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Disgusted Disheartened and Exhausted Posted By: janneane7
Posted On: 11/09/2007
Boy I know no one warns you what it is like to have a child with Autism but even after all these years of living with Autism and 13 years of working in the autism field I had NO IDEA how bad things would be when Andrew left school.

Adult services are a joke. Their knowledge of Autism is where the public schools knowledge was back in 1993. Stop and think about how good or bad public school is right now for your child and no imagine how serious the lack of knowledge was in public schools 14 years ago! Now fast forward to today because that is where the knowledge is in adult services.

Sure there are probably some great programs that are few and far between but I visited many trying to decide where Andy would go. I saw VERY FEW adults with Autism. (Ratios ran around 64 adults with MR and 6 adults with autism, or in the case of where Andy goes 24 adults with MR and with Andy 3 adults with Autism.)

Most of the people in programs have varying degrees of mental retardation and it seemed many were between mid 20s and mid 40s.

In the day programs I saw them doing puzzles (this is a daily activity at Andys program) watching TV (another daily activity at Andys program), sitting on the floor rolling a ball back and forth to one another, and I actually saw group of 30 and 40 year olds doing the hokey pokey for exercise (I almost had a stroke when I saw that!) or walking on treadmills. The MINIMAL work opportunities are almost exclusively recycling cans or cleaning jobs.

Andys first two weeks in his adult program there was so little for him to do that he was spending 3 to 4 hours a day shredding papers because that was the only thing there that was familiar to him. This is a kid who likes to shred but NEVER More than a half hour because after that he is DONE!

Because he is so bored and isn't getting enough physical activity he is OFF THE WALL when he gets home and is having trouble sleeping at night. He is now interning at a discount store 2 hours a week during the program but still the rest of the time is boredom to the nth degree.

What might be even worse is that Andy is SO SAD (translation irritable and obsessing) He desperatly misses his school, their routines and all of the fun and interesting things he had to do every day. (and I used to complain there was too much down time there! HAHA!! They were non stop action compared to what he is doing now.) He constantly asks over and over and over to go to school or to see his teachers. But when I took him to visit last week he became so distraught he ran out of the school and didn't want to see anyone. I think it hurt him so much to know he couldn't go back to regular school.

It is just horrible to see your child in so much pain and to know what a wonderful school they were in and now they are DUMPED into "adult services"

And the WHY, of why things are so terrible is by and large these programs are funded by a combination of Medicaid and the state department that deals with people with mental retardation. In Massachusetts that is DMR and they are loosing funding every year for adults, so there is no money to have interesting and meaningful things for these wonderful people to do.

For higher functioning kids, those in between kids, (the ones whose IQ is above 70 so they dont qualify for mental retardation but who arent so high functioning that theyll be going off to college) they are really screwed because they cant get much of anything. The only good thing is that they are generally high functioning enough to hold at least a part time job if they can get help from their state department of rehabilitation assistance for a job coach. They also will need lots of help from their families.

I never thought that just months before my 50th birthday that I would be starting all over again from scratch, trying to get people to understand WHAT AUTISM IS, the needs of people with Autism, for them to grasp what best practices for Autism REALLY MEANS, and to face the double edge sword of no federal MANDATES like when your child is in public school (laws that say what your child must have for education) and no funding either.

Is it any wonder I am disgusted and disheartened and exhausted?
       
shannonj wrote this reply on 11/09/2007
I feel for you....and worry about the future for all our kids. Hopefully, most will be able to benefit enough from education and early intervention and biomedical treatments to not need such supports in adulthood, but for my son anyway, we are anticipating that he will need much support for his entire life...And I, like any mama, just want him to be happy. What will that look like?....Scary to look too far ahead, but if I don't, we might end up with very inadequate supports...Hang in there, and thank you for going before us.

carmel66 wrote this reply on 11/13/2007
I am so sorry to hear how hard things are for your son right now (and you). Yes, I can imagine how unprepared adult services is for him now. I have no advice and only a hug and say that whatever you and your son fight for - you are fighting for the next generation as well. I know it's hard to be the trailblazers (that what we are in our school district believe it or now). But it's also an important job.hang in there - Cathy

Bebop wrote this reply on 01/09/2008
What a well written summary of the crisis that many of us will face when our children enter the world of adult services. I know that early intervention can help some kiddos, but not all. There will still be a significant rise in the number of people requiring at least some support. You know, even if someone can attend college that is far from a gaurentee they will be able to support themselves and live an independent life. My son is 14 and I am starting to gather information about different service and education options for him. He will be adding a local agency that has supports in place for job coaching and training. I wonder if there will even be any available and qualified staff by the time he ages out of the school system. In my opinion, one of the greatest faults of the Medicaid system of today is frowning on and punishing agencies that turn a profit. If agencies that provide support services were able to turn a profit with oversight as to where that profit goes it would be a much better system that would encourage communities that are both functional and productive. Thank you for sharing your experience with us so we can all learn and grow.

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