A short time ago I wrote this post about not talking to Pearlsky. I was actually shocked that I received so many comments and emails from other parents despairing how they don’t talk enough (if at all) to their disabled child. I am not sure if it made me feel better or worse to know that I was not alone in not talking, and not alone in hating myself for it.
Questioning ourselves in life is normal. How do I look? Could I have done better on that test? Why did my Turducken turn out more like a meatloaf? But then comes questioning ourselves as parents.
I think I suck as a parent. I don’t talk to her enough. Some days I just can’t get myself to put on her AFO’sbefore school. I’ve been known to give her Advil before school if I think she may in fact have a fever but is not really sick (yet). Bath? Oh yeah, everyday, sure. Varied diet everyday, right … but she loves Pediasure and is not hungry. I can go on, but I hear the footsteps of the social services’ social worker, and we know how I just love social workers …
I know I am not alone.
I’ve never done a sub-par job at anything. Or not at anything that mattered to me. So it’s hard to get over the fact that I suck at something. I totally don’t speak enough to her. I should to expose her to enough language input for her language development. Even if she won’t have any expressive language, it would be important for her receptive language. And sometimes when she just wants to suck her finger or chew on stuff I don’t make her play I just give up. Some mother I am.
So here are a couple of questions. Please answer honestly … I am hoping we all learn something. There is no “other” choice, feel free to speak out in the comments.
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This brings up certain metaphysical questions. That may be pushing it, but I love the word metaphysical… met-a-phys-i-cal … but I digress.
- what we perceive ourselves to be?
- what others perceive us to be?
- something in between?
And which one matters?
Please DO NOT leave comments on what kind of father I am or about me, that is not my point here (I know I suck 😉 ), the point is how we perceive ourselves; how do you see yourself? How or why does it matter (outside a court of law)? You can only do the best that you can do.
I am very honest when I say that others would (and do) give me an A in my Pearlsky Parenting class, but alas, I give myself a C+. It is interesting to further note that I am not like that in other ways. There are aspects in my life where I give myself an A, some in my professional life, some in my personal life (and the occasional D or F). But none of those things can be, nor are they, as profound as “she who must be obeyed.”
Just between us, sometimes I cry at night wishing I could do better.
Fascinating. I, too, would say that people give me an A, but I give myself a C. Which doesn’t mean that I’m average; it just means that I can be a pretty shitty parent to my Sophie. Sometimes I lie to agencies when I don’t feel like bringing her in to therapy. I tell them that she’s had a big seizure. Sometimes I leave her in her room for too long (I check on her appropriately) but she’s not being stimulated at all and sometimes just sits and mouths toys. I don’t engage her enough, either and feel perpetually guilty for not reading to her, playing games enough with her, etc. etc. Sometimes I even yell loud curse words when she’s seizing. I hate trying to justify all of this, too. I guess on the plus side, when I’ve acted really abominably I tell her. I apologize and ask her forgiveness. I whisper in her ear that I’m doing the best I can. The hardest thing that I hold inside is the feeling that I might have missed something — that if I thought about it a little harder, worked a little harder, that something would occur to me and her seizures would go away. Even though I know, intellectually, how ridiculous this is, I feel it. And I feel it strongly. For almost fifteen years.
What “others” are we talking about? People who know me – and try to deflect my attempts to talk about how I’m feeling with “but you are a great parent, I don’t know how you do it”, or those who don’t, who watch us in the street, as I hang on to my son for dear life(and occasionally resort to screaming or crying) as he tries to step into oncoming traffic because he doesn’t know to wait at the curb?
I think the people on the metro the other day would have given me an f as Dimitri screamed, kicked and bit, all be it while thanking god he is not their child. My view of myself is that I’m erratic to say the least. right now Dimitri is (yet again) watching a movie in the top half of the screen while I write this instead of talking to him…………
Elizabeth, I’m slowly starting to let go of the idea that I may have missed something, but every now and then it comes back and hits me like train an I feel physically sick.
As I’ve stated before, there is a disabled little girl in our lives but I do not raise her. What I do have are three perfectly ‘normal’ children who remind me everyday just how inadequate I am. I suck at this parenting thing. Severely lacking in patience, temper control and understanding. I could do better almost every single day. Sometimes, if I’m being honest, I just don’t like them. Love them with my entire being, but don’t like them when I’ve had enough. I feel guilty when those thoughts come up but powerless to stop the feeling. It’s hard to have a job where there are no breaks. Even when they go to school or daycare, your always on call or worrying about something, always. Nobody will ever have another job where the responsibilities are so all consuming as parenting, let alone parenting a disabled child. No matter how well you do in other areas of your life, being a mom/dad will have the best of us buckling under pressure. I may be far from perfect, but I’m here, doing the best I can and I believe that is what being a parent is all about.
I like Kellie’s answer! On a more practical side, there is the issue of burnout. Whereas “normal” kids grow up and slowly but surely carry on by themselves, not so with severe disability. You have to be “on” all the time and feel responsible for their stimulation because they can’t do much on their own in that regard. If they can go to school, that’s a good bit done there (supposedly/hopefully). If they are at home…different story. This is where help comes in…and where most don’t understand…good help is more than just a physical break. Good help comes in with fresh ideas and enthusiasm…something lacking in those who have little sleep and high stress. I am VERY lucky in this regard. Two of our three helpers are superb with giving my daughter stuff to do, to see, to experience. I myself find this area challenging and rely heavily on my Montessori training…it just doesn’t come naturally. Anyway, in an ideal world then, there would always be funding for help…which would go a long way in making parents feel better about themselves.
Oh yeah,…and for those of you beating yourselves up about your parenting, let me give you examples of poor parenting: the kid whose nurse spent part of her time keeping bugs from crawling into his tracheostomy…
The kid whose dad ran off with the funding money and never came back…
Our little roomate in hospital for three months, whose parents send him to school no matter what and let the school officials call 911 if he has a fever or seizures, who never worked at retraining his swallow so that he has a trach for the rest of his life, who put him in his bedroom the minute he comes home from school and from which he does not leave until school the next day, who have almost 24 hour support because they can’t/won’t care for him themselves, who put him in “respite care” at least 2 weeks out of every single month so that he’s out of the house (during which time they play the slots), who was put on a waiting list for residential care at age 9 so that he would guaranteed be in by the time he was 18…Do they love their kid…yes they do…can they parent him…no they can’t and don’t.
You people are nowhere near this sort of thing.
I think others would say I am a great father to my two sons. I would say I am a terrible father and that I spend several moments a day, OK many, feeling guilt and negativity over how much better I could and should be to them.
As for who we are? We are the product of our own self-perceptions. The power of positive, and negative, thinking all comes from within ourselves, and if we view ourselves in a negative light, all the positive reinforcement in the world will not, at the core, change our perception of who we are.
It helps sometimes, but it doesn’t change it.
Here’s an example of why I suck as a Dad. Bennett, my youngest, the disabled one, is downstairs crying constantly, wailing because he doesn’t feel well. After spending some time trying to hold him, trying to comfort him, trying to figure out what the fuck it is that he wants (since I cannot communicate with him) I finally just walked away and came upstairs to my office to get away from the screeching. I can hear him down there, screeching, and I’m tempted to put some headphones on.
Yeah, my wife is down there, dealing with it. And I’m up here. So I get a double award…I’m a shitty father AND husband, and pretty much no matter what anyone said to me right now at this moment I am defined by that, because it is such a powerful thought coming from within a mind that is besieged with emotions it cannot process effectively sometimes.
Now granted, I read some of the comments and recognize that I am simply being too hard on myself right now. If the screeching turned into something else I’d be flying down the stairs so fast you might not be able to clock my speed.
But that’s me these days. I beat the shit out of myself cause it’s comfortable right now. Make any sense?
Great post as always.
Others give me high marks and I give myself low marks. I think those of us who have handicapped children know how much of a grind it is. It’s not that we don’t love our children but rather that raising them is so hard.
I talk to my daughter, not because I want to but because she makes me, all day long. She never stops, ever. It’s too much. So I ignore her sometimes, or yell, or swear, or cry or take her for a very long drive. So I give myself low marks I guess because I’m human and I get tired. Mostly it’s just tiring. And then I feel quilty.
You really had me thinking with this post. I didn’t comment right after i had read it, but rather, i consciously ‘observed’ myself for a day to see if I really am as bad of a parent as I usually feel. And I’m not. I usually feel guilty that i’m not doing ‘more’ for Izzy’s development : that i don’t talk to her enough, don’t stimulate her enough, don’t make her do her little work-outs enough. But in reality, there is a rather wide gap between how I feel and what and how much I actually do. I think it’s because I feel a constant pressure to be her physio- and occupational therapist, baby stim specialist, and nurse. While typical babies don’t need therapy and extra special treatment for their development, disabled children do, indeed. Due to Izzy’s disability I feel a sense of urgency to sort of ‘make it happen’. But if you take that kind of responsibility on yourself, you will always feel guilty if she is not doing as well as you suppose she should be.
Being a good mum is maybe the only area of my life in which I think I am the best I could possibly be. Of course I’m not perfect and often feel guilty that I don’t do enough for my son. For me that would be doing things like: playing with him when he is well, making more of an effort to get him to eat orally, talking to him more often (and lots more). But I absolutely know I am doing the best that I can, that if I try to do more than I am able then I will make myself ill. I get frustrated – especially when he is well and needs more stimulation than I can give but rather than give myself a hard time, I get angry with the powers that be who should give us more support.
Thanks to everyone for the great comments and the honesty. This stuff is not easy to say, to think about, or to admit.
Kudos to Lynn, “doing the best that I can” is, in it’s own right, magnificent.
In one way or another, I think we all rise to the occasion and do what we can and what we must. But boy, does it suck sometimes.
I’ve just started reading this blog (yesterday) and I am most of the way through the year. You are an extraordinarily compelling writer. I wandered over here by an indirect road from the infertility blogosphere. I realize you don’t specially want to hear this, but while I (and others in my position) whine about our crosses, your loving and selfless (if, apparently, occasionally imperfect) example makes clear how self-indulgent I really am.
I was prompted to respond to this post because, honestly, it was a relief to read it. I’m generally healthy but have hormonal imbalances, consequently fatigue (I know how trivial this is); I work 40 hours a week but feel that I can do little else. And with the pictures of your home, and all the things you’ve set up, and your schedule, and everything, I was starting to have doubts; I must either be reading about the life of a member of a master race, to whose stamina I could never aspire (at half your age), or you must really be demented/obsessive and about to snap. So reading this is a relief – because I couldn’t understand how you could do all the things you do without ever an error or a lapse in only 24 hours a day. I screw up plenty of things in my life. Regularly. I don’t have kids to screw up, but if I did, then I’m sure I would do something scarring every day, despite my best efforts. Certainly, I screw things up for the people I love, who would appear to forgive me. Extraordinary as your story and Pearlsky’s is, it is more compelling if you’re human too – OK, this is a psycho comment. Sorry, it wasn’t meant that way.
Let me attempt to redeem myself: I thought of something in response to one of your older posts. I haven’t had unmedicated menstrual cramps in years (they basically meant a day in bed moaning), so I didn’t remember immediately, but they felt JUST like really bad gas cramps. Like as bad as you can get gas cramps from something that absolutely does not agree with you, without having anything medically wrong with you (i.e., no ulcers, ulcerative colitis, celiac’s, IBS, cuts or damage to the intestines, poison, flu, nausea, or, my personal favorite, intestinal scarring). Feels the same (to me, it did). Except that gas cramps don’t respond to pain relievers, and menstrual cramps do! But that’s as close as I can get you, because I’m pretty sure menstrual cramps are an involuntary cramping of the cervix, and if you ain’t got one, you ain’t got one.
Look, I came here yesterday via link and started at the beginning and haven’t stopped.
You get it. You totally get it.
I try to explain to people what it is to have a disabled child and they don’t get it.
I agree with the above commenters. Others will often give me an A or B rating. But I know what I *don’t* do for my child and that leaves me feeling like a F rating.
I love my kids but sometimes I just tell all of them “SHUT UP. LEAVE ME ALONE for FIVE MINUTES.”
Could I push more and more for the vision and hearing therapy that the BOE has written into her IEP but can’t seem to get a provider for? That I should give up my job and take her out of school to take her to a center that is only open from 10-3 for those two services?
Also I’m a shitty parent for yesterday trying to help my disabled child focus on the task at hand while at the same time her “normal” younger sister started running around wildly with a friend. Said friend’s grandmother then insisted that I *needed* to control the younger sibling right now. So you see, I’m a shitty parent for not being able to be there for both of them at the same exact moment.
You see? You get it. I don’t have to explain it to you.
From the comments I read I guess this is different for parents with normal kids. What I see around me, and what I feel myself parents of normal kids are very judgemental towards one another, we all think that we’re doing the right thing and they’re doing it wrong. (spoiling the kid(s) too much/little, putting too much/little pressure on the food intake, etc.)
Though I think besides the judging others part every one of us sometimes feels like a shitty parent: when you lose your temper, when you’re 15 mins late at daycare, or when you replace the non-eaten breakfast by a chocolate chip cookie.
With a disabled kid there’s just more things you can beat yourself up about, cause you’re not just parent, but also nurse, teacher and whatnot.