Every
day brings new challenges, and new beauties! Many years ago a dear friend said, “You just have to be
prepared for your experience to be different,” in regards to raising a child
with LCHADD. In this statement I
have found wisdom. Our
stories are all different, this is true for the family with LCHADD and the
family without, but perhaps I am forced to accept this understanding more often
and in a unique way. People asked
me throughout the summer what my fall would look like with Christopher starting
school, and I found myself often stumbling over words or just staring at them
thoughtfully. I didn’t know what
to expect and I wanted to be open to each new day, embrace it for what it was
and love it regardless. I knew
that Christopher’s kindergarten experience was going to look a little different
than his friends, but what that entailed I could only speculate.
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| Christopher's first day of school! |
First,
Christopher LOVES kindergarten! In
general he gets excited about anything new he is about to pursue, so it didn’t
surprise us that he grinned ear to ear that first day of school. He has loved learning about shapes, the
classrooms rules, music, PE…and of course recess. When I asked him the other day what his favorite thing about
school was he said, “My friends! I
love playing with Ireon and Beck!”
I am so glad he is there and able to have consistent friendships, and
learning how to communicate to others without me.
Our
journey into school has been filled with twists and turns that are quite
different from the average student.
Many families enroll their child into school, buy school supplies, cry
the first day and then drop them off at school. Our experience started a week and a half before school when
we learned that his number was called off the waiting list for West Side Charter
School. We were elated and a
little nervous about how we would proceed with his 504 Plan so close to school
starting. The principal was
amazing. After we accepted the
open spot at West Side Charter and shared about Christopher’s condition, he
e-mailed us immediately. The
principal and the Dean of Curriculum organized a meeting for us to come and
share with the staff about Christopher’s LCHADD. We then met with the nurse, filled out paper work and had
meetings with his two wonderful teachers, Ms. Rosella and Ms. Monica. We worked together creating and
implementing his 504 Plan. I
stayed in the classroom most of the first week, so we could all get a better
handle on how to navigate his extra snacks throughout the day and monitor his activity. Through this experience I have not only gained a
better understanding of what his day looks like, but I've also been able to meet his dear
classmates, who have captured my heart!
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| Christopher and Ms. Rosella, lead teacher! |
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After
two days of school Christopher got a cold, so we (the teachers, nurse and I)
worked closely to navigate his extra fluid intake. (When Christopher gets even
a common cold we have to increase his fluid to 60-80oz a day to flush his
kidneys, in case of muscle breakdown.)
We are still navigating how to handle half-days. Our general rule of thumb is that when
he is recovering from a cold, or his energy seems low we have him attend until
12:30 or 1pm. Yet, even with this
general rule deciding how often to use half-days is tricky. Our reality is that he has already been
sick three times this year and we are in the first month of school. Also it’s hard to navigate what is the
typical “kid tiredness” that comes with the transition to full-day school and
what is LCHADD. I am so grateful
to have his wonderful teachers and administrators to discuss this with. It is comforting to not have to make
these calls on my own.
Perhaps
what hit me the hardest today is that all of the sudden we have a team of
educators and extra people in our lives that really care about
Christopher. This is a wonderful
thing! Last year I made the hard
decision to home school Christopher because he seemed to spend more days at
home sick then participating in Pre-K.
We enjoyed each other and had a lot of fun, but there was a certain
level of loneliness to our experience, even amidst all the events we
participated in! Toward the end of
the year Christopher said, “I love you mommy, I just need to be around other
people.” I already knew we would
try public school again the following year because I
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| Christopher and Ms. Monica, para-pro! |
felt like I was drowning
trying to lesson plan, be teacher, nurse, create play-dates, stay on top of
medical appointments, fight with the insurance company…and then just be mommy.
Christopher’s statement solidified it all and we have appreciated our new
community this year.
Christopher’s
school year will be filled with adventure! Christopher will attend school. I will participate and help out in the classroom on occasion. He will come home early at times
when his is tired, have school at home with special projects when he is sick,
and have Skype calls with his class if he is out for awhile due to illness. He will carry a massive cooler every
day with all of his snacks and milk, and communicate with the teachers about
how his body feels. He will make
friends, laugh and cry with them, learn to read, learn to engage in meaningful
conversation and learn how to wait his turn. Our journey may have a few different mountains and turns,
but it truly is delightful!
