up the suits, praying they would fit, as I tried to hang them inside this little sports car-type vehicle. I headed like a demon to Home Depot to pick up Jake's birthday present, a 9” raining shower head, and then to Hallmark to put it into a gift-bag with wrinkled and ripped tissue paper stuffed on top. I grabbed a couple bags of candy and cards for Jake's friends who we would be joining for a birthday-pizza party later in the day.
Returning the car 90 minutes later, without replacing my gas, I checked on my car. The guy at the counter was a, well jerk is putting it nicely, as I explained it doesn't take 4 hours to patch a tire and rotate the freaking tires!
He picked up the phone and called the shop. “Well she's here so put it all back together she needs to go!”
“Are they done?”
“Nope. They are just throwing it all back together so it drives!”
OMG... now I was fuming, he could probably see my chest pounding up and down if he bothered to look up for two seconds! I plopped my butt into the waiting room again, started re-reading the unreal press release (for the 20th time) and I saw my service guy. He cheerfully announces my car is done and I'm ready to go. I told him to go make sure the work was actually finished before sending me off. He did and confirmed the work was done. Which even made me more mad about the total jerk pretending to be a manager, I just talked too!
I'm on my way to pick up Jake with his shower head in the back seat. He floated down the stairs at school as he was excited for his pizza party with friends! “There's a surprise!!! What is it? A raaaaaiiiinnniiinnnnnggggg shower head! Awesome! Can I take a shower?”
“Later babe, we are heading to pizza!”
Upon approach at the Pizza place I was trying to stay so cool until the waitress arrived. Officer Laurie, who had heard of Jake's mini-meltdown on Thursday night, was secretly there before us! The waitress handed Jake a huge pizza box with printing on the top for Ambassador Jake! (another surprise)
Inside the box, a beautiful encouraging note written on a blank restaurant check, reminding Jake that Monday was “our day! We've already done the work and Monday is going to be awesome!” I was now crying at the party before I even placed our order. Also in the box, an underarmour compression shirt with the Superman logo and matching wrist bands! Now I'm nearly sobbing the party and still haven't placed my order! Jake was thrilled.
His friends Cam and Rachael and their families arrive and we are stuffing our faces just like any other family having a birthday party. It was so fun, beautiful and memorable! We left, promising another 'play date' with our friends and Jake was soaring after having sat next to Rachael.
Saturday morning, started with the local TV crew at our door at 8am! Diane and crew from WUSA shot and produced the most beautiful story about Jake and his week ahead. The story swirls through the Internet, pretty soon, national stations are calling and the interviews are piling up.
Sunday, thank God was a quiet day. So quiet, in fact, you could probably hear my stomach churning with anticipation about Monday. I purposely kept Sunday open so we could iron shirts, plan outfits and prepare for Monday.
First thing Monday, the anxiety got the best of me. I was not a nice mommy that morning! I regret it and have apologized a few times to my guys. It's the one thing I constantly say to Jake, “it's okay to be stressed but you can't be a jerk.” Well I clearly broke my own rule.
We are finally all dressed, lubed and oiled! Jake had on so much cologne and hair gel my eyes nearly watered at his scent and Chris looked amazing. I do have to add, that I was wearing my favorite new dress and actually had a decent hair day!
As we were walking out the door, another reporter called. I missed her name, but she said she'd meet us at the gate of the White House for an interview before hand. Yeah, whatever. Incidentally, she had no idea about the pending Pope meeting or speech in North Carolina. She only knew about the Champions of Change award.
Driving downtown the stress got the best of me and we needed my new favorite, “scream out”. It's a technique Jake and I started when we are reaching maximum stress capacity. It almost always happens in the car. This was daddy's first experience of our scream out and was a little off!
“Ready,” I said, “1-2-3 scream!”
Jake and I proceed, “AAAAAAAAAHHHHHHHHHHH!” as loud as possible. Jake always plugs his ears when we do it, but when we burst out in laughter in the end he uncovers. This time, though, daddy didn't scream with us. At the end, we hear, “meow,” in a teeny voice come from the back seat! Daddy!!!!!
So Jake and I scream again, and again, daddy continues to add a silly noise at the end. Finally, the last one, Daddy got right. He screamed so loud, my eyeballs bulged! It was such a great release and bonding moment!
We arrived, parked and met the reporter. She interviewed Jake, as best she could, the photog took a selfie with Jake (which I bombed) and we made it through the 3 levels of security required to enter the Old Executive Building on White House Grounds. Badges, scans, dogs and beeps, Oh My!
We met Officer Laurie and other officers in the hallway just minutes before we had to go into the auditorium. We were all so excited and nervous, the conversation ranged from 'do I have lipstick on my teeth?' to 'better inhale some food quick' to 'where are the bathrooms?' (Someone may or may not have taken a picture of the toilet in the WH)
We couldn't bring any water or food into the auditorium, so we all guzzled our water outside the doors. We had to leave our half-full bottles in the hall and keep sneaking out to grab a drink each break time. (One person we were with may or may not have had a swig from the wrong bottle, belonging to a stranger. Ssshhhhh!)
We met officers, officials and other kids being honored. Valerie Jarrett, Pres. Obama's Senior Advisor hugged Jake twice. We met NBA great, Caron Butler and bonded over both being from Wisconsin. We found our seats, which were assigned with name tags. My name tag stated, Jen, Jake's mom. See how easy you lose your identity when you're the mom of a super hero?
We were all led outside, past the west wing of the White House for pictures and press interviews. Chris knew the reporter and photographer doing the pool interviews and received much congratulations. We snuck into the spot next to the live cameras and took selfies and goofies with the White House in the background! I cannot believe I just wrote that... yes it really happened.
We returned back inside and were staged to meet Vice President Biden. Each person was allowed into the room with him, one at a time, and as we entered a staffer read the biography of the person he was meeting. Jake informed him he was the Ambassador of Autism for Montgomery County and he got a hug from Biden. I again, was just Jake's mom, hyper-ventilating in the corner, no introduction.
The ceremony started. Mr. Biden was amazing, and the panel discussion, which Jake and Laurie took part in, took my breath away. Partly because Jake was live on stage in the White House, streaming live across the country, with a microphone! I call that armed and dangerous. I still couldn't believe what was happening.
After panels and pomp, Attorney General Loretta Lynch spoke, introduced each Champion individually and took pictures with the group. Jake was smitten with her and still is. He has talked about her every day since then.
We left that White House, floating to the car, which I couldn't even remember where we parked. It was sprinkling, but we didn't care. We were starving, but didn't care. We were flying and didn't even notice it.
CalTort, here we come!
Tuesday was a rest day. Jake made it to school and I did a Skype interview with my old station in GB, and then a crew for GMA met us at Jake's gym class to talk with us. This was a hard interview as it was over the phone with just a photographer and Jake was pretty tired. I think I pretty much sounded like an idiot during this interview and was pretty nervous for it to be seen nationwide. Thankfully the producer was fabulous and cut my one bite before I looked foolish. And thanks lighting guy, you managed to hide my blotches and dull-en my wrinkles. How'd you make my eyes look like that?
Wednesday was Pope day!
I again woke up, slightly googly, but more calm than Monday. Jake was prepared for me though and was following the rules to the T! He really doesn't like when I'm crabby. Chris was our chauffeur and made sure we made it to the staging area on time, actually early.
Once at the church and checked in, we decided to go inside the chapel and say a few prayers of thanksgiving. This was all well and good, but the woman who was following us was dealing with some troubles of her own. I asked her to leave us alone because she was upsetting Jake, she started screaming at me that she has a degree in special education from Syracuse University.
We found a bench near the front of church and took some breaths. We met our friends and headed to the hall where the rest of our group was gathering. We ate goldfish crackers, drank water and watched the Pope speak at the White House. Jake was pretty nervous here as the level of noise was a low roar of excitement.
While we waited, my phone started to blow up, as the story done by Good Morning America had aired. Friends and family from near and far were messaging and texting.
Once on the bus, things were much quieter as my stomach started doing flips. Are we seriously going to see the Pope? He probably won't come over to us. He's got to be tired. Well, we will see him closer than anyone else. I tried to calm myself and prepare for possible disappointment.
We arrived at the Vatican Embassy and we waited. Some adults sang songs, we did cheers reminiscent of my middle school days, just to pass the time.
“We love Francis, yes we do! We love Francis, how 'bout you?”
The group on the other side of the bushes would answer back at a slightly higher decibel level. You know the drill.
At one point, we had a great chuckle as the high schoolers were singing “Shut up and Dance,” while the group of younger kids was praying the rosary simultaneously! Let me tell you how those rhythms jived... well, they didn't!
After 2.5 hours of standing, the secret service guys begin to stir. Activity picks up and the police cars begin streaming by.
I can no longer hear the grumbling of the stomachs or whiney complaints around me, but I near giddy screams and shrieks as the little Fiat holding the Holy Father pulled into the driveway. He was so tired as he hobbled out of the car, I figured he'd go right inside after his quick blessing from afar. But just then, one girl in our group, who was placed in front of the barricade shortly before the Pope arrived, darted out to hug the Pope.
As soon as he started to follow her over to our group of special needs children, Jake started doing the sign of the cross in the air and shouting, “Come over papa, come over here and give me a special blessing!”
All the hunger pangs were forgotten as the Pope hugged, blessed and touched our children. He raised his hand to bless us and I was seriously weak in the knees and the breath left my chest, literally. I just kept my video rolling as Jake reached out and touched his holy hand. I would later ask Jake what this felt like, and he reported it felt like God. (gasp)
The Pope mingled for one minute and 52 seconds. (I only know that because my video tells me so) and then headed in for a nap. Jake grabbed a blessed rosary from the Pope's helper guys and quickly ran to show the police man who we had made friends with during the 2.5 hour wait. The guy was truly impressed and congratulated Jake.
Back to the bus, back to the church back to Daddy! Chris, who had to stay back as one caregiver was allowed, picked us up and we headed back to his TV station where Jake took part in another TV interview. On NBC News that night!
After the interview, we raced home to eat. Chris had picked us up with pre-ordered Subs in his car, but we were still hungry enough to devour the goods at Red Robin on the way home! During that dinner, Fox news called and asked to use my video.
We all collapsed pretty quickly that night and Jake slept like a rock.
Thursday morning, Jake and I departed for North Carolina. While driving, I still received texts about us appearing on GMA, CNN, NBC, ABC, Fox etc etc etc....
Eight hours on the road and our week-long adrenalin rush was continuing. We marveled at the mountains and had running races at the rest stops. Jake was excited to get to wear his new T-shirt with a Smiling Pile of Pooh on the front with the words “Scratch and Sniff”!!
We arrived at my friends house, but not after a couple trips around the block. Jake was pretty tired and fell asleep quickly while I enjoyed wine with my dear friend, Suzanne.
We learned that Suzanne's husband Bobby is a manager at Home Depot, Jake's favorite place on the Earth. So the next day started with a behind-the-scenes tour of Home Depot and got a new t-shirt and cap!
Jake then nailed his speech in North Carolina with the Rutherford County Police. Joined the sheriff to hand out certificate and pins. Answered questions and
This child humbles me, amazes me, and prides himself on “helping people!”
Beyond proud.
Coming back to reality.
Jake will be training police three more times this month!
Thanks for reading and all the support along the way friends.
Pass the wine and God Bless America!
10/2/15
The insanity started on Jake's birthday, the Friday before “whacky week'.
Just in time for Jake turning 13, the White House issued its official Press Release announcing Jake and Officer Laurie Reyes as Champions of Change. We had been sitting on this secret for weeks, but not allowed to tell more than family until the release was “released”! By this point in time, by the way, I was dying because I knew we would also be meeting the Pope in the same week.
I was sitting in the Toyota service lounge waiting for them to repair my tire with the nail in it, and change the oil. The spotty wifi was infuriating as I was trying to get work done and could only email out of some accounts. My Yahoo account beeped with the headline, “White House Release” in the subject line. I could feel my throat close, ears get red and hot, and all the blotches come to the surface of my skin.
Glancing around the room, which was totally silent at this point, I made sure no one noticed my gentle hyper-ventilation. At that very moment, the service guy was standing over me to inform me that my car would be two more hours!
Seriously, two hours? I needed to pick up Chris and Jake's suits from getting altered, get to the bank, buy Jake's birthday present, run home and walk the dog to prevent him from an indoor pee-fest and pick up Jake from school. Needless to say, I barked at the poor guy and he promptly delivered a rental car. A rental which I needed a shoe-horn to squeeze my 5'10”-ever-growing-wider frame into and manage to drive.
As the rental guy walked me around the car pointing every scratch and ding, I nodded in agreement, without even engaging. Yeah, yeah, yeah, I gotta go! I raced home, walked my pee-machine, made a couple screaming phone calls to my mom and Officer Laurie, then headed to the suit store.
I picked up the suits, praying they would fit, as I tried to hang them inside this little sports car-type vehicle. I headed like a demon to Home Depot to pick up Jake's birthday present, a 9” raining shower head, and then to Hallmark to put it into a gift-bag with wrinkled and ripped tissue paper stuffed on top. I grabbed a couple bags of candy and cards for Jake's friends who we would be joining for a birthday-pizza party later in the day.
Returning the car 90 minutes later, without replacing my gas, I checked on my car. The guy at the counter was a, well jerk is putting it nicely, as I explained it doesn't take 4 hours to patch a tire and rotate the freaking tires!
He picked up the phone and called the shop. “Well she's here so put it all back together she needs to go!”
“Are they done?”
“Nope. They are just throwing it all back together so it drives!”
OMG... now I was fuming, he could probably see my chest pounding up and down if he bothered to look up for two seconds! I plopped my butt into the waiting room again, started re-reading the unreal press release (for the 20th time) and I saw my service guy. He cheerfully announces my car is done and I'm ready to go. I told him to go make sure the work was actually finished before sending me off. He did and confirmed the work was done. Which even made me more mad about the total jerk pretending to be a manager, I just talked too!
I'm on my way to pick up Jake with his shower head in the back seat. He floated down the stairs at school as he was excited for his pizza party with friends! “There's a surprise!!! What is it? A raaaaaiiiinnniiinnnnnggggg shower head! Awesome! Can I take a shower?”
“Later babe, we are heading to pizza!”
Upon approach at the Pizza place I was trying to stay so cool until the waitress arrived. Officer Laurie, who had heard of Jake's mini-meltdown on Thursday night, was secretly there before us! The waitress handed Jake a huge pizza box with printing on the top for Ambassador Jake! (another surprise)
Inside the box, a beautiful encouraging note written on a blank restaurant check, reminding Jake that Monday was “our day! We've already done the work and Monday is going to be awesome!” I was now crying at the party before I even placed our order. Also in the box, an underarmour compression shirt with the Superman logo and matching wrist bands! Now I'm nearly sobbing the party and still haven't placed my order! Jake was thrilled.
His friends Cam and Rachael and their families arrive and we are stuffing our faces just like any other family having a birthday party. It was so fun, beautiful and memorable! We left, promising another 'play date' with our friends and Jake was soaring after having sat next to Rachael.
Saturday morning, started with the local TV crew at our door at 8am! Diane and crew from WUSA shot and produced the most beautiful story about Jake and his week ahead. The story swirls through the Internet, pretty soon, national stations are calling and the interviews are piling up.
Sunday, thank God was a quiet day. So quiet, in fact, you could probably hear my stomach churning with anticipation about Monday. I purposely kept Sunday open so we could iron shirts, plan outfits and prepare for Monday.
First thing Monday, the anxiety got the best of me. I was not a nice mommy that morning! I regret it and have apologized a few times to my guys. It's the one thing I constantly say to Jake, “it's okay to be stressed but you can't be a jerk.” Well I clearly broke my own rule.
We are finally all dressed, lubed and oiled! Jake had on so much cologne and hair gel my eyes nearly watered at his scent and Chris looked amazing. I do have to add, that I was wearing my favorite new dress and actually had a decent hair day!
As we were walking out the door, another reporter called. I missed her name, but she said she'd meet us at the gate of the White House for an interview before hand. Yeah, whatever. Incidentally, she had no idea about the pending Pope meeting or speech in North Carolina. She only knew about the Champions of Change award.
Driving downtown the stress got the best of me and we needed my new favorite, “scream out”. It's a technique Jake and I started when we are reaching maximum stress capacity. It almost always happens in the car. This was daddy's first experience of our scream out and was a little off!
“Ready,” I said, “1-2-3 scream!”
Jake and I proceed, “AAAAAAAAAHHHHHHHHHHH!” as loud as possible. Jake always plugs his ears when we do it, but when we burst out in laughter in the end he uncovers. This time, though, daddy didn't scream with us. At the end, we hear, “meow,” in a teeny voice come from the back seat! Daddy!!!!!
So Jake and I scream again, and again, daddy continues to add a silly noise at the end. Finally, the last one, Daddy got right. He screamed so loud, my eyeballs bulged! It was such a great release and bonding moment!
We arrived, parked and met the reporter. She interviewed Jake, as best she could, the photog took a selfie with Jake (which I bombed) and we made it through the 3 levels of security required to enter the Old Executive Building on White House Grounds. Badges, scans, dogs and beeps, Oh My!
We met Officer Laurie and other officers in the hallway just minutes before we had to go into the auditorium. We were all so excited and nervous, the conversation ranged from 'do I have lipstick on my teeth?' to 'better inhale some food quick' to 'where are the bathrooms?' (Someone may or may not have taken a picture of the toilet in the WH)
We couldn't bring any water or food into the auditorium, so we all guzzled our water outside the doors. We had to leave our half-full bottles in the hall and keep sneaking out to grab a drink each break time. (One person we were with may or may not have had a swig from the wrong bottle, belonging to a stranger. Ssshhhhh!)
We met officers, officials and other kids being honored. Valerie Jarrett, Pres. Obama's Senior Advisor hugged Jake twice. We met NBA great, Caron Butler and bonded over both being from Wisconsin. We found our seats, which were assigned with name tags. My name tag stated, Jen, Jake's mom. See how easy you lose your identity when you're the mom of a super hero?
We were all led outside, past the west wing of the White House for pictures and press interviews. Chris knew the reporter and photographer doing the pool interviews and received much congratulations. We snuck into the spot next to the live cameras and took selfies and goofies with the White House in the background! I cannot believe I just wrote that... yes it really happened.
We returned back inside and were staged to meet Vice President Biden. Each person was allowed into the room with him, one at a time, and as we entered a staffer read the biography of the person he was meeting. Jake informed him he was the Ambassador of Autism for Montgomery County and he got a hug from Biden. I again, was just Jake's mom, hyper-ventilating in the corner, no introduction.
The ceremony started. Mr. Biden was amazing, and the panel discussion, which Jake and Laurie took part in, took my breath away. Partly because Jake was live on stage in the White House, streaming live across the country, with a microphone! I call that armed and dangerous. I still couldn't believe what was happening.
After panels and pomp, Attorney General Loretta Lynch spoke, introduced each Champion individually and took pictures with the group. Jake was smitten with her and still is. He has talked about her every day since then.
We left that White House, floating to the car, which I couldn't even remember where we parked. It was sprinkling, but we didn't care. We were starving, but didn't care. We were flying and didn't even notice it.
CalTort, here we come!
Tuesday was a rest day. Jake made it to school and I did a Skype interview with my old station in GB, and then a crew for GMA met us at Jake's gym class to talk with us. This was a hard interview as it was over the phone with just a photographer and Jake was pretty tired. I think I pretty much sounded like an idiot during this interview and was pretty nervous for it to be seen nationwide. Thankfully the producer was fabulous and cut my one bite before I looked foolish. And thanks lighting guy, you managed to hide my blotches and dull-en my wrinkles. How'd you make my eyes look like that?
Wednesday was Pope day!
I again woke up, slightly googly, but more calm than Monday. Jake was prepared for me though and was following the rules to the T! He really doesn't like when I'm crabby. Chris was our chauffeur and made sure we made it to the staging area on time, actually early.
Once at the church and checked in, we decided to go inside the chapel and say a few prayers of thanksgiving. This was all well and good, but the woman who was following us was dealing with some troubles of her own. I asked her to leave us alone because she was upsetting Jake, she started screaming at me that she has a degree in special education from Syracuse University.
We found a bench near the front of church and took some breaths. We met our friends and headed to the hall where the rest of our group was gathering. We ate goldfish crackers, drank water and watched the Pope speak at the White House. Jake was pretty nervous here as the level of noise was a low roar of excitement.
While we waited, my phone started to blow up, as the story done by Good Morning America had aired. Friends and family from near and far were messaging and texting.
Once on the bus, things were much quieter as my stomach started doing flips. Are we seriously going to see the Pope? He probably won't come over to us. He's got to be tired. Well, we will see him closer than anyone else. I tried to calm myself and prepare for possible disappointment.
We arrived at the Vatican Embassy and we waited. Some adults sang songs, we did cheers reminiscent of my middle school days, just to pass the time.
“We love Francis, yes we do! We love Francis, how 'bout you?”
The group on the other side of the bushes would answer back at a slightly higher decibel level. You know the drill.
At one point, we had a great chuckle as the high schoolers were singing “Shut up and Dance,” while the group of younger kids was praying the rosary simultaneously! Let me tell you how those rhythms jived... well, they didn't!
After 2.5 hours of standing, the secret service guys begin to stir. Activity picks up and the police cars begin streaming by.
I can no longer hear the grumbling of the stomachs or whiney complaints around me, but I near giddy screams and shrieks as the little Fiat holding the Holy Father pulled into the driveway. He was so tired as he hobbled out of the car, I figured he'd go right inside after his quick blessing from afar. But just then, one girl in our group, who was placed in front of the barricade shortly before the Pope arrived, darted out to hug the Pope.
As soon as he started to follow her over to our group of special needs children, Jake started doing the sign of the cross in the air and shouting, “Come over papa, come over here and give me a special blessing!”
All the hunger pangs were forgotten as the Pope hugged, blessed and touched our children. He raised his hand to bless us and I was seriously weak in the knees and the breath left my chest, literally. I just kept my video rolling as Jake reached out and touched his holy hand. I would later ask Jake what this felt like, and he reported it felt like God. (gasp)
The Pope mingled for one minute and 52 seconds. (I only know that because my video tells me so) and then headed in for a nap. Jake grabbed a blessed rosary from the Pope's helper guys and quickly ran to show the police man who we had made friends with during the 2.5 hour wait. The guy was truly impressed and congratulated Jake.
Back to the bus, back to the church back to Daddy! Chris, who had to stay back as one caregiver was allowed, picked us up and we headed back to his TV station where Jake took part in another TV interview. On NBC News that night!
After the interview, we raced home to eat. Chris had picked us up with pre-ordered Subs in his car, but we were still hungry enough to devour the goods at Red Robin on the way home! During that dinner, Fox news called and asked to use my video.
We all collapsed pretty quickly that night and Jake slept like a rock.
Thursday morning, Jake and I departed for North Carolina. While driving, I still received texts about us appearing on GMA, CNN, NBC, ABC, Fox etc etc etc....
Eight hours on the road and our week-long adrenalin rush was continuing. We marveled at the mountains and had running races at the rest stops. Jake was excited to get to wear his new T-shirt with a Smiling Pile of Pooh on the front with the words “Scratch and Sniff”!!
We arrived at my friends house, but not after a couple trips around the block. Jake was pretty tired and fell asleep quickly while I enjoyed wine with my dear friend, Suzanne.
We learned that Suzanne's husband Bobby is a manager at Home Depot, Jake's favorite place on the Earth. So the next day started with a behind-the-scenes tour of Home Depot and got a new t-shirt and cap!
Jake then nailed his speech in North Carolina with the Rutherford County Police. Joined the sheriff to hand out certificate and pins. Answered questions and
This child humbles me, amazes me, and prides himself on “helping people!”
Beyond proud.
Coming back to reality.
Jake will be training police three more times this month!
Thanks for reading and all the support along the way friends.
Pass the wine and God Bless America!
Faith of Our Sons
9/7/14
There’s something to religion and faith; something that many don’t understand now but desperately seek it every week from the pews.
Eyes squeezed shut, hands clasped, and heads bowed, adults and children alike do what they are supposed to do in the hopes of pleasing a higher power. I’m one of those folks, my mind wanders during church then comes back. I feel guilty if someone notices my distant look and click back in to the here and now.
I think focus is one of the hardest things about church for me. I sit there and intrusive thoughts begin;
‘Oh shoot I forgot to pay that bill when is that due?’
‘What are we going to do for lunch?’
‘Please don’t anyone sit in our pew and crowd Jake I don’t have that type of energy today,’
… all flitter in and out of my brain.
It’s rare that I can sit and be engaged doing anything, frankly, for more than 12 minutes.
Again, Jake has shown me up faith-wise this weekend. The bible talks of the “child-like” faith we all strive for, but this child was born with it.
We were in the car this weekend driving up to visit the Grotto of Lourdes north of DC. I like to go to this serene place to reboot my brain and spirituality, especially after an especially hard week. It’s a good ride up the highway so Jake was snoozing.
We put on the classical music and he was out like a light. I’m enjoying the symphony of music and scenery of horses, cows and a random zebra, when my phone rang. It drives me crazy when this happens because it clicks right into my Bluetooth.
Jake stirred a bit but never became fully awake as I pounded the touch-screen so the caller would not be on speaker. It was a friend of a client describing a particularly challenging situation. Jake remained dozing, even snoring at times between the rhythmic beats of a Mozart piece.
I was editing my language as we always do, and he sleepily heard half a conversation in between the music and never let on.
I hung up the call, and proceeded to the turn off the highway. As the car slowed, Jake popped up and pulled his seat into the upright position. “Oh we’re here Mama! I love it here! Mommy’s happy here!” Well that tickled me to no end and I had a brief thought about what a cool kid we have!
Then out of the blue, “Mommy, I think I need to pray for that family you were just talking about.”
Did you just gasp?
I did.
I pulled the car over the side of the road. I needed a minute to catch my breath. What a profound and amazing spontaneous statement from a kid with autism who’s not “supposed” to have faith in something unseen, be compassionate/empathetic, or be more faithful than his so-very-grown-up-mature-in-her-faith-mother!
All I could do was just look at him.
A huge smile came across his face and he started a nervous giggle. He couldn’t read the look on my face, as I thought I was sitting next to Jesus himself. I just kept staring.
I explained to him that what he just said, felt and desired came about from “God talking to his heart.”
We’ve been discussing this a lot lately, as Jake is concerned he can’t “hear” God.
He then asked, “Can I go in the little chapel and cry for them?”
I answered sure and asked why.
He said because it “makes him sad when people don’t have food or a nice house.”
I was nearly in tears as I parked the car and had to sit for another second. I called Chris and immediately told him the story. To hear it out loud it doesn’t even sound real.
He’s 11.
He’s an Autist.
He’s an emotional ball of testosterone.
He’s freakin’ awesome.
We made the trek up the hill to pray in the chapel then he dunked himself in the natural spring water many consider to be holy water. He let it pour over his head and down his back, and was so deliriously happy he was jumping up and down. That’s the spirit folks!
No doubt about it.
9/7/14
There’s something to religion and faith; something that many don’t understand now but desperately seek it every week from the pews.
Eyes squeezed shut, hands clasped, and heads bowed, adults and children alike do what they are supposed to do in the hopes of pleasing a higher power. I’m one of those folks, my mind wanders during church then comes back. I feel guilty if someone notices my distant look and click back in to the here and now.
I think focus is one of the hardest things about church for me. I sit there and intrusive thoughts begin;
‘Oh shoot I forgot to pay that bill when is that due?’
‘What are we going to do for lunch?’
‘Please don’t anyone sit in our pew and crowd Jake I don’t have that type of energy today,’
… all flitter in and out of my brain.
It’s rare that I can sit and be engaged doing anything, frankly, for more than 12 minutes.
Again, Jake has shown me up faith-wise this weekend. The bible talks of the “child-like” faith we all strive for, but this child was born with it.
We were in the car this weekend driving up to visit the Grotto of Lourdes north of DC. I like to go to this serene place to reboot my brain and spirituality, especially after an especially hard week. It’s a good ride up the highway so Jake was snoozing.
We put on the classical music and he was out like a light. I’m enjoying the symphony of music and scenery of horses, cows and a random zebra, when my phone rang. It drives me crazy when this happens because it clicks right into my Bluetooth.
Jake stirred a bit but never became fully awake as I pounded the touch-screen so the caller would not be on speaker. It was a friend of a client describing a particularly challenging situation. Jake remained dozing, even snoring at times between the rhythmic beats of a Mozart piece.
I was editing my language as we always do, and he sleepily heard half a conversation in between the music and never let on.
I hung up the call, and proceeded to the turn off the highway. As the car slowed, Jake popped up and pulled his seat into the upright position. “Oh we’re here Mama! I love it here! Mommy’s happy here!” Well that tickled me to no end and I had a brief thought about what a cool kid we have!
Then out of the blue, “Mommy, I think I need to pray for that family you were just talking about.”
Did you just gasp?
I did.
I pulled the car over the side of the road. I needed a minute to catch my breath. What a profound and amazing spontaneous statement from a kid with autism who’s not “supposed” to have faith in something unseen, be compassionate/empathetic, or be more faithful than his so-very-grown-up-mature-in-her-faith-mother!
All I could do was just look at him.
A huge smile came across his face and he started a nervous giggle. He couldn’t read the look on my face, as I thought I was sitting next to Jesus himself. I just kept staring.
I explained to him that what he just said, felt and desired came about from “God talking to his heart.”
We’ve been discussing this a lot lately, as Jake is concerned he can’t “hear” God.
He then asked, “Can I go in the little chapel and cry for them?”
I answered sure and asked why.
He said because it “makes him sad when people don’t have food or a nice house.”
I was nearly in tears as I parked the car and had to sit for another second. I called Chris and immediately told him the story. To hear it out loud it doesn’t even sound real.
He’s 11.
He’s an Autist.
He’s an emotional ball of testosterone.
He’s freakin’ awesome.
We made the trek up the hill to pray in the chapel then he dunked himself in the natural spring water many consider to be holy water. He let it pour over his head and down his back, and was so deliriously happy he was jumping up and down. That’s the spirit folks!
No doubt about it.
Unintentional Teachers
6/22/14
As I have said all along and will continue to say until I die, our children were put on this earth to teach. Not just ASD kids like mine, but ALL children. They show us our weaknesses, our ability to love deeply and challenge us to be better people all around.
Spectrum kids are no different than other kids in this department, but I think the lessons just come in different order. The first and biggest lesson for ASD parents is patience, followed by lesson #2 more patience, followed by lesson #3 the most patience and if you graduate from lesson #4 you have the patience of Jesus and Divine strength!
Recently, as Jake and I were reading a bed-time bible story the reflection into myself was nearly blinding. I felt like I needed to stop and apologize to the heavens and beg mercy half way through the story.
It started like this: I crack open the book with sturdy pages and water color illustrations for a 5-minute burst of bible greatness. I typically open to the table of contents and let Jake choose any title he’d like. I don’t really care and he can’t really go wrong so it’s a little bit of control he can handle.
He chose the story of The Good Samaratian. We read the book, in case you don’t recall the entire story here’s your thumb nail: A man was walking in the desert and was robbed of all his clothes, food and possessions. He was left in the hot sand alone. A priest came upon the man while on a donkey but was too busy to help. Another man of the cloth came by but was afraid to help this desperate man for fear of getting robbed himself. It finally took a Samaritan, thus the term Good Samaritan, to stop and help the man. He gave him drink, clothing, and dressed his wounds. He took him to an Inn and paid all his money to have this man cared for until he was well enough to return to his journey.
As I read with Jake, we do a lot of discussion after pretty much every sentence. Comprehension is very difficult so I ask lots of questions to make sure it’s all going in. We talked about upholding the most important commandment “Love your neighbor as yourself”, which is the root of the Samaritan story.
During our discussion, I was reflecting back on all those poor folks who beg for money at the intersections. Many hold signs stating their particular hardship, “out of work out of food”, “lost my job have diabetes”, or “give food, please help.”
Every time I see them I am torn. The cynical side of my brain says remember the investigative shows you’ve seen where these guys are all running a business to scam you. The Christian side of my brain is saying, see Jesus and be Jesus to everyone you meet.
Jake always feels uncomfortable when the beggars are walking next to our car holding their hands out and says, “He looked at me and smiled,” or “Where is that guy’s leg?” Every time I tell him not to worry because they likely sleep in the shelter at night and get a meal. But what kind of Samaritan am I? What kind of example is that? Leaving the poor and hungry to be someone else’s problem.
ASD kids are such rule followers and Jake thrives on structure and order. He loves the 10 Commandments and loves the idea that if he follows those rules God will continue to bless his life. So then it happened.
We’re just closing the book on the Good Samaritan story, and through sleepy eyes and barely moving his lips, Jake whispers, “Mommy we should give something to the guy in the street by Arby’s, or the one by school.”
“You are right Jake, that would make God really happy.”
My kid is teaching me lessons and holding me to them every day. If you want to raise a compassionate Samaritan, be a compassionate Samaritan. Be the example you want your children to be.
Jake is the best teacher I’ve ever had and his view of the world is making me a much better person.
6/22/14
As I have said all along and will continue to say until I die, our children were put on this earth to teach. Not just ASD kids like mine, but ALL children. They show us our weaknesses, our ability to love deeply and challenge us to be better people all around.
Spectrum kids are no different than other kids in this department, but I think the lessons just come in different order. The first and biggest lesson for ASD parents is patience, followed by lesson #2 more patience, followed by lesson #3 the most patience and if you graduate from lesson #4 you have the patience of Jesus and Divine strength!
Recently, as Jake and I were reading a bed-time bible story the reflection into myself was nearly blinding. I felt like I needed to stop and apologize to the heavens and beg mercy half way through the story.
It started like this: I crack open the book with sturdy pages and water color illustrations for a 5-minute burst of bible greatness. I typically open to the table of contents and let Jake choose any title he’d like. I don’t really care and he can’t really go wrong so it’s a little bit of control he can handle.
He chose the story of The Good Samaratian. We read the book, in case you don’t recall the entire story here’s your thumb nail: A man was walking in the desert and was robbed of all his clothes, food and possessions. He was left in the hot sand alone. A priest came upon the man while on a donkey but was too busy to help. Another man of the cloth came by but was afraid to help this desperate man for fear of getting robbed himself. It finally took a Samaritan, thus the term Good Samaritan, to stop and help the man. He gave him drink, clothing, and dressed his wounds. He took him to an Inn and paid all his money to have this man cared for until he was well enough to return to his journey.
As I read with Jake, we do a lot of discussion after pretty much every sentence. Comprehension is very difficult so I ask lots of questions to make sure it’s all going in. We talked about upholding the most important commandment “Love your neighbor as yourself”, which is the root of the Samaritan story.
During our discussion, I was reflecting back on all those poor folks who beg for money at the intersections. Many hold signs stating their particular hardship, “out of work out of food”, “lost my job have diabetes”, or “give food, please help.”
Every time I see them I am torn. The cynical side of my brain says remember the investigative shows you’ve seen where these guys are all running a business to scam you. The Christian side of my brain is saying, see Jesus and be Jesus to everyone you meet.
Jake always feels uncomfortable when the beggars are walking next to our car holding their hands out and says, “He looked at me and smiled,” or “Where is that guy’s leg?” Every time I tell him not to worry because they likely sleep in the shelter at night and get a meal. But what kind of Samaritan am I? What kind of example is that? Leaving the poor and hungry to be someone else’s problem.
ASD kids are such rule followers and Jake thrives on structure and order. He loves the 10 Commandments and loves the idea that if he follows those rules God will continue to bless his life. So then it happened.
We’re just closing the book on the Good Samaritan story, and through sleepy eyes and barely moving his lips, Jake whispers, “Mommy we should give something to the guy in the street by Arby’s, or the one by school.”
“You are right Jake, that would make God really happy.”
My kid is teaching me lessons and holding me to them every day. If you want to raise a compassionate Samaritan, be a compassionate Samaritan. Be the example you want your children to be.
Jake is the best teacher I’ve ever had and his view of the world is making me a much better person.
Can I Get a Witness?
4/22/14
The miracle(s) of Easter are alive and well on our spectrum!
Chris and I have always worked to build a solid foundation of confidence, security and faith for Jake. We know his road ahead, as a soon-to-be adult with autism, is going to be challenging to say the least.
We wanted him to know there is a God who created him, created our family for him and loves him very much always. A God who is accessible and near, but with such an abstract idea challenging for most NT adults, the concept is hard. So as with most things, we never really know how much is “sinking in” or “sticking”.
He has memorized all the Commandments; they go nicely with autism, as Super Heroes crave rules and order. He knows the order of the Mass and loves the sign of peace! We pray together every night including our “Thank You God’s”, “I’m sorry God’s” and “God give me happy dreams about….”
I thought that was the extent of it, until Easter weekend.
We attended a friend’s church in a neighboring city, which I’d describe as a Catholic Gospel Mass. They. Rock. Out. I was thrilled to be playing flute for the Mass but worried about where Jake would sit. He can’t sit up near the altar with me and I didn’t think he was ready to sit alone for a long celebration. I was planning to prep him to this new independence at a more familiar, smaller church but there clearly was a bigger plan in store.
I at least tried to get him to sit in the front of church so I could keep an eye on him, but he insisted on sitting in the back of this huge church, “like a grown-up!”
So there he sat about 30 pews away from me, in his favorite pew where we sit every time we make the trek to this church. Dressed in his shirt/tie proudly, I almost choked at the sight of his bold self.
I was curious to see if he could last through without coming up to see me and praying he would be okay if someone sat near him. That’s usually a deal-breaker at any church. I was worried about the collection basket coming around and the line for Communion.
The priest, whom baptized Jake in DC, is now the pastor at this church and making his morning “hello’s” to the parishioners. I see Jake standing in the pew waving to the back of Father’s head. Finally he turned around and their eyes met. A smile and wave were exchanged. Whew... no telling how loud Jake would have yelled if their gazes hadn’t locked!
I kept peeking around the large marble structures blocking my direct view of Jake to see if he was calmly sitting in the pew.
He was on his knees at one point praying. I beamed!
Sitting with his eyes closed. Whew!
Playing with a fidget toy, not bothering anyone around him.
Then, the singer started singing “I Love the Lord”. A gospel song with long drawn out notes and tons of emotion. (Remember how Jake soaks up emotion and multiplies it inside himself)
I hurried to the back of the church to grab the programs for the rest of the choir and Jake was sitting with eyes closed and tears rolling down his cheeks.
So I stop to check on him?
He’s so grown up, doesn’t want Mommy checking in, surely.
I replayed our conversation, “I’ll show you I’m a grown man mommy,” on the way to church.
I wasn’t going to stop, until I saw the tears.
I touched his shoulder gently, he opened his eyes and I couldn’t read the expression on his face. It was one I hadn’t seen before.
“Mommy, THIS song. I really love this song. It’s giving me such happy tears! I feel all funny inside my heart!”
I gasped, unable to find the words to respond. Could he see my heart burst? Could everyone see my heart burst?
This is something I had prayed for our son to feel, ONE DAY! The real presence of God. I wasn’t planning on it happening when he was 11 years old, however!
“I’m so happy for you honey. Feel this, enjoy it, it’s God in your heart!”
“OK, I’m so happy!”
I continued to the back of church to grab the programs and head back up front. I no longer had any fears about him sitting alone. An incredible calm had come over me, witnessing his deep connection to God.
Mass continued and he could hardly contain himself. I kept peeking around the marble pillars to see him dancing, swaying to the music, and scream singing. A couple times I signed to him (ASL) to be careful not to hit the people standing near him and to calm down, but he was filled with the spirit and couldn’t stop! (Miracle 1)
The priest told me at one point that “Jake was having a ball back there”… “he’s in the right section of church if he wants to witness the Lord.” As I looked again, all I saw were his teeth, clapping hands over his head and bee-bopping folks around him.
It’s amazing, when no one is there to calm him; he is in control yet filled with joy! I will never shush him again in church.
He lasted 2.5 hours in church this Easter, when his usual limit is just over an hour. (Miracle 2)
I’ve talked about Jake’s deep faith to other parents of ASD kids and most think I’m nuts, so I’ve stopped. I don’t much like the judgment of my peers, but I cannot keep this a secret and I will shout it from the rooftops!
It is possible for kids on the spectrum to feel the presence of God. Take them into worship places and let them feel the calmness and serenity. Don’t keep the blessings from the children that need to feel the reassuring and loving presence the most.
A deep faith is possible. (Miracle 3)
4/22/14
The miracle(s) of Easter are alive and well on our spectrum!
Chris and I have always worked to build a solid foundation of confidence, security and faith for Jake. We know his road ahead, as a soon-to-be adult with autism, is going to be challenging to say the least.
We wanted him to know there is a God who created him, created our family for him and loves him very much always. A God who is accessible and near, but with such an abstract idea challenging for most NT adults, the concept is hard. So as with most things, we never really know how much is “sinking in” or “sticking”.
He has memorized all the Commandments; they go nicely with autism, as Super Heroes crave rules and order. He knows the order of the Mass and loves the sign of peace! We pray together every night including our “Thank You God’s”, “I’m sorry God’s” and “God give me happy dreams about….”
I thought that was the extent of it, until Easter weekend.
We attended a friend’s church in a neighboring city, which I’d describe as a Catholic Gospel Mass. They. Rock. Out. I was thrilled to be playing flute for the Mass but worried about where Jake would sit. He can’t sit up near the altar with me and I didn’t think he was ready to sit alone for a long celebration. I was planning to prep him to this new independence at a more familiar, smaller church but there clearly was a bigger plan in store.
I at least tried to get him to sit in the front of church so I could keep an eye on him, but he insisted on sitting in the back of this huge church, “like a grown-up!”
So there he sat about 30 pews away from me, in his favorite pew where we sit every time we make the trek to this church. Dressed in his shirt/tie proudly, I almost choked at the sight of his bold self.
I was curious to see if he could last through without coming up to see me and praying he would be okay if someone sat near him. That’s usually a deal-breaker at any church. I was worried about the collection basket coming around and the line for Communion.
The priest, whom baptized Jake in DC, is now the pastor at this church and making his morning “hello’s” to the parishioners. I see Jake standing in the pew waving to the back of Father’s head. Finally he turned around and their eyes met. A smile and wave were exchanged. Whew... no telling how loud Jake would have yelled if their gazes hadn’t locked!
I kept peeking around the large marble structures blocking my direct view of Jake to see if he was calmly sitting in the pew.
He was on his knees at one point praying. I beamed!
Sitting with his eyes closed. Whew!
Playing with a fidget toy, not bothering anyone around him.
Then, the singer started singing “I Love the Lord”. A gospel song with long drawn out notes and tons of emotion. (Remember how Jake soaks up emotion and multiplies it inside himself)
I hurried to the back of the church to grab the programs for the rest of the choir and Jake was sitting with eyes closed and tears rolling down his cheeks.
So I stop to check on him?
He’s so grown up, doesn’t want Mommy checking in, surely.
I replayed our conversation, “I’ll show you I’m a grown man mommy,” on the way to church.
I wasn’t going to stop, until I saw the tears.
I touched his shoulder gently, he opened his eyes and I couldn’t read the expression on his face. It was one I hadn’t seen before.
“Mommy, THIS song. I really love this song. It’s giving me such happy tears! I feel all funny inside my heart!”
I gasped, unable to find the words to respond. Could he see my heart burst? Could everyone see my heart burst?
This is something I had prayed for our son to feel, ONE DAY! The real presence of God. I wasn’t planning on it happening when he was 11 years old, however!
“I’m so happy for you honey. Feel this, enjoy it, it’s God in your heart!”
“OK, I’m so happy!”
I continued to the back of church to grab the programs and head back up front. I no longer had any fears about him sitting alone. An incredible calm had come over me, witnessing his deep connection to God.
Mass continued and he could hardly contain himself. I kept peeking around the marble pillars to see him dancing, swaying to the music, and scream singing. A couple times I signed to him (ASL) to be careful not to hit the people standing near him and to calm down, but he was filled with the spirit and couldn’t stop! (Miracle 1)
The priest told me at one point that “Jake was having a ball back there”… “he’s in the right section of church if he wants to witness the Lord.” As I looked again, all I saw were his teeth, clapping hands over his head and bee-bopping folks around him.
It’s amazing, when no one is there to calm him; he is in control yet filled with joy! I will never shush him again in church.
He lasted 2.5 hours in church this Easter, when his usual limit is just over an hour. (Miracle 2)
I’ve talked about Jake’s deep faith to other parents of ASD kids and most think I’m nuts, so I’ve stopped. I don’t much like the judgment of my peers, but I cannot keep this a secret and I will shout it from the rooftops!
It is possible for kids on the spectrum to feel the presence of God. Take them into worship places and let them feel the calmness and serenity. Don’t keep the blessings from the children that need to feel the reassuring and loving presence the most.
A deep faith is possible. (Miracle 3)
The Purpose of Autism
5/26/2013
As parents we teach.
We teach our children how to eat, how to dress, how to say “please” and “thank you” and do it without expecting much in return.
For parents of spectrum super heroes, eating, dressing and manners may take longer to appear, but they will. One day the kiddos will come tromping down the stairs dressed backwards with yesterday’s dinner dried to their cheeks.
We cheer.
We laugh.
Well, I cry.
I used to say, “I totally don’t care what he wears to school, as long as he dressed himself,” until the one day he came down wearing my bra on his head and my blue silk shirt… ok, that day I cared.
As the kids get older we care a little more about how the public perceives them. If people laugh. If people scoff. If people roll their eyes. My anger bubbles at these behaviors, and my mind wanders.
Not, why me, but Why autism?
How did our Creator see Autism as a blessing to the human race?
What are we to learn?
Our kids are put on this planet to Teach!
The early biblical teachers surely were not perfect. Their many imperfections taught others invaluable lessons on relationships, love, trust and forgiveness.
Jake has taught me love. Not only the love of a mother for her child, but a deeper more profound ability to love all of a person. The strength to accept your child who may not speak, who may not look at you and bristle at your touch. The love heals your broken heart.
Jake has taught me patience. Patience in our house also has many levels. How long have you waited to get ready to leave the house in the morning? Waiting for reciprocated affection. Waiting for him to fall asleep. Waiting for him to button a button.
Patience not to yell. Patience not to get mad when he’s gotten out of bed for the 4th time just as you sit down for the first time in a day. Patience to make his dinner plate so foods don’t touch, share juice or have crispy edges.
Jake has taught me humility. I am humbled at the opportunity to raise this blessed child. His gifts are immeasurable and keep surprising us. I am humbled at his ability to just love everyone, literally everyone, and care about complete strangers. I am humbled by the opportunities being Jake’s mom has provided our family.
Jake has taught me strength. Aside from physical strength to protect myself from rage tantrums, strength to never stop fighting, figuratively. We are strong in our resolve to teach others about autism and its greatness. Strength to not even blink or breathe when any reaction is sure to trigger a massive meltdown. Strength in our marriage to accept and adore our super hero for what he CAN do, not what he can’t or won’t.
Jake has taught me to take care of me. I’ve never focused so much on what I eat, how much I eat, and what foods will give me the most energy. Each day, since Jake requires so much physical exercise – I do too! We drag each other around the neighborhood in the blackness of 5am and celebrate the miles as they tick by.
Jake has taught me determination. I have never felt so determined to educate society about anything else. When I look into Jake’s future, I am more determined than ever to never stop trying to educate and inform anyone who will listen.
Jake has taught me disappointment. I must be honest. There are moments of sadness even when I force myself to see everything positively. Those moments when others judge Jake and his behaviors, disappoints me. When my big 10-year-old struggles to read and insists on carrying toys made for much younger children. Disappointment in myself, for something I may have missed or not tried to help him.
Jake has taught me forgiveness. When raising a super hero you need to learn to forgive society. It’s not always easy, well it’s never easy, but it’s always worth it. Forgive those who stare and glare for they are ignorant. Forgive those who judge, for they will never fill your shoes. Forgive those who just don’t get it. You’ll be rewarded in the end.
Jake has taught me gratitude. I cannot imagine where my life would be without Jake as my teacher. I am thankful for each day he makes it to the bathroom without a messy photo-finish. I am thankful for every day we get through without a meltdown. I am thankful for all the great people on Team Jake who help, guide and nurture us every day. Lastly, I am thankful to God for the amazing opportunity to raise and love such an amazing human. Some days I am just not worthy of this blessing.
Jake has taught me to pray. I used to pray ritualistically, growing up Catholic we have many routines that make up our weekly Mass. I can recite them in my sleep. But I never knew how to pray until I started connecting with God through desperation and gratitude. On my knees, next to his bed, I’d hear answers to my prayers and weep. Jake now asks me to come into his room each night to pray over him.
Jake is by far the coolest, most forgiving, most loving teacher I’ve ever had on Earth. He too gets mad, frustrated and disappointed in his prize pupil but loves me nonetheless. What a tough job these super heroes have to do!
5/26/2013
As parents we teach.
We teach our children how to eat, how to dress, how to say “please” and “thank you” and do it without expecting much in return.
For parents of spectrum super heroes, eating, dressing and manners may take longer to appear, but they will. One day the kiddos will come tromping down the stairs dressed backwards with yesterday’s dinner dried to their cheeks.
We cheer.
We laugh.
Well, I cry.
I used to say, “I totally don’t care what he wears to school, as long as he dressed himself,” until the one day he came down wearing my bra on his head and my blue silk shirt… ok, that day I cared.
As the kids get older we care a little more about how the public perceives them. If people laugh. If people scoff. If people roll their eyes. My anger bubbles at these behaviors, and my mind wanders.
Not, why me, but Why autism?
How did our Creator see Autism as a blessing to the human race?
What are we to learn?
Our kids are put on this planet to Teach!
The early biblical teachers surely were not perfect. Their many imperfections taught others invaluable lessons on relationships, love, trust and forgiveness.
Jake has taught me love. Not only the love of a mother for her child, but a deeper more profound ability to love all of a person. The strength to accept your child who may not speak, who may not look at you and bristle at your touch. The love heals your broken heart.
Jake has taught me patience. Patience in our house also has many levels. How long have you waited to get ready to leave the house in the morning? Waiting for reciprocated affection. Waiting for him to fall asleep. Waiting for him to button a button.
Patience not to yell. Patience not to get mad when he’s gotten out of bed for the 4th time just as you sit down for the first time in a day. Patience to make his dinner plate so foods don’t touch, share juice or have crispy edges.
Jake has taught me humility. I am humbled at the opportunity to raise this blessed child. His gifts are immeasurable and keep surprising us. I am humbled at his ability to just love everyone, literally everyone, and care about complete strangers. I am humbled by the opportunities being Jake’s mom has provided our family.
Jake has taught me strength. Aside from physical strength to protect myself from rage tantrums, strength to never stop fighting, figuratively. We are strong in our resolve to teach others about autism and its greatness. Strength to not even blink or breathe when any reaction is sure to trigger a massive meltdown. Strength in our marriage to accept and adore our super hero for what he CAN do, not what he can’t or won’t.
Jake has taught me to take care of me. I’ve never focused so much on what I eat, how much I eat, and what foods will give me the most energy. Each day, since Jake requires so much physical exercise – I do too! We drag each other around the neighborhood in the blackness of 5am and celebrate the miles as they tick by.
Jake has taught me determination. I have never felt so determined to educate society about anything else. When I look into Jake’s future, I am more determined than ever to never stop trying to educate and inform anyone who will listen.
Jake has taught me disappointment. I must be honest. There are moments of sadness even when I force myself to see everything positively. Those moments when others judge Jake and his behaviors, disappoints me. When my big 10-year-old struggles to read and insists on carrying toys made for much younger children. Disappointment in myself, for something I may have missed or not tried to help him.
Jake has taught me forgiveness. When raising a super hero you need to learn to forgive society. It’s not always easy, well it’s never easy, but it’s always worth it. Forgive those who stare and glare for they are ignorant. Forgive those who judge, for they will never fill your shoes. Forgive those who just don’t get it. You’ll be rewarded in the end.
Jake has taught me gratitude. I cannot imagine where my life would be without Jake as my teacher. I am thankful for each day he makes it to the bathroom without a messy photo-finish. I am thankful for every day we get through without a meltdown. I am thankful for all the great people on Team Jake who help, guide and nurture us every day. Lastly, I am thankful to God for the amazing opportunity to raise and love such an amazing human. Some days I am just not worthy of this blessing.
Jake has taught me to pray. I used to pray ritualistically, growing up Catholic we have many routines that make up our weekly Mass. I can recite them in my sleep. But I never knew how to pray until I started connecting with God through desperation and gratitude. On my knees, next to his bed, I’d hear answers to my prayers and weep. Jake now asks me to come into his room each night to pray over him.
Jake is by far the coolest, most forgiving, most loving teacher I’ve ever had on Earth. He too gets mad, frustrated and disappointed in his prize pupil but loves me nonetheless. What a tough job these super heroes have to do!
--------------------------------------
Sunday "Schooled"
August 26, 2012
AH-HA!!!
I think, maybe, possibly, partially, I sorta, finally figured something out.
Jake. Is. Big. And I. Have. Power.
For the last 6 months I’ve been trying to determine exactly why it’s getting so hard to make it through a church service. Jake has barely missed a weekend mass since birth, until this summer. Mysteriously, the ‘how to behave in church’ lessons have disappeared.
I actually walked out of church early for the first time. Sigh.
No Catholic Guilt Allowed.
Granted, we arrived early, mass started late and after about 90 minutes in the pew I couldn’t take it anymore! To this I attribute many things; partly my boiling disbelief that 9-year-old Jake cannot make it through mass anymore and the realization that he is such a big kiddo he draws more eyes, the stares get longer and disapproving head shakes more personal, more painful.
The invisible different-ability takes its toll, on all of us. People just don’t recognize super heroes and all people judge.
As soon as we sat down, Jake started tearing through his drawing book, usually the only activity he needs to get through the hour (sometimes hour-and-a-half) of praying. He lost interest quickly this Sunday and put the book away before the priest even stepped foot on the altar.
I knew this wasn’t a good sign but quickly pulled out a chewy toy, reviewed his reward for "good church behavior" and started pointing out friends in the choir and sitting near us; an effort to desperately redirect. Soon, Jake was standing and swaying back-n-forth in the bench. People assume when they see an ‘almost-as-big-as-your-mom’ sized kid that he will be able to take part in church without any problems. They don’t see or understand the reasons behind his child-like behaviors. From comments made to me recently, I think many assume that since he’s gotten so big, he’s gotten that much “better.” True and Not True. Triggers remain.
Many young children sway and rock back-and-forth slightly when they stand in church, but when they’re the size of a 3 or 4 year old it’s accepted and overlooked. Jake is 100+ lbs, 5’ tall and very obvious when he’s rocking and swaying. Not to mention the beautiful spins and pirouettes he was performing on the kneeler! I gently corrected and told him people were staring. He generally recognizes when people give him weird looks and doesn’t like it, so it usually works. Not today.
I calmly corrected again, again, and again. Now he’s biting his finger ‘til it bleeds, chewing his nails, and starting to peel skin. All signs of a sure meltdown brewing and the emergence of 'hurricane Jake'. His activity level, was described by the family behind us was “quite enthusiastic”, I smiled and tried to see it that way, but my fuse was burning down and frustration was rising as I tried to figure out what was bugging him.
He’s been able to sit through church, with one break, since he was able to hold his body up. Sure there are times if people sit too close to us, right behind us or say something to him about his behavior he’ll completely fall apart, but we’ve learned and routinely prevent many of those things.
We position ourselves with all potential distractors in mind. We sit in the back. He gets his own short little pew and I sit behind him to block strangers from being in his space. I know his behavior can’t be all a reflection of my growing stress.
Feeling the laser beam eyeballs on my back for an hour or more, I finally caved. I hate giving in like this because I don’t want him to think he “won” this one by acting up, especially if it’s task avoidance. I’d love to make him stay but at what cost? Have all church-goers experience an autistic meltdown? Now that's something to see.
I signed to Jake that we were leaving and was hoping to sneak out without much ado. But Jake knew he was “in for it". He started yelling, “I don’t want to leave, I’ll behave better for God now, mommy!!!” I ignored and headed for the door. Distractions x’s 5!
Oh geez.
I hurriedly handed our envelope to the usher and turned to put the song book back on the shelf when I slipped in a puddle of holy water! God’s trick, I know but regardless… Now I’m on the floor, two ushers run over to help me, and Jake is literally shaking in his shoes.
He panics and runs ahead; I’m up slowly and limping out the door behind him. Once to the car, Jake pulls his usual trick to avoid the impending scolding, “Mommy, let’s listen to your orchestra music, calm down and I’ll sleep!” Neck pillow on, eyes shut, let the fake sleeping (avoiding) commence.
Well there’s no way this little event was going to pass without some sort of conversation, but I don't want to scream. So I took a mile or so to calm down and we stopped at Subway. He ordered his food beautifully, independently and I told him to wash up then we were going to talk about church.
“We’re going to talk about it here? Where? When? What do we have to talk about? Are we going to sit over there? I don’t like CM (crabby mommy) ooohhhh I, I, I, I have to go pee. I have to go pee.. Mommy, my knees are shaking! WOW my knees are really shaking!”
I chuckled to myself as he hobbled away. Really, his knees were shaking? Really??
I frantically texted to Chris the details of what was going on and about my upcoming conversation and he summed up this Sunday's lesson.
God’s punishment is eternal, but it happens later.... Mommy’s punishment is NOW baby!
The wrath of me is apparently worse than the fear of God!
Lesson learned!
Sunday "Schooled"
August 26, 2012
AH-HA!!!
I think, maybe, possibly, partially, I sorta, finally figured something out.
Jake. Is. Big. And I. Have. Power.
For the last 6 months I’ve been trying to determine exactly why it’s getting so hard to make it through a church service. Jake has barely missed a weekend mass since birth, until this summer. Mysteriously, the ‘how to behave in church’ lessons have disappeared.
I actually walked out of church early for the first time. Sigh.
No Catholic Guilt Allowed.
Granted, we arrived early, mass started late and after about 90 minutes in the pew I couldn’t take it anymore! To this I attribute many things; partly my boiling disbelief that 9-year-old Jake cannot make it through mass anymore and the realization that he is such a big kiddo he draws more eyes, the stares get longer and disapproving head shakes more personal, more painful.
The invisible different-ability takes its toll, on all of us. People just don’t recognize super heroes and all people judge.
As soon as we sat down, Jake started tearing through his drawing book, usually the only activity he needs to get through the hour (sometimes hour-and-a-half) of praying. He lost interest quickly this Sunday and put the book away before the priest even stepped foot on the altar.
I knew this wasn’t a good sign but quickly pulled out a chewy toy, reviewed his reward for "good church behavior" and started pointing out friends in the choir and sitting near us; an effort to desperately redirect. Soon, Jake was standing and swaying back-n-forth in the bench. People assume when they see an ‘almost-as-big-as-your-mom’ sized kid that he will be able to take part in church without any problems. They don’t see or understand the reasons behind his child-like behaviors. From comments made to me recently, I think many assume that since he’s gotten so big, he’s gotten that much “better.” True and Not True. Triggers remain.
Many young children sway and rock back-and-forth slightly when they stand in church, but when they’re the size of a 3 or 4 year old it’s accepted and overlooked. Jake is 100+ lbs, 5’ tall and very obvious when he’s rocking and swaying. Not to mention the beautiful spins and pirouettes he was performing on the kneeler! I gently corrected and told him people were staring. He generally recognizes when people give him weird looks and doesn’t like it, so it usually works. Not today.
I calmly corrected again, again, and again. Now he’s biting his finger ‘til it bleeds, chewing his nails, and starting to peel skin. All signs of a sure meltdown brewing and the emergence of 'hurricane Jake'. His activity level, was described by the family behind us was “quite enthusiastic”, I smiled and tried to see it that way, but my fuse was burning down and frustration was rising as I tried to figure out what was bugging him.
He’s been able to sit through church, with one break, since he was able to hold his body up. Sure there are times if people sit too close to us, right behind us or say something to him about his behavior he’ll completely fall apart, but we’ve learned and routinely prevent many of those things.
We position ourselves with all potential distractors in mind. We sit in the back. He gets his own short little pew and I sit behind him to block strangers from being in his space. I know his behavior can’t be all a reflection of my growing stress.
Feeling the laser beam eyeballs on my back for an hour or more, I finally caved. I hate giving in like this because I don’t want him to think he “won” this one by acting up, especially if it’s task avoidance. I’d love to make him stay but at what cost? Have all church-goers experience an autistic meltdown? Now that's something to see.
I signed to Jake that we were leaving and was hoping to sneak out without much ado. But Jake knew he was “in for it". He started yelling, “I don’t want to leave, I’ll behave better for God now, mommy!!!” I ignored and headed for the door. Distractions x’s 5!
Oh geez.
I hurriedly handed our envelope to the usher and turned to put the song book back on the shelf when I slipped in a puddle of holy water! God’s trick, I know but regardless… Now I’m on the floor, two ushers run over to help me, and Jake is literally shaking in his shoes.
He panics and runs ahead; I’m up slowly and limping out the door behind him. Once to the car, Jake pulls his usual trick to avoid the impending scolding, “Mommy, let’s listen to your orchestra music, calm down and I’ll sleep!” Neck pillow on, eyes shut, let the fake sleeping (avoiding) commence.
Well there’s no way this little event was going to pass without some sort of conversation, but I don't want to scream. So I took a mile or so to calm down and we stopped at Subway. He ordered his food beautifully, independently and I told him to wash up then we were going to talk about church.
“We’re going to talk about it here? Where? When? What do we have to talk about? Are we going to sit over there? I don’t like CM (crabby mommy) ooohhhh I, I, I, I have to go pee. I have to go pee.. Mommy, my knees are shaking! WOW my knees are really shaking!”
I chuckled to myself as he hobbled away. Really, his knees were shaking? Really??
I frantically texted to Chris the details of what was going on and about my upcoming conversation and he summed up this Sunday's lesson.
God’s punishment is eternal, but it happens later.... Mommy’s punishment is NOW baby!
The wrath of me is apparently worse than the fear of God!
Lesson learned!
------------------------------------------------
Understanding Emotions
March 13, 2012
Compassion: is a virtue in which the emotional capacities of empathy and sympathy (for the suffering of others) are regarded as a part of love itself, and a cornerstone of greater social interconnection and humanism – foundational to the highest principles in philosophy, society and personhood. -- Wikipedia
Many people struggle with empathy and compassion as typical, successful and educated adults. It’s a virtue and a pipedream for many parents, especially those of Super Heroes. How many books have I read that state: children with autism fail to understand other people’s feelings, cannot put themselves in other people’s shoes and will struggle with interpersonal relationships… let alone picking up on non-verbal social cues.
I don’t want to come across as bragging or boasting, but I believe all children, autistic or not, can and will understand communication and emotion on some level. Whether it’s happiness, sadness or anger, they will see it and they will get it. Do not give up hope and don’t stop practicing. Just make it practical.
About a year ago, we came across a lady at church. I’m pretty sure she is homeless or at least pretty close to it. She’s seen often times standing on the street corner, wrapped in a ton of blankets and an American flag preaching the gospel and praising God!
When we met her, she was slumped over the pew in front of us, covered in so many blankets that we couldn’t even tell if the person was a man or woman. Throughout the Mass, Jake couldn’t stand the mystery, and finally dug through her blankets to shake her hand.
I actually think he woke her up, or at least broke her meditation, and she poked her head out from beneath the battered American flag.
“Hi I’m Jake, what’s your name?”
“I’m JC,” whispered the woman.
Jake instantly looked at me and asked, “Why is she so sad?”
I was stunned. Why did he think she was sad?
“….Because her eyes are so red and down.”
I had no idea so I just said I thought she was tired.
“Yes, Jake, I’m very tired,” she whispered in broken and exhausted voice.
We didn’t see her for many months… Jake would ask periodically then let it go.
Fast forward to this month. We spotted JC again. She was sitting on a bench as we were leaving church, weighted down in the exact same blankets, stooped over her entire life’s possessions in a basket.
Jake stopped in his tracks, “That’s JC! Where have you been?”
She remembered Jake, people tend to never forget him, and she smiled through tears running down her cheeks. I noticed, didn’t mention the tears to Jake, just prompted him to say ‘Have a good day’. He did and we walked out.
Once on the steps of the church, pow, “Why was she crying and wrapped in all those blankets?”
Oh boy.
Catch breath.
“I don’t know honey, maybe she’s cold. I think she might sleep outside.”
“In a really big old house?”
“No buddy, like outside.”
Our church has a ton of homeless friends who take advantage of the dinner program and a warm place to sleep during the winter, so people hanging around outside are really nothing new to Jake. I don’t think it’s ever dawned on him before that these people sleep where they’re standing!
“JC has a really big old house with wood (boarded up) windows?”
“No Jake, I told you I think she sleeps outside.”
Long silence.
“She doesn’t have any money or food? That’s so sad,” he said. “We should help her.”
“Yes, it is really sad,” I said.
As we were walking, we approached the playground and there was another homeless friend lying face down in the mulch. I asked another man with a familiar face if anyone had called an ambulance for him. The man said no, “he’s just sleeping, he’s ok.”
We kept walking to our car.
I’m thinking, don’t ask me why he’s sleeping… don’t ask me, don’t ask me… he’s got enough to think about with JC.
“Why was that man sleeping?”
I honestly had no idea about that answer but I believe God put some ideas in my head. I made something up about how it’s so cold at night that people that live outside need to keep moving to stay warm in the dark. So, when there’s warm sunshine beaming down, they can stop moving and rest.
As we get to the car, Jake was giddy. I was surprised by this reaction and he was jumping up and down. I asked Jake why he was so happy when he was just so sad.
“Wow, mommy I have LOTS of blessings!!”
“Yes you do buddy – I’m glad you finally realized it.” I swear we’ve been telling him this for years but these visual, real-life images finally made it crystal clear.
As we continued to drive home, Jake asked “Will JC go to heaven?”
“She sure will honey.”
“How?”
Well I went on to make it very practical for him. We made a list of the things we’ve seen her doing: going to church, praising God on the street corner, wearing an American flag, praying and being nice to Jake. Then he took it to the next level which astounded me.
“So she has nothing, but still thanks God.”
“YES!!!!!! Can you imagine that?”
“What does she thank Him for?”
I tried to come up with something… uh…. long silence… for being alive, all her possessions she carries with her, for Jesus in her heart, for her church and those people that are nice to her. He totally GOT IT! He proceeded to tell me he wants to make her a card for next time he sees her and bring her his favorite granola bar.
This, my friends is compassion and it’s also Autism! This is a miracle!
Blessings abound!
Understanding Emotions
March 13, 2012
Compassion: is a virtue in which the emotional capacities of empathy and sympathy (for the suffering of others) are regarded as a part of love itself, and a cornerstone of greater social interconnection and humanism – foundational to the highest principles in philosophy, society and personhood. -- Wikipedia
Many people struggle with empathy and compassion as typical, successful and educated adults. It’s a virtue and a pipedream for many parents, especially those of Super Heroes. How many books have I read that state: children with autism fail to understand other people’s feelings, cannot put themselves in other people’s shoes and will struggle with interpersonal relationships… let alone picking up on non-verbal social cues.
I don’t want to come across as bragging or boasting, but I believe all children, autistic or not, can and will understand communication and emotion on some level. Whether it’s happiness, sadness or anger, they will see it and they will get it. Do not give up hope and don’t stop practicing. Just make it practical.
About a year ago, we came across a lady at church. I’m pretty sure she is homeless or at least pretty close to it. She’s seen often times standing on the street corner, wrapped in a ton of blankets and an American flag preaching the gospel and praising God!
When we met her, she was slumped over the pew in front of us, covered in so many blankets that we couldn’t even tell if the person was a man or woman. Throughout the Mass, Jake couldn’t stand the mystery, and finally dug through her blankets to shake her hand.
I actually think he woke her up, or at least broke her meditation, and she poked her head out from beneath the battered American flag.
“Hi I’m Jake, what’s your name?”
“I’m JC,” whispered the woman.
Jake instantly looked at me and asked, “Why is she so sad?”
I was stunned. Why did he think she was sad?
“….Because her eyes are so red and down.”
I had no idea so I just said I thought she was tired.
“Yes, Jake, I’m very tired,” she whispered in broken and exhausted voice.
We didn’t see her for many months… Jake would ask periodically then let it go.
Fast forward to this month. We spotted JC again. She was sitting on a bench as we were leaving church, weighted down in the exact same blankets, stooped over her entire life’s possessions in a basket.
Jake stopped in his tracks, “That’s JC! Where have you been?”
She remembered Jake, people tend to never forget him, and she smiled through tears running down her cheeks. I noticed, didn’t mention the tears to Jake, just prompted him to say ‘Have a good day’. He did and we walked out.
Once on the steps of the church, pow, “Why was she crying and wrapped in all those blankets?”
Oh boy.
Catch breath.
“I don’t know honey, maybe she’s cold. I think she might sleep outside.”
“In a really big old house?”
“No buddy, like outside.”
Our church has a ton of homeless friends who take advantage of the dinner program and a warm place to sleep during the winter, so people hanging around outside are really nothing new to Jake. I don’t think it’s ever dawned on him before that these people sleep where they’re standing!
“JC has a really big old house with wood (boarded up) windows?”
“No Jake, I told you I think she sleeps outside.”
Long silence.
“She doesn’t have any money or food? That’s so sad,” he said. “We should help her.”
“Yes, it is really sad,” I said.
As we were walking, we approached the playground and there was another homeless friend lying face down in the mulch. I asked another man with a familiar face if anyone had called an ambulance for him. The man said no, “he’s just sleeping, he’s ok.”
We kept walking to our car.
I’m thinking, don’t ask me why he’s sleeping… don’t ask me, don’t ask me… he’s got enough to think about with JC.
“Why was that man sleeping?”
I honestly had no idea about that answer but I believe God put some ideas in my head. I made something up about how it’s so cold at night that people that live outside need to keep moving to stay warm in the dark. So, when there’s warm sunshine beaming down, they can stop moving and rest.
As we get to the car, Jake was giddy. I was surprised by this reaction and he was jumping up and down. I asked Jake why he was so happy when he was just so sad.
“Wow, mommy I have LOTS of blessings!!”
“Yes you do buddy – I’m glad you finally realized it.” I swear we’ve been telling him this for years but these visual, real-life images finally made it crystal clear.
As we continued to drive home, Jake asked “Will JC go to heaven?”
“She sure will honey.”
“How?”
Well I went on to make it very practical for him. We made a list of the things we’ve seen her doing: going to church, praising God on the street corner, wearing an American flag, praying and being nice to Jake. Then he took it to the next level which astounded me.
“So she has nothing, but still thanks God.”
“YES!!!!!! Can you imagine that?”
“What does she thank Him for?”
I tried to come up with something… uh…. long silence… for being alive, all her possessions she carries with her, for Jesus in her heart, for her church and those people that are nice to her. He totally GOT IT! He proceeded to tell me he wants to make her a card for next time he sees her and bring her his favorite granola bar.
This, my friends is compassion and it’s also Autism! This is a miracle!
Blessings abound!
----------------------------------------
Overwhelming Support
January 31, 2012
You’ve heard the saying, “it takes a village to raise a child.” There is a lot of truth to that, but if it takes a village to raise a child, it very well could take an entire state to raise a Super Hero! When push comes to shove, (and I’m on the end of the shove) I am amazed at how friends, old and new, are reaching out to our family.
There are so many people in this world who care about Jake, it takes my breath away. As we are struggling with growing pains at school I don’t go to bed any night feeling totally alone. Lonely maybe, but not alone. All I have to do is pick up the phone. That is the most reassuring and comforting feeling for all of us.
Friends like DBR have offered to give up two days out of her busy media schedule to come and help with Jake. V & V sent out messages that they can be at my house in a moment’s notice if and when Jake is getting out of control. SC, world’s best babysitter, is amazing, firm and dedicated. She works entirely too much, but will drag herself to our house in the middle of the night to help us get a glimpse of sanity. Friends I haven’t seen in ages are coming forward, Bless you.
Jake’s favorite playmate and our favorite family friend “Sunday M” is our rock. M, whom I met when he was my boss 10 years ago, has been building me up, giving me breaks, and playing with Jake literally since the day our super hero came home. He carries the prestigious title of ‘first non-family member pooped on’ and it was love at first sight! He is our gift from God and would do anything for Jake. He plays a mean trumpet, but you should hear him sing/scream in the garage with Jake.
Church provides many pieces to the mosaic of our lives as well. Gramma A, nearing 90 years old over-fills a crucial double-role. She is my spiritual hero and voluntarily worked with Jake for years to prepare him for his First Communion. She listens to me cry and whine all the while silently praying for peace and faith for our family. Jake adores her and nearly tackles her at church with hugs and kisses.
Ms. L is now volunteering to take on the role of Catechist for Jake and has also been there for us since the beginning. Our families adopted kids at virtually the same time and L provides huge amounts of encouragement for us. She has gone above and beyond to connect, communicate and care deeply for Jake. L, know you are a cherished stable force for us.
CL and EH offer such steady support through little gestures, texts, Chinese dinner nights and thoughtful loving gifts for Jake. Our lives would be so boring without you. Some days I think Jake was put on this earth to give poor EH a heart attack, but that’s a purpose. Jake is fascinated with the inner workings of C’s piano at church. So it never fails, when the choir is singing a beautiful meditative piece, Jake approaches the baby grand and sticks his head practically inside. All the while, poor E is in the choir singing his lungs out while holding his breath watching Jake teetering near the piano. Trust me, I'm holding my breath too E!
Our lovely neighbors, the “F family”, accepted Jake from day 1. The family that filled our homes with gifts before Jake even arrived continues to build him up and rescue me. B + M (parents) adore Jake and the kids (H & C) are his fierce protectors. If other neighbors are being mean or making fun of Jake the kids will step up and tell them to go home. Not many 13 and 10 year-olds have that kind of integrity and guts. Recently, they’ve taken to playing basketball on Saturday mornings, taking Jake without me, to hit the courts. That’s amazing and truly a gift.
My favorite story about the kids next door illustrates their purity and free hearts. One day, Jake was 7, while driving with their mom in the van they were discussing playing and Jake’s name came up. B explained to them that Jake was adopted and they fell completely silent. They were shocked to learn that Jake was adopted!!! They had no idea!! In a world that’s so quick to judge blended families, I will never forget this one! Beautiful.
BF, JF, BS, and CN (all neighbors) take turns checking on me especially if Chris is away. There are not many night’s I have time to wallow. One recent night around 10pm, I actually sent a text message to neighbor, JF, stating I was having a bad day and was very thirsty. Ten minutes later she was at my door in her PJ’s during a driving rain storm with a bottle tucked under her jacket.
J and S F, while dealing with their own exhausting and challenging life journey, blow me away with overwhelming continued love and generosity. RS listens to me gripe all Wednesday night on the way to orchestra rehearsal, never judging, never a negative word, always supporting. You cannot buy support and friendship like that. You are so loved, I don’t know how to repay you.
There are three teachers outside of school, I must mention for their patience, dedication and determination with Jake. DYR, TB, and AN. The terrific trifecta teaches Jake art, swimming and academics respectively. Not only do they give me respite but they have witnessed all the gifts Jake has and appreciate him for the things he is ABLE to do, not his shortcomings. I know I could call any of them at any time to be rescued. Our lives would not be complete without you.
During times of crisis, like, um, sort of now, friends from the past, teacher co-workers (JL, DH, SB, LM), as well as people from afar amaze us with offers to help, encouragement and comfort (SMP and SS). Your gestures of kindness keep me going.
People I was friends with when I was 9 don’t need to be sending me links to ground breaking new autism research, but they do. Former co-workers from decades ago don’t need to send me private messages of encouragement, but they do. Other moms of super heroes, who already have their plates full, (SB, ALK, JSM, RA, JC, CS, MW) don’t have time to reach out to our family, but I’ve been blessed with lunch, conversation, voicemails and offers to help in any way they can. CH what a joy you were today.
So our awesome immediate family aside, my poor sisters and mom have heard enough tear-filled frustrated phone calls, we have the best extended family and TEAM JAKE, hands down. From our amazing classroom teacher to our priests to our counselors (PB, JW) to Jake's teen playmate ML and doctors, I know God put each and every one of you in our lives for a reason and feel blessed every day.
Please know it is difficult to accept ALL the help, yes my own issues of unworthiness aside, but we could not make it without our VILLAGE. If you’re reading this and you don’t have understanding friends and family, send me an email and I’ll gladly return the favor. No one should climb the mountain of Autism alone. And most importantly, don’t stop fighting for our kids!
Overwhelming Support
January 31, 2012
You’ve heard the saying, “it takes a village to raise a child.” There is a lot of truth to that, but if it takes a village to raise a child, it very well could take an entire state to raise a Super Hero! When push comes to shove, (and I’m on the end of the shove) I am amazed at how friends, old and new, are reaching out to our family.
There are so many people in this world who care about Jake, it takes my breath away. As we are struggling with growing pains at school I don’t go to bed any night feeling totally alone. Lonely maybe, but not alone. All I have to do is pick up the phone. That is the most reassuring and comforting feeling for all of us.
Friends like DBR have offered to give up two days out of her busy media schedule to come and help with Jake. V & V sent out messages that they can be at my house in a moment’s notice if and when Jake is getting out of control. SC, world’s best babysitter, is amazing, firm and dedicated. She works entirely too much, but will drag herself to our house in the middle of the night to help us get a glimpse of sanity. Friends I haven’t seen in ages are coming forward, Bless you.
Jake’s favorite playmate and our favorite family friend “Sunday M” is our rock. M, whom I met when he was my boss 10 years ago, has been building me up, giving me breaks, and playing with Jake literally since the day our super hero came home. He carries the prestigious title of ‘first non-family member pooped on’ and it was love at first sight! He is our gift from God and would do anything for Jake. He plays a mean trumpet, but you should hear him sing/scream in the garage with Jake.
Church provides many pieces to the mosaic of our lives as well. Gramma A, nearing 90 years old over-fills a crucial double-role. She is my spiritual hero and voluntarily worked with Jake for years to prepare him for his First Communion. She listens to me cry and whine all the while silently praying for peace and faith for our family. Jake adores her and nearly tackles her at church with hugs and kisses.
Ms. L is now volunteering to take on the role of Catechist for Jake and has also been there for us since the beginning. Our families adopted kids at virtually the same time and L provides huge amounts of encouragement for us. She has gone above and beyond to connect, communicate and care deeply for Jake. L, know you are a cherished stable force for us.
CL and EH offer such steady support through little gestures, texts, Chinese dinner nights and thoughtful loving gifts for Jake. Our lives would be so boring without you. Some days I think Jake was put on this earth to give poor EH a heart attack, but that’s a purpose. Jake is fascinated with the inner workings of C’s piano at church. So it never fails, when the choir is singing a beautiful meditative piece, Jake approaches the baby grand and sticks his head practically inside. All the while, poor E is in the choir singing his lungs out while holding his breath watching Jake teetering near the piano. Trust me, I'm holding my breath too E!
Our lovely neighbors, the “F family”, accepted Jake from day 1. The family that filled our homes with gifts before Jake even arrived continues to build him up and rescue me. B + M (parents) adore Jake and the kids (H & C) are his fierce protectors. If other neighbors are being mean or making fun of Jake the kids will step up and tell them to go home. Not many 13 and 10 year-olds have that kind of integrity and guts. Recently, they’ve taken to playing basketball on Saturday mornings, taking Jake without me, to hit the courts. That’s amazing and truly a gift.
My favorite story about the kids next door illustrates their purity and free hearts. One day, Jake was 7, while driving with their mom in the van they were discussing playing and Jake’s name came up. B explained to them that Jake was adopted and they fell completely silent. They were shocked to learn that Jake was adopted!!! They had no idea!! In a world that’s so quick to judge blended families, I will never forget this one! Beautiful.
BF, JF, BS, and CN (all neighbors) take turns checking on me especially if Chris is away. There are not many night’s I have time to wallow. One recent night around 10pm, I actually sent a text message to neighbor, JF, stating I was having a bad day and was very thirsty. Ten minutes later she was at my door in her PJ’s during a driving rain storm with a bottle tucked under her jacket.
J and S F, while dealing with their own exhausting and challenging life journey, blow me away with overwhelming continued love and generosity. RS listens to me gripe all Wednesday night on the way to orchestra rehearsal, never judging, never a negative word, always supporting. You cannot buy support and friendship like that. You are so loved, I don’t know how to repay you.
There are three teachers outside of school, I must mention for their patience, dedication and determination with Jake. DYR, TB, and AN. The terrific trifecta teaches Jake art, swimming and academics respectively. Not only do they give me respite but they have witnessed all the gifts Jake has and appreciate him for the things he is ABLE to do, not his shortcomings. I know I could call any of them at any time to be rescued. Our lives would not be complete without you.
During times of crisis, like, um, sort of now, friends from the past, teacher co-workers (JL, DH, SB, LM), as well as people from afar amaze us with offers to help, encouragement and comfort (SMP and SS). Your gestures of kindness keep me going.
People I was friends with when I was 9 don’t need to be sending me links to ground breaking new autism research, but they do. Former co-workers from decades ago don’t need to send me private messages of encouragement, but they do. Other moms of super heroes, who already have their plates full, (SB, ALK, JSM, RA, JC, CS, MW) don’t have time to reach out to our family, but I’ve been blessed with lunch, conversation, voicemails and offers to help in any way they can. CH what a joy you were today.
So our awesome immediate family aside, my poor sisters and mom have heard enough tear-filled frustrated phone calls, we have the best extended family and TEAM JAKE, hands down. From our amazing classroom teacher to our priests to our counselors (PB, JW) to Jake's teen playmate ML and doctors, I know God put each and every one of you in our lives for a reason and feel blessed every day.
Please know it is difficult to accept ALL the help, yes my own issues of unworthiness aside, but we could not make it without our VILLAGE. If you’re reading this and you don’t have understanding friends and family, send me an email and I’ll gladly return the favor. No one should climb the mountain of Autism alone. And most importantly, don’t stop fighting for our kids!
---------------------------------------------------
Fear Factor: The Future
June 5, 2012
What scares you?
Spiders? Snakes? Heights? Your parents moving in?
Now, have you ever thought about what scares your kid? Could be little things like flashing lights, sudden noises or zooming cars. I know how much you try to explain away and make logical those things to ease your child’s fears. I’ve been there and still am time and time again.
However, last night’s dinner conversation went straight to the heart and rendered me speechless, again. It’s not the first time Jake has brought up the grown-up topic of heaven and dying, but this time there was a renewed fear in his eyes.
Since Jake’s grandmother passed on last month, the reality of death has become very real for all of us, especially him. Complicating things is that with many spectrum kids, whenever they hear something negative, they get stuck. Paralyzed: they perseverate, stress and worry. Every conversation, even if we’re talking about sunshine, kitties and rainbows comes back to said topic, death and heaven.
Jake’s most recent search for serenity was much more direct and debilitating.
“Mommy, when are you going to heaven to see Grandma Bubbette?”
“I don’t know honey, I’m not planning on it anytime soon,” I said sans emotion as much as I could.
“Well when you go to heaven, I need to go to. I can’t be without my mommy,” hearing tension rise in his voice. “Can I come with you, right?”
“Oh honey, hopefully you’ll be an old man when God decides to call me up.”
“If God calls you up I have to be hugely-super-duper-old. Okay, mommy, will you tell God that for me okay?”
“Alright.”
Sigh.
I don’t know how many more times I can do this conversation. He’s living with my biggest fear. As a parent of a child on the spectrum, the “what happens when he’s older and we’re gone” is a constant strain on my brain and pain in my heart. The fact that Jake is an only child, the youngest of all the far-away cousins, makes it even harder.
I’m trying not to sound like I’m whining here but Jake’s realization that once people go to heaven they don’t ever come back, is now tangible for all of us. No matter how amazing we've made heaven out to be for him, how positive we’re trying to keep it, the fear is obviously occupying a large part of his brain.
The intrusive thoughts, perseveration or OCD, whatever you want to call it, are front and center in this Super Hero’s mind. Not so much that he cannot function, but to point where he needs constant reassurance, that I’m not going anywhere soon. We will be here for him.
How do I comfort him when I don’t know the answers? Responding to his questions with the three worst words to tell a Super Hero “I don’t know”, just stokes the fear-filled flames.
[If mommy and daddy don’t know, who does? If teachers and therapists don’t know, who does? Why doesn’t anyone know this answer – I need to feel control. I am not happy without control.]
I know the future is something all parents think about for their children. Will Billy be a doctor or a lawyer or a chef? Will he call his sister Martha just to chat when I’m gone? Will Margaret be a school teacher? But think about it once if Billy, Martha or Margaret had a disability.
The questions change. The answers become more desperate. How will we provide for the future? Will our child with autism be capable of living alone? What if his roommate snores? Will there be enough Medicaid/Medicare to help with his enormous medical bills? Will he be able to keep a job? How on earth will our Super Hero go to college? Who will take care of them like we do; remembering his meds, his milestones and melatonin? Bigger questions – tougher answers.
I like to think that I know Jake pretty well. Some days I know what he’s going to do before he does. But I can’t imagine walking a day in his shoes, carrying his fear of a lonely future, without the two people who know him best. So we plan now and prepare for his upcoming years, just in case.
Skills that signal independence take on new urgency and necessity. Self-care, clear communication and cool confidence are not just attributes but basic building blocks of his life. We’re building an extended familiar family for him with friends, doctors and our biggest supporters in hopes of never having to use them as guardians.
How do I survive? I have to keep reminding myself what my sister-in-law Annette once told me. She’s the mother of a 40-something disabled child… “God doesn’t take away parents of kids like ours!” That’s how I get through each and every day! HE knew what he was doing when HE made us Jake’s parents.
Facing an extremely exciting and exhausting future with our Super Hero. Can’t wait to see what he’ll accomplish.
Fear Factor: The Future
June 5, 2012
What scares you?
Spiders? Snakes? Heights? Your parents moving in?
Now, have you ever thought about what scares your kid? Could be little things like flashing lights, sudden noises or zooming cars. I know how much you try to explain away and make logical those things to ease your child’s fears. I’ve been there and still am time and time again.
However, last night’s dinner conversation went straight to the heart and rendered me speechless, again. It’s not the first time Jake has brought up the grown-up topic of heaven and dying, but this time there was a renewed fear in his eyes.
Since Jake’s grandmother passed on last month, the reality of death has become very real for all of us, especially him. Complicating things is that with many spectrum kids, whenever they hear something negative, they get stuck. Paralyzed: they perseverate, stress and worry. Every conversation, even if we’re talking about sunshine, kitties and rainbows comes back to said topic, death and heaven.
Jake’s most recent search for serenity was much more direct and debilitating.
“Mommy, when are you going to heaven to see Grandma Bubbette?”
“I don’t know honey, I’m not planning on it anytime soon,” I said sans emotion as much as I could.
“Well when you go to heaven, I need to go to. I can’t be without my mommy,” hearing tension rise in his voice. “Can I come with you, right?”
“Oh honey, hopefully you’ll be an old man when God decides to call me up.”
“If God calls you up I have to be hugely-super-duper-old. Okay, mommy, will you tell God that for me okay?”
“Alright.”
Sigh.
I don’t know how many more times I can do this conversation. He’s living with my biggest fear. As a parent of a child on the spectrum, the “what happens when he’s older and we’re gone” is a constant strain on my brain and pain in my heart. The fact that Jake is an only child, the youngest of all the far-away cousins, makes it even harder.
I’m trying not to sound like I’m whining here but Jake’s realization that once people go to heaven they don’t ever come back, is now tangible for all of us. No matter how amazing we've made heaven out to be for him, how positive we’re trying to keep it, the fear is obviously occupying a large part of his brain.
The intrusive thoughts, perseveration or OCD, whatever you want to call it, are front and center in this Super Hero’s mind. Not so much that he cannot function, but to point where he needs constant reassurance, that I’m not going anywhere soon. We will be here for him.
How do I comfort him when I don’t know the answers? Responding to his questions with the three worst words to tell a Super Hero “I don’t know”, just stokes the fear-filled flames.
[If mommy and daddy don’t know, who does? If teachers and therapists don’t know, who does? Why doesn’t anyone know this answer – I need to feel control. I am not happy without control.]
I know the future is something all parents think about for their children. Will Billy be a doctor or a lawyer or a chef? Will he call his sister Martha just to chat when I’m gone? Will Margaret be a school teacher? But think about it once if Billy, Martha or Margaret had a disability.
The questions change. The answers become more desperate. How will we provide for the future? Will our child with autism be capable of living alone? What if his roommate snores? Will there be enough Medicaid/Medicare to help with his enormous medical bills? Will he be able to keep a job? How on earth will our Super Hero go to college? Who will take care of them like we do; remembering his meds, his milestones and melatonin? Bigger questions – tougher answers.
I like to think that I know Jake pretty well. Some days I know what he’s going to do before he does. But I can’t imagine walking a day in his shoes, carrying his fear of a lonely future, without the two people who know him best. So we plan now and prepare for his upcoming years, just in case.
Skills that signal independence take on new urgency and necessity. Self-care, clear communication and cool confidence are not just attributes but basic building blocks of his life. We’re building an extended familiar family for him with friends, doctors and our biggest supporters in hopes of never having to use them as guardians.
How do I survive? I have to keep reminding myself what my sister-in-law Annette once told me. She’s the mother of a 40-something disabled child… “God doesn’t take away parents of kids like ours!” That’s how I get through each and every day! HE knew what he was doing when HE made us Jake’s parents.
Facing an extremely exciting and exhausting future with our Super Hero. Can’t wait to see what he’ll accomplish.
------------------------------------------------------
Stress-free and Fabulous
May 9, 2012
As my husband likes to remind me, if I don’t have something to worry about, I am lost. Well not this time baby, I know exactly where I am. Look up! I’m floating about 20 feet off the ground!!
For the first time in 18 months, I don’t hurt.
My heart doesn’t hurt.
My head doesn’t hurt.
My stomach doesn’t hurt.
I need to be clear right off the top that I am, in no way, meaning to disrespect any schools Jake has attended in the past. I know the public school teachers loved Jake very much, they worked hard for him during our time enrolled, but there’s only so much one can do when the resources just aren’t there.
Since we received a more appropriate placement, I can breathe!
I smile more.
I laugh A LOT!
I’m no longer terrified when I put Jake on the bus. I don’t have a ‘bat-phone’ ring tone for calls from the school and behavior sheets with big X’s and sad faces no longer appear in the backpack. It’s an amazing feeling to know our Super Hero is safe once again, his mind is open and HE is LEARNING!
There have been no phone calls, no soiled pants and no incident reports.
In the past few weeks, Jake’s vocabulary has doubled, he’s earned more than $30.00 in behavior points and purchased the coveted Mercedes Benz model from the school store, and we have fallen into a new routine.
5:30am wake up/get dressed
6:00am eat breakfast/make lunch
6:45am bike/scooter ride
7:10am bus picks up
3:15pm bus drops off/eat supper
3:45pm homework
4:15pm Ipod / Sesame Street
5:00pm shower
5:30pm bed w/20 mins of orchestra music on sleep timer
LIFE IS SO GOOD.
Don’t get me wrong, it was a treacherous and painful road to get here, but as one mom said during today’s teacher appreciation luncheon, once you enter the doors of this school… we have reached our OZ! The children are respected and accepted, staff members study the IEP and devise a plan before kids even arrive at the school, and communication is easy between parents and all staff members.
The other day Jake came home and announced his “staff” is so happy with him!! I chuckled to myself at his use of the word “staff” but he’s totally right. The private school has the resources and personnel to be proactive with our kiddos and offer opportunities we never knew existed.
He currently has TWO 1:1’s (am/pm), a classroom teacher, a social worker, an occupational therapist, speech therapist, art therapist, math teacher, science teacher, music teacher, health/PE teacher, curriculum specialist (who’s very involved with all students) and is on first name basis with the principal and other coordinators.
So, ok, I guess he has a staff!
I feel like we also have a staff. Emails are answered, study guides are sent home daily, and we even received 5 chapters of material covered in health class before we arrived at the school. Communication flows between the school social workers and our behaviorist and psychiatrist.
It is a dream. Do not wake me.
All student behavior is managed on an intensive point system with breaks earned after every half hour of instruction. Jake practices basketball and plays catch outside up to 12 times a day for following his individualized rules. In the past, there have never been enough people to handle the sensory/physical needs Jake requires to be successful.
When I received an email asking to help with a staff appreciation luncheon today, I was ready to foot the entire bill. Really, just a luncheon? All of the parents in attendance agreed we should spoil these teachers monthly. This placement has given us HOPE again!!
I no longer cry after putting Jake on the school bus, I’ve gained back the weight I lost from 5 months of not being able to eat a thing, and I don’t know what to do with myself! Jake pops up in the morning eager to go to school and can’t wait to start the day.
Granted, I may still have tons of grays earned from the last 2 years of school, but I’ll keep them. I worked very hard for each and every one!
I hope all of you reading this get to a place where you feel the support of a specialized program. Our kids have very special and mysterious gifts which need to be discovered and nutured in order for them to thrive and succeed.
Stress-free and Fabulous
May 9, 2012
As my husband likes to remind me, if I don’t have something to worry about, I am lost. Well not this time baby, I know exactly where I am. Look up! I’m floating about 20 feet off the ground!!
For the first time in 18 months, I don’t hurt.
My heart doesn’t hurt.
My head doesn’t hurt.
My stomach doesn’t hurt.
I need to be clear right off the top that I am, in no way, meaning to disrespect any schools Jake has attended in the past. I know the public school teachers loved Jake very much, they worked hard for him during our time enrolled, but there’s only so much one can do when the resources just aren’t there.
Since we received a more appropriate placement, I can breathe!
I smile more.
I laugh A LOT!
I’m no longer terrified when I put Jake on the bus. I don’t have a ‘bat-phone’ ring tone for calls from the school and behavior sheets with big X’s and sad faces no longer appear in the backpack. It’s an amazing feeling to know our Super Hero is safe once again, his mind is open and HE is LEARNING!
There have been no phone calls, no soiled pants and no incident reports.
In the past few weeks, Jake’s vocabulary has doubled, he’s earned more than $30.00 in behavior points and purchased the coveted Mercedes Benz model from the school store, and we have fallen into a new routine.
5:30am wake up/get dressed
6:00am eat breakfast/make lunch
6:45am bike/scooter ride
7:10am bus picks up
3:15pm bus drops off/eat supper
3:45pm homework
4:15pm Ipod / Sesame Street
5:00pm shower
5:30pm bed w/20 mins of orchestra music on sleep timer
LIFE IS SO GOOD.
Don’t get me wrong, it was a treacherous and painful road to get here, but as one mom said during today’s teacher appreciation luncheon, once you enter the doors of this school… we have reached our OZ! The children are respected and accepted, staff members study the IEP and devise a plan before kids even arrive at the school, and communication is easy between parents and all staff members.
The other day Jake came home and announced his “staff” is so happy with him!! I chuckled to myself at his use of the word “staff” but he’s totally right. The private school has the resources and personnel to be proactive with our kiddos and offer opportunities we never knew existed.
He currently has TWO 1:1’s (am/pm), a classroom teacher, a social worker, an occupational therapist, speech therapist, art therapist, math teacher, science teacher, music teacher, health/PE teacher, curriculum specialist (who’s very involved with all students) and is on first name basis with the principal and other coordinators.
So, ok, I guess he has a staff!
I feel like we also have a staff. Emails are answered, study guides are sent home daily, and we even received 5 chapters of material covered in health class before we arrived at the school. Communication flows between the school social workers and our behaviorist and psychiatrist.
It is a dream. Do not wake me.
All student behavior is managed on an intensive point system with breaks earned after every half hour of instruction. Jake practices basketball and plays catch outside up to 12 times a day for following his individualized rules. In the past, there have never been enough people to handle the sensory/physical needs Jake requires to be successful.
When I received an email asking to help with a staff appreciation luncheon today, I was ready to foot the entire bill. Really, just a luncheon? All of the parents in attendance agreed we should spoil these teachers monthly. This placement has given us HOPE again!!
I no longer cry after putting Jake on the school bus, I’ve gained back the weight I lost from 5 months of not being able to eat a thing, and I don’t know what to do with myself! Jake pops up in the morning eager to go to school and can’t wait to start the day.
Granted, I may still have tons of grays earned from the last 2 years of school, but I’ll keep them. I worked very hard for each and every one!
I hope all of you reading this get to a place where you feel the support of a specialized program. Our kids have very special and mysterious gifts which need to be discovered and nutured in order for them to thrive and succeed.
-----------------------------------------
Autism Opens Doors
February 19, 2012
Trains.
If you have / or know a Super Hero there’s a very good chance you’ve ridden, watched, or have been nearly hit by one. We’ve stood for hours waiting for them, counted them and climbed on them too.
They’re long: providing a fabulous view – very pleasing perspective to the Super Hero’s eye.
They’re predictable: stay on the track, all cars are attached at the same distance from one another and move at a steady speed.
Sensory: they make great sounds and those spinning wheels at ground level, whoo hoo. If you get close enough your guts gurgle as they zoom by. That’s what I call “stim city” AKA heaven on earth.
They’re highly perseverative: Predictable + Sensory = Comfort. They go on and on and on and on and don’t ever change.
So now you’re not surprised that trains are a huge hit with children who have Autism. When they’re little they line them up, car after car across the carpet, when they're toddlers they climb on them and ride open-top toddler trains through parks… but when they’re big the obsession pushes full steam ahead.
Currently, our favorite daddy day activity is to get on the Metro and ride to a stop, sometimes planned sometimes random, get out and see what is there. Chris and Jake do this most because I cannot stand it, but it’s apparently a blast. It’s also made Jake quite an expert on the ins and outs of the Metro system. Yay independence some day!
He knows which stops he likes, which car to choose during what time of day and how long the trains will be depending on rush hour etc… remember he doesn't forget a thing.
Fast forward to our trip to the Subway today (totally no pun intended).
We enter the store same as any other day. There are a few that we frequent so the people usually start getting Jake’s sandwich ready before we even open the door. Regardless, we make him greet the worker, and very carefully ask for his same yet desired “Subway melt on wheat with extra bacon please!”
At this particular store Jake spots a huge guy ahead of us in line wearing a Metro baseball cap and dark blue coveralls. He can barely squelch his excitement.
“Do you think he drives the train mommy?”
“I don’t know Jake, he could just work for Metro.”
“Can I ask him?”
I was thrilled with this question, because we’ve been trying to drill stranger danger into his head for years, but this child will walk up to anyone anywhere and strike up a conversation, believing he now has a new best friend.
I told him to at least wait until the guy pays for his food and gets settled. Now Jake is literally jumping out of his shoes with excitement and he bombards the 6’ + dude at the soda machine. The woman behind the counter was so into ‘what Jake was going to do next’ she never even took my order. She held her breath as did I, watching Jake stretch up to tap this giant guy on the shoulder while he’s trying to fill his drink.
“UUmmmm excuse me… do you drive, (do a little nervous dance) um do you work for, (quick look to me for reassurance) trains? Do you drive the Red line Metro train? I LOVE THE RED LINE TRAINS!!!”
Now I’m just praying the guy says it’s his brother's cap and he has nothing to do with Metro because I so knew what was coming next.
And cue the WRONG answer.
“No I don't drive I work in maintenance,” the guy said while smiling back over his shoulder at me. He was having to stoop down to reach the soda fountain so it was an awkward movement which almost caused him to spill his drink. He bobbled, Jake stepped back and he regained his position.
Now all the customers (6 maybe) are listening to this conversation, because Jake’s quiet voice is like me screaming.
“Mom, what’s mannt-ten-nance?”
“Oh, that means he does repairs for Metro. Can I order a sandwich?”
“That’s right,” he answered proudly, while getting situated at a nearby table, which looked like a Barbie’s playhouse table for his tall stature.
Hello, can of worms. Darn it.
Ready.
Aim.
Fire.
ONE GIANT SENTENCE.
“Oh you fix things? Do you know that the elevator at the Cleveland Park Metro doesn’t work? When are you going to fix the elevator there? I think it needs new wheels because it doesn’t go up and down very well, or maybe the weights are off, and when there’s a lot of people there it can be bad cuz everyone just stands in the way. And will you make the elevator at Vanness all glass all around even outside? The 2nd car when you get on at the Shady Grove Red line stop has a light out down by the doors. All the other lights work, except the one on the bottom. Do all the fire alarms work? How many wheels do you need to fix on the escalators?”
The dude’s now sitting down, (sort of trying to ignore Jake) and just about to take a bite of his Sub ooozzzing with mayonnaise when his mouth fell open and he looked at his co-worker. His partner, dressed in bright orange, almost split a gut laughing so hard he set his sandwich down, sat back in his chair and just stared at Jake.
These poor guys who were just trying to eat lunch were just totally schooled by a 9 year old about how and where they need to do their job. They both looked at me, eyes darting to Jake and back, with puzzled looks.
UUmmmm searching for words and my debit card….
“He really likes Metro and memorizes everything,” total nervous giggle, is all I could come up with. Yes I was totally batting my baby blues to try and sneak out of this very awkward situation. I had no idea how they were going to react.
“Can I help you fix all those elevators and escalators?” was Jake’s parting shot as I was literally shoving him out the door.
“Sure, in about 10 years I’ll be ready to retire and you can have my job!” yelled the partner sitting at the table.
Little do they know, that would be a dream come true.
Dooo Duuuu, doors opening. Please step back. Doors opening.
Autism Opens Doors
February 19, 2012
Trains.
If you have / or know a Super Hero there’s a very good chance you’ve ridden, watched, or have been nearly hit by one. We’ve stood for hours waiting for them, counted them and climbed on them too.
They’re long: providing a fabulous view – very pleasing perspective to the Super Hero’s eye.
They’re predictable: stay on the track, all cars are attached at the same distance from one another and move at a steady speed.
Sensory: they make great sounds and those spinning wheels at ground level, whoo hoo. If you get close enough your guts gurgle as they zoom by. That’s what I call “stim city” AKA heaven on earth.
They’re highly perseverative: Predictable + Sensory = Comfort. They go on and on and on and on and don’t ever change.
So now you’re not surprised that trains are a huge hit with children who have Autism. When they’re little they line them up, car after car across the carpet, when they're toddlers they climb on them and ride open-top toddler trains through parks… but when they’re big the obsession pushes full steam ahead.
Currently, our favorite daddy day activity is to get on the Metro and ride to a stop, sometimes planned sometimes random, get out and see what is there. Chris and Jake do this most because I cannot stand it, but it’s apparently a blast. It’s also made Jake quite an expert on the ins and outs of the Metro system. Yay independence some day!
He knows which stops he likes, which car to choose during what time of day and how long the trains will be depending on rush hour etc… remember he doesn't forget a thing.
Fast forward to our trip to the Subway today (totally no pun intended).
We enter the store same as any other day. There are a few that we frequent so the people usually start getting Jake’s sandwich ready before we even open the door. Regardless, we make him greet the worker, and very carefully ask for his same yet desired “Subway melt on wheat with extra bacon please!”
At this particular store Jake spots a huge guy ahead of us in line wearing a Metro baseball cap and dark blue coveralls. He can barely squelch his excitement.
“Do you think he drives the train mommy?”
“I don’t know Jake, he could just work for Metro.”
“Can I ask him?”
I was thrilled with this question, because we’ve been trying to drill stranger danger into his head for years, but this child will walk up to anyone anywhere and strike up a conversation, believing he now has a new best friend.
I told him to at least wait until the guy pays for his food and gets settled. Now Jake is literally jumping out of his shoes with excitement and he bombards the 6’ + dude at the soda machine. The woman behind the counter was so into ‘what Jake was going to do next’ she never even took my order. She held her breath as did I, watching Jake stretch up to tap this giant guy on the shoulder while he’s trying to fill his drink.
“UUmmmm excuse me… do you drive, (do a little nervous dance) um do you work for, (quick look to me for reassurance) trains? Do you drive the Red line Metro train? I LOVE THE RED LINE TRAINS!!!”
Now I’m just praying the guy says it’s his brother's cap and he has nothing to do with Metro because I so knew what was coming next.
And cue the WRONG answer.
“No I don't drive I work in maintenance,” the guy said while smiling back over his shoulder at me. He was having to stoop down to reach the soda fountain so it was an awkward movement which almost caused him to spill his drink. He bobbled, Jake stepped back and he regained his position.
Now all the customers (6 maybe) are listening to this conversation, because Jake’s quiet voice is like me screaming.
“Mom, what’s mannt-ten-nance?”
“Oh, that means he does repairs for Metro. Can I order a sandwich?”
“That’s right,” he answered proudly, while getting situated at a nearby table, which looked like a Barbie’s playhouse table for his tall stature.
Hello, can of worms. Darn it.
Ready.
Aim.
Fire.
ONE GIANT SENTENCE.
“Oh you fix things? Do you know that the elevator at the Cleveland Park Metro doesn’t work? When are you going to fix the elevator there? I think it needs new wheels because it doesn’t go up and down very well, or maybe the weights are off, and when there’s a lot of people there it can be bad cuz everyone just stands in the way. And will you make the elevator at Vanness all glass all around even outside? The 2nd car when you get on at the Shady Grove Red line stop has a light out down by the doors. All the other lights work, except the one on the bottom. Do all the fire alarms work? How many wheels do you need to fix on the escalators?”
The dude’s now sitting down, (sort of trying to ignore Jake) and just about to take a bite of his Sub ooozzzing with mayonnaise when his mouth fell open and he looked at his co-worker. His partner, dressed in bright orange, almost split a gut laughing so hard he set his sandwich down, sat back in his chair and just stared at Jake.
These poor guys who were just trying to eat lunch were just totally schooled by a 9 year old about how and where they need to do their job. They both looked at me, eyes darting to Jake and back, with puzzled looks.
UUmmmm searching for words and my debit card….
“He really likes Metro and memorizes everything,” total nervous giggle, is all I could come up with. Yes I was totally batting my baby blues to try and sneak out of this very awkward situation. I had no idea how they were going to react.
“Can I help you fix all those elevators and escalators?” was Jake’s parting shot as I was literally shoving him out the door.
“Sure, in about 10 years I’ll be ready to retire and you can have my job!” yelled the partner sitting at the table.
Little do they know, that would be a dream come true.
Dooo Duuuu, doors opening. Please step back. Doors opening.
---------------------------------------------
Spectrum of Blessings
November 25, 2011
It’s so easy to get lost in life. Parents of differently-abled children can fall effortlessly into the ‘poor me’ state of depression and not even realize how it happened.
But it does. Living the same life, fighting the same battles, and explaining your kids’ repetitive behavior can take a toll on even the strongest of parents. The looks, the comments and the judgment hurt.
DO NOT GO THERE!
This may sound cliché, but this is the time of year we're reminded to reflect on our riches. No matter how exhausted you are, realize and count your challenged child among them. Even though there are growing numbers of families like ours, all our blessings are unique. Every Super-powered kiddo is a GIFT and is GIFTED in his/her own way.
We used to let Jake’s spinning, running and amusement-park-ride-imitations drive us crazy, but we had to make a conscious effort to see the positive in his behaviors. The spinning, the running and the wildly flapping arm movements he calls the “Orbiter” all serve a purpose. EVERY behavior has a purpose. So instead of getting embarrassed or irritated by these activities, we found the wisdom to understand them. Jake’s self-awareness and ability to realize his engine was “running fast” is a blessing.
The chemical cocktail Jake takes twice daily could also be seen as something other than a blessing, unless you look deeper. Yes, once you start down the prescription path, you’ll likely be there for the long haul. But look at it this way: at least there are pills that can help your child cope, feel comfort and control his body. Without the meds we would still be unable to sit in a chair, stay to a task and would likely be living a very violent existence. Meds make life livable. Swallowy, Chewy and Melty are blessings too.
I am thankful for my awesome marriage. We are determined NOT to end up in that 85% of divorced families of Super heroes, but honestly it hasn’t been difficult to stay with Chris. The humor in our marriage could be viewed as sarcasm and craziness, but think about it – it’s a coping skill. If one cannot see the hilarious side of surviving on the spectrum, you are missing out. Super heroes are blessings.
Finally, I would not be where I am without support from family, doctors/teachers and friends. There are some who know if they don’t hear from me in a few days they need to call and check in. Others can tell by how I answer the phone if I’m losing my mind. So blessed that we have people we can vent to, drink with and cry to over the phone without judgment. It takes a while to find these friends, your circles will change, but once you do, hold on to them and don’t let go.
I have to share a conversation I had with my mom just today. She had the wisdom to remind me that Jake was put here by God, for many reasons, and how bored we’d be with any other kid. HA. We laughed and laughed as we imagined His Holiness perched in a big velvet chair, arms folded, laughing his head off. “Maybe I’ll give her another grey hair, watch this!” we joked while picturing Him chuckling with delight as Jake runs me in circles, drives me to the edge and leaves me in tears.
We also laughed about all my planning! God says, “Look, there she goes planning again! We’ll just have to change that too!” Tears were now rolling down my face as my mom says, “Yeah, and stop trying to plan for 10 years down the road too."
AAAHHHHH
OUCH!
She’s right. (And no, mom, I will not say it again!)
Life is a blessing, challenged or not. Enjoy your hero EVERY day!
Spectrum of Blessings
November 25, 2011
It’s so easy to get lost in life. Parents of differently-abled children can fall effortlessly into the ‘poor me’ state of depression and not even realize how it happened.
But it does. Living the same life, fighting the same battles, and explaining your kids’ repetitive behavior can take a toll on even the strongest of parents. The looks, the comments and the judgment hurt.
DO NOT GO THERE!
This may sound cliché, but this is the time of year we're reminded to reflect on our riches. No matter how exhausted you are, realize and count your challenged child among them. Even though there are growing numbers of families like ours, all our blessings are unique. Every Super-powered kiddo is a GIFT and is GIFTED in his/her own way.
We used to let Jake’s spinning, running and amusement-park-ride-imitations drive us crazy, but we had to make a conscious effort to see the positive in his behaviors. The spinning, the running and the wildly flapping arm movements he calls the “Orbiter” all serve a purpose. EVERY behavior has a purpose. So instead of getting embarrassed or irritated by these activities, we found the wisdom to understand them. Jake’s self-awareness and ability to realize his engine was “running fast” is a blessing.
The chemical cocktail Jake takes twice daily could also be seen as something other than a blessing, unless you look deeper. Yes, once you start down the prescription path, you’ll likely be there for the long haul. But look at it this way: at least there are pills that can help your child cope, feel comfort and control his body. Without the meds we would still be unable to sit in a chair, stay to a task and would likely be living a very violent existence. Meds make life livable. Swallowy, Chewy and Melty are blessings too.
I am thankful for my awesome marriage. We are determined NOT to end up in that 85% of divorced families of Super heroes, but honestly it hasn’t been difficult to stay with Chris. The humor in our marriage could be viewed as sarcasm and craziness, but think about it – it’s a coping skill. If one cannot see the hilarious side of surviving on the spectrum, you are missing out. Super heroes are blessings.
Finally, I would not be where I am without support from family, doctors/teachers and friends. There are some who know if they don’t hear from me in a few days they need to call and check in. Others can tell by how I answer the phone if I’m losing my mind. So blessed that we have people we can vent to, drink with and cry to over the phone without judgment. It takes a while to find these friends, your circles will change, but once you do, hold on to them and don’t let go.
I have to share a conversation I had with my mom just today. She had the wisdom to remind me that Jake was put here by God, for many reasons, and how bored we’d be with any other kid. HA. We laughed and laughed as we imagined His Holiness perched in a big velvet chair, arms folded, laughing his head off. “Maybe I’ll give her another grey hair, watch this!” we joked while picturing Him chuckling with delight as Jake runs me in circles, drives me to the edge and leaves me in tears.
We also laughed about all my planning! God says, “Look, there she goes planning again! We’ll just have to change that too!” Tears were now rolling down my face as my mom says, “Yeah, and stop trying to plan for 10 years down the road too."
AAAHHHHH
OUCH!
She’s right. (And no, mom, I will not say it again!)
Life is a blessing, challenged or not. Enjoy your hero EVERY day!
--------------------------------------------------
Exhaustion, Perception and Acceptance: A Conversation in my head
November 8, 2011
You are your child’s voice. Even if your Super hero can talk, it’s up to you to get them the services they need to be successful. One of my biggest fears as a parent of a child with autism is: what does the future hold? Will he live at home forever? Will he have a job? How can we get him to be happy and stay healthy?
What is success? For some, it’s having a good job and making a lot of money. Others look for routine and schedules with glee, while some just want their kids to be safe and calm. I can tell you, our definition of success changes as we see Jake grow and regress and then grow some more.
We’re currently in the midst of a very hard time with our Super hero; as he develops, new symptoms surface. He swishes effortlessly and unpredictably back ‘n forth between old self-stim behaviors we haven’t seen in years to brilliant thoughts and sentences with all pistons are firing.
A recent realization for me is: I think part of the problem and frustration with his behavior is MY perception. When is pushing too much? Are my expectations too high? Should we let up when we see regression – knowing that every behavior serves a purpose?
What’s the purpose of self-stimulatory behavior? To calm his body, meaning something is not right in his world.
Why is his body running so high? Anxiety controls his every move.
Why is he hitting? Why is he fitting? Why is he wetting?
Temple Grandin, world famous Autistic entrepreneur, explained at a recent presentation that you cannot punish a child who is acting out from sensory overstimulation. Beside the fact that typical punishment techniques don’t work for Super heroes, HE CANNOT HELP IT. His body is preventing him from processing the situation like you or I would. Accept it.
Our own acceptance of our beautifully-blessed child is spawning a funny oxy-moron. No matter how much we want our child to fit-in with peers, I hate "typical kid" behaviors! Why do we push our square Super heroes to fit into those round holes?
I love that Jake doesn’t even really understand what a lie is. I’m learning to love his elevators and escalators. I love that he kisses my mouth with his soft squishy crumb-carrying lips anywhere, anytime and he’s 9! (Is that weird?) I love that he thinks I’m pretty. I also love that he allows me into his own quirky, intense and very intelligent interpretation of life.
We pray for acceptance yet want to run from “normal”. Without Jake’s awesome sense of humor and behaviors that make us crazy, he wouldn’t be OUR Jake. The amazing kid that can stop slot machines on straight 7’s repeatedly, run 2 miles without breaking a sweat, take pictures with his eyes then recreate them on his IPod, map my cross-country route after travelling it once and charm the pants off the grouchiest, most judgmental adults.
So while I’m exhausted (mentally/emotionally) on a daily basis, I will never stop fighting for every service Jake needs to find his own success. Not mine, not Chris’ and not yours.
A new school is in our future. New teachers. New bus. New friends. New fears.
We will not stop.
Exhaustion, Perception and Acceptance: A Conversation in my head
November 8, 2011
You are your child’s voice. Even if your Super hero can talk, it’s up to you to get them the services they need to be successful. One of my biggest fears as a parent of a child with autism is: what does the future hold? Will he live at home forever? Will he have a job? How can we get him to be happy and stay healthy?
What is success? For some, it’s having a good job and making a lot of money. Others look for routine and schedules with glee, while some just want their kids to be safe and calm. I can tell you, our definition of success changes as we see Jake grow and regress and then grow some more.
We’re currently in the midst of a very hard time with our Super hero; as he develops, new symptoms surface. He swishes effortlessly and unpredictably back ‘n forth between old self-stim behaviors we haven’t seen in years to brilliant thoughts and sentences with all pistons are firing.
A recent realization for me is: I think part of the problem and frustration with his behavior is MY perception. When is pushing too much? Are my expectations too high? Should we let up when we see regression – knowing that every behavior serves a purpose?
What’s the purpose of self-stimulatory behavior? To calm his body, meaning something is not right in his world.
Why is his body running so high? Anxiety controls his every move.
Why is he hitting? Why is he fitting? Why is he wetting?
Temple Grandin, world famous Autistic entrepreneur, explained at a recent presentation that you cannot punish a child who is acting out from sensory overstimulation. Beside the fact that typical punishment techniques don’t work for Super heroes, HE CANNOT HELP IT. His body is preventing him from processing the situation like you or I would. Accept it.
Our own acceptance of our beautifully-blessed child is spawning a funny oxy-moron. No matter how much we want our child to fit-in with peers, I hate "typical kid" behaviors! Why do we push our square Super heroes to fit into those round holes?
I love that Jake doesn’t even really understand what a lie is. I’m learning to love his elevators and escalators. I love that he kisses my mouth with his soft squishy crumb-carrying lips anywhere, anytime and he’s 9! (Is that weird?) I love that he thinks I’m pretty. I also love that he allows me into his own quirky, intense and very intelligent interpretation of life.
We pray for acceptance yet want to run from “normal”. Without Jake’s awesome sense of humor and behaviors that make us crazy, he wouldn’t be OUR Jake. The amazing kid that can stop slot machines on straight 7’s repeatedly, run 2 miles without breaking a sweat, take pictures with his eyes then recreate them on his IPod, map my cross-country route after travelling it once and charm the pants off the grouchiest, most judgmental adults.
So while I’m exhausted (mentally/emotionally) on a daily basis, I will never stop fighting for every service Jake needs to find his own success. Not mine, not Chris’ and not yours.
A new school is in our future. New teachers. New bus. New friends. New fears.
We will not stop.
-----------------------------------------
Be Miracle Minded
April 24, 2011
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle.” Albert Einstein
“When it comes to miracles, parents of kids with special needs are the lucky ones. Our kids may never attend the best private schools, or elite universities, but we can find a miracle in every one of their accomplishments, however small or great.” Elaine Hall, author, educator, mom of a child with Autism.
A friend lent me the book, now I see the moon, by Elaine Hall with Elizabeth Kaye. She is the amazing and tireless mother of a child she adopted from Russia. Her son, who started his life in a Russian orphanage, was diagnosed with Autism shortly after arriving in this country. Reading the pages of her life was like an out-of-body experience. Her pages chronicle the intense emotions we experienced during our adoption journey from birth to diagnosis and beyond. So many things are amazingly similar and we share a common mindset about the challenges we face.
We were chosen.
Faith will get us through.
Recognize miracles daily.
Just for example, this holiday was another one of those meltdown manic days. We started seeing the critical clues when about a bah-zillion people showed up for church and surrounded us in our pew. Very difficult situation, the perfect storm was brewing, but we must force ourselves to seek the miracle through the madness.
Miracle #1: Jake was losing it but didn’t hit me, wet his pants or fit during Mass. That’s HUGE.
Miracle #2: We made it through the first half of church until ‘break time’ then came back calm and composed and even managed to pray a little.
Miracle #3: Jake spontaneously introduced himself to a group of 3 kids sitting behind us and invited them to play appropriately. WOW WOW
Miracle #4: During his holiday meltdown in the afternoon, Jake was able to verbalize MANY feelings: anger, fear, exhaustion, frustration, the need to be held, and how much he still loved me, even though I had stopped paying attention to his behaviors.
Miracle #5: After a shower, small supper and fresh change of clothes, he composed himself, cleaned up his “quiet room” and made the bed.
I'm not sure but those may seem like typical expectations for the appropriately developing child, but for a kiddo with super powers, those are all amazing feats.
His world was rocked from the word ‘go’ this morning and the anxiety about the holiday started with a 4am wake-up call. I was dreadful when his breakfast consisted of peeps, sweet tarts and nerds from the Easter bunny, but forced it out of my head. It’s a nearly-herculean act for me NOT to panic when the morning starts like this and we’re on the way to church, but I have to make myself see the positive side of the situation. It’s not easy! Some days, depression and depletion lurk close to the surface.
When he started licking my arm during Easter services, ripped up his drawing pad and drummed his fingers on top of Chris’ head during the homily, we could have exploded-punished-made a scene or ignored the behavior while understanding the underlying triggers. We knew where it was coming from and were glad we realized he was giving us the cues of doom. That's a blessing.
Recognizing emotion and reading social cues are difficult tasks for most kids struggling with Autism. But during the afternoon rage, he begged me through tears to be happy again after reading the look on my face. Even when I insisted I was fine and he was safe, he saw the tension in my shoulders and forehead. He could the see the disappointment when I noticed the freshly-made hole in the wall of his quiet room and I never spoke a word.
So though our everydays are extremely challenging, holidays are hellish, and changes in routine rock our world, Chris and I must choose to witness our family’s many miracles, even on the worst days.
Doubt and depression are not an option, staying miracle-minded keeps us on the positive path.
Find the miracles in your lives!!
Be Miracle Minded
April 24, 2011
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle.” Albert Einstein
“When it comes to miracles, parents of kids with special needs are the lucky ones. Our kids may never attend the best private schools, or elite universities, but we can find a miracle in every one of their accomplishments, however small or great.” Elaine Hall, author, educator, mom of a child with Autism.
A friend lent me the book, now I see the moon, by Elaine Hall with Elizabeth Kaye. She is the amazing and tireless mother of a child she adopted from Russia. Her son, who started his life in a Russian orphanage, was diagnosed with Autism shortly after arriving in this country. Reading the pages of her life was like an out-of-body experience. Her pages chronicle the intense emotions we experienced during our adoption journey from birth to diagnosis and beyond. So many things are amazingly similar and we share a common mindset about the challenges we face.
We were chosen.
Faith will get us through.
Recognize miracles daily.
Just for example, this holiday was another one of those meltdown manic days. We started seeing the critical clues when about a bah-zillion people showed up for church and surrounded us in our pew. Very difficult situation, the perfect storm was brewing, but we must force ourselves to seek the miracle through the madness.
Miracle #1: Jake was losing it but didn’t hit me, wet his pants or fit during Mass. That’s HUGE.
Miracle #2: We made it through the first half of church until ‘break time’ then came back calm and composed and even managed to pray a little.
Miracle #3: Jake spontaneously introduced himself to a group of 3 kids sitting behind us and invited them to play appropriately. WOW WOW
Miracle #4: During his holiday meltdown in the afternoon, Jake was able to verbalize MANY feelings: anger, fear, exhaustion, frustration, the need to be held, and how much he still loved me, even though I had stopped paying attention to his behaviors.
Miracle #5: After a shower, small supper and fresh change of clothes, he composed himself, cleaned up his “quiet room” and made the bed.
I'm not sure but those may seem like typical expectations for the appropriately developing child, but for a kiddo with super powers, those are all amazing feats.
His world was rocked from the word ‘go’ this morning and the anxiety about the holiday started with a 4am wake-up call. I was dreadful when his breakfast consisted of peeps, sweet tarts and nerds from the Easter bunny, but forced it out of my head. It’s a nearly-herculean act for me NOT to panic when the morning starts like this and we’re on the way to church, but I have to make myself see the positive side of the situation. It’s not easy! Some days, depression and depletion lurk close to the surface.
When he started licking my arm during Easter services, ripped up his drawing pad and drummed his fingers on top of Chris’ head during the homily, we could have exploded-punished-made a scene or ignored the behavior while understanding the underlying triggers. We knew where it was coming from and were glad we realized he was giving us the cues of doom. That's a blessing.
Recognizing emotion and reading social cues are difficult tasks for most kids struggling with Autism. But during the afternoon rage, he begged me through tears to be happy again after reading the look on my face. Even when I insisted I was fine and he was safe, he saw the tension in my shoulders and forehead. He could the see the disappointment when I noticed the freshly-made hole in the wall of his quiet room and I never spoke a word.
So though our everydays are extremely challenging, holidays are hellish, and changes in routine rock our world, Chris and I must choose to witness our family’s many miracles, even on the worst days.
Doubt and depression are not an option, staying miracle-minded keeps us on the positive path.
Find the miracles in your lives!!
-----------------------------------------------
Who Would Have Thought?
April 10, 2011
If you knew Jake in the beginning, the hours of spinning, pounding and running, who would have thought he’d be reading in front of a church full of hundreds of people! This weekend, our Super Hero read a petition during church which left me speechless, blotchy and blubbering like a baby.
Just a few months ago, I didn’t know if he’d ever READ at all. I carried the stress and fear of his future on my shoulders, and prayed nightly that the mismatched wires in his brain would miraculously connect.
Nightly, we practice reading old books, new books, fiction books, and cartoon books. I never really know if he’s memorizing the text on the pages or if he is comprehending the story at all.
But standing in front of a church full of friends, acquaintances and strangers, there was no doubt he fully understood what he was reading: "That families and all who live with Autism find their faith to be a source of strength, community, and hope, we pray to the Lord! Lord hear our prayer!" Unexpected tears, sniffles, and clapping followed a normally solemn moment during the Mass.
I felt myself struggle for breath as I watched our Super Hero on the altar in disbelief. I glanced at Chris to make sure he was still capturing this amazing moment to video, then back to our best friend Mikey and saw him tear up too. I’m not alone, gasping, but felt as though time was standing still in that moment.
Twenty-nine words that define our lives were belted out with 8-year-old passion from the podium. He WAITED in line through 5 other presenters, STOOD still at the podium while holding his note card, and READ the words with growing excitement. Three miracles happened right there! By the end of his petition, he was so moved by the spirit, he was screaming “LORD, HEAR OUR PRAYER!!!” A rousing ovation came from the congregation in appreciation of Jake’s passion as tears streamed down my face. Jake hopped back to the end of the line while soaking up the applause and clapping for himself at the same time.
To me it was more than the words Jakey spoke; it was the approval, acceptance and understanding that I felt from the people in the pews, the clergy on the altar and the loving choir members. Those who have watched him climb on me, pull my hair and run up and down the aisles during church. All of them FINALLY seemed to understand and feel the pure spirit bottled up inside our Super Hero.
Simply super.
Just Jake.
Definitely divine.
Who Would Have Thought?
April 10, 2011
If you knew Jake in the beginning, the hours of spinning, pounding and running, who would have thought he’d be reading in front of a church full of hundreds of people! This weekend, our Super Hero read a petition during church which left me speechless, blotchy and blubbering like a baby.
Just a few months ago, I didn’t know if he’d ever READ at all. I carried the stress and fear of his future on my shoulders, and prayed nightly that the mismatched wires in his brain would miraculously connect.
Nightly, we practice reading old books, new books, fiction books, and cartoon books. I never really know if he’s memorizing the text on the pages or if he is comprehending the story at all.
But standing in front of a church full of friends, acquaintances and strangers, there was no doubt he fully understood what he was reading: "That families and all who live with Autism find their faith to be a source of strength, community, and hope, we pray to the Lord! Lord hear our prayer!" Unexpected tears, sniffles, and clapping followed a normally solemn moment during the Mass.
I felt myself struggle for breath as I watched our Super Hero on the altar in disbelief. I glanced at Chris to make sure he was still capturing this amazing moment to video, then back to our best friend Mikey and saw him tear up too. I’m not alone, gasping, but felt as though time was standing still in that moment.
Twenty-nine words that define our lives were belted out with 8-year-old passion from the podium. He WAITED in line through 5 other presenters, STOOD still at the podium while holding his note card, and READ the words with growing excitement. Three miracles happened right there! By the end of his petition, he was so moved by the spirit, he was screaming “LORD, HEAR OUR PRAYER!!!” A rousing ovation came from the congregation in appreciation of Jake’s passion as tears streamed down my face. Jake hopped back to the end of the line while soaking up the applause and clapping for himself at the same time.
To me it was more than the words Jakey spoke; it was the approval, acceptance and understanding that I felt from the people in the pews, the clergy on the altar and the loving choir members. Those who have watched him climb on me, pull my hair and run up and down the aisles during church. All of them FINALLY seemed to understand and feel the pure spirit bottled up inside our Super Hero.
Simply super.
Just Jake.
Definitely divine.
-----------------------------------------------
Faith, Hope and LOVE
March 20, 2011
I try to not get too preachy in these blogs, but after attending the Archdiocese of Washington DC’s Conference on Disabilities, I am able to see my Super Hero with a pure heart and clarity I missed before.
Sitting in the conference I was among priests, nuns, professionals, parents and heroes. I looked around the room feeling small and not as dedicated to the faith as the many faces surrounding me. I just wanted to learn a better way to connect with my child and learn how to paint a picture of faith for someone who thinks in black and white.
I was surrounded by Christians who I thought of as extremely religious and devout people. But even many of them admitted to walking in the footsteps of Christ yet not fully believing in the life path God had chosen for them. So much anger, lots of questions, so much pain, so much fear. I am included in this group. I am not without fear, nor am I lacking questions.
Feelings were raw and close to the surface as various speakers and performers told their life stories of triumph and disability. I watched through tears as a blind girl read a petition during mass with the Cardinal, saw a grown man with Downs Syndrome bring the audience to tears with his reading and when Jeni Stepanek, mother of the late Mattie JT Stepanek, brought up the gifts there wasn’t a dry eye in the house. I was so thankful the woman next to me had crammed what looked like an entire box of Kleenex into her handbag. I worried she was going to start charging me and my friend L. for all the tissues.
The recurring theme: Be not afraid and have an impact. (sob sniffle snort) It wasn’t any of our handicapped friends crying though – it was all of us; the adults who care for them, guide them and try to connect with them. The tears were pouring from those of us who dread middle school, fear the future and worry about what happens to our kids when we’re gone? Attendees in wheelchairs, the hearing impaired, and other challenged folks all had dry eyes, hands raised, and big smiles. They are gifts from heaven!
Maybe we should take a cue from those challenged individuals or Jake himself. He’s not afraid of living (unless you change his schedule or seat at the table {sigh}). He truly and simply lives in the moment and believes that a man named God is in a castle in heaven and watching over him. If he prays for something at night it will happen, eventually. There’s no doubt. There’s no cynicism. When he’s done on Earth, angels will carry him up to the sky to play with Abraham Lincoln, MLK Jr., grandpa Howard and our kitties Bruno and Crusher. Pure and simple.
Jake’s assignment for CCD class today was to write a story about God. It read: “Love Love Love Love. Friends Friends Friends Friends.” Then he drew an amazingly lopsided heart. I just had to sit and take that in for a moment. What else is there?
As parents of Super Heroes, we (I can only speak for us) must trust that all the work we’re doing now will spell success and happiness down the road for Jake. We must trust that God will continue to bless him throughout his tomorrows as He has through his yesterdays. We must KNOW that what happens to Jake is all part of the higher “plan”. Jake is here to teach us patience, love and humility.
I heard a comment from another mom of a special needs child. “Let us always choose hope over despair and be there for our kids”. It’s not about me, Chris, or extended family. It’s about Jake!
Let’s look at our children through God’s eyes; A perfect human whose brain just works differently. Perfect people with disabilities challenge everyone to think on another level and to see their souls by looking deep into their eyes. That’s their reason and that’s their purpose. Their pureness of heart demands respect from others, as He would have wanted. God doesn’t make mistakes.
Faith, Hope and LOVE
March 20, 2011
I try to not get too preachy in these blogs, but after attending the Archdiocese of Washington DC’s Conference on Disabilities, I am able to see my Super Hero with a pure heart and clarity I missed before.
Sitting in the conference I was among priests, nuns, professionals, parents and heroes. I looked around the room feeling small and not as dedicated to the faith as the many faces surrounding me. I just wanted to learn a better way to connect with my child and learn how to paint a picture of faith for someone who thinks in black and white.
I was surrounded by Christians who I thought of as extremely religious and devout people. But even many of them admitted to walking in the footsteps of Christ yet not fully believing in the life path God had chosen for them. So much anger, lots of questions, so much pain, so much fear. I am included in this group. I am not without fear, nor am I lacking questions.
Feelings were raw and close to the surface as various speakers and performers told their life stories of triumph and disability. I watched through tears as a blind girl read a petition during mass with the Cardinal, saw a grown man with Downs Syndrome bring the audience to tears with his reading and when Jeni Stepanek, mother of the late Mattie JT Stepanek, brought up the gifts there wasn’t a dry eye in the house. I was so thankful the woman next to me had crammed what looked like an entire box of Kleenex into her handbag. I worried she was going to start charging me and my friend L. for all the tissues.
The recurring theme: Be not afraid and have an impact. (sob sniffle snort) It wasn’t any of our handicapped friends crying though – it was all of us; the adults who care for them, guide them and try to connect with them. The tears were pouring from those of us who dread middle school, fear the future and worry about what happens to our kids when we’re gone? Attendees in wheelchairs, the hearing impaired, and other challenged folks all had dry eyes, hands raised, and big smiles. They are gifts from heaven!
Maybe we should take a cue from those challenged individuals or Jake himself. He’s not afraid of living (unless you change his schedule or seat at the table {sigh}). He truly and simply lives in the moment and believes that a man named God is in a castle in heaven and watching over him. If he prays for something at night it will happen, eventually. There’s no doubt. There’s no cynicism. When he’s done on Earth, angels will carry him up to the sky to play with Abraham Lincoln, MLK Jr., grandpa Howard and our kitties Bruno and Crusher. Pure and simple.
Jake’s assignment for CCD class today was to write a story about God. It read: “Love Love Love Love. Friends Friends Friends Friends.” Then he drew an amazingly lopsided heart. I just had to sit and take that in for a moment. What else is there?
As parents of Super Heroes, we (I can only speak for us) must trust that all the work we’re doing now will spell success and happiness down the road for Jake. We must trust that God will continue to bless him throughout his tomorrows as He has through his yesterdays. We must KNOW that what happens to Jake is all part of the higher “plan”. Jake is here to teach us patience, love and humility.
I heard a comment from another mom of a special needs child. “Let us always choose hope over despair and be there for our kids”. It’s not about me, Chris, or extended family. It’s about Jake!
Let’s look at our children through God’s eyes; A perfect human whose brain just works differently. Perfect people with disabilities challenge everyone to think on another level and to see their souls by looking deep into their eyes. That’s their reason and that’s their purpose. Their pureness of heart demands respect from others, as He would have wanted. God doesn’t make mistakes.
What the eye cannot see
February 28, 2011
Faith is a mystery for many grown adults, myself included. The idea of Holy Trinity can be confusing for even the smartest of individuals. So teaching a concrete thinker that God is up in heaven, used to be on Earth and died on a cross, can be quite a challenge.
Jake has attended church almost every Sunday of his 8 years. Sure vacations, travel, illness excluded. But it’s a ritual he’s comfortable with and expects every week. If we don’t go we better have a good reason and a plan for something else to do instead. The old ‘mommy’s just tired,’ doesn’t work in this house.
We split our time between two churches, the closest one being 25 miles from our house, the other 50! Yes there are good reasons. Not every suburban church (near our home) fully accepts an interracial family with a really loud kid into their solemn Sunday service (sad, but true. We live it). The most ‘open and welcoming’ churches have members, whether from ignorance or disapproval, look down their noses at what they don’t understand, or don’t choose to understand.
That said, our home parish in the District is mostly African American and Hispanic. They prayed for Jake, they celebrated Jake and they’ve come to love Jake. The membership boasts a dozen or so kids adopted into interracial families, as well as single parent families, beautiful two-mommy and two-daddy families. We feel it’s important for Jake to see all the different peoples of the world sharing a common faith, loving and accepting one another. He was baptized there and will make his First Communion there in a couple months.
We drive quite a ways to attend another favorite church, where the priest that baptized Jake years ago, now has his own fully African American parish. Jake enjoys this church for it’s rockin’ music, dancing, clapping and Mr. Fuzzy who sits in our pew. He’s the first one up on the pew waving his hands in the air scream-singing “Alleluia!” Yes, I do get funny looks there too, but it’s worth it to submerge Jake in his faith and that half of in his heritage.
Chris and I both find it very important to provide a foundation of faith and love for Jake, just knowing his time on Earth may not be the easiest. We want him to have knowledge of a higher power lighting his way to draw strength from. However trying to explain this to him has provided many challenging and enlightening moments.
Jake knows there’s someone called God who lives up in the sky. He has a bible and we've read all the books. He understands there’s a heavenly “super big palace with angels flying around”, all the IPods he can dream of, roller coasters and M & M McFlurries on every corner. Every being there will love him, be nice to him and he’ll see our dear friends Grandpa H., my best friend G., Abraham Lincoln, Martin Luther King Jr. and our kitties Bruno and Crusher. He’s so excited to get to this dreamland, in the midst of a frustration fit it’s not unusual to hear, “I just want to go to heaven now.”
He’s still chewing on the fact that ‘that Jesus is in his heart’, ‘he has the light of God inside him', and ‘if we were all made in God’s image, shouldn’t we all be boys?’
We’ve talked about when he ‘gets’ to go to heaven and if mommy and daddy will be there along with Sam our dog. He knows that when people “get died” they go to a place called a cemetery and are buried in a pretty box, but their souls (all renewed with no boo boos) go to heaven to play there. “Yes, Jake, even the broken legs are fixed so you won’t need a kickstand (cane).” But, I was never quite sure how much he understood of this until one day a few months ago.
We were driving past a cemetery that was decorated with flowers on nearly every gravesite. Jake pointed (yes pointing IS a big deal) out the car window and asked the dreaded question, “Is that a garden mommy?” After stuttering and stammering, deep breath in, I said, “No honey that’s the cemetery I told you about, all those people are going to heaven,” assuming he knew that each flower bouquet represented a person. “So what are the flowers for?,” he asks the obvious question which escaped my brain.
**Long silence for me to come up with something really good…** Then, “Oh I know, that’s so the angels know where to come to find all the people and bring them up heaven! Right mommy!” Sniff, sniff, slobber, full out blubber pull car over… “Yeah, buddy you’re exactly right!”
That was Divine.
We say our ‘thank you God’s, I want God’s and I’m sorry God’s’ every night. He can recite more of the prayers than I can after just hearing them once and has memorized the parts of the Mass which he recites with the priest, from the pew, with his arms raised 'n eyes shut. We have full faith that even if he’s dancing around his pew trying to get his favorite choir-member’s attention, flirting with his favorite 12 year old girl who sits near ‘our bench’ or eating the crayons I gave him to keep him busy during Mass, somehow, some way, the solid seeds of faith are being planted. We are all so blessed.
My final thought is this: I’m sort of dreading the upcoming First Communion where he has to understand that “he’s receiving Jesus and he’s going to eat Him (host) and drink his blood (wine) which tastes like mommy’s grown-up juice.” Every week, no less.
And wait until he finds out that in a few short days, Lent begins and he’s giving up fried/fast food right along with mommy for 40 days as a devotion to this imaginary being in the sky who gets to eat at McDonald’s every day.
February 28, 2011
Faith is a mystery for many grown adults, myself included. The idea of Holy Trinity can be confusing for even the smartest of individuals. So teaching a concrete thinker that God is up in heaven, used to be on Earth and died on a cross, can be quite a challenge.
Jake has attended church almost every Sunday of his 8 years. Sure vacations, travel, illness excluded. But it’s a ritual he’s comfortable with and expects every week. If we don’t go we better have a good reason and a plan for something else to do instead. The old ‘mommy’s just tired,’ doesn’t work in this house.
We split our time between two churches, the closest one being 25 miles from our house, the other 50! Yes there are good reasons. Not every suburban church (near our home) fully accepts an interracial family with a really loud kid into their solemn Sunday service (sad, but true. We live it). The most ‘open and welcoming’ churches have members, whether from ignorance or disapproval, look down their noses at what they don’t understand, or don’t choose to understand.
That said, our home parish in the District is mostly African American and Hispanic. They prayed for Jake, they celebrated Jake and they’ve come to love Jake. The membership boasts a dozen or so kids adopted into interracial families, as well as single parent families, beautiful two-mommy and two-daddy families. We feel it’s important for Jake to see all the different peoples of the world sharing a common faith, loving and accepting one another. He was baptized there and will make his First Communion there in a couple months.
We drive quite a ways to attend another favorite church, where the priest that baptized Jake years ago, now has his own fully African American parish. Jake enjoys this church for it’s rockin’ music, dancing, clapping and Mr. Fuzzy who sits in our pew. He’s the first one up on the pew waving his hands in the air scream-singing “Alleluia!” Yes, I do get funny looks there too, but it’s worth it to submerge Jake in his faith and that half of in his heritage.
Chris and I both find it very important to provide a foundation of faith and love for Jake, just knowing his time on Earth may not be the easiest. We want him to have knowledge of a higher power lighting his way to draw strength from. However trying to explain this to him has provided many challenging and enlightening moments.
Jake knows there’s someone called God who lives up in the sky. He has a bible and we've read all the books. He understands there’s a heavenly “super big palace with angels flying around”, all the IPods he can dream of, roller coasters and M & M McFlurries on every corner. Every being there will love him, be nice to him and he’ll see our dear friends Grandpa H., my best friend G., Abraham Lincoln, Martin Luther King Jr. and our kitties Bruno and Crusher. He’s so excited to get to this dreamland, in the midst of a frustration fit it’s not unusual to hear, “I just want to go to heaven now.”
He’s still chewing on the fact that ‘that Jesus is in his heart’, ‘he has the light of God inside him', and ‘if we were all made in God’s image, shouldn’t we all be boys?’
We’ve talked about when he ‘gets’ to go to heaven and if mommy and daddy will be there along with Sam our dog. He knows that when people “get died” they go to a place called a cemetery and are buried in a pretty box, but their souls (all renewed with no boo boos) go to heaven to play there. “Yes, Jake, even the broken legs are fixed so you won’t need a kickstand (cane).” But, I was never quite sure how much he understood of this until one day a few months ago.
We were driving past a cemetery that was decorated with flowers on nearly every gravesite. Jake pointed (yes pointing IS a big deal) out the car window and asked the dreaded question, “Is that a garden mommy?” After stuttering and stammering, deep breath in, I said, “No honey that’s the cemetery I told you about, all those people are going to heaven,” assuming he knew that each flower bouquet represented a person. “So what are the flowers for?,” he asks the obvious question which escaped my brain.
**Long silence for me to come up with something really good…** Then, “Oh I know, that’s so the angels know where to come to find all the people and bring them up heaven! Right mommy!” Sniff, sniff, slobber, full out blubber pull car over… “Yeah, buddy you’re exactly right!”
That was Divine.
We say our ‘thank you God’s, I want God’s and I’m sorry God’s’ every night. He can recite more of the prayers than I can after just hearing them once and has memorized the parts of the Mass which he recites with the priest, from the pew, with his arms raised 'n eyes shut. We have full faith that even if he’s dancing around his pew trying to get his favorite choir-member’s attention, flirting with his favorite 12 year old girl who sits near ‘our bench’ or eating the crayons I gave him to keep him busy during Mass, somehow, some way, the solid seeds of faith are being planted. We are all so blessed.
My final thought is this: I’m sort of dreading the upcoming First Communion where he has to understand that “he’s receiving Jesus and he’s going to eat Him (host) and drink his blood (wine) which tastes like mommy’s grown-up juice.” Every week, no less.
And wait until he finds out that in a few short days, Lent begins and he’s giving up fried/fast food right along with mommy for 40 days as a devotion to this imaginary being in the sky who gets to eat at McDonald’s every day.
