Now He Has It, Now He Doesn’t

Further Adventures in Apraxia 

I had an interesting conversation with Noah’s speech therapist this week.

A little background:  I suspected the reason for Noah’s speech delay (he’s delayed even compared to other children with Down syndrome) was apraxia.  He has all the symptoms and his speech history is classic for apraxia.  When he started speech therapy in June of last year, I shared my suspicions with the therapist who explained to me that it was likely Noah’s speech delay was likely just due to Down syndrome issues and also due to the fact that he hadn’t been in speech therapy since he was 3.  (We kept him out of speech therapy because he was 100% nonverbal and was not so much as babbling.  He was learning sign language at home, and there didn’t seem to be any need for therapy at that time.)

Anyway, after his speech therapist had been working with him for five months, she started using the term apraxia, so I asked her if she saw it now.  She said she was seeing apraxia characteristics, although she didn’t say for sure that she was diagnosing him with apraxia.  I know there is a whole controversy out there about whether children with Down syndrome even have apraxia, so I didn’t push it, and when I asked her to go ahead and put it in her file so that it was part of his therapeutic history, she said she would.  Upon my request, she also stepped up the use of the Kaufman apraxia cards.

Fast forward to a few weeks ago when I told her I wanted his apraxia to be treated with an apraxia-program, specifically the Kaufman protocol.  It would require her to watch a 4-hour training DVD and between that and an instruction manual, it would be about $250.  She said she’d be willing to do the training, and she thought the center would pay for it.

So last week I asked where we were that and she told me, “It’s not going to happen.”  The center wants her to make do with what they already have because there’s just not enough of a demand for an apraxia-specific program.  It’s not a common disorder.  Then she followed that up with saying that she’s not entirely comfortable with diagnosing Noah with apraxia because she thinks his language delay is due to his cognitive function, coordination, and other Down syndrome issues.  And then the deadly, “These kids just do things in their own time.  Everybody is different.”   She’s willing to do a Kaufman assistant (they have the forms already), but she doesn’t have the book for scoring, and she says it’s too much trouble to score anyway.

Hmmm.  So if you have a typical child who is not talking by age 18 months while all his typical peers are talking, you search for a cause; but if you have a child with Down syndrome who is not talking by age 5 when all his Down syndrome peers are talking by age 3-4 years, you blame it on “these kids just do things in their own time.”

So this is exactly the treatment that the apraxia experts warn parents and therapists about, saying if the apraxia does not get treated with specific apraxia therapy because the therapists are unprepared to diagnose or to treat, the apraxia-related issues will not improve.   It is imperitive that people with apraxia get treatment for apraxia.

What now?

I figure between insurance and co-pays, we have payed this center $1,000.  Noah needs what he needs, and I don’t think it’s asking too much for them to purchase the materials for appropriate therapy for him.  And the therapist doesn’t seem to argue that the material may be appropriate for him, she just doesn’t think it’s as important as I do.

I see three optionns.

1.   I could get the DVD training and manual myself.  We could probably come up with the money in a few months, and I don’t mind doing the training and follow-up.  I get stuck with, “But I shouldn’t have to.”  This is not a school situation, this is a private therapist.  I’m paying them to give him the best treatment available, so I should not be having to buy materials to cover what they won’t do.

2.  I could search for a new speech therapist who is experienced in apraxia and has the training, which his speech therapist has actually suggested I do.  Drawbacks – current speech therapy is only 15 minutes away, the next closest place is about an hour away.  And even if I took him to an expert, it is possible they may also be resistent to diagnosing a child with Down syndrome with apraxia.  It is only recently that those dual diagnoses have been made and the experts have admitted there is a difference between some children with Down syndrome that can be attributed to apraxia.

3.  I can do nothing.  Noah can continue going to his current speech therapist, who, by the way, has a great rapport with him and is doing very good work with him in other areas.  I can compensate for some of the apraxia treatment at home by doing drill and mirror work.

I’m not sure what to do.  It would take weeks for him to get used to a new therapist, and adding in a weekly appointment that would add 2 hours travel plus 45 minutes therapy would throw our homeschool schedule for a loop.

Any suggestions?

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4 thoughts on “Now He Has It, Now He Doesn’t”

  1. Gosh, you’ve really got a dilemma. I wonder if there’s such a thing as a registry that lists professionals and their areas of expertise with DS children. How about getting in touch with the fellow at UT you listened to? It’s possible he could find out even if he didn’t directly know. I wonder if it’s even possible to make a definitive diagnosis. The more you let people know what you need, the more likely it is that you’ll get it.

    Your time problem is critical. Throwing your home schooling for a loop is not an option for you. HS’g your children is too important.

    If you don’t have the time resources to take Noah a great distance for Kaufman, you don’t have a therapist who’s invested in this type of therapy, you have a program that’s not a million dollars, I think you’re left with doing the Kaufman protocol on your own…or donating it to the therapy center (yes, I’d be grumbling too). Even then, your therapist might not invest fully. There’d have to be an agreement beforehand that your donation would be fully implemented.

    There’s also your own time factor to consider. How much time will it add to your teaching schedule with Noah? You mention the current therapist and Noah have a good rapport. Is he more apt to respond to Kaufman drills with her as the teacher? You say sometimes he resists you. Add the Alyson factor to this. YOU are very important in the equation.

    1. Actually, to do the Kaufman Protocol at home would take less than 15 minutes a day at this point. We are already implementing a small portion of it, but I really need the background instruction to maximize its potential. I’ll get this figured out, I just need to come up with a resolution I won’t be angry about.

      Love ya,
      Alyson

  2. Alyson, my heart goes out to you. You are such a lovely, caring Mom! May the LORD continually bless you and give you strength.

    I would go for option 1. Yes, you shouldn’t have to and since you are paying the therapist a lot of money… However, you know your children best and there is none other that could do such an awesome job – no matter how many diplomas, hours of study, etc.

    Alyson, you and your precious family are in my prayers.

    Blessings,
    Mirjam

    1. Thank you for such kind words. I am leaning towards option one, and my mom suggested that if I buy the stuff, maybe I could get the therapist to agree to use it along with me. It shouldn’t have to be that way, but it is what it is, and it’s time to do the next right thing for where we are.

      Blessings to you, Mirjam.

      Alyson

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