The Open Wallet Policy
On Sunday I wrote about hope starting with acceptance and asked:
Does one strive to do everything one can to cure, heal, recover a child from autism with the goal of the child “losing“her or his diagnosis? Or, does one learn to accept that one’s child is different, disabled, autistic?
In Sunday’s Wall Street Journal, Jeff D. Opdyke, whose five-year-old daughter has (like my son) a speech disability which impairs her pronunciation, wrote about the costs of raising a special needs child and the hard choices that one finds oneself having to make:
….parents at some point do begin to think about the dollars. You have to: With limited resources you can’t pursue an open-wallet policy forever when you have so many other needs that ultimately must to be funded, too.
How, though, do you make that call? Do you pump every dime you can into fixing a child’s disability? Or do you rein in the spending at some point and accept that this is your child, and you love her just as she is?
When does a parent know when to stop having the “open-wallet policy” about spending on treatments for a child’s disability? (The Special Children blog also considers this question.)
I’m wondering if the notion of “fixing” one’s child disability is presuming too much. Can you “fix” “the ADHD” out of a child or, for that matter, “the autism”?
If one’s disabled child is doing something that is dangerous and/or has a serious medical condition—head-banging in the case of my son—there is something very specific that needs to be addressed and until recently (as in last month), a very hefty bill came in the mail for Charlie’s home ABA therapy. Yes, the head-banging had to stop (it has); had to be “fixed” in the sense of being controlled, and the cost of addressing this paled beside the price of a child who self-injured.
I know I’ll always be paying something for Charlie. Hopefully he will get a job but it won’t be the sort that rakes in the big bucks.
As Charlie has gotten older I have found myself having more and more conversations with more and more parents of older, adult children, and sometimes they just shake their heads at the mention of this and that “new treatment.” They make it clear, be wary of practitioners bearing hope in a jar—the proverbial “quick fix”—and watch the bottom line, because there’s much still to pay for as a child grows into an adult.
Sure it is scary for the parent of a two-year-old to hear that he has (as we were told when Charlie was being diagnosed) a “serious” and a “lifelong” and a “neurological disorder.” That made it sound to me that Charlie would always be as he was at two years old, however tall and strong he grew. “Lifelong” means “lifelong”—but a child with a disability becomes an adult with a disability and maybe this is not what all families experience, but my son has changed immensely even in the past year. His understanding has increased substantially and his speech, while often blurred and slurred and bearing other traces of apraxia, can be so clear that one just wants to sit and listen.
Yes, it’s a cliché, but just to hear Charlie ask for the “brown crackers” and to tell me the name of which of two grocery stores he wanted to visit for our weekly shopping, is priceless. Charlie’s disability is far from “fixed” but you can be sure, anything borrowed and spent to help him is being paid back little by little, and in full.
Tags: asd, asperger, autism, business, children, Diagnosis, Education, Health, Insurance, Money, Parenting, pdd-nos, wall street journal, wallet
16 opinions for The Open Wallet Policy
Autismville
Apr 29, 2008 at 11:57 am
I don’t see it as “fixing.” More like equipping … enabling. Doing what I can to help. The reality is I do that for both my kids, the one that has autism and the one who doesn’t.
As their crazy mom, it’s the difficult process of holding them tight and letting them go, all at the same time… I can’t begin to predict a timetable. I just pray for wisdom as I face each day.
Estee
Apr 29, 2008 at 12:48 pm
I am AA. Accept and assist — it’s different than trying to normalize.
Had an interesting conversation with a gentleman last night ADHD — he was terrible in school, told he couldn’t DO anything. Today, he is a VERY successful man and an MBA. He was saying how his ADHD enabled him to focus differently and learn differently.
And that’s how Adam learns too. He will tell us all very soon how he is able to see the world even with his challenges and how he adapted, learned to cope, and how he learned.
As far as curing, well, I have another surgery coming up for cancer. I am mighty sick of people talking about curing autism when I am determined to live to 90. Autism and cancer are completely different things. And no matter who tries to continue to be negative towards Autistic people are important to me — my son is autistic.
Leila
Apr 29, 2008 at 1:03 pm
Estee, I hope you’ll get a full recovery. That’s really tough.
Kristina, I remember hearing Charlie say “piggyback Daddy” very clearly that time we met. It was very cute. I was also impressed with him when my son yanked a toy off his hand and Charlie was totally cool with it.
Bonnie
Apr 29, 2008 at 1:37 pm
We went through a phase of spending a lot of money on biomed stuff, that never really seemed to make a difference in the grand scheme of things. As in your case, and as mentioned in several blogs of Autistic adults I have read, time and growth together have seemed to work more wonders than any supplement or diet. And while with growth comes more challenges (puberty-yikes), I have to say that my boy amazes me everyday, and although we don’t spend tons of money anymore and work with him on our own and hope for the best, we know from past experience that he will hopefully continue to get better with age! Like a fine wine!
Annie
Apr 29, 2008 at 2:55 pm
We’ve never had an open-wallet policy — our pockets just aren’t that deep. What I struggle with more is on the order of an “open-self” policy. Between learning, advocating, putting various interventions into practice, coordinating therapies & paperwork… it’s not too hard to imagine giving myself full-time to my daughter’s advancement and still perhaps feeling that I wasn’t doing enough. But I have enough remnants of sanity to realize it wouldn’t be a healthy approach, either for me or the rest of my family, any more than an open-wallet policy that would sink us into ridiculous debt.
Balance. So important, and so elusive!
Niksmom
Apr 29, 2008 at 3:09 pm
Ah, so true what Annie writes! Funny, I’ve been having an email exchange with another mom who is going through horrible angst and guilt b/c her neighbor is telling her she should quit her job and focus on her son (who is only 3) so he can “graduate” from autism like HER child did. ARGH, it makes me crazy.
We haven’t done anything significantly different with Nik over the past nine months (he does get PT/OT/Speech but he’s always gotten that) expect provide him with exposure, opportunities, love, and attention…and he’s making remarkable progress. And it’s not costing us anything outrageous. He is who he is and all we can do is provide a loving, stable home…not something one can do when one is flat broke!
Karen
Apr 29, 2008 at 3:46 pm
Nodding my head in agreement. Pete has made HUGE strides this past year (he’s in 1st grade) because he’s in the right SDC and we’ve found the right combination of services for him. We have conversations now! It’s awesome!!!! I find the more I “accept and assist” and the more I see others around Pete doing the same (I have a pretty awesome extended family and group of friends), the more he progresses.
Regan
Apr 29, 2008 at 3:49 pm
Here’s the problem in this whole thing of evidenced and empirical, and does it all need to be provided professionally or is parent training of some aspects as effective and more cost-effective?
When Eleanor was 2, I was clueless about how to deal with much of this and the professionals were helpful and reassuring, and I needed that. As time went on however, I learned more about autism, more about what to do, and more about Eleanor. Not every piece of professional advice, no matter the cost, represented “improvement”, and some of the fly-by-the-seat-of-the-pants stuff that hubby and I came up with, based on a knowledge of our daughter, did. So for us there is a crossover point, to do what we can do and to consult with the people who do know, when we don’t. I suspect that there are similarities to many other families. I also suspect that if it is really going like a house on fire that people stay the course, and when it isn’t, you sit down and think about what to do.
Interesting about older parents. I have a somewhat dated issue of JASH, saying exactly the same thing. That parents of young children are stoked for cure, and the older parents who were once those young parents are taking a much more pragmatic view of the situation. I wonder if it will be the same 10 or 20 years from now.
Beth
Apr 29, 2008 at 3:58 pm
Same with my son, Nicholas. He is now almost 9 and just had his 3 year evaluation for continuation of services. I look back at who he was 3 years ago and it amazes me (and everyone else who knew him then) just how well he is developing. This is with an appropriate (in his case, partial inclusion) educational program and services though the school.
If I had spent tens of thousands of dollars on “recovering” him, the only difference would be that we would be tens of thousands of dollars in debt and we would have no family activities or quality of life.
ariane
Apr 29, 2008 at 4:59 pm
While I think there is plenty to do for a child who lacks the skills to communicate and socialize, the public school systems are often not doing enough on their end. It is a two-way street. Yes, these children need additional support but, there must be more understanding and accommodating in our classrooms. We are technically paying for the education of our children through our tax dollars so why do parents have to resort to hiring lawyers to fight the system when the system should accommodate them??
Bonnie Sayers
Apr 29, 2008 at 7:56 pm
I read your latest article first and included the link to this story in WSJ. Should have read this one first. Anyway just yesterday someone sent me an email saying they just got dx of PDD-NOS for three year old and she wanted to know if her son would be able to play sports someday. I replied that it is really up to the child and their interest. I explained that Nick is HFA and 13 and has no interest in sports. I could not push it on him and a few years ago when we had the family friends volunteer each Sunday for two hours thru a jewish org she would share about sports and her siblings, but the interest is not there. It is for animals though. A neighbor keeps wanting to take my son to a dodger game. Yeah he looks normal and is just about in most ways, but he would not be interested in that and would sit there being clueless and probably talk about dinosaurs. I do not find that helpful at all putting my child into that kind of awkward social situation.
Just earlier this afternoon we picked up Matt and his class and several others were on playground. They were practicing dances for friday celebration of cinco de mayo. My son was screaming and just not into it. I was watching his body posture and he was hunched over and the aide and then teacher made him stand there with his hands behind his back. It was very hard to watch and my son Nick was not happy that all the others on playground were watching and many turned to look at us knowing we were his family.
I asked the aide when this festival is and then said my son would not be coming to school that day. I asked him if he noticed my sons body language and I expressed how I did not like him having to place his hands behind his back. He said all the kids do that. Well it is not in his behavior support plan and I wish I had a camera in my purse to take a photo.
My son does not need to be put through that for some festival of some event our family does not care about. I wanted to go grab my kid and get him off the playground and I also felt like crying. My son Nick just the other day said how much he liked the new male aide and today he said he did not like him for seeing what he did to his brother and my son does not want to go anymore to pick up his sibling.
Bonnie Sayers
Apr 29, 2008 at 7:59 pm
I agree about something dangerous is different. Matthew used to eat tree bark, paint chips and head bang. We changed his diet somewhat and put him on a med. I would not change things just to get eye contact or force the issue like I read many other parents do.
Kristina Chew, PhD
Apr 29, 2008 at 8:30 pm
For years stuck by our policy of “pay the people who actually spend time with Charlie”—-teachers and therapists. Then we found ourselves hiring a lawyer in 2005 when things were not working out with the school district—–and then we moved. I guess some would see that as “giving up” but our current town provides so much more for Charlie.
And no paying a lawyer now (well, not yet).
Melody
Apr 29, 2008 at 11:49 pm
Bonnie Sayers:
When I was about 11, we had to dance with all the boys, including the guy who tried to strangle me in third grade. I was reluctant, but they made us, and when it got to the rotation where I had to hold his hands, he dug his nails into my hands, and I had to step on his foot and push him to get away, and I ran to the wall where the teacher was and said “he hurt - dug his nails in my hand”. I had to sit out and write sentences the rest of the time.
Melody
Apr 29, 2008 at 11:50 pm
My family never was able to have an “open wallet policy” even if they’d sought one. All the money went to rent, gas, and food. Now it all goes to rent, gas, food, and college.
Daisy
Apr 30, 2008 at 8:43 pm
Our out-of-pocket expenses are not in search of a cure: they’re used to provide adaptive materials that Amigo needs, like Braille books.
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