Today I read an article by Ami Claxton, Ph.D. called Social Isolation: Are People With Disabilities Invisible? And it occurred to me that this may be an even broader issue than what was described in the article.
Dr. Claxton wrote with eloquence and humor about the challenges of socializing for people with disabilities and their spouses. As I read her article I was left wondering how two people in such different circumstances could have such similar experiences. Dr. Claxton is a woman whose husband is a wheelchair user and I am a Mama to an ambulatory young man who has cerebral palsy.
From talking with other Mom’s I know that I’m not alone in this. Making and keeping friends is hard for many mothers who have a child with a disability. It’s like we become invisible over the years. I have a few thoughts about what can make friendships so challenging for many of us moms.
1) We say “no” a lot.
Our lives are sort of ridiculous right? We are running to therapy, doctor appointments, managing crazy behaviors, struggling through three hours of homework that should have taken one. We are trying to manage careers, houses, extracurricular activities and therapeutic activities. Stretching regimes, filling the pill box, running to the pharmacy, another broken brace!
When I say “no, I can’t come over for a glass of wine tonight,” what I’m really thinking is probably related to the fact that my son needs an infusion and a glass of wine will make it hard to get the IV started. Or maybe I’m thinking about how exhausted I will be once I get the kids to bed, and that if I don’t get to bed on time, it will be impossible for me to be an alarm clock for children at 6 a.m.
2) Most of our friends don’t get it.
I have some friends who get it, sadly, I’ve never met most of them in person. I have a strong online community of others moms who struggle with similar issues. In fact, last week when I was feeling blue that we weren’t included in a fun family outing with friends, I shared about my feelings on an online forum for parents of pediatric stroke survivors. I quickly discovered that I wasn’t alone in feeling isolated. While it’s reassuring to know it’s not just me who experiences these issues, it’s also very sad that so many other parents of children with a disability struggle with the same issues.
Most of my friends don’t get it. They don’t understand that swim lessons are more than just learning to swim, we swim for therapy. They don’t understand that it has taken us years and years of the slowest of progress to learn any sort of actual swimming stroke, and taking a session off is bound to lead to regression.
They can’t imagine the constant, never ending stress and the toll that it takes on a person. It’s hard for someone who isn’t living it, to really understand what our lives are like. Which often leads to erroneous assumptions about our motives. Friends may assume we are just blowing them off or aren’t interested in hanging out with them, or that if we really wanted to, we’d find a way to make the time.
Trust me friends, when I figure out how to stretch the days out to 30 hours, I should be able accomplish my daily tasks in about 28 of those hours and I will reserve the leftover two hours for hanging out, watching movies, drinking wine and singing karaoke.
3) Child behavior problems can strain relationships.
Another issue that has impacted my friendships is my child’s behavioral challenges. My son has been known to have some epic meltdowns. There was a time when we rarely left the house because I didn’t know what might set him off and I couldn’t manage him and his sister in a crowded museum or zoo while he was in full blown melt down mode.
Things have improved substantially with this and meltdowns are usually reserved for the home now which make them much easier to manage. However, I feel like over the years we’ve burned some bridges with friends who no longer ask us to join them because they have had the displeasure of being present for a meltdown.
Several years ago we went to the zoo with some friends and my son wanted to participate in an activity that had the nerve to be done about two minutes before our arrival. It was just one of those unavoidable disappointments that sent him over the deep end and carrying him, flailing and kicking while pushing his baby sister in the stroller was virtually impossible. He got away from me and hid behind a trash can and then when I finally found him, he ran ahead and got on the elevator without me. This was six years ago, and I still remember the horror of this day so clearly. Not surprisingly, we were never asked to go to the zoo or anywhere else with those friends again.
4) Our kids can’t always keep up.
For some of our kids, it’s hard for them to keep up with other children. At the zoo or an amusement park when other kids are running from one place to another with boundless energy, my son can’t keep pace. He fatigues easily and might be able to run with the gang for the first hour or so but then he is probably going to be left behind, along with me and his sister to keep him company. I’d like to think that if I had wound up in Italy and not in Holland, that I would tell my kids to hold up and wait for their friend who has a hard time keeping up. But I know that it’s impossible to ever really know what I would do if the situation were reversed.
Yesterday was Halloween and we went trick or treating with some neighborhood friends and their moms. Within five minutes my son was left behind and spent the entire evening trying to catch up, skipping houses and rushing all night long. He never did catch up for more than a minute. Luckily he always makes the best of it and has fun despite these challenges but it’s sad for me. Trick or treating is so much more fun when you are hanging out with friends. Yeah, it’s awesome to get as much candy as you possibly can. But candy and friends makes for the best fun.
5) We become forgotten, invisible.
For all of these reasons, we become invisible and forgotten. Sometimes by choice when other moms avoid us after witnessing a behavioral outburst. Sometimes exclusion is done in an effort to not make our child feel badly, for instance when people decide not to invite us because it will be too hard for our child to keep up with the crowd. Other times we aren’t invited because of a pattern of refusing invitations or making excuses not to join in. Sometimes friends just forget about us altogether when making plans and they stop asking. It can be pretty lonely sometimes as an invisible mom.
I don’t have a lot of advice to share here, I feel like I have a pretty good handle on how I wound up being an invisible mom, but becoming visible again seems like it’s a more difficult prospect.
Suggestions made by Dr. Claxton have similar challenges for us invisible moms. As she suggests we can be the hostesses and have friends over to our place all the time on our schedule (if we can afford it, have time to plan it, and let’s be honest, have time to get the house clean!). Or maybe we should restrict ourselves to friendships with other moms who have children with a disability (because that’s realistic).
The best answer I have for invisible moms is to keep putting yourself out there. Smile and try not let it get you down. Sign up for classes if you can make the time. Connect with other mom’s in the waiting room at therapy. Stay connected online if that’s the best you can do. I have to believe that it is possible for us to have some semblance of a fulfilling social life… but at this point, I’ll have to get back to you on the specifics.