April 2, 2009

World Autism Day

Today is World Autism Day. In honor of this day and of my Bubba who was diagnosed with High Functioning Autism at the age of 23 months, I wanted to share some stats about Autism. If your life has not been touched directly by Autism, you probably know someone who has. Please take a moment to read over this. Feel free to share it with anyone who may benefit.

Autism is a neurobiological disorder for which there is no known cause, prevention or cure.

1 in 150 people are diagnosed with Autism. It affects more people than pediatric cancer, diabetes and AIDS combined. (*That number is now 1 in 88*)

It occurs 4 times more often in boys than in girls.

Autism impairs the ability to communicate and relate to others.

It typically results in rigid routines and behaviors and can range from mild to quite severe (to the point of a person being "locked" inside themselves without the ability to communicate or even "notice" others).

Some children are this way from birth while others seem to have just "lost" skills and regressed (as was the case with Bubba).

Parents are usually the first ones to detect anything is wrong while many pediatricians take a "let's wait and see" approach. As a result, many of us parents find ourselves having to educate our pediatricians in the latest research and therapies.

Early intervention is absolutely critical.

Intervention and therapy can include physical, occupational, and speech therapy; biomedical intervention; special diets; social training. All of these are expensive (speech therapy is around $200/hr) and most are not covered by insurance.

Every child has different symptoms and responds to different therapies. There is no one way or standard for treating this.

Raising a child with Autism is hard, very hard. It's a lifetime job. It's lonely, frustrating, maddening, sad, surprising, depressing, rewarding, draining.

Autistic children look "normal" and so if they act up in public, people assume that you just have a bratty child and should be disciplining better. Many are even quick to let you know what they think about your parenting.

Many couples with an Autistic child end up divorced.

Many pediatricians don't keep up with the latest information that comes up about Autism because it's all anecdotal. Meaning, there isn't concrete medical research to back it up. How can there be? Every child has different traits and responds to different things. There is no way to do any conclusive studies when that's the case. And the funding is definitely not there. And so moms of Autism are experts on the subject. We've read all the books, studied the research, tried every option. You have a question about Autism? Find a mom of Autism, not a doctor.

I feel especially lucky in that Bubba responded so well, so quickly to intervention but he will always have his "issues" and life wasn't always this easy. He lost speech around 13-14 months and didn't speak again until he was 4. MC and I didn't go out together once in 3 years. For 3 or 4 years, I HATED going to church. It was just a battle of how long we could make it before Bubba was just too unmanageable and we would have to leave.

It's hard to call on even family and friends to help. If you're not even sure how to deal with your own child, how can you ask someone else to? Honestly, sometimes it's even hard to keep loving your own child when he's been biting you, screaming at you for hours, trying to claw your eyes out or even choking you, and all this during a time when you never hear him say mommy or daddy and definitely not I love you. Maybe he never will? How can you ask someone else to give him the same kind of unconditional love? It's not realistic. And so as moms, we are typically isolated and alone. No matter how many fits someone may have witnessed my son throw, they have never seen him at his worst. I'm not even sure if Dad (in my case at least since I'm the stay at home parent) has seen the depths that I have.

If it's possible to have a "typical" case of Autism, Bubba is not it. Most kids deal with more issues than he does. If you know Bubba, he seems like a "normal" kid nowadays. This should not be your picture of Autism. Autism is not just having a quirky kid. If you know someone who has an Autistic child, just stop and give them a hug. It's nice to have physical contact that doesn't come from having to restrain or redirect a speeding freight train of energy and determination.

I know this is long, but if you read this, parents of Autistic children will thank you for taking the time to try to understand it better. God bless your day!

2 comments:

  1. Sheri,
    I'm weeping as I read this! As the mother of a 16-year-old Asperger's son (who has other issues, as well), I feel in every fiber of my being all that you wrote. No one can know until they've experienced it. I'm so glad you are articulate enough to say it so well. I'm going to link to this post from my blog. Thank you and I'm praying for you.

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  2. Sheri, my heart breaks knowing all you have been through. I have witnessed it first hand and know I have not seen the worst. You have done an incredible job and Bubba is very lucky to have you as his mom! We all love him unconditionally but I do understand, there are times it is really difficult to like our children :-) I love you and am awed by your strength and determination. I am proud of you and the awesome job you have done with your son.

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