A bit premature, but I'm totally afraid my son will fall between the cracks.

Discussion in 'Parent Emeritus' started by MidwestMom, Nov 28, 2009.

  1. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Ok, so L. is only sixteen, but that's 1 1/2 years from 18, and he's a sophomore, so he does have two and a half years before he graduates high school. I was wondering how to plan for his adult years NOW so that we don't fall between the cracks. I'd like L. to go to a two year tech college, which is like a junior college in most states, but...how sad is this?...I'm afraid that if he goes, even with a lot of supports and his IEP, he will not get SSI.

    My son is a sweet, naive Aspie-type child who was once in a CD class (cognitive delays more due to his social delays than his IQ...it's in the normal range). He is now in labeled Learning Disability (LD) and mainstreamed and getting good grades with minimal supports. However, his case manager at school and me and hub see very clearly that his ability to maintain in school is not going to help him in the world because he will likely have trouble with a mainstream job and certainly with living alone unless somebody checks in on him. And at 53 and 56, we can't live forever. And his sibs don't understand how needy he is. They think because he can talk well and he gets good grades, he will be ok.

    Is there a certain good way to prepare for the adulthood of a child like this? Should he be in therapy, even though he is fairly happy and doesn't really need it, but would it help that he's getting therapy for the Aspergers? I can certainly do this.

    I think he'll need SSI to supplement his income. I'm sure he can get a local job if they are aware of his special needs, but not a job that will pay the piper without help. And I soooooooooooooo worry about him living alone one day unless he has a worker checking in with him to make sure things are going ok.

    Any thoughts from the trenches or is this sort of out of the arena because he has Aspergers rather than a mental illness? All help is greatly appreciated.
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    MWM....this is a real problem.

    Take my son Billy who in reality was never diagnosed with Aspergers but I have no doubt he would have been had I even have known it was a disorder when he was young enough for me to have had him diagnosed. By the time I had heard of it, he was an adult and he had no insurance so he couldnt go to get diagnosed. He is so clearly Aspergers it isnt funny.

    He is able now to work at this job with Radio Shack but it took him till 2 years ago to get it. He only worked one other job before that and it was a clerk at 7/11. He only worked there for like 8 months I think?

    He works part-time for Radio Shack but I think he could work full-time if they would put him on but I dont know for sure. He just learned to drive in July of this year. He had way too much anxiety before that. His social skills arent very good though his sales skills are very good for some odd reason. Maybe its because he is selling something he is very knowledgeable about.

    I dont know how well he would do at living on his own. I think he would do fine as far as money but life skills...ahhh...not so well. He is a mess. Cleaning and cooking arent his thing. If he cant get a full time job, he is sunk, and he doesnt have the social skills to get that full time job. He happened upon this retail job and he is stuck there because he cant find another job. He wont even stand up to them to demand full time hours. He is too easy on them by letting them use him. I would have stood up for myself long ago but he just says yes to whatever they want. He has never missed a day or said no whenever they called him in to work on a day off. Naw...I wouldnt make it so easy on them if they wouldnt make me full time.
  3. mstang67chic

    mstang67chic Going Green

    I would start checking into programs in your area. He has an official diagnosis of Aspie correct? If so, that's a good thing. There are a lot of programs out there where he can either live in a group home (although it sounds like he's too high funtioning for that) or have an apartment either alone or with a roomie or two, but still have supports in place including people who check in with him and/or help with finances.

    If you start now, yes you may be way ahead of the game but at the same time, there may be an application process or waiting list. This way you can see what's out there, what he would qualify for and see what he/you need to do to get him signed up. Some programs may even have something for him now that will help transition when he hits 18. These are the types of thing I would have loved to get my difficult child into but it requires cooperation and involvement on his part and apparently that's too much to ask. :slap:
  4. Suz

    Suz (the future) MRS. GERE

    MWM, when I was working at a local high school there was a woman in the Special Education department whose job was in "transitioning" the kids from high school to whatever their next step would be- college or the working world or both. I would start with his school first to see if there is someone on staff who can help you (and him) decide next steps.

    This is also a good time to contact MHMR to see if there are Independent Living Programs available in your area. I know I talk about this a lot but it's a godsend for those young adults who need some assistance but are making progress along the road to adulthood. If there's a waiting list, this might be the perfect time to put his name on the list.

    Another thought is to contact your nearest chapter of the Autism Society for ideas and support.

  5. susiestar

    susiestar Roll With It

    I understand your worries so well. Talk to the high school about transition services. Then go to Dept of Human Services and ask about transition services through them, and about transitional living programs. These are programs to help L learn to handle this stuff.

    Go to Social Security and ask them these questions. You won't be the first person to ask. You can also call if you don't want to use the mail.

    You are very right to be worrying about this now. You also want to look for the dept of rehabilitation services or vocational services. Some places allow high school students to go into a trade/tech area of study and have an extra year of high school. Wiz is doing it and loves it. Our state offers a 13th year to students who are willing to work and want to do the full trade/tech program. It is totally free. Wiz actually could do 1 more year because he skipped a grade, but he doesn't need it.

    If the local level tells you no, go to the state level. They should have some answers.
  6. ML

    ML Guest

    I will be watching closely your journey. Manster has some similarities with L. I'm not ready to give up hope that in the next few years he will learn tons of skills and make leaps and bounds with establishing the necessary pathways to some day survive on his own without help. I'm just not ready to take on that worry. First I will tackle middle school which is the year after next. That's as far into the future that I can manage and still hold on to my sanity. Hugs.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Thanks, all. I will start asking questions.

    Yeah, I also hoped Lucas could live on his own. And I'm sure he can (he is alone often while I'm gone and can cook, bathe himself, change and wash his clothes, keep his room clean, and soon he will drive.) The problem is, he is too naive and trusting and isolationist. That isn't something that can be taught. He has no cynicism in him and likes to be alone. I am concerned.
  8. ML

    ML Guest

    Can you send L to stay with us for a while? The keeping the room thing clean. WOW, how did you ever accomplish that? That is huge. I need to get teaching that one AND the washing clothes.

    I have this idea of some day having my own boarding house for kids who need a little extra help. We could start our own family :) Manster likes to cook but hates to clean so L is welcome to live with us.


  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Maybe we can do it together...hehe. I didn't really do anything. He likes to eat, but not what I cook (he's picky) so he cooks. I only do one meal. He likes his room to be "just so." Everything in it's place. It's my easy child daughter I have to bug to clean her room, not L. After he learned to speak and got services, he no longer acted out. That's not because of us. That's because he is basically good natured, but was frustrated. I'm "iffy" on whether he can learn to, say, pay rent.

    LOL, we ought to put L. and Manster in a nice apartment together. I am terrified to think of L. in an apartment by himself. Anyone could take advantage of him. Also, when he is home, all he wants to do is play videogames and watch television. I'm the one who sort of forces him to do other things. :tongue:
  10. trinityroyal

    trinityroyal Well-Known Member

    MWM, I too think that you're wise to start looking into programs now.

    We have had good success so far (fingers crossed) with the adult Assisted Living facility in which our difficult child resides. He just turned 20, but he's so helpless that his psychiatrist predicts he would be homeless in a week and dead in 2 if he were living on his own. The Residential Treatment Center (RTC) provides 24/7 supervision, they teach life skills, vocational and academic skills etc.

    difficult child has a volunteer job at a local seniors' home, where he works in the gift shop. The idea behind the placement was not just to give him job skills and experience, but also to try and teach him the value of money. To him, $6 or $600, it's all the same...$600 for that pack of gum? Okay. So, this is a critical skill for his survival in the world. His 1:1 staff accompanies him to work, and helps him while he's on the job.

    L sounds like he's more grounded in reality than my difficult child, so he may be fine on his own, with some supports in place. If he has a roommate, or perhaps someone to check in on him, he might be just fine. A lot of maturing happens between 16 and adulthood, so if you start working on it now, he may very well be ready by the time it's time.

    PM me if you'd like more information about the specific programs and supports at difficult child's Residential Treatment Center (RTC). Some of them are the sort that you could possibly set up on your own.

  11. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Billy would be fine if he had a roommate to share the rent. And someone who would bug him to keep things cleaned up. Billy is great with money and a stickler for knowing that bills are due and when. Of course, it helps that he is a gadget guy and keeps it all on the computer. Billy wants to work.

    My mom was his biggest hindrance. She didnt want him to work. Menial jobs were beneath him. She also didnt teach him any chores. When he came back to me, he didnt know how to cook or do laundry. We had to teach him from scratch. His brothers had been doing those things for years. Now he is good at laundry and getting better at fixing meals. He still isnt good at fixing meals but he wont starve.
  12. JJJ

    JJJ Active Member


    If the school has not created a transition plan for him yet (with you and him), they are 2 years BEHIND! This should have been addressed at the IEP meeting when he was 14. They can do supported employment, etc. If he is going to need supported housing, you may need to get him on a waiting list now.

    For Kanga, we are working on her IEP right now and she is going to get a job with a job coach starting when she turns 16. We will also delay graduation by at least a year, maybe more so that she stays in the school support system longer. It will also give us the chance to transition her from Youth Mental Health to Adult Mental Health and have her SSI approved before the school cuts her loose. I think that overlap of services will be crucial to ensure they do not fall through the cracks.
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Well, we have a minor transition plan, but the real stuff kicks into gear next year, when he is a junior. Then he can work and get credit at school and I really want that. The problem with my son is that nobody knows what he'll be able to do and we can't really make solid plans until we do know. He's quite the puzzle. Lots of kids like him fall between the cracks and I don't want that to happen to him. I am determined to fight for him, but I'm not sure what to fight for yet. I'm not sure what he can do.

    I do worry a lot that he may not get SS. I think he will need it even though I know he'll work someplace. It won't be a high paying job.