Happy Easter

[Guest guest]

I have not posted on this group for a while. I have a 23 year old

daughter with severe autism. She was verbal and bright until her

regression began at age 2.5 and continued until her last word was

heard at age 5. As the old lady here I can tell you that in order to

move the ball ahead, we need to fight for all aspects of this

spectrum to be respected. There has been lots done in regard to

research, diagnosis etc but the enlargment of the " spectrum " is

making it more difficult to have all needs met. My daughter is

severely autistic and if there was a magic wand I would use it to

get her " back " . She can no longer live at home and as " beautiful " as

she is, there is no way to keep her safe in a home environment. I am

asking for your help to understand that my choice may have to be

some of your choices some day but neither you nor I may have this

choice in the near future. My daughter lives in a developmental

Center in NJ and the movement across the country is to close them.

As children get older and somethimes develop aggressive and self-

injurious behaviors that due to their adult strength and size cannot

be controlled in a typical home or group home environment, these

developmental centers provide the resources, staff, expertise and

support needed to keep our kids healthy,happy and as productive as

possible. Without this 'safety net " there will be no options for

families. The same argument that comes over inclusion for everyone

as opposed to having specialized schools and programs for those with

severe needs works here. A goal is for the " least restrictive " but

that also must include criteria for the person to " derive benefit " .

I belong to a National Organization called VOR that provides no

services and is only a grassroots advocacy organization to preserve

choice! I would love to have those on this list who may be feeling

that home placement is getting more difficult to reach out to me

separately. I am trying to find those who need the specialized and

intensive supports for their kids across the country to tell them

that they are not alone.

Happy Holidays to all. We all love our children and want them to

have full and happy lives. Robin Sims