Despite an IEP that has been a part of my daughter’s education
since she first stepped foot into a school, thanks to the
coordinators that passed her ever growing file from Birth to
Three to Early Childhood to Kindergarten, transitions are never
easy for our family. Nadia, my daughter, has 22q11.2, a rare
chromosomal deletion that can cause over 180 listed health and
learning complications. If you met my bubbly Nadia in a
classroom on the first day, you may only notice her short
stature, as she barely skims the 4 foot mark as a 5th grader, but
what you can’t see are what make a new school, new grade and
new teachers or aides so incredibly difficult. The unique
aspects of 22Q, the way it presents differently in every child in
what the missing piece of chromosome robs or, perhaps just
borrows, delayed until time, or teachers fill in the gaps, mean
that I can’t just print out a list of what Nadia needs in
school and hope for the best. Unlike the holes in Nadia’s
heart that were patched by skilled surgeons as we stood silently
by, waiting for them to work their magic and heal our baby, the
holes in Nadia’s learning and in her health are not something
that we can hand over on the first day of school and wait
silently while the team at school “fixes” what is wrong.
Indeed, as Nadia grows older, it seems that our ability to trust
during times of transition has waned and our responsibility has
grown heavier.

Yesterday is a perfect example of the struggles Nadia faces, the
perfect summary of why four weeks into middle school, I feel like
my heart is boarding the bus every morning on Nadia’s sleeve
and coming back eight hours later, weighted by even more worries.
Nadia woke up, fixated, for the second day in a row, on the fact
that she had already run out of bathroom passes for the first
quarter. She has gone to her locker or the bathroom 5 times
during Literacy since school began and her “passport” for
going to the restroom is now all stamped; if she has to go before
November, she is now out of luck. Time, for Nadia, is not yet a
concrete concept. She doesn’t plan ahead well, except for her
exuberant general anticipation of exciting future events, but
during breakfast, she decides not to have any milk because she
doesn’t want to have to use the restroom and she’s not sure
when her Literacy block is. I wonder if perhaps she went to the
bathroom during reading because she needed break, as reading is
excruciating for her at home, me begging her to read silently,
her begging me to “partner read,” where I read three pages
and she reads one. She takes frequent breaks at home during
reading, never quite gaining the stamina to read independently
for even 20 minutes at a solid chunk without a reminder to focus,
to READ. I tell Nadia that she doesn’t have to worry about
drinking her milk with breakfast, that I’m sure her teacher
will be flexible about passes, because it is still the first
month of school, and literacy is in the afternoon. In the back
of my mind, I’m wondering if her teacher remembers the part in
her IEP about Nadia having one kidney and her chronic bowel
difficulties that have required medication since she was a
toddler. I need my kiddo with one kidney restricting fluids like
I need a hole in the head, but I’ve just emailed her teacher
about something else, so I contemplate if I should wait a day.

Nadia finishes breakfast, sans milk, and heads upstairs to brush
her teeth, but she soon yells down that she wants to change to
pants and a long-sleeved Packer shirt, even though it is
forecasted to be nearly 80 degrees. I tell her that she might be
hot and she yells back that she doesn’t care, she wants pants
because a new “friend” keeps asking her about her (psoriasis)
patches on her legs and elbows and that makes her sad, so she
doesn’t want them to show. We debate about whether 80 is
actually hot out, Nadia’s lack of number sense causing her to
be uncertain if a high number means warm and her 10-year old sass
debating my parental input. I feel myself getting flushed, but I
decide to pick another battle, because I know that there are mini
battles yet to come before the bus pulls up. So she’s hot, I
tell myself, it could be worse and I could get steaming mad.
Nadia still has to put on her steroids when she comes downstairs
to help her angry skin settle down after an inexplicable flare of
psoriasis and I know she dreads that part of the morning. She
still has to gently brush her hair, tenderly avoiding the swollen
bumps where the raw patches on her scalp have been bleeding and
itching. She will have to be careful when we put on her socks
and shoes, because her toenails and heel are peeling and sore.
Thank goodness Nadia is a morning person and up at the crack of
dawn, I tell myself, because at least we aren’t rushed when she
has to do her morning “routine.”

Nadia is finally ready and out the door and she yells “I love
you,” ten times from the end of our driveway. She is dancing
and chatting, swinging her flute and grabbing our dog’s face
between her hands, leaning in to whisper to him and give him an
eskimo kiss. She looks like a happy 5th grader and for a few
minutes, my mind calms. The bus pulls up and the door swings
open and Nadia grabs the bar by the step to manage the huge step
onto the bus, her incredibly small frame no match for the mammoth
bus. I see her plop into a seat with a pal and I turn away as the
bus roars up our hill, almost drowning out my worries.

Nadia was so excited for school to start that we were in Target
in July, when the Back to School display had just been assembled,
buying everything on her school list as she highlighted and
checked off each item with unbridled excitement. Her enthusiasm
ended the first week of school, despite meetings with her teacher
and nurse before school started, a transition meeting last
spring, health plans in place, and that bulky IEP of hers, worthy
of a hard cover. An assigned gym locker that was so high she
couldn’t reach the lock, a resource room for math pull out that
should have had her alternate curriculum and a math teacher ready
to go and instead had calendar time and no math information from
the elementary school, day after day, books and social studies
she can read but doesn’t understand, new faces asking why she
is so short, classmates wanting to know why she gets “pulled”
for speech and math and a confusing new middle school schedule
that includes switching classmates and classes four times a day.
My concerns pile on top of the litany of Nadia’s transition
woes; the transition with multiple teachers and new classmates
every time she switches classes presents a new challenge as her
advocate, with germs and new teachers galore and yet an empty
assignment notebook and backpack that come home every day.

So, I do what I can. While Nadia was at school, I called to
schedule her flu shot, a small firewall against the impending
season of sickness for my daughter with a significantly
compromised immune system. I called the eye doctor because she
says her glasses hurt her eyes and she now refuses to take them
out of her bag. I called the pediatrician because I read that
hypocalcemia could cause her psoriasis and we are overdue on
other labs, so I wanted to combine the labs so she would only
have one blood draw. I called the dermatologist to say that even
though we are faithfully doing her daily light treatments in our
light machine in the basement, her skin is now a daily struggle,
her immune system waging an unnecessary fight when it should be
saving its precious resources for the petri dish of school.
Check. Check. Check.

Then, I went about my day and waited to see how her day went when
she gets off the bus at 4. I think that perhaps she will have the
worksheets and homework she wanted in math, to be like her peers.
Even better, perhaps something that resembles her IEP math goals.
I think that perhaps she will have a book come home from school,
so she will be inspired to read something and I will be assured
it is at her level. I hope that her assignment notebook will
tell me something about her day, because so far my emails and
phone calls with concerns have not been returned. Her teachers
and special educators are, for the first time in 5 years, not
people I know and the system in middle school doesn’t seem to
favor parent involvement. My desire to know how to help Nadia is
now feeling like I am a viewed as a middle school helicopter
parent. The truth is that I suddenly feel more like a
hovercraft, hovering above the scene, not close enough to see
what exactly is going on and not getting any reports back from
ground level.

Nadia comes home with her backpack heavy and looks chipper,
chatting about recess and gym. Whew. As she inhales her snack, I
unload her folder and her social studies book. My heart sinks as
I ask her what her assignment is for social studies and she says
that she thought the large packet was on a movie they watched,
but maybe it is in the book. She looks unconcerned, but after it
takes 75 minutes for us to answer questions on two of the eight
pages (that cover 35 pages of a 5th grade social studies unit on
Explorers, a word I find out she doesn’t yet understand) she is
exhausted and I am leading the witness. On every single question.
On every single page. I wonder what part of this is modified
“to fit Nadia’s current academic needs”...why she says she
couldn’t hear the video because she sits in the back in that
class when she has preferential seating in her IEP to accommodate
her loss of hearing. I pack up her folder and write a note in
her unused daily planner to the teacher, explaining, again, that
we need to chat. I look at my daughter, who is now happily
singing Frozen with her earbuds dangling from her iPad, and ask
her if she’s hanging in there; the irony in her response after
years of sanitizing our way through elementary school to keep her
healthy enough to attend, sums up the transition perfectly. “I
really hope I’m sick tomorrow.”