On hard choices, or, real issues for real people

[Guest guest]

Hello,

From today's, April 28, 2008, issue of the Schafer Autism Report

By the way,

I don't blame people for not going with the full-nine-yards of ABA

given their situations. Realistically, perhaps, the question should

be, what options are there for the average person with a special-

needs situation where ABA is the intervention of choice? What ABA is

prescribed (recommended?) for people on a budget, (time and money)

considering charity or government processes (politics) not a worthy

(compatible) option (both having very little to do with ABA? " I'd "

say.. -)+

Are less intense than the optimum ABA programs worth doing may be

more to the point and how worth doing are they, if they are, ie.,

what should we expect of a proportionate if not " quantum " loss,

thereof? .. . [Who " can " afford to do the quantum loss thing?] How

effective is ABA relative to the intensity of intervention? Finally,

someone more pointedly asked " that " question? (very relevant

question?) is my sense of it.

I (especially) know all about the " individual " nature of things,

(being an Individual, myself. which could make anything moot, so

let's talk generalities here, as to the essence of, intelligent

discussion? To what " science " as we know it tends to be about in

coming to conclusions.

Anyway, here's the story (better articulated, for " many, " perhaps) in

that respect:

Hard Choices About a Child's Special Needs

In the Wall Street Journal. tinyurl.com/5ym9jo

On a recent drive home from a party, my wife, Amy, asked our

soon-to-be 5-year-old daughter who she had played with. With tears in

her eyes, our little girl responded that no one had played with her,

because, as she told Amy, " they don't understand me. "

That doesn't actually capture the real conversation. The words

my daughter used weren't nearly so precise. That's because she has a

speech disability that impairs her pronunciation. She understands

everything she hears, and she always has the appropriate response.

Her words, though, are often a challenge to understand.

Our daughter has been enrolled in speech therapy for awhile,

but her therapist now wants to triple the number of sessions, which

triples our expenses to nearly $1,000 a month, a big dent in our

wallet. Our insurance provider won't pay, so all of this is out of

our own pocket.

And that gets to the point of this week's column: the cost of a

special-needs child.

To be clear, I'm not implying money supersedes a child's needs.

I am saying, though, that 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?

* * *

I've read stories through the years of parents who quit their

jobs and throw their life's assets into research in the hopes of

finding a cure for their child's ailment. I applaud those parents;

I'd like to think Amy and I would do the same if either of our kids

faced a life-threatening issue.

I also know that we're lucky in that we do have resources to

throw at our problem. Many parents aren't so fortunate, and their

choices are more stark -- and painful -- than ours.

But at some point, most of us in this situation have to face

the fact that our resources are limited, especially when money

doesn't guarantee a quick cure, or perhaps even a cure at all.

" We started off in a state of siege, " my San Francisco friend,

, says of her experiences with her nearly 5-year-old son's mild

form of autism. " We were like, 'We'll throw everything we can at

this.' "

They have their son in four types of therapy, and a preschool

for children with special needs. Because the program only runs from

9:20 to 12:20, they've also had to hire a helper to get their son to

and from school. And because that program runs only two days per

week, they've had to fill the remaining time with private preschool.

As a result, the family has been shelling out about $40,000 a year to

deal with the disability.

" We borrowed money from my in-laws, and any incremental income

gains I've had for the last several years have been completely wiped

out, " says .

says that she and her husband originally expected they

would have to stretch themselves for the first few years, but that

after an appropriate amount of spending " he'd magically fall off the

autism fence. But that's obviously not the case. " Now, she says, " we

know we have to retire at some point, and we have to pay off our

debt. "

And so, she says, in the past six months she and her

husband " have begun to rethink what we're doing. Financially, it's

been horrific. Our son is doing terrific, so it's worth it, but we

can't sustain this level of expense anymore. We woke up one morning

and realized we can't live our life in siege mode. At some point, you

have to decide to move to that next phase, planning for the long

haul, " instead of hewing to the dream that a continuous flow of

dollars will quickly fix the flaw.

The upshot: and her husband are continuing therapy for

their son -- but they have chosen to send him to public kindergarten

rather than continue to incur the expense of private preschool. That

way, they can start to put more money into other priorities, such as

saving for his college education and planning for their retirement.

+ Read more: tinyurl.com/5ym9jo

End.

Remember the questions, of science, if there is science honest or

intelligent enough about that, as that? .. .

m.g.

On the facts, if not science, yet.. .