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.
We know.
Dad
Friday, June 6, 2008
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6 comments:
I agree totally Dad. We only have one on the severe end of the spectrum. After moving across the country in search of a better life for the three of us we had to fight tooth and nail to get anything by way of services. We were finally able to get ours on Medicaid (she adopted us ;) ) to pay all of the copays which were just about crippling us in just medicine alone. We almost got to the point of just giving up and continuing to struggle.
We are finally able to pay all our bills on time (mostly). The Lord blesses those who give it their all. We are blessed in so many ways I can't count them all.
Keep up the hard work with your terrific kids. They so deserve a dad like you who gives so much.
Is it too much to ask about your oppinion on the vaccine- autism relationship?
Ive also heard wonders from people who put their children on special diet. Have you heard or tried it? I personally know someone who has seen Huge changes in her child since the diet.
The cost of therapies that children on the spectrum can benefit from are ridiculously expensive! My son was receiving 2 hours of OT and 2 hours of feeding/ST a week and our bill was over $1,000 per week. We had Babynet pay for it until he turned 3, but now we have nothing. We are applying for a special version of medicaid (TEFRA) that is not income based so cross your fingers for us. My husband has a very good paying job and we are in the upper middle-class bracket, but our insurance does not pay a PENNY towards anything dealing with autism or developmental delays. And even though we don't live paycheck to paycheck like a lot of parents of children with autism, we cannot afford to go and drop $50,000 a year on various therapies that are required to give my son the needed tools to help him get the most out of life. Its so frustrating!! Research shows that Early Intervention is key... then why will no one help pay for it? It would be cheaper in the long run!
Michelle,
No it's not too much, that's why we are here. ; )
Not sure if you caught the Larry King show on 'World Autism Day' that had Jenny McCarthy and a bunch of Dr's. Anywho, we were there too, briefly, where I told of our opinion on the matter.
Autism is a spectrum disorder that we believe is caused by a spectrum of reasons. We believe that genetics is a factor (duh!) and that vaccinations are too. Our first 5 got nearly all to their recommended shots. Before Mary (3) was born we had been reading books about the various dangers that vaccinations could cause. So we decided to NOT give her any.
Recently she has been evaluated and it was found that Mary has a high incident of the the Autism genome. We've figured that if we had given her any shots it could have been likely she would be very Autistic like Sarah and Ammon.
I am looking to find where your tshirts are. I write about autism awareness items and could include yours as well.
http://autismspectrumdisorders.bellaonline.com
There is a scholarship fund for financially disadvantaged children with autism. the url is http://www.autismgrant.org/
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