The better half made some comments on Facebook today that I thought needed some syndication. After her comments, I added some of my own.
Today is World Autism Awareness Day as well as Light it Up Blue for Autism Speaks Day. The entire month of April is Autism Awareness month. This all sounds great, right? As the day has gone on, I have grown more angry, frustrated, and sad – the most I have been since April of 2006. Awareness and advocacy are great words, but as CDC released new numbers just days ago, it seems there is NOTHING behind these words. As I sat at advocacy training last week with other parents and professionals, the level of desperation that exuded from these parents and professionals was unbelievable. The fact that ALL of our Ohio legislators were then invited to a cocktail party and approximately 4 or 5 of them even bothered to show up shows a height of APATHY that is extraordinary. The fact that there is no help, no funding, no services, no insurance, and we can’t get more than 4-5 of our legislators to come for free drinks and snacks for 30 minutes to listen to our stories, should tell us all something.
I listen to other autism moms who have had to sue the state in order to get the services they need for their children, the mom in a neighboring school district whose 3.5-year-old’s IEP has just been taken away so the district won’t have to pay for the autism scholarship, the older mom whose 25-year-old is living in a group home and now isn’t sure that the group homes are going to be funded appropriately in Ohio and she can’t DIE because she doesn’t know what will happen to her child. I watch my child take handfuls of pills in the morning and evening and when we go to the doctor, the question is, “What are we missing?” I feel her head press against mine in church and her push my hand over her ear so tightly that it causes pain to my hand and know that she is feeling physical pain from the music and knowing there is nothing I can do to help her. I speak out for her as well as other special needs children and I watch myself get “unfriended” on facebook as these special kids might bother your typical kid from learning.
So instead of just being AWARE, we NEED to take the next step. I don’t know yet what it is, but we have to come up with something more. Something for the 1 in 88 across the nation, the 1 in 32 boys in Utah, the 1 of 2 at the house.
Not that anything needs to be added to the better half’s remarks, but I would like to add that there have been successes here at the house just from watching one kid when she’s healthy or sick, when she’s having a terrible day or a great day at school, etc., that there have been successes in our kid’s IEP (Mom’s a good fighter), that the other day she asked me if I was OK and offered to rub my back when it popped heinously…and if this family can have some level of success just by reacting, how much success can the right company with the right study have?
Surely there has to be people smarter than we are who with the right salary, motivation, etc., can put the two-and-twos together to break the mysteries that are the Autism Spectrum Disorder wide open, if one mom’s vigilance can put a significant dent in a child’s autism.
Think how much money could be made by a company whose customers are no longer forking money out for supplements, occupational therapists, speech therapists, tutors, special education teachers, guardians, homes, etc., etc., etc., and buying their beneficial treatment that works with a demonstrable pathology. The people that find the cure(s) will put Apple and Pfizer to shame, and they would have the undying gratitude of millions. Do it for the money. Do it for the gratitude. Do it because finding answers is what we human beings do. But do it. Please.