Friday, November 25, 2011

Embracing the odd, Week 1

After I posted the last blog about embracing the odd I had the idea to start doing this on a weekly basis. Since Alvin has one with Asperger's syndrome, and Elliot by all accounts is normal but has about a year speech delay I figured a once a week I'm going to openly talk about something odd that has happened with one or both kids and in Alvin's case an explanation, if any, as to why it is happening.

I start this week with an incident that happened at the gym on Wednesday night. Alvin was in his normal gymnastics class and has recently learned everyone's name. With learning everyone's name he now wants to say hi to everyone. Well there is one problem with this. He wanted to do it all class long and during every station. While it was cute at first it quickly became an obsession. At the end of the class his teacher commented that he was quite social. I of course was watching the entire class and part of me just couldn't help laugh a little at what I saw and say only my kid. The teacher is working with him to be more independent and with him obsessively saying hello to everyone that makes it a little hard for the other kids to not pay too much attention to him and make him do the work himself!

Granted in this case we know exactly why Alvin is saying hi to everyone. Since he just learned about two months ago how to express himself, now is learning how to talk at the right time. This is where being around normal kids helps a lot. Socially at times he is around a 2.5 year old. Which when you watch his social interactions makes perfect sense. In the gym he gets the social interaction with kids his age and older. The only way for him to learn the way to be socially like a typical 4 to 5 year old is for him to be around them. So why some days it might be painful to watch its necessary. He still has fun of course and seems to be catching on pretty well.

So this week while I struggled to watch the awkwardness I also have to remember something. It will get better. This will not last for too terribly long and he will move forward. Two months ago he was barely talking and expressing himself and certainly not saying hello to anyone.

So this week I embraced the social awkwardness of his actions and just try not to laugh too much. Because like we say at home, at least he is talking!

Tuesday, November 22, 2011

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.

Thursday, November 17, 2011

Down time

I love how certain posts that I do here come from conversations I’ve had with coaches, therapists, family or friends. This is another one of those posts.

A  few weeks ago I was talking to Alvin’s music therapist about how many therapy activities he does a week. At the time it was preschool in the morning (that uses ABA as the basis of the work they do with the kids), gymnastics once a week, music therapy once a week and Top Soccer (soccer for kids with physical/developmental disabilities) once a week. Then on top of this we try and work on at home some of the skills he is doing at school, music and gymnastics for about 10 minutes a week.

The next question he asked made me think. Does Alvin have down time? My immediate answer is yes but later on the way home I got to thinking about it all. He had mentioned that he and his wife had worked with kids that just never seemed to get a break and how tough it was on them.

So does Alvin get a break from it all. Yes he does in a few ways. Lately due more to Elliot’s love of art projects I’ve tried to once a week to let both kids sit at the table and paint pictures. I started giving them finger paint and paint brushes just to play and experiment with. The only rule is that everything stay on the table and that they don’t get up until they are completely done painting.

There are also evenings after Elliot goes to bed and weekend mornings. Alvin loves the Big Bang Theory and honestly by 7 or 7:30 I’m exhausted and ready to stop structured activities for the day anyway. Plus weekend mornings I let them watch a full morning of their favorite cartoons and snack on breakfast before we get up and out of the house for the day.

The thing is W and I try and use every day as a learning experience for both kids. As most of our friends here can attest to Alvin is treated like a normally developing 4 year old. We expect him to follow all the same rules as his sister and at times be a role model for her.

I think it’s important for Alvin (and Elliot too) to have the time to play together or do things with no schedule. As much as I love their activities the unstructured time is just as valuable to learn social skills and how to play together.

So do any of you have thoughts about how much is too much and the amount of down time your kids get?

Friday, November 4, 2011

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.