Looking down the road

I know that everyone with an autistic child, whether or not they have mild autism, severe autism, or autism spectrum along with another disability such as bipolar, deafness, blindness, or something completely different, doesn't know what they will expect as their child (children) grow older. It is almost too overwhelming to look at as everyday you are working with your children to make them the best that they can be, along with still mourning what you wish they could be.

In approximately 1996 when Chris would have been 5 or 6, our county MRDD workers stood in our kitchen as they evaluated Chris for special needs services as an elementary school child. This was heartbreaking to me anyway, just facing that Chris would be attending special needs classes and having services for someone with a disability. We didn't even want to face that even though he'd been diagnosed with autism for 2 years.

As the workers spoke with us, they said, it is good to get your child on a waiver, or more than one, as you never know what the future will bring. They described these as one) a waiver on which he could get adult services in his own home and two) a waiver on which he would be placed in a home for special needs people as an adult. I don't remember if he was on any other waivers.

We did sign up for these waivers, hoping we'd never need them. However, in 2008 we did have Chris go to a group home, as a 17 year old. This is more described in my other personal blog and I'm sure I will bring it up again here, as things are still unfolding in that area that we don't know the results of.

Two lessons here, though, I would say to always sign up for the waivers when your child is young. You can always so no later. It's never permanent either -- we said no to the residency waiver 5 or so times as his name came up, from age 13 to 17. The 6th time we said yes, and he's been in a very caring group home for a year now.

His I/O waiver listing was messed up. In 2002 I called to see where he was on the list -- he WASN'T ON THE LIST. They told me he was on in 1996 and never put him on. We don't know to this day what the six years lost would have done. Maybe he could have already had an I/O waiver and had someone in the home to help him already. We'll never know. Now we are awaiting the I/O waiver in earnest, as he may be coming home from the group home as he is yelling too much and not sleeping.

So another lesson, in addition to signing up for the waivers early, also CALL every year or so and make sure they're still on the list and where they are on the list.

More soon.