May 30, 2014

Ye Olde Condundrum

Now that Hart and Jeff are older (almost 21!), it has been a while since I have been in a group of special ed parents whose children are in elementary school. I am off on new adventures, such as shepherding SSI and Medicaid applications through the labyrinth of official government vetting.

Last weekend, Jeff and I attended a community camp-out through our synagogue. I love this event, although I haven’t attended in several years. One of the great things is that it attracts a cross-section of membership, from families with toddlers to teens, to a few older people without children. As ever, there are lots of adopted kids and an overlap of parents with children with special needs. I must be the grande dame of that demographic.

I found myself in a cluster of four mothers, two of us encouraging the other two to get wills and estate planning done. “You don’t want the state to determine what happens to your child, if some tragedy befell you!”

But I had the sinking feeling of deja vu when one parent said she had taken her daughter to the neurologist Jeff goes to, hadn’t liked what he had to say and left. I asked, “Who prescribes medication for your daughter?” I regretted this the minute I said it, because I saw the familiar squirm that I used to encounter so often. “Oh, we aren’t ready for that, yet.”

I have a lot to say about medication for disabled children and since I don’t want to be shrill, I am venting in writing. To these parents, I wish I could say,

Look, we have all been there. We are educated, intelligent, middle-class women. We are used to working, studying, solving problems and when it comes to child-rearing, we think if we just exert the effort, put in the time, we can work this out.

Special needs kids are wild cards. No amount of hubris or just plain effort is enough. Anecdotally, I know of many, many parents who finally, out of options, tried medication for their child, only to exclaim, “We should have done this years ago!” I know of no one who has ever said, “This was a huge mistake.” No one.

Maybe I am being harsh. After all, my children’s needs were so severe and so obvious that it was evident at age three . . . . they needed medication. In fact, often thereafter, a new doctor would say off-handedly to me, “Ever consider medication?” To which I would laugh uproariously, and say, “He IS on medication!”

It seems even more warranted in children whose needs are slightly less severe than my kids’ and who are trying desperately to keep up in a regular classroom. That seems to me particularly unfair. For a child with ADHD or a debilitating anxiety disorder, the playing field will always be tilted against them.

When it comes to medication for special needs children, it seems we parents all eventually have that "come-to-Jesus" moment.

I had breakfast with a friend yesterday, a mother of a classmate of Jeff’s. We agree on this: the choices we make for our special needs kids are usually more about us than about the kids. I am not sure what that says about my parenting. If it means that I am lazy and looking for a quick fix, so be it. But after 18 years with Hart and Jeff, if there is any fix, I not found it, and I sure have looked.


Lynne Arons said...

I so agree!, While my son's issues are mild, they are still issues and get in his way. Medication is what gives him the ability to be available for learning rather than spending his brain power on "sit still, be quiet, sit still, be quiet..." No one ever told their kids to just use self control about metabolizing sugar, why do we treat brain chemistry so differently from pancreas chemistry?

Notes From the Ground said...

Preaching to the choir, my friend! Been there, done that, still trying to find the right meds!

RL Julia said...

Your posts never fail to make me laugh or smile. Part of being a parent is teaching one's kids the skills that they'll need in the future to make decisions about themselves. Medicating for a behavior or thought pattern that is disruptive (to you as a parent, the child, society etc...)often allows the child to have more positive experiences and interactions and build memories which can better inform future choices (should the opportunity arise).