How to parents of autistic children cope with life? Speaking for myself, I don’t know. I know I’m depressed and tired all the time. Recently I have been getting sick after eating. The stress is killing me. How are we as parents supposed to cope with this level of chronic stress? There is little to no help out there. For the amount of kids that are autistic you would think that there would be more support centers. At least in my area there isn’t even a support group for parents of autistic children. We get lumped in with support groups for other disorders.
Respite care? What’s that? Aside from my parents we get nothing. There needs to be support for the parents because we are all on the front lines. Lizze and I have become like shut in’s because we rarely ever go anywhere. We can’t even let the kids play outside because the kids in my neighborhood make fun of Gavin. The parents of these kids are even worse and use words like “retard” when referring to Gavin. It takes everything I have not to react to these things.
As parents to these special needs kids we need support and understanding not judgement and ridicule. A little compassion never hurts either. I have read about movie theater’s that have a night just for autistic kids and their families. They show movies that are hand picked to be the least stimulating as possible. These are things that can help parents cope and make them feel a bit more normal. I wish there were more places out there that did things like these.
What are the stats now 1/110 kids are autistic? Why don’t we see more being done on a local level. In my town which believe is on the map has nothing. We have to go through MRDD and that’s if there is even funding available. We have done everything on our own with the big exception of his school. We are lucky in that area because we have a school just for autistic and adhd kids about 5 mins from my house. But there are so many kids that don’t have this opportunity because there are no special schools.
I guess I just needed to vent a bit. I wish I could put into words what our lives are like. I mean do it in a way that people will just understand. As parents of these special needs kids our plates are already full. We need things to make life easier not more difficult.
I agree with you completely that they need to do more locally for these special kids and the families of these kids. They say there are support places but them seem to be hidden where no one knows where exactly they are. Which is why I always throw around the idea of a social site for support or creating a forum type setting for support system cause there is nothing out there. I had thrown around the idea of social networking site for autism support but wonder if people would be interested or would it just be me working at it alone which is what usually happens. Let me know if you two would be interested. I know it's not local but local enough as some of us can get. And it is a support system as we (Autistic Parents) need any and all support we can get.
I completely understand what you are saying. If is not fair. U have to be everything 24/7 and no human can do that. Are u familiar with "Generation Rescue"? U can get a lot of info from them to help u out in the areas u mention above. They also have programs/scolarships for famlies dealing with Autism that set up and help pay for services, respite, adaptations to your environment, etc. Some people don't like Jenny McCarthy (she founded generation rescue) and her views, but u don't have to buy into her and her ideas to work with generation rescue. They really only want to help because of the reasons u listed above. Easter Seals is another resource that could at least find respite providers in your area. I worked for Easter Seals as Asst Director of their inclusive child care program and I am still in contact with the National Director of all Easter Seals childcare programs, so if u get any run around I might be able to cut through some red tape for you. If you give me the name of the town u live in (or one near u, if u don't want to share too much info.) I can do some research 4 u to try and find u some respite, services, and financial support, through ES or other organizatins I am affiliated with. Let me know and I would be more than happy to do what I can. My e-mail is firstname.lastname@example.org or respond here. -Danielle