You’ve been away for 144 days. Yes, we have little reunions for appointments and such, but your bedroom is empty. The bed is just how you left it, unless I’m sitting on it, teary and reminiscing. I miss the madness, some days. Seeing your feet hit the floor at 100mph every morning. Watching you bravely navigate the overstimulating days.
I admire the artwork you proudly mounted inside your custom-made wooden frame, the drawings you created to process your feelings of fear and uncertainty when hospitalized and all the too-small suits hanging in the closet.
I dream about what could have been and what is still to be, not unlike other parents, I guess.
I know you are in the best place for you, but the “hard stop”, after being “on” every minute of every day is emotional. Everyone asks, “How are YOU doing mama?” That answer also changes minute to minute. It doesn’t matter that I know you are in the best place for this season of life, I still have so many feelings. Well-intended folks whom I love dearly, remind me of this as a way to stave off my tears. Choose practicality over pouting.
Feelings that range from:
Pride in all the hard work you have done and are doing during this time apart.
Fear that you are scared and might hurt yourself.
Joy that you are doing this thing called life, without me.
Sadness that you are doing this thing called life, without me.
Regret that you had such a hard time at home, trying to manage expectations with your capabilities.
Empowerment that I now have time to dedicate to my career.
Regret about all the mixed messages you still struggle to make sense of.
Reminding myself that we did all those speeches because you are driven to help others. Praying it wasn’t my pride or ego driving you.
Relief that we are all still alive.
Hope that you will find yourself and learn to live free of so much fear.
Wondering how God chose you to be mine, knowing I would not be enough.
Prayerful that we all find peace.
Indecision is my new state of mind. Unless it’s work, music or church related, my answer is “I don’t know.”
What do I like to eat when I’m alone?
What should I do now?
Should I call someone?
Is this what loneliness feels like or is this depression?
What do other people do with all the hours of a day?
Do I like to read?
Can I sit still?
What type of clothes do I like?
Will I ever push a luggage cart (Jakey’s job) without crying?
What type of movies do I like?
Should I go grocery shopping? What should I buy?
Am I cool or a nerd?
During the last 17 years, none of these questions mattered. Literally, everything I did was to plan for, react to, strategize or ignore “everything Jake”. The answers to all these questions were rooted in avoiding crisis, behavior management and staying alive. There wasn’t a lot of gray area and no room for my feelings.
So I’m starting over and trying to figure my “free-time” self, out. It’s hard to do at 50! I almost feel like I have to reinvent myself. So far, I’ve decided to focus on my music, faith/spirituality/gratitude and being “fully present” in every minute. For too many years my attention was divided; Jake 80% and 20% for the rest. Poor Chris landed in the rest too. I’m so lucky, SO DAMN LUCKY, he stayed to fight through this with me.
This all feels very weird, as I sit quietly at the beach, one of my (and Jake’s) favorite hideaways. Amazingly, I discovered one of my favorite parenting rules, actually helps me cope during the dark times.
Autism parents and teachers often ask, “How do you stay in control when you are so scared or angry.” My answer is always, “I’m the best parent when I imagine that Jesus is sitting right next to me, seeing me. I have to think, would He approve of how I’m speaking, reacting to or behaving with my child. Am I parenting from love or fear?”
I take this idea with me everywhere now. It helps me stay focused and give love.
Driving Jake home for the holiday today, our conversation was calm, clear and concise. This is a welcome change and happens when he's regulated and favorite rituals are expected. Take a walk back with me to Thanksgiving real quick.
As Jake grew tired on the last day of break, he became pretty "chippy". He told me his brain can hear me but can't understand... even if he would repeat it to himself. That led to a behavior.
Then 2 weeks ago, we picked him up for a doctor appt. Many hours in the car led to his frustration again... "Mommy, I can hear you but my brain can't understand you at all." I would repeat myself then tell him to repeat it back to me. Even as the words crossed his lips, fatigue and anxiety prevented him from fully processing and understanding.
Ok... now today, driving home. We were talking about EVERYTHING, as we always do, and I was sensing some anxiety bubbling near the surface. So I went to work. "Jakey, you know last time we were together you taught me something again! You said that when your ears hear me, you brain can't always understand. What if your eyes did the work?" With that I handed him a small ring of laminated photos of the first couple days of our break.
"Mommy, this is so nice. Thank you for making this. So when my brain can't work, I can just look at this ring of pictures and understand!!" I then asked if he wanted pictures for his entire break and he enthusiastically yelled, "OH YES, that would be really nice. Thank you mommy!!"
(For the record, I cannot take all credit for this idea. I visit Jake's behaviorist independently and we brainstorm next steps. This was Dr. Matt's idea, that maybe pictures would be more palatable than having to process words. The amazing Dr. Matt is MINE and you can't have him!!!
Anyway, I'm just sharing this as the very busy holiday season begins and we are all walking into decorated homes and churches, with mysterious packages, and lots of glittery & sparkly things to look at. That could be overwhelming enough. Don't push.
When Jake is seeing all this input, we don't even talk to him. He just takes brain photos of everything and soaks up the environment. Hoping this helps you with your super sensory kiddo during this long break out of routine.
Have a very blessed holiday... Merriest of Christmases and Happiest of Hanukkahs!
Just writing this really quick before I forget this conversation with Jake. The other day, while Jake was typing up what we call, "a brain dump" we started chatting. He very pointedly asked me to change some language I use.
Since I am constantly watching every word I use already, I admittedly was surprised and slightly exasperated.
He started, "When I'm upset and having a meltdown where I may be physically dangerous, throwing my body, jumping and running around, don't tell me to stop because that will make me worse."
"What do you want me to say when I see you so upset and maybe dangerous?"
"I want you to tell me to go take a break, in a nice voice."
"What's the difference between saying 'stop' and 'let's go take a break'?"
"When you say stop it makes me think I did something wrong."
There is so much fear during the teenage years that every word, even the tone of every word matters. The look on your face matters. How you hold your head matters. Where your arms are, matters. Protecting your teenager's self esteem is critical, every teen, every minute, especially those with multiple disabling challenges like Jakey.
First and foremost, this trip on the water was by no means about a "sail" boat. I'm referring to the amazing staff onboard the Spirit of Washington Brunch Cruise that led and followed us around the ship to make sure Jake had fun and I was relaxing.
This decision to take the cruise started with regret. Jake has been having a particularly hard time lately and he totally didn't deserve such a treat, but I did! When he's on restriction, I'm on restriction and suffering just as much. So his poor behavior choices really have a way of controlling everyone ... I think it's this way for many Autism families who have kids/teens/adults who cannot be left alone. Regardless, I booked it, I wanted to go, so we did.
As we approached the dock, I saw the Odyssey Cruise (a low flat floating dining room) and a giant Yacht parked just behind it. I showed Jake lower boat and said that's where we were having lunch. He was excited but just couldn't peel his eyes away from the spectacular Yacht lurking around the corner of the dock.
The time came to board and I approached the Odyssey and showed our tickets. The man said, "This is not your ride, THAT is! You are on the SPIRIT." I think Jake nearly jumped out of his shorts! I made the man double check. Whoops I messed up my reservation.
So there we went onboard the SPIRIT and were led to our small table-for-two by the window... as well as just feet from the dance floor and DJ stand. Jake started dancing in his seat and getting very silly. He then told me, "I'm afraid I'm going to get out of control here," and with that he was gone. He bounded across the room and approached a group of staff and I could hear him say, "Um I am about to lose control and my table is too close to the dance floor and I have autism. I need a quiet table, please." Now I nearly jumped out of my pants with pride. I couldn't believe, given his mood swings lately, that he just independently advocated for himself.
Moments later a woman met us and told us we will be much happier downstairs. It was very quiet there. We descended to the lower floor and were met by three gorgeous men. One manager and two waiters, I believe. All very concerned about Jake's happiness and safety. Half the room was filled and the other half, not even set.
We were instructed to choose the most comfortable seat. So we placed Jake with his back towards the rest of the room and I sat across from him. About 40 other people were seated on the other side by the buffet and Jake was so quiet and calm. The manager told us not to hesitate to ask for anything,... enter Charles.
This young man was so much more than a waiter. He approached with the biggest smile and best attitude. He shook Jake's hand upon introduction, "You, my friend, can call me Charlie." We placed an order for water and lots of Diet Coke, my addiction, for me! Mr. Charlie even brought me my own pitcher in case he got tied up on the other side of the room. He didn't want us to 'want' for anything.
Jake was fine with water, but Charlie wasn't. He peppered me with questions about carbonation, sugar and fruit juice. I answered and could see the wheels turning. "Jake, come with me, we'll find you a drink." They emerged from the bar with a spectacular fruity delight. "This is the Jake Splash," Charlie announced, "it has passion fruit juice, pineapple, oj, cranberry juice and topped with strawberry and a slice of pineapple."
We next chatted about the level of music, the booming fabulous voice of the DJ, and general order of events for the lunch. Charlie listened and gathered every bit of information he could. He didn't "half-listen" while jotting things on a pad. He listened and then acted.
Moments later, the buffet was opened and there was Charlie, again. "You just hang out a bit, I'll come back and take Jake up when the line dies down." Uh..... ok. Jake was beaming in the light of constant attention from Charlie.
Ten minutes later, there he was, "Jake let's go get some food." He held his salad plate, pointed out and named every fancy shredded, cubed and split veggie. Named the dressings. Jake filled his plate and handed it to Charlie. This fabulous waiter continued to name all the fancy meats, casseroles, and ask Jake about his likes and dislikes all while toting Jake's overflowing salad plate. They were back at the table and I was still in line. Charlie arranged the silver, unfolded the napkin, poured more water and offered more help. I'm stunned.
Then I see Charlie talking with the manager Michael and then back to the DJ. Minutes later he is at our table. He reported that he asked the DJ to give him a warning before he cranked up the music because it could upset Jake. As soon as Charlie got the "signal", he came to escort us upstairs to the top level of the sailing paradise. It was quiet, sunny, and 85 degrees. He had me so relaxed I actually requested a glass of wine and another Jake Splash for the beast.
Charlie was running up and down 3 flights to get our drinks and check on us 3 times during our time up top.
We stayed up top for a spell then headed back to our dining room. No one was dancing so I hung out near the bar, chatting with Charlie as Jake was near the DJ. I turn to look and the chef Don was dancing with Jake on the dance floor. They started with the Chicken Dance, bc Jake was screaming some chicken song, and then a slower piece came on. Don insisted on trying to show Jake how to dance slower to the beat and I was cracking up. Charlie instructed me to stay put and he's "got Jake". He moved closer to watch and supervise Jake's mood and safety.
Near the end of the trip, I thanked Charlie for taking such care with Jake and learned he has a decade of experience caring for people and children with intensive needs. He is such a gift. We discussed the importance of Jake having role models that "look like him" and needs a "big brother". He then offered to help us. Gasp!
We were getting ready to leave and up comes the manager, Michael. He handed me his card and said Jake is always welcome on their ship, with this crew. He told me to let him know when were coming back and when Jake is old enough to have a job! "This group of strong African American men will take care of him."
..... and now I'm almost crying.....
Enter Charlie, again. He hands me a bag with the Jake's splash glass and a tiny bill for $7.00. Yes $7, only 7 dollars. I was sure this was a mistake so I "mistakenly" added a bunch of money to that little tip line. He also included contact info.
This was not just a lunch cruise. This was a brunch that empowered Jake and he felt so accepted by the folks he so seeks validation from. I actually got a chance to relax and just let Jake be loved.
I swear I do not work for the SPIRIT of Washington. I have not been paid to write this. But when I'm moved, I must write. Thank you Don, Michael and Charles. You will be seeing us again.
Following a pretty intense week, and raw blog post, I'm happy to say I have some good news to report. (Read about last week here)
Again, more proof that if we just listen and watch, our kids/young adults, tell us what their bodies need. Much like when our bodies need protein and we crave meat, Jake's body is telling him what his body NEEDS.
In the wake of a couple months of growing, very long naps and increased aggression, we increased one of his medications. I know, many people are afraid to try meds for fear that they will "change" their child. It WILL change your child. Carefully prescribed and planned out medication will give your kiddo a chance at learning and clarity.
I realize this is a hot button issue, but I stand by medication. I've learned not to judge others' parenting choices, as I believe we all do what we think is best and what we can handle at the time. However, if your child was suffering from the flu or migraines, you wouldn't think twice about meds to help. Why not try anything that might help balance their chemicals to increase chances at learning and success.
I'm not a doctor, I'm speaking from experience. As Jake was spiraling into this latest trip to the "dark side", his anxiety increased too. I thought it was because his body was changing, getting bigger and he's afraid of change and growing into an adult. Some of that is true, however, he would get very upset telling us his "memories are gone, just black."
Sit with that a minute.
His brain was so clouded with unbalanced chemicals, it was impeding his ability to control himself, focus in class and remember basically anything for 5 seconds. I regret not figuring this out sooner, (I know, stop being hard on myself) but it took a med increase to solidify this for me.
We increased one med, after just 3 days, Jake confirmed we made the right decision through amazing conversation.
"I can see the ice rink again. I can see my old school, the hallway, the lockers and the old music room! I see my old bus drivers and route numbers. My memories are coming back," he reported excitedly!
Jake's insight has always been incredible, we've discussed everything, EVERYTHING, since he was born. I used to walk around the house narrating my actions, the reasons, as well as emotions to match my facial expression, and he's learned over the years.
So when he talks, we listen, very closely and look for root causes. This time, because it was medicine related, we did take a little longer to take action.
If you are hesitating about medicating your child, please read this and re-read it again. The right medicine can free your angel's brain and open up dark doors that have been closed until now. He is so excited for his memories to return and have good days at school!
I'm open to conversation about this, feel free to email any time.
We headed out to find a new suit for Jake. He has a couple of appearances in the spring so he needs a lighter suit and we had a lovely gift card burning a hole in our wallets.
The weather is dreary and damp so Jake put on this huge wool sweater plus a fleece lined jacket and headed out the door.
I always laugh when we enter the dress-clothes stores because salespeople don't really know what to do with us. My hair was piled on top of my head, I had not makeup on so the purple bags under my eyes enter the room first, and I'm in yoga pants!
The salesman approached us and then with a slick deke of a pro hockey player, walked past us, after getting a good look. Then, I guess guilt got the best of him and he turned around and came back. "Can I help you?" I only answered that I needed Jake sized so we could look around at suits. (Little known fact, I used to work in a fine men's clothing store back in the day.) Perplexed, he pulled out a tape, sighed and took a measurement over Jake's sweater then directed us to the appropriate rack.
We quickly spotted and chose a great light grey suit, ON SALE! Jake was doing his little happy wiggle as he eyed the suit... the ties... the shoes... the suits... the ties... the shoes... the pocket squares! The salesman disappeared and came back with a dress shirt for Jake. He handed it to Jake with directions to put it on, in order to try on the suit coat.
Off Jake goes to the changing room with ONE direction.
As I waited and glazed over while watching the awful news blaring from the TV, Jake emerged from the dressing room wearing the dress shirt. The salesman promptly tried slipping the coat onto Jake's arm. It went up a little bit and then seemed like it was tight.
Jake said, "Whoa, it's tight with my sweater on."
The salesman was very surprised and confused.
I guess we didn't tell him to take off his wool winter sweater first, then put on the dress shirt. He did do exactly what he was instructed.
Next it was time to try the pants... "ok, let's try the pants now." Jake promptly started to drop his drawers in the middle of the store! <Gasp>! "Right here?" he asked with his jeans unbuttoned and his underwear cresting the waistband... "NO NO NO!"
To me this was CLASSIC Autism at its finest. I love when these lessons are taught naturally and spontaneously. Poor salesman had to learn this the hard way... now on to the shoes... what could go wrong?!?!
This kid... my heart....
He's determined to meet former President Barack Obama and Michelle Obama. Well he's convinced they will hire him for a job one day too. Here's his latest effort to snag the attention of the Obamas.
Hi and thank you Mr. president for helping us with pride in our nation. i think it's awesome to see a man who looks like me, that is successful in our population. So how can we work together to give other young African Americans hope like you have given me? Every young person needs to feel important and "heard". Your Champions of Change program did that for me. I'm a young man. I do motivational speeches and educational speeches. I was a Champion of Change in September 2015 because I overcome my challenges everyday to teach police about Autism. I think it is important to teach police about Autism because they need to know how to act with people who are different from them. I also think it's important to understand that people with autism are gifted on this earth. Everyone has a special purpose. I want to help you spread a message to everyone. So let's work together. When is a time to meet in person to see how I can help you. Even People with disabilities are able to change lives. Can I talk to you privately with mom in your fancy building like your office. Thank you for giving me hope and by the way I liked your African American dance that I saw online. Thank you have a good night.Sincerely Jake Edwards PS I am Kenyan and German just like you, your mom looks like my mom we have things in common.
We like to believe most people are kind-hearted and want to help. Admittedly, I'm not one to ask for help often, but I do sparingly and reserve it for big jobs.
Our "Team Jake" is the family we've made out here on the East Coast. It's made up of doctors, coaches, former teachers, police officers, our training team and friends. We text and visit occasionally, and I try not to ask for much.
I called in the troops to reinforce Jake for some mature and controlled behavior. Jake had a rough night and was very upset at bed time because he left his iPhone in our car which was overnight at the repair shop. He didn't get physically threatening, didn't break anything, or aggress towards me at all. This is a new change and a very welcomed one as stress and puberty change his personality every minute.
So this morning, I sent out an email to "Team Jake" and asked if they had time to send Jake a text of reinforcement for controlling himself in a very upsetting situation. I was thinking maybe one or two folks would actually have time to complete the request, so I'd be thrilled with that.
TWELVE of our Team Jake members sent him a text. So when he looked at his phone after school, it was filled with encouragement and congratulatory texts. This is how to guarantee repeating a desired behavior. Don't ever be afraid to ask!
So thank you to all of team Jake: Julie, Annette, Laura, Laurie, Betsy, Andrea, Janelle, Shelly, Mike, Matt, Peter and Tara, for being our East Coast Family! We could never raise a Super Hero on our own.
Stay Miracle Minded friends. Always acknowledge the blessings.
Tums for breakfast.
Ten Hail Mary's.
Tears mixing with lotion on my face are making a slimy mess while I sit.
Crying, as Jake takes flight.
Checking Life 360 GPS every 15 minutes, well 10 minutes, well....ok 5.
Let's be real... my phone battery may die because I keep refreshing the app to check Jake's location as he embarks on his first "pack ride" on his bike.
He's strong, he's fast, but also sensitive. He doesn't like too many people in a room near him let alone a bunch of strangers, inches away, moving at 15mph.
As the sun came up, Jake joined 15 men at All American Bicycle Center, established and experienced riders, for a group jaunt through the back streets of our county. He's admittedly nervous. This is a kid who has done speeches in front of hundreds (thousands) of people with no fear, is nervous?!
His bike coach Matt is the ride leader. He appears calm but always does. Introduces Jake to the group as his friend and good rider. Never mentions Autism. I'm thinking how amazing is that? (Then I was glad I briefed the group while Jake was out of ear shot. He's impulsive.) Thinking, what if I hadn't mentioned anything? Would he be accepted as just another rider? But then if he swerves and nails someone? They need to know to keep a little more space. I think I'm ok.
The tums I had for breakfast, is not mixing well with the Diet Coke I'm mainlining at McDonalds. I wait.
GPS: "Moving near H.C. Road. You are 19 minutes drive from Jake."
Ok. He's still moving. Looks like he's at an intersection. I hope he can get his foot off the pedal. It's his first ride with clip pedals. He's agile, but if he's distracted it could get stuck. He could fall into traffic. Is there a shoulder on that road? How close do the cars come? What if he hits another rider? They're still stopped. Maybe it's a water break.
I was anxious this morning, but think I did a pretty good job of hiding my jitters. I offered little input, short instructions, no real emotion.
I was mostly calm, mostly, and gave him room. At home he was asking lots of questions, in the car he reviewed his "post-bike BBRT" (Brain Battery Recharge Time), I think for my benefit. This way he won't have to tell me to stop talking.
Once at the meeting place, he wanted distance. He's the only one there with "mom" so I gave him space.
"Moving near J.C. Road. 18 minutes drive to Jake."
I wonder if he feels better now that the endorphins have kicked in. This group rides slightly faster average pace than Jake is used to. He'll push himself to keep up. Prepare for anything this afternoon.
Stopped again. It's not an intersection. Oh no. I hope he's ok. Please don't be a flat... or worse.
My tears have dried as my mind races. Go Jake. I'm staring at the green dot on my phone, willing it to move so I know everything is ok.
"Moving again near J.C. Road. 15 minutes drive to Jake."
I texted Chris that I was surprised by my tears. He replied, "and the sun came up again."
He knows me. He knows watching this boy fly brings tears of pride, fear, excitement and did I mention fear.
I should be working. Need something to distract my brain. Is it this hard for all parents? When the kids stretch their wings? Will this get easier? I guess it has to. Trying to find a deep breath... fly baby, fly.
This is how acceptance and understanding happens. One ride at a time.
When I say our kids see and hear everything, I literally mean they see and hear everything. I chalk it up to part of his Autism Super Powers, but today he struggled to use them for good!
We were riding in the car and I was chewing gum. I could feel this man-sized-observer in the seat next to me staring a hole through my head. I figured it was leading nowhere good, so I ignored. At the next light, I turned to look at him and he whipped his head in the opposite direction while snorting to hold back a laugh. Happened a block later and the light after that.
I asked what he was doing and he could barely talk.
"BWAHAHAHAHA" (I hear). Leg slaps included, just for added impact.
"What?" I asked.
"Your mustache has wrinkles, now! BWAHAHAHAHA!"
"I asked what on earth?" He answered that I have wrinkles from my lips now like an "old lady grandma." I tried to save myself and told him the wrinkles were from 40 years of playing flute and piccolo and don't have a mustache. I really tried to stay calm and not crack up.
"BWAHAHAHAHAHA! Does your mustache get in the way of playing flute?"
This isn't exactly a One Minute Miracle, but many connections were made during this conversation, admittedly at my expense.
I'll let you all know where to get the cheapest botox and a close shave.
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