The Trouble With Transitions

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 a 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 hardcover. 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 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.”

I am a stay-at-home mom to two kids. My daughter Nadia, now a 5th grade middle schooler, has 22Q, and is an inspiration to our family every single day. Despite challenges and tricky transitions, she has extraordinary joy and strength and we do our best to advocate for her so that she can continue to rock this world! Never an easy path, navigating school with a child who has special needs involves teamwork, patience and the courage to speak up for our little fighter.