One day, when I was feeling particularly sad and alone, I googled “special needs parents” and “mental health.” I wasn’t surprised to find a body of research focusing on how special needs parents struggle with depression, anxiety, grief, and a host of other negative emotions. I also wasn’t shocked to discover that, compared with parents of typically developing children, special needs parents score lower in nearly every area measured by the research. Every area but one, that is. Apparently, the only advantage we have over our peers is in the realm of family cohesion.
After reading the research, I felt a little less sad and a lot less alone. Because if you’re going to have something going for you, I figured, a close and connected family is a pretty great option. What better resource is there than a network of people who care about you and want to help?
Time and time again, I have come across stories of special needs families that function because of strong family ties and organically created networks of caregivers. Often, it’s the grandparents who end up helping the most. At an age when they should be enjoying a quiet retirement, these are people in their sixties, seventies, and even eighties who do things like watch their adult grandchildren overnight, drive long distances to medical appointments, and learn to operate unfamiliar and complex medical equipment. Of course, there are others in the family who help out as well. From teenagers babysitting their disabled siblings to family members stocking freezers with meals, everyone has a role to play, however big or small. If it takes a village to raise a child, then it often takes an entire county to raise a child with special needs.
In my family, everyone pitches in any way they can. My in-laws make the three-hour drive once a month so my mother-in-law can help babysit our girls. My aunt covers Tuesday nights so I can meet with my weekly writing group. And my mother is almost always on call, ready to jump in and help whenever illness strikes or our usual childcare falls through. Others send food, kind words, and supportive texts from afar. JJ has become our family’s tender and vulnerable heart, buffered by countless layers of love, care, warmth, and protection.
This phenomenon was never more apparent than when my youngest daughter had to undergo emergency surgery at her Rett Clinic in a city four hours away from our home. Due to a series of illnesses, JJ had stopped eating and drinking and was admitted to the emergency room for severe dehydration. A week later, she finally emerged with a newly-inserted feeding tube. My husband and I trailed behind her, juggling a pump, IV pole, syringes, cans of formula, and feeding instructions we barely understood.
The three of us were discharged on the evening of Thanksgiving. Because it was too dark to make the long drive home and JJ was one tantrum away from ripping her new tube out of her belly, we desperately needed a place to stay for the night. Luckily, we didn’t have to look far. My husband’s cousin and his wife open their home to us every time we visit their city to take JJ to the Rett Clinic there. Thanks to them, instead of staying at an expensive hotel, we are always housed by a loving family that showers us with delicious home-cooked meals, fluffy beds, and large glasses of wine. On the night after our hospital visit, we were never more grateful for this standing invitation. Though my husband’s family wasn’t there to greet us this time, they left us the code to their garage door and instructions to make ourselves at home.
Because of the events of the week, my husband and I hadn’t given Thanksgiving dinner a moment’s thought. We figured we would be too busy with JJ’s new feeding pump, liquid medications, and formula to worry about cooking. But two days after we arrived home, we were sitting down to a home-made Thanksgiving dinner delivered to us by my in-laws.
It was during that difficult week that I realized the true extent of my family’s love and support. In addition to bringing us dinner, my in-laws had kept our oldest daughter on their farm during her Thanksgiving break. My mother had helped take RoRo back and forth on school days, and my sisters-in-law had arranged for takeout meals to be sent to the hospital.
For the last several years, JJ has brought both of our families closer together. As our worry about her has increased, our bonds with one another have tightened. But as I thought about love, support, and that word family, I realized I needed to expand my definition. Because family can mean so much more than blood ties. Over time, we have also built and grown our own makeshift family, composed of friends, neighbors, co-workers, and many others.
I’m not sure at what point the network of kindness surrounding us took shape, but I know it was sometime when JJ first began to struggle. Little by little, the people in our lives began performing small, daily acts of kindness. Friends checked in over text. Neighbors walked RoRo home from school. Co-workers brought by pizza dinners and gifts of stuffed animals. The Thanksgiving meal my in-laws cooked for us was not the only one we enjoyed after JJ’s surgery. When we returned home, plates of leftovers and a pumpkin pie already sat on our kitchen counter—courtesy of our beloved next-door neighbors.
When it comes to family cohesion and the special needs world, I think that what we’re really referring to is the vast network of people who care about our child. From therapists to bus drivers to the people next door, this “family” is composed of all the kind people who work to give us a healthier life and a better future.
One of the most frustrating things about having a special needs child is the fact that it can be difficult for us to help others. When you’re caught up in a whirlwind of hospital visits, medications, therapy sessions, and health crises, it’s often impossible to repay other people’s kindness.
However, I try not to dwell on this lack of equality. I know that in our lives we all have moments of ups and downs, of quiet and chaos. These moments might last a long time—years even—but they don’t last forever. Whenever my next season of calm arrives, I look forward to being able to pay back all the care my family has received because of JJ. It will finally be my turn to help the people in my life who are struggling. Because in the end, that’s what a true family does. We take care of our own.
How do you define your own family? What have they done to help you? Let me know in the comments below.