Therapy Thoughts--Opinions, Research, and Conflicts of Interest

Last year around this time, we were told in no uncertain terms that Spencer would not be able to make "great progress" in his speech development unless we enrolled him in a specific "day treatment" center. The director of this center was the one making the recommendation.  She had spent in total ten or fifteen minutes around Spencer.  This announcement came after months of his therapists assuring me that he was doing great in therapy, that an increase in his minutes would not be helpful or necessary, and that he did not need any sort of supplemental or additional treatment in their opinion (he had two different SLP's in the first four months at this therapy center).

To make this all the more odd, the only factor that changed during this time was that Spencer became eligible for funding that would pay the tuition for day treatment services in full.  I hoped that was not a factor in this new, seemingly spontaneous piece of "advice" from the center's director; but I could never be sure.  The director was very transparent with me in saying that they now, suddenly had two spots they needed to fill in the class where she believed he would be a good fit.  She went on to tell me he would be a leader in this class and that would be good for him (in a myriad of ways).  And that we had to act now while these spots were still open.

This same director could not be bothered to reply to my questions via email for over a month and also would not return my phone calls for weeks at a time.  She actually never did answer any of my emailed questions via email, nor did she ever converse with me on the phone.  This, after giving me two different phone numbers of hers and her email address and telling me to call or email her any time with questions.

We ultimately left this therapy center I'd been told was "the place for apraxia treatment," where he'd been for nine months, because I couldn't send Spencer somewhere for therapy where he and I were so undervalued as to be completely ignored for over a month because the director was "too busy."  Her job was to communicate with me and do the best thing for Spencer.  She also had his speech therapist tell me that the changes the director and I agreed needed to be made in Spencer's speech therapy sessions would actually not be made at any time in the forseable future, again, because she just didn't know when she'd have time to help his therapist implement those (exceedingly simple) changes.  This after two months of me patiently waiting for her to find room in her schedule to spend a total of ten or so minutes with Spencer's therapist.  That cowardly delivered announcement sealed the deal.  They were too busy to do what the director herself agreed was the best thing for Spencer--at the place where their whole existence is allegedly dedicated to helping kids like Spencer.

But just because they weren't awesome, I didn't want to write off their "expert" advice about what Spencer needed to help him make "great progress" (their words) with his speech and to mitigate future academic struggles (their alleged concern).  Perhaps they really were completely overwhelmed.  That didn't necessarily make their recommendations incorrect.

I went on to, you guessed it, research all of this information.  The director assured me there were no studies comparing children with apraxia who didn't attend a "day treatment" program with those who did, because no parent would sign their child up for that study.  No parent, genuinely concerned about the welfare of his or her child wouldn't send the child to day care with teaching aids paid at or barely above minimum wage to be in a class with only other children who have a severe language delay.  Where the "teacher" and aids would not understand anything he said all day, nor would they really have time to listen.  They did, however, dangle the prospect of a better speech therapist for Spencer if he enrolled in this class as well as him being potty trained without much if any effort from me.

I observed the class, and I can make the above statements about it with confidence.  The aids smiled hardly at all the entire time I was in there.  The teacher was exceedingly unprofessional and had poor command of what would be considered "professional" English.  They would, however, be singing loudly in his face every time they "transitioned," as if that was going to somehow ensure he didn't have later language learning issues.  They were going to read the same book every day for a week, to, you know, meet these kids "where they're at" cognitively.  Clearly, no one would pass up putting their child with above average cognition in that situation.

And, again, after much research, we signed Spencer up for that morally reprehensible "study" I'd asked about.  The one where he continues to receive high quality, frequent, intensive speech and occupational therapy (the recommendation you will find everywhere when you google treatment for Childhood Apraxia of Speech.  I could not find one recommendation on any apraxia website for enrollment in "day treatment").  The study where, as a just turned 3 year old, he remains in his home environment where he is successful at communication, loved, known, mentally challenged and encouraged.  The one where the children he is around 40 hours a week speak in appropriate, educated, English prose as opposed to grunts and temper tantrums.  You know, the one where he goes to the grocery store, Little Gym, the zoo, the playground, his grandparents' houses.  The one where he lives real life as opposed to group care life called "school" before he's even 3.5.  The one where he learns how to be himself as opposed to learning how to be herded around without getting in trouble.  The one where he bonds with his baby sister.  The one where he learns that every part of every day is not just about addressing his entertainment or academic needs.  The one where he lives and learns as part of a bigger whole.  The one where he learns to be part of a family.

Lest you think we made this decision quickly, please know that I consulted with no less than ten unrelated professionals in both the therapy and academic world of children.  All of them were removed from our situation.  Some of them met with Spencer and me to help inform their opinions and some of them just spoke with me or with Jonathan.  I included his pediatrician, multiple experienced pediatric speech and physical therapists as well as some early childhood educators.  Neither his first nor his current SLP would give me their opinions.

Not one of the ten plus professionals thought Spencer was a good candidate for day treatment in a classroom set up for language-learning impaired children.  In fact, all but one were staunchly opposed to the recommendation for Spencer.  The one who was not "staunchly opposed" recommended a re-evaluation by someone unrelated to the therapy center he was attending for a better picture of what Spencer needed.  The group was made up of both males and females, some of whom had children of their own who had attended daycare full time from a young age.  I point that out to say that neither my inquiry nor their responses were intended as an argument for or against daycare.  Rather, it was an inquiry into whether or not that was truly the best or, as had been put to me, the only environment in which Spencer would be able to experience timely, clinical success.

I should also point out that besides the ethical alarms going off regarding conflicts of interest for their "day treatment recommendation," I have no problem saying that Spencer spending time with a (good) teacher and other kids who are communicating well for a few hours a day sounded like a great thing for him, with probable and clinically proven outcomes.  However, at this center they offered no in between or part-time options.  He had to spend a minimum of forty hours a week there, no questions asked.  He had to spend a longer amount in day treatment than twelfth graders spend at school all week, because, why would that amount of time be stressful at all for a 36 month old child who had never attended any sort of part-time program who also just had a new baby sister?  (The director also attempted to make the argument that since Evelyn had come along, it'd really be best to send Spencer off during the day anyway, to give me more time and energy for "the baby.")

I write all this to say that one year later, no one who knows Spencer can keep from commenting how well he is doing speech-wise.  So, apparently, you can put one tally mark in the column for success for those poor children whose parents dared sign them up for the unpardonable neglect study.

The take away message of this post is to exercise caution as others tell you what's best for you child, aware that as the parent or full-time caregiver, no one knows your child's needs or wants the best for him like you do.  The take away message for a therapist is to please always seek to give ethical, truthful opinions and recommendations.  Your position as an authority on a specific topic, holds you to a high standard.  Slanting your opinion or recommendation based on what your boss thinks should be done is unethical at best and, honestly, criminal in my mind.  If you find out this is being done at your work place, I would encourage you to look elsewhere for employment.  Children have to depend on others for protection and advocacy, please think twice before allowing anything besides your objective (as much as it can be) opinion to shape your recommendations or lack there of.

Coming up next, what does "success" means to a child with apraxia--or any child?

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