It’s not exactly breaking news that social media and the internet are both a blessing and a curse. But when it comes to special needs parenting, the pros can outweigh the cons. We can connect to people in situations similar to ours, ask questions we find difficult to answer on our own, and tap into collective knowledge and years of combined experience. It’s certainly why I keep coming back. Every time I find out about a new piece of equipment, a useful medication, or a scientific advancement, my daughter benefits. I’ve lost count of the number of times I’ve seen something online and thought, Thank God I came across this. It could really help JJ.
But for every time this happens, there is another time when it doesn’t—when I leave a special needs parenting page or website feeling lonelier than when I first started scrolling. This feeling of isolation has led me to do some deep thinking, as well as some digging into the psychology of social media.
Some researchers have found that the particular type of social media use—rather than the frequency with which it is accessed—has the most powerful effect on how we feel. For example, people who use Facebook “actively” (by engaging with posts and making comments) experience more positive outcomes than those who use it “passively” (simply scrolling without engagement). This sounds logical, though in reality, it’s likely much more nuanced than this.
My own theory is that when we use social media as special needs parents, we should have a specific goal in mind. However, not every goal is created equal. Social media sites, webpages, and online communities have certain things they do well. I’ve found they’re great for sharing informational links and inspirational stories; asking for advice about a specific medical issue, medication, or device; and swapping or selling equipment.
It’s when it comes to the emotional side of things that it gets tricky.
When we’re looking for personal connections, we need to be mindful of our expectations. This is especially true when what we want is to feel less lonely. And if we’re honest with ourselves, many special needs parents are very lonely. This is a stressful, isolating lifestyle. We’re often spread out from one another and trapped at home by our children’s vulnerability to germs, mobility limitations, medical complexities, or behavioral issues. It’s a challenge to leave the house at a given time for an in-person support group, meetup, or playdate. So we turn to our computers, tablets, and phones out of necessity.
I’m a good example of this phenomenon. My daughter's disease is rare enough and her diagnosis new enough, that I have never met another Rett family in real life. I only have the internet. This means that almost all my interactions with the Rett community happen on Facebook. Like so many special needs parents, I don’t have much of a choice.
I don’t want to downplay the importance of these parent pages. The photos, videos, and updates are great if I want to see other families like mine. It can be so comforting to discover girls who look like JJ, parents who deal with similar challenges, and people with equipment and devices that are familiar to me. If I want a reminder that we’re not the only family like this, then social media can be wonderful.
The problem comes when I want more, when I want to truly feel connected to someone. Because it’s relatively easy to find people who look or struggle like you. But it’s much more difficult to find people who think or feel like you do.
It’s not easy to find people who are really on the same wavelength as you are—who don’t just share hobbies or interests, but similar worldviews, beliefs, and values. I don’t know about you, but I don’t have many of these people in my life. And none of them has a special needs child.
Often, I see other special needs parents online and feel an initial elation. They’re like me! I think. They truly “get” it. And then they post about their thoughts, beliefs, and feelings, and my excitement disappears like air escaping a deflating balloon. Don’t get me wrong—it’s great that people have different viewpoints. It’s just that many of them don’t resonate with me. I’m not religious. I don’t believe my child’s disease is a blessing. I don’t think that everything happens for a reason. To me, my daughter simply had the bad luck to be born with Rett Syndrome and the good fortune to be part of a loving family.
My own viewpoint isn’t pertinent to this discussion, however. I’m simply providing it in order to show one way in which a special needs parent can ascribe to opinions that clash with others’ beliefs. These differences only add another layer of complexity to our search for friendship and connection.
Another difficulty is the way in which our children struggle. Not every disease, illness, disability, or syndrome is comparable. Someone whose child is physically healthy but has a severe intellectual disability faces different challenges than someone with a child like mine—a girl who is very disabled but understands everything happening around her. Someone whose child was born with disabilities that aren’t going to change over time probably doesn’t have the same worries about the future as a parent of a child with a progressive, life-shortening disease.
So, with all of these barriers to true connection, what are we meant to do?
I don’t have all the answers, but I do have a few suggestions. First of all, I think it’s important not to give up on the idea of finding another special needs parent friend. I know it’s difficult to arrange phone calls, Zoom meetings, playdates, and meetups, but it’s not impossible. When we put a voice or a face to a name, it can facilitate real emotional connection. The few times I have spoken to other Rett families on the phone or seen them on a Zoom call, it’s been an invaluable experience.
I think we can also continue using social media as long as we use it in the most effective way. When I read or comment on posts written by other special needs parents, I’ve started to concentrate on the exchange of helpful information or on the fact that there are other girls like JJ out there. I no longer expect to find a true and lasting friendship—at least not anytime soon.
Last but not least, we can use the internet to help the people in our lives better understand our realities. If we expect our posts, photos, and status updates to forge new and lasting bonds, that’s asking a lot of the internet. But if we use these things as a support for our in-person interactions with the people we already know, we’re much less likely to be disappointed.
I’ve found that my social media updates—most especially my blog posts—have facilitated in-person conversations and eased real life social encounters. When I meet up with a friend, visit with a family member, or run into someone I know, my posts have set the scene. That person already knows about the difficult things happening in my life, the struggles my family is experiencing, and the emotional turmoil created by my daughter’s Rett Syndrome. The two of us can either use this knowledge as a springboard into conversations about difficult topics or as a mutually acknowledged background to anything else we choose to talk about.
After much turmoil and disappointment, I’ve come to realize that social media and the internet aren’t good or bad in and of themselves. It’s really how we choose to use them and the things we expect (or don’t expect) that make all the difference. We can interact with posts, chats, and updates in ways that add to our happiness. Or we can view them in ways that only sharpen our feelings of isolation. In the end, these are the tools we’re all stuck with, and we need to make the best of them. It’s the only way we’re going to build something worthwhile.
What are your thoughts on the internet and social media? How do you use them? Let me know in the comments below.