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Monday Morning Coffee and Chat 8/5/19 – How Difficult Was It To Send Your Autistic Kid to Space Camp?

Hello! Welcome to Monday morning coffee and chat!

Monday Morning Coffee and Chat! Today I’m answering the question,”How difficult was it to send your autistic son to Space Camp?”

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Autism and Navigating Social Needs and Desires

I recently took my boys to a birthday party at a friend’s house. The party theme was movie night and the kids were given shoe box size plastic containers containing a plate with pizza, a drink bottle, a plastic popcorn box, little containers of candies and crackers and such, and glow-in-the-dark necklaces. They’d originally planned to have the party outside and project a movie onto the side of the house, but rain drove everyone into a basement room that was set up with pillows and cushions and little chairs. Adult-sized chairs lined the back wall and a sheet hung on the wall to serve as the screen for the projector. It was quite well put together and very clever.

Parents got all the kids settled downstairs, and the dad started the movie. After making sure Scott and Jeb had their boxes of food and drink secure in a way that they wouldn’t spill, I went back upstairs with some of the other moms to get myself some food and a drink when, minutes later, 11-year-old Scott came stomping upstairs carrying his little plastic box.

We’d already had an issue with the pizza. The mom had checked with me beforehand about what brand of pizza to get (we go to Bible study together, so she was very careful to make sure that Scott would eat dinner that night), but they’d bought a thin crust instead of a regular crust, and he would NOT eat it (which was a bit frustrating because she’d gone to such careful lengths to make sure Scott would enjoy himself). So, we were already on the edge with his coping skills, because he was hungry and starting a spiral.

It took me several minutes to understand the gist of the problem. As the dad set up the DVD and the projector, he let the previews play on the screen. Scott saw the preview for a Disney movie he’d never seen (Ratatouille, I think) and wanted to watch that instead of Toy Story. Like I said, he was already starting to spiral, so normally he’d grudgingly accept the movie and go on with life, but not this night.

Not wanting to force an issue in a crowded room with a bunch of kids, I hugged him to give him some joint compression (because that releases dopamine and norepinephrine – which help him chill in a spiral) and talked him into making himself a big plate of veggies and ranch dip – then gave him another bag of the (never served in our house but always longed after) Doritos. Then I settled him on the couch and handed him my phone.

Something about his demeanor gave me pause, though. Despite the fact that he was about to sit back with unrestricted YouTube power, something seemed off. I said, “Are you okay with this?”

He shrugged and said, “I mean, I guess.”

Again, that didn’t feel right. So, I said, “Scott, how do you feel about being up here instead of downstairs with the other kids?”

He moved his little plastic box off his lap and set my phone down, then drew his legs up and covered his face with his hands. “I feel so left out!” he wailed.

That really made me stop.

There is an assumption that we’d incorrectly made in that even though Scott doesn’t outwardly exhibit a desire for a social presence, and even though he often removes himself to be alone, that didn’t mean that he NEVER wanted to be socially active. He just didn’t know how to make it happen at this moment because so many things (in his mind, so they’re valid points) had gone “wrong” with the evening.

So, I took him into my lap and squeezed him some more, and said, “Hey, if I go down there with you, will you sit in my lap and watch the movie with me? It’s been so long since I saw Toy Story and I’d love it if we could watch it together.”

He jumped up with much enthusiasm. “Okay!” he said, and I carried his box while we went back downstairs. Thankfully, a big chair against the back wall wasn’t occupied, so I settled into the chair and Scott climbed into my lap. A little while later, a chair next to mine was empty, and Scott, obviously resettled after so much contact with me, moved into that chair.

After the movie, we sang “Happy Birthday,” gathered cupcakes to take home, and left (we were the only non-homeschooled family there, so it was a little late for a Monday night and we left with the party still ongoing.) Scott and Jeb both proclaimed how it had been the best birthday party ever, and talked about it even the next morning.

Social situations are difficult for many autistic kids., and Scott is no exception. Other kids are loud, they understand social cues, and they don’t always want to play by Scott’s rules. So our assumption has always been that he simply did not seek it out and did not want it.

How many times have I unintentionally perpetuated a situation where he ended up feeling “so left out!”?

I worry now, a bit, that since I’ve never forced social situations beyond gentle encouragement, that I might have been keeping Scott from doing something he really wanted to do but didn’t know how to make happen.

I’ve now resolved to ask him, with clearly defined questions, how he feels about interacting or not interacting with peers.

Since isolation is so often the preference over everything else, the questions won’t be “would you rather”, because almost always, he’d “rather” be on his own with a screen. Instead, it will be, “How do you feel about —,” which will give him an opportunity to analyze and try to convey what it is that he’s feeling — either, “I don’t care” or “I feel so left out” – or anything in between.

Because now I know that I need to ask.



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Parenting Autism: The Surprising Moments of Overwhelming Emotion

I’m normally a rather pragmatic person. I rarely am overcome with emotion. I handle everything in life with a stoicism that most people cannot understand. My daughter jokingly says I don’t “feel anything” — and longs for memories that don’t exist of me crying through the pinnacle moments in her life.

So, the first time I watched the first two episodes of of the show Parenthood, and watched one of the sets of parents struggle with the diagnosis of their son on the autism spectrum, the overwhelming emotion that had me sobbing into my couch pillow really surprised me.

Really surprised me.

After this wave passed, I sat there, stunned, and wondered what had just happened. As I analyzed it, I realized it was because, for the very first time in this autism journey, I found someone, albeit a fictional someone, who knew exactly what we’d been going through and how I personally felt — even if those emotions were buried deep inside a pragmatic stoic core.

I couldn’t keep watching it. I made it through the first season, but it did too much to the inside of me to keep going.

That was six years ago – right as we were beginning this autism journey and I didn’t know what our future would look like. Recently, I saw that Netflix had it in the lineup, so I rewatched the first episode.  Now, I didn’t end up sobbing into my pillow, but I definitely felt tears slide down my face as those raw feelings of fear and anger and uncertainty felt fresh and new all over again.

I know, in my pragmatic self-analyzing way, that what overwhelmed me was this idea that I’m not alone as a mother, we’re not alone as parents, and Scott isn’t alone as an autistic kid trying to work his way through this world that doesn’t operate properly on his plane of existence. Because, this isn’t an easy journey. It’s hard, and it’s unfair, and we have to work through all of these episodes in his life where he just wants to die because life here is so hard and he’s so very tired of trying to be this triangle peg fitting into a round hole.

Added to the turmoil that comes with that, one day he’s going to be a grown man and every single think we don’t do right could very possibly negatively affect that in a much, much bigger way than it would with our other children — we know this. It is part of this whole life. And we accept it and steadfastly cover him with prayer about it.

One thing that any parent of a child with medical/special needs knows is forms. Everywhere we take our child as it pertains to their diagnosis or condition, comes with a brand new set of forms that all ask the same questions over and over again. And, every time I fill them out, I find that those are the times when my emotions over being the mother of this incredible kid who suffers so much in this world hit me in extreme.

Part of my issue is because I have to fill out form after form, or squiggle pencil marks into little ovals over and over again, as if to claim, “THIS IS WHAT’S WRONG WITH MY SON!”

I don’t want to focus on all the things that are wrong, that set him apart. I want to focus on all of the things that make him remarkable and his accomplishments that supersede all expectations from before. But yet, that’s not what the forms are looking for. So, I start off angry — angry at nothing and no one in particular — just an emotional reaction to something that should be very vanilla.

I’m weird. I know.

And then I start feeling that now familiar overwhelming feeling that we’re not alone in this world. If this question exists on a standardized questionnaire, then someone else must have experienced it, too! Probably lots of someones. And suddenly, the idea that someone out there – this time NOT fictional – understands, can emphasize, could come to me one day and say, “Listen sister, don’t worry. Here’s what I know. Here’s how we rocked it. Here’s how we saw that God had our backs the whole time!”

And I start crying. Me, this stoic unfeeling person who is always taking charge in emotional situations because she’s the one who can think clearly — suddenly I’m sobbing over a stupid form that the therapist or doctor is barely going to glance at because there are enough check marks or squiggly ovals filled in that the answer is obvious.

Not because I’m angry because I have to fill it out again — but simply because it means we’re not alone. I’m not alone. Scott’s not alone.

And someone out there understands.


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Autism, Third Wheels, and a Hammerhead Tadpole Trike

Our son, Scott, has been struggling to ride a bicycle for the last four years. Even at age eleven, he has training wheels. There’s still a wobble with training wheels and no real sense of security. If I tried walking alongside him and holding onto his bike to keep it steady, he would quickly let go of the handlebars and cling to me as if his life depended on it. With each wobble, absolute panic would generate terror that would freeze him from all movement. For four years, he was incapable of riding his bicycle.

We didn’t really know why.

Scott has a desire to be like other kids. He had a strong desire to ride a bike. His little brother has been pedaling without training wheels since about age seven. His friends in the neighborhood ride bikes all over. The best Scott could do was lie down on a skateboard and wheel himself along with his friends. Of course, this made him a bit of a third wheel.

We thought he might “grow out of it,” or that maybe just a bit more practice and exposure to the bike would lend him more confidence. For a long time, we thought it was weak muscles. If he only worked on his core, he’d have the strength to master the bicycle. Over and over again, every spring and summer, we kept trying to encourage him as he faced his fears and attempted to ride this bike.

It finally occurred to us that this was more autism related than a lack of strength or skill.

One of the senses that affects kids with autism is the vestibular sense. Our vestibular sensory system helps our bodies maintain balance and an understanding of spacial orientation in the world. Your vestibular sense keeps you upright, allows you to bounce and catch a ball, and helps you balance while you ride a two-wheel bike.

As we researched autism and all of the senses the condition affects, we discovered that to Scott — to his brain’s situational awareness in the world where all of his senses come in unfiltered and out of sync — his perception is that his life did depend on him clinging to me. Much like vertigo can attack someone with a fear of heights, as soon as those wheels wobbled even fractionally on his bike, his brain immediately told him that his life was in peril. No amount of encouragement could redirect him long enough to focus on his other senses and control the bike.

To our little third wheel, he felt like he was drowning while fleeing from a shark.

Hammerhead Shark
Hammerhead Shark

We struggled with what to do. Continue to encourage the bike? Insist that he keep trying? We found ourselves kind of on the fence about the best way to go forward. Next summer, he’ll turn 12 and will be experiencing that somewhat halcyon time between elementary school and middle school — yet he still couldn’t ride on bikes with his brother and his friends up to the local library or corner convenience store.

Recently, a friend hosted a lunch that allowed a couple of us with kids to get together and give the kids a play date while we moms enjoyed a beautiful afternoon of fellowship. This friend had an adult-sized “delta” trike – that is, with two wheels in the back. Scott got on that thing without hesitation and rode it like a pro – flying down the road as fast as he could pedal. Fearlessly. FAST and with a lot of strength. For the first time in his life, he rode.

Scott Rides a Delta Trike
Scott Rides a Delta Trike

Seeing him do this taught us that he isn’t afraid of riding – or even riding at high speeds. He isn’t weak. As soon as the large, wide, stable wheels of the trike supported him, he was completely fine.

Our third wheel son needed a three wheeled conveyance.

Gregg started researching trikes and autism and specifically the vestibular sense. He learned that the trikes with the wheels in the back, the delta trikes, while generally very stable riding in a straight line, can very easily tip over if the rider brakes and turns at the same time. The problem is that the front wheel is at an angle to the direction of travel and when the rider brakes, all of the body weight and centripetal force and kinetic energy of the rest of the entire trike transfers onto that lone front wheel which is already experiencing angular momentum. Flip!

In his research, Gregg found and purchased a set of plans from Atomic Zombie for a “Hammerhead Tadpole Trike”. A tadpole trike has two wheels in the front and the rear wheel is the braking wheel. This puts two wheels at a proper configuration to the circumference of the turn while the braking drag is all in the rear most part of the trike. This is called a “hammerhead” tadpole because the configuration of the steering linkage and the front wheel braces resembles a hammerhead.

hammerhead design
hammerhead design

The design has a complex Ackerman steering system that involves a principle which allows the innermost wheel to turn more sharply than the outermost wheel in a turn. That helps the trike remain upright and stable during a turn, even a fast braking turn. It is designed to accommodate riding through snow and ice, so Gregg knew that a similar design would work for Scott on grass, gravel, sand, or roads and sidewalks.

We just needed a couple of “donor” bikes and a good bike frame to build it. We live on Fort Knox, Kentucky, so he took the plans he’d bought to our neighboring town of Radcliff to Outdoor Ventures, a bike shop just a few miles up the road from us. They were very interested in the project and wanted to do what they could to help us get our young son onto his own trike. After talking with Gregg and meeting with Scott, the owner basically donated some bikes and bike parts to the project.

A coworker who Gregg has known since Afghanistan connected him with a friend, Al, who had the welding tools and skill needed to weld all the elements of the trike frame together. He obtained some steel and riding lawnmower steering bearings from the local Rural King and ordered a few spherical bearings just in case. After ordering various pieces and parts, collecting different bikes and bike parts, Gregg prepped what pieces needed to be cut or ground down and sanded, inventoried all of the pieces and parts, and delivered them to the welder, Al.

Gregg cuts apart some donor bikes
Gregg cuts apart some donor bikes
Donor bikes and bike parts
Donor bikes and bike parts

Donating all of his time and talents, Al welded the parts Gregg brought him and built the frame of the bike.

The "hammerhead" frame mocked up with tack welds and clamps prior to final welding
The “hammerhead” frame mocked up with tack welds and clamps prior to final welding

Being a true pro, Al gave the hammerhead an even wider stance for greater stability and strength.

the complex steering

Gregg purchased racing forks and mag-wheels from Outdoor Ventures, put a comfortable wide seat on it, tightened the brakes to hair-trigger responsiveness, and let Scott give it a go.

Scott loved it so much that he insisted he didn’t even need it painted. Despite that, Gregg took it all apart again, sanded down and smoothed out the areas where it was welded, teflon taped all the threads, and puttied all the spaces with JB Weld. Then he primed it and gave it a bright neon green top coat — Scott’s favorite color.

This past Sunday, our family rode our bikes/trikes to church together for the very first time.

We’re having to battle the words that other children say when they see the hammerhead for the first time. “That looks weird!” “What is that?” At first, these comments made Scott come home and not want to ride again. He thought the kids were mocking him, but we also heard them say, “I want a 3-wheeled bike, too!” “Can I ride it?”

Despite that, when he gets on the seat and starts pedaling and re-introduces himself to the freedom of wheels and the feel of the wind against his face, he realizes it’s okay if kids stare and ask him questions about it. Because he’s free. He’s having a real adventure, and little boys need adventure so they can grow into confident men. And he is able to join his brother and his friends as they storm the neighborhood on their bikes.

Gregg took them out in the neighborhood every night this week, chasing the sun, and watching him bike up hills, across grassy fields, and down the road without even slowing down, never afraid, ready to keep going forward. Last night, as they were putting the bikes away, Scott said, “Thanks for building this for me, dad. I love it.”


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Autism: Boys of Summer

Our son Johnathan has been desperate to join a baseball team. We promised him when he turned 8 that he could start playing baseball. So as February turn into March, I started looking through school papers more carefully to make sure that I didn’t miss the notice for baseball sign ups.

When we got the announcement a couple weeks ago, we were thrilled to see that this league has a special needs baseball team. Scott cannot bounce a rubber ball and catch it. He also can’t throw one in the air and catch that. These are physical limitations that have to do with the wiring in his brain – things is occupational therapist knows about and works with. (Though, she did tell us that he’s spot-on with a spitball, and we’re waiting for him to get old enough to possibly join a shooting team, because she said she’s never seen any kid with his accuracy before. Spit balls — who knew occupational therapy could be so fun.)

He’s 10. Kids his age have been playing ball since they were 5 or younger. We fully planned to put Scott on the special needs team.

Yesterday, we packed up the boys up to go sign up for baseball. On the way there, Gregg told me that he felt like we should let Scott sign up for a regular team. His reasoning was that he doesn’t want to apply limits that may not be necessary to apply. He said he would rather give him an opportunity to play a regular team and if he fails, move him to the special needs team.

I’ll admit that I was uneasy about that, because beyond his physical limitations with ball catching, Scott has never played team sports, and struggles with more than two-step directions.

At the community center, I filled out the paperwork and just hesitated over registering Scott for the older team. It didn’t feel right. So, we asked the coach if Scott could play on the younger team with his brother.

The coach explained that league rules allowed for younger kids to play up, but not older kids to play down. That’s understandable. You could stack a team with young Babe Ruths in order to sweep the series — I get that. Disappointed, I said that Scott had autism and had never played before. The coach immediately assured us that an autism diagnosis would probably allow for him to play down and stay on a team with his younger brother — provided we had an official medical diagnosis. He would take it to the coaches council and seek special permission, but he’s never seen it denied for autism.

We’re elated. This is a great compromise. We still have the power to move Scott to the special needs team, but we’re being given an opportunity to let him try to participate without applying any limits to his abilities — because while he can’t bounce a rubber ball and catch it, we don’t know what he can do with a bat gripped in his hands or a glove giving him a larger surface area in which to catch the ball.

We have about a month before any true practice begins. The weather is nice here in Kentucky, as winter is giving way to spring. I know that Gregg and the boys will be outside as often as possible, toning muscles and building hand-eye coordination as the two prepare to start playing baseball for the first time.


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Autism: Things Are Not Always As They Appear

I recently joined my son, Scott, for lunch at his school. I met his class in the hallway walking to the lunch room, and walked with them into the room. Instead of sitting at the table that the rest of his class gradually filled up, he took me to the back of the lunch room. “I like to sit in the detention corner,” he explained.

He was THRILLED that I came. He was almost manic about my presence, and jibber-jabbered all the way into the lunch room. But, once we were there, he didn’t say another word. He just started eating his lunch, tackling one food item at a time. Occasionally, he looked at me and smiled while he reached over and pet my face, but didn’t really talk. Lunch time in the cafeteria is for eating – not for talking.

I surveyed the room, people watching as I tend to do. I took this picture, understanding the emotional reaction people would have to it. When I showed it to my mom, she did the same thing I imagine most of you are doing – gasping and saying, “That’s so sad.”

Only, it’s not. Not really.

Scott chooses to isolate himself in the lunch room. His class is way across the cafeteria from where Scott is sitting, at the first table in the room. He doesn’t want to sit there – next to kids who are playing or talking or not eating. Lunch time is for eating.

He didn’t sit down and get rejected by peers. He didn’t ask to sit somewhere and get told to go away. He isolated himself so that he could get down to the business at hand – to eat without distraction.

As neuro-typical normal people, we tend to want to apply normal emotions to those on the autistic spectrum. The fact is, they don’t necessarily have normal emotional reactions, normal thought processes, or normal perceptions. They are so very different in the way they think and perceive situations. To Scott, in the loud, distracting, room filled with way too much visual stimulation and an abundance of conflicting smells, sitting way back in the “detention corner” (likely a name he applied to it taken from one of the middle-school books he reads) is way LESS stressful than sitting with his class. He has no need for social interaction with peers during a meal time. He has a need to eat.

I personally appreciate the school allowing him the opportunity to isolate himself and cope with the environment the best way he can. I know in some schools, a strict “sit with your class” rule would apply. Scott’s in an environment filled with people who respect his autism and do their best to accommodate it. We are so thankful to God for the teachers and staff because of it.

We are visual people, and in a rapidly moving world, we tend to rely on pictures to tell a thousand words — especially those pictures intentionally designed to generate an emotional response. Sometimes, though, things aren’t as they appear at first glance. A picture like this could speak to the hearts of a world filled with loving and generous people,  generating a viral movement to bring that poor boy with the green noise-canceling headphones friends for lunch so that he can feel loved and accepted like the rest of us neuro-typical normal people.

Instead, we know he is loved and accepted and therefore is allowed to sit alone at lunch. It’s not always — let me rephrase that. It’s rarely ever that I’m able to take in the world the same way Scott does.  This one afternoon, though, as I surveyed the room and took the picture, I was able to see the world through his eyes and – for just a moment – get it.

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