Where Ladybugs Roar

Confessions and Passions of a Compulsive Writer

Friday, April 1, 2011

Autism and its Impact

April is Autism Awareness month. I know that there are many "months" out there... some silly and some serious, but I hope that some of you will take this to heart. Unlike other causes, this isn't just about research... this is about a misunderstood epidemic.

Yes, it's an epidemic. Autism is an epidemic.

One in one hundred and ten children will retreat into the quiet of their minds. The number is greater among boys. It's as if you've lost your child. If our children were dying in this number... you would know the symptoms and the world would be reeling. To a parent, having a child with Autism can feel that devastating.

If your child has Asperger's (which is currently on the Autism Spectrum) you may see unexpected rages in an otherwise happy child. They may come across as angry or unaware of social awkwardness. Their violent outbursts can make you feel like an awful parent.

Autism can make you feel like an awful parent. You can't imagine the guilt... you simply can't.

Autism can destroy marriages. Since B was diagnosed eight years ago, I've seen so many marriages fail among those I've met. Overall, eighty percent of marriages where a child has Special Needs... end in divorce. Until you're looking at bills for therapy that you can't pay.... Until you have to go without therapy because you just can't afford it and no one else steps up to pay for it.... Until you're thinking "what did I do wrong... was it something I took while I was pregnant... was I not there enough... did I not do enough?" every day for years... you can't imagine the stress on an individual which transfers to a marriage.

My husband and I are very lucky... both because we've made it through so much and remained married and because our kids are both high-functioning... now. This wasn't always the case.

Once upon a time in May of 2003, we sat in a room and listened to a doctor tell us that B had Autism. It was our diagnosis day. Even though we'd expected it for months... you can never prepare for such things. B was completely nonverbal at 2 years old. She never responded to her name. She never pointed. She had burn marks on her leg from where she'd burnt her leg on the baseboard heater and never made a sound. We asked questions: "Will she ever hold down a job? Will she ever leave our house? Will she ever get married?" His responses were overwhelmingly pessimistic.

In effect, we were told not to dream because we'd just be disappointed. It was like being told: You've just entered the world of Autism. Please check all your hopes and dreams at the door because you won't need them here.

The doctor also looked at T on that day and said: "No, there is no way this child has Autism. Look how social he is." Three years later, he'd be saying, "Your son has Asperger's. If you'd like a formal diagnosis, you can get it, but it won't do you any good; school districts don't recognize it as something that will benefit from therapy."

Ours isn't a sad story, though. We dove into therapy and intervention. If we could find a basis of science behind anything... we tried it. We saw specialists and did diets and vitamins after approving them through a wonderful pediatrician. We got a second mortgage on our house in order to pay for private therapy when our insurance would only provide so much... and the school district/government programs gave minimal support. I drove my kids from place to place for intervention... constantly. Our lives became a great battle. While I won't say we won... my children are both main-streamed completely and none of their peers know they have Autism.

Little by little, I've begun picking up the hopes and dreams I left by the door when I entered the world of Autism. I won't say this is happily ever after... both my kids still have Autism. T still has unexpected rages. B still doesn't understand social behavior. I'm crying while I write this and if they were here... they wouldn't recognize or understand why.

Autism is a life sentence. At this point, my kids will have it their entire lives.

There is no cure for Autism.

I've been lucky. I've been blessed. We had B diagnosed the day before she turned two years old. Most parents are not that lucky. Most parents struggle to get that all-important diagnosis. The average age for diagnosis is around three years old. It's much later for Asperger's. When you have a child with a developmental disorder... your clock is ticking. Every day you can't reach them is a valuable day lost. The early years will determine whether you can save your child... or whether they're lost to this other world.

If you raise awareness this month in no other way then in learning the symptoms yourself, you've done more than enough. As an Autistic child's parent, I want the world to understand... and I want to save more parents from the heartache of losing a child to Autism.

Hug a parent of a child with Autism. Some days... suck. I have a mental calendar of the worst days, but there are other days that I just hope will fade away and be gone without being marked.

Hug an Autistic child--if they'll let you. They might not. They might not want to be touched. This is the reality of Autism.

Change your porch light blue for the month of April (blue lights can be purchased at Home Depot.) My sister told me that they have a blue light because her husband is a policeman. I found it interesting that Autism and an emergency service are linked in that way. Autism is an emergency.

Learn the symptoms: http://www.autismspeaks.org/ Without early intervention, my children would have been lost forever to their own worlds. I can't even begin to tell you how vital early diagnosis and intervention are. By seven years old, the neural pathways are in place and therapy becomes drastically less effective. The clock is ticking. If you have a child with Autism, you can nearly hear the ticking every day. Every day. It's there in the back of your mind... tick tock tick tock Have I done enough today? tick tock tick tock.

Save the next generation of Autistic children who are being born right now. Most researchers suspect that the number one in one hundred and ten is being optimistic. Some suspect it's closer to one in seventy or even more severe. With early intervention, many of these children can be helped immeasurably. Your money, time, emotions are worth saving these children. Their lives and happiness are beyond price. They need us today. They need us right now.

It's an epidemic. Hug, love, save a child with Autism. I've done that with two... it's your turn.

7 comments:

  1. My son has Aspergers and yes you are right ... it can really test you in so many ways. Good luck.

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  2. Dangit, Wendy, you've made me cry. *hugs*

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  3. Thanks for sharing this. It must have been really hard to write. I cannot imagine having a child with Autism. My mom's best friend has a son who has severe Autism. It is heart-breaking. My best friends older sister has Asperger's. It has changed how I perceive others with this disease.

    Thank you for sharing.

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  4. I'm raising a son with moderate to severe autism and a daughter who is extremely gifted (5 years old working on multiplication). Both have their challenges. You are right on here... Autism is an epidemic. They are releasing numbers later in the summer and think the statistics are somewhere in the 1 in 80.

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  5. Thanks for sharing your story. And what can I say other than congratulate you for staying together with your husband? And to give you a big BIG hug? <33333

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  6. *hugs* Such a beautiful and awareness raising post. You are so amazing, Wendy, don't ever forget it!
    My first run in with autism was when I was in fourth grade and my brother was in sixth and he was friends with an Autistic boy. And all the teachers were surprised that my brother was able to connect with him and have him open up. This post reminded me of that and it warms my heart <3

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  7. Bonjour Wendy!

    Thanks to Twitter, I've now *discovered* you. And what a pleasure it is to read your blog, especially this post which has touched my heart. I've shared it on my Facebook profile in hopes that people will learn more about autism and check the symptoms for early intervention.

    With love and deep admiration,
    Mudd
    xoxo

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