Many of my friends and families will refer to
"cognitive leaps" in describing the explosions of development they
see in their children. I can't say that I have truly witnessed these sudden
bursts of growth in Cyrus because development happens so slowly and subtly that
I often don't notice any change at all. But occasionally, it will hit me and I
will ask my husband - have you seen him do this? Is this new? I have to ask
because I'm not completely certain the behavior is new or if I just didn't
notice it before.
Cyrus just turned three last week, and as always, I
find myself reflective and taking stock of what Cyrus has gained this year.
Just recently, he seems to have become responsive to touch - and by that, I
mean he likes it! You can ruffle his hair or touch his temple and he'll
sometimes smile! Before he would turn away or make an irritated sound. He's
gotten better at giving hugs - they seem more intentional in any case.
He has opinions! He will take that first big gulp
of a baby food that we know he doesn't care for, but that we can get him to eat
anyway, except now he'll make a face of disgust - like there's this whole
"Ew!! I don't want this one!" and he'll still eat it, but he will
take his sweet time with it in a way he didn't used to. He's gotten a lot
better at avoiding taking his medicine, employing strategies such as gurgling
to prevent him from swallowing it. Though I admit this is a talent, I'd have
sooner wished he hadn't developed, it's still good to see him complain!
He vocalizes so much more often. Kyle recently said
that Cyrus makes five distinct sounds and he knows what four of them mean. But
in general, there's a more consistent call and response pattern that takes
place so we can have "conversations"! And I am finally confident that
he knows his own name because when someone says it he turns towards them for a
second. He even knows some of his peers' and teachers names as he will look
towards them when they're names are used as well.
As of his third birthday, Cyrus is 3 feet 3 inches
tall and 30 lbs! Three is apparently Cyrus's magic number at the moment! And
three is also an important birthday in the education world.
A few weeks past we attended our first IEP meeting
to make the transition from early intervention services into the school system.
Our first meeting was a very positive experience where our concerns and goals
for Cyrus were heard, and as a bonus I got to learn about language assessment
for young non verbal children. Cyrus has mastered all communication skills of
about a 3 month old, and has scattered communication skills from 3-12 months
old. And has demonstrated no verbal communication skills beyond that point.
Cyrus was placed in a sheltered special needs school and he will have six
classmates total. He will continue with OT and PT, and have Speech Therapy
added into the mix. And he will spend his day on motor development and learning
alternative communication strategies as before only now he will be spending
multiple hours on it each day. Cyrus also qualifies for a 1:1 nurse who will
accompany him on the bus, administer medication, feed him, change diapers, and
of course watch for and respond appropriately to seizures while he is at
school.
We have learned that agreeing what was needed was a
lot easier than actually getting it all set up so he can start! Before Cyrus can
start, we have to have reports and orders from all his specialists with
instructions for his nurse. And while I am great at filling out paperwork in a
timely fashion, getting other overworked pulmonologists and ophthalmologists to
fill out their portion so that my child can go to school is a slow and
frustrating process... Our neurologist was fantastic - she wrote out a seizure
action plan within twelve hours of my request! The pulmonologist however feels
unqualified to comment as Cyrus hasn't seen him in over a year and is
completely booked for the next few months. Guess it's time to get a new one!
Ophthalmology never responds to my voicemails, messages, or requests for an
appointment. May need a new one of these as well. And we didn't even have an
audiologist (but we fixed that! Turns out Cyrus can totally hear, but has
excessive pressure in his left middle ear, that has probably been the source of
his irritation for the past few months...). Oh! And the school needs to
actually a hire the nurse, and who knows how long that will take.
Needless to say, it's been a slow process, but the
school principal and especially the school nurse (she came to my school
during my prep period when I couldn't meet with her at hers to answer all my
questions!) have been absolutely phenomenal in offering guidance and support!
So while it has been an overwhelming and daunting task, we're making progress
and truly excited about Cyrus's new placement.
The only bittersweet part of our transition so far
has been having to say good-bye to Cyrus's teachers. His Early Interventionist
(EI), Linda, came for her last session the day before Cyrus turned three. She
is the therapist that gave me hope again when Cyrus
was only five months old by showing me that he could see and discovering
what he could do, rather than everything he was missing. She was
the best at reading him and being just endlessly patient with him. We are going
to miss her so much!
And today, Cyrus graduated from his non-verbal pre
pre-school class. They did the adorable little ceremony (video linked here) where they gave him a
graduation present, a graduation hat, and then sing their normal good-bye song
except the normal lyrics of "We'll see you again next time," turns
into "We'll see you again some day." And yes, that simple
substitution is enough to make me cry. Nicole is his favorite teacher - she
communicates with him. She asks him questions and lets him make choices. I have
no doubt that he loves her so because he doesn't have to struggle quite so hard
to tell her what he wants the way he has to with the rest of us. That around
her he feels seen, heard, and understood. She is a difficult person in his life
to say good bye to. And he has other aides and therapists here as well he's
connected with - Jenny, Elizabeth, and Vicky who have played with him, found
new ways to make him laugh and smile, and helped his develop that
critical core strength and head control. It has been an amazing class for
Cyrus, and I hope he finds as good of a niche in his new one.
We've been a little behind in his actual birthday celebration, but we
plan to take him to the local Rockin' Jump Trampoline Park this weekend
rather than throwing a party as we figure he will just love all that extra
bouncing.
