Wall St Jnl Article/Hard Choices About a Child's Special Needs/non DS

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April 27, 2008

Hard Choices About a Child's Special Needs

April 27, 2008

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.<REPRINT

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.

* * *

My daughter knows that big bright thing in the sky is the sun. But ask her

to say the word, and it comes out as nun. A day later, it might be lun, or

just un.

When she entered preschool last year, we enrolled her in a special-needs

speech program through the public-school district. But the once-a-week group

session showed few results. That led to private, weekly sessions earlier this

year with a therapist at our expense.

So, we've had to continue the private, weekly sessions. Since we've seen

progress there, we're now preparing to ramp up the therapy to three sessions a

week until the summer, at which point Amy plans to schedule as many as five

weekly sessions. " I want to give her the best opportunities we can afford in

battling this, " Amy says.

Our daughter wants so badly to be understood by her friends. She knows Mom

and Dad and her brother will take the time to listen to her more than once.

But she knows her peers don't. They ask her " what language do you speak? " and

that makes her sad -- and frustrated. I can see her growing increasingly

introverted at school.

Throwing money at her disability seems the only option at the moment. Still,

Amy and I know we can't continue funding this cost for a long time. At some

point, we're going to have ask if this is really something that money can

fix...or if this is simply who our daughter is.

• Jeff D. Opdyke covers personal finance for The Wall Street Journal.

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