Monday, July 17, 2017

Fast Forward


Becca’s well child visits were pretty routine.  She looks great!  She’s growing nicely!  She’s gorgeous!  You know – the usual.  At about the 4th month the doctor wanted us to start ensuring that we were giving her enough tummy time; at the 6th month she instructed us to make sure we were working on getting her to sit up on her own.  Each visit brought another instruction: she’s OK, but just a little behind here and here; her weight is fine but make sure she is getting enough formula throughout the day.  By her first birthday this speech pathologist was officially concerned that we were dealing with quite a few delays; by her 18th month we were setting up referrals with developmental specialists.  Shortly before her 2nd birthday she finally took her first steps; first words came later.  Mid-way through her second year her physical therapist asked if we had any sensory concerns.  By her third birthday I was researching clinics and reading books on sensory processing disorder while at the same time struggling to accept the fact that my daughter, the child of a pediatric speech pathologist, still had some very significant speech and language delays.
At some point in the midst of all this the idea of “advocacy” took on new meaning for me.  I like to think that I am an advocate for all three of my kids – that I see their needs and campaign on their behalf to make sure that those needs are met.  But this was becoming something new and more urgent.  This wasn’t about getting my kid into the right school but making sure she had the opportunity to even apply to that school.  My worries were not about making sure that the world was her oyster, but that she would be able to navigate in this world independently.  
These are still my worries.
In case you’ve never spent much time with a speech pathologist, it might be helpful to know that we have, and use, a lot of words.  After all it’s baked right into our title.  We are also passionate about doing everything we can to meet the needs of the people we are serving and fighting to get the resources our patients/clients/students need.  Given these two facts you can imagine the exponential drive you feel when you are working on behalf of your own child. So when an early intervention team told me –me,  a pediatric speech pathologist – that they weren’t recommending speech services for my almost two year old who had, at that point, maybe 5 words (intelligible to a familiar listener), well…  they heard about it.  They heard a LOT about it.  I had plenty to say about that decision and found plenty of peer-reviewed evidence to refute their offer.  (It also helps to know a lot of other speech pathologists who had plenty to say about this decision, too. Becca had an army behind her, let me tell you.)  And to my great relief – and theirs too, I am sure – they relented.  
This would not be the last time I put on my armor and went to battle for my kid. And I know I haven't seen the end of it, either. Because of her I am more courageous and determined than I ever knew I could be. One of a million ways this girl has made me a better mother, friend, therapist and advocate. I owe her more than she will ever know.
Soon enough our girl was getting speech, physical and occupation therapies.  Three hours of therapy a week. We started "preschool" a year or so earlier than we had planned, with the hope that more peer interaction would provide good models for her. Eventually we added SMOs - those short little orthotic "braces" you sometimes see kids wearing - to help stabilize her ankles to improve her walking/climbing/running skills; we even tried a (very brief) stint with a pressure vest but that proved one bridge too far for this mama. All the while the gains came, but oh so slowly. So I asked her SLP, a friend and colleague from work, if she knew of any other resources we might consider. She suggested a local clinic that integrates hippo therapy into their program. And before long we added two more hours of therapy - five hours of therapy, every week, plus two 6 hours days of preschool. Throw in the random visit with the developmental pediatrician, ear, nose & throat doctor, audiologist, orthotist and orthopedic physician and the child had a busier calendar than I did.

The gains continued to come, but still so very slowly; for every 2 weeks of spectacular progress there were 6-8 months of hard work that preceded. Throughout all of this I continued to ask more questions about sensory processing and tried to make sense of how this was, or wasn't, impacting Becca's progress. I have described it many different ways: a fog, a veil, "Becca's World;" at the end of the day SPD feels like a barrier that keeps us from reaching her, and Becca from realizing her full potential. But my training as an SLP didn't equip me with the knowledge or the skills to figure out what was at the root of the fog or how to help burn it off.
Eventually I decided that this was a riddle we couldn't solve on our own, and the treatment models - familiar to me through my own clinical experiences - used by most clinics are valuable for identifying, addressing, and measuring very specific goals but they weren't ideal for helping kids and families unravel SPD. I felt like we were stuck, and I couldn't see a way ahead that would get us where we wanted her to be.
And then I found STAR.


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