Miles’s Story
From
the moment he arrived, Miles has been a constant life force, a source of
inspiration, and giver of true love in our family. He spent the first two months of his life in the quiet
comfort of status quo. From
delivery through several doctor’s appointments, Miles was the picture of
health. He was never fussy, always
ready for snuggles, and was responding positively to our presence; basically,
the arrival of our first child was typical and predictable. All except for a slight snag, Miles had
not developed a “social smile” by his two-month check-up. It was at this time our pediatrician
first mentioned the possible need for genetic testing, as a precautionary
measure. I remember leaving that
appointment literally shaking; my world, my precious son, may not be as healthy
as we first imagined. Following
the lab procedure, our family spent a breathless weekend anxiously awaiting the
results. During this time, my
first Mother’s Day passed. While
we all put on brave faces to celebrate the special occasion, my heart was
breaking inside as our son’s fate waited to be revealed.
By
the time we learned of Miles’s condition, a translocation form of Down
syndrome, we had prepared ourselves for the news. Oddly enough, hearing the news was such a drastic relief for
us. We could now breath, collect
ourselves, and seek out the best possible resources for our beautiful son. Within the week of learning about
Miles’s condition, I had contacted Child Development Resources. Their response was immediate, as was
their compassion for my family.
To
be honest, the period of initial evaluation and IFSP development is a bit of a
blur. Not only were we coping with
Miles’s recent diagnosis, we also learned very quickly that he had a profound
congenital heart defect. He was
quickly scheduled for open-heart by-pass surgery. Prior to that procedure, we were able to have a few sessions
with Robin, Miles’s case manager and OT from CDR. We used that time to discuss
what post-op accommodations would be needed, and, more importantly, we began to
build the foundation for a wonderful partnership.
Miles
sailed through the surgery like a true champion; he was much stronger and
braver than the rest of us. Following
a few weeks of recovery, Miles resumed his work with Robin. She was both an excellent therapist and
an instructor, showing us how to best encourage Miles’s development and to
reinforce her efforts. In Miles,
Robin saw and fostered his awaiting potential. Over the next year, Wilda joined our team as Miles’s speech
therapist. Her patience and
persistence was evident from day one.
Robin and Wilda will always be very important people in Miles’s life;
their dedication and support are the driving force behind Miles’s current
successes.
In
addition to receiving direct services, Miles also attended a weekly CDR
playgroup. From hiding out in the
ball pit to racing around the playground on splash days, Miles had many great
friends (children and staff alike) during those visits. We also made some great friends,
too. Watching him explore and
develop in a truly supportive and nurturing environment was a gift for us. Furthermore, CDR did an amazing job
providing transitional supports for our family as Miles made the move from
in-home services to attending a special education program in the public school
setting. While the transition
workshop for parents was very helpful, watching Miles ride the CDR bus in
preparation for the public school bus was the highlight of that time. To this day, Miles’s favorite part of
his school day is riding the bus, a fact we solely attribute to CDR.
Time
seems to be racing by now. Miles
has just entered his second year in the public school setting. Not only is he getting bigger by the
day, he is now a big brother. His vocabulary is exploding, just
as his command of his environment.
And rest assured dear friends at CDR, he is still blowing kisses.
Aside
from all of the support Miles received, I will always be indebted to the
personal care that came my way.
Prior to Miles’s birth, I began my work as a special education teacher
for the county. All of my classes
and training had only prepared me to be a teacher, not a parent. Robin, Wilda, and countless of other
CDR staffers helped me make the leap from professional to parent by
entertaining my thousands of questions and providing gentle and continual
encouragement. Your support has
helped me become the parent I am today.
Thank you from the bottom of my heart.
1 comment:
Excellent! I'm sure it will be published in many places! Your knowledge, compassion and love for Miles shines through in every word!
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