Friday, July 25, 2014

Kickstart THIS! ?

While I like to keep my Facebook page on the lighter side, this space is where I come to be real. The reality lately is we are drowning in debt. Much of that debt is medically related. When you have a child with special needs that weren't fully diagnosed until said child was struggling and slowly drowning in anxiety and pressures at school, you find you have a lot of catching up to do.

Instinctively, we adapted to many of our son's quirks and limitations here at home. We never looked at things that way, before his autism diagnosis; that we were adapting. We were managing and learning to be good parents at the same time. He was getting by ok, so we thought. If we had known how much he was struggling, we would have gotten testing and accommodations MUCH sooner. We just didn't SEE it. He was and is our brilliant, handsome and challenging child. That hasn't changed. How we approach certain things, accommodations at home, and adding supports has made a substantial change for the positive in his behavior and ability to cope. Changes at school were long long overdue. Our mistake was in assuming the personnel at his school knew what they were doing. They didn't.

So changes were made/forced and our boy was moved into a new school environment. And he flourished. Getting him there was a major challenge. Since our local school district was too busy assuming Tyler's issues were OUR fault and kept pointing fingers at us, we had to go outside the system for help. We got our own child education advocate, a plethora of testing from a neuro-psychologist, a new psychiatrist (purported to be the best child therapist in the state), tried multiple medications until the right combo was found...it was a months long grueling effort but it was all worth it in the end. Tyler is now where he needs to be. For the moment.

But...ongoing therapy with bills from 2 therapists, medications, hospital visits, adaptive technologies, and catering to a child with multiple environmental sensitivities has taken its toll on us, financially. Insurance doesn't cover much, sadly.

So I found myself thinking. I've been involved in multiple fundraisers over the years for neighborhood kids and children of friends who were gravely ill.  Having a child with a life threatening illness is a horrifying circumstance. I have always gone out of my way to support charities and friends when ever I could. But what about kids with chronic and life-long illness of other sorts. Cancer is something we can work to cure, but what about mental illness or neurological damage like autism? It's not something you can cure. [Sorry Autism Speaks, you are on the WRONG track.]

Plus, there is a certain stigma associated with mental illness. You don't often see fundraisers for that. Why? We are looking at a lifetime of ongoing medical expenses. What makes neurological damage or a chromosomal abnormality so unworthy of charity?  History. We are trying to overcome centuries of mistaken impressions. People with mental illness aren't "crazy", or possessed by demons, or an embarrassment to their family (but that is how they were treated in the past and right up to current day.) It isn't shameful to have problems with your brain! We need to stop acting like it is.

 So I am still thinking. Can I do a fundraiser? If the dude looking for help to make his potato salad can start a Kick-start campaign, would it be wrong to do something for my son? What would people's reaction be? I know a few folks close to the family would really raise some eyebrows over my idea, but they are super judgmental about everything and everyone. No winning there. But in general...what do YOU think of this idea?

I wish I had more readers so I could take a poll. But seriously, how "sick" does a child need to be to deserve an outpouring of well-wishes, sympathy, support and, yes, a fundraiser?

1 comment:

Sara said...

My brain is not working this morning, so apologies for basic comment! I do think that this is a good idea, and that as long as you explain it as you have here, people will be glad to help and donate. If you go ahead with it, let me know because I would be happy to donate.