Hope Can Be Expensive
September 9, 2008 by Kristina Chew, PhD
Filed under Health
How to avoid being bankrupt by autism, is the topic of another NPR story on autism. We’ve skirted the bottom of our checking account on more than a few occasions; when we moved to the town my in-laws have been living in so Charlie could attend the autism program there in June of 2006, one reason we lived with them was because it was easier on our finances (though not on “family relations,” I guess you could say). One of the main reasons that there’s constant talk about “costs of autism” is because a lot of therapies, treatments, and schools, and more for autistic children come with a hefty price tag; the question is, of course, how do you what’s money well spent or not? Does any “result” justify handing over the dollars?
There have been some things, and even more than a few things, I’ve wished I hadn’t spent money on. I’ve dumped enough bottles of supplements, bought enough specialized educational products (some have been helpful, like the not-at-all-cheap Language Master; some have been gimmicks), written enough huge checks; on later reflection, I suspect that we in general and Charlie in particular, would have done as well without all that stuff. So many therapies sound so good at the start, but hope can be expensive.
One thing I’ve never regretted is having a bit of a “DIY”—-do it yourself—-mentality. The shiny flashcards on the educational websites look so nice and would be so quick to run a program with, but Charlie learned his first words from pictures cut out of books and magazines and catalogues and glued to index cards (now it’d be even easier to make these, thanks to the web’s endless store of images and a color printer). And Jim and I—-though very amateur autism/ABA therapist/teachers—got ourselves trained in ABA and crisis management early on, and the results have been long-lasting. We’ve tended to direct the better part of our money to the people who actually spend time and do things with Charlie, so it’s quite evident where it’s going.
So how do you economize without still doing the most and the best you can?
We struggle with these decisions all the time. Sometimes I feel like we have thrown money away on this or that, but it’s almost worth it to be relieved of the questions that plague me. It’s exciting to find something that helps and usually a relief to stop doing something that doesn’t help.
It seems that we don’t have any choice but to try different therapies and techniques, since what each child responds to is often quite different and there is a serious lack of definitive research into what works.
So many inspiring anecdotes, so little hard science…
Well, in our case it’s pretty easy b/c we don’t HAVE any money left to spend on things; if it’s not covered by MC right now then it doesn’t happen. That being said, we glean all kinds of ideas from other parents, fromNik’s therapists, and simply poking around in stores and online as we ask oursleves how we could make something or how we could use something creatively. It’s true what they say about necessity and invention…
Not having “much” (anything….) makes it easier, maybe——
We are a one-income family–having two autistic kids, so finding resources from my state and my local Arc–if you have one–every state is so different. But for us, I was able to enroll my kids in a division of a mass health plan for disabled children to pay for expensive therapies (both, speech and OT) for both my kids (for a monthly fee) and then found a fund for people who live on the South Shore of Boston (which I do)–it paid for my son’s social skills classes—which are pretty expensive…. so getting creative and asking question everywhere I went was key.
The 40 hours/week of intensive ABA was possible for Charlie because most of our therapists were college students and we paid them a shocking fraction of what an ABA therapist here in NJ can make today. And quite honestly, they were the best team of therapists we’ve ever had.
I’m not a parent, but a teacher, and I do home therapy as well. My inspiration for doing things on the cheap is the vocational teacher at my school. This woman makes great activities out of things you might otherwise trash. One week she had an activity she made using plastic water bottle caps, and this week, she brought something using plastic grocery bags. Now I’m looking around at things I have around the house wondering what I could turn it into.
Kristina,
Your advice about DIY is right on. When we discovered that Z was hyperlexic, Julie spent countless hours exploiting that to help him learn words. The speech therapist then hit on the great idea of labeling everything in the house, basically taking the idea of flash cards to the next level. I admit our house was an odd site when you came in, with index cards taped everywhere showing the words for the item, but it worked.
If you live near a university that trains SLPs and OT/PTs you can see if their clinics which are used to train students are available.
My younger son got language therapy at a university clinic fof $10/hour about 14 years ago.
Also, there is a special ed. preschool run by the university’s College of Education. It specializes in special education programs. For a while it focused on Down Syndrome, but now it focuses on autism. They provide speech and physical therapy, plus some interesting preschool programs (lately including “normal” children as a blended special ed/mainstream program).
Also, when my son was in preschool, none of his preschool classmates qualified for Extended School Year. One parent took it upon herself (well, as a way to get more services and some daycare for her child) to hire the student teacher from the preschool for the summer. THEN she offered spaces for a nominal price per week for the other classmates. So for a couple of weeks my son went to her house for a morning of what was a special ed. preschool with music, games and some therapy.
But still, we could not afford to buy a van to transport our family of five comfortably until my son “graduated” from private speech therapy when he was 12 years old. He did get free speech therapy between the ages of 4 and almost 8 years from a charitable organization (now called Rite Care), but they don’t work with kids much older than 7 or 9 years old.
We are very pleased with TeachTown which we learned about here.
We’ve bought lot’s of equipment to help our daughter communicate. These had not proven useful.
Another DIY “therapy” we pursued was a backyard trampoline. Unbelievable, huge return on investment. I can’t say that it has actually done anything about autism, but it has sure helped us all. A great stress relief for Z, not to mention some good exercise. (Although, we do have to remind him not to yell when he bounces late at night!)
We were on our way to buy a trampoline while living wit my in-laws (they have a huge backyard and frontyard, traversed only by the deer). Never got around to getting one and no place to put it in a condo parking lot, but maybe someday!
thankfully we only bought that mini trampoline because Alec hated it.. we were doing rotations of brushing, joint compression and trampolining, he loved the brushing and joint compression but hates the jumping.
I’m in Australia, Western Australia to be precise and the state runs an early intervention program from ages 3-6, Alec usually only had at most 4 hours a week and we would work with the therapists and get homework from them to do. We did private speech for 3 years, this was only covered to $300 and at $75 a session once a week it was hard but we did without and I would do it again because it was what he needed. I always stress over it, have we done enough, whet alse could we do but I think with the EI, speech and OT we made amazing progress
I had the incredible luck of having an older sister who is an OT, and who originally let us know that she saw signs in Casey before he was even 9 months old. So, I’ve taken advantage of a lot of her advice since she works with kids with Autism in her school system. Unfortunately, she lives a state away so that kinda is a bummer.
We also have tried many biomed things that never really helped as much as deep pressure, bike rides, swimming, the mini tramp and the big tramp, and just trying to keep him off the computer and tv as much as possible. I always kick myself for not taking him to outside therapies, but he does get some in school. Could he be doing better if I did alot more stuff? It’s always the burning question who’s answer seems so unobtainable.
Another one here with limited funds. In the early days, I used polaroids for flash cards. I think the kids could relate to see the actually item rather than a generic pic. Later, I used digital photos.
Sadly, we have to rely on the school to provide speech and OT.
In a way, having less money to spend has made it a little easier since there are fewer decisions to make.
“Could he be doing better if I did alot more stuff? It’s always the burning question who’s answer seems so unobtainable.”
as Bonnie wrote—–that’s why hope can get so expensive, no?
What is all of this nonsense about hope being expensive. Hope is free. Dreams are free. You can’t buy love and you can’t buy ….a cure. But you can teach your child to aspire, hope, dream, and strive to achieve their goals.
Every time I go to Disneyland with the kids I think about Walt Disney. In his 50’s, divorced, single dad with the kids on the weekend. He went bankrupt a few times in his 30’s and 40’s with ideas that didn’t make it. He never gave up however. His dream was to make a place where he and his child could both have a good time. “When you wish upon a start”.. as the song goes, and the rest is history.
Having false hope in a man made product, service, or pharma drug is not hope in my opinion, it’s wishful thinking. You don’t have to have a dream or wish to have wishful thinking, all you need is a few bucks to try your hand at fate. True hope in my opinion is the result of an inner, righteous desire that results in actions which can lead to success or “good luck” if you will. I’m a big fan of hope, faith, and wishing for good results because I know that when one sets their mind to something and announces their righteous desire to the world, doors open and things happen to bring forth good results.
I hope that parents of autistic kids don’t give up hope that their child’s life will continue to show improvement. Not from purchased products or services, but perhaps from living a natural lifestyle and “getting back to basics”. Nothing fancy. Nothing expensive. Just good food, air, water, exercise, and dreams for a better tomorrow.
@ air purifiers- kind of ironic that you speak of hope being free while you offer us the opportunity to help our children by spending money on your products, which we then “hope” will work. Thanks for illustrating Kristina’s point so effectively.
Air Purifiers:
Of course we do(have hope), that’s why we go to therapy so that our kids can achieve all that they can be … for instance, my daughter is non-verbal and she benefits for speech therapy and learning to use voice output devices so that she can be all that she can be… and happier and more confident and to achieve independence. And OT therapy has helped her manage her anxiety so that she feel more comfortable so that she can be all that she can be. We have all the hope in the world for our kids (that’s why we do what we can for them) and we want to help them where they need it most. Sometimes it’s not so black and white and simple.
My son has trouble relating to other kids, he hides when they come around, but social skills class have helped him overcome some of the shyness so that he can make friends—because I know he can, he just needs a little help and he appreciates it.
All parents have hope for their kids and help them where and when they need it. For some of us, it takes therapies to do it.
@air purifiers, unfortunately, it does seem that a “natural lifestyle” comes with costs!
The best expenditures that we ever made were
Good assessments
Professional assistance developing a progressive curricula.
Training for ourselves in how to teach, task analyze, motivation, and behavior management.
A good OT who really understood motor skill mechanics.
SLP-CCC evaluation and consultations.
We could not afford to have lots of direct service on a professional basis, so professional input was more on a consultation basis and we implemented the hands-on.
A computer, high-speed connection, printer and laminator (for some specific reasons).
Computer software for Eleanor.
“How to teach your child to read in 100 easy lessons”–Zig Engelmann (<$20).
The Kaufman praxis kits–pricey but paid off in ways that I did not originally anticipate–to say I was originally skeptical is putting it mildly.
The PECS manual.
Like everyone else, I imagine, there’s a lot of dead-ends , false starts and past brain-storms around the house and donated elsewhere, but the above are the things that I personally don’t have any regrets about paying for. Your mileage might vary.