Life Of Jason

This Saturday is the Walk Now For Autism event at Jordan Valley Park. Registration begins at 9am with the walk starting at 10. Families from all over the Ozarks who have children with autism will gather to raise awareness of autism and to raise money for research to help find a cure for their children.

Did you know that 1 in every 150 children has been diagnosed with an autism spectrum disorder? That’s more than childhood cancer, Down syndrome, deafness, cystic fibrosis or muscular dystrophy. Another child is diagnosed with autism every 20 minutes. Autism is the fastest growing childhood disorder in America.

Still, with all the data to show how much autism effects families, funds for research are only a small percentage of research funding in America. To give you an idea of the comparison:

• Leukemia, effecting 1 in 25,000 children, Funding: $300 million
• Muscular Dystrophy, 1 in 20,000, Funding: $160 million
• Cystic Fibrosis, 1 in 5,000, Funding: $75 million
• Juvenile Diabetes, 1 in 500, Funding: $140 million
• Autism, 1 in 150, Funding: $15 million

I don’t want to be morbid but I’ve actually had people tell me that the reason autism doesn’t gain more funding is that because it doesn’t kill the child. If they died from it there would be more funding. I’d like to believe that’s not true but the numbers seem to bear that out.

The problem is that autism alters families forever. I know there is a good chance that my son Elijah will require care for the rest of his life. It’s a job that I have no problem taking because God entrusted me with Elijah and I will do all I can to fulfill that blessing but it doesn’t mean that my life will not have challenges I never could have foreseen when he was born.

For example, autism isn’t covered by many insurance plans if you don’t use the corporate hospital way of treating the children. Because I don’t want to see my son pumped full of toxic chemicals and treated with natural enzymes, vitamins and other holistic treatments there are bills that run into the thousands just for medication. A visit to a doctor that specializes in autism spectrum disorders can be $150 just to talk to them for a few minutes.

We always see the Jerry Lewis telethon and other nationwide fund raising events with families financially devastated by the costs of treating their children. I’m not dismissing any of the struggles of these families because they’re in the same boat as my family. It just would be great if families of autistic children would receive the same attention and have people realize that just because our children do not die from autism it can have the same effect upon the families.  Unfortunately, Michael Moore’s not out there doing a documentary on autism and families who have to face it.

The stress of having an autistic child can really wear down upon parents. I wrote an earlier blog about an encounter at a local restaurant and that’s just one of many times I’ve had people comment about Elijah without their knowing of his autism. As a parent you can do everything imaginable to get your autistic child to quiet down or stop a particular action and they will still continue for reasons we still do not understand.

Still, the most heartbreaking moments for me come when Eli wants something and tries to communicate it to me but can’t speak the words. (One of the elements of autism is an inability to communicate verbally.) Over the last few years the half dozen times weekly therapy and treatments have helped increase Eli’s verbal ability but at age five it’s still on the level of a two year old.

Eli would want something from a cabinet in the kitchen. He’ll take me into the kitchen and point to the cabinet but can’t tell me which item it is that he wants me to give him. As I guess and point to different things, Eli will say “NO!” and I see the frustration building within him. He wants Daddy to get him something and he can’t understand why Daddy isn’t giving it to him. Why Daddy is pointing to all these other things. That may seem like a small thing to you but when you’re looking at your child crying and getting angry because they can’t tell you a simple thing like “cookie” it tears your heart in pieces.

Don’t even get me started on how it hurts someone who was in a communications business for twenty years to not be able to have a conversation with his five year old son.

I would ask you please to take a few minutes to visit Autism Speaks and learn more about autism and how it effects families.

If you would be willing to donate to help support autism research, click here to visit my walk page to make a tax deductible donation to Autism Speaks. If you have no other plans on Saturday morning, why not come out and walk with us? I know I would appreciate seeing the support of our community that’s not directly effected by autism and I know many other families around you would appreciate the same support.

Finally, if you are a Springfield area blogger, would you please consider an entry to your blog today or tomorrow to alert people to Walk Now For Autism? I’m not necessarily asking for a link back to this blog but just something to let people know the event is happening at Jordan Valley Park Saturday morning at 10am.

Edit: We have been invited to be on the Vincent David Jericho show tomorrow, Friday September 7th, between 7:15-7:30. If you have a chance to tune in, please do!