I think I may have just gotten a glimpse of that mysterious
light at the end of the tunnel. 3 ½ years of living with CCHS and fighting to
get my son the help he needs and I think we might finally be making progress
finding outside help. My frustration with the school district IEP team have led
me to take an even more aggressive approach, as if that were even humanly
possible. After many tears and sleepless nights, more so than usual when you
sleep to the sound of a ventilator every night always ready to be in full
emergency mode at any given time, I decided if the school IEP team is not
willing to step out of their comfort zone and admit Wyatt needs more services
than what they offered so far, then I will bombard them with private evaluations
from every specialist and therapy service available until they realize, getting
rid of this crazy mom is impossible. So two weeks ago I put myself and Wyatt through
yet another depressing speech evaluation but this time particularly focused on
his need for ASL instruction and his problems with fine finger movements to
improve the accuracy of that mode of communication. The result, nonverbal with severe
to profound expressive and receptive speech and language delay and a recommendation
for Occupational Therapy along with Speech Therapy to improve and expand his
ASL communication. A week ago, Wyatt also had a Physical Therapy evaluation
done to address his balance and coordination issues to specifically point out
the safety concern of constant falls. During that evaluation, the Physical
Therapist also got a glimpse of Wyatt’s cyanotic breath holding abilities and
in bold letters wrote in her report the need for behavioral support services.
(Bonus points.) Legally the school district now has to also take into consideration
these private evaluations when reevaluating Wyatt’s IEP services and goals.
Since I am out of patience for this pass the bucket school district game though
I went one step further and hired an IEP advocate the write up all the
paperwork with the appropriate legal terms and to help represent Wyatt’s case
at the next IEP meeting. Hopefully then the school will understand that I’m not
willing to waste any more time with politics, it’s been 7 months now of trying
to get him to start school, and that I’m serious about my request for an “appropriate”
placement. Simply sticking the kid in a self-contained Pre-K ESE classroom with
a one on one nurse by his side and a mediocre speech therapist who isn’t
willing to expand her own horizons beyond picture communication techniques simply
isn’t good enough. The reality is, Wyatt may never talk and even if he does, it
may be years before he can form an understandable complete sentence. And even
then, with his medical diagnosis, there will always be times when he is hooked up
to the ventilator, his trach is inflated and he physically can’t speak because
no air can pass by his vocal cords with an inflated trach cuff. Therefore, ASL
is and always will be his failsafe primary mode of communication. And it is for
that reason that the appropriate placement for my son is in a total communication
program, where ASL and English are used simultaneously, where he cannot just be
understood by an interpreter but also communicate back and forth with all staff
and students around him and expand his ASL skills. Only then will he have the
best opportunity to thrive, to learn uninhibited, and to gain an understanding
of social norms… But that’s a speech for the next IEP meeting next Friday. Rant
over… What made me see the light at the end of the tunnel was actually thanks
to Wyatt’s Physical Therapist. She went above and beyond her job description
and asked a Psychologist at the hospital to join us during Wyatt’s first PT
session so the Psychologist could talk to me directly about the behavioral issues
regarding the cyanotic breath holding episodes and to see what she can do to
get us help in that area. That seemingly simply 30minute Physical Therapy
session turned into a pre-evaluation session with a Clinical Pediatric Psychologist
who then managed to get Wyatt scheduled for a complete Neuropsych evaluation.
It usually takes months to break into that specialty and with minimal staff
available in that department and an overload of patients waiting for services,
I had a hard time holding back tears when that Psychologist walked in the door
during Wyatt’s PT session. Finally here was someone who was willing to listen,
who understood that this was not just a medical or not just a behavioral issue
but rather that these two factors were connected and could not be completely separated.
She could help us start to manage these episodes better from a behavioral
standpoint to maximize Wyatt’s coping skills while minimizing the medical
impact, instead of simply reaching for medication to numb this kid’s
consciousness. This upcoming Neuropsych evaluation will hopefully not only give
us as the parents a new reference to work with to help Wyatt reach his full potential
but it can also open doors with the school district. I am forever grateful for
that Physical Therapist and that Psychologist for reaching out and going beyond
what is expected of them and looking at the needs of the whole child (and his
parents).
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