1 in 88: Life with Autism

As I sat in my son’s IEP meeting Wednesday of this past week, I felt that the people seated around the table are genuinely concerned about my son’s success. As we sat and chatted, exchanged laughs, I felt that though we have hiccups in the road, they are receptive to what I think, feel, and I hope know about my child. But I can not say the same for all parents with children on the spectrum have the same experience that I have when I walk into an IEP meeting. The numbers are out and have been for some time, 1 in 88 children are diagnosed, 1 in 54 boys. We are in an epidemic. Some states are ahead of the curve with Autism training being required for educators, Autism divisions in every school district, and more awareness for their staff and the students in the school.  The cost of raising a child with Autism is staggering and draining both emotionally and financially.  The cost of raising my children whom I will denote as children A and B, cost $2.3 million dollars a year per child in their lifetime.  In my case, that would $4.6 Million total, now let that roll off your tongue.  As a parent on the battle field, because it is a battle field, it is an emotional experience without having to factor in the cost of their needs.  This thought is daunting.

Photo courtesy of Time Magazine

So the reason for my blog post today is because I talk to parents almost everyday and the parents that I chat with are sometimes lost.  They feel that their children should be getting services that they aren’t that would make a difference, they feel that they don’t ask the school for much, yet, they feel like their child is not progressing.  They do not feel that they are getting their FAPE, Free Appropriate Public Education and that they are getting push back from their education team and often made to feel like they are on the outside looking in.  The rich seam of conversation always comes back to the schools, our communities, and the world not being prepared for the influx of our kids.  They were not prepared for what was to occur.  I imagine that you are sitting at your computer, phone, tablet asking yourself why were they not prepared?  We have known about Autism for what seems like ages.  Parent’s are not ready for autism.  Autism is a silent thief that sneaks up on you, catches you unprepared, and steals the child that you know.  It is painful.  It is gut wrenching and ask I sit here and write this, tears are forming to think about the pain and struggle that my little family has gone through over the past six years.

There are experts that can tell you stats, educators that can give their professional opinion, but a parent that lives this 24 hours a day, seven days a week is the true expert on their child.  Do not discount our abilities, our thoughts, ideas, or experiences.  What may not work for my child may work for another child.  Education, just like medicine, is not one size fits all.  We are growing, evolving community and there is little education given about our children and the bleak futures some of them face.  Legislators, teachers, librarians, nurses, doctors, and police officers all need education at one point in time to understand that not all of our children are high functioning and not all of them rock and flap in a corner.

My hope for South Carolina is to see mandatory training for educators, police officers, and nurses.  All of our kids do not rock and flap in corners, yet, because you walk up to a 14-year-old six-foot tall boy that weighs around two hundred pounds, does not mean that he will see or respond to you.  Some of our kids are runners, some are overly complaint, and all of our kids require constant redirection.  The spectrum is large, it is vast, and we do not know what causes it and we do not know how to stop it.  Once you have seen one child with Autism, you have seen one child with Autism.  So in the coming days, weeks, and months, ask your legislators to support education for all children especially those with a disability.  Ask your local police officers if they provide training on Autism and Autism related disorders.  Reach out in your community and see what you can do to help someone else that is struggling, especially those with a new diagnosis.  Just because the mom in the grocery store may have a five-year old sitting in a cart screaming to the top of his lungs doesn’t mean that the child is a bad child, think about  and know that this mom may have a child with autism that can’t deal with the sensory of being in the store but she can’t afford to pay a sitter to give her that moment’s respite to grab groceries.

The numbers are 1 in 88 and 1 in 54 boys.  If you  don’t know someone with autism or a with a child with autism, you will know someone or a child with it before the end of the decade.

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