Diagnosis: Autism

22 01 2008

J was two when we had the annual family reunion at our home. Cousins were everywhere. The “Men-Folk” built a play fort. There was noise, commotion, food everywhere and, the inevitable conflict.  It was a typical family reunion.

 It was crazy busy for my mom and I who were the primary cooks, cleaners and peace-makers. My husband and I shared duty with everyone else in J’s care for the long weekend. He was content. He was dry. He was fed. We didn’t notice that he wasn’t really playing with the other kids. We didn’t notice that he wasn’t really interacting with the adults. But, they noticed.

A couple of weeks after the family left and the house was back to it’s normal state of disarray my brother called. He hemmed and hawed a little and finally said “there’s something wrong with J and you need to get it checked out.”  Talk about a lightning bolt! I was furious– how dare he say there was something wrong with my perfect child?!

He was– and will always be– an only child. He was physically perfect.  A little short but, there’s nothing wrong with that! He was growing just fine. All his fingers and toes were there. He was healthy. He was happy. I was furious with my brother for suggesting there was something wrong!

A few days went by and my brother called again– he apologized for making me mad but, he wasn’t alone in his assessment– the “whole family” thinks something is off.  J didn’t play with the other kids, didn’t respond to direct communication, didn’t look people in the eye, didn’t talk. “You need to have him checked out.”

I called around and found someone from the health department to come to our home and make an assessment– just to prove my brother wrong. The assessment indicated the need for further assessment… what did that mean? He did well– organized the blocks, read, basically– I thought– he was WAY ahead of most kids his age! Who reads at two?! The child was a genius as far as I could tell!

We took him for further assessment and he had eight of ten markers for Autism Spectrum Disorder. Autism? But he didn’t sit in a corner rocking back and forth! There must be a mistake! It was devastating… I cried all the way home… and then I got mad. How dare these people who didn’t know him, who saw him out of his comfort zone, who couldn’t have seen his genius make such a diagnosis?! How dare they?!

My husband was angry. He blamed God. He blamed genetics. He searched for causes and for someone to blame… it was a really rough patch in our marriage while we were working as hard as we could to “cure” J from this injustice that had befallen him– and, us…

J was immediately enrolled in early intervention. He started speech therapy twice a week and group socialization once a week. We worked with him– A LOT!

About a month into speech therapy I made stopped by to talk between her appointments. I sat on the floor of her office and cried. I begged her to tell me that the diagnosis was wrong. I pleaded for her to tell me that he would outgrow it and be ok… she couldn’t. She didn’t lie to me and in hind sight I’m glad she didn’t but it was a horrible time. We greived for who he would have been without Autism.

The stages of grief are real. They come in many forms and people deal with them differently. Mine were a fog. I was manic to fix everything– I read everything I could find, talked to everyone I could and cried whenever I wasn’t working on a “cure”.

Well, I still haven’t found a cure. I’ve found treatments– some have worked well, some have been a failure. J has made tremendous progress and is able to communicate pretty well although he does “borrow a lot of words” from his favorite movies (echolalia). His eye contact has improved tremendously and he loves his cousin S– who according to him is “My best friend”. (Unfortunately, S lives 3 states away so they don’t get to see eachother very often.) He also loves my brother. And so do I.

J is doing really well and I’m hopeful that he will be able to become a happy, independent adult. We still have a lot of work to do and the sacrifices we make are worth it when we see his progress.

If I can leave you with any words of wisdom– if you see something off you must find a way to tell the child’s parents.  Expect them to be angry or hurt but do it. The earlier a child is diagnosed the better it is for progress to be made. Early intervention is crucial. Remember that Autism is a spectrum– every child is different whether they have Autism or not. There are no cookie cutter treatments that work for everyone.

Some of the things that worked for J are “Rock and Learn” videos (available at Amazon.com) — they’re repetitive and will drive you nuts but, they were very helpful for J to learn to talk. (Phonics, Letter Sounds and now he’s doing math and telling time). J is hypo-sensitive and deep pressure is very calming for him– when he was a little younger he told us to “Squeeze” his head– and, he wasn’t talking about a hug– this was a serious smooshing.  Now, he wants to wrestle. We did brushing, blanket rolls, weighted vests and trampolines. They have all helped him. We used to do picture schedules and now just write it out. Different things work for different people.

For signs to watch for visit either Autism Speaks http://www.autismspeaks.org/whatisit/learnsigns.php or the Autism Society of America http://www.autism-society.org/site/PageServer?pagename=about_whatis_characteristics .

So far there is no cure for Autism. There are treatments and great progress can be made.  Many people with Autism live happy independent lives– look up Temple Grandin as a great example;  She has written several books, has a fulfilling career and is able to live independently. Look on YouTube for her seminar.

Become educated. Become opinionated. Become involved.

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Ten Things Every Child With Autism Wishes You Knew; Part 3: Can’t or Won’t

16 01 2008

This is the third part of of my series from the book I just finished reading. It’s Ten Things Every Child With Autism Wishes You Knewby  Ellen Notbohm. The following is from the article by the same name:

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Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).  

It isn’t that I don’t listen to instructions.  It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy.  #$%^*&^%$&*………” Instead, come speak directly to me in plain words:  “Please put your book in your desk, Billy.  It’s time to go to lunch.”  This tells me what you want me to do and what is going to happen next.  Now it is much easier for me to comply.

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How easy it is to forget that our children hear differently than we do! It’s work to communicate with them– but, it’s much more work for them to listen/communicate with us… And, the payoff is worth the walk across the room, the insistence on eye contact, the demand for a response.

Last night J was “off.” He wasn’t in tantrum mode but was extremely disconnected. He laid around, he didn’t want to eat, he didn’t connect with me when I spoke to him. His usual happy, singing, funny self was tired. But, when I tucked him in, took his face in my hands and told him that I love him– he told me that he loves me too.  That’s the pay off. That’s what makes all the work worth the hardship.

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My heart breaks for parents who’s children have never said those words. J was five before he said them… and I still remember like it was today. Don’t give up… Don’t ever give up! Remember– it isn’t that your child won’t– they can’t.