Monday, February 10, 2020
Juggling a child with disabilities and your other kids, too
This is a guest post by Leah Moore, a high school English teacher. She is a mom of three, including twin boys and a daughter with Cri Dru Chat, a rare chromosomal disorder. Leah blogs at Loving You Big; her writing has been featured on Scary Mommy, Erma Bombeck Humor Writers and The Mighty, among others. Her short documentary about Cri Dru Chat has been raising awareness about the syndrome. The following is an excerpt from her first book, which she is working on publishing.
I was cutting the last of the grapes into fourths, when I shooed away a familiar feeling. My daughter has once again bitten me in the butt. Sharp teeth against denim.
I’m not sure what is more unnerving: that I was bitten or that it doesn’t phase me anymore. It has become the norm. Her mouth is the exact height of my derriere, she has learned biting doesn’t hurt me, and it immediately makes her needs known. I can tell she is about to lose it. Her usually sweet disposition will soon be replaced by a shrieking stranger. I have had seven years of practice to anticipate these breakdowns since the addition of a new word to our household. Cri Du Chat. In French, it means "Cry of the Cat." In medical school, it is a deletion of the fifth chromosome. In the doctor’s office, it means tracking microcephaly to accurately measure head growth. At my kitchen table, it means my daughter.
The diagnosis, first discovered by French geneticist Jerome Lejeune in 1963, occurs in 1 in 50,000 births. However, her “unremarkable birth,” a term used when nothing medically abnormal occurs during delivery, suggested we were not in this exclusive group. Yes, she needed surgery to correct a birth defect and she was choking in the nursery, but we were assured it was nothing out of the ordinary. We were new parents, everything was out of the ordinary.
At six months old, I thought it was cute when a woman at the airport asked me if I was holding a kitten wrapped in a blanket. "That’s just her little cry," I remarked, never possibly knowing the "cat-like cry" was the French translation of the syndrome. I also couldn’t have known this curly haired giggle monster, heading to visit her Grandparents, was also facing a future of hypotonia, lack of self regulatory behavior, and severe intellectual and physical delays.
When my eleventh-month old daughter was at the same developmental milestones as a newborn, we increased the early intervention and sought answers.
On the way home from the geneticist’s office, after hearing the news, "It is Cri Du Chat. We don’t know if she will ever walk or talk," I had to pull the car over to cry. When I looked into the rearview mirror, I saw my daughter looking at me, laughing. She probably thought Mommy looked very silly. In that moment, when my greatest fears were realized, I just needed to look at her. She was exactly the same. The chubby-faced baby I carried into the doctor’s office was the same one who came out. She would still need dinner when we got home and curl up on my lap to read Goodnight Moon before bedtime. The world of tummy time, play dates, and birthday parties were replaced with forty hours of therapy, year round schooling, and fear. Would I be able to keep her safe? Would our marriage handle this stress? Would we be able to provide for her?
I recalibrated what motherhood looked like. I became her advocate. I received formal training to put my "oxygen mask on first," I filled my world with the strongest support systems, sought the best educational placements, and interviewed the most knowledgeable doctors. I learned to speak aloud what others only feel in silence; it is possible to find a balance of heartache and happiness within the same home.
My attention turns to the frustrated face before me. I de-escalate the situation by handing her a perfectly cut bowl of grapes and she meets the calm in my voice with the gratitude in hers. As I turn back to the kitchen counter, I feel another bite.
I pull back, this time, not facing my seven-year-old daughter with special needs, but my two-year old son. He’s standing there smiling, holding out a bowl, waiting for his portion.
I use my formal parenting voice: "We don’t bite."
"Ok. Grapes, please."
Next week. Same butt. Different son.
"We don’t bite."
"Ok. Grapes, please."
There is a ripple effect of raising a special needs child. All this time, I was concerned about managing my daughter’s behaviors, I never realized her twin brothers were watching, studying, learning. They did not see her limitations, only her actions. They didn’t know how incredible it was that she learned to stand independently at the counter or that her yelling at me was something I only dreamed of hearing one day. In some cases, I condoned behaviors that would otherwise be unsuitable, and my sons would learn those behaviors too. If she received a bowl of grapes by biting, they would too. They weren’t acting out. They thought this was the way things were run around here—"No please, no thank you, just bite."
My husband and I are raising a child with special needs and two little parrots. Our home is not defined by our daughter’s diagnosis. It is defined by palpable joy you feel upon entering, knowing the children are practicing kindness, empathy, and perpetual toilet training. We give our sons language to understand their sister sometimes needs more help. They will live with her diagnosis everyday of their lives. She will one day go from their big sister to the sibling that needs a caretaker. She will be their responsibility to care for. That is a lot of pressure to put on two boys in diapers. So, for now, we just enjoy being a family.
When she is too fatigued to leave the children’s museum, her brothers will stop and attempt to carry her to the door with their thirty pound bodies.
When it’s time for her nightly medicine, she calls for her "doctor brothers" who enthusiastically administer the syringe and milk.
When we go to the grocery store, she makes sure they are safely in the cart while she gets to push the cart and dance beside them.
When one of the boys gets a shot, she holds their hand and whispers, "I will help you."
When we go to the park, even though they are running at different speeds, they all play tag together.
Yes, our boys are being raised with a sister that may need more than they do. There are days they will not get the same amount of attention; there are also days the boys will get more. Her life will interrupt the stereotypes that surround disabilities. She is a not a burden. We are not sad. Her life creates joy and her diagnosis begets advocacy. We are raising three very different children and we will define our parenting successes by them knowing they are each seen as the individuals they are.
Yes, we live in a home where unusual occurrences are usual for us. Most people are not ending the day with teeth marks in their rear, but most people are also not ending the day with a dance party where all five members of the family are wearing matching wigs. These are the nights I am most grateful my sons are watching.