The Social Cost (And Reward) of Raising Children With Special Needs
How Autism, ADHD, Down Syndrome and Other Special Needs Affect Female Friendships
When my husband and I first had children, I was elated to meet other mothers with children the same age. Watching our kids on the playground while we caught up over coffee turned into playdates at each other’s houses and helping each other plan birthday parties. But as our children grew older, my kids started to experience developmental delays, while theirs did not. The dynamics began to shift and I soon found myself quietly pushed out of the group. I will never forget the day that I accidentally stumbled upon a birthday party that my children weren’t invited to attend. I think it hurt me more than it hurt my kids.
This was almost ten years ago, shortly after my oldest son was diagnosed with autism and before our second son was also diagnosed with autism.
Like most women, I’ve always had different categories of friends. As I’ve gotten older, some of these relationships have evolved alongside me: childhood friends turned into adulthood friends, college friends to colleagues, couple friends to mommy friends. The strongest of them seem capable of surviving virtually any major life events—a long distance move, divorce, a life-threatening illness. But there is one life altering change that can negatively transform friendships virtually overnight that no one talks about: What happens to these friendships when your child is diagnosed with special needs?
The son of a close friend was recently diagnosed with autism. She called me, relieved to have a diagnosis, yet nervous for what the future holds. She is watching in frustration, disbelief and sadness as she grieves friends she never thought would leave her life, slowly back away. As she struggled to make sense of this new social and emotional landscape, this is what I told her:
Spontaneous social outings may become more challenging. Remember dropping everything for your friend who had just suffered a bad breakup in college? Or going out for after work for cocktails to celebrate a friend’s new promotion? No longer can you just get a sitter like your friends with typical children do. No, now you may have to pay a sitter extra just to put up with your child’s “quirks,” i.e. tantrums. And frankly? Sometimes it’s just not worth it. By disrupting your child’s schedule, there will be hell to pay to get him back on track and seriously, who the hell wants to do that?
Your financial priorities will change. I remember conversations my husband and I had prior to having children about what our future life would be like: the house we would live in, the cars we would drive, the trips we would take. That fantasy abruptly changed once we realized the tens of thousands we would be spending on therapies for our sons. The good news: it’s not as painful as you might think. The truth is, I no longer care as much about material things as I used to. Yes, I still love shopping for clothing, but the latest fashion will always take a backseat to paying the therapy bill first. And about that fancy new car? It now seems frivolous to me. When it came time to purchase a vehicle, I did the one thing I said I would never do: I bought a minivan. The decision was ruthlessly practical. In addition to being about ten thousand dollars cheaper than the rest of the cars we looked at, this was the only car that allowed me to remotely open the doors wile physically restraining a child melting down in a parking lot.
People will offer lots of unsolicited advice. Try not to punch them. Parents who do not have atypical children have no idea the hours of sleep you have missed due to worry, the reams of research you have done on therapies, and the countless methods you have tried on your child that haven’t worked. I can’t tell you how many times friends with neurotypical children would call me and try to sell me on the latest snake oil with some insensitive pitch such as ‘My neighbor’s grandma’s great-niece tried this diet and overnight it cured his autistic behavior’ or ‘I read on this forum that this method is great for fixing this behavior’ or ‘Have you tried this therapy? I mean, I know it’s getting a bad-rap, but…’
After one such phone call from a well-meaning friend, as calmly as I could, I replied, ‘Do you really believe there is a method or therapy out there that I have not researched? Or tried?’ After silence on the other end, I continued, ‘Just because you don’t know we’ve tried it, doesn’t mean we haven’t.’ Sometimes, you just have to shut the conversations down, for your own sanity.
Your emotional bandwidth may reach a new low. Mothers of children with special needs are stretched emotionally to the limit. After our first born was diagnosed, I found it challenging just getting through the daily grind of therapy and doctor appointments. I was lucky if I managed to touch base once a week with friends I used to speak to multiple times a day. After one friend complained that I hadn’t called her in four days, I wanted to scream ‘I don’t know the last time I did laundry or got a pedicure or went to the grocery store and you want me to remember when I last called you?’
Unfortunately, some friends may never be able to understand your struggle and that is okay. Though they may no longer be your confidant, this does not diminish their previous role in your life. One day, they might realize how terrible it was to judge you for your child’s behavior or your parenting style, or they might not. In the end, it doesn’t matter. Your priority is your child over your friend.
Make room for new friends who do understand.
There are others out there, floundering in their new roles, muddling through medical jargon and figuring out how to do it all, looking for someone like you. This took me so long to figure out and I regret not connecting with other mothers earlier than I did. I will never forget bringing my oldest to a park, hoping to meet other mothers, and watching in horror as he had a meltdown because his tiny toy car was moved a millimeter on the slide. Instead of giving me a sympathetic look, I heard the other mothers making comments such as ‘If that was my kid, he would never act like that’ and ‘she needs to discipline her kid.”
Fortunately for me, I eventually made friends who don’t judge. One night recently, our youngest ate a battery and I had to take him to the hospital. I expected their response to be ‘How did you let this happen?’ but instead it was ‘Do you want me to meet you there, or pick up your other son?’
These are the friends who understand without saying a word. Whose children will play with yours and not blink an eye when your child eats the plants in the yard. Who can come over and sit with you after you’ve received devastating news from the doctor and won’t judge you for the cuss words that come out of your mouth or the tears that won’t stop running down your cheeks. I could never have imagined it, but the unwavering support I have from my friends now is way more valuable than anything I ever received from the women I called my closest friends before my children were diagnosed.
Make room for these women, you’re going to need them in ways you cannot yet fathom.