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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: The Accountant

Gregg and I watched The Accountant the other night. Going into it, I didn’t know what it was about. I mean, I’m all about campy action movies, Ben Affleck is on the movie poster holding a sniper rifle. Gregg had already cleared it through PluggedIn to make sure that nothing in it went against our viewing standards. I’m in. I don’t necessarily need to know anything more.

Let me tell you my reaction to this movie:

Wow.

Wow.

Ben Affleck plays an autistic man. We get flashbacks of his life as a child.

Wow.

I know that people tell you that if you’ve met one person with autism then you’ve met one person with autism, that they’re so different from each other that it becomes impossible to pin down a standard theme. However, before anyone on the movie said autism, when we’re just introducing ourselves to a little boy and his parents, Gregg and I had it called.

There are enough similarities for autism and autistic children that any parent of a child with autism is going to immediately be drawn to Ben Affleck’s character and immediately want to fix his world.

Wow.

And, I have to say, that if you’re seeking a layman’s an understanding of the autistic mind, watch this movie. The writers, directors, and Affleck somehow hit it. Spot on. Watch it. You might learn something about this world in which some of us navigate daily.

And, you get awesome action coupled with some tense thriller moments.

Win/Win.

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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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Autism: There’s Something To Be Said About Community

When our son Johnathan was in the first grade, he had a friend ride the bus home with him and have a play date. Scott, our autistic son, had never expressed a desire to have a friend over, but on this day, he came to me and said, “Why can’t I have a friend come over, too?”

I asked him, “Do you have a friend?”

Understand that at this point, Scott still couldn’t distinguish boys from girls, and children other than Johnathan didn’t come with names. We believe, to him, his 2nd grade classmates were just a sea of faceless noise-makers. But, he surprised me by answering, “Sure! Thomas!”

Thomas and Scott had shared classrooms since kindergarten. Like Scott, Thomas has an autism diagnosis. So, I contacted Thomas’ mom. She was thrilled to have Thomas invited over to someone’s house for a play date and as soon as schedules allowed, we got the boys together.

That began my friendship with his mom. We were two moms of special needs children trying to navigate the school system, insurance companies, and social skills, and we realized, subconsciously, that we needed each others’ friendship and support. I have wonderful mentoring friends, both of whom have older autistic children, who have been a constant source of support and encouragement for me. I was blessed to be able to offer the same kind of friendship to Thomas’ mom, and to share with her what my friends had taught me.

A few months later, we were invited to Thomas’ birthday party. This was the first time Scott had ever been invited to a school mate’s birthday. He was so excited to get to go.

Thomas takes part in a program called STRIDE, which is a special needs extra-curricular activities program in his community. He’s able to play soccer, basketball, and participated in the Special Olympics. So, at his party, there were several special needs kids and their parents.

For the first time ever, I sat at a party surrounded by complete strangers and completely relaxed. I didn’t worry that Scott would say something completely off-base, possibly even insulting, to one of the adults. I knew if he did, they’d get that it is just a black-and-white boy with no filter. I didn’t worry that he didn’t want to take part in any of the party activities and how the other kids or parents would think he was “weird”.  He was absolutely and totally accepted when he walked into that house and nothing he said, did, or didn’t do would be taken in a negative light.

I watched a mom with a non-verbal son wearing a helmet sit in that room and relax. I watched Thomas’ mom enjoy a house full of people who had come to celebrate her son’s birthday and relax. These were our people. Our children seemed to understand each other. Johnathan, who is two years younger than Scott, has lived his life with an autistic brother so he thought nothing off about how the kids played or how they interacted — or didn’t interact.

We have a supporting and loving extended family. We have good friends who love us and love our children. We have an amazing church family with excellent teachers in the children’s department. I’m not taking anything away from any of those people in our lives who know us and love us who don’t have special needs children. But what I learned that day is that there’s something to be said for a community – a like-minded, shared community – that cannot be duplicated.

Scott at Melissa, Thomas’ mom

The community comes with a sense of understanding that doesn’t have to be spoken, with empathy that has no strings attached. Parenting a special needs child can be very lonely, very scary, very disheartening — and when you enter that community by way of a meeting or party or just coffee with other parents like you — for a time the burden, while it may not be lifted, is lighter — and at times even shared.

Last December we moved from that town and are now two hours away. Thomas’ parents have made the drive here two or three times, and we’ve made the drive there two or three times. Our boys are still friends who look forward to seeing each other.

Over Christmas, we went to a party at Thomas’ house. He didn’t know we were coming, and the look of joy on his face when we walked in the door made the two-hour drive worth it. Immediately, the boys headed up to Thomas’ room. For over two hours the played and played, and I practically had to drag them away from there.

This school year, Scott has made a friend named Hunter. The other day, I heard Johnathan ask him, “Who is your best friend? Hunter or Thomas?”

Scott, seemingly appalled, replied, “You can’t categorize friends that way, Jeb! You just have to cherish them for who they are.”

That simple statement brought tears to my eyes. There was a time when we wondered if Scott would ever even know how to have friends. I never thought that instead he would so simply and profoundly inspire me to remember to cherish my friends for who they are, in the special needs community and out.

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Autism: Parenting “Failures” and Celebrating Milestones

I remember when our nineteen-year-old daughter, Kaylee, was starting Kindergarten, and we worked tirelessly to teach her to tie her shoes before school started. She aced the skill in no time and went to her first day of school with shiny pink and silver tennis shoes tied by her own hands.

Johnathan, our eight-year-old, mastered the skill at four. As with most things he learned early, he watched and observed and took in while we taught his brother, Scott, and then would come up beside us and just do whatever we were teaching his brother, who is two years his senior.

Scott, though, just couldn’t do it. We tried and tried to teach him until he was frustrated and we were frustrated. After months, we just quit trying. We didn’t see the point in frustrating him and frustrating us over something that he simply, for some reason, could not do.

tae-kwon-doWhen Scott started Tae Kwon Do, we were able to teach him how to tie the first part of his belt, but not the second part (the one that forms the knot). That was probably the most frustrating, because it is the same motions. There wasn’t even a logical reason he couldn’t do it. Even at 10-years-old, he brings me his belt to tie onto him.

Sweatpants that tie at the waist have to be tied loose enough that he can pull them down to use the bathroom at school, but tight enough to keep from falling down on their own.

And — we buy Velcro shoes or Crocs. Period. If they can’t be slipped on or fastened with hooks and loops, we didn’t buy them for him.

I’ll be honest and tell you that this is an area I actually felt like I’d failed in. The older he got and the longer he went without being able to tie, the more I wonder if not forcing the issue would hurt him in the long run.

As with so many “symptoms” of autism spectrum disorder, when we were filling out all the forms and questionnaires in seeking the “official” diagnosis, we were amazed when we came across a section about tying shoes and tying knots. Suddenly, the fact that he couldn’t tie his shoes made sense. Obviously, it’s part of the spectrum like his sleep issues and his wandering away issues. We hadn’t done anything wrong! We hadn’t perpetuated a situation by continually trying to the point of frustration! It must be a developmental thing within the spectrum.

I cannot explain to you the relief we feel as parents as we have constantly received affirmation of symptoms that explain areas where we felt like we failed as parents. Our 10-year-old brilliant child couldn’t tie his shoes, and we quit trying to teach him. We’d added another check next to the failure box.

But once you understand that it isn’t you – your parenting – that it’s his brain and his development, it’s like this box of power is opened up. Okay! It’s autism! It’s a multiple step process for a brain that can only process single steps! How, then, do we come at it in a different angle so that he can learn how to do this in a way that makes sense to him?

For the tying of shoes, it meant turning to his occupational therapist — someone trained to teach children on the spectrum how to tie shoes. And, you know what? It took her about six weeks to teach him. SIX WEEKS.

That little check next to failure just got completely erased.

Here is our boy tying a shoe by himself for the first time, at 10 1/2 years old. Celebrate with us. This is a pretty big deal in our family.

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Autism, Girls Can Be Mean, and Angry Birds

I’ve always wanted to train my kids to entertain themselves away from electronics. I have no objection to electronics. How am I supposed to see the brilliant David Suchet as Hercule Poirot, or Skype with my brother in Australia, or even type this blog post without electronics? But, I also know how to look out the window of a car and enjoy the scenery, or pick up a book, or make eye contact when having a conversation — those are the kinds of things we think of when we say we want kids to not rely on electronics for entertainment.

scott angry birdsI remember the first time I saw anything about Angry Birds. Scott, who is nearly 10, was about 4. He saw a big display of stuffed birds and pigs in a store at Christmas time and wanted one. A few months later, someone referenced something about Angry Birds, and I remembered the display. That’s when I put them together in my head that it was a game.

Scott, though,  had become obsessed with playing it. He asked me several times for the next year or so to put it on my phone. I had no idea how he even knew about it, because he had no means nor method by which to know about it, yet he knew everything about it.

One day, we were out of town at a friend’s house. Now, Scott, socially, is WAYYY younger than nearly 10. At this time, he was probably 6 years old, but socially, maybe 3. MAYBE. That’s probably giving him a little extra credit for his social abilities. So, here’s my socially inept 6-year-old, and there was a little girl his age at this house who had 2 friends over playing with her.

You may not see this, but in my experience, girls can be mean. They have a social pecking-order dynamic even when they’re just 6. And Scott, who only wants to play the way he understands it (and the way his little brother knows how to play) kept trying to engage this girl and her friends. But, he’s clearly different and clearly overly gullible and kind of shark bait in a social dynamic kind of way. Finally, they sort of ganged up on him and in the little girls are mean way, began to tease him viciously, when all the while he innocently thought they were playing his game his way.

scott st patsI couldn’t take it for more than a second. As soon as I realized what was going on, I pulled out my phone and loaded Angry Birds onto it. Judge me, but Scott didn’t have a clue these girls were being so mean. He doesn’t have the kind of filters that tell him that someone isn’t sincere. When I told him to quit letting them do whatever it was (I can’t remember specific details), he insisted they were his friends and were being nice. So, I handed him my phone.

Immediately, the girls ceased to be important. He had his long coveted Angry Birds game! In no time, these girls were all sitting around him, helping him play. I hovered, as I tend to do with him in groups, and made sure their interest was sincere, and it was. Soon, social pecking-orders designed as only little girls could design them faded away and they were all playing Angry Birds together, both with the phone and with pillows and blocks, and getting along.

angry-birds-movie-trailer-2So, while I tend to want my kids to entertain themselves away from electronics, I do have kind of a soft spot in my heart for Angry Birds. Even though PluggedIn’s review has the following sentence in the summary:

But what more were we expecting from a cartoon based on a phone app that shoots miffed birds at pigs?

…my kids have been counting down the days to release day, and I’ve committed to a 7 o’clock “Mommy Date” that will involve Angry Birds Happy Meals followed by a trip to the theater.

I’m excited and I hope it’s as much fun as we’re all convinced it will be.

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