I read this exquisite piece by Sheri Dacon on the very particular grief that comes with having a special needs child. I hope that when I see a child with the facial features of Down Syndrome or the electric wheelchair that indicates some sort of mobility challenge, both the child and her parent see my smile as genuine, not strained and feel seen, not ogled.
I read a list of special needs parent characteristics that Marissa shared on Facebook, and was moved to tears by numbers 18 and 19:
- Your biggest fear is your child will outlive you.
- Your second biggest fear is he/she won’t.
What must it be like to fear or know that your child will never be self-sufficient? I felt it for a very short time. For a few months, early in my daughters’ lives, I felt the fear that I would have to bury my child. I wouldn’t wish that on anyone. Later, I feared that she would never be able to care for herself. I wouldn’t wish that on anyone either. But we’re past that now. M is doing great.
I’m Not a Special Needs Parent
Certainly, like every other responsible parent, I have a will that specifies who should care for my children if I die while they are still young and life insurance to minimize any financial burden on their care providers. I don’t, however, worry about their long-term wellbeing. Barring some unforeseen tragedy, both my children will be able to provide for themselves beyond high school. At age 7, they’re already talking about college, planning to get an apartment together as upperclassmen so they can have pets.
Compared to the parents I mentioned above, I am not a special needs parent. Not even close. The closest my kids come to being having special needs is in needing to be treated as intellectually well beyond their years while being emotionally and socially still just 7. J’s concern that it’s “rather risky, don’t you think?” for her father to mail her health insurance cards deserves a complete answer. Her question about the similarities between the recent Great Recession and the historic Great Depression, inspired by the Kit Kittredge books, required a nuanced response. I need to warn M to be careful about sharing her enthusiasm for the Fibonacci series because it might be perceived as bragging. These were just three topics that came up in the hour before I wrote this paragraph. My girls keep me and their teachers on our toes.
But I Am a Special Needs Parent
There are other measures, though, by which I am very much a special needs parent. We weren’t always so certain that my daughter M’s birth defect wouldn’t affect her life expectancy.
When the principal calls me into her office to discuss how children at school are teasing my child for her appearance, I am a special needs parents.
When my child’s teacher reads her whole class the beautiful book Wonder to help them have compassion for her, I am a special needs parent.
When I need to discuss with my 7-year-old whether she wants corrective surgery, I am a special needs parent.
When I ignore the stares of others because my daughter is panicking at the sight of a grocery store mascot or ballet dancer, I am a special needs parent.
I Fall In Between
My family is not shaped by M’s particular challenges. I do not have a severely disabled child. Nor are my children typical. M’s frontonasal dysplasia isn’t something I can afford to ignore. My daughters’ extreme intelligence is a parenting challenge.
I don’t pretend to understand the life-altering realities of families further down the special needs continuum. Nor should parents with neurotypical children or those whose appearance falls within our societal norms think they understand my reality.
There are things in my life that are hard for me. I can look around and see what appear to be easier lives and those that are much, much harder. Compassion beats comparison. “Hard is not relative,” says Ash Beckham around 3:40 in the video below, “Hard is hard.”
What’s the hard thing in your life? Do you feel guilty for finding it hard?
Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.