Nevertheless, She Persisted

My “Parent Homework Assignment” for my disabled daughter

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Hi Ms. Kenner,

My name is A.J. Kay and I am Matty Kay’s Mama.

Thank you for taking the time to learn about my girl. She can be a tough nut to crack and it’s impossible to understand her if you don’t know her history.

You will notice immediately that Matty loves to challenge herself and will not accept that anything is impossible. It’s both a strength and a weakness. Her need to be “right” can interfere with her ability to affect a successful outcome and I’ve seen her choose suffering over an admission that she doesn’t know something. We work on getting okay with imperfection in all areas of her life and internalizing that every “failure” is an opportunity to learn. It remains a struggle for her but, like all of us, she’s a work in progress.

And she’s got a solid reason for being this way.

Matty was a preemie, born 7 weeks early. Her little body fought hard to stay alive in her first two years and I think her brain remembers the struggle on some level. Her experience taught her that if she wants to remain in the world — to see the sights and do the things — she has to be willing to fight.

And vulnerability feels like death to her.

She was diagnosed with cerebral palsy (CP) at 8 months old when she began exhibiting pretty significant developmental delays. Since then, she has endured surgeries, G-tubes, hospital stays, and leg braces. There was even a point when her doctors weren’t convinced that she’d ever be able to walk — let alone run — let alone ride a bike — and a scooter — and play soccer — and teach herself to do a cartwheel — which are all things she can do now. She has an hour of PT and OT per week to keep her muscles loose and strong, for which she will need to leave a half an hour early every Friday, but the benefits of her continuing therapy far outweigh the minimal lost instructional time. And while her body continues to need additional support, her cognition is fully intact.

Keeping that history in mind, perhaps it makes sense that I believe that her tenacity — the reason she developed far beyond anyone’s expectations — is an acquired survival skill.

Academically, she is “twice exceptional”, which I assume you know means simultaneously “gifted” and “learning disabled”. Her mental math skills are extraordinary. She executes quick mental calculations and can perform operations that she has never been formally taught and she revels in her numerical ability. It’s a source of confidence and pride.

Reading and writing are less rewarding. Despite testing in the 95% percentile for verbal ability, she has an IEP for an SLD in Reading (specifically fluency, I think) and writing is a struggle because, due to the CP, her motor planning and coordination are both poor. It's important that you know that she will always be the last to finish an assignment in class. She will always need extra time. She will always move her writing arm like she is underwater. And she will never accept accommodations for her deficits. Ideally, you’ll allow her to fight through the challenge, whatever it may be, and not draw attention to her disability.

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Photo cred — Unsplash

Matty doesn’t like to be “different” or set apart from her classmates, so any references to deficiencies generally aren’t well-received. When she was offered, for example, extra time to read a passage or a slanted surface to write on (to reduce the strain on her hand muscles) at her former school, she would decline even though it would make the task easier.

Socially, Matty loves being with friends and has really incredible interpersonal skills. She is a pack animal. She happiest when surrounded by and interacting with people but struggles with telling teachers or admin if she is having a problem with other students, I think because she fears rejection, which also has roots in her fear of being “different”. Last year, for example, she was slapped in the face by a classmate and she didn’t tell her teacher for two days. She needs to learn to speak up in those cases and it is another thing I am working on with her at home. Understandably, Matty sees self-advocacy as a form of weakness — as if asking for help is an admission that she needs help — and being in need of help shows up for her an existential crisis.

The last couple of years of Matty’s life have been challenging for her emotionally. Nevertheless, like everything else with Matty, she persists. Her dad moved out of our home in November of 2016 and we were officially divorced a year later, 9 months ago. We sold our house in July and moved from a huge McMansion on a cul-de-sac in the suburbs into a modern, 4th-floor loft apartment that is a quarter of the size, here in the city.

As I’m sure you are well aware as a teacher, kids can say some pretty insightful things. After we moved, Matty was sitting in our new living room with her sisters and I and, without looking up from her book, said, “Mama, I don’t think our new house is too small at all. I think our old house was too big.”

She was so right.

Matty is my youngest and you can tell when interacting with her, that she has older sisters. She’s precocious in a lot of ways. A mom at a birthday party once said to me, “Does Matty have big sisters? I was guessing she did because she was telling Mia how good the new Kesha album is and Mia still listens to Radio Disney. I knew because I was that kid, too.

Her dad has visitation every other weekend. I want to offer the kind of details that can be useful, but you would ever ask: Her dad and I were married 17 years, Matty and her three sisters all have the same mom and dad, and the divorce was not pretty. He and I have shared legal decision-making authority, but his visitation is limited and he is not permitted to remove her (or any of our daughters) from school. The court paperwork is on file with the office.

The final thing I will mention, and it’s a really important one, is that Matty glows like a rainbow when given affection and verbal praise. It’s her sunshine. She has gotten “Student of the Month” every year since kindergarten and she works really hard to please the adults around her. She wants to do things well and do them right and follow the rules and please the people in her life. She has the sweetest soul and biggest heart and I may be (definitely am) biased but I think that she brings so much light and love to the world around her.

My expectations for this year are that she will do her best and be safe and nurtured, academically and socially, and that she will find a happy home-away-from-home at her new school with people who are willing to love her and open to being loved by her.

Thank you so much for allowing me to fill you in on my Matty. Please don’t ever hesitate to reach out with any questions or concerns or just to let me know how she is doing. And thank you, from the bottom of my heart, for being her teacher. The enormity of the work you do, on and off the clock, cannot be overstated.

Sincerely,

A.J. Kay

Mama, writer, lover, fighter — I wear my heart on my sleeve because my pants pockets are too small. www.ajkaywriter.com

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