By Darrah Le Montre
You may be surprised to hear that one of the most difficult parts of having a child with special needs has nothing to do with your child. It has to do with how other people respond to your child and the affectations and manifestations of their condition.
My daughter Daisy is three-and-a-half years old and has a rare syndrome called Coffin-Siris Syndrome. Since 1970, when it was discovered, only 140 documented cases of CSS exist in medical journals. Two doctors, who named the disease after themselves, discovered CSS. (With a name like Coffin, it’s a surprise Dr. Coffin got into medicine! But he did, and he discovered two other genetic disorders.) I’m still learning the ins and outs of my daughter’s condition, but suffice it to say, I have become the world’s leading expert on all things Daisy-related, both having to do with CSS, and beyond.
Something I noticed right away was that strangers often commented on her “milestones” and asked me intrusively—sometimes in the panty aisle of Target—whether she’d met them.
“How old is she?” They’d often start. “Has she started walking yet?” They’d continue. “What was her first word?”
You may have heard the saying “not all disabilities are visible.” Like many things in life, my daughter’s disability is a gray area. Some things show, some things don’t reveal themselves as bluntly. She is petite in stature, she has low muscle tone, and she has delayed speech, feeding and cognitive ability. But, with a full head of curly brown hair and big darling Disney eyes, she is akin to a living doll. Many of her problems are not visible to the untrained eye. And some of them are simply perplexing to those who have no experience with special needs people.
Answering curious or intrusive questions from strangers has caused me many moments of anxiety and, as I stand, perplexed and not wanting to be rude, I end up repeating stock answers of avoidance. Then just go to bed early that night, not wanting to deal with the truths around me. Those truths have nothing to do with my daughter. They have to do with that whole co-existing thing.
I found it to be a gigantic relief to submerge myself in the CHLA community here in Los Angeles. At Children’s Hospital Los Angeles, nobody asks you what’s wrong with your kid. They don’t stare; they don’t let their eyes dart back and forth when they see you feeding your cub baby food at well past the age a child “should” be eating from a jar. They don’t interrupt your routines with a conciliatory laugh to ask if your daughter understands the cartoons she’s watching.
They don’t examine your kid from head to toe and ask why her left foot turns in when she walks and she seems to stumble more than a kid her age would. They don’t shout at her over and over when she doesn’t answer to her name the first time.
Yet, in the outside world, which I don’t view as particularly cruel, people feel comfortable and entitled to do all of the examples above.
I am not a defensive person by nature, and the only times I’ve really lost my cool are when people have crossed boundaries that I would consider violating whether I had a typically-developing child or not. Such as, when a woman pushed my daughter’s stroller—while my daughter was in it—into a wall to get over to the teething necklaces in an upscale-boutique in Century City. Yes, I lost my shit. Sometimes I really feel like screaming into a bucket of ice water.
Instead, I rally behind other special parents. I volunteer at my daughter’s inclusionary school, where special needs children and typically developing children learn side-by-side without interruption or segregation. I started an online forum for other local parents who need to vent, or ask questions or post event flyers to unite the community.
CSS exists under the umbrella of rare diseases. So, there is little funding going into finding a cure. I recently found out that my daughter has a 50% chance of passing along her condition to her child. The head of Genetics at a top hospital went into detail about how my daughter could choose a number of special processes to parse out the embryos that carried CSS.
It struck me as quite Gattaca-like. The blessing of my daughter is bountiful and she has changed my life in more ways that I can count. Could this brave new world of science prevent us from enjoying life to the fullest because of our devotion to “normalcy”? Could the spiritual benefits that come with being of service to another human being also be parsed out into oblivion?
Had I known ahead of time the struggles we would face, there is no question in my mind whether or not I would have had my daughter. I absolutely would and I would do it over again in a heartbeat. While the test for CSS is complicated and difficult to get, now that she’s had it, the power of knowledge works in our favor. We know the ‘why’s’ and the ‘what to expects.’ But, the diagnosis wouldn’t have changed any outcomes for me had the information come sooner.
So the idea that she could prevent herself from having a baby with CSS—when doing just that gave me the biggest, most profound blessing of my life—is unnerving to say the least.
However, she is not as able-bodied and able-minded now as I am. Whether she will be in the future remains to be seen. And whether she chooses not to shoulder the extra work will be up to her. That choice is hers. I will have zero judgment surrounding it.
All I can do today is to be a beacon of light reflecting her joyful inner fire. All I can do today is give her everything she needs emotionally, physically and spiritually that is in my power. All I can do today is support her wants and desires to the best of my ability. I can listen to her in a unique way that only a mother can, and that only a mother of a non-verbal child can. I can intuit her needs and find ways to connect and communicate which allow us to get through the day making her feel most comfortable and most safe.
And to hell with the rest of the onlookers! Unless they want to know about my daughter’s perennially harmonious spirit or her infectious giggle or the way that music and books inspire her, then they really aren’t bringing much to the conversation. And Daisy and I got places to go and a community to build! And that’s the advice I would give any person, anywhere, who faces other human beings who choose to focus on only your perceived shortcomings. Normalcy is overrated. Just ask any genius.
Darrah Le Montre is a writer, devoted single mom and student at UCI. Her work has been published by Marie Claire, Cosmopolitan, The Fix and SuicideGirls, among others. She’s obsessed with Cracker Barrel biscuits, country music and all things Southern. Join her monthly e-newsletter Darrah’s Club!
Follow Your Bliss…xoxo