There is a memory I have of playing with my daughter with Down syndrome at the park. She was around 21 months old, and she wasn’t walking yet. I held her hands so she could “walk.” I helped her climb on the play structures and carried her when necessary, often dashing to the end of a slide so I could catch her. Several other kids asked for help, their moms were sitting on the benches to the side, chatting together. It was a Mothers of Preschoolers (MOPS) play-date. Except all the moms were hanging out without me. 

isolation special needs parent

This was not the only time a play-date gathering ended up with me hanging out with the kids. I couldn’t sit down with the other moms because my child could not navigate a playground independently, or because my child could not be left unsupervised due to safety reasons. 

What stands out to me most, is that in many of these gatherings — because I was present — nobody seemed to notice I was still spending time alone. 

There was also a time when a group of moms were discussing the “frustrations” of their babies being early walkers, “My ten-month-old just started walking, it’s the worse! I was not ready for that, he’s getting into everything!” I had a five-year-old with cerebral palsy who did not walk independently. I did not mind the conversation as much as the implication that mobility was bothersome for the parent. I couldn’t relate.

Related: Isolation and Special Needs Parenting

Over time, as my two children with disabilities have become older, the isolation has continued to grow. It’s in the offers for help that stopped coming. It’s in the lack of birthday party invitations. It’s in the lack of considering the needs of our family when invited to attend certain events. It’s in the lack of being included to a girl’s night out because my life has changed so much from that of my former friends that we have little left in common, so they stopped asking. Maybe they stopped asking because I said no too many times… but I wish they kept asking. It’s in the sly comments that sometimes come from close friends and family criticizing our child’s symptoms or challenges as a result of our parenting. 

Perhaps what hurts most, is seeing that my children with disabilities also experience this isolation. I have enough disabled friends to know that for many of them this is their reality, too.

No, we cannot attend your event because it is taking place in an inaccessible building.

No, we cannot come to the event because we know in advance it will be too loud, too fast, too bright, and too much for my children to handle the sensory overload.

No, my kid doesn’t want to participate in the church youth group because it is largely based on physical games and physical activities that make it hard for someone with a physical disability to feel like they are part of the group.

No, we are not coming because in the past, when we come, we are met with pity and my children have to deal with people’s condescending attitudes.

No, my children don’t have friends who are asking them to hang out outside of school.

Related: An Inclusive Education Does Not Always Mean Friendships for Our Kids with Disabilities

And I confess, I often isolate myself, too.

Sometimes I am too exhausted, mentally or physically, to say “yes.” Or perhaps I really wanted to go, but I am home and tired, and all I want to do is put on my pajamas and watch Netflix. 

Sometimes, I don’t want to deal with the conversations that keep me on guard, afraid of what someone else may say. Previous experience has taught me people still use those with disabilities as a punch line.

And I have tried before, I have tried to be included, only to realize my priorities are so different I don’t enjoy the outing as much. 

Nowadays, many of my “social interactions” happen thanks to social media — with other parents of kids with disabilities or with disabled adults. 

No wonder our social circle now is primarily other people who have a connection to disability. These are the people who “get us.” These are the people who consider us, and if we show up and my kid needs accomodations, nobody makes it into a big deal. These are the moms I can talk to for hours, and we can talk all about IEPs, insurance, or our favorite Netflix shows. 

And for my kids, it is the individuals in their own communities who have become true friends.

Our tribe has changed. We rely on each other. We need each other. We show up for each other even if it is across a screen. And those connections remind me I am not alone.

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Photo by _Mxsh_ on Unsplash

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