Thursday, June 10, 2010

Beautiful Minds ... and those who treat them

I'm not normally one to rant and typically have issues with those who do (publicly).  However, I've really been struggling on how to address my son further.  We've been in a "frustrated" state for three months now, waiting for his name to come up in a very long list.
I guess I should take comfort from the fact that he didn't show "red flags" in his early assessments.  Even at his two year check-up when I asked about his speech, the doc just responded that he seemed a tad quiet but he wouldn't worry until he was three.  Oh, how I wish I had pressed harder!

Now I feel trapped between the proverbial rock and hard place.  His pediatrician only wants him assessed for speech.  I guess I should backtrack ...

Months ago, I had a conversation with my sister-in-law about little E's speech delay.  As I described to her his paradox of symptoms, she mentioned how similar he sounded to the son of a friend of hers who had been recently diagnosed with a sensory integration disorder (which in turn was treated with a diet change).  Somehow, the dietary/sensory issues were the culprits behind this child's delayed speech!  So, I mentioned this to my son's pediatrician.  She hedged and determined that he should be assessed for speech delay only, stating that if there was more to his delay that the pathologist would pick up on it and refer him further.  She wrote up a prescription for his referral to the adjacent hospital to our clinic, and he's been on the waiting list ever since.  That was in March.

Now, my degree is in anthropology.  I took psychology, and I know we're working with a relatively short window here.  So, I started to fret in confidence with a friend (who happens to have an amazing special-needs son).  She jumped to my aid to the best of her ability, almost overwhelming me with resources (God bless her!) and sharing my situation with her son's occupational therapist (all the while encouraging me to contact her myself).  I got in touch with the OT, who struggled to find a solution for our situation.  Another hospital has a shorter waiting list, but we're still looking at six months, which is presumably when we'll be looking at moving again.  Nuts.  Or, I could go with a smaller clinic, but there's a catch: my son needs a prescription for assessment by an occupational therapist--the very thing his ped is avoiding.

Now here's where it gets either infuriating or maddeningly funny:  I took one of those on-line autism questionnaires (my son was born right at the height of autism awareness, so of course with his delayed speech this has always been one of my nagging fears, despite assurances from friends who work with special needs children that he is in NO way autistic).  Although the OT is not licensed to diagnose, I filled it out and sent it to her just so she could get a clearer feel for what my son and I were working through.  Her tentative assessment?  You guessed it:  sensory integration disorder.  (This could also explain his extreme temper.)  She advised I secure a prescription for assessment by an OT.

So now I find myself at an impasse.  I trust our pediatrician.  She's been great with Wyn (E's baby sister).  I know there's probably a reason she's avoiding an initial assessment by an OT -- perhaps she's seen too many kids go through unnecessary tests, and subsequently been over-diagnosed and over-medicated.  So, do I call her office and press for a prescription for assessment so I can take him to another clinic (or at least get him on a shorter waiting list)?  What if she continues to hedge?  I don't really want to change docs (especially if the next one has the same school of thought).  Or, do I just look for an independent speech pathologist and pray that either this person can refer him over or that his name moves up in the waiting list at the hospital?

On a brighter note, he abruptly began talking more during potty training (blog on that to follow).  Once again, he proved to us that he quite capable of doing anything he puts his mind to ... which is both encouraging and infuriating all at once!  Ah, the joys of parenthood ...

1 comment:

  1. God always gives a momma insight into her child's needs. If you feel like you need to press for an OT referral based on sensory integration issues, then I would encourage you to do it! When it comes to your child, you know more about him than any of his doctors. I pray that E's pediatrician may listen to your God-given wisdom concerning his speech delay.


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