First of all, can I get a woo? Why, thank you.
One of the parts of Schuyler's Monster that has gotten the most attention has been the notorious "Chapter Seven", which has become a sort of shorthand between Julie and myself. ("What's going on with them?" "I think they're having a Chapter Seven moment." "Oh, shit, that's no good...") The Fox reporter from Houston who came to see us a few weeks ago, Greg Groogan, did a piece this morning about the issue:
Raising Autistic Children Making Marriages Difficult
His story on Schuyler should run at the end of the week.
The title scared me!
ReplyDeleteMy first thought was that Rob had gone all rock star and spent his millions of dollars of book revenue on cocaine and was going into chapter 7 bankruptcy!
Wow, you're in some pretty august company! WOO! And a Woo-Hoo, too! :-)
ReplyDeleteBTW, did I ever send you the picture I took of the book at my local store (in Dover, DE) under the heading "Staff Favorites?" It was very cool to see. :-)
Congrats, Rob, and a big Woo-Hoo.
ReplyDeleteI've been reading you for a long time and always knew you'd (finally) amount to something. ;)
You can have two woos
ReplyDeletewoo woo!
I always knew you'd amount to something some day.
Yes, you can definitely get a WOO! from me. (That was actually my first reaction when I saw the link). Congrats!
ReplyDeleteWow!!! WOO!!!
ReplyDeleteCheck out this article about special needs and parents decisions. Kind of hit home for me. How are you doing at the accepting where you guys are at? When do we make the choice to live in what we know, instead of expecting to win the battle and become the all elusive "normal"?
ReplyDeleteApril 27, 2008
LOVE & MONEY
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.
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, Susan, 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 Susan.
Susan 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: Susan 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. Email: lovemoney@wsj.com1.