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Monday, November 5, 2012

Tired of feeling this way

I haven't written in a few days, because I was going with the old saying---"If you don't have anything nice to say, don't say anything at all."  I don't really have anything mean to say, but I don't have anything nice to say either.  I've been depressed for a bit now.  There are days I feel better, and days I feel worse, but overall, I've had my particular brand of depression, which mostly involves having very little energy and sleeping a lot. And yes, I have a doctor's appt. next week and I will talk to her about it, but it's not the kind of depression that I think much can be done about, besides things I've already tried or am already doing.  It's situational depression.  I'm depressed about specific things, and of course high on the list is Janey.

Not Janey as a person.  I'm not depressed she is herself.  I'm depressed, I think, because I feel like I've missed some boat in helping her.  I think I've been reading too much about autism---just following news leads in my Google news section about autism.  I missed the early intervention boat on her.  It doesn't help me feel better about it that she wasn't autistic then, or if she was, it was a pretty subtle thing.  I remember her PT saying how amazing it was how social Janey was, how much she talked.  I know then she eagerly greeted the PT every day.  I don't think about things like that a lot.  Sometimes I like to almost forget those first 3 years, to tell myself that Janey NEVER could talk like that, because lately, despite all the years that have passed, her horrible regression is upsetting me more than it has in a long time.

The only reason I can figure this is the case is that Janey seems to be in a plateau right now, or maybe even another regression.  Her talking is not good lately.  She is saying less and less, and what she does say is getting turned into shorthand a little.  For example, the phrase I hear most often at home is "Snuggle on Mama's bed!"  It's her response to any kind of upsetting thing happening---a scary part in a show, a reprimand of any kind, or just some impulse from inside that bothers her.  But now she's mushing the phrase together, just looking at me and saying "nuggmamaba" or something like that, like that whole phrase is too much work.  It's like every word costs her a lot of money, and she's a saver.  For years and years and years, when I leave her in the morning at school, she gets told to say goodbye to me, and she just about never does it spontaneously.  Once she's reminded, she'll say "Bye!"  Then someone will say "Bye WHAT?" and she'll reluctantly say "Bye, Mama!" or something Bye someone else, if she's not in the mood to remember the right name to call me.  And lately I'm just wondering those useless questions---WHY?  Why is it so so so so hard for her to learn things?  Why does her talking never really progress?  Why if I look at reports or my own blog from 3 or 4 years ago, is her talking at the same level now it was then, or less?  Why does she still often have crying spells where something is obviously badly bothering her but she can't tell us why?  Why does she not progress?  WHY ISN'T SHE GETTING BETTER?

Isn't it supposed to work that way?  Isn't even autism supposed to follow those rules---you start at one level, and with a lot of work, you get to the next level?  And Janey doesn't.  Or she might in small ways, but not big ways.  And around her, other kids with autism do, other kids with other delays do.  I am confident she has the right teachers, the right therapists.  I am even confident, in my better moments, she has the right parents and brothers, that we are doing the right things, the things that should make her able to learn.  After all, we raised her two brothers so far rather successfully.  I know she has autism, I know she has retardation.  But that should not stop her from being able to learn.  Or should it?  I guess I know sometimes it does.  I've read the rare book that does admit that---that's it all not a guarantee in any way, that some kids don't progress.  But, and I'm letting the inner thoughts out here---why me?  Why Janey?  And of course, the answer is Why Not?

So probably I should have taken that good advice and not written if I don't have anything positive to say.  I'll think of this post as what I guess blogs can sometimes be---a diary other people can read, if they are in the mood to get depressed.  And I'll buck up soon, I promise.


Sophie's Trains said...

I understand how you feel exactly. And you know what? Don't apologize for feeling this way. Regression is hard! It is horrifying and nothing that we as parents can ever prepare for or accept. My Sophie regressed profoundly. Where she was a year ago, she is nowhere near now. And it hurts. And I find myself missing THAT little girl, even while loving the one I have now. And its not fair. And you know we caught it early, and there was still nothing we could do but watch her slip away... Damn it, it sucks.

audball said...

First of all, you shouldn't feel the need to apologize for *anything* - this is your blog. Janey is your girl. You (and only you) know what you, Janey, and your family are going through. Your readers are here to help you, in much the they way you help them :). Please be kind to yourself; you have lot on your plate and being the support system for a whole family is difficult in even the best of times.

My girl used to "shortcut" her way through communication because she was tired - very tired dealing with school and therapy. Home was her "safe place", her sanctuary. Words are work! Because we understood her so well, it was easier for her to get by with short sentences, miming (of sorts) and sometimes, yes, even yelling. I found out from visiting school just how tiring it was for her. I spoke to her teachers and found out that she was having difficulty with the more complicated directions in class. Kids were now noisier in class, so it was harder for her to block out their background chatter in order to focus and concentrate.

Is it possible that Janey is dealing with something more challenging at school? Have her teachers seen any difference in her communication skills too? Sometimes we see a regression at home, but it's really because our children are stepping up in other areas.

I used to try to use humor to eek more out of my girl. If she was in a good mood, I would copy her lack of words and mimic or mime what I wanted her to do. She would say, "What?? I can't understand you?" and I would smile and say, "Hey! You *can* use your words!" :)

It's not easy because you (as the caregiver) have to be in a space where you have that energy to give (and be sensitive to ever-changing moods). I often think that we have to do as the airlines tell us: Breathe into your oxygen mask first, and *then* help those children near you. You can't help them unless you feel like you have the oxygen. Find out what you need first!

Kim said...

I'm with you...don't beat yourself up, you can't change the past. You really can't even change the present...