A Journey of Hypotonia and Hope and Everything In Between
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Sunday, August 21, 2016
A Letter to the Teacher of My Typically Developing Child
As another school year begins, I know you are busy preparing your classroom, mapping out lessons, attending faculty meetings and anticipating the new faces that will enter your classroom and your life. It is a busy time and a little overwhelming and so very exciting — for you, for the kids, and for parents like me.
Ever since my youngest daughter entered day care, I have always composed a letter to her teacher. It is detailed and has probably garnered its fair share of eye rolls and sighs. It explains — in no particular order — how and when to put on and take off my daughter’s SMOs, how to handle her meltdowns from sensory overload, how her hypotonia often makes tasks like writing her name and keeping up with the other students in the hallway a struggle, how when presented with something she knows will be a challenge for her muscles, she will sometimes shutdown.
I feel like I must write that letter. Every. Single. Year. That letter is easy to write. I have most of the answers. I know what the end goal is. I understand the journey we are on. I write that letter to make the teacher’s life a little bit easier. To make my daughter’s day at school a little bit brighter. And to make my time away from her a little bit more manageable. But, there is one letter I have never written until today, and it is this letter to you. A letter to my oldest daughter’s teacher.
In a few short days, my daughter, L, will be stepping into your classroom for the first time, and I know upon meeting her, you will notice the obvious:
L truly loves learning. This summer, she spent many days at our local library devouring book after book. “I want to make sure I check out at least one fiction and non-fiction book each time to keep my reading balanced,” she told me one day. And she did. When she wasn’t reading, she was participating in a Young Author’s Club. She penned an R.L. Stein inspired short story infused with flashbacks and allusions and cliffhangers and dialogue. L revised the piece five times. She’s a perfectionist and a hard worker.
You will easily see that she has a big heart and is constantly going out of her way to take care of the people around her, to make sure everyone is included, to lift up people who are feeling down. She will eagerly volunteer to help you pass out papers and she will happily help her classmates without being asked (but with your permission, because she is also a big rule follower.)
Within a week or two, you will probably pick up on the fact that she is not a fan of math, but she can do the work. That she approaches difficult tasks with a positive, “can-do” attitude. That she loves music class and drawing and science experiments, and that when given the choice to dance in P.E. class or walk laps, she will always pick to walk laps. Always.
You will recognize she makes friends easily, she always brings her lunch and she still thinks boys may possibly have cooties. (I am okay with this. Her father and I have decided she can date when she is married and 35.)
But, I am not worried about what you may see on this journey. I want you to know what you may not always see.
As you have already read, L’s younger sister has special needs. In the perfect world, that would mean absolutely nothing. It would mean that L hasn’t had to frequent the offices of various specialists — Genetics, Neuro, Caridology, to name a few. It would mean she has never waited patiently for two hours a week while her sister goes to Occupational and Physical Therapy. It would mean she has never sat in the car with me, following an ambulance as it rushed her sister to the PICU for a lengthy stay. It would mean she has never seen her sister made fun of or ignored because she was “different.”
Unfortunately, ours is not a perfect world. L has experienced all of these things and more. While it pains me to write that, I also know that these experiences have shaped her into the beautiful soul she is.
L is a patient and considerate individual. She knows the power of an “inchstone.” She has waited patiently as her sister slowly learned to crawl and walk and run. She holds her sister’s hand, mindful of slowing her pace, as they walk together so her sister can keep up. L is a compassionate and accepting individual. She has witnessed — firsthand– the hurt that comes from being left out and how good it feels to bring others in. She believes that beauty exists in our differences. L is a nurturing and strong individual because she often feels it is her responsibility to protect her sister from the cruelties of the world, to help her, to keep her safe, to stand up for her. Like many other siblings of children with special needs, L knows more about sacrifice than I wish she did, but she also knows about the power of unconditional love.
I want you to know that sometimes, she worries about her sister — that she might get hurt and never be able to walk again. Some nights, L cries, fearful that the next time her sister gets sick, there will be another hospital stay. While at school, L is afraid that her sister will go back to the hospital and never come home again. At bedtime, she prays for her sister’s muscles to grow stronger and to stay strong.
And I do my best to reassure her. I hold her. I wipe away her tears. I listen. I pray too. But I am not perfect. I am still learning how to parent two extremely different children — one who constantly needs me and one who deserves more of me.
I don’t have a list of instructions with this letter, because I don’t have any answers. I am navigating murky waters on an uncharted journey. And I know you have many students, all with diverse needs that you are expected to meet every day. And I know you don’t get to pick which students you want and what homes they come from and what experiences they have lived through. So, I write this letter to simply say “thank you.” I know this is a journey you didn’t necessarily sign up for, but I already feel better knowing you are traveling these waters with me.