The gym issue, how to turn it into a positive learning experience

This week as I alluded too went pretty bad at the gym. It was show week and during the class all of the other kids got to show a skill except for Alvin. At the last station demonstration when he realized that he didn't get a turn he came to me and said "we go home now". He calmly walked out of the door went and got his shoes, socks and jacket and asked for help to get ready to leave.

I was heartbroken for him. He realized that all the other kids got to show a skill and for whatever reason he didn't. In the process of leaving I told the teacher that was out in the lobby something along the lines of you guys don't get it. He knows when he is treated differently and it does affect him.

I was fuming mad and upset for a good 2 days. Whether or not it was intentional was beside the point. I was mad because of how hard he has worked and how much he had improved and didn't get to have his turn to shine. The days following Alvin was pretty low key about the gym. If I brought it up he would tell me he wasn't going back. I blame him, not really. I decided Thursday morning that until I could address the issue he would not be going to his extra practice the next day and his next class would be questionable at best.

Friday night when my daughter had her class I got my chance to clear things up. When I got there I asked to speak to the program director after class about what happened. Instead of after class we spoke right then and there in the office. When I told her what happened she was shocked and immediately went and pulled the teacher from his class. As soon as we spoke about it I could tell he felt horrible. This is a teacher that Alvin adores. When I told him that the trust that was built was now gone the look on his face said it all. Alvin has put full trust in very few people outside of family. It takes a while for him to build trust, but once its there he will do almost anything for you.

I fully believe that what happened to Alvin in the gym was not intentional. He adores his teacher and his teacher knows how important trust is to him.

One very important thing though about this situation. There is reason to be proud of Alvin as well as an opportunity for him to learn something.

The first thing is what he was able to tell me when he was upset. He didn't have a tantrum, there was no kicking and screaming, just a calmness. He used words and his understanding of emotions to tell me he wasn't happy. These are things he has been working on for months at home, school and with his music therapist. It was simply amazing to see.

The opportunity to learn is about adults making mistakes. Granted he sees this in school because according to his teacher anytime something is wrong Alvin politely corrects them. These are the times where we talk about how everyone makes mistakes even adults. As he gets older this is going to be a recurring lesson, but one for him to remember.This week we will be talking about that on and off and addressing it directly with his teacher on Wednesday night.

In the end I am glad we were able to work everything out. What Alvin is doing as shown below in the videos shows how far he has come. The skill on the high beam he saw demonstrated only once and needed no verbal cues from the teacher to do correctly which completely floors me!

Setting up for success

A couple of weeks ago I attended the Seattle Autism/Asperger’s conference and it was amazing. First off I got to hear Temple Grandin speak which was absolutely amazing. I also got to meet her in person and get a copy of her book, “Thinking in Pictures” signed.

Another person that I got to hear speak was Jennifer McIlwee Meyers. She was so engaging as a speaker and I took away one big thing that I am about to start implementing with Alvin. That is setting him up for success. She used a few example of how her parents used baby steps to prepare her for things and by the time she needed to use them all together it was a manageable task. Once she succeeded at one thing that gave her confidence to go and begin to tackle other things one by one.


Alvin’s overall new goal is working on gaining independence. Now that we have finally begun to really unlock his verbal abilities its time to focus on needing less re-direction and working more independently. This applies to what he does in gymnastics, music therapy, the preschool classroom and especially at home. We are working on this in baby steps very hard in the gym and music therapy. Making independent choices, verbalizing what he wants and doing a skill/task when asked to or saying no thank you if he doesn’t want to. This has gone pretty well and each week we push a little more.

We have also been using this schedule to help him when we go out to do multiple errands and we have had pretty good success with him. He loves knowing what is coming up next and loves reading and moving the stickers off when we are done with something.

Alvin's schedule. This is an example of what we do on his music therapy days.

I say all of this because next week Alvin is going to do a camp at The Little Gym. Does this make me nervous? YES! But is it time that we give him a chance to work on independence, yes.

What I am going to do is attempt is help him by making up a basic schedule that shows the order of activities that will be done during camp. This isn’t going to be detailed but just a high level. I’ve talked to a program director at the gym and she has agreed to help me out with this.

The whole goal here is for the camp experience to be very positive for him and the staff working with him. I want to do what I can so his first camp experience is a success. Its 3 hours around normal kids. Some of the kids he will know and some he won’t. He will know the instructors thankfully and that should make things easier.


I'll do another update after the camp is finished but right now all we can do is try and hope for the best.

Embracing the odd

Any parent of a child with Autism/Asperger’s syndrome knows what I mean by odd. Our kids do things that boggle the mind at times. Refusing to sleep in their bed, wearing clothes backwards as much as possible, only eating certain types of foods, this list could go on and on. The point here is that we naturally seem to be able to embrace the odd things our kids do maybe a little better than other kids their age who have no underlying issues.


Let me tell you something though. I can embrace the odd things at home all day, but I have a really hard time with it when we are out in public. You know when the sudden yelling occurs. The hand flapping, jumping or otherwise out of place behaviors in the grocery store and people start to stare. Some nights in the gym I am just shocked at the odd things he does or says.

Then I read this blog posted by Angel who owns The Little Gym we first started going to before the move and it suddenly hit me. Here are a couple of  excerpts from it:

“Wonderful, hard-working parents will frequently come in to the gym and feel they need to describe some behavior their child exhibits and almost apologize for them. And what I would like ALL parents to understand is that many, many parents feel this. Even ones with “typical” children. You are not alone. And we can all laugh together at the odd behavior that our beautiful, creative children sometimes exhibit. I would like to describe now some of the wonderfully unique behaviors I’ve seen over the years. These examples come from all kinds of children. One of my favorites was a 4 or 5 year old (typical) little girl who insisted on walking, or rather traveling, everywhere in a bear –crawl for months. Still makes me laugh. (because I wasn’t her mom!) Another 4-year-old boy brought a mermaid with him to every class and insisted she sit on the ledge and watch. Some kids talk non-stop. Some insist on having a blue ball. Some make you call them a different name each week. Some will only respond if you treat them like an animal. One 5-year-old boy come to class dressed as Spiderman. His Dad shook his head and apologized. Said he couldn’t convince him not to wear the costume.”

“One 2-year-old in my class last week was as happy as I’ve ever seen a kid, smiling and laughing, until I pulled out the parachute. And then he started screaming like he was in a horror film and did not stop until I put the parachute away. At which point he began smiling and laughing like a switch had been flipped.”

 

The last part though hit home!

“I say embrace the odd. It really is the norm. Laugh and see the beauty in the uniqueness of these behaviors. Don’t feel embarrassed by them. Be proud. Shake your head and think, “only MY child would...” -Angel Hundley Gym Owner”

In all seriousness how many times have you looked at your child and think only my child would do that! I can’t tell you the number of times I have thought that or said it out loud to other parents. Seriously most of the time he does the group warm up run with his head cocked sideways. Why I’m not too sure but it looks really odd!

I sent Angel a message last week and told her how much I liked the post. Part of the email said:

“I’ve been so concerned with what other instructors, parents and kids at the gym perceive of him I lost track of what is important at the gym, to try your best and have fun. Granted we know that Alvin’s skills will most likely not be up to par with other kids his age and the social awkwardness will linger but this week I was reminded it doesn’t matter at all. Every week when he walks in he is smiling and giggling with excitement. He says hi and bye to all his teachers and now even his classmates. He runs in grabs his shakers and tries his best, and along the way makes everyone laugh at some of his skill “modifications”!

So I guess your post just hit me. I need to embrace the odd with him every week. He can stay in gymnastics as long as its fun for him. We won’t worry about how odd he looks or where his skills are in comparison to the other kids. Alvin can be himself and as long as he is still having fun then there is no real reason to pull him. Who knows he may even teach the other instructors, kids or parents something along the way!”

So with the holiday’s quickly approaching I am going to do my best to embrace the odd. I’ll laugh at all the crazy things he and his “I refuse to talk” little sister come up with at home and in the gym. I’ll do my best to ignore the stares in stores when he melts down due to sensory overload and just laugh when he suddenly says something completely off the wall and probably completely inappropriate but funny never the less!

So why it’s not always to keep your cool during times like this I think I’m going to try a little harder. Alvin is his own person. Asperger’s and all his unique/odd characteristics are just a part of who he is and I am just going to try and embrace it a little more.

Never underestimate me!

This is what I felt like when dealing with Alvin this week. I felt like when I knew what to expect from him he completely proved me wrong.

Monday night Alvin had a makeup class after missing last Wednesday. Since it was Halloween we knew there wouldn't be many kids there and I thought this would be great for him. Small class size normally means he does well.

Well as it turned out no one else showed up so Alvin ended up working with his teacher by himself. After about 10 minutes he started to panic a little and left Alex during the warmup. He told me he wanted to go home. I just reassured him that he was ok and to go back. With a little help / reassurance and a few mild tantrums during the class he made it through the full hour by himself. This is no easy task considering at times he was completely freaked out.

Later that night I finally figured something out. When Alvin is one on one with a teacher he is suddenly unsettled. He relies on other typical kids to watch and see how to act during class. When you take away the other kids he is lost. Don't get me wrong he loves his teachers and pays attention, but tends to learn from other kids as well.

Tuesday music therapy the true Alvin came out again but once again we worked through it and when we left he even yelled out the window "See you next week Teacher Jesse!"

By Wednesday I had started to doubt him a little. It occurred to me sometime between Monday and Tuesday that probably with in the next year or so Alvin's time in gymnastics would come to an end. Kids with Asperger's syndrome and autism in general tend to have poor motor skills. Team or individual sports tend to not be their strong point. So while I had always hoped Alvin would be involved in a sport like I had been the realization that he might not be just hit me.

Then Wedneday night came.  Before class I had talked to Alex about how Alvin would probably only be there another year before leaving. The worry is that at some point the skill gap will be too much and he will start to notice and want to leave. Alex ackknowledged that by the age of 7 or so kids who just want to have fun normally leave and do other things.

Class started and the 3 other little girls between the ages of 4 and 5 were there right on time and they all went in together. These girls in some ways have adopted Alvin. They know he is different but they try their best to befriend him and encourage him just like anyone else.

During the warmup something clicked with him. He was asked to do a monkey jump (start of a cartwheel) over a rope on the floor. Normally he wouldn't even attempt it but that night he did and he did it correctly! The look on Alex's face was great. He was shocked as well that he actually did it.

The rest of the class the pattern continued. He worked harder than normal for the full hour. He listened better than he ever had before and started to try and conquer new skills. After class his teacher was so happy for him. He even told me that one of the girls noticed the differnece and made the comment that Alvin was actually listening.

This is the night where Alvin once again taught me a lesson.

 I can not judge the future for him right now or any day in any shape or form.

Alvin may never be at the same level as kids his age, but does it matter? I mean this and all sports should be about having fun and I guess I lost sight of that. Alvin adores Alex and the other teachers in the gym. He adores the atmosphere and ability to be himself. He loves trying new skills and giving his teachers hi 5's and espeically saying hi and bye before and after class.

One day all the skills he is doing just may click in his head and then again they may not. The thing that Alvin taught me this week is to not worry about it. He will continue to have fun in the gym and suprise us all when we least expect it.

Bye Bye to our very special Teacher/Coach!

During this process of getting help for Alvin we have had some great therapist. In Huntsville it was his OT Mrs Denise that he saw once a week. At the gym is Mr. Matt. Both of these teachers we left and it was so hard to say goodbye. Today at the Autism Speaks walk in Seattle we saw one of Alvin's favorite teachers, Teacher Jesse. We learned that he had left the gym for reasons not important to talk about here.

Teacher Jesse was a big deal for Alvin. When we first moved here Jesse was his first teacher in Sports Skills class. He was the one that encouraged us to move him to another pure gymnastics class due to the sports skills class being too crazy to really benefit him.

Walking on the beam with Teacher Jesse and gaining confidence and trust

Listening to instructions for the group activity

When he moved classes even though Alvin wasn't in his class at the gym Jesse still asked me about him after Elliot's class. Then this summer Alvin was back in his class and all of a sudden took off. Jesse was his buddy and he would do anything for or with him. If imitation is the purest form of flattery then Alvin loved him. He would imitate the movements that Jesse did in the lobby while explaining to parents what another class did. He would follow him all over the gym and was always so happy to go see him.

Time to change stations and he is first in line and ready to go!

From a parents stand point Jesse took time and that's what made the difference. He took the time to get to know him and understand what is going on with him and how best to help him adapt to the gym environment. He had more patience with him than most anyone. He took the time to make sure Alvin made eye contact and got down on his level when needed.

To this special teacher we say thank you. Thank you for the memories and the enthusiasm. Thank you for the fist bumps, high fives and understanding. Overall, thank you for helping our son. We will not forget you!

Inspired by the word if (and a fellow ASD blogger)

Today a blog post came across my feed reader that stopped me in my tracks. The post is called "If" by Autism is a trip. While reading it I just had to take a step back. How many times had I thought the same thing.

So inspired by her post here is one of my own.

If Alvin didn't have Asperger's our life would be different.

Potty training at night wouldn't be such a nightmare.

We could all walk in public without worrying if someone was going to bolt due to anything spooking him.

We could have a normal bedtime process full of stories and cuddles rather than screaming matched and obsessive behavior.

I could play cars with him without his OCD getting the best of him.

Elliot could have more interactive play with her big brother using the kitchen set and stuffed animals.

My husband and I could go to a movie without who that Alvin knows well can come watch he and Elliot and can they come during naptime so there are less meltdowns.

I wouldn't dread going to grocery stores, malls or other public places out of fear of meltdown.

I wouldn't feel like I had to fight so hard for teachers, coaches and others to understand what is going on with him and why.


If Alvin didn't have Asperger's.

We wouldn't have moved across the country. Yes we moved for my job but the resources in the PNW are far better than down south. I also would have never met in person some amazing people that my husband is great friends with up here.

I wouldn't laugh nearly as much. Not a day goes by where he isn't dancing, singing or saying  inappropriate things that make us all laugh.

Elliot would not have such great exposure to others with disabilities. Since we stay involved with the community she always sees kids better and worse than her big brother and we feel like she is better for the exposure having not even turned 2.

I probably wouldn't have him in gymnastics. He would be playing ice hockey or soccer.

I would have never known it wasn't normal for a 2 year told to be able to count to 100!

I simply wouldn't have met some amazing teachers at The Little Gym. While they teach him gymnastics I think he teaches them the joy of watching a kid like him finally get it!

I would have never gained more compassion for him and kids like him. I have seen so many on the spectrum and I seriously am amazed by each child and each parent.

I would have never started this blog. Its given me an outlet to talk about what goes on, what we succeed at and the times that we struggle. While I do have a personal blog this one has so much more meaning.

IEP progress report and Show Week

This past week was Butter's last week of school and show week at the gym. Plus we also had Austism Speaks night with the Seattle Mariner's so to say the least it was a busy week.

I've been nervous for a few weeks about the IEP progress report. I guess I saw so many improvements that I was just hoping that he was doing the same things at school.When I first read the progress report I was suprised he wasn't doing better. Most all of the remarks he got were an emerging skill except for language which was more of a mastery. After I read and re-read the comments I was happy with it. He is making progress which is the key. If he had made no progress in the areas it would have been down right depressing. Once I had time to sit down and think about it his teachers were exactly right. So overall a very promising report and plenty to work on this summer.

Tuesday night we had the Autism Speaks night at Safeco Field with the Mariner's. To say we all had a good time is an understatement! Butters was in love! The staff was so nice and many times came up to give the kids baseball cards out of no where. The especially loved the play area. Staffed at the entrance  and inside there were plenty of extra eyes just incase he decided to bolt. Also they had a strict policy of no alcohol inside the area at all which I loved! Butters was in love with the area though and we came back a few times before the game started so he could get some energy out.

Yum, Garlic fries!

Loving the play area inside Safeco Field

Chilling out in our seats before the game

Fist bump with the Moose! I was so shocked that he even wanted to get close to him!!!

Of course we had to have a hotdog at the game.

Wednesday night was the big Show Week at the Gym. To say the least I was really nervous about this but it turns out it went much better than I had imagined. Below are his routines on the bar and balance beam. I tried to get his tumbling routine on the floor but after people started clapping half way through he got freaked out and bolted away so I had to run after and retrieve him to finish the routine.

Beam routine!!

Bar routine!

So the next topic I'm planning on tackling is helicopter parenting. Does having a diagnosis make you more aware and protective of what they do and when or have you adapted to it just not phasing you anymore?

How we got here

Meet Butters and Peanut

About 6 months ago everything we thought we knew about Butters was turned upside down. We always figured he was a little different in some way but nothing much. Sure he had an unusual obsession with numbers. By the time he was 2 he could count to 100. By the time he hit 3 he was taking bath tub foam numbers and arranging them in 6 digit combination and could tell you what they were with no problem. We just thought that he loved numbers and wanted to let him explore what he was interested in at the time.

At Peanut's first birthday party someone mentioned that we might get him evaluated by a speech therapist. So we agreed to and made an appointment with the one in our peditrican's office. The test showed results much worse than we thought. His speech was on the level of about an 18 month old. She also said the word we never thought we would hear. Autism. She thought he had a form of autism but wouldn't elaborate any further.

From here we met with an occupational therapist (OT). The OT was wonderful and the news she gave us was similar. She stopped in the middle of the evaluation and said how intelligent he was and how she thought he had Asperger's Syndrome just due to his high IQ and motor skills that were pretty low. When she met him he was also rated as age adjusted as an 18 month old. She also observed that he was having drop seizures. We thought he was just clumsy but turns out we were very wrong.

Talk about a kick in the gut. Yeah we went from thinking that he was just a little speech delayed to haveing autsim and seizures.

Then there was the psych evaluation. She actually said that our lifestyle caused all of this and he just had ADHD. Do I even need to say how crazy we thought this woman was?! Lets just say we never saw her again.

After the seizure mess Butters had a 1 hour and 24 hour EEG done. Both showed nothing much and after discussing things with his peditrican it was decided to do nothing and his doctor thought he would grow out of it in a few years anyway.

After he was medically cleared he started classes at The Little Gym. This was a different kind of therapy for him. While we were still working on fine motor skills with his OT, the gym provided a place to work on gross motor and social skills. It also provided a great place to learn from other kids. After just over a month he was following directions most of the time and even listening to the teachers.

Then we got the offical word we were moving. We still met with the local school system and tried to get him in, but after the inital evaluation we were going to have to travel 20 minutes one way to take him to school. The whole system just frustrated me and we never even did his IEP.

Now that we are settled in WA things are getting better. He still goes to The Little Gym and loves it. All we look for now is slight progress every week. We celebrate increases in language and interaction with other kids and even his sister!