Makes Me Want To Scream, Part Two

I interviewed a woman – let’s call her Ms. A. -- with an early intervention provider in New York recently. Her center provides free speech, physical, occupational and other therapies to children under three for those who qualify.

Let’s talk about what it means to “qualify.”

I’ve known, from my own experiences and from talking to my fellow speech-moms, that plenty of children in need of therapy are not given free services because they don’t “qualify.” It doesn’t mean the child doesn’t have a speech or language problem that requires therapy. But because the early intervention system has far more kids than it can ever serve, and too few therapists, their criteria for determining eligibility is more stringent than what a private therapist may use to determine if a child requires services.

Here’s what Ms. A. explained to me: to qualify for free services in New York, a child needs to be delayed by two standard deviations below the mean in one area of development, such as speech, or one-and-a-half standard deviations below the mean in two areas, for example, speech and gross motor skills.

Ms. A: New York used to allow services for a child with a two standard deviation delay in expressive language but was on target for receptive language. Now they don’t.

Me: So basically any kid with apraxia wouldn’t be given services?

Ms. A: That’s right.

If Ms. A. wasn’t as nice as she was, and just as indignant as I had become, I might have started smashing the phone into my desk.

Here’s what you should know about apraxia – one of the key characteristics of this neurological disorder is that there is a big discrepancy between a child’s receptive language, what he understands, and his expressive language, his ability to express himself verbally. It’s not like a child who has a simple delay and will eventually get up to speed. A kid with apraxia will not learn to talk without intensive speech therapy.

And it seems – for those families unable to afford private therapy – without moving out of New York first.

From Just a Few Words...to a Whole Book

It goes without saying that the best thing about having two children in speech therapy is seeing their progress. From watching Max go from a child so frustrated he would smash his head against a wall to a first grader with a vocabulary that reflects far more than his six years. From listening to Ari count before she could speak -- “uh, ooh, eee, awr” – to having her pre-k teacher tell us she’s ready to learn how to read.

The other good thing about having kids with speech problems? Being able to help other parents who are going through the same experience. I’ve always done that on a small scale – recommending speech and OT facilities, encouraging parents to push for more services from the school, helping with letters to insurance companies. But now I have the opportunity to help far more people.

With a book.

I’m thrilled to share that I’ve been given the opportunity to write a book on speech and language disorders for a major publisher. It will be what’s known as a prescriptive book – a how-to for parents who suspect, or have been told, that their child has a speech problem. I’ve been immersed in the world of speech disorders for close to four years now, so needless to say I feel very passionate about this project.

I’ll be working on the book for the next year or so, and I’ll be looking to talk with both families and speech professionals who can share their experiences with me. If you would be interested in talking with me, or know someone else who might, please contact me at debbiefeit@yahoo.com.

One Flu Over The Cuckoo's Nest

I wasn’t coming from a rational place. I admit that.

I had made the appointment for Ari to get a flu shot weeks in advance. Although her asthma is mild – no daily medication, just a week or two on the nebulizer each winter – I knew a flu shot was the smart thing.

That was the plan. And then, I started reading about thimerosal.

Now this wasn’t the first time I’ve read about the preservative that many feel causes autism. In the special needs community, this is pretty old news. And I always thought I knew where I stood on the matter.

Until now.

All these years, my opinion was in line with the many experts who have shown no link between thimerosal and autism. But my mind wasn’t focusing on that just now.

Although the shot was for Ari, my mind was focusing on Max.
My mind was focusing on my bright, playful, affectionate -- and neurologically atypical -- son.
My mind was focusing on the year we spent trying to get a correct diagnosis.
My mind was focusing – perhaps a bit too much – on one surreal day last year when one psychiatrist told us (incorrectly) that Max was on the autistic spectrum.
My mind was focusing on rages, acts of destruction, defiancy, inflexibility and mood shifts.

Ari is everything Max is not: cheerful, predictable, agreeable, flexible.

Easy.

The thought of that changing – no matter how unlikely -- was devastating to me.

I knew it was best for Ari’s health to have a flu shot. But I wasn’t sure what it was going to do to my nerves.

So I started making phone calls. I knew there was a flu shot without thimerosal. The trick was finding it. I started with my pediatrician who was giving out flu shots, but only the kind with the preservative. Next I tried my own allergist. No luck. I made three unproductive calls to various arms of my local health department.

I knew this search was like looking for a syringe in a haystack. If I couldn’t find a doctor who had the thimerosal-free shot, I’d start with the company that made it. I figured they would know who in my area had the shot. I thought I was being clever. But the woman at the manufacturer said she couldn’t reveal any customer lists.

I was exasperated at this point. How in the world were the parents who wanted this shot supposed to find the doctors who had it? An even better question – why didn’t more doctors – all doctors – have the preservative-free version?

I pulled out the yellow pages and started calling pediatric allergists. No one had what I wanted. Except for my final call. This office had the version I was looking for. “But we have to save them for our own patients,” the nurse said.

I wasn’t sure how crazy I was willing to make myself over this. Did I have a right to feel so threatened by thimerosal? It’s not like I had the experience other parents have had of seeing developmental changes in their child after a vaccination. But our experience of seeking a correct diagnosis and trying to manage the behaviors of a difficult child has left me feeling vulnerable.

I talked it over with Dave and in the end we decided to pass on the flu shot for Ari. Yes, her asthma puts her at greater risk of illness and I’m sure her pediatrician would prefer she gets one. I also realize that in her four years she’s already been exposed to thimerosal from other vaccinations. I know it’s not rational. But it’s the only decision I can live with.