Fighting the Autism Fight

Lately it feels like if I'm not fighting the autism fight, I'm fighting about autism or for some kind of autism or special needs benefit. Even I get tired of arguing.

I'm finding that services don't come easy, even if they are available and entitled.

I'm finding that people that provide these types of services for a living do the very bare minimum like when writing goals in school or giving an assessment report.
I'm finding that like the military, Special Needs Agencies have their own code..."If they don't ask, don't tell."

I'm finding that the people offering these services have no problem trying to retract a service put into place and in writing in an IEP.

I'm finding that there are so many other resources out there and available but never offered up front, things like Physical Therapy, a Behaviorist, free Diapers, Medi-cal, outside parent networks, respit hours; instead you need to research these things or hear about them by word of mouth from some other poor parent who had to find out the hard way and then ask, or demand them. Suddenly, they're available.

I'm finding that agencies like Nursing Agencies don't know what the hell they're doing or how to keep track of someone's respit and day care hours because twice now, they've let our hours expire and then I end up paying for it and losing hours in the process to make up for their lack of systems and oversights.

I'm finding that there are two very divided sides to the autism fight, the medical and bio medical theories both of which no one can agree. To vacinate or not to vacinate...especially with what is going on in the news right now about this.

I'm finding that autism is very much a business just like any other business and that there are people out there who prey on the misfortune of families who are holding out hope...people like Dr. Julie Griffith who got into the business of autism to make a quick buck and who do not really care about the best interest of the patient.
I'm finding that the small things that make my life easier were things I would have never imagined, things like a short bus with a friendly bus driver and a kind, dependable nurse go a long way.

I'm finding that fighting a fight against autism at home every day with a Doodle Bug is hard enough, but when you have to constantly fight for help that is in place to do just that, HELP, it becomes stressful and a waste of energy. It's like doing a puzzle for hours and hours and finding out you are one piece short.

1 comment:

  1. I could have written this myself. I have a 7 year old with Autism, among other things. If we aren't fighting the school, we are fighting the doctors, or with my son, or with each other (my husband and I) because we are so tired and stressed at the end of each day. I wish you the best. I am currently trying desperately to find resources for my son.