August 2012
“Early intervention makes such a increased difference in
medically complex and delayed kids.”
“You will need to make sure you have early invention for JD
from birth.”
“Kids who have early intervention do much better in school.”
After discovering JD’s diagnosis friends whom have kids with
special needs, or friends who are therapists/specialists, continued to talk about
the importance of early intervention. Sure, I had heard people throw around how
beneficial early intervention was for kiddos. I assumed as parents, Nate and I would intervene early as
well. Duh, why wouldn’t we start working with him as soon as we could?
Turns out as I walked around touting how we, of course,
would “do” early intervention I knew nothing about what I was saying. As I discussed early intervention others discussed Early Intervention . . . notice the difference? Lowercase ‘e’ and
lowercase ‘i’ versus capital ‘E’ and capital ‘I.’ Oops.
As JD was being discharged from the hospital they go over a
lot of paperwork and one piece discussed the next steps for Early Intervention
(capital ‘E’ and capital ‘I’). “Oh so, that’s like an actual thing?”
E(e)arly I(i)ntervention to me meant as parents we needed to
intervene early in JD’s development to ensure we could provide him the tools to
grow and progress both mentally and physically. However, Early Intervention is
actually part of a state run program to ensure children from birth to three
with diagnosed disabilities or developmental delays receive support to maximize
development. Basically, they offer services such as a variety of therapies for
kids who need extra help. Who knew?!?!
A week of being home brought letters, phone calls, and lots
of information that I did not want to read. So in August of 2012 I cleaned the
condo, bought fresh flowers, and actually did my hair for our first meeting
with our Early Intervention (or EI as the in-crowd calls it) coordinator Holly.
To spare you the details here’s the gist:
Step 1: Meet with you assigned coordinator to
assess if your child qualifies for EI.
With JD’s diagnosis he automatically qualifies then you add
his cleft palette, clubfoot, ASD (hole in his heart), lack of oral eating, it
goes on and on and on . . . and JD becomes the top candidate for EI.
Looking back I never realized how I would go back to this
moment many times as it was the first time outside of the hospital I would be
asked to detail all of JD’s long history for his short 4 months of life.
Step 2: Meet with EI
coordinator and four different therapists (each specializing in their own
field) to evaluate which therapies JD should receive.
This is a very strange step as 5 strangers walk into your
home to tell you what your child can and cannot do. Some parents take this step
very hard but for me it was more confusing. We had been home for less than a
month still adjusting to life with two kids and these five strangers were
talking about the next 3 years of our lives. They spoke as though I should
understand what they were saying and they spoke to each other like it was all
business. Shame on me as I sat
their smiling and nodding along with the 5 strangers when my head was scrolling
with questions.
Coordinator: “PT
once a week, OT once a week, no need for Developmental just yet and let’s just
start Speech at 2x a month. Do you have any more goals? Anything else you think
we should add? What do you think mom?”
What I actually said:
“No, sounds great.”
What I was thinking
and should have said: “Huh?”
Thus began our journey with EI.
Step 3: Receive phone
calls from 3 new strangers trying to set up time to meet each week for the next
three years.
Confession . . . I took longer than normal to get back to
the new therapists. Everything happens all at once and your life as a weekly Therapy Mom starts very quickly. Consequently, I stalled. While I
understood there was no way around being a Therapy
Mom I was not yet ready to open the floodgates.
I’m not sure when I finally worked my way up to our first
therapy appointment but it was not as hard as I thought. EI therapy is similar
to running a long distance, the first time you are nervous, not sure of your
abilities, not sure how far you will make, wondering if you need to stop . . .I
had no doubt JD would perform like a rockstar but what about me? After the
first therapy session it just got easier. I will spare you the details of 3
years of hour-long therapies anywhere from 1 to 5 times a week. The EI
therapist slowly became more than just a routine; they became part of the
family.
 |
| Sitting practice at 2.5 years |
 |
| Last Speech Therapy session with the fabulous Katherine - almost 3 years old |
 |
| Last Occupational Therapy session with the amazing Kara |
 |
| JD coloring for the first time and loving it |
*************
March 2015
As JD is just two weeks away from aging out of the EI
program I am holding on with white knuckles to that title of Therapy Mom. After
11 different therapist, 500+ hours of therapy, 15 different pieces of
equipment, 50+ developmental toys, 15 group meetings, 10 different evaluations,
100s of medical terms and daily practice . . . I am a PROUD Therapy Mom.
Just when I get the hang of it, just when I love the
routine, just when I think we have the absolute BEST team in place for JD
everything stops. As of April 2, 2015 I will no longer be a Therapy Mom as I transition
into School Mom.
Yep, the Early Intervention program starts at birth through
their 3rd birthday. On April 1st JD will be in EI on
April 2 he will officially age out of in-home therapy and he will start to
attend school. My baby who has never been with anyone besides family (and
Therapists) will attend a full day preschool program Monday – Friday.
Back in November, Nate and I met with the EI social worker
to begin the transition process from EI to school. Turns out our school
district absolutely ROCKS at this Special Ed thing. As this lovely woman sat at
our table explaining the potential programs for JD, Nate and I did everything
we could not to shed a tear. Slowly this very large weight lifted off my
shoulders as I heard her say “you guys are in the best school district for JD.”
Interesting, I did not realize how heavy this boulder was on my shoulders until
it was gone.
As with everything we do for JD there are a few steps.
Step 1: Referral from
EI to the school district
Step 2: Evaluation of
JD’s abilities
The evaluation phase is based on which services JD is
currently receiving through EI. Some kids might have one or two specialists in
the evaluation but JD never likes to be outdone so we walked into a room of
eight different specialists with more filtering in throughout our meeting.
A peak inside my heart will show that with each new
situation my heart beats a little faster.
What is their first impression? Ba-bum
What do people think about him? Ba-bum, ba-bum
Will they treat him the same way the same way they treat
everyone else? Ba-bum, ba-bum, ba-bum
Will they judge his abilities? Ba-bum, ba-bum, ba-bum, ba-bum
Will they know how to work with him to get his best potential?
Ba-bum, ba-bum, ba-bum, ba-bum, ba-bum
With each thought, my heart gets faster and stronger. But
the one that makes my heart hammer . . . makes my heart rate skyrocket . . .
makes my heart louder than Big Hair Band drum solo is . . .
Will they like him? Will they give him a chance in spite of
his global delays? Will they treat with respect the way everyone treats Connor
and Kaitlyn? BA-BUM,BA-BUM,BA-BUM,BA-BUM,BA-BUM,BA-BUM
Luckily, we have had nothing but support from family and
friends but what about new people? Will they give him a chance before they
judge?
I try not to be an anxious person. I enjoy new environments
and meeting new people and . . . surprise . . . I am very social. Chatty if you
will. But when it comes to bringing JD into a new place or introducing him to
new people I get very protective. VERY PROTECTIVE. And I worry. A LOT!
Walking into the brightly colored room on a sunny March day pushing
my handsome blonde hair blue-eyed boy in his matte blue wheel chair wearing his
maroon football sweater with J. Crew rolled sleeves, jeans, and plaid shoes my
heart was pounding out of my chest.
I scan the room of the 4 therapist, 1 teacher, 1 social
worker, 1 nurse, and 2 directors searching something. Searching for a flicker, a gaze, or a
flash alerting me to the moment they realize JD is different. More different
than most of the kids they work with. I focus on the eyes as the eyes tell it
all. People can control the expressions on their face easily but it’s the eyes that
betray the emotions.
I scanned, I searched, I looked, and I judged assuming these
ladies would in turn judge right back. I
. . . was . . . wrong!
The flicker I saw was a smile that reached the eyes because
they were excited to meet JD. The gaze I noticed was the complement of how
stylish JD was dressed. And the flash I witnessed was enthusiasm to start
working with JD.
JD’s school evaluation was the beginning of what would a
very smooth EI to school transition. A process which is known to be difficult,
emotional, dreadful and full of fights was genuinely a very pleasant and
fulfilling experience for us.
 |
| Charming the ladies at his evaluation |
 |
| The ladies charming JD |
***********************
April 6, 2015,
8:22pm
In 8 minutes I will begin packing my baby boy’s school bag.
Carefully running through my checklist to insure his bag is fully organized and
prepared for his first day of school. JD and I have already met his teachers,
therapists, and classmates but tomorrow he will be there all by himself. Nate
and I will drive him to school, walk him in, get him settled, and then walk out
without him. My stomach is in knots, my heart is pounding, and my mind is
spinning. JD will thrive in this environment and continue to look damn handsome
while showcasing his new abilities.
Tomorrow will be a remarkable start to whole new chapter in
the Gawel family story. From a surprise prenatal diagnosis of a rare syndrome
very few doctors had heard of to a 3½ lb baby boy being delivered 4 weeks early
to 3½ months in the NICU to many, many, many more hospital stays to wondering
if he would make it to his 1st birthday to now heading off to school
as an adorable, healthy 3 year old boy. It has been a crazy wonderful ride and
we hope you continue this journey with us!
Check the next one off the Gawel Adventure List – James Douglas’
first day of school!!!!
 |
| Brothers! Connor loves his brother |
 |
| Happy 3rd Birthday to this kid with great hair |
 |
| The thinker |
