Don’t feel sorry for me

A couple of weekends ago I was working 1st shift on an airplane in the factory and I got to talking to one of the shop guys about the upcoming holiday, kids and such. When I mentioned that my choices this year were based on how best to help Alvin and mentioned that he had a form of autism he got very quiet and said, “I’m so sorry. That has to be so hard on you and your family.”

While his reaction is normal and I understand that part, I think my response caught him off guard.

I immediately said “I’m not. Alvin is very unique and autism or not he is still a 4 year old boy and at times just has more quirks than other kids his age. Even if we didn’t have the diagnosis I would (and do) treat him like a normal 4 year old.

I guess after a year of dealing with this I’m starting to learn to not let autism/asperger’s syndrome define my son. The diagnosis was a huge help to understanding him, but it doesn’t define him or his future. W and I have a running joke that our goal like any other parent is to raise him to the point that he can be self sufficient and leave our house!

Lately I’ve made it a point to reshape my view on autism.

Autism is not an excuse but a reason behind why Alvin acts the way he does. 

I’m not willing to just accept things as they are and shelter him from the world. I’m not willing to take the easy road. Lately we have been pushing him very slowly but surely. Every week there is a new challenge; be it at the gym, music therapy or just normal social interactions. We have begun to push his limits and its working. Verbal skills have increased and he is becoming quite the little professor. He has great manners and says hi and bye to everyone we meet. It sounds awkward as anything, but that doesn’t matter. The point is he is talking and interacting in his own way. He has now done 2 camps at The Little Gym and while the separation was hard at the first one it got better with the second, the rest of both of the 3 hour camps were deemed a success.

I guess what I am getting at here is that most days the fact that he has this mess fails to make any difference in what we do. I don’t feel sorry for us and don’t expect anyone else to. Sure I would love more understanding but who wouldn’t. I guess through all the craziness it can be I’ve adopted W (my husband’s) outlook on it. Autism can be pretty awesome if you just take the time to get to know the person!

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 week 2

This week’s odd moment most any parent can relate to. For parents of kids with Asperger’s Syndrome this scene might really hit home and hopefully make you laugh far too much.

Let me preface this by first off saying Alvin has an obsession with toy cars. He loves to line them up by number. This can be ascending or descending order. The numbers can be arranged by even or odd as well. It can be by make or model, color, you name it. They can be racing or head to head crashing all in a line. He’s been doing this since he was about 2.5 and to this day cars with numbers on them are a big thing.

On Wednesday nights before gymnastics I generally take Alvin out to walk around stores, get dinner and otherwise spend one on one time with him. This week because I have rocks for brains I took him to Toys R Us looking for a specific Melissa and Doug toy band set. Well the general rule in a place that carries Hot Wheels cars is if he behaves himself he can get one. Well he had been pretty good. No major melt downs and didn’t run off so we went over to the large Hot Wheels cars display and he was allowed to pick one out. He grabs this one and I just cringe!

The next thing he does it say loudly “69!” I try and give him another number car but it doesn’t work. His mind is made up on that car. All I can do is shake my head and continue on. We pay for the car with no major incident and once back in my car he is very happy to have the number 69. We head over to Jack in the Box for dinner since he loves their rice bowls and so do I. Once entering he starts yelling 69 over and over. He doesn’t want to be in there so all he can do is yell a number. I get our food we sit down and all I can do is laugh. Then I text my husband and some friends and the laughter continues.

Now granted I know that what happened here is common. A kid has a very strong interest in something and doesn’t want to let it go. The main difference is most 4 year olds have better verbal skills that Alvin.

On the plus side though for once I was able to laugh at the situation instead of being embarrassed and think only Alvin would be proclaiming his love for the number 69 in the middle of a store!!

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!

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.

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?

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.