I've read loads of little article-type thingys of late (no really, they are popping up everywhere) on things you should know about parents of kids with special needs. I say thingys, because they are mostly trite and annoying and on the saccharine side. (They just **love** their kids so much more, they are so selfless and attentive and self-denying and super-hero-y, blahdy blahdy blah). Now, I'm sure that many parents of tots with high needs are, in fact, super hero-y. I am not one of them. I"m about as far from a super-hero parent as one could get, I'd imagine. And I don't do saccharine so well. It's mostly irritating, and more than this, I find it disingenuous. And even more than all of those things put together, I find it not helpful.
Parents of kids with more intensive needs than most don't appreciate the love of their kids more than anyone else, but it may be true that they may hear those expressions less than other parents. Parents of special needs kids don't love their kids more than other parents, (or likely any less either, but the article thingys would never suggest such a mercenary thought anyways). And we shouldn't be congratulating any parent (or any person, for that matter) for being self-denying. Self-denial is a one-way trip to crazy-town, and it does neither parents nor kids any good in the long run. (It would be nice, instead of putting parents of tots with high needs on a pedestal, to instead perhaps critique the social structures that require these parents to deny themselves in order to just get by on a daily basis. Not good. And utterly preventable. Just sayin').
Parents of kids with special needs *are* probably more tired, more guilt-ridden, and definitely more isolated than other parents. The tiredness bit - well - obvious, yes? It is also the easiest of the three to deal with. Tiredness we know, can count on, can learn how it contours and shapes our world and our reactions, and then in turn, we do our best to mitigate and counterbalance these things. Sometimes the tired is from lack of sleep, and this will of course differ from person to person, but for me emotional drain is the bigger part of this equation.
Guilt, of course, ties into the emotional drain bit (must bloody everything in the world be cyclical, I ask plaintively?). I feel guilty all of the time. ALL of the time. For not doing enough. For not reacting as well as I could have, should have, want to. For passing on my crap genes full of anxiety - the sad and anxious memories that seem to live in my blood. For writing this down. For sharing it. For fucking up the semblance of stability and normalcy(whatever that means) my bubs had. For following my heart when it makes their world busier, more complicated, wonkier. For not managing to balance the very differing needs of my very different children. For all of it. Now I'm not saying that I'm a crap parent. I am in fact, emphatically *not* a crap parent (though to be sure, I have my days). I am saying that when you have a child, or children, that can really struggle with the world (sometimes or all of the time and for myriad reasons), who feels things more intensely, who reacts to change more intensely, who are - in a nutshell - more intense - the feelings of parental guilt are likewise - more intense. For all kinds of reasons that make all kinds of good sense (even though 'sense' is not a currency we always get to function in from day to day).
But really - it's the isolation that's a killer to deal with. And it comes from a variety of sources.
You feel isolated from other parents (which blows because parents tend to comprise the support network of other parent-folk) because as much as you want to commiserate about their parentings trials and tribulations, you also catch yourself swallowing responses like:
"I'm sorry, but, YOU ACTUALLY CALL THAT A FUCKING TANTRUM?!" Ahem. I have, on occassion, experienced some serious rage induced by another parent saying "Yeah - I totally know what you mean" when I know damn well they don't. Can't. It's nobody's fault (and it's meant in the spirit of commiserating in the 'yeah this shit is hard' way) but there are times when people might as well be saying, "Hey! Red and green are totally the same thing. They're both colours!"
Of course parenting is hard. It's a difficult gig, no matter what. And of course, we *want* to have empathy. But sometimes, when your experiences of parenting are so far apart, it's kind of hard to feel like you have memberships to the same club. Because in some ways, ya don't.
It's also a titch on the difficult side because when other parents don't experience the same intensity of experience as you might, folks tend to think your small person is reacting so, um, strenuously, because you must be doing something wrong. You might be a BP (Yup. A Bad Parent.) This is especially true when your child's challenges may not be as visible or immediately outwardly discernable.
AND enter the advice. Advice like - use time-outs. (Um - should I also padlock the bedroom door? Cause that's the only way that particular tactic would work). OR try earlier bedtime/later bedtime/more exercise/less tv/less sugar, gluten, food colouring/more alone time/more together time/try a firmer hand/be gentler/read non-verbal cues better/try Montessori, Waldorf, meditation, yoga/try drugs/don't try drugs/maybe it's this/maybe it's that..... and so on and so forth. Meant to be helpful. Of course, meant to be helpful. Meant with love and kindness and compassion (and sometimes a little tiny bit of 'I know how to do this better than you' cause we parents like to feel that way sometimes). But ultimately - they might as well be telling me to try standing on my head and bleating like a goat and weaving on a loom. This will be a process. Possibly lifelong. There is no magical 'thing' to do - other than what we are doing - learning what works and what doesn't and doing the best we can. (Though if I thought standing on my head and bleating like a goat while I got busy loom-weavin' would help - I'd give it a whirl).
Possibly the worst part of the isolation though, is the trying very hard not to talk about it. I know you're all ha-ha-ha'ing here, because I talk about everything, right? But the truth is, I don't. I really don't. Not even close. And I'm guessing most other parents in similar situations don't either. Why? Because you feel misunderstood. Because you feel guilty. Because you know people think it's because you're just doing it wrong. Because you know other people don't or can't understand and you seem like a big fucking whiner (BFW). (Complicating this last bit further, is that sometimes you feel like you might actually be a crazy BFW, because you have days, even weeks that are miraculously and beautifully calm and still and free and easy. But then, you always come back to it. Something triggers and the rough patch starts or something big has been happening at school without you knowing, and then you remember that you are not crazy. It is so hard to speak about it in ways that people can hear, in ways that do not make you feel you like you are bad-mouthing your own child, whom you love more than any being on this planet and for whom you would move mountains to make this planet a kinder and gentler place, in ways that do not make you sound like a BFW, and a BP to boot. And because we generally already feel like BFWers who are BPs, my guess is most parents in these sorts of situations err to the side of keeping their mouths shut.
And I guess those are the things I'd put in an article, you know, if I were to write one, about what you should know about parents who have high needs littles.