FTF: Disabled x2 by Leslie O'Donnell

Here is November's First Things First article. This article comes from Leslie O'Donnell. Although Leslie’s background is in disability activism, psych education & special-ed teaching, Leslie O'Donnell now finds herself in the full-time career of special-needs parenting. The mother of a neurologically disabled toddler, Leslie asks the tough questions and offers the tougher answers.


Disabled x2
By Leslie O'Donnell

Two weeks ago, I woke up at 5:30am in excruciating and unfamiliar pain. The doctor on-call that night listened to my symptoms and thought it sounded like kidney stones. What I heard was, “You will have to pull a still-exhausted Jamie out of bed, and torture him and everyone else by dragging him through a long visit to just the sort of medical facility that he has really bad memories of and phobias about. This will potentially lead into him getting to leave only by being torn away from you, who will have to stay there getting treated, therefore NOT BE THERE TO BE HIS MOMMY.” Suddenly, my pain levels and diagnostic prospects mattered a whole lot less. Well, they did to me, anyway. My husband, devoted daddy and husband that he is, was having none of it. “Just how expendable do you think you are?!?!” he not-quite-asked me.

It’s funny. You never expect it to be flattering if your husband looks at you as if you were the most infuriating idiot in the world. As it turns out, it can be.

Testing showed that my kidneys were fine, but my gallbladder had had just about enough of me. I had to resign myself to all the infinite lamentable ramifications of NOT BEING THERE for my child, that a special needs mommy is a little too good at thinking of. Furthermore, while they just barely managed to remove the organ laproscopically, I had to resign myself to a one day emergency surgery that still managed to turn into three days and two nights in the hospital. Still, now that I’ve been home for a week, Jamie has mostly recovered, and I can again hug him silly without immediately screaming in pain or throwing up, it is somewhat easier to remind myself that by putting him through those three days without me, I was able to avoid a more intensive version of the surgery which would have kept us apart for far longer. More importantly, I was able to make sure, at least on this account, that Mommy would remain with him, in a more general sense, to get him through all the other traumatic surprises life can hold in store.

There is a lesson in that, which, through my haze of pain killers, I grudgingly apply to everything else I intended to write this article about. See, my son has special needs. Born two months premature and with a blood disorder further complicating his development, he was left neurologically disabled. My poor screaming baby who was not supposed to survive is now happy and healthy, but he also has Autism Spectrum Disorder, Sensory Processing Disorder, Seasonal Affective Disorder, and an as-yet-unidentified neuromuscular disorder. Every step of the way between the two – every day, and every night, until this hospital stay – I have been there with him and for him, doing everything I can in my power to help him thrive because of and in spite of himself. The qualifier there, however, is “everything I can.” The thing is, recent organ failure quite aside, I have special needs too. I am not neurologically disabled, but I am physically disabled.

It’s very well and good to talk about how to triumph, in whatever large or small ways you can, over the challenges of meeting the needs of a special needs child, while still taking care of yourself so that you CAN have the best chance of meeting those needs. Oh yes, very well and good, as well as easier said than done, and a variety of other clichés. But what do you do when both you and your child are disabled, especially if those special needs – which neither can afford to have neglected – sometimes conflict? I live with chronic pain, fatigue and mobility-impairment, and yet caring for my child demands always being “on”, always being able to move and think enough, and fast enough, and being able to take everything he dishes out with a deflection towards improvement, not a grunt from the impact. This post-surgical recovery period isn’t the first time that being too careless about how I take care of him could incapacitate me before it incapacitates him; it’s just the first time those considerations come with carbon-copied forms. So what do you do??

To avoid unconventional flattery from my husband as often as possible, I keep two running lists in my head, against which I habitually check – preemptively, when possible – everything I am thinking of doing for my child. On one list, I keep in mind his needs on one side and I keep his limitations on the other side, both in general and as they stand more specifically at any given time. On the other list, I keep my own. Brainstorming is not so much about whether or not either of our needs will be met, but about how they can be met in such a way that they do not conflict with the other person’s limitations. The rule of thumb….and of recent experience….here, is that if anyone’s limitations are exceeded while forgoing their own needs for those of the other, the needs of the other are going to end up worse off, anyway. Often enough, this strips down from needs all the habits, rituals, traditions and aspirations that we attach to them. Bitter pills to swallow can be the ones that keep you alive, though.

So maybe when I’m choosing my battles with the war in mind, I have to do Jamie a favor that’s really a favor to myself, like letting him watch a video before doing his homework, so that I don’t have to go for a lot more hours than I aught to without my Percoset, just to avoid an hour’s overlap with him being home from school. Or, maybe sometimes I have to do myself a favor that’s really a favor to him, like begging off taking him to the playground so I have the spoons to get him through any bedtime drama without losing my cool and not being the super-mommy that he needs more, in that way. Sometimes, we just have to both feel compromised, so that we can both get what we need – like during those aforementioned bedtimes, when I am not currently allowed to end the ritual our traditional way, by snuggle-carrying Jamie directly from my lap on the rocker and into his bed, and so instead must allow him to prolong bedtime with lots of extra “Mommy’s turn.” I’m not happy about the delaying of bedtime and the lessening of sleep, he’s not happy about having to break free of my embrace to put himself to bed, but on the other hand, he still gets the extra reassurance and comfort he needs at the end of what’s always a hard day, and I get to not herniate something that’s still healing. Before all this, the balancing act might have involved asking that my birthday present be a new walled, inflatable trampoline for him, so that he can get his motion and impact even on the worst-weather days, without needing mommy’s body to be able to provide them (or safely redirect them from something else not built to safely handle it).

However keeping our needs in balance are done, the important part is keeping in mind that it HAS to be done. There never seem to be enough things I can do for my child, so when I think of something I could do, but I can’t…oh man, that kills me. But what he needs more than to have me be the one to meet all his needs in the way I would like to, is for me to be there, the one who understands him best, the one he is most connected with no matter what he is doing with who, and the one who has the most luck figuring out what anyone can do to meet his needs. What he needs is for the “killing me” to remain metaphorical.

Speaking of which, I’d really love to keep editing this until it meets the standards I have when I’m in better shape, but Jamie is going to be home from school soon, and Mommy needs to get off this chair and work the kinks out so she can make it down the driveway to get him from the bus.


Patty O. said...

Wow! I can't imagine raising any kids when dealing with chronic pain, but a kid with SPD and autism (among other things?) seems incomprehensible!

This was a great post. A great reminder that we need to take care of our needs as well as those of our kids.

Black Rose said...

From one Spoonie with special needs kids to another- I hear everything you said here. It's not easy, but I wouldn't trade it for anything. My kids are the light of my life, and I wouldn't trade my three *3!* special needs kids for anything. They've taught me so much about what I truly AM capable of, and have really taught me the difference between things we *want* and *need* to do.

KDL said...

I unexpectedly spent 6 weeks in the hospital away from my ASD daughter, who was undiagnosed at the time. Her general unraveling in my absence was what pushed us to get the diagnosis. I hadn't realized quite how much she relied on me to negotiate her day. After I returned she wouldn't even look at me for the first few days, and to this day if I say I'm going to the doctor it sort of freaks her out. More recently I've been dealing with my own physical limitations - chronic headaches thanks to a car accident 10 years ago that I didn't pay enough attention to - and it has been hard to balance getting the therapy, etc. that I need with caring for my daughter and her siblings. It is really wearing and hard to even explain to other people, even though with respect to what others are going through it is small. These have been really important lessons, though, and part of what I've realized is that I need to help my daughter navigate independently and/or know who else she can rely on in her world. It's been almost three years and I think we're making good progress.