Thursday, July 27, 2006

speech therapy (and why does it piss everyone off?)

So, my youngest daughter has a speech problem. Hers is called developmental apraxia (sometimes called dyspraxia), which means an inability to control the movements of the mouth needed to produce speech. Stroke victims also often have apraxia. Thankfully this can be treated by professional speech therapists, who can work with the child (or stroke patient, but I'll limit myself to children ) to train the child to make sounds reliably.

Lucy's apraxia was very severe. She was basically incomprehensible to anyone other than Iris and me. Her preschool teachers and other kids understood about zero (yes, zero) of what she said. She "telegraphed", speaking in as few words as possible, and relied heavily upon body language and facial expressions. She would go to extremes to avoid speaking to anyone other than me and Iris. Even Anton understood less than half of what she had to say. This began to affect her personality after she started nursery school, and she became silent and sad. "I can't talk", she said tearfully to me.

We had her thoroughly evaluated by an excellent speech therapist, who ranked Lucy in most ways as being in the 2nd percentile in speech for her age. At over 3, she was below the average 18 month-old in verbal abilities. She even had difficulty doing things like sticking her tongue between her teeth, her apraxia was so severe. However, at the same time, her vocabulary (shown in her ability to recognize spoken words, albeit not say them herself) was way above her age, and she was obviously a bright little girl.

Now here comes the part which pisses everyone off: Immediately we started Lucy in private speech therapy twice a week. This is not covered by our insurance (it would be if she'd had a stroke), so we are paying out of pocket. We did not request an evaluation and services from the local school district.

Are we fabulously wealthy? No, we are not. Anton took a second job to pay for this, also we made budget cutbacks (no vacation this year, no curtains for our room, put off replacing the roof, etc.., etc..). As Anton said, "This is the biggest problem we have right now, so it's what we need to throw money at. What's more important?"

I never expected putting Lucy into speech therapy to piss everyone off. It continually surprises me. I have had so many people lecture me that the right thing to do is to call the school district, have Lucy tested, get an IEP written, and then let the school district treat her for free. Evidently Anton and I are just morons is the implication. But more than that, there's anger at us. Now, I understood that when it came from someone who is getting free school district-provided speech therapy for her own child; she is bound to have conflicting feelings. (By the way, I don't run around bragging, "Oh, my child gets the finest in everything, including speech therapy! Nothing is too good for my darling!" It comes up in conversation, as her speech issues are a huge part of our family's life, sad to say). But why would a person with a child with no speech issues get mad? Or a childless person?

The other night, a friend-of-a-friend got a little heated in discussing this. I explained that what my child needed (one-on-one intervention, multiple sessions a week) was more than what I could get from the school district (group speech therapy, most likely once a week). She insisted that "you can get whatever you want. They have to do exactly as you tell them!" Umm, actually I did look into this, and it turns out that if you believe your child's IEP is not good enough, you generally have to file a lawsuit and slug it out in court. I knew a family who did that. Also, I know a special ed teacher who used to create IEP's for my school district who told me that she got into trouble for creating too ambitious IEP's. She was admonished not to suggest too many services. And I did check and discover that the official policy for children my child's age is group speech therapy, not one-on-one speech therapy.

Additionally, there is a pheonomenon called "generalization." That means that apraxic children must not only learn how to make sounds; they must learn how to use those sounds in a variety of words and situations. A child we know for a long time was only able to say words correctly if someone was holding a flashcard up to her; she could not generalize and pronounce that word in conversation. Part of "generalization" is that if a child takes speech therapy in a clinical office, she may not be able to reproduce what she learns in other atmospheres. It has been shown that children who receive speech therapy in the home (where so much of their lives unfold) have much better ability to generalize, so the speech therapy tends to be more effective. I brought this up in the debate with the friend's friend, and although she took the point, she was still irked. That didn't seem a good enough reason to opt out, for her.

The school district where we live is in a state of continual financial emergency. Schools are being closed each year. Teachers are going out on strike. Services are being trimmed. Why shouldn't people be happy that we, who can, opt out of requiring expensive, specialist services? Why is it better that we burden the district by demanding extensive, expensive services (and by suing to get them)?

Anyhow, the difference Lucy has made in six months of extensive speech therapy is amazing. Her therapist says that she has never had a patient make such astronomical progress.

But the thing that makes me almost happier is that she's not so ashamed of her speech any more. She's feeling a lot better about how she talks.

Recently we spent the day hanging out with one of her friends from preschool, and Lucy tends to mispronounce this little girl's name. The girl, tactfully enough for her age, brought up how "a lot of kids can't say my name right." L. got the subtext (that she wasn't saying the name right) and said, with confidence, "Jill comes all the time to teach me, and I practice every night in bed, and soon I will be talking really really good!" She told her friend that she would work on her name in speech therapy. I was so happy that she wasn't shutting up in shame, like she always used to.

Now: I understand about 98% of what she says, and even new people (especially parents, who are used to talking to little kids) can understand most of what she says. Every now and then she stumps me (today I had a lot of trouble figuring out the word "sneaker"), but the sheer fluidity of her speech and the confident way she trots out new words makes tears come into my eyes.
Today in speech therapy, she worked on words ending in "ish", on pronouncing c/k without sticking an l in there (and her speech therapist taught me a touch cue to show her not to put an l in: speak k and then hold your own tongue down with an index finger), and on the name "Louise."

Her speech problem was wrecking her natural, sunny personality. The first speech therapist, who evaluated Lucy, was so worried about her that she contacted our preschool director to express her concern that we might not have her problem treated intensively enough (that speech therapist had a 6+ month waiting list for her practice and could not treat Lucy personally). By hiring a great pediatric speech therapist who works with Lucy one-on-one, we've changed Lucy's life. Why should that piss everyone off?


Susan said...

You are doing the right thing! Michael is also in speech therapy. He has low tone oral motor issues. Basically his mouth and jaw muscles are not as strong as they should be. Right now since he is under 3, we are getting great services for free. But once he turns 3, it goes to the school system. We went for his preliminary eval, and I was totally NOT impressed. And it's taking forever for the secondary eval, not to mention an IEP! So we are looking in other directions. We can stay on with his current SLP and pay out of pocket (insurance doesn't cover it). And we're getting him evaluated at the local Scottish Rite speech center. Kind of throwing ourselves in to everything so we can figure out what will be best for him going forward.

It's great to hear you all have seen such improvement!

Freewheel said...

Kudos to your daughter on her hard work and "astronomical progress."

Green said...

You know, I still remember the first time I met Lucy and you (and Iris). I remember that I didn't notice for the first hour or so that Lucy didn't speak actual words, outloud. I was blown away by how good a job she did at communicating without the actual words. I remember thinking she must be really smart, to be able to do that. In about two years, I wonder if she'll be a natural in a drama class - if it'd feel like tapping into a comfortable part of her old self, to act things out, because she feels like it, not because it's her only way of communicating.

I grew up with parents who believed that when it comes to health, you spare no expense. My parents made mistakes in the treatment they procurred for me, but it had nothing to do with being swayed at the idea of saving money.

Perhaps the people who get angry at you are people who feel you are judging THEM for their decision to get the less intensive help for their own children.

BTW, may I suggest something? Perhaps Lucy should get an IEP with the school and receive speech therapy in group settings for a little while. But only IN ADDITION to continuing with her private, at home therapy. Maybe it'd give her a boost of confidence to be around other kids who also have a hard time with sounds, and she'd have something to measure herself against.

P.S. When I lived in FL, I got invited to a longlost relative's house for Passover. Her daughter was there, along with the 3 grandchildren, one of whom was a cute 6 year old. The kid said something about someone, and I asked who it was, thinking it was another longlost relative. "My speech therapist." I asked why she had a speech therapist. "Because I can't say all my words the right way." Without thinking, I blurted "I hadn't noticed; ya sound fine to me" and turned to listen to what her 8 year old brother wanted to tell me. Two years later I met her again, in NY, with her mother. She ran full force into me and gave me a huge hug that literally almost knocked me over backwards. I looked at her mother, who reminded me of that conversation, saying Maya was totally high after I told her I hadn't noticed her speech problem.

Lucy's never spoken out loud to me (I haven't seen her in a year, before she started therapy). But I can't wait to talk with her.

Anonymous said...

I hate to say it (especially considering that some of these folks could be mutual friends) but - your friends are acting like complete asses to be judging you and making comments like that. It isn't for them to judge, for one thing. How annoying!

Anonymous said...

And furthermore, I also think you are doing the right thing - giving your daughter the best care possible. For this, you should be praised to the high heavens, not criticized. Hmmmph!

Anonymous said...

I guess it's okay to pay for expensive music lessons, or a math tutor or ridiculously overpriced clothes that the kids will grow out of right away. But something that definitely affects your daughter's life?

I applaud you for doing the right thing, C. It sounds like your priorities are exactly in order!

Anne said...

Don't listen to them. My son also has problem. Not so much in pronousing, but in knowing what word to use. His is receptive and expressive. We have him in both with the school and private. Sometimes I think the schools is a waste of time. They have it in the hall of the school (my son is also ADHD) and with a group. The only individual I can get is what I take him to. Don't stop. The earlier you treat it the better.