Wednesday, November 2, 2016

The gigantic question hanging over my head about his future


Last month, our district liaison told me that we could start looking at high schools for Max in January. No, I said, I wanted to begin in the fall, to give myself enough time. And so I jumped right in.

We only have a handful of options to choose from, so the time and effort involved in doing visits and intakes is not that consuming. But already I'm realizing how hard the decision is going to be, and it has been weighing on my mind.

Max needs a good academic program that works for his learning style. He needs good physical, speech and occupational therapies, along with a school that embraces augmentative communication since Max's clearest means of communicating is with his iPad speech app. He needs to grow his life skills. He needs all of that. But most of all, he needs to be in a school that truly sees the potential of its students, and holds them to realistic yet high expectations.

Some of these schools, which go up to age 21, have job programs for students. Graduates have gone on to work in company caf├ęs, cleaning tables. They bag groceries at supermarkets. They tidy up clothing stores. That kind of work is gainful employment for many. But it is not the work I envisioned a child of mine doing, and it's hard to wrap my head around it. Years ago, as I sat in the Whole Foods food court, I watched a woman with Down syndrome cleaning tables and it distressed me to think that could be Max's future.

Those feelings are surging in force and keeping me up at night. If we send Max to a certain kind of school, are we fating him to that sort of work?

I am going to look at public schools, too. Having Max around typically developing peers could be tremendous for his growth. It would also enable him to leave the special needs hothouse he has been living in—and flourishing in, to be sure, but it is a rarified environment.

If I want Max to someday exist in the real world, which I do, it seems like that should start in high school. But is there one that can fulfill Max's many needs? This week, our district social worker let me know that one of the public schools I was interested in has concerns about Max having a typical high-school day, which is their model.

I haven't felt this scared about Max's future since he was a baby, and we didn't know whether he would walk or talk, what sort of cognitive impairment he might have, or anything about what the future hold. But now I have answers. He has his challenges, but he is bright and oh-so-social and capable and abled and full of potential. And I desperately want to find a school that will help him be his best self...and more.

29 comments:

  1. My son has different issues but agree high school is scary. My son is in a public school with a start up program. It is not all I hoped it would be. Still working hard to modify things. Public high school staff sometimes have challenges communicating.

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    1. Ah, I can imagine the challenges—but it's so good that a program was there for him. It is not so common. The truth, I am realizing, is that there is no perfect place. But the more I see, the better my understanding of what's best for him.

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  2. I totally get this. I don't suppose these schools would consider some kind of inclusion (if that would work for Max?) i.e. One day in mainstream a week the rest in a more special needs environment? X

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    1. That is an interesting thought! I am not yet sure how programs work in mainstream high schools.

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  3. My son started kindergarten in August and although it is a small t transition, it was still a little stressful. You are a great advocate and I'm sure things will work out. Putting out positive energy that Max ends up in the perfect place for him!

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    1. It's all relative—transitions are challening, no matter what. I hope he has settled in and is doing well. Thank you for the good vibes!

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  4. I was in your shoes last year. I had to decide between an academic curriculum with no support or a job-training based curriculum with support. My son is bright. Wiping down tables or folding towels at the hospital will not be fulfilling. But what other options are there? The opportunities seem to be slimming as he gets older. Very scary.

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    1. What did you go with, Anna? It seems so wrong that sometimes it is an either/or choice. Our children deserve to have it ALL. I hope that as awareness and acceptance increase, more people will be open to hiring our boys. My confidence as an advocate for Max has grown as he has, and I always tell myself that even if the ops aren't there, I will find a way. You know, like we always find a way, right?

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  5. Thank you for this; the sword hanging over all parents' head when loving a challenged child child. No easy answer. Sharing on Pinterest and my Parents Are People Too Facebook page.

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  6. I wish I could give you the answers. I was in that position with my autistic son twelve years ago. He had his issues but was a B-C student in a mainstream class. Because it is what middle class people do here, we sent him to Catholic high school, which turned out to be awful. We never worked so hard for D's and after two years we were done, and moved him to the public high school. I don't know if I should have pushed for more vocational training but I didn't see how wiping tables in the cafeteria or picking up trash on the school grounds would be more important to his future than real academic classes. He graduated at 19 wi th a regular diploma and an ACT score that meant no remedial classes at teh community college. However, he didn't want to go to school any more. It took several years to find him a job. He works for the catering company at the local sports arena. The pay is $10.50/hr but at best he gets 30 hrs a week and during the summer when there are few events he has a lot of weeks he doesn't work at all. I just don't know how to get him to take the next step toward a job that will support him and all the government aid for finding work stopped when he got this job and won't come back unless he looses it.

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    1. R, does he enjoy his work? I hope more opportunities open up. I struggle with exactly what you say: academia vs. vocational training, and hope to find a place that believes both are important, and that students have potential to make advances in both areas.

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  7. My son also starts high school next year. I will not allow him to clean the high school until all of the students help clean the high school! And he won't be going on any CBI trips - where the C has turn from Community to Career. All they do is clean. Like I told the school board - he needs to learn how to use the community before he cleans the community.

    A program that you can look into for the future is Project Search http://www.projectsearch.us/ It is a nation wide program. We have it in my school district. I don't know if it will be a fit for Luke or not. But I know, even with the autism, and being non-verbal he is capable of more than sheltered workshop work.

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    1. AMEN JANET. So interesting you mention Project Search, a wonderful educator I met last week told me about it too. I looked up up and it seems amazing.

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  8. I will pray that Max ends up in the best high school for him. It must be scary. The future is scary. It's so hard to plan for.

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    1. Thanks, Kathryn. I know that we can always switch schools if things don't work out, but I'd really love to find The One now, if possible.

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  9. Whatever you are, be a good one. That's all I can say.

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  10. Kind of a random thought but his first job does t necessarily have to be what he does for the rest of his life. He will gain work skills and find out what he like and is good at and move on to his next job, perhaps due to the people he will meet along he way.

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    1. That is wise perspective—thanks for that, Anon. You are so right. My first job was shelving library books.

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  11. You've tapped into so many of my own fears and concerns. My son is just starting middle school but already, I'm looking to the path ahead. He's always been in public school, mainstream with pull-out classes and it's got its pros/cons. As the academics get harder for him, I'm constantly worried that the public school no longer "fits" and will also be looking into alternatives as high school approaches. Thanks for sharing this part of your journey Ellen.

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    1. And thanks for sharing right back. Wrestling with the worry is hard, but it is comforting to hear from other parents—and thought-provoking, too.

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  12. Oh I just want to jump through the computer screen and give you a huge hug. We're still in the baby stage with our daughter, but as I read your post, and your thoughts, and desires, I can't help but get teary eyed for you. These are all such big decisions, and I'm sure we all worry about what the world holds for our little ones. I'm interested in what you said about looking into public school options, because for us here in Georgia, public school is our only option, unless we want to shell out 30k/yr for a private school for special needs children, which we don't have. Are other options do you have where you live?

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    1. correction: What other options do you have where you live?

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    2. Our district has paid to send Max to a private school, because they couldn't accommodate his needs. Our choices are basically more private schools, or public schools with programs. Paige, who knows what new choices might exist when your daughter is old! And there are lots of us who will have gone before you. I hope, ultimately, our journeys give you hope. Heck, I hope our journeys give US hope, too. :)

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  13. Hi Ellen,
    Is a public, vocational high school an option for him? In MA, these schools are regional establishments that pull students from surrounding towns. Students who choose this type of HS education alternate one week academics, one week in 'shop'--which includes everything from web design to biotechnology to plumbing. My mother taught at one for 20+ years, and many of her kids went on to college, and not just into the "trade" they had trained for. I think this is a great option for so many kids, especially with the cost of 4 yr colleges so ridiculously high.

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    1. I have never heard of that option—that sounds really cool. I am going to ask around! Thank you so much. I hope your suggestion helps others, too.

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    2. FYI this is the HS in my district, maybe they call it something different in NJ?? (we call it Vocational HS here in MA)
      http://minuteman.org/

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  14. I think inclusion is best though it might be hard because he has not had it before. I hope u can find something. Also do not stress about life skills right now. He can get a certificate and then spend til 22. I do not have life skills but I have a BA. Plus their are college programs for students with intellectual disabilities. Look at Think College.net

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    1. AZ, thank you for that bit of inspiration! You're awesome.

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Thanks for sharing!



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