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Are you in the Sisterhood of Special Needs Parents?
Have you ever heard any of the following?
How do you do it?
I don’t think I could do it.
I don’t know what I would do in your shoes.
These are a common refrain from the parents of my son’s mainstreamed peers.
What is your experience?
What is hardest for you?
How do you maintain your quality of life?
These are the questions I find myself asking my fellow special needs moms.
Being the parent of a child – or adult – with special needs is sometimes framed as being a superhero. But other times, it can be incredibly isolating.
But like it or not, we all belong to a club we didn’t sign up for. We’re on a team we didn’t try out for. We’re starring in a show we didn’t audition for.
Visibility
I’m on the plane and a mom apologizes for her daughter’s toy rolling across the aisle into my space. I look down and notice her wide set eyes, and slightly flattened facial features. It is clear her daughter has Down Syndrome. I return the toy, but also let her know that, though he is not traveling with me on that day, my own special needs child often does much worse on an airplane than tossing a toy across the aisle.
How does she do with flying?, I ask.
Not bad, though she struggles with the sensory overload of the security lines.
Have you ever called TSA Cares?
I refer her to my blog post, and encourage her to call. I explain how it helps my son doubly, as his is an invisible disability. It’s true, she agrees, that even though her daughter has fewer challenges in the airport than my son, her distinctive appearance goes a long way in letting those around her that she is not “spoiled” or that her mom is an “ineffective parent.”
Lifespan
Another friend has a child with an extremely rare, physically debilitating condition. At just under five years of age, he has already outlived some estimations of his lifespan.
While we grapple frequently with what will happen to Mr. Diggy after we can no longer care for him, his physical strength and health mean that we have virtually no medical concerns in our day-to-day caring for him. She, on the other hand, has a roster of medical tasks that consume her daily routine, and also has to grapple with the reality that she will almost certainly outlive her child.
Perspective
What is hard for your family may be easier than you think for another family, and vice versa. A challenge we face often is Mr. Diggy’s high level of mobility – it creates heart stopping moments as he balances on top of the piano, swats at spinning ceiling fans, and darts into the street.
So while this is a huge challenge, we have relatively few issues with his diet. He eats heartily and often, and a relatively healthy mix of foods. Conversely, parenting a child with a physical challenge may mean feeding tubes and pureeing everything, but having zero concerns about your child running into traffic.
The Same, Yet Different
So here’s to all the special parents out there – no matter what challenges your family is facing, the universal truth is that there is no one to face them in your home, except you. As you put one foot in front of the other and manage each moment, take solace in knowing you are not alone. You are a lifetime member of the Sisterhood of Special Needs Parents. We’re here for you.
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Related Posts:
The Autism Sibling: Autism Mom Perspectives
Special Needs Vacations: 3 Ways to Find Peace of Mind
