Love and a Leg Cramp

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Due to a lack of Theory of Mind, Liam sometimes struggles to know when people are happy versus upset – both can be accompanied by an open mouth. Excited versus angry are troublesome, because both come with being “loud.”

One day, we were waiting outside of a restaurant to be seated. Liam was running back and forth down the long, outdoor sidewalk to entertain himself.

I pulled my leg up to lean against the wall and was immediately gripped by a leg cramp in the back of my upper thigh. I was whimpering in pain as I tried to navigate away from the wall and into different positions that might provide some relief.

Kieran, an almost too empathetic child, grew wide-eyed: “Are you ok, Mommy?”

“I’m fine, kiddo. Ow! I’ll be okay.”

“I love you, Mommy!”

Gasping, “I love you too, buddy!”

Meanwhile, Liam kept running back and forth along the pavement. On one trip down, he actually knocked into me, “Love you, Mom!” I lost my balance and stepped down on the leg wit the cramp.

Whimpering, “I love you too, Liam. Can you watch out? You knocked into me and that hurt.”

“You’re hurt? What happened? You’re not smiling?”

“I’m okay. Just be careful not to bump me, yes?”

“Sure! Zoom!” And off he went back up the pavement running.

 

Liam’s Thoughts on School Breaks

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From when Liam started school (including daycare/pre-school) through about two years ago, he hated all school breaks, especially summer vacation. I will talk about summer break this Friday. He hated the unstructured (aka down) time. This time to relax was boring for him; he didn’t know how to fill it on his own.

In fact, until just about a year ago, Liam would come to me on weekends and breaks saying, “I’m bored.” At first, I would rush to find something for him to do. Then, I started to tell him that being bored was okay – a part of life. I encouraged him to think on his own what he wanted to do. I had to remind him frequently, before he stopped coming to me with this “complaint.”

When he was much younger, he would share that he didn’t think teachers should have off during the summer. That was too much time away from school. He also didn’t think they should have off from school on the weekends, but summers were worse.

I shared with Liam that teachers needed time with their families and time to go on vacation. He grudgingly agreed that this was good for teachers, but that he loved school and wished he could go every day.

I also shared with him that it was good practice for him to learn how to fill his time when he didn’t have a strict schedule to follow, like in school. He did not agree with me on this one.

 

 

 

Being Flexible – Strategy

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One of the best strategies that Liam was taught was how to respond when he was told that he would need to be flexible.

Liam (like everyone else) needed to learn to be flexible anytime something was not going his way: when there was a change in his routine, when he was playing with his brother or other kids and didn’t get what he wanted or when they didn’t want to play his game, and when he had a substitute in school. While many kids just “go with the flow,” it helped Liam to be less rigid when he was told that he was going to need to be flexible on a certain day or in a certain activity.

To be honest, this took a lot of practicing between him and his itinerant autistic support teacher. He was taught what it means to be flexible, what it looks like in a situation in which he wanted to be rigid, how to move to being flexible when he was already headed down the path of inflexibility – lots and lots of practice.

By third grade, I could say, “Liam, I really need you to be flexible,” and he would understand what I meant. Sometimes he would sigh, because he knew he was going to have to give up something or not get his way. We praised him a great deal and even rewarded him when he was able to start to think about someone else (Theory of Mind) and what they wanted/needed, that was causing him to need to be flexible.

This practice has served him well. While I can only say this for about the last year, Liam is now someone who hardly gets rattled by a change. This is important, as this year as an 8th grader, he has taken classes at the high school. Sometimes, one school will be on a different schedule. Other times, both schools will be on different schedules. He has learned to leave for the high school when he needs to and he catch up with his teachers in the middle school before the next class.

One day, during high school exams, he missed going over to his class when he was supposed to. While he was upset, he knew there was nothing he could do about it, except email the teacher, explain what happened, and use the additional time had due to the hole in his schedule to work on his homework and studying. He was no more upset than I would have been; probably a little less actually.

His gifted teacher shared that he is someone who just doesn’t get rattled now, even during countdown rounds! I wish that Mrs. Price could read this about him now, after all of the work she did to help him grow to be more flexible in his thinking and in how he responds to others. This is a huge gift to us all.

Karate!

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As I have shared before, Karate was the best thing that we did for Liam, as an extracurricular activity. It certainly was his Sensei who made a difference, but also everything that he learned in the program: discipline, listening, strength, confidence.

He worked hard and saw that his efforts paid off when he got stripes on his belt, or moved up to a new belt color. There were very clear expectations for him and a clear path to success.

Also, there were many other kids there who were awkward and in need of positive feedback about a challenging activity. While there were plenty who were athletic and skilled, the structure of the program kept everything focused and positive – kids worked to support each other at all times.

Liam grew in his balance, coordination, and strength during these two plus years. We are very thankful for all that this program did for him.

Kieran also had a positive experience, but maybe not in the same way.

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For him, we worked on focus, attention, and compliance. I remember one practice where he refused to listen to directions. He sat down in the middle of the session and wouldn’t move or do anything he was asked to do.

I actually went out onto the floor and physically removed him. In this, though, I sent a clear message: you need to listen and comply. For Kieran, this was a much needed skill. I’m happy to say that he worked toward more of this as he continued. He needed karate, but for different reasons – mostly discipline. It also helped him grow his patience.

Kieran and Soccer

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When Kieran was old enough, we thought he would enjoy playing soccer. He seemed to like to kick things, at any rate.

He played two different times: when he was about 4 years old, and then again when he was around 6. Both times didn’t go well.

I coached (assisted) both times, to ensure that things were fun, engaging, and that all kids were moving throughout as much of the practice as possible. The kids were nice and the parents very helpful.

The first time, the Kieran story goes like this: he refused to play in a game. The head coach got the idea that if we used Kieran’s ball (each kid brought their own ball to practice), he might be encouraged to play. I distinctly remember that Kieran’s ball was a “Go, Diego, Go” ball that he loved to run around with in the yard. So the parent put this ball into a mini-game we were having the kids play on the field. Kieran proceeded to march out onto the field, in the middle of a bunch of kids kicking the ball, pick up his ball, and walk back off the field. His comment to me as he passed by, “They tried to steal my ball!”

When he was a bit older, the season started out  better, but when he made a mistake, he became quickly frustrated. He was behind some of the other kids in his skills, but not too much so. He understood the game and was a good defender when he wasn’t worked up about the other team scoring, or a “recommendation” the head coach or I gave him. At one point in the season, when I was trying to motivate him to be a bit more engaged during practice, he expressed: “So you want me to run up and down this field with the ball, over and over again, to get better?”

Thinking this was a breakthrough, of sorts, I replied, “Yes, that’s what you do in soccer.”

His response: “Boring.”

He never asked to play soccer again.

Today’s sport: Swimming

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Swimming is something that all of the kids still enjoy. I grew up with a pool and love being in water.

Liam was born in a tub – natural birth in a hospital in Allentown, PA. Midwives and a Doula. It was a great and safe experience.

Liam did not love water, just because of that, unfortunately. When we enrolled in Mommy and Me swim classes at the Y, his low muscle tone (aka skinniness), caused him to always feel cold (hence the wet suit he’s wearing in the picture to help keep him warm). He stopped crying during swim time and learned to stop cringing when we put his face under water. He hated the ocean at 1-1/2. The sand… sensory overload. He wouldn’t walk across it. At that age, the sound of the ocean was also overwhelming.

Eventually, he grew to enjoy swimming and even the ocean. Although he is still easily cold, he is someone we cannot get to come out of the pool on a hot day. In the ocean, if there are jellyfish or anything else in the water, he is freaked out. On a clear day, he will play for hours.

Kieran has been a fish since he first started taking baths. In fact, we knew we were in trouble when he was jumping in the pool at age two without an adult present and got “talked to” by the lifeguard.

He doesn’t “swim” in the traditional way. He looks like a shooting star when he tries: arms and legs going out all over the place, him not moving in any direction. Water parks are his favorite, even after he almost got sucked out of an inner tube during a long slide ride, which scared me to death. Swimming is the one activity that tires Kieran out – that he’s willing to do for long periods of time without giving up, or being frustrated by (unless we make him try to swim strokes).

Swimming was a great, low impact way for the boys to build muscle strength. During Mommy/Daddy and Me classes, which we also had Mea participate in, we connected through lots of great snuggles and laughs as we sang and clung to each other – to stay safe. It was a great way, actually, to teach Mea (our daughter through adoption) that we could be trusted to keep her safe – so helpful with bonding.

We have many family videos of swimming in our “blue bag of water” in the backyard. We try to take vacations that include swimming in some way. Swimming plays an important part in our family life.

Organized sports week – baseball

When I was growing up, I didn’t get to play many sports. My brother did, but it wasn’t as popular for girls to play when I was young. When I did play, it was just two seasons and because we didn’t commit to summer camp, I stayed on JV. By my senior year, it was important for the coach to play younger girls who would eventually move up to varsity. It wasn’t that special of an experience.

When I first started teaching, I started coaching two, then three sports. I wasn’t the best coach, but I loved coaching and think I had something to contribute to my teams. I grew in my confidence, especially in volleyball and softball.

I really felt strongly about the importance of playing sports. So when Liam was old enough, we tried him in t-ball. Now, we had learned that playing team sports was difficult for children with ASD. Remember central coherence? Well, being able to see details and not the “big picture” makes one great at math, but not soccer, football, lacrosse… team games. I thought, maybe it would help Liam’s social skills to try out baseball though. At that age, it’s not a “team” sport, as much as one that just gets kids to work on a team and develop skills.

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Although Liam loves running now, he was a slow runner at first. During one practice, the team had to run out to the outfield fence and back. Liam was still running out to the fence when most of the team was on their way back. Cleverly, he turned around and started to run back with the team. Well, didn’t I jump in and tell him he had to do it right? He was not happy with me.

Liam couldn’t throw far, but he could bat off the T. He was afraid of getting hit when someone threw him the ball. Overall, t-ball was boring. During games, Liam was the lead expert (who had quite a few followers) who used the field dirt to draw. At least Liam was doing math – ha! The coach’s son was also someone who required extra patience. Overall, it was a great team to be on – Liam didn’t stick out too much, except for the running.

He announced after the first game that he wanted to quit. I said no. I shared with him that he never had to play again, but that he had made a commitment to the team for this season and had to finish it out. He wasn’t crying during games or becoming overly stressed when going to practice. He just didn’t like it. My husband and I had a huge disagreement over this – he thought Liam should be allowed to quit if he wanted to.

Maybe I was being mean. Around this same time, even Liam’s developmental pediatrician commented that I was really hard on Liam. Honestly, I would have said the same thing (about quitting) to any of our kids. When Kieran wanted to quit t-ball, and soccer (which I will talk about later this week), I said the same thing. I have learned that sometimes Liam has to deal with “this world.” It wasn’t always going to work for him to retreat from a situation. He wasn’t being hurt or asked to do something that he wasn’t able to do. So I made him finish.

Did the season get a lot better? No. But he did learn that he could do something hard and be a part of a team. He has never played that sport again, but he has been on many other teams and has even participated in three sports to date (which I will talk about when we get to middle school stories).

Maybe I wasn’t the meanest mom on the planet after all.

Strategy Friday: Games

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From when Liam was 3-years-old, playing games was a part of his therapy.

Through playing games he learned turn taking, which then helped model for him how to take turns in regular conversations.

He learned to take an interest in others by asking what game they wanted to play and then being guided through the process of asking small questions of them while playing.

He learned to not want to always win and actually say, “Good game,” afterwards, whether he won or lost.

If all else failed in “making a friend,” playing a game was a common activity he and a peer could participate in. As Liam’s ability to play games grew, he became someone that others wanted to play with – for good healthy competition.

Games also gave Liam a way to create. The picture above is an example of two expansion levels Liam created for Monopoly. He used places he was familiar with from trips or activities that were special to him to create new properties.

Not all of the games Liam made, at first, were easy to understand. We had to share with him that he wasn’t explaining enough of what was in his head, to help us know how to play the game.

This was essential feedback to provide him. It helped to develop his “theory of mind” – one’s ability to take someone else’s point of view. Theory of Mind is often a difficult skill for individuals with ASD. They can be “mind blind” – not being able to estimate or accurately predict what others are thinking.

We and his peers offered him feedback about what they understood and didn’t understand about a game he had created. He started to learn how to “anticipate” where someone would have difficulty with his “rules.”

We will find out if he was successful in his latest game tomorrow. He created a video game with two peers for Technology Student Association (TSA) competition. Working with two peers and creating a successfully judged video game would show that all those years ago, starting him playing games to related to and connect with peers was a great idea.

Kindergarten ethnography

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During the time when Liam was in Kindergarten, I got a grad school assignment to observe language use in children. I took the opportunity to go to Liam’s school and notice his language use there, as well as notice it at home while playing with his brother.

First, I observed Liam with some male peers in his class. Liam was playing with some Legos. Liam seemed content to play by himself, even though the other boys played together. One boy in particular called to him, to have him notice what he was playing with. “Liam, look at this!”

“Liam, look.”

Unfortunately, Liam never looked and the peer eventually “gave up” trying to get his attention.

Then, we had Liam move to play with a group of girls. It was neat to see how these girls used language. They kept drawing Liam into their conversation. One girl even said, looking into the camera and smiling, “Liam, let’s play your house.” She held up a blue box. Liam replied, “My house is not blue.” End of game.

At home, I observed Liam playing with his brother. They struggled to “interact” or take turns playing. Kieran would initiate. Liam would react. End of circle. Kieran would re-initiate, Liam would not respond. End of circle. Liam was definitely more comfortable playing on his own.

Then, Kieran asked Liam if he wanted to play Mario and Luigi. Liam agreed. It was pretend play, of sorts. They interacted, acting out the video game. While it certainly wasn’t “typical”creative play, such as that suggested by the girls in Liam’s class, having that “script” to follow and expand upon gave Liam a way “into” this game.

It was very interesting to see how Liam engaged with each of these different types of children. I am always grateful that Kieran used language differently than Liam, so he could model and push Liam to use his language in novel ways.

Kindergarten decisions

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In some ways, making decisions about Liam and kindergarten were easy. His birthday is not close to the cut-off, so “when” to send him was not really much of a decision at all.

Where to send him and for how long, those were our difficult decisions.

Ultimately, while we lived in a great school district, they only offered half day Kindergarten. For that reason, mostly, and for small class size, we decided to send him to a private Kindergarten. We paid for Liam to have enrichment each afternoon. He got additional art, Kindermusik, “gym,” special trips throughout the community, and library. They were all classes of no more than 10 students. During the morning, his class was made up of 18 students.

We especially liked the enrichment options because we had done music class and Little Gym classes previously. Liam loved opportunities to bounce on trampolines and freely run around without too many other kids around. We had one of this birthday parties at a bounce place, and another at the Y where kids could swim. These were things he liked to do. Music, as I have mentioned before, made a great deal of sense to his math brain.

While art was not his favorite because he could get messy, if he was allowed to use a paint brush, or the teacher helped him with the messy part, he seemed to enjoy it.

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The Kindergarten class had two adults. His main teacher, Mrs. Commons, was absolutely amazing – when you close your eyes and visualize a young Kindergarten teacher, you are probably seeing Mrs. Commons. We had learned that firm and structured, but also kind was the best type of teacher for Liam. Too firm and he would feel anxious. Too “loose” and Liam would be stressed by the “chaos.” Mrs. Commons was just right – to be sure!

A few months into the year, Mrs. Commons wanted to talk with my husband and me. She said that between herself and her classroom aid, then Liam’s Personal Care Assistant (PCA), which he only had for a few hours each day, three adults were too many in the room. No one knew who should help Liam – they were all offering him support and it was a bit too  crowded. I shared that if we said we didn’t need a PCA, it would be about 6-9 months of paperwork to get someone back. Mrs. Commons was confident that she and her assistant could help Liam and that he would have a successful year. So we let the PCA go. No more PCA by Kindergarten. We never looked back from there with this type of support.

It was the first sign that Liam was growing and he was moving in the right direction. Certainly, he has had many ups and downs, and not everything about “school” has always gone perfectly. In general, though, school has been one constantly encouraging place for Liam. We hold every one of his teachers in our heart for how each of them have helped him learn socially and academically, and become the successful young man he is today.