Finding Strength (12)
Healing Through Grief
11.2019
Alexa defines grief as: Mental suffering or distress over affliction or loss. Deep sorrow.
Someone should tell Alexa about parenting!!
When your heart is living outside your body, 100 miles away. What’s that called, Alexa?
Jakey has been away from us for just more than a month. The house is quiet, I don’t like it. I call on my own “babysitters” to keep me company when Chris works. If I’m lucky, they wine and dine me too! I am very blessed in this area and do not take it for granted. Not quite sure how to repay all our “team” for which we are eternally grateful.
My brain is active but confused. I swish and swash from logic to foolishness in the same second. Logically, we made the best, hardest and most loving decision to save Jake’s life all over again. Foolishly, I worry about things he’s learning (or not), that no one is hugging him, and fear he’ll be resentful one day.
Tears are very close to the surface. I feel them crest as I look at the empty car seat next to me, vacant seat in my church pew and think about the fact that we haven’t had to really do a big “grocery shop” in a month. Choosing a radio station in the car can take me a really long time. BPM is his jam! Still finding mine.
Being an intensely emotional/feeler thinker makes it all that much more difficult to push the foolish fears to the corner and focus on logic. I know we did the best and only thing for all of us, but the ache is physical at times.
Will I, one day, be able to spend part of an hour where he doesn’t enter my mind? Will my body stop tensing up at 1:45 every afternoon as if it still school pickup time?
I am worthy to have fun and focus on just me… says logic.
But what if I just sit here and stare at TV?
Which leads to the next predicament: what do I like to do now? I haven’t really had to answer that question in 17 years, because we chose to fill every extra minute with enrichment activities with Jake; Historic sites, adventures, new restaurants and travel. Maybe I’ll go back and actually read the signs and exhibits at so many of the cool places we breezed through while discussing the rich history of this geographic area.
Exercise and taking care of my body is calling to me too. Trying to move, punch or pedal every day. I have to blast music though or my mind wanders easily. Must keep moving... have to live till 120.
Putting myself first is a difficult ask. My entire life, everyone has gone before me. Not sure exactly why, well I have some ideas but that's a different book (there’s surely a therapy lesson in there someplace.). I’m a nurturer. I do enjoy helping less fortunate and feel as if it’s not only my job but God’s work. Those who can... give. So there’s an element of this, that will always exist. Finding a way to balance this is challenging.
What I have to remember is that my brain and body are in need of healing and recovery. Traumatic Stress Disorder among parents of kids with autism/I/DD is common. My adrenal system is slowly coming back to normal after spending years of stuffing every emotion and masking any feeling of fear from Jake. Staying calm when in danger will throw everything out of whack!!
My shoulders are lower and as Jake thrives daily from afar, the pain in my heart and guts lessens.
There's a pile of pride woven through and confusing all these emotions too. While Jake’s life has been one giant sequence of confusing contradictions and recorded national events, I do not doubt that these steps, that many will never experience, are preparing him for an amazing life of service and fulfillment.
So while I’m still swishing and swaying back n forth, can cry if someone looks at me lovingly, and spend too many hours working to distract myself, I am getting better. He is getting better. Our family is on the mend. The foundation of love is what will carry us and allow us to hope every day.
Just the fact that I’m able to put these thoughts on paper is progress.
I just remembered something I like doing: writing!
##
11.2019
Alexa defines grief as: Mental suffering or distress over affliction or loss. Deep sorrow.
Someone should tell Alexa about parenting!!
When your heart is living outside your body, 100 miles away. What’s that called, Alexa?
Jakey has been away from us for just more than a month. The house is quiet, I don’t like it. I call on my own “babysitters” to keep me company when Chris works. If I’m lucky, they wine and dine me too! I am very blessed in this area and do not take it for granted. Not quite sure how to repay all our “team” for which we are eternally grateful.
My brain is active but confused. I swish and swash from logic to foolishness in the same second. Logically, we made the best, hardest and most loving decision to save Jake’s life all over again. Foolishly, I worry about things he’s learning (or not), that no one is hugging him, and fear he’ll be resentful one day.
Tears are very close to the surface. I feel them crest as I look at the empty car seat next to me, vacant seat in my church pew and think about the fact that we haven’t had to really do a big “grocery shop” in a month. Choosing a radio station in the car can take me a really long time. BPM is his jam! Still finding mine.
Being an intensely emotional/feeler thinker makes it all that much more difficult to push the foolish fears to the corner and focus on logic. I know we did the best and only thing for all of us, but the ache is physical at times.
Will I, one day, be able to spend part of an hour where he doesn’t enter my mind? Will my body stop tensing up at 1:45 every afternoon as if it still school pickup time?
I am worthy to have fun and focus on just me… says logic.
But what if I just sit here and stare at TV?
Which leads to the next predicament: what do I like to do now? I haven’t really had to answer that question in 17 years, because we chose to fill every extra minute with enrichment activities with Jake; Historic sites, adventures, new restaurants and travel. Maybe I’ll go back and actually read the signs and exhibits at so many of the cool places we breezed through while discussing the rich history of this geographic area.
Exercise and taking care of my body is calling to me too. Trying to move, punch or pedal every day. I have to blast music though or my mind wanders easily. Must keep moving... have to live till 120.
Putting myself first is a difficult ask. My entire life, everyone has gone before me. Not sure exactly why, well I have some ideas but that's a different book (there’s surely a therapy lesson in there someplace.). I’m a nurturer. I do enjoy helping less fortunate and feel as if it’s not only my job but God’s work. Those who can... give. So there’s an element of this, that will always exist. Finding a way to balance this is challenging.
What I have to remember is that my brain and body are in need of healing and recovery. Traumatic Stress Disorder among parents of kids with autism/I/DD is common. My adrenal system is slowly coming back to normal after spending years of stuffing every emotion and masking any feeling of fear from Jake. Staying calm when in danger will throw everything out of whack!!
My shoulders are lower and as Jake thrives daily from afar, the pain in my heart and guts lessens.
There's a pile of pride woven through and confusing all these emotions too. While Jake’s life has been one giant sequence of confusing contradictions and recorded national events, I do not doubt that these steps, that many will never experience, are preparing him for an amazing life of service and fulfillment.
So while I’m still swishing and swaying back n forth, can cry if someone looks at me lovingly, and spend too many hours working to distract myself, I am getting better. He is getting better. Our family is on the mend. The foundation of love is what will carry us and allow us to hope every day.
Just the fact that I’m able to put these thoughts on paper is progress.
I just remembered something I like doing: writing!
##
Trying to Cry
10.2019
Pretty ironic that the last time I posted on this page it was about self-care 5-years ago. Admittedly, I'm still not very good at it, but I need be, and soon! For the first time in my last two decades, I'm facing decisions about me, without Jake.
Jake received residential placement at a school for children with multiple disabilities, about 100 miles from our home. My life is quiet, non-scheduled (except for work), and weird. I don't have to set an alarm for 5am. I don't have to make school lunches. I don't have to race to make the bus then collapse back into bed from exhaustion. I also won't hear, "Ummah, I'm hungry! What is there to eat?" or "Ummah come look at my bed I made it so nicely and my room is so clean!" Instead, I'm catching myself remembering how hard we all worked day-in and day-out to just survive. To stay alive, literally.
Thinking of all the stress I was managing while walking on eggshells around Jake's triggers, makes me wonder if we were facing this decision sooner, but we didn't want to face it. When is a parent ready to send their vulnerable child off to a new life alone? I didn't want to lose him or trust him with strangers. I was determined that I could love him out of this phase!
Once Jake reached heights over six feet, muscles of he-man and surging testosterone, my determination waned. His fear of himself, impulsivity, strength and confusion caused so much stress and unpredictability. Things we usually did, daily routines, became dangerous for all of us. It became clear that we needed to let him go, to let him live.
At first thoughts of residential placement, I never cried so hard. Fetal position, gut-wrenching sobbing until I puked. Several nights. We worked so many years to have a child, so many losses and now we are facing this separation.
All steps aligned perfectly, as they usually do for Jake, and he was accepted into the only residential placement we would accept.
The anxiety building up to the very distant move-in day was horrible! We were watching him struggle, unable to even make a decision about food or clothes. It was becoming more and more clear he needed a simpler pace at life, less stimulation, more structure. He needed a team... a staff... 24/7 which I was not enough to provide.
The day we parted, we gave Jake a fluffy teddy bear, lavender scented, with a voice recording inside. We made a photo album of all his friends, police and public figures included, sending him encouragement and well-wishes. As he hugged the teddy bear and flipped through the pages of his new book, my throat closed and tears fell while I watched in the rear-view mirror. I pulled out my old standard lie to cover my sad or fearful emotions which he could never manage, "I'm so proud of you Jakey. My emotions are leaking out my eyes! You are so smart and beautiful. You will change the world!"
My brain wandered to how will I live without him attached to my hip? How will he eat healthy? Will he exercise? Will he make friends? Sitting on the bed next to him, I cried so hard that I couldn't say what I wanted to. We were side-by-side but he leaned away from me as I tried to give him a kiss. He cannot handle big emotions and mine were HUGE! I was able to squeak out, "You are going to rock this, Jakey. Show them what you can do!" and a kiss on the back of his neck. He replied, "Yes, I will ummah."
I cried pretty much all the way to the beach. Kept friends around me for days as my "babysitters". Distractions and fun kept me from being too sad, but I still cried myself to sleep every night. Not big cries... little ones. Staring at the ocean, I always feel closer to God here. I remember humility and focus. I am just a pebble of sand in this great big beach of a world, trying to impact the lives of the less fortunate. If I improve life for one person, stay focused on God's work, that's success.
Our first phone call is scheduled for Saturday night. Eagerly awaiting my first phone call with Jake, flanked with friends and fruity drinks. Reciting in my mind how I will respond to his pleas to come home. What do I say if he begs us to visit before the no-contact phase is over? How do I encourage him to be patient with new friends? Will he be angry or feel abandoned?
6pm and the Skype comes through. "Hi momma!!! I am calm! I got to architect all day on chill day and do academics! My teacher is so nice and calm and doesn't force me to be perfect! I did my writing and academics to learn!" I was speechless, happily so! My "heart", whom I've always said is guided directly by the hands of God, is tackling this next phase of his amazing life! I realize there's a honeymoon period, more growth and challenges ahead, but this news filled me up. There were a few incidents but he says he has been "brave and strong" to deal with things.
So here I sit, staring at the ocean, alone. I'm not good at being alone as I don't know what to do. I'm thinking about the quiet, the decisions and the changes my life is taking, but God is holding my heart and has wrapped me in His protective Love. I cannot cry. Even if I try, the tears don't come. It doesn't mean I'm not sad or lonely, but I feel weirdly calm. Hoping and praying we've given Jake the foundation he needs to succeed away from us and the faith to believe God is guiding his steps; the experiences to know the great opportunities in the world but determination to appreciate the solace of his new setting. I believe and hope.
Wishing you the best my baby boy! Soar!
Freedom lies in being bold.
(Robert Frost)
10.2019
Pretty ironic that the last time I posted on this page it was about self-care 5-years ago. Admittedly, I'm still not very good at it, but I need be, and soon! For the first time in my last two decades, I'm facing decisions about me, without Jake.
Jake received residential placement at a school for children with multiple disabilities, about 100 miles from our home. My life is quiet, non-scheduled (except for work), and weird. I don't have to set an alarm for 5am. I don't have to make school lunches. I don't have to race to make the bus then collapse back into bed from exhaustion. I also won't hear, "Ummah, I'm hungry! What is there to eat?" or "Ummah come look at my bed I made it so nicely and my room is so clean!" Instead, I'm catching myself remembering how hard we all worked day-in and day-out to just survive. To stay alive, literally.
Thinking of all the stress I was managing while walking on eggshells around Jake's triggers, makes me wonder if we were facing this decision sooner, but we didn't want to face it. When is a parent ready to send their vulnerable child off to a new life alone? I didn't want to lose him or trust him with strangers. I was determined that I could love him out of this phase!
Once Jake reached heights over six feet, muscles of he-man and surging testosterone, my determination waned. His fear of himself, impulsivity, strength and confusion caused so much stress and unpredictability. Things we usually did, daily routines, became dangerous for all of us. It became clear that we needed to let him go, to let him live.
At first thoughts of residential placement, I never cried so hard. Fetal position, gut-wrenching sobbing until I puked. Several nights. We worked so many years to have a child, so many losses and now we are facing this separation.
All steps aligned perfectly, as they usually do for Jake, and he was accepted into the only residential placement we would accept.
The anxiety building up to the very distant move-in day was horrible! We were watching him struggle, unable to even make a decision about food or clothes. It was becoming more and more clear he needed a simpler pace at life, less stimulation, more structure. He needed a team... a staff... 24/7 which I was not enough to provide.
The day we parted, we gave Jake a fluffy teddy bear, lavender scented, with a voice recording inside. We made a photo album of all his friends, police and public figures included, sending him encouragement and well-wishes. As he hugged the teddy bear and flipped through the pages of his new book, my throat closed and tears fell while I watched in the rear-view mirror. I pulled out my old standard lie to cover my sad or fearful emotions which he could never manage, "I'm so proud of you Jakey. My emotions are leaking out my eyes! You are so smart and beautiful. You will change the world!"
My brain wandered to how will I live without him attached to my hip? How will he eat healthy? Will he exercise? Will he make friends? Sitting on the bed next to him, I cried so hard that I couldn't say what I wanted to. We were side-by-side but he leaned away from me as I tried to give him a kiss. He cannot handle big emotions and mine were HUGE! I was able to squeak out, "You are going to rock this, Jakey. Show them what you can do!" and a kiss on the back of his neck. He replied, "Yes, I will ummah."
I cried pretty much all the way to the beach. Kept friends around me for days as my "babysitters". Distractions and fun kept me from being too sad, but I still cried myself to sleep every night. Not big cries... little ones. Staring at the ocean, I always feel closer to God here. I remember humility and focus. I am just a pebble of sand in this great big beach of a world, trying to impact the lives of the less fortunate. If I improve life for one person, stay focused on God's work, that's success.
Our first phone call is scheduled for Saturday night. Eagerly awaiting my first phone call with Jake, flanked with friends and fruity drinks. Reciting in my mind how I will respond to his pleas to come home. What do I say if he begs us to visit before the no-contact phase is over? How do I encourage him to be patient with new friends? Will he be angry or feel abandoned?
6pm and the Skype comes through. "Hi momma!!! I am calm! I got to architect all day on chill day and do academics! My teacher is so nice and calm and doesn't force me to be perfect! I did my writing and academics to learn!" I was speechless, happily so! My "heart", whom I've always said is guided directly by the hands of God, is tackling this next phase of his amazing life! I realize there's a honeymoon period, more growth and challenges ahead, but this news filled me up. There were a few incidents but he says he has been "brave and strong" to deal with things.
So here I sit, staring at the ocean, alone. I'm not good at being alone as I don't know what to do. I'm thinking about the quiet, the decisions and the changes my life is taking, but God is holding my heart and has wrapped me in His protective Love. I cannot cry. Even if I try, the tears don't come. It doesn't mean I'm not sad or lonely, but I feel weirdly calm. Hoping and praying we've given Jake the foundation he needs to succeed away from us and the faith to believe God is guiding his steps; the experiences to know the great opportunities in the world but determination to appreciate the solace of his new setting. I believe and hope.
Wishing you the best my baby boy! Soar!
Freedom lies in being bold.
(Robert Frost)
Don't Forget Yourself
11/20/14
Don’t forget yourself.
As it is with most things Autism lately, I seem to be going in circles. No two of these kids are the same and neither are their parents, but I keep running in the same cycle. It is my hope that by sharing what I’ve learned I can help another family.
While I’ve been at it 12 years now, I keep doing the same thing, over and over and over again. Forgetting about myself. This is not brain surgery folks.
I know that in order to take care of my family, I need to be in tip-top shape. But regardless of what my brain knows, my body knows differently and is telling me so. Just ask my doctor… who is teaching me to read all the signs.
In the last year, I’ve been to the doctor 3 times and every time the doctor says the same thing: get back to exercise, have quiet time, eat right and cut stress!
Brain: Oh, I’m so tired I’ll just exercise tomorrow.
Body: Oh yeah, how’s your back feeling?
Brain: If I just eat a little snack for supper, I’ll be able to sleep sooner.
Body: I’ll give you the pangs all night long.
Brain: I don’t need breakfast, I’ll grab coffee on the way.
Body: Yeah? How ‘bout a few stomach cramps while you are stuck in traffic on the beltway?
Brain: I’ll do my sit ups, planks and and push ups tomorrow, that’ll make it twice this week!
Body: How’s it feel when your back is stuck in one position and in spasm from your crappy couch? Bet you can’t get up off the floor either!
Brain: I’m tired, but another cup of coffee.
Body: How ‘bout a scare… thrush? Maybe strep? Digestion problems? Let’s do all three!
Brain: I’ll just work a little longer on this one project, then go to bed.
Body: Oh NO you won’t. Let’s see how you do with some blurry vision and a blazing headache.
Brain: I will just stay up a little later to watch this show.
Body: Ok, Ok Super Woman… how about some insomnia tonight?
It’s an exhausting game I seem to be playing with my body, but I’m about to forfeit this one! Please don't do the same.
To be the best parent I can be, balance is the key. It is not easy. I have to force myself to go to bed early, and I’m talking 8:30pm early. I have to keep time every day for quiet meditation and more time to completely shut off my brain.
When I’m rested, I can stay one step ahead of Jake mentally, have patience to deal when he’s testing me, and can cope without losing my temper.
When I exercise, I sleep better, actually have more energy and generally feel better overall with improved focus.
When I’m eating right, I lose weight, my knees don’t hurt and my back feels better.
When I put the computer away at supper time, I can afford my quiet time, veg out time and quiet meditation for my spiritual side.
Be sure to be good to yourself. We’re only given one shot at this, so let’s make the best of it for us and our Super Hero kids.
11/20/14
Don’t forget yourself.
As it is with most things Autism lately, I seem to be going in circles. No two of these kids are the same and neither are their parents, but I keep running in the same cycle. It is my hope that by sharing what I’ve learned I can help another family.
While I’ve been at it 12 years now, I keep doing the same thing, over and over and over again. Forgetting about myself. This is not brain surgery folks.
I know that in order to take care of my family, I need to be in tip-top shape. But regardless of what my brain knows, my body knows differently and is telling me so. Just ask my doctor… who is teaching me to read all the signs.
In the last year, I’ve been to the doctor 3 times and every time the doctor says the same thing: get back to exercise, have quiet time, eat right and cut stress!
Brain: Oh, I’m so tired I’ll just exercise tomorrow.
Body: Oh yeah, how’s your back feeling?
Brain: If I just eat a little snack for supper, I’ll be able to sleep sooner.
Body: I’ll give you the pangs all night long.
Brain: I don’t need breakfast, I’ll grab coffee on the way.
Body: Yeah? How ‘bout a few stomach cramps while you are stuck in traffic on the beltway?
Brain: I’ll do my sit ups, planks and and push ups tomorrow, that’ll make it twice this week!
Body: How’s it feel when your back is stuck in one position and in spasm from your crappy couch? Bet you can’t get up off the floor either!
Brain: I’m tired, but another cup of coffee.
Body: How ‘bout a scare… thrush? Maybe strep? Digestion problems? Let’s do all three!
Brain: I’ll just work a little longer on this one project, then go to bed.
Body: Oh NO you won’t. Let’s see how you do with some blurry vision and a blazing headache.
Brain: I will just stay up a little later to watch this show.
Body: Ok, Ok Super Woman… how about some insomnia tonight?
It’s an exhausting game I seem to be playing with my body, but I’m about to forfeit this one! Please don't do the same.
To be the best parent I can be, balance is the key. It is not easy. I have to force myself to go to bed early, and I’m talking 8:30pm early. I have to keep time every day for quiet meditation and more time to completely shut off my brain.
When I’m rested, I can stay one step ahead of Jake mentally, have patience to deal when he’s testing me, and can cope without losing my temper.
When I exercise, I sleep better, actually have more energy and generally feel better overall with improved focus.
When I’m eating right, I lose weight, my knees don’t hurt and my back feels better.
When I put the computer away at supper time, I can afford my quiet time, veg out time and quiet meditation for my spiritual side.
Be sure to be good to yourself. We’re only given one shot at this, so let’s make the best of it for us and our Super Hero kids.
Just One Moment…
11/9/14
Surely you can tell by the space between my posts that things are whacky here! Our Super Hero is working hard to get used to new changes in his body seemingly every week. As all these changes take place, he’s reverting to his comfort items we/he used years ago and we have to go back to that early-elementary-school type behavior management.
Some books I read, say every kid goes through these type of cycles and it’s expected, however we have a new-Man x’s 10 with sparse impulse control, so things are very interesting.
I met a new group of women this week and I can say hands-down, one of the smartest groups of professional moms I’ve ever met. I am humbled in their presence. We all have kids somewhere on the spectrum and/or with varying degrees of abilities. The conversation was quick, witty and empathetic. We all understood each other’s stories, having been there ourselves. We also understood the unspoken truths flying about the room.
Eyes would occasionally tear up, heads would nod and all would crack empathetic smiles. There was never a critical word spoken or implied. We all felt each other’s hearts and triumphs while relating to the disappointments as well. Never was there a head shake, disapproving glance or eye roll. And one comment that stood out in my mind was from another mom of a late teenager.
We were discussing behaviors and how they can be interpreted by those air-breathers outside our fishbowl. While those hard times really suck, they are all just “moments” in time. They do not define our children any more than any one of our bad decisions defines our entire being. They are moments of missing impulse control, impaired judgment (duh), and reactionary times.
I love this statement, as we have many “moments”!
Just today, and it’s barely 1pm, Jake nearly lost is cool when searching for a misplaced iPad. We heard snarly words cross his lips, but it was just one moment. He was able to refocus on his task with one prompt!
Breakfast was a snark-fest as the dog was out of his house while King Jake was trying to eat. Jake started acting up in order to scare the dog away, and was reprimanded. When given a choice to stay at table and ignore the dog or excuse himself to his room, he made a choice he thought he could handle and went to his room. On tough moment followed by an awesome decision.
At church, Jake’s anxiety level was high. When this happens he verbally tells me he cannot guarantee his alter-ego “Jerky Jake” will not appear. Well he was right. We drew many eyes today during Mass as Jake inappropriately hugged me, tugged my pony tail and smelled me all while sucking his thumb. It was only one moment… only a single moment.
These are just a few of the “moments” we experienced this morning, but they never last. They are short lived, no less impactful mind you, but they pass. They do not define our children, as our kids are the bravest people I know!
Let these moments go.
They are done and gone.
I need to force myself sometimes to never lose sight of the fact that Jake got up independently and occupied himself so I could sleep a tad later. He hugged me and said “I love you” first thing then asked me for warm breakfast using please and thank you spontaneously. He wanted to wear nice clothes, his crucifix and fancy hat to look good for God. He also made it through the entire Mass and a trial of the NT CCD class following.
These are all AWESOME moments and take great amounts of strength and bravery!
So next time you are feeling embarrassed by or hurt by the stares/looks or frustrated by your Super Hero’s behavior, remember, it’s only one moment and this too shall pass.
Hang tough super moms!
Peace Out.
11/9/14
Surely you can tell by the space between my posts that things are whacky here! Our Super Hero is working hard to get used to new changes in his body seemingly every week. As all these changes take place, he’s reverting to his comfort items we/he used years ago and we have to go back to that early-elementary-school type behavior management.
Some books I read, say every kid goes through these type of cycles and it’s expected, however we have a new-Man x’s 10 with sparse impulse control, so things are very interesting.
I met a new group of women this week and I can say hands-down, one of the smartest groups of professional moms I’ve ever met. I am humbled in their presence. We all have kids somewhere on the spectrum and/or with varying degrees of abilities. The conversation was quick, witty and empathetic. We all understood each other’s stories, having been there ourselves. We also understood the unspoken truths flying about the room.
Eyes would occasionally tear up, heads would nod and all would crack empathetic smiles. There was never a critical word spoken or implied. We all felt each other’s hearts and triumphs while relating to the disappointments as well. Never was there a head shake, disapproving glance or eye roll. And one comment that stood out in my mind was from another mom of a late teenager.
We were discussing behaviors and how they can be interpreted by those air-breathers outside our fishbowl. While those hard times really suck, they are all just “moments” in time. They do not define our children any more than any one of our bad decisions defines our entire being. They are moments of missing impulse control, impaired judgment (duh), and reactionary times.
I love this statement, as we have many “moments”!
Just today, and it’s barely 1pm, Jake nearly lost is cool when searching for a misplaced iPad. We heard snarly words cross his lips, but it was just one moment. He was able to refocus on his task with one prompt!
Breakfast was a snark-fest as the dog was out of his house while King Jake was trying to eat. Jake started acting up in order to scare the dog away, and was reprimanded. When given a choice to stay at table and ignore the dog or excuse himself to his room, he made a choice he thought he could handle and went to his room. On tough moment followed by an awesome decision.
At church, Jake’s anxiety level was high. When this happens he verbally tells me he cannot guarantee his alter-ego “Jerky Jake” will not appear. Well he was right. We drew many eyes today during Mass as Jake inappropriately hugged me, tugged my pony tail and smelled me all while sucking his thumb. It was only one moment… only a single moment.
These are just a few of the “moments” we experienced this morning, but they never last. They are short lived, no less impactful mind you, but they pass. They do not define our children, as our kids are the bravest people I know!
Let these moments go.
They are done and gone.
I need to force myself sometimes to never lose sight of the fact that Jake got up independently and occupied himself so I could sleep a tad later. He hugged me and said “I love you” first thing then asked me for warm breakfast using please and thank you spontaneously. He wanted to wear nice clothes, his crucifix and fancy hat to look good for God. He also made it through the entire Mass and a trial of the NT CCD class following.
These are all AWESOME moments and take great amounts of strength and bravery!
So next time you are feeling embarrassed by or hurt by the stares/looks or frustrated by your Super Hero’s behavior, remember, it’s only one moment and this too shall pass.
Hang tough super moms!
Peace Out.
I'm Not Worthy!
July 2013
I need to just take a minute to scream.
I can’t believe my life.
Is it fair for one person to have so many blessings?
AAAAAHHHHH!!!!!
Thank you! Thank you! Thank YOU!
If you’re a regular reader you know I focus on the positive aspects of living with Autism in our family. While some stories are a little raw and edgy, I really try to be real and actively seek out the gifts. It's survival on the spectrum.
When I first started writing, I never thought my life would change as it has. Not only am I carrying less stress, but I’m uplifted by the idea our stories may be touching another family. If I can touch a life through my words, I receive a feeling of such joy and fulfillment. Sorry if that sounds corny, but it’s true.
I don’t proclaim to know all the answers, I am not a doctor, nor do I think every child is the same, but if we’re experiencing something you are dealing with, I believe there is strength in sharing. It helps to not feel so alone.
Often people tell me they wonder how I can stay so positive and patient. Well I’m here to tell you, I don’t! But all of you are a huge source of my strength. I pray, a lot. I think a lot and I talk A LOT. I rely on the stability of the few amazing “rocks” in my life, starting with God, my husband, our family and few dedicated friends. Jake’s teachers and counselors guide and empower me every day and I believe all our supporters were "placed with purpose" in our lives.
Our goal is to be a source of encouragement and guidance for families struggling with Autism Spectrum Disorders. Sometimes I have to dig really deep, as you do, to find the positive in every situation. At times it takes me 6 months to think about a certain situation but I force myself to find the rainbow.
I write from such a place of emotion and love that I often don’t remember the stories.
I write.
I publish.
And then…
I…. wait.
After a couple days, I’ll read the story with fresh eyes. Then I cry. The words are my heart, come through my fingertips with divine intervention and gratitude. I often surprise myself.
So as you read this blog, please remember I am human just like you. I need friends just like you and crave the encouragement just like everyone. I thank God for your support and the gift of Autism.
Thanks for being here. You all make my writing possible.
July 2013
I need to just take a minute to scream.
I can’t believe my life.
Is it fair for one person to have so many blessings?
AAAAAHHHHH!!!!!
Thank you! Thank you! Thank YOU!
If you’re a regular reader you know I focus on the positive aspects of living with Autism in our family. While some stories are a little raw and edgy, I really try to be real and actively seek out the gifts. It's survival on the spectrum.
When I first started writing, I never thought my life would change as it has. Not only am I carrying less stress, but I’m uplifted by the idea our stories may be touching another family. If I can touch a life through my words, I receive a feeling of such joy and fulfillment. Sorry if that sounds corny, but it’s true.
I don’t proclaim to know all the answers, I am not a doctor, nor do I think every child is the same, but if we’re experiencing something you are dealing with, I believe there is strength in sharing. It helps to not feel so alone.
Often people tell me they wonder how I can stay so positive and patient. Well I’m here to tell you, I don’t! But all of you are a huge source of my strength. I pray, a lot. I think a lot and I talk A LOT. I rely on the stability of the few amazing “rocks” in my life, starting with God, my husband, our family and few dedicated friends. Jake’s teachers and counselors guide and empower me every day and I believe all our supporters were "placed with purpose" in our lives.
Our goal is to be a source of encouragement and guidance for families struggling with Autism Spectrum Disorders. Sometimes I have to dig really deep, as you do, to find the positive in every situation. At times it takes me 6 months to think about a certain situation but I force myself to find the rainbow.
I write from such a place of emotion and love that I often don’t remember the stories.
I write.
I publish.
And then…
I…. wait.
After a couple days, I’ll read the story with fresh eyes. Then I cry. The words are my heart, come through my fingertips with divine intervention and gratitude. I often surprise myself.
So as you read this blog, please remember I am human just like you. I need friends just like you and crave the encouragement just like everyone. I thank God for your support and the gift of Autism.
Thanks for being here. You all make my writing possible.
------------------------------------------------------
Hills and Valleys
April 30, 2013
This weekend I walked-more-than-ran a cross-country 5k race. Yes. All survived with just mild limping and body aches the next day. But, I can’t help but reflect back on the race and its parallels with life on the spectrum.
The Starting Line:
Filled with excitement and hope! All participants full of energy for the run and Jake decided he was going to “win it all”. That was before the starting horn blared.
The First Half Mile:
Our feet keep moving, we need to keep up with all the other runners around us. We don’t want to be the first ones to walk in the middle of the pack. What would the other runners think?
Nearing the First Mile Marker:
Jake would run fast in bursts then slow to a walk. Chris says the beginning spurts were scary because he’d run right on the edge of the street, barely on the pavement and nearly rolling his ankle the entire way.
Water Station:
Once past that first mile, we were pretty thirsty, and our steps were definitely towards replenishment. The water station was at 1.5 miles.
Thud
Thud
Inhale
Thud
“Need water? Here you go!”
Gulp
Slurp
Spill some.
I notice the runners ahead of me had made a neat stack of their used cups in the grass instead of just throwing them on the ground like we were being told. Only in an ASD race. Organized trash!!
We are all on our own spectrum, giggle.
Re-energized.
Mile Marker Two:
There was a massive climb to get to mile-marker 2. Huge hills on wet grass made our normally sure-footing, feel very unsure. Our pace slowed as we climbed to the top. I could feel the pain in my legs, butt and back. Shaky muscles, uncertain steps made my body tense. Chris reports at this part, he was having to pull Jake up the hill.
The downhill into the valley was fast. So easy to slide into those valleys. A man passed us running with huge steps down the slippery hill. We could hear his steps all the way down and it made us slow our pace even more. We were waiting for that dude to take a digger that would knock him out for weeks to come.
Once down, I breathed heavy knowing that course officials would not put another hill in this race… it would be too much for old folks like me. Thank God that hill was done. Relief.
Just before the marker, the route was situated so we were actually walking towards the people ahead of us. They had already gone down and made the loop-turn-around so they were coming back towards us. We saw Jake and Chris. Jake complained of being hot, too much sweat on his face and the hills were really hard.
I just kept looking ahead at the lovely flat terrain of this part of the track.
We ran.
The cheerleaders kept telling us we were so close to the end, we were getting silly and excited.
BAM!
We turned the corner and faced another massive hill of slippery wet grass and little yellow flags.
I was actually pissed off!
You’ve got to be kidding me. We just made it over that last really hard hurdle, now we’re facing another, even bigger one? I don’t know if I have the energy to make this next climb.
My butt. Oh my butt and legs.
Shaking with uncertainty.
Mile Marker Three:
We’re nearing the end. I can see the finish line however we have to go over and around weaving through the woods and bumpy terrain to really cross under the ballooned archway. Cheerleaders are louder now and closer. They are clapping and yelling, “just a few more steps!”
I’m thinking, I must look like I’m on my last breath, beat red and dripping with sweat!
Finish Line:
Jake and Chris stand at the finish line.
I choose my chute to the left, the girl rips off my bib, and Jake grabs my hand. He ran with me, on the other side of the ropes, until I was out of the chute. (Okay that parallel just brought tears of joy to my eyes).
Do you see it?
This journey with autism is never easy and this race illustrated exactly that!
The challenges and obstacles are where you least expect them and there are always more.
Just when you think you’ve conquered one and you are jubilant, another one hits you.
We must use all our energy to climb those mountains, push our kids to crest, but don’t relax too much.
The downhills are slick and steep. It’s so easy to slide down into a valley you may not get out of.
Along the route, there are things that energize you in your fight. Take it all in, don’t spill a drop.
Inhale hotdogs!
Hills and Valleys
April 30, 2013
This weekend I walked-more-than-ran a cross-country 5k race. Yes. All survived with just mild limping and body aches the next day. But, I can’t help but reflect back on the race and its parallels with life on the spectrum.
The Starting Line:
Filled with excitement and hope! All participants full of energy for the run and Jake decided he was going to “win it all”. That was before the starting horn blared.
The First Half Mile:
Our feet keep moving, we need to keep up with all the other runners around us. We don’t want to be the first ones to walk in the middle of the pack. What would the other runners think?
Nearing the First Mile Marker:
Jake would run fast in bursts then slow to a walk. Chris says the beginning spurts were scary because he’d run right on the edge of the street, barely on the pavement and nearly rolling his ankle the entire way.
Water Station:
Once past that first mile, we were pretty thirsty, and our steps were definitely towards replenishment. The water station was at 1.5 miles.
Thud
Thud
Inhale
Thud
“Need water? Here you go!”
Gulp
Slurp
Spill some.
I notice the runners ahead of me had made a neat stack of their used cups in the grass instead of just throwing them on the ground like we were being told. Only in an ASD race. Organized trash!!
We are all on our own spectrum, giggle.
Re-energized.
Mile Marker Two:
There was a massive climb to get to mile-marker 2. Huge hills on wet grass made our normally sure-footing, feel very unsure. Our pace slowed as we climbed to the top. I could feel the pain in my legs, butt and back. Shaky muscles, uncertain steps made my body tense. Chris reports at this part, he was having to pull Jake up the hill.
The downhill into the valley was fast. So easy to slide into those valleys. A man passed us running with huge steps down the slippery hill. We could hear his steps all the way down and it made us slow our pace even more. We were waiting for that dude to take a digger that would knock him out for weeks to come.
Once down, I breathed heavy knowing that course officials would not put another hill in this race… it would be too much for old folks like me. Thank God that hill was done. Relief.
Just before the marker, the route was situated so we were actually walking towards the people ahead of us. They had already gone down and made the loop-turn-around so they were coming back towards us. We saw Jake and Chris. Jake complained of being hot, too much sweat on his face and the hills were really hard.
I just kept looking ahead at the lovely flat terrain of this part of the track.
We ran.
The cheerleaders kept telling us we were so close to the end, we were getting silly and excited.
BAM!
We turned the corner and faced another massive hill of slippery wet grass and little yellow flags.
I was actually pissed off!
You’ve got to be kidding me. We just made it over that last really hard hurdle, now we’re facing another, even bigger one? I don’t know if I have the energy to make this next climb.
My butt. Oh my butt and legs.
Shaking with uncertainty.
Mile Marker Three:
We’re nearing the end. I can see the finish line however we have to go over and around weaving through the woods and bumpy terrain to really cross under the ballooned archway. Cheerleaders are louder now and closer. They are clapping and yelling, “just a few more steps!”
I’m thinking, I must look like I’m on my last breath, beat red and dripping with sweat!
Finish Line:
Jake and Chris stand at the finish line.
I choose my chute to the left, the girl rips off my bib, and Jake grabs my hand. He ran with me, on the other side of the ropes, until I was out of the chute. (Okay that parallel just brought tears of joy to my eyes).
Do you see it?
This journey with autism is never easy and this race illustrated exactly that!
The challenges and obstacles are where you least expect them and there are always more.
Just when you think you’ve conquered one and you are jubilant, another one hits you.
We must use all our energy to climb those mountains, push our kids to crest, but don’t relax too much.
The downhills are slick and steep. It’s so easy to slide down into a valley you may not get out of.
Along the route, there are things that energize you in your fight. Take it all in, don’t spill a drop.
Inhale hotdogs!
----------------------------------
Thank You, Autism
March 8, 2013
Each and every posting I write, is a form of therapy for me. As you read, some of the anger and frustration is raw as I’m purge negative feelings through my fingertips. Other entries are filled with amazement and respect for how far our Super Hero has come through years of exhausting struggles.
Tonight I write in gratitude.
Some of our days are not easy, well many of our days are anything but, however I’m coming to realize my life would not be what it is today, without Autism.
Adopting our son 10 years ago, we were like all new parents, filled with excitement and hope for the future. Nothing could dash our dreams as we juggled jobs with new parenting and family visits. As we progressed, the days did get harder, longer and filled with more challenges. There were times of despair and devastation but we forced ourselves from the depths.
Would I give up the temper tantrums, poopy painting and physical battles? Heck, Yes! But I would never trade the opportunities raising a child with Autism has afforded our family.
First and foremost, the people you meet along the autism road are good, good people. I truly believe that. I will never trade my friends who are other spectrum moms for they provide support and strength unmatched by many. AS, CP, LT, DJ, VL, my current ‘mom’s’ group is an amazing group of women whom I would have never met without Autism. Kudos also to AB, JS, SB, CS, MH, MW, AK, CH, AH, JM, JC, other Super Hero Moms whom I admire greatly.
I don’t know if I would have the job I currently hold at Weinfeld Education Group if I didn’t have a Super Hero child. Jake led me to WEG after many challenges in public school and now I’m blessed enough to be able to help other families like ours. In turn, my job with WEG has led me to meet other selfless and tireless professionals in the special needs field who are making changes in the lives of Autism families here and on a national level!
Autism has allowed me to see the world through its very sensitive and impressionable eyes. I struggle to see life as Jake sees it: through spectrum colored glasses. While I admit I don’t see the details or take the ‘brain pictures’ he is able to take, I do appreciate beauty on another level. Have you ever really studied an elevator shaft?
How many little fuzzy things are on the back of a bumble bee? Did you know the paint is chipped at the very top of the dome ceiling in the church about 4 stories high? And there’s an Eagle’s nest in the tree along the highway on the way into DC? Bet you never noticed it 60 feet in the air while driving past at 65 mph.
I notice every bird chirp, car engine, heavy sigh and fluorescent light! My ears are nowhere near as strong as spectrum kiddos, but I try harder to get into their world. Subtle sounds do not go unnoticed. Wind chimes, car doors, and dogs barking, and conversations inside the neighbor’s house! Thanks Autism.
Living with ASD has given me a platform to help other families, too. Would I have been this connected or inspired if I had a typically developing child? I don’t know. But, this blog about raising a Super Hero has reached 20,000+ readers around the world. Families, hungry for information, camaraderie and just knowing someone else is going through the same thing, visit Jake’s world and hopefully don’t feel so alone. Blessed for this opportunity to teach and hopefully inspire.
This disability has enabled me to love on another level. Not only my husband, but friends and family as well. I’ve learned through our son’s autism that we are all spiritual beings. We have a connection to each other and the world that is invisible yet tangible at the same time.
Autism has brought to us the best attitudes, humor and the most generous friends I could never have imagined. Our lives are so full on the spectrum. Our relationships are strong!
So if you’re struggling to see the light dampened by disability, I urge you to seek out your blessings. Perseverate on the positive and focus only forward!
Thanks Autism for giving me friends who are heroes, a new purpose in life and beauty around every corner.
Life is good.
Thank You, Autism
March 8, 2013
Each and every posting I write, is a form of therapy for me. As you read, some of the anger and frustration is raw as I’m purge negative feelings through my fingertips. Other entries are filled with amazement and respect for how far our Super Hero has come through years of exhausting struggles.
Tonight I write in gratitude.
Some of our days are not easy, well many of our days are anything but, however I’m coming to realize my life would not be what it is today, without Autism.
Adopting our son 10 years ago, we were like all new parents, filled with excitement and hope for the future. Nothing could dash our dreams as we juggled jobs with new parenting and family visits. As we progressed, the days did get harder, longer and filled with more challenges. There were times of despair and devastation but we forced ourselves from the depths.
Would I give up the temper tantrums, poopy painting and physical battles? Heck, Yes! But I would never trade the opportunities raising a child with Autism has afforded our family.
First and foremost, the people you meet along the autism road are good, good people. I truly believe that. I will never trade my friends who are other spectrum moms for they provide support and strength unmatched by many. AS, CP, LT, DJ, VL, my current ‘mom’s’ group is an amazing group of women whom I would have never met without Autism. Kudos also to AB, JS, SB, CS, MH, MW, AK, CH, AH, JM, JC, other Super Hero Moms whom I admire greatly.
I don’t know if I would have the job I currently hold at Weinfeld Education Group if I didn’t have a Super Hero child. Jake led me to WEG after many challenges in public school and now I’m blessed enough to be able to help other families like ours. In turn, my job with WEG has led me to meet other selfless and tireless professionals in the special needs field who are making changes in the lives of Autism families here and on a national level!
Autism has allowed me to see the world through its very sensitive and impressionable eyes. I struggle to see life as Jake sees it: through spectrum colored glasses. While I admit I don’t see the details or take the ‘brain pictures’ he is able to take, I do appreciate beauty on another level. Have you ever really studied an elevator shaft?
How many little fuzzy things are on the back of a bumble bee? Did you know the paint is chipped at the very top of the dome ceiling in the church about 4 stories high? And there’s an Eagle’s nest in the tree along the highway on the way into DC? Bet you never noticed it 60 feet in the air while driving past at 65 mph.
I notice every bird chirp, car engine, heavy sigh and fluorescent light! My ears are nowhere near as strong as spectrum kiddos, but I try harder to get into their world. Subtle sounds do not go unnoticed. Wind chimes, car doors, and dogs barking, and conversations inside the neighbor’s house! Thanks Autism.
Living with ASD has given me a platform to help other families, too. Would I have been this connected or inspired if I had a typically developing child? I don’t know. But, this blog about raising a Super Hero has reached 20,000+ readers around the world. Families, hungry for information, camaraderie and just knowing someone else is going through the same thing, visit Jake’s world and hopefully don’t feel so alone. Blessed for this opportunity to teach and hopefully inspire.
This disability has enabled me to love on another level. Not only my husband, but friends and family as well. I’ve learned through our son’s autism that we are all spiritual beings. We have a connection to each other and the world that is invisible yet tangible at the same time.
Autism has brought to us the best attitudes, humor and the most generous friends I could never have imagined. Our lives are so full on the spectrum. Our relationships are strong!
So if you’re struggling to see the light dampened by disability, I urge you to seek out your blessings. Perseverate on the positive and focus only forward!
Thanks Autism for giving me friends who are heroes, a new purpose in life and beauty around every corner.
Life is good.
-----------------------------------------------------
Ready, Set, Mommy Time
July 28, 2011
The first day of “mommy time” felt like a marathon and ended 18 hours later with a touchdown. This is the time of year when it’s my time with Jake all the time – it’s called NFL training camp. While Chris is away at camp from before sun-up to minutes after midnight, I’m on duty around the clock.
My and Jake’s day started at 1:19am. I was awakened by Jake’s trembling and sweaty body draped over mine with an elbow in my abdomen, “I had a bad dream… a big scary monster…” Since I had gone to bed just 3 hours earlier you can imagine my mood. I was able to mumble out a relatively calm, “You are safe; calm your body, go pee and get back in bed.”
He did. WOW. But I guess I forgot to tell him to actually go back to sleep. As I began to drift off again I hear a little voice trailing down the hallway. Are you kidding me? Well I never told him to be quiet, that’s what I get. My body feels like 300 lbs. as I drag myself from bed and to the other end of the house. I opened his door to look in. There he was, sitting up in his bed; wearing a giant grin and stimming away like an amusement park ride. As he flipped his hands in front of his face and around his head, he was even humming the appropriate song you’d hear playing at the fairgrounds.
“Jake, you need to go back to sleep or you’re going to have a really rough day at school.”
“Alright.”
2:30 am, I hear the water running full blast in Jake’s bathroom. I now weigh 400 lbs. and stomped down the hallway and blasted open the bathroom door. “My Super Powers are making my eyes itch!” he tells me as he slaps his eyes with a soaking wet beach towel.
“No, you just need to SHUT THEM!” yeah, I’m so great at keeping my cool. NOT!!!
Super Jake ran away from me down the hallway to his room and I swear his feet left the floor about 20 feet from his bed. As he launched his muscular frame into his bed piled with blankets I yelled, “if you want happy mommy in the morning, you better go back to sleep this time!!!!” Slam door. Classy, I know.
I passed the sopping wet bathroom in full denial of the wet mess and landed back in my bed. I was so pissed there was no way I could possibly go back to sleep. I just lay there and think about the fact that I have to work in the morning with 7 budding Super Heroes and two teachers that I’ve never met before. Ggggrrrrr
I think I fell asleep…
4:10 am, toilet flush.
4:45 am, desk drawer slam. He’s still up, now doing art projects.
5:00 am, the washer in the laundry room started chugging around the room on the spin cycle. Crap, I must have miscalculated the delay setting and it came on too early. I GIVE UP.
5:30 am, Jake flew down the stairs, notice he didn’t dare come in my room, and climbed onto the trampoline. He can’t just jump quietly; the IPod was blaring Veggie Tales music from the portable speakers. Ooohhhh, then a Billy Joel song (5x’s in a row). THERE IS NO HOPE.
6:10 am, Now I literally weigh 500 lbs. and drag myself down the stairs to make a Super Hero breakfast. How am I going to work today? I could barely open my eyes… and this child was going full tilt. I fumbled through the fridge, found the juice, his meds and an apple. Thank God he only wanted cinnamon toast, I hate to think what would have happened if I had to actually turn on the stove and scramble eggs. HA.
After eating, Jake ran upstairs, got himself dressed, brushed teeth, made his bed and combed his hair! He knew better than to ask me for help and I didn’t care that he didn’t match, although I did make him turn his clothes frontwards. If he does it independently, I’m thrilled!!!!
6:45 am, lunch made, table cleared and we’re outside waiting for the bus. As he played his favorite IPod song over and over and over again, I kept a close eye on the clock. If the bus came at 7:10 – I can go back to bed for 30 minutes, 7:15 – 25 minute, 7:20 – 20 minutes… I calculate carefully while straining my ears to hear the school bus chugging down the road before it’s even visible.
As I wave goodbye to the bus, my phone started beeping with texts, the neighbor wandered over and Sam needed a walk. NO NAP!! DAMMIT!! Desperate times call for desperate measures. I couldn’t get myself to drink a hot coffee, so 2 Diet Dews it is! On the way to school, one Dew and a granola bar disappear.
9:00 am, I fought to keep my cool with the new PEP Inc class of 7 kids and new co-workers I didn’t totally agree with. Overall it wasn’t too bad: One near bite, one smear of snot, one bloody picked scab, two trips to the bathroom, a small wrestling match, a near disaster at snack (almost gave a gluten free kid an animal cracker) and an awesome wild kid chase. Needed to slam the second Mountain Dew after an aerobic and rambunctious circle time! Meanwhile, I struggled not to get too upset by texts about Jake’s spitting, wetting and meltdown at his school. Emotionally spent -- I want my bed, I want my bed, I want my bed!
1:00 pm, once home, I realized I had one flute lesson to teach then I could collapse. 60 minute lesson done, actually mustered enough energy to play my flute, and I head up to rest for a minute. Just a few feet from my fabulous, snuggly, Select Comfort bed (which seemed to be calling my name) I realized the load of laundry that was dancing around the room at 5am was still sitting in the washer. Say it isn’t so. Quick load change, noticed growling stomach, brewed a cup of coffee (love my life-saving Keurig) sliced an apple and out the door to pick up Jake. NO NAP, AGAIN!
4:00 pm, thank the Lord, Jake had a good day at camp, I couldn’t have handled anything else. Although he managed to recover from his meltdown, I managed to deny my Super Hero his beloved McDonalds (due to spitting and wet pants), debated with him on the way home and planned out our arrival. Shoes off, play computer, eat supper, books, bed.
Tick tock, tick tock, I’m almost off duty. I’m almost off duty.
5:30 pm, Jake managed to brush his own teeth, wash his own face, pee and find a book. As I picked up his bathroom, I’m SO.. NOT.. in the book mode, and if it happens it better be a SHORT one!! That darn critter pulled a 20+ page Veggie Tales book. Sigh. Groan.
5:45 pm, snuggled in the bed with Jake reading about the “Slobster” and he moved closer to put his head on my shoulder. I felt his minty breath on my neck and my eyes stuck shut with every blink. These moments are growing less frequent as our Super Hero blossoms so I actually read the book without skipping pages. I try to savor every close moment with Jake. He giggled at the silly jokes, he pointed at the slobsters, he made amazing eye contact and asked appropriate questions.
I ended the first day of my ‘mommy time’ in 18 hours and 4 miracles! That’s better than any Hail Mary pass to win a football game. I have a training camp of touchdowns ahead of me, as long as I can stay awake. So blessed.
7:30pm, write, publish and collapse.
Well hello comfy BBBBEEEEEDDDD!!!!!
Ready, Set, Mommy Time
July 28, 2011
The first day of “mommy time” felt like a marathon and ended 18 hours later with a touchdown. This is the time of year when it’s my time with Jake all the time – it’s called NFL training camp. While Chris is away at camp from before sun-up to minutes after midnight, I’m on duty around the clock.
My and Jake’s day started at 1:19am. I was awakened by Jake’s trembling and sweaty body draped over mine with an elbow in my abdomen, “I had a bad dream… a big scary monster…” Since I had gone to bed just 3 hours earlier you can imagine my mood. I was able to mumble out a relatively calm, “You are safe; calm your body, go pee and get back in bed.”
He did. WOW. But I guess I forgot to tell him to actually go back to sleep. As I began to drift off again I hear a little voice trailing down the hallway. Are you kidding me? Well I never told him to be quiet, that’s what I get. My body feels like 300 lbs. as I drag myself from bed and to the other end of the house. I opened his door to look in. There he was, sitting up in his bed; wearing a giant grin and stimming away like an amusement park ride. As he flipped his hands in front of his face and around his head, he was even humming the appropriate song you’d hear playing at the fairgrounds.
“Jake, you need to go back to sleep or you’re going to have a really rough day at school.”
“Alright.”
2:30 am, I hear the water running full blast in Jake’s bathroom. I now weigh 400 lbs. and stomped down the hallway and blasted open the bathroom door. “My Super Powers are making my eyes itch!” he tells me as he slaps his eyes with a soaking wet beach towel.
“No, you just need to SHUT THEM!” yeah, I’m so great at keeping my cool. NOT!!!
Super Jake ran away from me down the hallway to his room and I swear his feet left the floor about 20 feet from his bed. As he launched his muscular frame into his bed piled with blankets I yelled, “if you want happy mommy in the morning, you better go back to sleep this time!!!!” Slam door. Classy, I know.
I passed the sopping wet bathroom in full denial of the wet mess and landed back in my bed. I was so pissed there was no way I could possibly go back to sleep. I just lay there and think about the fact that I have to work in the morning with 7 budding Super Heroes and two teachers that I’ve never met before. Ggggrrrrr
I think I fell asleep…
4:10 am, toilet flush.
4:45 am, desk drawer slam. He’s still up, now doing art projects.
5:00 am, the washer in the laundry room started chugging around the room on the spin cycle. Crap, I must have miscalculated the delay setting and it came on too early. I GIVE UP.
5:30 am, Jake flew down the stairs, notice he didn’t dare come in my room, and climbed onto the trampoline. He can’t just jump quietly; the IPod was blaring Veggie Tales music from the portable speakers. Ooohhhh, then a Billy Joel song (5x’s in a row). THERE IS NO HOPE.
6:10 am, Now I literally weigh 500 lbs. and drag myself down the stairs to make a Super Hero breakfast. How am I going to work today? I could barely open my eyes… and this child was going full tilt. I fumbled through the fridge, found the juice, his meds and an apple. Thank God he only wanted cinnamon toast, I hate to think what would have happened if I had to actually turn on the stove and scramble eggs. HA.
After eating, Jake ran upstairs, got himself dressed, brushed teeth, made his bed and combed his hair! He knew better than to ask me for help and I didn’t care that he didn’t match, although I did make him turn his clothes frontwards. If he does it independently, I’m thrilled!!!!
6:45 am, lunch made, table cleared and we’re outside waiting for the bus. As he played his favorite IPod song over and over and over again, I kept a close eye on the clock. If the bus came at 7:10 – I can go back to bed for 30 minutes, 7:15 – 25 minute, 7:20 – 20 minutes… I calculate carefully while straining my ears to hear the school bus chugging down the road before it’s even visible.
As I wave goodbye to the bus, my phone started beeping with texts, the neighbor wandered over and Sam needed a walk. NO NAP!! DAMMIT!! Desperate times call for desperate measures. I couldn’t get myself to drink a hot coffee, so 2 Diet Dews it is! On the way to school, one Dew and a granola bar disappear.
9:00 am, I fought to keep my cool with the new PEP Inc class of 7 kids and new co-workers I didn’t totally agree with. Overall it wasn’t too bad: One near bite, one smear of snot, one bloody picked scab, two trips to the bathroom, a small wrestling match, a near disaster at snack (almost gave a gluten free kid an animal cracker) and an awesome wild kid chase. Needed to slam the second Mountain Dew after an aerobic and rambunctious circle time! Meanwhile, I struggled not to get too upset by texts about Jake’s spitting, wetting and meltdown at his school. Emotionally spent -- I want my bed, I want my bed, I want my bed!
1:00 pm, once home, I realized I had one flute lesson to teach then I could collapse. 60 minute lesson done, actually mustered enough energy to play my flute, and I head up to rest for a minute. Just a few feet from my fabulous, snuggly, Select Comfort bed (which seemed to be calling my name) I realized the load of laundry that was dancing around the room at 5am was still sitting in the washer. Say it isn’t so. Quick load change, noticed growling stomach, brewed a cup of coffee (love my life-saving Keurig) sliced an apple and out the door to pick up Jake. NO NAP, AGAIN!
4:00 pm, thank the Lord, Jake had a good day at camp, I couldn’t have handled anything else. Although he managed to recover from his meltdown, I managed to deny my Super Hero his beloved McDonalds (due to spitting and wet pants), debated with him on the way home and planned out our arrival. Shoes off, play computer, eat supper, books, bed.
Tick tock, tick tock, I’m almost off duty. I’m almost off duty.
5:30 pm, Jake managed to brush his own teeth, wash his own face, pee and find a book. As I picked up his bathroom, I’m SO.. NOT.. in the book mode, and if it happens it better be a SHORT one!! That darn critter pulled a 20+ page Veggie Tales book. Sigh. Groan.
5:45 pm, snuggled in the bed with Jake reading about the “Slobster” and he moved closer to put his head on my shoulder. I felt his minty breath on my neck and my eyes stuck shut with every blink. These moments are growing less frequent as our Super Hero blossoms so I actually read the book without skipping pages. I try to savor every close moment with Jake. He giggled at the silly jokes, he pointed at the slobsters, he made amazing eye contact and asked appropriate questions.
I ended the first day of my ‘mommy time’ in 18 hours and 4 miracles! That’s better than any Hail Mary pass to win a football game. I have a training camp of touchdowns ahead of me, as long as I can stay awake. So blessed.
7:30pm, write, publish and collapse.
Well hello comfy BBBBEEEEEDDDD!!!!!
----------------------------------------
Self Help Fiction
July 11, 2011
Trust me, I’ve read them all! Haven't you? Take a trip through my bedroom bookshelf and you’ll find dusty books on top of books, but nothing really fun and it looks like I need a lot of help. All of Dr. Greenspan’s books about Autism and how to educate a kid with Super Powers; activities for quirky kids (that rarely work), paperbacks written by parents further down the "A trail" than our family. Then there are the shelves of books about adoption, interracial adoption, written by kids, adoptive parents, and their siblings. The next shelf with the sure fire ways to get into heaven. (I gotta read up!) Words of Pope John Paul II, Mother Theresa, Pope Benedict, the road less traveled.
In all these ink filled pages, I have read about my destiny, Jake’s future, and ways to solidify my marriage. Most of the books about Autism explain a dark/challenging world, not much hope for independence, no free-time for parents and no real explanation of how these kids suffer moment to moment. So I quit reading!
My first real glimmer of hope was reading all the books penned by the amazing Temple Grandin! She proved everyone (me included) wrong. This genius with autism explained the confusing world in which she and Jake (and many of our friends) are trapped in, to a "T". Her symptoms mirror many of Jakes but she was able to tie emotion to them and that was life changing.
Right now, I’m reading a book, fiction mind you, that has hit the ASD nail on the head as well. Jodi Picoult and her book House Rules has explained Jake’s world through the eyes of an older kid who struggles with Aspergers symptons. I came across a page this afternoon and as my eyes glided across the words the first time I gasped. I had to reread, reread and then sit. I am amazed at how Picoult captured our ASD world in so few words and so accurately.
If you haven’t read the book, everyone should, but below is a snippet from my favorite page. This page is the view of Jacob the main character, a teen with Aspergers.
“When I was little, I convinced my brother that I had superpowers. Why else would I be able to hear what our mother was doing upstairs when we were downstairs? Why not say that the reason fluorescent bulbs made me dizzy was that I was so sensitive to light? When I missed a question Theo asked me, I told him it was because I could hear so many conversations and the background noises at once, that sometimes it was hard for me to focus on just one sound at a time.
For a while, it worked. And then my brother figured out I wasn’t gifted with extrasensory perception. I was just strange.
Having Asperger’s is like having the volume of life at full blast all the time. It’s like a permanent hangover... All those little autistic kids you see smacking their heads against walls? They’re not doing it because they’re mental. They’re doing it because the rest of the world is so loud it actually hurts, and they’re trying to make it all go away.
It’s not just sight and sound that are racheted up, either. My skin is so sensitive that I can tell you whether my shirt is cotton or polyester just by its temperature against my back. I have to cut all the labels out of my clothes so they don’t rub because they feel like coarse sandpaper. If someone touches me when I’m not expecting it, I scream—not out of fear but because it sometimes feels like my nerve endings are on the outside rather than the inside.
And it’s not just my body that’s hypersensitive; my mind is usually in overdrive. I’ve always thought it strange when someone describes me as robotic or flat, because if anything, I’m always panicked about something. I don’t like to interact with people if I can’t predict how they are going to respond. I never wonder what I look like from someone else’s point of view: I would never even have thought to consider that if my mother had not brought it to my attention.
If I give you a compliment, it’s not because it’s the right thing to say, it’s because it’s true. Even routine language doesn’t come easily to me. If you say thank you, I have to rummage around in my database brain for you’re welcome. I can’t chat about the weather just for the sake of filling up silence. The whole time I’m thinking, This is so fake. If you’re wrong about something, I will correct you – not because I want to make you feel bad (in fact, I am not thinking of you at all) but because facts are very important to me, more important than people are.
Nobody ever asks Superman if X-ray vision is a drag; if it gets old looking into brick buildings and seeing guys beat their wives or lonely women getting wasted or losers surfing porn sites. Nobody ever asks spider-Man if he gets vertigo. If their superpowers are anything like mine, it’s no wonder they’re always putting themselves in harm’s way. They’re probably hoping for a quick death.”
Need I say more?
Self Help Fiction
July 11, 2011
Trust me, I’ve read them all! Haven't you? Take a trip through my bedroom bookshelf and you’ll find dusty books on top of books, but nothing really fun and it looks like I need a lot of help. All of Dr. Greenspan’s books about Autism and how to educate a kid with Super Powers; activities for quirky kids (that rarely work), paperbacks written by parents further down the "A trail" than our family. Then there are the shelves of books about adoption, interracial adoption, written by kids, adoptive parents, and their siblings. The next shelf with the sure fire ways to get into heaven. (I gotta read up!) Words of Pope John Paul II, Mother Theresa, Pope Benedict, the road less traveled.
In all these ink filled pages, I have read about my destiny, Jake’s future, and ways to solidify my marriage. Most of the books about Autism explain a dark/challenging world, not much hope for independence, no free-time for parents and no real explanation of how these kids suffer moment to moment. So I quit reading!
My first real glimmer of hope was reading all the books penned by the amazing Temple Grandin! She proved everyone (me included) wrong. This genius with autism explained the confusing world in which she and Jake (and many of our friends) are trapped in, to a "T". Her symptoms mirror many of Jakes but she was able to tie emotion to them and that was life changing.
Right now, I’m reading a book, fiction mind you, that has hit the ASD nail on the head as well. Jodi Picoult and her book House Rules has explained Jake’s world through the eyes of an older kid who struggles with Aspergers symptons. I came across a page this afternoon and as my eyes glided across the words the first time I gasped. I had to reread, reread and then sit. I am amazed at how Picoult captured our ASD world in so few words and so accurately.
If you haven’t read the book, everyone should, but below is a snippet from my favorite page. This page is the view of Jacob the main character, a teen with Aspergers.
“When I was little, I convinced my brother that I had superpowers. Why else would I be able to hear what our mother was doing upstairs when we were downstairs? Why not say that the reason fluorescent bulbs made me dizzy was that I was so sensitive to light? When I missed a question Theo asked me, I told him it was because I could hear so many conversations and the background noises at once, that sometimes it was hard for me to focus on just one sound at a time.
For a while, it worked. And then my brother figured out I wasn’t gifted with extrasensory perception. I was just strange.
Having Asperger’s is like having the volume of life at full blast all the time. It’s like a permanent hangover... All those little autistic kids you see smacking their heads against walls? They’re not doing it because they’re mental. They’re doing it because the rest of the world is so loud it actually hurts, and they’re trying to make it all go away.
It’s not just sight and sound that are racheted up, either. My skin is so sensitive that I can tell you whether my shirt is cotton or polyester just by its temperature against my back. I have to cut all the labels out of my clothes so they don’t rub because they feel like coarse sandpaper. If someone touches me when I’m not expecting it, I scream—not out of fear but because it sometimes feels like my nerve endings are on the outside rather than the inside.
And it’s not just my body that’s hypersensitive; my mind is usually in overdrive. I’ve always thought it strange when someone describes me as robotic or flat, because if anything, I’m always panicked about something. I don’t like to interact with people if I can’t predict how they are going to respond. I never wonder what I look like from someone else’s point of view: I would never even have thought to consider that if my mother had not brought it to my attention.
If I give you a compliment, it’s not because it’s the right thing to say, it’s because it’s true. Even routine language doesn’t come easily to me. If you say thank you, I have to rummage around in my database brain for you’re welcome. I can’t chat about the weather just for the sake of filling up silence. The whole time I’m thinking, This is so fake. If you’re wrong about something, I will correct you – not because I want to make you feel bad (in fact, I am not thinking of you at all) but because facts are very important to me, more important than people are.
Nobody ever asks Superman if X-ray vision is a drag; if it gets old looking into brick buildings and seeing guys beat their wives or lonely women getting wasted or losers surfing porn sites. Nobody ever asks spider-Man if he gets vertigo. If their superpowers are anything like mine, it’s no wonder they’re always putting themselves in harm’s way. They’re probably hoping for a quick death.”
Need I say more?
---------------------------------------------
Hug 'em, Hold 'em and Hang on!
May 27, 2011
Just one publish this week, my brain is blown, my heart hurts and my bible holds no answers. My thoughts this week have been consumed by two things: overwhelming gratitude and confusing bewilderment.
The first, brought about when I look at our child, challenged or not, he’s ours, he’s healthy, he’s here and ridiculously happy. At the same time, our hearts are breaking as we think about babies we know battling for life.
Our dear friends, J & S have just given birth to their first child. A gorgeous and biiiiiig baby boy G. who stopped breathing the moment he was born and was promptly put on life-support. Medical experts with knowledge to diagnose the most mysterious of illnesses are baffled with baby G. My body aches at the thought of his mother, my dear friend J., not being able to hold him yet. Whisked off and intubated, he fights for life in the NICU. We also know two other babies who have undergone massive organ transplants before they can even walk/talk.
Why? What’s the reason? What are we supposed to learn from this? God? Any hints?
Heavy heart.
Sigh.
So many tired days, we question just how much we can handle? How long will we have to prompt our 8-year-old giant to clear his plate, pick up his clothes and brush all of his teeth? What teacher will we have next year? Middle school, do we have to? Some days, we are too tired to deal with the looks, comments and head-shakes we get when out in public with our Super Hero kiddos, so we stay in, alone.
In light of baby G and his massive struggle to just survive and breathe on his own, is Autism really all that bad? So our kids make strange noises, have funny habits, struggle to communicate, stim and infuriate us, but our kiddos are alive, thriving and blessed.
Kids with super powers can live very long and productive lives, touching the hearts of all those they come in contact with.
Through my emotional exhaustion, I’ve got nothing else this week except this: what we deal with, no matter how awful it feels in the moment, is NOTHING! So what if Jake wet the bed, yelled at me in public, and goofed-off in church, SO WHAT!?!? Meltdowns may be hard to handle, but really? In the grand scheme of things, he’s just overwhelmed and/or pissed.
Children are a blessing from above no matter their strengths or weaknesses. We are charged with caring for this child to the best of our ability with as much patience and love as we can muster. That’s it.
Kids are kids, little people who have yet to learn life’s many lessons. Cherish them, treat them with respect and love them. Don’t take them for granted.
If you have a moment please send a prayer up for dear baby boy G, baby boy B, and baby girl B. Innocent and pure souls dealt very difficult hands and unfair beginnings.
Then hug your kid!
Hug 'em, Hold 'em and Hang on!
May 27, 2011
Just one publish this week, my brain is blown, my heart hurts and my bible holds no answers. My thoughts this week have been consumed by two things: overwhelming gratitude and confusing bewilderment.
The first, brought about when I look at our child, challenged or not, he’s ours, he’s healthy, he’s here and ridiculously happy. At the same time, our hearts are breaking as we think about babies we know battling for life.
Our dear friends, J & S have just given birth to their first child. A gorgeous and biiiiiig baby boy G. who stopped breathing the moment he was born and was promptly put on life-support. Medical experts with knowledge to diagnose the most mysterious of illnesses are baffled with baby G. My body aches at the thought of his mother, my dear friend J., not being able to hold him yet. Whisked off and intubated, he fights for life in the NICU. We also know two other babies who have undergone massive organ transplants before they can even walk/talk.
Why? What’s the reason? What are we supposed to learn from this? God? Any hints?
Heavy heart.
Sigh.
So many tired days, we question just how much we can handle? How long will we have to prompt our 8-year-old giant to clear his plate, pick up his clothes and brush all of his teeth? What teacher will we have next year? Middle school, do we have to? Some days, we are too tired to deal with the looks, comments and head-shakes we get when out in public with our Super Hero kiddos, so we stay in, alone.
In light of baby G and his massive struggle to just survive and breathe on his own, is Autism really all that bad? So our kids make strange noises, have funny habits, struggle to communicate, stim and infuriate us, but our kiddos are alive, thriving and blessed.
Kids with super powers can live very long and productive lives, touching the hearts of all those they come in contact with.
Through my emotional exhaustion, I’ve got nothing else this week except this: what we deal with, no matter how awful it feels in the moment, is NOTHING! So what if Jake wet the bed, yelled at me in public, and goofed-off in church, SO WHAT!?!? Meltdowns may be hard to handle, but really? In the grand scheme of things, he’s just overwhelmed and/or pissed.
Children are a blessing from above no matter their strengths or weaknesses. We are charged with caring for this child to the best of our ability with as much patience and love as we can muster. That’s it.
Kids are kids, little people who have yet to learn life’s many lessons. Cherish them, treat them with respect and love them. Don’t take them for granted.
If you have a moment please send a prayer up for dear baby boy G, baby boy B, and baby girl B. Innocent and pure souls dealt very difficult hands and unfair beginnings.
Then hug your kid!
-----------------------------------------
Protect, Promise, and Perseverate
May 2, 2011
Each night Jake has a nightmare, which is frequently, I find myself tucking him into bed for the second or third time and searching for the perfect words to calm my Super Hero back to sleep. I re-wrap the burrito blankets, add the 25 lb. weighted blanket and roll. Once he’s all cuddled in and smashed up against the wall, he asks me “what happy things can I dream about tonight so I won’t be scared?”
Usually my answers are the same, night in and night out: Mommy playing, Daddy on Wii, running with Sam, amusement park rides, scootering, IPod, playing with Mikey and Miles… all the things that make him happiest. Then I promise him, “You are safe, God is watching, you are my heart.”
But in the midst of last recent events, the death of Osama Bin Laden, can I really say he’s safe and protected. I’m feeling very uneasy myself about the threat of a retaliatory strike but cannot convey that to Jake. He’d take that ounce of uncertainty and run with it, perseverate and become paralyzed with fear.
We’re all a little off-kilter, kind of nervous. There were more hugs from daddy this morning before he headed for the airport, longer kisses and wild waving until the school bus was completely out of sight. I feel like the phrase, “cherish every minute”, has a more urgent/literal meaning today, not knowing what tomorrow will bring. Jake has no idea what’s going on and I’d like to keep it that way….. right?!?
Where would we even begin to explain this sad and scary situation to him? Do we need to? I’d like to think we can protect him from this awful reality for many years to come, but is that the right thing to do? Am I just naïve?
He knows of some adults called ‘strangers’ are not very nice and we scream if approached, but this is so far beyond that. Do kids need to know that people have the capability and permission to kill one another, sometimes? We teach him, “God wants us to love everyone and we do not hurt people we love.” Heck, we’re still working on not kicking our teachers!
Talk of a predawn ambush, revenge and gunfire would scare the pants off any kiddo, but if your Super Hero thinks in pictures like Jake and there’s no accessible snapshot in his mind, visible panic ensues. You can practically see Jake's heart begin to pound out of his chest as fixation/OCD takes hold. He’d need to see the place it happened, find it on the world map, ask if Bin Laden is in heaven even if he’s mean, want to know what a gun is, who has God’s permission to kill people…. The questions would be endless. Perseveration, painful.
Am I just delaying reality here? Where do we draw the line between protecting our kiddos and/or making empty promises just to avoid perseveration and stress? Can I honestly reassure him he’s safe, when I’m waiting for the other ‘really big shoe’ to fall?
Pictures put Jake’s life in perspective. What he sees, IS. Green grass, cute dog, nice house and toys. Maybe I just need to be more like my spiritual heroine Grandma A. She possesses a complete and unwavering faith in God. No doubt, no fears, just quiet confidence. Jake would notice that too!
So let’s hug our kids a little longer, promise to love them forever, and perseverate on each minute, day, week, we have together. That's all I can do confidently, right now.
Peace, Prayers and Love during this tough time for all of us.
Protect, Promise, and Perseverate
May 2, 2011
Each night Jake has a nightmare, which is frequently, I find myself tucking him into bed for the second or third time and searching for the perfect words to calm my Super Hero back to sleep. I re-wrap the burrito blankets, add the 25 lb. weighted blanket and roll. Once he’s all cuddled in and smashed up against the wall, he asks me “what happy things can I dream about tonight so I won’t be scared?”
Usually my answers are the same, night in and night out: Mommy playing, Daddy on Wii, running with Sam, amusement park rides, scootering, IPod, playing with Mikey and Miles… all the things that make him happiest. Then I promise him, “You are safe, God is watching, you are my heart.”
But in the midst of last recent events, the death of Osama Bin Laden, can I really say he’s safe and protected. I’m feeling very uneasy myself about the threat of a retaliatory strike but cannot convey that to Jake. He’d take that ounce of uncertainty and run with it, perseverate and become paralyzed with fear.
We’re all a little off-kilter, kind of nervous. There were more hugs from daddy this morning before he headed for the airport, longer kisses and wild waving until the school bus was completely out of sight. I feel like the phrase, “cherish every minute”, has a more urgent/literal meaning today, not knowing what tomorrow will bring. Jake has no idea what’s going on and I’d like to keep it that way….. right?!?
Where would we even begin to explain this sad and scary situation to him? Do we need to? I’d like to think we can protect him from this awful reality for many years to come, but is that the right thing to do? Am I just naïve?
He knows of some adults called ‘strangers’ are not very nice and we scream if approached, but this is so far beyond that. Do kids need to know that people have the capability and permission to kill one another, sometimes? We teach him, “God wants us to love everyone and we do not hurt people we love.” Heck, we’re still working on not kicking our teachers!
Talk of a predawn ambush, revenge and gunfire would scare the pants off any kiddo, but if your Super Hero thinks in pictures like Jake and there’s no accessible snapshot in his mind, visible panic ensues. You can practically see Jake's heart begin to pound out of his chest as fixation/OCD takes hold. He’d need to see the place it happened, find it on the world map, ask if Bin Laden is in heaven even if he’s mean, want to know what a gun is, who has God’s permission to kill people…. The questions would be endless. Perseveration, painful.
Am I just delaying reality here? Where do we draw the line between protecting our kiddos and/or making empty promises just to avoid perseveration and stress? Can I honestly reassure him he’s safe, when I’m waiting for the other ‘really big shoe’ to fall?
Pictures put Jake’s life in perspective. What he sees, IS. Green grass, cute dog, nice house and toys. Maybe I just need to be more like my spiritual heroine Grandma A. She possesses a complete and unwavering faith in God. No doubt, no fears, just quiet confidence. Jake would notice that too!
So let’s hug our kids a little longer, promise to love them forever, and perseverate on each minute, day, week, we have together. That's all I can do confidently, right now.
Peace, Prayers and Love during this tough time for all of us.
