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janneane7 - Jan, Andy and Adults with Autism

City: somewhere just east of Providence RI
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Country: USA
Member since: Oct 23, 2007
Last logged in: Dec 01, 2008

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Mother, Parent Information & Support Provider, Self-Stimulatory Behaviors, Echolalia, Anxiety

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janneane7's Bio

Hi everyone

My name is Jan and I am Mom to my wonderful son, 22 year old Andrew who has regressive autism that is fairly classic in it's presentation, (the result of his MMR vaccine at 16 months.) He also has bipolar disorder and tourettes syndrome.

I also have a wonderful (NT) daughter Allie who is 25 and working on hers Masters Degree in Fine Arts.

I work for an Autism agency and spend the rest of my time advocating for my son. I am trying to get the people in power in the adult service world to understand what "Best Practices" are for people with Autism.

I have been married for 26 years to my DH who is a sweetie and very content to let me do the "autism stuff."

Andrew has just transitioned from school to adult services, a very disheartening event! Adult Services knowledge about people with Autism and their needs is generally where the school system's knowledge was back in 1993!!

I am really hoping to be able to corespond with other parents of young adults with Autism who are also strong advocates for their sons and daughters. This is a tough enough road to travel, without having to do it without being able to share ideas with others who are also facing the similar issues.

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Support Families Day to Day

by janneane7 on 08/19/2008

My wonderful son Andrew, his Dad and a couple of Andy's mentors will be walk for Autism on Spetemebr 20th.
I am the chairperson for the Hearts & Hand...

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My wonderful son Andrew, his Dad and a couple of Andy's mentors will be walk for Autism on Spetemebr 20th.
I am the chairperson for the Hearts & Hands Walk for Autism and Family Fun Day and I know that although research is important, it is also VITAL that families get the help they need RIGHT NOW as they deal with the challenges Autism brings to their everyday lives. 
I know this because I have lived with, and watched my son deal with Autism for 20 years now. I also understand the challenges because I talk to dozens of parents each week in my roles as Resource Specialist and as the trainer for Autism 101 and Understanding Sensory and Behavior Challenges. 
SO I am proud to say that ALL THE MONEY RAISED GOES TO PROVIDE FREE SERVICES AND SUPPORTS FOR FAMILIES!!

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An ironic start to Autism Awareness Month

by janneane7 on 04/02/2008

Talk about irony... today, April 1st, is the 1st day of Autism Awareness Month, it’s April Fools Day and it was also Andy’s 1st ISP (individual servic...

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Talk about irony... today, April 1st, is the 1st day of Autism Awareness Month, it’s April Fools Day and it was also Andy’s 1st ISP (individual service plan) meeting (which is a plan for adults in day programs/adult services.)

I don’t even know where to begin except it was a total shock to the system.

I KNOW, because of my work, through friend’s experiences and my own experinces over the years that IEP meetings can be difficult and even contentious, and that school systems can be difficult to deal with… still in all my experiences I  don’t remember ever feeling so disheartened.

The first 3/4 of Andy's ISP meeting was fairly meaningless, at least in my book. As part of Andy’s IEP we always had to write a “vision statement” (it’s mandatory in my state) that spoke about our vision for Andy for the future. It would be a paragraph or two… fairly short simple and to the point. Today was a protracted exercise in writing something similar to a vision statement except I found little meaning in any of it. As I listened I knew (like only a parent can know) that the things we spoke of would very likely never come to fruition.
 
We went over things like his community membership, (going to the Y once a week with his dad…whoo boy!) his relationships (not just having paid staff in his life… yeah Like they are going to change that????) and his “residential life (what he does at home for chores ect…) None of these things will be improved or changed at his day program and it just felt like such a fat waste of time.

When we finally got to the goals and objectives Andy’s coordinator looked to the person who runs the day program and asked so what are the goals he will work on? Well I almost fell over. They are asking the program person before me? I sat stunned. The person who runs the program (who I like) said that there were 5 goals. It was then I found out that it was rare to have 5 goals, usually there are only 2 or 3.

More stunning stuff was to come when I discovered that the OT and the SP&L therapist (each come in once a month or so to do evals or make some recommendations) EACH, in slightly different worded recommendations suggested as a goal for Andy to learn to follow a visual schedule.

I felt sick.

Andy has been following a visual schedule since he was 8 years old…

At least the OT also made a sensory recommendation, BUT I especially couldn’t believe the SP& L person would make that recommendation.

The day this person evaluated Andy I had given her an extremely detailed “social communication” evaluation from an Autism expert who used the SCERTS guidelines to asses him. I SPECIFICALLY asked her to please use one of the recommendations from that evaluation because of the expertise in Autism that the evaluator had, and because I felt the NUMEROUS recommendations that had been made in the evaluation were so important.
Even worse was those of us at the meeting had just discussed in great detail how Andy had to work on his communication skills, due to how his serious difficulty with communication impacted nearly every facet of his life, but especially his behavior and also ability to interact socially with others.

I asked if I couldn’t contact the therapist to discuss other options for his communication goal. I said it was absolutely vital that he have a goal that was related to his social communication skills. BUT, I was told by the boss of the person who runs the program told “no”, we have to have another meeting with everyone present. (I suspect this is because of the complaining I have been doing about the program and they don’t trust me as far as they can throw me.)

Hooo boy another meeting!

Another disheartening thing was Andy’s work. At school he worked about 6 hours a week. I expected that due to the nice skills he had developed and because of the few nice strengths he has, that his work time would be expanded. When Andy started there, I negotiated with the dept of mental retardation for funding for 4 hours a week of a job coach for him (to be shared with another client) so Andy could do volunteer work 8 hours a week.  Little did I know that 4 hours are work time, 2 hours are transportation time and 2 hours are for the job coach to do paper work.(I don’t think that there is anyway on God’s green earth that the Job coach could possibly have 2 hours a week of paperwork for Andy when he is only working 4 hours a week)

I am finally, truly, coming to understand that Adult programs are another world.

Because most adults with autism get most of their funding by Medicaid, at least in my state, no teaching of anything but “lifeskills” is allowed. Life skills meaning cooking and personal health, like exercise.

I am finally, truly, coming to understand that all of the hard work we did in the 18 and one half years Andy was in school means nothing in the adult world.

The adult world of day programs is ALL about Medicaid regulations and bureaucracy and little about what a person with developmental disabilities really needs to become more competent and more productive in the everyday world.

I have had many people tell me “you need to start your own program!” If only it was that simple. There is such a teeny tiny amount of funding now for adults that to start a program is all but impossible unless you can get a millionaire benefactor to support the program. I know this for a fact because I know someone who has been working now for over 3 years to get an adult program up and running. I spoke with her the other day hoping that the program may be running in the next year. She told maybe two years if things go well! I also know she has a benefactor and is seeking more of the very wealthy (who are concerned) because to depend on the state or federal government programs leaves you so tied up in red tape that the end result is exactly what Andy has right now.

So on the first day of Autism Awareness month I got another rude awakening into what Andy’s future looks to be…

I wish it was just a cruel April Fools joke… but I have learned too much and I am starting to see the truth.

For those of you out there whose sons and daughters are in their teens I wish you well and hope and pray that their futures will not be as bleak as Andy’s looks to me right now.

For those of you who have children in late elementary school I suggested you start to advocate now for better funding for adult services. We all know how slowly change comes, especially when you are trying to change the status quo.

For all of these children who have been diagnosed with Autism, who are growing older every day and who will completely overload the very little that is available for adults, the future will not be any better, unless we start now.

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A week in the life OR Is it Friday Yet?

by janneane7 on 03/21/2008

I share this not to bemoan my life or to whine… My hope is that many of you will read this and think “YUP, this is my life” or that you will laugh out...

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I share this not to bemoan my life or to whine… My hope is that many of you will read this and think “YUP, this is my life” or that you will laugh out loud and say “oh yeah I had that week last week…” 
It is my hope though to at the very least make you laugh. Heck that’s what I do after a week like this!!!
What else can you do?
My essay is titled: A week in the life OR Is it Friday Yet? 
Woke up Monday with a splitting headache (possibly because I had to meet with people connected to Andy’s Adult program) and a seriously leaking bathroom sink… I cancel my meeting. I don’t need to deal with them when I am feeling like this. Then to make things a little more interesting, I fell down the cellar stairs. Thankfully I only twisted my ankle and bruised my leg. Later the plumber came and shut down the sink until he could fix it on Tuesday. Monday night, my husband fiddles with the kitchen sink for over an hour. In the process he shot water all over the kitchen, 3 times (the floor around the sink, has never looked so clean) and he broke the faucets!! Now we only have running water in the toilet and the bathtub. 
 
Tuesday: I wake up with another headache. I help Andy get ready and then take him to his crappy adult program. (It pains me every time I drop him off) then it’s off to work. After work the plumber came back! HOORAY! He fixed both sinks and we have water again. PHEW! Thankfully since we live upstairs from my Dad (and he owns the house) he covered the expense. As for Andy; the weather was crappy and his mentor is out of town… he is bored out of his skull!

Wednesday: I wake up and discover the toilet is running non stop. My husband says he’ll look at it tomorrow when he has the day off. This seems pretty simple, so we are just turning the toilet off and then on at the shut off until this gets settled. Work has been absolutely nuts with 5 new parents (of kids with ASD) calling me this week looking for help and resources.  I can’t catch up because we have a very important mailing out to get out. I hate fiddling with mailings when families need me, but this one is time sensitive and other families might loose out if this mailing doesn’t get right out. By noon my head is killing me. I head out at 2:00 to meet Andy at home. The weather continues to be a cold with wind, rain, and some snow… Andy continues to be bored out of his mind and doesn’t want to hear anything from me… Only two more days until Andy’s his mentor Carrie comes back. I cannot wait!

Thursday… I wake up at 2:30 a.m., my heart is absolutely pounding from a horrible nightmare where Andy and I were trying to run form a nuclear bomb. (Why can’t I have nice dreams with puppies and kittens? or even better me hitting the lottery?) I know I won’t be going back to sleep anytime soon. Finally though I drift off around 4:00 a.m. I wake at 8:00 and there is my constant companion, my headache. Well at least today is my day off. BIG fun today too because I’m off to the GYN… After my Dr. appt. I decide to go to work because even though it is my day off, I have SO MUCH to catch up on. A few hours later I come home to find that my husband has no idea how to fix the toilet. Time to call the plumber AGAIN. Is that my head pounding? Yes I think so… Andy comes in at 2:45 but we have to run right out to pick up my husband’s work truck from the garage, and I have to run Andy for a haircut. I’m glad to see that Andy is calm and happy. Thank God for small favors. Andy LOVES to see Becky, his cute 30 year old hair dresser who has been giving him buzz cuts for years. Andy walks in the door behind me, but I am not moving fast enough and he is impatient. He decides to push to get around me to get in and he bangs in to a 6 foot tall display of every kind of hair care product you can think of…. Hair spray, mousse, gel and shampoo go flying everywhere. I look up and see the place is packed. Of course everyone is looking at us. And no big surprise, the crashing of the hair care products and seeing Becky has someone else in her chair throws Andy off. Between being excited to see Becky and smacking into the display he is REALLY REVVED UP. My son who just moments ago was so calm and quiet, starts making VERY loud noises and JUMPING across the salon…oh delightful. 
I see that the women in the other salon chairs and those who are waiting look genuinely terrified. They pull quickly pull their feet in as my 6 feet 2 inches and 290 pounds loud son jumps full force across the 1, 2, 3, times across the room . I make a grab for him while trying to pick up the mess and tell him to “sit down!” I explain that Becky will be with him in a few minutes. Becky, who KNOWS Andy doesn’t do well waiting, has a client in her chair and God only knows when she’ll be done.  Andy sits for a few minutes making horribly loud noises and doing his best to look as autistic as possible. He is   waving his hand in front of his face while he grunts, growls and tics. SUDDENLY he leaps out of his chair again, and is jumping across the floor. As I get up to grab him again I feel my head pound and think “Oh I am having one big cocktail later!” The 2 woman sitting across from us in the waiting area are doing their best to try to ignore us. I on the other hand try to be light and up beat… “Oh Andy” I say, “why are you so revved up?” while thinking Becky PLEASE HURRY! Of course Andy leaps out of the chair yet again less than a minute later. Once again I grab him again and tell him to please sit down. We got through this scenario 2 or 3 more times, and then finally Becky calls him. She is ready.
While Andy gets his hair cut I have 5 minutes to bury my head in Ladies Home Journal. Then he is done; it’s time to head to the little meat market near my home, pick up something for dinner and then head home. My head is still throbbing…
In the back of my mind I hear that old commercial “Calgon take me away…” and I think at least tomorrow is Friday!

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Andy goes back to school...

by janneane7 on 11/19/2007

What a day we had last Thursday... I found myself with tears in my eyes one minute, and amazed and touched the next by how my Andrew thinks and how he...

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What a day we had last Thursday... I found myself with tears in my eyes one minute, and amazed and touched the next by how my Andrew thinks and how he is learning to cope during this challenging time in his life.

Those of you who have read my Disgusted and Disheartened essay know that my wonderful son Andrew "graduated" from school on his 22 birthday (per Mass law), 4 weeks ago. This has been a difficult time for both of us but it has been especially hard for him.

Imagine having teachers who are so kind, and respectful of you, who treat you so well and who truly love to be around you… Imagine having great fun with them, knowing they are your friends… Imagine them teaching you so many things… Imagine doing this for nearly 10 years… Then imagine one day you are told that it is ALL DONE FOREVER! Imagine the following Monday you go to a new place, with all strangers, where your regular daily schedule of fun and interesting activities is suddenly gone…This is what Andrew has faced in the last month and it has been so hard for him.

Andy’s teachers, our Autism Consultant and I all did our best by having him visit the “adult program” before he left school and by preparing him for his “graduation” using social stories. So far Andy has done better than I expected. He hasn’t had any severe meltdowns, but he is sad and he desperately misses his favorite teachers who he considered his “friends.”

Over the last month he gets in moods where he sits at the kitchen table or on his therapy ball and says “I want to go see Jim and Kevin’s school”, in a very plaintive tone of voice. If he says it once he says it a hundred times. I show him and tell him over and over that “you had your graduation honey, school is all done.” And I know he knows school is all done, but I also know that he is wishing and praying that it wasn’t so.

I knew a couple of years before he graduated that loosing these teachers who he absolutely adored was going to be hard on him. To help him adjust I planned to take him for a 40 minute visits during the last period of the school day, every two weeks during November. Then I would taper our visits back to once a month. I am hoping these visits will ease the loss for him. Two weeks ago was our first visit and I was so excited.

I picked Andy up early from the adult program and drove him the 25 miles back to his school. Andy was quiet on the ride, and as we got closer to school he shocked me by suddenly yelling, “No school!!” “No Kevin!!” (Kevin was his favorite teacher who played “Glove tennis ball” with him in the gym every single day after PE class.) I was so surprised that I wasn’t sure what to say. I couldn’t figure out why he wouldn’t want to see everyone. I thought for a moment and figured, I’ve driven all this way, and he’ll be glad once he gets in there, so I’ll twist his arm a bit to get him to go in.

Andy had been asking for a “bagel creamy cheese” earlier so I told him, we will go get a bagel creamy cheese AFTER you go see your friends. Andy was none too happy; in fact I could tell he was quite tense because he was stimming like crazy.

When we got to the school and I reminded Andy that we will get the bagel after he goes in to visit his friends. Andy is tense but gets out of the car and we walk to the building. Once inside we immediately run into Earle his PE teacher. Earle is thrilled! “ANDREW!!” he said as he reaches out to pat him on the back. Andy cringed, he was totally overwhelmed and then he pushed Earle, “MOVE AWAY PLEASE” Andy said. Earle was as surprised as I was earlier and I tried to make an excuse as to why Andy is so upset.

We tried to visit a couple of other teachers. Everyone was so excited to see him and they tried to ask me all kinds of questions about how he is doing, but I am busy trying to keep him calm. Finally Andy has had enough and he runs out of the building and into the peace and quiet of the car. I let him go because I know he needs some time to calm down.

I stayed behind to talk to Barbara one of Andy’s other very favorite teachers, and someone who I also feel very close too. She was deeply concerned about Andy’s reaction and I fill her in on his first two weeks at the Adult program. As I talked to her I was reminded of how much I miss all of them too. I drove Andy to school every day for 5 years and I popped in two or three mornings a week just to chat with whomever was around. If I miss them so much, I can’t even imagine how Andrew must feel. Just like on his “graduation day” my heart was breaking for him.

Over the next weeks I will think a lot about whether it is a good idea or not to bring Andy back in two weeks for another visit. I am seriously considering not taking him and waiting a full month. But since that first disastrous visit Andy would say many times daily, “You want to go see Jim and Kevin’s school!!” I knew he meant he wanted to quit this whole stupid adult program and to go back to school. It was hard to keep saying over and over to him, “you had your graduation sweetie, school is all done, but we can go and visit your friends for a little while.”

Finally visiting day comes. Jim’s photo on Andy’s calendar tells him this is the day we can visit. When Andy stated that morning “You want to go see Jim and Kevin’s school!!” I knew we had to try again. And, although some people had been questioning me, asking if it was a good idea to take him to visit again I KNEW Andy needed a second chance. Going back was the only way he would start to “get it.” To understand that he can’t go back to school, but he can go and visit his friends.

At 1:00 I pick Andy up from the adult program. He is in a WONDERFUL mood all smiles and so glad to see me. We hop in the car and head off. After a few minutes of driving and listening to Andy’s favorite Elvis Costello tape I say to him, “Remember where we are going today? We are going to visit your friends, Kevin and Jim and Barbara and Earle.” Andy looks at me without much of an expression, but he is calm… I’ll take calm. We ride the rest of the way to school with me saying occasionally, “it will be good to visit your friends” and “they will be so happy to see you.” I wonder what he is thinking.

We arrive at the school and park across the street. A couple of busses are there already even though dismissal isn’t for another 40 minutes. I look at Andy, “are you ready to see your friends” I ask. He doesn’t say anything but grabs his coat and backpack. “No” I tell him, “you can leave those in the car.” Andy looks at me and urgently says “bring your coat and backpack.” Ah ha, I think, I know what he is up to… he is going to do this just as if it were any other day and he was going to school. “Ok” I say and we head off towards the building.
 
On the way in I ask him, “Who do you want to see first, Jim or Barbara?” “Barbara” he tells me, but the second we get in the door he heads right up the hall to Jim’s room just like he did every morning for so many years.

As usual Andy is walking twice as fast as me, and I can see him heading for the coat hooks outside Jim’s room. I know Andy’s hook has now been taken over by another student, but Andy wouldn’t even be able to imagine that his hook will not be there waiting for him. His hook had been the second one over from the door and he is making a bee line for it. I see him move some other student’s coat and backpack from “his hook.” When I get there I convince him to put his coat on an empty hook, but suddenly he is getting upset. In a very urgent tone of voice he is saying over and over and over, “Kevin take you to the Y Pool!!!!” Andy went to the Y swimming on Thursday mornings for almost 10 years and today is Thursday. “Let’s go see Kevin”, I say.

We walk across the hall to Kevin’s classroom. Andy whose is already upset and overwhelmed covers his head with his arms as we walk in the door. Two of the boys who were in his home room jump from their seats when they see him. They whoop and cheer “LOOK, IT’S ANDREW HE IS BACK!!” And they crowd around Andy while all 6’ 2” of him clings to me with his arms covering his head. He is getting louder by the second. He yells “KEVIN TAKE YOU TO THE Y POOL !!!!!”  I put my face close to his as I try to calm him down and as I choke back tears at this very sweet and unexpected greeting from the boys.

Kevin comes over to direct the boys back to their seats and to say hello, but Andy is stuck. He cannot stop asking for Kevin and the Y Pool. Although Andy misses his teachers he also misses the wonderful and busy routine of school and most of all swimming at the Y. It was the highlight of his week. Andy is so upset that he can’t greet Kevin or answer a simple “how are you doing?”

I try to distract Andy but he is too upset. I can’t even answer Kevin’s questions about how he is doing in the new program. I decide it is time to see Jim! I tell Andy “Let’s go see Jim.” and for some reason, which I’ll discover in a minute, he suddenly lets the Y pool go and we go back across the hall to Jim’s room.

Jim’s door is closed and Andy stands there a moment just looking inside. 
I wonder what he is thinking and wish that he could tell me. I tell him, “Go ahead Andy, go see Jim” and at that moment Jim turns around, smiles and strides toward the door as Andy opens it. “Andy! It’s so good to see you! How are you?” Jim says as he reaches out his hand. Andy reaches out too, shakes Jim’s hand and says “hi Jim.” Then he is off. I am standing there holding his daily notebook, which he had insisted on taking out of his backpack. He turns to me and says “put the notebook on the desk!” before going to get his paper shredder, a small stack of paper, and the extension cord. This was Andy’s morning routine. He would shred papers for 15 minutes or so in the morning before he headed out to work, or to go to the Y for swim. Jim laughs as he watches him set up and says “well Andy, why don’t you just make your self at home.” It was at that moment that I knew that this was EXACTLY what Andy needed. He wanted to see his friends but he also desperately wanted his home room back, his routine back.

Jim and I sit down and we chat while Andy shreds. We talk about the new program and how Andy is handling all of the changes. We also discuss the Patriots, and the Celtics because that we would always talked sports when I dropped Andy off for school.

Andy shreds for about 10 or 15 minutes and then I tell him it’s time to go see Earle and Barbara. He sweetly says good bye to Jim and we head back down the hall towards the office. As we walk I look up at my sweet son to see that he is beaming from ear to ear. “Do you want to go see Barbara?” I ask. “Yes”, he says. I ask him, “are you going to give her a hug?” he smiles and says “yes.”

We go into the office and there is Barbara. She sees him and smiles. Andy walks over to her and Barbara throws her arms around him and gives him a huge hug. Andy is beaming. “How’s my big guy? How’s my big Ange?” she asks, but he doesn’t move or say a word, he is basking in her hug. After a moment she asks me how things are going. I can’t say too much in front of him because I am so unhappy with the program. I make the so so motion with my hand and tell her I’ll e-mail her.

Before we leave Andy has one last thing he has to do. He says “I want the soda machine please.” And I tell him go ahead. For the last two or three years Andy got a soda out of the machine in the teacher’s room at lunch time every day. One more part of his routine that is really misses.

As we are getting ready to leave we run into Earle. Andy gets another enthusiastic greeting and I take a moment to chat with him too. He wants to know how Andy is doing. He tells me how much he misses him. Andy is ready to go and we say our good-byes.

As Andy and I slowly make our way to the car I look at his face and he looks so happy, so at ease. I too have a huge smile on my face. “Wasn’t that great I ask? Wasn’t it fun to visit your friends at school?” Andy doesn’t say anything, he just continues to smile.

I think how wonderful it is that he is happy. I am thrilled he was able to do this today without running out of the building. I am proud that he is so smart that knew what he needed to feel better. For Andy it was more than just seeing his friends. He needed to bring his backpack in, to shred the papers, to get his soda.

When we get home he looks at me and says “Go see Jim and Kevin’s school?” this time it is without that sense of urgency in his voice. I tell him “Yes Andy we can go back to visit Kevin and Jim” and I am thinking I can’t wait to go back and visit again too.

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Disgusted Disheartened and Exhausted

by janneane7 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 i...

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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?

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