Hi everyone!! It has been a while since I've posted. We've had a lot going on over the summer, and hubby is possibly needing surgery, so I've been offline for a while. I hope everyone is well.
I've been thinking for about a year now of starting a non-profit for families of spectrum kids, and lately I've been doing a bit more work toward launching this organization, but I'm now needing some thoughts and input from the autism community.
Here are my thoughts:
-we need an organization that not only has links and info, but takes families from pre-diagnosis through school and everything in between (what to do now, where to go, treatment options etc.) I know that if I didn't have a friend with a child on the spectrum I would have been lost--she literally told me what to do next etc.
-we need this community to be a central point for families to find appropriate doctors/support groups/etc within their own communities (think click on a state, then city and a list of all known resources is available)
-we need an organization that not only fund raises for research, but focuses on the financial needs of the families (if I have learned anything since my son's diagnosis it is that many families struggle financially to get the help/support/therapies/products etc. and it needs to be addressed)
These are the main things that I would like to cover with this organization with a focus on providing autism-related financial assistance to families.
My questions are:
Have I somehow missed that there is an organization out there that does any or all of these things?
What, in your opinion(s) is the greatest need in the autism community that is not fulfilled elsewhere?
Any and all thoughts are appreciated. I don't want to reinvent the wheel, these thoughts are things that I've heard repeatedly that are lacking when speaking to my local autism community, and I feel like I should do something about it if, in fact, there is a need.
mom to Josh (7, AS), Justin (3, nt)