Monday, December 10, 2012

WHAT AUTISM MEANS TO ME


I think a little background is in order before we get started on my actual blog post. From the day she was born, we knew The Freshman was different from other children.  She would freak out if liquid touched anywhere but in her mouth, she would wake up screaming for no reason and she had little ‘obsessions’ that she would not give up.  We would have to sit there for hours dangling our feet in the air so she could sit in her carrier and watch them.  As she got older we noticed things like not wanting to associate with other kids, extreme tantrums and trouble with social situations. I remember having to take her outside away from all stimuli to try to calm her down. We thought nothing of the speech problem (speech impediment not language delay) that both the older kids had because it ran in my family. However, the Senior grew out of hers once she started school and was around others a lot more.  The Freshman wasn’t growing out of hers.

When we moved to a new town when she was 5 they said she was just socially lacking and put her in counseling, social groups and speech therapy.  Yes, we saw improvements along the way, but there was still just something off.  For years the word autism kept sneaking into my brain but I always dismissed it because she was talking, had good grades, had taught herself to read and wasn’t anything like the few other autistic kids I’d met in the past.

Then one day when she was nine years old, after many years of struggles with her, and on her behalf, she was reading an article on the internet and told me the boy in the article was just like her.  I read the article too and this boy had something I had never heard of, It was called High Functioning Autism.  I was shocked.  Why had I never heard of it.  Finally there was one simple word to describe my daughter.

Nine years after I first noticed a problem, when no one else really did, I took my daughter to her pediatrician. She thought it was worth exploring and sent us to a therapist at the local psychology center.  He agreed that we were onto something, but it turned out that we were moving to a new town.  And in this new town we found the only Developmental Pediatrician in the state.  We made an appointment and after months of visits and observations we had our diagnosis.  My daughter was on the Autism Spectrum. She had Asperger’s Syndrome.  We had a diagnosis and were finally in a place to help make her life easier. She has made tremendous progress in the last four years.  Meltdowns are at a bare minimum, she has many friends and she is working hard on hygiene and organization.

So now, I want to tell you what Autism means to me. For many, it means mega meltdowns, public embarrassments, daily struggles, heartache, altered lifestyles, and daily frustrations. To me Autism indicates these things, but means much more positive things. It means I have a child to love and take care of like any other, the methods are just different.

Instead of calling an Autistic Tantrum a meltdown I like to call it a unique release. My child, although she is very verbal, still has trouble expressing herself in many ways.  If not for these meltdowns life would probably be completely unbearable for her. (She has learned many coping mechanisms over the years) Her occasional meltdowns are now known as unique releases.

Public embarrassment was so real at first, especially before we knew why the behaviors were happening. But I have started to use these experiences as teaching opportunities. I am now a teacher of the truths of Autism.  I have had people look at me like ‘why don’t you just discipline your brat and maybe they wills top behaving that way’, or they make comments about the ‘spoiled brat’ I now shoot back “You want to try?  You look like you are an expert in Autistic Meltdowns!” I either get an embarrassed look or sometimes even an apology. And every time, they proceed to watch in fascination as I apply the coping mechanisms we use to try to diffuse the situation. Some even ask questions that I am more than happy to answer. They usually leaves having learned something. We no longer have embarrassment we have teaching and learning.

Daily struggles quickly morphed into being called Rewarding Hard Work. In the beginning the struggles to get the Freshman to take a bath, brush her teeth, change clothes and go into social situations were almost overwhelming but I soon began to realize how good I felt when we succeeded at even one thing. The success was rewarding and on days we failed at everything I still felt rewarded that we had tried our hardest and done our best for the day. And we would get our chance for success and reward again the next day.  We had survived and could still rejoice in the love of our child.

Heartache is still a part of our daily lives. How could it not be when you watch your child struggle in some way every single day. But with each heartache you build strength to endure it again and again and it makes every success that much sweeter. I like to call it soul strengthening instead of heartache.

After the diagnosis, many things in our lifestyle had to change. I went from spending my days at home to running here and there for counseling, PT, OT and other appointments. Instead of thinking of it as not getting to stay home and relax I started to think of it as getting to socialize and know our new town. It was good for us to get out and about!

We also had to start adhering to more of a routine after the diagnosis and instead of being a hardship it helped us get more done and it helped the kids learn important lessons about merging responsibilities and fun. So instead of becoming a dreaded lifestyle change it became a better way to live. (Although I admit we slipped a lot during and after my 5th pregnancy because I was so sick and my hip problems kicked into high gear, we are getting back into the swing of things.)

Many people assume that life is a daily frustration for us. But I think of it as a day full of joys and accomplishments.  The surprise hug or kiss from the kid who hates to be touched is amazing! The time when you are sure a unique release is imminent and it doesn’t happen. Like tonight when we made something for diner that The Freshman did not like, we were sure the *&$# would hit the fan but it didn’t.  She got upset and refused to eat, but was relatively calm and put her energies into working on chores.  There was no screaming, crying, stomping, rocking or hiding. And that was joyous! She eventually ate which was another step in a positive direction!

How about when the child who wouldn’t walk to the curb to throw the trash in the can walks to the corner store with a new friend from the neighborhood. That is a joy, a very happy day indeed. So instead of having daily frustrations we have daily joys.

Everyday my ASD child adds joy to my life in one way or another and for that I am forever grateful.  Autism means what you want it to.  Positive or negative, it's your choice.

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