Ten Things Every Child With Autism Wishes You Knew: Part 6– I am Visual

This is the sixth  part of of my series from the book I recently read. It’s Ten Things Every Child With Autism Wishes You Knew  by  Ellen Notbohm. The following is from the article by the same name:

Because language is so difficult for me, I am very visually oriented.  Please show me how to do something rather than just telling me.  And please be prepared to show me many times.  Lots of consistent repetition helps me learn.

 A visual schedule is extremely helpful as I move through my day.  Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.  Here’s a great website for learning more about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm. We figured out the visual learner several years ago when we stumbled upon the Rock and Learn series– Letters & Letter Sounds and Phonics were our first two. J spent hours watching how the mouth on the video formed the sound and– he learned how to make the sounds! It was the first step toward talking… We did have some disagreement with J’s speech therapist who didn’t think TV was good for him– but, we’re the parents and she didn’t live with us so we won! (She was wonderful and we’d still be with her if we hadn’t moved.)

TV, in my opinion is a tremendous tool for communication and learning.  We’ve always been pretty careful about what he watches– fortunately he isn’t interested in stuff that wouldn’t be good for him.  On the few occasions when we saw behavior changes in him like when he was watching Samurai Jack– we removed it from his repertoire and order was restored.  Also, J turns on the subtitles and reads along with with the movie. I realize that some of it is memorizing but he has learned a lot of “bigger” words as a result of context within a movie’s scene. Anyway– do with this as you will but it is our belief that TV (more specifically movies) have been good for our J.

We just brought back visual schedules. I’m no artist– and J reads well so, I make a to-do list rather than a picture schedule for after school until bedtime.  I attach a sheet of stickers to it so he can mark each item as complete and, if all things are done, he gets two stickers on his chore list (good for a prize on Saturday morning if he has all his stickers and/or bonus stickers. It works really well for J.

We’ve also found that at the early on set of a meltdown– when he isn’t listening anymore and is becoming more and more frustrated we can dissipate the situation with a written not explaining in very simple terms what we are trying to tell him.

Please share some of your tricks– what works for you as far as visual communication? I’d also welcome you to leave comments on the other sections of this series to share what your experience has been and what has worked for you.

Diagnosis: Autism

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.