Wednesday, September 28, 2011

A new therapy

We have done all kinds of  therapy with Alvin over the past year. We have done the traditional route of occupational and speech therapy. We are doing ABA at school and social skills work at the gym and now we are doing something completely different.

We have been told by a few therapist that have worked with him that he would be a perfect candidate for music therapy. He used to love directing the pep band at hockey games.
We knew he loved music but weren't too sure how to go about getting music therapy started. The program in Huntsville had a long wait list to get in.

So what do I know about music therapy? Well lets see.....

Ok, so I don't know much at all about music therapy yet. I know that I have heard it can help kids like Alvin with speech, fine motor skills and cognitive development. What is he exactly going to do, not entirely sure yet. I know that he will be working with 2 instruments to start being the drums and the ukulele.

The best part of this for him is he will have a teacher that he knows. He will be back with "Teacher Jesse"! Alvin has been asking for him the past few weeks and they will be re-united for once a week session in his home as part of Harmony Music Studio. I'm not sure who is happier about this us or him! We have talked via email and phone and have a game plan. After a couple of weeks of getting used to the routine the thought is to make some goals. Something that in a 4 or 6 week time we can see what he has accomplished and what things need more work.

So once again I am going into the unknown with something else to help Alvin. I will of course be documenting things here and shorter burst on the facebook page and twitter. We may not know a ton about what we are about to embark on but I do know one thing. I know that Alvin will never be made to feel like he is doing something wrong. It is all about having fun and helping him get better at the skills he needs work on.

Saturday, September 24, 2011

A rough week at the gym

So this week Alvin had a makeup class for missing his gymnastics class the week before and the next night he had his regular gymnastics class. After missing a week I wasn't too sure what was going to happen with dance class and gymnastics on back to back nights but I figured we would just go with it.

Dance class went fine. He participated in all the moves but declined to wear the tap shoes. No major issue though. He still had fun and that's all that matters in the end.

The next night didn't go as well though. It was his normal class for the new season and he knows the instructor so I figured he would pick up right where he left off with Jesse from the summer. Well I was wrong. He did good for about the first 30 minutes then just completely spaced. He was wondering more and more and loosing focus in stations. I finally went back in to re-direct him back to his station and help him do a skill. One of the little girls (who has never had a class with him until now) told me that he was a bad kid and wouldn't stay with the group. I had noticed that 3 of the girls kept their distance from him during the first part of the class but didn't make much of it until then. At the end of the class one of the instructors came in during their closing circle and had a quick talk with all of them about how we are all different and they only needed to worry about themselves.

The comment had me in shock and almost to tears. It finally hit me that this is the way the other kids see him. They see him as aloof and a bad kid.

The parents were giving me odd looks too. Most of them (except for one) has no idea what is going on with him. I'm trying to figure out if I need to say something next week or not to inform the parents of why he acts the way he does. I'll probably just play it by ear and see how things go.

After I helped him back with the group I walked out to the lobby and the other instructor immediately recognized something was wrong. I told her about what I had noticed and proceeded to just avoid the other parents and get our stuff ready for a quick exit. When class was over I just wanted to get him dressed and run away. I helped him get his shoes and socks on and got him out. I was on the verge of tears and all I could tell his teacher is that we would work on his skills this week and figure out what to do next week.

The horrible feeling I had was made worse the next day when discussing this with a co-worker who thought it was good for him to get bullied. He said that helicopter parents just make it worse. Seriously! You have 2 normal kids. How in the world do you know if what I am doing is making it worse or better?

After 2 days of cooling off I was able to let Alex know that I needed to talk to him during Elliot's class. I asked him what he would suggest doing at the next class. He agreed with the plan of me sitting on the wall during the entire class and re-directing him back to the group every time he leaves. The thing is he has been in the gym long enough to know what is expected of him. Now after having months to learn the system he is going to have the same standards of behavior that the other kids have. He will be expected to stay with the group at all times. Granted at this point he will not be doing skills at the same level, but socially we want him to follow the same rules.

I know that this won't solve all the problems. He still has issues with the skills. Ok he has major issues with the skills. He has a really hard time putting things together in sequence. Like putting his hands down and jumping up with his legs to try and do a donkey kick or monkey jump.

There is a huge part of me that wants to pull him out of the gym. I have the worst time seeing him fall farther and farther behind in skills from the other kids. II hate seeing him struggle so much and just barely get it. He tries so hard and I have to wonder when its going to hit him. When is he going to realize how different he is with his social skills? When is he going to realize that his skills are well below the other kids in gymnastics?

For right now we are just going to stay the course. I'm going to work with him the best I can the next few weeks at home with the basic skills he does in the gym and I'll stay in class at the gym and see if it helps. Overall I'll continue to work on the dozens of things we do everyday in hopes that things get better through preschool (and working on his handwriting as homework), soccer, gym and soon music therapy.

I'll try and remember to update next week as to how things go and if the new strategy at the gym is working.

Thursday, September 22, 2011

Success of a different kind

A long time ago my husband W and I met working at the US Space and Rocket Center. When we were dating we had the same job, Space Camp/Aviation Challenge Counselors. We had kids all week every week during the summer. We saw all types of kids. The ones that thier parents had all the money and were just there to play, the kids who confided in us because their home life was bad and they were there because thier parents didn't want them at home. We saw kids in every kind of situation you could imagine. We did our best to have fun with them but when you are working team doubles (6am until 11pm) 5 days a week it drains you.

But then for 2 weeks in the summer you are in love with your job again. There are the two weeks that the visually impared and hearing impared students come through camp. These kids don't get a free ride. They have to work so hard in school to even qualify and then they get the chance to come. Teaching these kids at times was a challenge. Helping a visually impared kid see a monitor required some resourceful thinking and sometimes braille. As W can attest to taking them diving in the underwater astronaut trainer is even more fun! The hearing impared kids they were fun too. They were so much fun in thier own way too.

One thing working with those kids taught me was how rewarding it can be to work with special needs kids. Granted many of these kids didn't have developmental issues but they still had tons of challenges to overcome just to get there. Once they were there they worked hard and played even harder. In some small way I started to understand and appreciate what they did and how hard they worked.

Lately I have been thinking a lot about those kids. One night W and I were talking and I compared watching Alvin succeed at something to those kids. When any child overcomes a challenge you are proud of the accomplishment. When you see a nero-typical child get things so easy it can really kill you inside. When I watch Alvin at the gym its heart breaking some nights. I see how hard he is trying. I see him making an effort. Then I see him fail at times. I see the look in his eyes when the colors and sounds get too much and he just spaces out. There are so many of these moments and I do my best to hold it together around the other parents.

Then there are the nights where it clicks. The nights where his attention span is better and he stays with the group. The nights where he tries something new with less hesitation. The times when he does a skill that the other kids may have gotten months ago inside I cheer. I see his teachers light up because they know he has worked so hard.

I appreciate Alvin and what he does like I appreciated the visually and hearing impaired kids. I know that in so many ways he is going to have to work twice as hard as most kids. I know its going to be rough road but I know it will be worth it!

Wednesday, September 21, 2011

ASD therapy, are we doing enough?

Are we doing enough for him? This is a question that really bugs me some days. Right now he is developmental preschool with 12 kids a lead teacher and 2 para-educators that stay with the class. He’s getting social integration, fine motor skills practice and speech therapy 5 days a week for 2.5 hours a day. Then there is Top Soccer. A soccer program for kids with developmental/physical disabilities. He has that once a week though the end of October. Then there is The Little gym. Here they focus on preschool skills like listening, imaginative play, and staying focused. They also work on gross motor skills using gymnastics equipment and games. The gym is the only place he gets to really practice social skills he’s learned with other neurotypical kids.

With all of this I wonder if it’s enough or is it too much. This thought always seems to creep back into my mind every so often. Now we are thinking about adding a music therapy class to the mix with the teacher I referred to in the previous post.

With everything that we do is it too much or not enough. I wonder if he has enough down time with it all. Time where he isn’t in a therapy setting. I do my best at home to let him just be a little boy and do his (at times) odd things. I try to get both kids to a playground at least once a week in addition to all of the other things. Plus most Saturday mornings are spent not doing too much but snacking on breakfast and watching cartoons while playing trains, blocks or whatever. I also worry about Elliot. I make sure I get one on one time with her every week but is it enough?

So here is my question for other parents of ASD and other special needs kids out there. How do you know when you are doing not enough or too much?

Saturday, September 17, 2011

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!

Sunday, September 11, 2011

Please join our fight!

I normally don't post things like this but today I'm making an exception. This next weekend we are participating in the Walk for Autism Speaks at the Seattle Center. Here is our story and why we walk. If you would like to donate to our team there is a link to the life with butters team page at the bottom.

Did you know that every 15 minutes another child is diagnosed with autism? This has occurred in my family.

When Alvin was diagnosed we were floored. How could he be autistic when he talked, was social in his own way and generally a happy kid. That didn't fit autism sterotype that we knew of so we didn't understand. Soon after the start of the diagnosis we found out exactly what it was. Alvin has Asperger's Syndrome a form of autsim. His lack of coordination- related to Asperger's Syndrome. His exceptional skill with numbers- another trait of Asperger's Syndrome. And the list continued to grow. Now we better understand our son and others like him. We fight daily to help him reach his full potential in all aspects of his life.

I am walking in the fight against autism at Walk Now for Autism Speaks, joining tens of thousands of other people united by a single cause and dedicated to raising money to find a cure and build awareness for autism. The money raised at Walk Now for Autism supports Autism Speaks mission to finding the causes, effective treatments and a cure for autism through funding essential biomedical research. One in every 110 children and 1 in 70 boys are diagnosed with autism. Autism Speaks directs 75¢ out of every dollar raised to autism research, awareness and outreach.

Please consider  helping kids like Alvin by joining or donating to our team! LifewithButters walks for Autism Speaks!