A social life is so important. Lack of one can impact mental health, causing feelings of isolation, loneliness, and depression. Yet, socially is where many parents of children with developmental disabilities, such as ADHD and Autism Spectrum Disorder, are often impacted. Parents may withdraw from social settings for several reasons, such as not having adequate childcare or stress about how the child may react in a particular environment.
My youngest son is 4-years-old and has ADHD and autism. The first two years after his diagnosis, our family was on lock-down. After multiple meltdowns and other challenging behaviors in places such as birthday parties, theme parks, and friends’ homes, I just said, “I’m done.” The stress I went through just worrying about what might happen was more than I was willing to risk. It was isolating.
When my older three kids were growing up, life was busy. Weekends were often filled with outings such as park visits and play dates. We almost always had a birthday party invitation on the calendar. In our close-knit community, at least every few weeks, the neighborhood families would get together. The adults would chat inside, and the kids would play outside, requiring very little supervision. Well, that was then.
I have to be very careful where I take my son. I never realized how poorly many places FOR KIDS were designed. We once attended a birthday party at a park that had no gates, was near a busy street AND next to an open body of water. I think we lasted about 15 minutes, all of which involved me just keeping my child alive.
It is also challenging to visit other people’s homes. My son is afraid of barking dogs, so I must ask if friends have pets and if the pet will be roaming the house. I must ask if they have stairs or pools or fenced-in backyards. Also, when we go to someone else’s home, my son gets so overwhelmed by the newness and gets overly excited, which can lead to meltdowns.
The “I’m Done” Aha Moment
I’ll never forget when I realized a “normal social life” for our family was over. It was a community holiday event held in a neighbor’s driveway. This evening gathering was an opportunity for neighbors to mingle and kids to play while enjoying hot cocoa and cookies.
At first, I declined. The neighbor hosting said, “Please come. Everyone will help watch the kids.” I thought, Yeah, right. Most parents won’t even be watching their own kids much less helping me look after my autistic son, even though I knew she meant well. I wanted to be able to go. I wanted my son to be able to play with other kids and me to socialize with other adults.
I brought him in his stroller, hoping he’d be content in it watching the other kids run around the dark front yard with glowsticks and pretend snowballs. Nope. So I took him out and put his harness on him, which tethered him to me. That meant I was running through the crowds of adults and kids along with him. Being that it was night, every time he’d see the headlights of a car, he’d get excited and run TOWARDS the vehicle. It was exhausting, embarrassing, and after just a few minutes, I told my husband, “I’m done!”
I realized for us to survive socially and attend events outside our home, things had to change and change big! We adopted a new outlook on our social life. Hopefully, some of these tips will help your family, too!
How We Do It Now
Below are ways in which we now handle our social life. It just depends on the event for which option we choose.
- My husband and I take turns staying home with our son, and one of us attends an event.
- We hire one of his behavior therapists to babysit, and we both attend.
- If we choose to attend an event as a family, we ask A LOT of questions beforehand. Hard no’s are events held in open spaces, near heavy traffic, near open bodies of water, and that disrupt his rigid sleep routines.
- If we attend an event as a family, my husband and I rotate, each taking 10-minute shifts where one of us is completely devoted to looking after our son.
- We host a lot of events in our home, so we are in control of the environment.
- For now, we say no a lot.
In the Future
Early in my son’s diagnosis, I tried very hard to not have autism impact our life or at least lessen the impact. But that is impossible because autism IS a part of our life. There are days where autism stretches me to the point I feel as if I am going to break, and there are days where autism fills me with more joy than I’ve ever experienced.
My son and his autism are intricately connected, and it is up to me to help him be as successful as possible. Part of that often means disappointing friends and family when I feel a social event isn’t worth the risk.
It will change as my son gets older. He’ll learn new skills, and I will learn more about how to help him be successful in a variety of settings. But for now, this is where we are, and we are okay with it!
I don’t talk about autism for sympathy or pity. I talk about it to open a door into our lives, to help others understand, to educate, to raise awareness, and build acceptance for autistic adults and children. – Bec, Autism Uncensored