Parent Support Group

Last week, on Thursday, I attended my first parent support group at Isaac’s school. The timing was notable.

The two and a half weeks prior to that meeting had been a blur of sick days and struggling that culminated in a full Mom meltdown and a recognition that I need more support. (See my previous post, How Sick Days Can Make A Mom Unravel.)

And there it was, on my calendar: Thursday, November 14, 8:30-10:00, Parent Support Group. Yes, please.

“What do we do now?”

I actually missed the initial meeting of this group, two weeks prior on one of the days Isaac was home sick. Apparently, discussion at that meeting centered around learning a child’s diagnosis, how those conversations with medical professionals unfolded, and the emotions that followed. I can only imagine the stories in the room. I know ours, and it isn’t light. And every one is different.

This week’s discussion picked up from there, with the next-in-line question, “What do we do now?” How do we find the right interventions for our child (then and now)? How do we manage the stresses, and where do we find support?

If there’s a group I need right now, it’s this one, so I override my impulse to just listen. My voice cracks every time I say something, because I feel fragile, on the verge of tears. But it’s a positive vibe in the room, a circle of survivors. All Moms. Doing everything in our power to make life work for our kids and our families.

It’s the parents who need support

The first thing I say is something I feel deeply, that our kids are well taken care of because they have us; it’s the parents of special needs kids who need support. I don’t expand during the meeting, but I will here. And while I can’t speak for all families of kids with special needs, I think many will resonate with the sentiments that follow.

As most parents do, we put all of our best resources toward raising our children. For a child with special needs, that requires substantial additional investments of both money and time. In our case, that includes specialized schools, targeted therapies, committing to a long daily commute, and ongoing parent training to help us best care for our child. Isaac is getting the support he needs. The question is, are we?

The most helpful people in our life are friends and family who recognize that our parenting burden is more demanding than the norm, who are sensitive to the differences and take a genuine interest in what life is like for us. They witness the stresses of our life first-hand, some over many years, and support us by watching, asking questions, joining in.

And this is something even acquaintances can do, at least to some degree, because it doesn’t have to be a lifetime commitment. It’s really more of a posture, acknowledging the special needs child as a person of value and dignity, and his or her family as the experts in their child. Because even though the parents may be struggling–and still learning–they know more than anyone else about their child and what he or she needs.

How to offer support (and how not to)

Not as helpful are the myriad of suggestions and advice, often from well-meaning family members, who see “problems” and want to help solve them with this or that method, often completely disconnected from the therapeutic plan we’re following. Or worse, the comments and looks subtly suggesting that what we’re doing–or not doing–is causing the problems. The reactions of strangers are hard enough; but when people who know us are critical, it hurts. And it drives a wedge in the relationships that are our best hope of real support.

It can be appropriate, even welcome, for someone to express concern or offer ideas to special needs parents. But bear in mind that our lives literally revolve around helping our child, so how you approach matters. If there’s a problem, we’ve likely been working on it, often in a holistic and comprehensive way. If you have a genuine interest, the best place to start is to ask what we are already doing and see how you can support our ongoing efforts. Because what we really need isn’t advice, but help.

I gather from comments at the parent support group meeting that others have faced many of the same challenges we have. Fortunate-ly, most of us have some respite, even if only a few times per year, but the vast majority of the burden we carry on our own.

Sensitivity note

I have been careful not to include any names or other identifiers or to share anything especially personal that is not mine to share. I have the utmost respect for the women in these stories and have done my best to present them in a thoughtful and sensitive way.

Parent Support Group: stories and common bonds

One mom tells her story of being fired from her job because she was forced to miss work so often due to her son’s autism. She eventually found a part-time job, but even that became too much to juggle. She can’t bring herself to say she’s a “stay at home mom,” not that there’s anything wrong with that (Seinfeld reference), but because she did have a career. Her intention was to work. She now considers herself “retired.”

Across the board, we struggle with the commute, many of us driving halfway across Houston to get to the school, which is best equipped (and in many cases, the only one equipped) to care for our kids. One mom, whose commute is 10 miles longer in each direction than mine, stays at the school/in the neighborhood every day between drop off and pick up, because it isn’t worth the time and expense for her to return home. Every day. And she’s been doing it for years.

We agree that, in many cases, even our extended families don’t understand what it’s like for us. The mom right beside me says, “There is a way to fix that: have them live with you.” Her parents sold their home more quickly than expected, she explains, and moved in with her family for four months. There were times when life was happening at her house, and her parents, exasperated, said, “Should we call the police?!” We all laugh. “How can we help you? It shouldn’t be this hard!” But it is this hard.

When her parents experienced the marathon her life it actually is, they finally “got it.” Now every time they talk to her on the phone, they tell her how wonderful she is, how well she’s doing as a mom.

I ask her if she can give them all of our phone numbers.

Finding myself

I’ve been sitting with these stories for the past week, and oddly, they comfort me. However alone I feel in parenting, there are others who struggle, too. Many of them have given up far more than I’ve had to, and yet here they are, talking about it. In good humor.

We know we’re not supposed to compare ourselves to others, yet it’s only natural to make comparisons. I realize something in the days after the parent support group meeting. When I feel most alone, I am comparing our life to families of typical kids, keenly aware of how much easier it would be without the extra layers of need and responsibility. But that will never be my life, even if at some point, I thought maybe it would. That’s hard to admit. But it feels good, too. Because nothing hurts worse than trying to be what you’re not.

It’s easy for us to gravitate toward the norm and expect a more “typical” life, because Isaac is a very capable child, very connected, with a strong drive to interact with the world. But typical, he is not. Isaac is refreshingly different, and our life is forever different, too, because of who he is.

I don’t so much compare myself to these parent support group moms as I do find myself in their stories. And it always feels good to be found. Even if it’s in a place I never expected to be. A parent support group at my son’s school. The first of many.