If you “Lit it up blue” in March

If you “Lit it up blue” in March or have a puzzle piece magnet on your car. If you have a friend or a loved one with an autistic child, start reading about autism acceptance.

It’s awareness taken a step further. In 20 years, folks will understand autism better. But  I’m worried about the kids that are affected by too much “awareness” and not enough “acceptance”, my son, his friends, children that struggle socially but love the sensory world.

I’m not discounting the struggle. I’m not trying to make my child sound like a saint, I am trying to reclaim his childhood as his right and recognize that he’s a little person coming along and learning about the world. His way of learning about the world is very different from the way most children see things but that does not mean he is broken or sick.

We all have a value.

We are all fearfully and wonderfully made.

These are the gems:

TempleGrandin_2_605

Photo by Melanie Rieders

Autism as a facet of experience, not a limit –Harvard, March 2014

Writer Joel Rubinoff and his five-year-old son, Max.

David Bebee / Waterloo Region Record

Autism Advocates should promote acceptance, not fear

William Stillman

photo by Tim McGowan

Autism, A New Cultural Competency by William Stillman, Huffington Post

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Autism 101: The patient path to making friends

Autism 101 is a series to dispel misconceptions about Asperger’s and Autism in general. I write this post with the help of my 7 year old son, Brady. I could not express these opinions without his input or approval. This is a record of our experience. I am not an expert. I am just a parent telling my story.

“I know what Asperger’s is. It is a disease, you can die from it” — a young student at my school. This statement makes Brady laugh like crazy.

In 2007 I read, Kids with Asperger’s don’t make friends. Kids with Asperger’s aren’t interested in people. Expect your child to struggle socially because of a failure to read faces and a lack of empathy.

At 2 1/2 Brady was waiting for the birth of his younger brother Max. We collected the state quarters and put them on this map. We made one for his brother too.

We did the stuff parents do, went to doctors and therapists, googled, talked to relatives, worried. He was assessed by new people, in new places which brought out his worst. We were offered therapies that were expensive, stressful and questionable. We believed scary things. I cried. We were frightened by the idea if we didn’t do anything now we would cause permanent damage.

Age 4, we were told he needed Play Therapy and other forms of social coaching. After I heard what it was like, it sounded like he would hate it. I did not pursue it. Instead, we created Tuesday Club, our version of play therapy.  A once a week, outside playdate with my mom’s club friends. It was the critical first step in acquiring social skills.

  • We had a set time.
  • It was outside.
  • It was at our house.
  • He had a big wheel that he was confident riding.
  • We did not force him to interact or talk to anyone.
  • We had music, food and fun
  • It lasted a year

I’m glad I did not force him to attend play therapy. The happy boy I see now is a result that he made his developmental gains in secure settings. Again, I do not criticize another’s choice to pursue play therapy.  Autism is a spectrum. Only you know what works in your situation.

Back to Tuesday Club, at first it looked liked this: A bunch of kids playing in my cul de sac and Brady riding his big wheel on the outside and every now and then jumping in someone’s face and yelling. And sometimes crying. And the kids played with each other because that is what kids do if you put them outside with each other and toys, bubbles, dogs and popsicles. Brady did not really play with anyone in a way that I would call play at all.

Instead of attending a $65.00 an hour once a week play therapy, I started a Tuesday club. An open playdate in our cul de sac from 3 to 5. We did this for one year.

In my eyes, it was not working. I expected him to eventually start talking to kids. I expected him to learn names. I expected all kinds of things, ordinary things but I missed what was taking place.

I should have expected him to have fun (he did), anticipate the event with pleasure (he did), participate (he did) and enjoy being with a group of kids (he did).  The critical take away from this one year event was that he developed a positive self image. He matured securely.

I thought Tuesday Club was a lame attempt to solve the play therapy problem. Now I can see what we were

  • giving him security,
  • making a predictable event in a successful environment,
  • giving him space and surrounding him
  • with positive people allowed him to get there on his own.

I had NO IDEA he was making progress. It was very slow.

C was a pretty quiet kid who didn’t really talk to Brady. That might be why he liked him. Brady saw him all the time, he saw his house all the time but he didn’t play with him. When Brady talked about him, I affirmed he.  When C moved away, Brady still talked about him the same way. It did not make sense to me, but it was harmless. Now I think this was his way of moving into a brave, engaged direction.

The next social step  was  recognition of a potential playmate. Brady decided that C was his best friend. He talked about C daily. If we needed a friend, C was his example. In reality, he played with C a few times a year. We saw them coming and going, because they were neighbors. Brady considered those routine glimpses as “playing” without social demand.

In school he mentioned one other student- M, she was friendly and undemanding and greeted him every day. He liked her but did not do his part to keep up the friendship. To her credit, she stayed a constant social force for him in school. She was his first school friend and they are still friends now except he keeps up with her better. She overlooked the fact that he did not always answer or look at her. She was just nice. There are lots of kids like that, and they mean the world to the kids they come in contact with because they are easy and accepting.

Brady and E

Another stop closer, outside of school: E, a little girl who became a fun friend for him to visit–which was a big deal to us. She was two years younger so she was not socially overwhelming, she just loved him. She laughed at his jokes. Followed him around. I could tell that he liked her a lot because he smiled at her all the time. And because her parents are our good friends, he saw her quite a bit. He was getting used to people, she was easy to be with. The friendship was real.

Meanwhile, at school. I work in the library, after school he would go to the library, kids would drop in and he would engage with them. The library is a small setting. He felt in control there. I was nearby, he was surrounded by things he liked. The kids were sweet kids who just wanted to socialize. Because the environment was not overwhelming, he opened up. As the year passed instead of not responding to people, he started to engage. Then he got to to know the kids R, A, X, G, M, S, T. He still didn’t have play dates, recess friends, lunch friends but he was making progress.

Brady’s brother Max has done the most to connect with him. They are 2 1/2 years apart in age. They play and communicate constantly.

The patient path to friendship occurred in the spaces that felt good to him and because our life followed a predictable pattern, and within that pattern kids flowed through. As he matured, those kids meant more and more to him. He was becoming social on his own, without any direct involvement from me. I supported the environment and provided a positive narrative, but time and stability were the biggest influences here.

Towards the end of first grade he made a breakaway step, a best friend. A little boy, C, who liked him for him. They shared interests, they laughed together, they had successful playdates. It took time for me to believe it was true. I dropped him off with his friend and he spent the day. He had a great time. And that summer he transferred that skill in engaging and enjoying one person to new people. He now has a small group of boys that he plays with singly or in small groups. It looks like play to me and play to him.

He does loads of new things with his best friend, enjoys movies, bowling alleys and play dates without me. His friend gives him a willingness to try new things.

His best friend is someone he talks to and laughs with and takes turns and takes risks with. And it’s not all about his way or limited to his interest, yes there is some of that but there is also an ease and a delight in just being with his friend and spending time. And there is lots of empathy. And the fact that he has a great school community.There is no doubt my child has autism. And there is no truth to the idea that people with autism have no feelings, don’t like people and lack empathy.

We told him the truth all along. These are your friends. They want to play with you. You have so many friends. You are a great kid. So time passed, but that was the story.

This summer when we were home visiting family, Brady separated from me and ran off to play with cousins, the children of my friends all the time. I expected him to stay in the house or stay near me or play on the computer. Instead he was off playing war or laughing and talking or swimming. I saw that he was using all the skills he had acquired over the past few years. It happened without me realizing it.  While he was coming into his own, I was still reading about play, socializing, etc but I don’t think any of that reading did anything except help me break down the process so I could explain it in this blog post. I hope my story helps you. I don’t like to write personal things about my child on the internet, but there is so much misinformation on this topic out there, I hope our story helps someone.

Finally, he still does not like any large group setting. I don’t know if he ever will. I don’t think it matters as an adult.

Autism Positivity Flash Blog

This Autism Positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue.  We are (and more):  30 Days of AutismOutrunning the StormThe Third GlanceAspie KidFlappiness Is,Quirky and LaughingLife on the SpectrumFairy Tale ForgottenThe Aspie Side of Life, and Inner Aspie.

Dear “I Wish I Did Not Have Asperger’s”,

I don’t know who you are or what your story is. I heard that you went online looking for help and did not leave your name. I want you to know Asperger’s is not the End of the World.

On May 21, 2011 we prepped for the "End of Days"

My oldest boy has Asperger’s. Why was he born this way?

Mr. Dreamy is a software architect. Here he is smiling because he is not the one who is 9 months pregnant.

All signs indicated my newest addition would be a non-conformist.

My baby sister is an engineer. This photo was not taken at Christmas.

After all, I know something about not fitting in myself.

Sometimes I don't pick up on social cues.

Sometimes my son is too literal

Watering him will not make him grow faster.

And sometimes certain things are obvious

Brady knew that was just a man in a rabbit suit. His brother did not have the same clarity.

We all have things about ourselves we want to change.

People often tell me I am "unique" . I know that means "could you try to be normal?". Yes. I try. But I always end up being me.

I believe that every perceived bad thing, is tied to something beautiful. I live in the dusty desert. Without the dust, we would not have such beautiful sunsets.

My son painted this picture of the Phoenix sunsets when he was in kindergarten.

I hope you can find the beauty in the way you were made. You are important and special and irreplaceable. Don’t change, find out what you are here to do. And do it.

Your friend,
Kerry Kenney

This post is in support of the Autism Positivity Flash Blog event.