Failed Test

Here’s a funny story about Liam and Kieran.

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Remember that Liam was hyperlexic. When he was 3, his daycare teachers would ask, Did you know Liam can count to 100 and knows the alphabet out of order? Yes. It made us proud, but we didn’t want to put too much stock into it, yet. Counting to 100 and knowing the alphabet that early were great, but were based on his memory, not necessarily his ability to do math and read. We also didn’t want to make too big a deal so that when things got tough later on (comprehending and inferencing), he didn’t go from a kid who got tons of praise, to someone who got none. I will share a lot more about reading later on.

To the story! One afternoon, Liam decided to “test” Kieran on his alphabetic knowledge. He drew up a chart with all of the letters and a box for checking (if known) and Xing (if unknown).

At first, Kieran thought the game was fun. Liam would take a large, foam letter to Kieran and ask him what letter it was. Kieran started out trying hard. He got checks on A and B. He missed C, then D, and realized that he wasn’t going to do well moving forward.

Liam gave him time between each response, as he went into the kitchen to record “the correctness” of each answer on his chart. I can only imagine what Kieran was thinking while Liam was out of the room.

By E, Kieran was not trying as hard. He was guessing letters much later in the alphabet, almost as if he was testing Liam back – what will be the reaction to this response? By G, Kieran responded, tiger. H was elephant. Now Kieran was just playing with Liam and his “test.”

It was a little funny to hear Liam say to himself, as he recorded that Kieran had not identified “H” correctly, “Kieran, you are not that smart.”

That’s when I quickly jumped in to share with Liam that maybe it was a little early to give a 2-year-old such a test and that he could just teach his brother the letters, instead of testing him on them. Liam smiled and went back into the playroom to play with his brother.

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Friends through Video Games

Video Games have done a lot for Liam. They earned him friends.

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See, while Liam was not able to keep up in playground games, while he was not able to maintain conversations about others’ interests for more than 30 seconds, while he was not able to wow peers with his smooth social skills, he was able to impress them with his gaming.

This mattered among kids. He actually became “popular” among other kids who played video games because he could beat New Super Mario Bros. When they could not get past a certain level, he could help them beat it. When multi-player games were being played, kids fought to have Liam on their team. No more, aww, he doesn’t play good.

In 5th grade, Liam’s math teacher exposed the class to Scratch programming. Liam creates many games through Scratch, under the name Superpi2. Other kids have followed him and given his video games great ratings. In fact, Liam took an Advanced Scratch Programming class through Johns Hopkins during his 7th grade year, and earned an A.

Playing video games well has earned Liam a great reputation among Kieran’s friends – they definitely look up to him. Kieran has always wanted Liam at his birthday parties because he is proud of his big brother, and enjoys the attention he gets from the other kids who admire Liam too.

Kieran actually shared with me earlier this year: Liam is famous in our school. He’s a cool smart kid. When I work in the middle school, I actually introduce myself as Liam’s mom as, who knows what a Reading Supervisor is anyway? Kieran also has shared, I’m a smart kid who’s not cool.

What Kieran doesn’t realize is that in 6th grade, Liam was not cool either. There will be plenty of time to tell you about 6th grade later this year. It wasn’t until last year, especially with Technology Student Association (TSA), when Liam was the only 7th grader who qualified for nationals. Moreover, he was the only middle schooler who won an award, twice, at nationals.

So, while no one calls the house to talk with Liam, and no one invites Liam to parties, they do clamor for Liam to be on their team in school, or in TSA, know he is the middle school kid who takes math classes at the high school (with sophomores and juniors), and nominate him to be an officer (treasurer, of course), of their clubs. This is a wonderful way to be popular in our eyes – and it makes Liam very happy.

Low Muscle Tone

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I spoke a little about low muscle tone earlier this week. Today, I want to share some of the strategies that we were given to us to support Liam’s floppy-ness.

First, occupational therapy. I wasn’t always able to see what was going on in there, but his therapist definitely worked on his core and to strengthen his ability to sit up for longer amounts of time. I would highly recommend karate, too. Karate was so amazing for Liam that I will have to include it in a separate post. In both, he also learned coordination, which was much needed.

Second, we offered Liam movement breaks when he needed them. Sitting in one place for any length of time, as we all know, is not good for anyone. The longer he sat, the more likely it was that he would start to lie down. At the same time, for Liam, sitting on an exercise ball was not a good idea. He was not coordinated enough. Some kids I’ve worked with have liked “cushioned bumpy” seats, not balls. Preference will depend on the kid. The same is true for weighted lap pads or vests. It will go back to what the child likes and doesn’t like based on his/her sensory profile.

Third, we started to use “expected” and “unexpected” to describe Liam’s behaviors. “Liam, it is unexpected that you lie on the floor during circle time.” Or. “Liam, it was expected that you sit up to listen for directions – thank you.” This replaced our natural tendency to say, how he acted was odd or weird (unfortunately the latter came from peers quite a bit). Expected and Unexpected were helpful for Liam to understand how the world was interpreting his actions and behaviors, without also offering him the world’s judgment or condemnation.

Lastly, we started to use the directive: “make your body match.” For instance, Liam would lie down on the pew in church. I would say, “Liam, can you ‘think with your eyes’ (look around to take in information for processing), and ‘make your body match?'” This would help him “see” what others looked like, how he was “out of sync” with the expectation for his actions for this location/situation, and know what was expected of him.

Now, this doesn’t mean that he didn’t have to do a lot of leaning against me or his dad during a long church service (we still have to talk about leaning to this day, because it is even more unexpected for an almost 14 year old). At least he wasn’t lying down. And, he was getting great information about the world, to act upon.

Some of these ideas come from Michelle Garcia Winner’s “Social Thinking” curriculum. His itinerant autistic support teacher made use of this curriculum. I’m thrilled to say that we have incorporated it into our current district, although Liam doesn’t use it anymore.

Every once in a while, I will use one of these terms with him, to help him calibrate on our/the situation’s expectations – he knows exactly what we mean and what do to, as a result.

 

Biting

 

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I’m going to write about Kieran only this morning. Remember, Kieran is showing signs of ADHD. We did not know at the time about the ODD, but looking back he did exhibit signs.

Here is a chart of other “disorders” that can be co-morbid with ADHD (http://www.adhd-institute.com/burden-of-adhd/epidemiology/comorbidities/):

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What we saw was aggressive behavior when he became frustrated.

Kieran, to this day, gets very easily frustrated. We only rent his trumpet because I wonder every time he gets a new piece of music if the instrument will survive his wrath. He invariably will start to bang the trumpet on his leg, take it apart, and then lubricate every inch of it. This past time, however, we had a mini-breakthrough in that we reflected on how frustrated he was upon getting his winter concert music, but learned it so well that he had a successful concert. It seemed to click that, if he just took one line at a time and practiced daily, he would indeed improve. AKA, he didn’t need to play the piece perfectly, all of the way through, the first time he practiced it. There was a little less banging and oiling this time around. Concert music has yet to be handed out, though.

Early on, Kieran also became frustrated, as many other kids do, when he could not express his thoughts and feelings quickly or adequately enough with his limited repertoire of words. He is still more apt to punch or kick Liam if he is losing a game, than eloquently share that he doesn’t like losing.

When Kieran was still in the infant room at day care (the same day care that wanted to hold Liam back, interestingly enough), he started to become frustrated with other kids who would: take his toy, invade his space, not play the way he wanted them to… anything that annoyed him, really. He started biting, just one or two times. The director’s recommendation was to move him up to the 1-1/2 year old’s class. He was about 13 months at the time.

We trusted her recommendation and Kieran seemed to immediately settle down. He was so in awe of the “older” kids – what they could do, how they talked, the new games and activities they had, that he stopped misbehaving. He could do and play the way they did, and his language increased daily! He didn’t become as frustrated.

It was the first time that the word “bored” had been used with him. I do think that this word can be used an excuse at times, that we should teach our kids that it’s okay to be bored – it’s a part of life, and/or that it’s an overused term, especially with gifted kids. But there he was, enjoying life – being challenged in a positive way. No more biting (for now).

Personal Space

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Kids on the autism spectrum have different reactions to touch. Some like firm touch. A soft, tickly touch can make them feel like bugs are crawling all over them.

Other kids think that a firm or (perceived) hard touch is hurtful. For instance, on numerous occasions, a classmate will walk by Liam’s desk through narrow rows, bump into him accidentally, and cause him to shout, “OW!” Or, my husband will grab Liam by the elbow or shoulder to “steer” him away from something or get his attention. The way Liam starts to yell and cry, we look around to see who is noticing how terrible we are as parents.

Some kids on the spectrum need people to respect their personal space. Imagine a bubble protecting a child, at least 12 inches in circumference. Getting into their personal space is threatening. It’s something the teacher or peer should talk with the child about, before “entering.”

Kathryn Erskine’s Mockingbird (2010), a fiction book about a female character (upper elementary age) with Aspergers, has a great chapter about “Personal Space.”

“I hate recess even though Devon says it’s supposed to be my favorite subject and there is no recess once you get to middle school so enjoy it now. But I can’t enjoy it because I’m surrounded by sharp screaming and it’s too bring and people’s elbows are all pointy and dangerous and it’s hard to breathe and my stomach always feels really really sick” (p. 26).

“Josh is walking toward me and he’s smiling even though he runs into William H.’s Personal Space and knocks him down. You shouldn’t walk into someone else’s Personal Space. Especially not William H.’s William H. is autistic….

You shouldn’t get in someone’s Personal Space.

What’s it to you?

I don’t know what that means so I say again, You shouldn’t get in someone’s Personal Space.

He puts his hands on his hips and his nose wrinkles up, What of it?

He must mean, What IS it. Personal Space is this. I step right in front of him-I even step on his toes-to show him where his Personal Space is” ( p. 28, 29-30).

Liam is what’s known as a close-talker. He is very touchy and doesn’t respect personal space, unintentionally. He has been known to touch teachers (not recommended), teacher’s desks, others’ everything – mostly without really intending to or meaning any harm. This tendency has definitely gotten him into trouble and made others feel a bit uncomfortable.

I can empathize. One of his dear friends from very early on once was so excited to share something with me that he greeted me with both hands on my chest. Knowing that he was too young to understand why this was wrong, I just moved his hands into my hands and continued listening to him excitedly share his news.

Liam’s therapist once shared a strategy with him that worked well. Liam loves video games (as I have mentioned), so she shared with him to not be a “space invader.” She taught him what was too close and what was the just right distance for talking and playing with others. It was very helpful be able to say to Liam, you are being a “space invader,” in a given situation; he would immediately take a step back and apologize to the person he was “invading.”

Selfishly, I really enjoy having an almost 14-year-old that is still affectionate. I know these days will not last forever. I will take all the hugs and heads on my shoulder that I can, while they are still being offered.

 

Getting Sleep

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I feel very strongly about sleep. I understand that having kids in general keeps people from getting regular amounts of sleep. Our experience was probably typical, but felt urgent to me.

Liam’s sensitivity to his environment clearly affected his sleep. As is every new parent, we were scared to have him sleep on his stomach, although we noticed if he slept that way on one of us, he was very peaceful. We didn’t dare have him sleep in our bed.

We started to have success with swaddling, although, as with many babies, he escaped by the end of the night.

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We also started to experiment with having him lay on his side. He startled so easily so as to constantly wake himself up. Although he sucked his thumb, he didn’t always do so to lull himself back to sleep.

Visualize, if you will, all of our velcroing and swaddling to try to keep our child asleep on his side.

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Falling to sleep was not his issue. It was staying asleep. He finally slept through the night at 10 months. He would consistently wake up at about 5:30 a.m., ready to go for the day. If I tried to put him to bed earlier, he would just wake up earlier. If we put him to bed later, for some reason, he would still be up at 5:30 – with a rough day ahead.

We definitely believed and followed the “sleep begets sleep” mantra. I would make sure he didn’t miss a nap or miss his bedtime by too much. If he did for some reason, I would try to schedule more sleep in as soon as possible, which was not always easy.

While we grew to be thankful for sleeping through the night and accustomed to the early rising, when Kieran was born, things became sleepless once again. Kieran didn’t sleep through the night for 12 months and struggled to fall to sleep every night. Once asleep, however, he stayed that way. Every once in awhile, we would go in to check on him in the morning (having been up with Liam since 5:30) because he was sleeping in “too much!” But it was a year or so of late nights and early mornings.

As the boys got older, I would have them read or play behind my legs as I caught short naps – me without naps is not pretty. We turned taking naps together onto Mom and Dad’s bed into some very special times for our family. Invariable, we would belly laugh and joke until we were crying. Eventually, I would have to have us calm down and even had to threaten expulsion from the bed for those who didn’t settle down.

They don’t nap much now, although as Liam has grown taller, it seems that he will sleep the second he gets into a car – he must be exhausted from all of that growing! We have found that Kieran napping means Kieran staying up late into the night, which we don’t really want on school nights.

Overall, once the boys were old enough, we turned nap time into a time to be close and bond. And I got my much needed rest as well!

Eating Issues

(Note: This is a big topic. It was a lot of what we have focused on for the past decade with Liam. I will work to bring it up again in the future. If you have any questions, please post and I will answer them or write a follow-up to this post).

Aside from not taking a bottle, at first, Liam did not exhibit issues with eating. However, when he started to eat solid food, especially after about 10 months, he started to become more picky.

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The first thing to go was bananas. Then all vegetables except peas, corn, and green beans. I can still make this kid cringe if I eat a yogurt with blueberries or strawberries too close to him.

Basically, he started to rule out all “slimy” foods: puddings, jellos, hot dogs, ice cream, fruit, and all seafood. The textures really upset him. He is freaked out by food that appears too smooth. He is also averse to food that is too bumpy: real mashed potatoes that are not whipped within an inch of their life and vegetables. Then, foods with strong tastes would turn him off – anything spicy or pungent. He only drinks the following: apple juice (some brands are out), chocolate milk (no not regular – he had a great time with the 5th grade “chocolate milk” essay from the Units of Study), and water.

We were on what some would refer to as a “white,” or bland diet. We did ask the IU to evaluate him. Unfortunately, the therapist there was not very receptive to our needs/concerns. She sarcastically shared that he was on a 3-year-old diet and that I was wasting her time. I didn’t know enough about this topic to counter her statement. We went home defeated.

Why was I making such a big deal about his eating? Forever, Liam has weighed nothing. Currently, he is about 5′ 7-1/2″ and still cannot make the air bags sense him when he is sitting in the front seat of my car. I still have to buy him pants that have an adjustable waist. He just went into the last size that has this as an option, for “men”: 20. Skinny pants do not cut it (and look horrible on him). He says that they are uncomfortable too. Faux drawstrings are my nemesis. I was once at a jeans warehouse, with tons of sizes. Unfortunately, they still don’t seem to make a 20×35 for anyone. For many years he wore shorts that we two and three sizes too small for him (if they had been pants), because they would not fall off of him. That was until his legs got too long and they started to look awkward.

Liam has low muscle tone, as many kids on the autism spectrum do. It’s why he is so skinny, although it does run in my family. It’s why he often leans or lies down in school, church, public – it’s hard to hold up all of that body. While he has grown out of this for the most part, and running cross-country helped him strengthen his legs significantly (yes, he runs 5Ks on the weekends – he’s not going to put on too many pounds too soon), low muscle tone is not something that you can exercise to improve. Physical therapy is definitely a plus, but we were not encouraged to look for a cure.

Back to eating. I needed to make sure, with his restrictive diet, that he was getting enough nutrients to survive. PBJ is still his go to lunch (with only strawberry jelly). He always packs because he can never guarantee that he will like the school lunch.

When I shared with CHOP my concerns, they got him an appointment with the eating clinic there. Again, this experience made me aware and very grateful that Liam was not struggling as other kids were. We really had nothing to complain about. At the same time, we came away with two excellent suggestions that are still helpful today.

First, give him a condiment to eat anything like a chicken nugget to cheese (if he wanted) with. His choice was ketchup, because it was his favorite color. He also liked ranch dressing.

Second, use Carnation Instant Breakfast to supplement his vitamin and calorie intake.

An additional recommendation that I picked up along the way is that Liam’s IEP and now his 504 contain an SDI that he is allowed to eat a snack whenever he wants. He literally goes to school with five snacks.

The first reason for this is that I cannot get him to eat a lot to get him through to the next meal. He eats like a bird: a little bit all day long. This keeps his energy up – because he also has low blood sugar (as does my husband). If you have ever seen this, a person cannot wait for lunch, like when you go on a long car ride and are waiting to reach the next rest stop. We can not delay meals either. Both my husband and Liam will have marked changes in their personality. Liam  will start to lose patience, control, and become very frustrated or sad.

Honestly, when someone calls to tell me Liam is really upset, the first thing I tell them is to give him something to eat. This has not changed, as I told him this yesterday. He was starting to feel that there was too much to do and that everything was so stressful (he is preparing for a competition in two weeks). As soon as he gets his snack, he sees the world “right” again, and not so catastrophically.

Much of his eating issues have subsided. While he won’t eat a hot dog or broccoli, he has enjoyed eating on a college campus during competitions. While he won’t eat lunch meat, so I have to send him with extra money to purchase an alternate lunch at events, he has come a long way. We have definitely worked to eliminate high fructose corn syrup from most of his preferred foods. So Annie’s Cheddar Bunnies over goldfish. Natural jelly and peanut butter over regular. He eats most meat and other than the threat of a rogue banana at lunch, doesn’t make too much of a fuss about what other kids are eating.

Time and maturity were definitely needed to support some of these improvements. But having someone hear our concerns without dismissing them, then offering strategies to try, also was a huge help.