My son’s physical therapist mentioned a while back that she wanted to fix me up with another mom who had a kid on a very similar developmental path as my middle son (i.e., severe cognitive and psychomotor delays plus a feeding tube). She said, “She’s not in the same place that you are.” I wasn’t quite sure what that meant, but I didn’t follow up.
The other day, this other mom had the appointment after mine. And I think I saw what the physical therapist meant. The woman seemed very burdened. She looked about my age and socioeconomic class. This physical therapist costs extra while our county supplies extensive physical therapy for free. So she almost certainly had some means, and her burdens were likely not financial. I introduced myself and mentioned that we should get together. I gave her my email address, but she looked pretty uninterested. I haven’t heard from her.
Then I wondered what makes me so damn okay with everything. I’m actually happier now than I was before I had my kid with disabilities. My favorite of the posts I’ve written was an assurance that “It Gets Better” after you find out you have a kid with severe disabilities. And there’s no question that I don’t know a single family that isn’t better off than they were in the six months after the diagnosis. That is a dark, dark time. But some people get better than others. Nearly half of the parents of kids with my kid’s syndrome have been diagnosed with each of anxiety and depression. The divorce rate is considerably higher than in the general population.
Following is a list of things that have helped my husband and me cope. I wish I knew them earlier on instead of finding out through trial and error. They also seem to be applicable to a lot of the families with whom I’m in contact.
A couple of caveats. My kid is only three. For all I know, in the future when we have someone who is 6 feet tall with a developmental age of three to care for, my depression and anxiety could shoot through the roof. Indeed, I worry about that literally every day. Also, there are plenty of things that determine one’s ability to flexibly deal with a disabled kid that are not under anyone’s control. Financial comfort, close and caring extended family, friends who welcome your kid, trustworthy child care, and a stable marriage to start with are all serious advantages, and we have them. Moreover, most mothers cannot work a regular job and take their kids to all the doc appointments and therapies necessary. So most quit. My work was flexible enough so that I didn’t have to. There are, however, some things that are under one’s control.
Humor. Humor rocks the house. Humor allows you to say what sucks about the situation while taking the sting out of it. Humor punctures the situation and lets the air out so it doesn’t become this enormity of seriousness. Humor makes others feel comfortable asking you questions and hanging out with your kid. When my kid was a few weeks old, my husband and I were in the NICU, and he was holding our baby. He leaned over to me and whispered a joke. I will not repeat it, because (I must admit) it is offensive. But it made the two of us crack up in the middle of all these sick babies, holding our own sick baby. And it just seemed right then that everything would really be okay, in the end.
Honesty and tolerating honesty in others. It’s helpful to admit that this sucks sometimes, that this isn’t what you signed up for, that sometimes you get hit with a depressing realization of how different your kid really is, that sometimes you wish this had never happened, that you’re terrified of what the future brings. If you don’t admit this, you will again make the situation overwhelming precisely because it has become an untouchable topic. It can make you feel as if you’re disloyal. But it does not mean you don’t totally adore your kid to say that it’s really hard, and harder than parenting a typical kid. It can also be very very hard to hear your spouse and other children saying how much it sucks at the moments when you feel great about it. But they have to be allowed to say it, too, or it becomes a giant overwhelming silence in your relationship with them. Talking about it openly with friends also allows them to ask questions they might have, which makes them more comfortable.
Get to know other parents with children of similar level of disability. Nothing turns having a child with disabilities into just part of the daily routine like knowing that a lot of other families are doing the same thing. This doesn’t have to be in person: I’ve got about 150 Facebook friends who are parents of kids with my kids syndrome. It’s so useful for taking the drama out of it – I’m not the only person in the world who comparison shops for pediatric wheelchairs! It’s harder to become the star of your own melodrama when you see so many others doing it, too.
Pay attention to the times that other parents say are difficult. Other parents report that certain things are really difficult. For example, many say that sending their kid to school for the first time causes a depression, or reading developmental evaluations, or seeing a younger sibling overtake the elder developmentally, or being around other kids the same age. I’ve found that if everyone else gets depressed about those things, I almost certainly will too. But if I expect beforehand that I will get a little depressed by those things, the depression is actually much less painful.
Don’t be afraid to have more kids, if you can swing it. My husband and I read a lot of studies that suggested that families in which one kid had a severe disability were happier the more children they had. Everyone does better: parents, siblings, and kids with disabilities. This was a bit counterintuitive, and we were very worried that by having another kid we would be depriving our disabled kid, as well as our other typical kid, of time and attention and financial resources. But we went and had another kid, and it’s wonderful. It makes the disability recede a bit in importance when it just becomes part of the noise of the household. It’s good to focus less on disability.
Take breaks. This is obviously easier for some than others. But take advantage wherever you can. See what respite hours are available through your county or local charities. Yes, someone else really can handle your kid! Guilt trip your relatives into babysitting. But get out of the damn house sometimes!
Do not make your kid’s disability the focus of your life. This is a tough one. We tend to lionize parents who make their kid’s disability their rallying cry. It certainly takes up a huge part of my mental energy. But there are parents who laser focus on getting their kids every therapy, who work with their kids constantly, who quit their jobs and make their kid their goal. It’s possible that their kids will be better off for it, although I’m not sure that’s true (I think downtime and relaxed parents might also be helpful). But it’s always difficult to be happy when your goals depend on someone else’s success or failure. And I just notice that the parents who devote themselves entirely to their child seem extremely stressed. Especially when their kid is plateauing in some area – which will, of course, happen.
Bring your kid everywhere. This will normalize the situation for your family, so you don’t feel as if you have a Rochesterian secret in your attic. It also eases the guilt of depriving your other children of experiences they would otherwise have, and eases resentment you might have toward your child for changing what you would otherwise do. Is it a pain in the ass sometimes to bring the wheelchair when you’re just running errands? Absolutely. Is it annoying when people give disgusted looks or stare when your kid starts drooling or rocking? Totally. I have found, however, that negative attitudes from strangers are far less common than neutral or positive ones.
As I said, I’m only three years into this thing. I’m very curious to see how this list gets revised as my kid gets older!