The Social Isolation of a Special Needs Parent
Photo: @conmanross
Social distancing has become a common phrase for people around the globe in the last few months. We have been told to keep a distance from those around us, to stay at home, and to maintain any social contacts from afar. For parents of special needs children, this poses a few challenges (therapies have been put on hold or look very different as they are conducted through a computer screen), but for the most part, many parents are looking around and welcoming the rest of us into their everyday reality.
As a parent of a child with special needs, it is excruciatingly difficult to “make friends”. We moved into our current neighborhood just a few months before our son received his autism diagnosis. While other families with small children met together for play dates, chatted while their children played together at the park, and formed relationships, my husband and I were at the same gatherings, at the same parks, chasing our kids around and ensuring that they stayed safe, and stayed alive. Block parties are such a fun experience, unless you are worried that your child might run off, steal another kid’s toy, get hurt, not be able to communicate with their peers, or get in to trouble somehow. Social situations can be an extremely difficult minefield to navigate, and we found ourselves making excuses why we couldn’t attend and missing out on forming those essential relationships with other parents, that make our own parenting experience a little more bearable.
Even the most extroverted people find themselves in a vortex of antisocial behavior when parenting a child with special needs takes the place of their previous life. I was asked recently by a very well-meaning person, why I didn’t have more friends. My husband and I have moved around a ton, and we have made friends everywhere we have lived, many of these friendships we have maintained over time even with physical distance and time zones in between us. I had to stop and take some time to think, why do I have so many friends across the country (and some outside of the country), yet we have no friends where we’re currently living? What is holding us back? What has changed?
It hit me after leaving a neighborhood get together recently (prior to COVID-19, don’t @ me), that I had spent the entirety of the get together with one ear on the person I was speaking to, and one ear on my child. I heard about half of what was being said to me and made no real social connection with anyone I was speaking with, because I was preoccupied with where my child was, and if he was ok. I cannot recall anything that was said during this get together, but I do remember that the box of pizza was at child-level and I had to redirect my child from dumping it on the ground about 100 times. To this day I cannot remember the names of half of the people I have spent a considerable amount of time with at our local park or at block parties because I can operate at about 50% of my social potential in any given situation where my child is also present.
Even when I have a few moments to connect with a fellow parent (when my husband and I make eye contact as if to communicate “I’m going to have a conversation, it’s your turn to parent”), it becomes hard to connect when it comes to parenting because my experience with parenting is vastly different than those of my neighbors and friends with kids. While other kids my child’s age are attending ballet classes and are learning how to ride bikes, we’re working on speech and dealing with epic meltdowns. The last thing we want to be is a Debbie Downer, but this is our life, these are our struggles, and when you have a child with special needs, they are usually out there for the world to see. There isn’t a parent out there who hasn’t had to deal with a meltdown in a public place, with disapproving eyes watching (if you need help with this, see my post on tantrums in public!), but we encounter this every single time we leave the house with our kids. The disapproving looks and unsolicited advice alone can be reason to socially isolate.
These conversations in a social setting can also be somewhat hurtful for parents of special needs kids. To see a typically developing child run up to their parent and say “Mommy, I’m hungry give me a snack” can be especially painful for a parent of a child that same age who has yet to say the word “mama” at all. In that moment I know I shouldn’t be comparing my child to yours, but it is absolutely impossible not to. It is these difficult social situations that make many parents of special needs kids socially isolate. We find mommy groups on Facebook where we can have honest discussions about how absolutely difficult and sometimes devastating our parenting experiences are, and more importantly, we can share the smallest little victory our child had this week, and it is met with as much enthusiasm as we need in that moment, because other parents in the same boat recognize that fleeting eye contact is cause for celebration.
At the end of the day, if you know someone who has a child with special needs, don’t take it personally if text messages go unanswered, or invitations are turned down. Keep inviting us, keep communicating with us. It means the world to us to continue to have those social connections, even if we may not be emotionally or physically able to reciprocate in that moment.
If you are a parent of a child with special needs, don’t be afraid to communicate these things to your friends (or share this post…I got you), they may not know these things, and they should.
Lastly, when all of this social distancing is over and we can get together in groups once more, let’s go out for happy hour, without our kids, we need that time together more than you know.