When a child with special needs comes into your life, frequently you’ll hear people say life or God doesn’t give you anything you can’t handle. You may also hear “you’re so strong and an amazing mom; this child was given to you for a reason.” It’s not a helpful phrase to hear because as the years go by, you’ll often feel like you’re really not that strong – and it’s definitely more than you can handle.
The meltdowns and the sleepless nights will pile up. The behavior-modification plan will go awry, and the experimental dietary restrictions will slide. Years of toilet training will feel quite similar to banging your head repeatedly against a stone wall. You will lose perspective, and you will think you are a crap mom because you’ve been told life doesn’t give you anything you can’t handle. And then one day you will hear your daughter’s young therapist say to you: “I have a new idea.” And you will look up and notice the small army gathered around you working to help your child – and you will realize what life gives you is people.
In my daughter’s 13 years these people have appeared in a variety of forms. When Erin was a baby, before we learned of her disability, we had a sitter named Mary Lynn who remained undeterred by Erin’s failure to meet fine and gross motor milestones. Sensing my growing concern, Mary Lynn would smile and announce almost on a daily basis: “Next month she will walk!” Her enthusiasm kept me from dwelling and hopeful for Erin’s development and later, for the development of my unborn son. I went on to have a healthy second pregnancy. Will was born when Erin was 16 months old – and I credit Mary Lynn very much for that. We moved back to New York shortly after Will’s birth, and though we stayed in sporadic touch for a while, I feel I never got to thank Mary Lynn enough for how she helped me during that uncertain first year of being a mom.
Just before Erin turned 2 she was diagnosed with an autistic spectrum disorder, and we were catapulted officially into the special needs world. Early Intervention sent a consistent flow of young therapists eager to sort out Erin’s sensory issues, strengthen her muscle tone and motor skills, increase her ability to attend and focus and help her learn to communicate. After about a year of trial and error with different approaches and people, a small and consistent team formed and rallied around us. Nadine, Arlene, Jackie and Jill — they served as Erin’s therapists but also as my touchstones about everything related to Erin and eventually her brothers. Parenting a child with special needs can be an isolating experience. In those early days when new moms gather for coffee and companionship, I relied on these women who arrived on a daily basis with bags full of books and games and strategies and deep wells of enthusiasm and engagement for both of us. They knew and cared for Erin intimately and were among the only people who could relate to a harrowing trip to the children’s shoe store or the impending stress of a holiday party. It’s trite but true — with them I laughed and cried and learned how best to parent my daughter. Though I will never stop trying, I can never thank them enough.
While most of Erin’s army has been comprised of therapists and doctors and other specialists, a rare few have been civilians – other moms. After several years of exclusive in-home therapy, as Erin’s skill set grew, her team agreed that some monitored play dates with typical kids – beyond her brother — would be beneficial. At first the thought of brokering this with other mothers was daunting, to say the least. In New York City it’s safe to say that kids and parents even at the pre-school level are looking to move and play up, not necessarily down. Erin was prone to biting, scratching and throwing herself on the floor in fits of frustration. An ideal or highly sought after playdate she was not. She was not the last kid to be picked; she never even made the lineup. And as moms tend to be, I was protective of her and her brother — and to a certain extent the other kids –who attended the same school. I didn’t float the idea past anyone until her second year at the school – and then so very gingerly – gauging reactions at school events or in passing on the street. If someone asked more than two questions about Erin – they were playdate potential. As a mom of a special needs child, you’re not looking for sympathy. That’s the last thing you want, need or have time for. What you do want for your kid is a chance – someone willing to take a risk. In Erin’s three years at her pre-school there were four kids who came home to play with her and four moms who took the risk of having their kids “play down” — Jenny, Francesca, Anastasia and Allison. Four moms who took the time to take a chance on another kid and a mom who didn’t have much to offer – aside from a bottomless well of thanks.
The gratitude a parent feels for a person who takes the time to appreciate and help your child (typical or otherwise) truly knows no bounds. In the years since we moved from the city we’ve transitioned to a new team whose members we rely on to help Erin’s language, motor and social skills continue to evolve. Her weeks’ highlights include speech with Roanne, occupational therapy with Debra, physical training with Aresh, music with Angeline – and countless walks to the library with Michelle. Even a trip to our kind and gentle pediatrician, Dr. Hahm, elicits smiles from Erin.
And finally — no weekend is complete without a trip next door to see our neighbors, Karen and Tom, who welcome Erin as joyfully as they do their own children. As they and their kids — Catherine, Tommy, Annie and Gracie — greet her with bear hugs and extend invitations to share their books or bake brownies, Erin claps her hands in delight and suddenly life feels lighter. There are no advanced degrees or specialized training required to be a friend to a child with special needs – just a big heart and a person willing to open their door. This is not easily found. There are no adequate words of thanks.
It is no easy journey – no parent expects it to be – but then there are the people who appear and offer you and your child their time, their understanding, their expertise, their patience, their optimism and their love – and while it takes your breath away, it also builds you up. Gradually you feel that maybe you can handle it and, who knows, even take a stab at being that amazing mom – all thanks to them – the people that life or God give you along the way.
For all of November, The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to [email protected].
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.