My 15 year old son goes to a private day school for autistic kids, paid for by the school district we line in. This has three problems.
First, he is the highest functioning kid there, surrounded by everyone from nonverbals on up. Socially, he doesn’t have motivation to change his behaviors, as everyone he sees is acting out in some way. He needs to be around more neurotypical kids if he is to become a functioning adult, and time grows short.
Second, the current school is academically nil. He doesn’t have homework anymore, and what he used to get was what I would expect of someone half his grade level. There’s little science, no history, no languages. None of the other kids read for fun, so he’s stopped doing that. That hurts, to have a kid who doesn’t read.
Third, his behaviors at home have gotten to the point where he’s really hard to deal with daily. He was previously living full time at the school he now attends, and some of the behaviors were much better. We think he needs that full-time environment to grow.
Today we toured a school nearby that’s exactly what we want. Boarding school, excellent academic curriculum, unbelievable arts curriculum, constant oversight by trained adults with encouragement and peer support instead of clinical work, which has limited effect for him, heavy emphasis on personal responsibility while taking full part of a group, lots and lots of extracurricular stuff.
It’s amazing. I want this for him so badly! But it costs something on the order of five times a year what our combined income is. The school district would pay for the tuition part and transportation costs ought to be worked into it, but then we’re on our own for something like $60-70,000. The school offers no sliding scale or scholarships.
What do we do? If he stays where he is, we’ll go crazy, and he’ll stagnate, and I think we’re nearing the point where if we don’t make changes, he’ll be permanently dependent, and nobody wants that. I think he still has a chance. He’s smart and creative and friendly and deserves more from life. Are there private scholarship funds for this sort of thing, or grants we can apply for? There’s got to be some help out there. He needs this. We need this.
Thanks for any advice.
Start here?
I’m posting this less because I feel that I have something really constructive to add than because the OP asks important questions and deserves more response than has been given so far. This is an agonizingly difficult issue and I’m all too familiar with the vague encouragement, subject changing, and awkward silence that often follows questions like these. You need someone to get down to brass tacks with you and help you see the hard answers, but almost everyone will try to avoid that, especially the people whose job it explicitly is to do so. I wish I had more positive advice than I am going to give you, but I don’t, and I would rather give you bad news than be silent and let you feel like no one cares.
Simply put, most intensive autistic spectrum disorder education programs are aimed at rich people. If you are not rich, they will not be affordable to you. In my previous involvement with post-highschool ASD education one of the most striking phenomena I encountered was the financial largesse heaped on the average student attending the program: children of CEOs were common, students who were able to drive were provided absurd luxuries like new cars every year and in one case a student with Asperger’s Syndrome lived alone in a $200,000 house which he claimed he owned, given to him as a gift from his parents. Furthermore, I don’t feel that there’s a strong correlation between the price tag on a program and its long-term efficacy. Frugality is simply not a concern in the way these programs are administered; if their patients need to know how much they cost, they’re not expected to be able to afford them.
I have seen before parents in situations like yours who think that the right program is the silver bullet for their child’s issues, and spend many years focusing all their energy on a fruitless search for a comprehensive program within their price range, while the child continues to deteriorate in sub-par care because the parent won’t accept incremental solutions. Your story reminds me of these people, so I am going to warn you: Do Not Do This. You may have your heart set on the perfect environment that will induce a magical transformation in your child once you get them into it, and you may feel that any damage done keeping your child in the bad place where they are will be washed away once you have them in that perfect environment, so that it’s okay to put off getting them out of a bad place if it buys you time to find them a perfect place. If so, I am warning you: it will not work out that way. You are absolutely right to be concerned about your son’s timeline; in my experience, how early treatment is received is the single most important issue with regards to ASD treatment. Mediocre treatment now and later is much better than bad treatment now and great treatment later.
I think you’re also absolutely right to be concerned about your son being kept around students exclusively lower functioning than he is. In the program I had the most involvement with, it appeared to me that an overwhelming majority of the program’s effectiveness stemmed from the healthy social environment it had managed to create, and the interactions the students had with each other there on their own, rather than from any of the structured, administered care. While my experience with low functioning autistic children is limited, I would very strongly suspect that your son’s environment of being around exclusively lower-functioning students would have an equally strong negative effect, not only in how he interacts with other students, but in how he is treated by staff and in how he perceives himself. Please get him out of that program as soon as possible.
Realistically, short of discovering the perfect program with the perfect price, I would suggest homeschooling. I know that homeschooling represents a massive time commitment, and arranging one’s life to allow it can be extremely difficult, but it is the only way to get personalized care for your son now, rather than later.
I have seen homeschooling be very effective in raising an apparently low-functioning Asperger’s Syndrome child up into appearing to have no overt misbehaviors whatsoever. Though, this homeschooling situation definitely benefited from the child having a non-ASD younger sibling who he was homeschooled along with, and the family attending a church whose congregation included many families with children, and which placed a heavy emphasis on family and children’s programs. Both of these facts went a long way toward giving the child a safe environment in which to be socialized. The child in question, as of his mid teens, was still extremely emotionally dependent on his mother as well, exhibiting a need to call her on the phone throughout the day when separated, but otherwise being remarkably well adjusted considering his history.
I wish I could offer you more than this. I’m sorry that I can’t.
Right, your son may just be imitating what he considers to be normal behavior. There was a TV movie made in the early 70s (one of those ABC Movie of the Week deals) that dealt with a child who was placed in a residential institution for retarded children, despite the fact that he had normal intelligence. By the time he was a young adult, he acted exactly like a retarded child, right down to the odd speech and behavioral mannerisms. He thought that was how people acted, and he responded accordingly.
So, I did some searching for relevant articles, and I found a piece that was a far better fit to what I was trying to communicate that I had dared hope to expect:
This woman does an outstanding job of describing the issues in question, and the available solutions. I want to emphasize a point that she makes well but more subtly than I would: you cannot trust the people in charge of administering your child’s care to determine the efficacy of their care. It is far too great of a conflict of interest. When there is a bad fit, you must decide it for yourself, over the caretaker’s objections, and then you must take steps yourself to ensure the care improves, or pull your child out, rather than waiting for the caretaker to decide to change on their own. Inertia is not on your side.
Since the OP is looking for advice, let’s move this to IMHO.
Colibri
General Questions Moderator
I wasn’t looking for advice, I was looking for help with finding money. But I guess if there isn’t any, then advice will have to do.
This is the only school he’s been in that’s made any difference at all. I don’t know where else to put him. Homeschooling makes him home MORE, which we can’t deal with anymore. I hate to say this, but he needs more than we can give.
Assuming that the additional money is for boarding, can he attend as a day student?
Are you eligible/have you looked into respite care for the time he is/would be home on the weekends?
Have you looked for any other placement that would fall somewhere between what you have now and this school? I know there are not a wide range of options.
You are in a tough situation. I think your instincts are correct regarding his need for appropriate peer role models. Is there any way to bring him back to his district school or are there not adequate services for his needs?
Are there any integrated activity programs in your community where he could interact with same-age peers?
Funding is a difficult issue. If the school itself doesn’t provide any scholarships or sliding fees, I think you will have a difficult time finding alternative resources, especially where this is a private facility.
The Children’s Scholarship Fund, which offers k-8 scholarships, has a page of links to other funding sources, broken down by state:
http://www.scholarshipfund.org/drupal1/otherresources
Autism support Network also has a list:
http://www.autismsupportnetwork.com/resources/autism-grants-united-states
I just don’t see how or why anyone would give you $60k+ a year to improve your child’s education on top of what the school is paying. I wish you the best of luck, but ultimately you are asking for funds for what many will (right or wrong) see as a luxury good.
More than you can give in terms of training or expertise, or more than you WANT to give in terms of sacrifice and work? I can’t really speak to the difficulties of your situation, but I would personally do whatever I had to in order to improve my kid’s life. Few people are born with the strength and patience to take care of family members with disabilities, but people do it everyday. I am sure it is not easy, but given your options, maybe you need to figure out a way to make homeschooling work if his education is as important to you as you say it is.
Um, wow.
First, as I posted, the extra money isn’t for the educational part, which is covered, but for the rest- the therapy, immersive socialization, and other supports which he needs.
Second, wow, why didn’t I realize I was a lazy-ass parent who wasn’t willing to do what it took to help their kid. Obviously if I just sucked it up, I would suddenly become able to devote my entire life 24/7 to a child who I have to hide knives from because I’m afraid that when I piss him off by setting reasonable limits, he might attack me this time. Living with a kid who’s increasingly out of control is clearly a much better option than sending him to a place that’s set up to help kids with just his issues, and who have a track record of turning kids who are even worse into functioning adults. How silly of me not to have figured this out.
but thank you, everyone else who has posted. I’m really at the end of my rope here. We will keep looking for an option, because when he’s in control, he’s got so much to offer the world, and I want to make sure he has that chance.
I have nothing to offer but my empathy. I have friends with troubled kids, that they love very much and would do anything to help, but are in over their heads with the type of they need.
I really wish you the best.
This may be a stupid question, but have you applied for SSDI?
Information on SSDI for Children with Disabilities
Also, I wouldn’t assume (unless you’ve already looked into it) that grant programs for autistic children would automatically exclude enrichment and support.
You were still looking for advice in how to find money. 
Sorry I can’t be of much help. My only experience is with the public school facilities, and then only the early stuff.
If your child is violent, you should see about getting him institutionalized. No, that won’t help cure him. There won’t be immersive therapies and special schooling. But on the other hand, he won’t kill you, like some violent autistic children do. He’s fifteen. It’s already too late for early intervention programs. OTOH, finding him a decent residential program and lining up the state payment structure can take years. There are often waiting lists for the better facilities.
If you feel that you’re in danger, trust that fear and call the police. Your needs are no less important than his needs. If you can ease him into the system now it would be better than waiting until he hurts or kills someone. Now, you can make your own choices. If you wait too long, the choices will be made for you. Talk to social services in your area and see what they can do to start the process.
Not every autistic person is violent, of course, but the ones who are need to be taken seriously. The situation must be approached rationally, not emotionally. It’s a honest to God tragedy, of course. It’s unfair and it’s heartbreaking. But doing the best for him means stopping him before he does something irrevocable.
The Sky Walker case -
I didn’t say your child did or didn’t NEED anything. I don’t know you or your kid. The point is that there are generally not resources available to give every kid who NEEDS probably over $100k worth of care that much money.
Did I say you were lazy? Why so defensive?
So how much of your time and energy are you willing to dedicate to your child?
It’s more a matter of resources you don’t seem to have, or are not able to get. What are you realistic options here? Do you honestly think holding out hope that someone is gonna give you tens of thousands of dollars every year is a viable option? Maybe it is, and if you can find someone to do that, more power to you. I don’t think you are lazy or a bad parent. I have nothing but empathy for your situation, but I do think it’s probably one you yourself are going to have to solve with resources at your disposal currently.
Feel free to ignore the last post. My apologies if you felt was was criticizing you. That was not my intent. Good luck with the search.
My next door neighbor has an autistic son who’s around the OP son’s age. I don’t know the details, but because of his size and the possibility that he could physically hurt my neighbor and/or his younger sister during a tantrum (of which he had many when he was younger – I could hear him clearly anywhere in my house), he was taken out of the SPED public school program nd put into some kind of residential program. I have no idea where it’s located or anything about it. He visits every weekend. He still has tantrums, but they’re far and few between now.
My neighbor was very reluctant to put him in the residential program at first, thinking that his social skills would deteriorate. It doesn’t seem to be the case. Like I said, I don’t know anything about it, but my gut feeling is that the son must be one of the more high-functioning students there and maybe sets the example?
brickbacon, you have totally fucked up your quoting in your second-to-last post. You’ve put shit from Just Asking Questions into this thread, that were actually posts from a totally different thread…
I dunno how you did it, but you might want to get a mod to fix up your fuckup mate.
