I was on the Autism Speaks forum earlier today where a post was giving information on some of the FEW resources that there are for parents to help their families. After reading of how little there is and going to some of the sites mentioned, plus the comments from parents who are at the end of the ropes... I added my two cents. Since it was somewhat lengthy and most visitors want more of our input on this blog I'll put it here for you as well - - -
We KNOW how hard it is to find ANYTHING or organization out there that can provide needed funding. With our six its been a journey of frustration and a whole lot of 'why bother any mores'.
Some examples are: We are low income, not by choice however. I've lost jobs, been told time needed to take care of family needs, "aren't working out for the company" or had to quit because I just need to be home to help my wife. She is such a hard working Mom, but with near clinical depression and fibromyalgia she needs her Zoloft and 2 plus naps a day to just make it.
We get SSI for the 3 youngest, the 3 oldest are not 'severe' enough. Our state has a program for respite, but only 2 qualify. We were hoping to actually GET respite, but at least 2 of the children get some time out for a couple of hours a week.
There is a state medical program that would provide some services for us and the three oldest, but after going back and forth for 5 months trying to gather info from places that wouldn't cooperate and every other roadblock imaginable we've said to heck with it.
No OT, PT or MSG :D We've made inquiries of various state offices about additional services but none either know of any or are of the understanding that what we have is about as good as it gets.
I've sent letters, emails and made calls to see what various businesses and organizations could do BUT I've yet to get any offers. Now don't get me wrong here, I don't want a free ride just because we have 6 ASD children. I'd be VERY willing to give speeches, presentations, etc. either for pay or exchange for services given. I guess with us having 6 on the spectrum they see costs being too high and 'head for the hills'.
If it wasn't for a couple of months of great t-shirt sales, some generous donors and that tax rebate we'd be on welfare right now. But, we are trying to stay off and not be anymore of a burden on the system then we are already.
We are just looking for what we can do to help these 6 beautiful children we've been blessed with to have a better life. To be able to communicate, understand and participate in the world around them.
So we try to maintain a cheerful appearance as much as possible and I feel we do pretty good most of the time. I'm glad for the Autism research and information organizations HOWEVER, there are too many parents that search and struggle to find the means to help their own children.