This posting was submitted from a mother who wanted express the issues of cost, schools, and the daily struggles. This item was emailed to this blog---AR
Where to Start Addressing Important Autism Issues?1 ~ I think one of the biggest things the media misses is to focus on how can we help families with these kids survive financially. So many of their treatments are considered, "alternative," and the family has to struggle to pay for it. Usually one parent has to stay home to be there to help the child through school, in home therapy, ect. and the other parent is suppossed to make enough money on their own to pay for all of the so called, "alternative," treatments. Getting disability to supply money for your child is kind of a joke too. Unless you make almost nothing they will give you nothing. How are we suppossed to help our kids when we can't afford their treatments or we have to pick and choose which ones we do because we can't afford it? Does most of the world know what it feels like to have a child depending on you for treatment that may make or break their future and you can't give it to them?
As a parent that loves their child like nothing else in this wold it is absolutely devestating. You feel like you are letting your child down everyday. Not to mention that many insurance companies will not cover children with Autism. My husband lost his job and we lost our insurance. When we tried to find new insurance it was a nightmare. Every rep. I would talk to would be ready to sign me up until they heard that my son is autistic. As soon as they hear that they would tell me, "i'm sorry we can't cover you." That would be the end of the phone call. 2 ~ In addition, IEP's are a nightmare for parents because they are fighting to get what their child NEEDS and the schools fight them on it. While they are battling the school their child is going without services they desperately need and falling further behind.
There are some political issues such as funding and testing that supplies that funding that definetly play a role in the types of services the school will provide for our children, however, it's concerning that it all seems to come back to the money. If the bottom line is that schools are having trouble paying for these services then shouldn't we be addressing how to overcome that problem? With as many children that are now being diagnosed with Autism it should become increasingly obvious that we need to do something to provide these children with a fair chance at an appropriate education so that they may one day become productive members of our society.
As parents I cannot express how horrible it is to have to fight a school system to provide services for your child so that they may have a chance at a bright future. It makes our hearts ache to watch our children take a back seat to nuerotypical children. While it is equally important to provide an appropriate education for nuerotypical children our children should never have to be left behind.
3 ~ While I think it is admirable that many talk show hosts are trying to raise awareness about autism I think it is also important that they try to find guests for their shows that are relatable to the vast majority of parents dealing with this issue. When the guest speakers are celebrities, (no offense to any celebs with autistic children...ultimately we are in the same boat) with massive amounts of money to help their children, it allows the aspect of financial hardship to be overlooked. The majority of parents that have children with autism STRUGGLE to afford the treatments for thier children and recieve minimal, if any, help from their county or state. My own family for example, had to struggle for approx.
5 months strait working overtime to be able to afford the testing necessary to provide treatment to our son. After the testing was done it cost us approx.: $100. per month to retain a DAN doctor, $122, per month for B12 shots, $350. per month for bio-supplements, $300-500. per month for the GFCF diet (we have 2 kids on the diet) and thats with only one parent working because I had to stay home to be there when my son was getting his therapy which was 40 hours per week in my home. I would do it all over again to help my son, but, our family has definetly struggled and we continue to. The point that many families with children with Autism go through this gets lost when the main speakers are celebrities with a much higher income than the average family.There have been many other wonderful points brought up about the necessary awareness in different areas that need to have attention drawn to them. The bottom-line is there is still lots of work to be done. However, we as a community of Autism - parents are a strong community, a determined community, a dedicated and loving community that will not give up in raising this awareness. We will stick together for the betterment of the future of our children.