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!

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?

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!

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!

Wordless Wednesday- What Butters thinks Volume 2

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.

What's wrong with him?

This evening before gymnastics Alvin was having one of his moments. He couldn't transition to gym from dinner and was mad at me for not letting him take his lemonade inside. After a few moments of meltdown he was able to calm down (with the lemonade I grabbed from the car). After Alvin was back to being his happy self bouncing off the walls and saying hi to his teacher one of the little girls from his class came right up to me and asked "what's wrong with him?"

The little girl was around 5 years old and the question was innocent. I was shocked by the question and honestly had no idea what to say. All I could say was he was just acting silly at the moment. I wanted to tell her more, but then again I dind't want him to be looked at any differently but wasn't sure how in the world to tell her part of what was going on with him.

So my question to people who have been at this longer than I. How do you explain it? Do you just brush it off or are you honest? How do you handle the question? Any advice would really be appreciated!