Fatigue

Lately, I have been feeling some fatigue setting in.

I don’t know if there’s really a word to describe it. Caregiver fatigue or caregiver burnout feels far too overstated for what I am feeling. I mean, in the grand scale of things, the level of “special needs” or “disability” that we deal with in Stinkerbelle’s case are by no means even a fraction of what many parents of special needs kids deal with on a day-to-day basis, so comparing the two does their hard work and more urgent struggles a disservice.

However, I think in both cases there are often challenges that come with adjustments in routines and schedules and whatnot as children change and grow, and in that respect, there is a little bit of similarity. On that level, I understand the fatigue.

I’m feeling a bit snowed under by all the “homework” we have to do with Stinkerbelle. Some of it is homework, and some of it is work that we have to do at home. Both take time, and planning, and effort to get done. We have homework for school, assigned and expected and graded. And we have work to do at home for speech therapy, to help reinforce work and strategies and whatnot, as well as work at home for occupational therapy, to train her body and muscles and mind. It’s a lot. And I am feeling a little stressed at trying to manage it all.

Given that it is just the start of the school year, as with most parents, I am sure it’s just a matter of adjusting to the new demands and schedules. I need to get used to the volume of stuff we have to get done in the limited amount of time we have. I need to learn when things need to be done and for what days, and what things are a priority and when. I need to get myself into a rhythm, a routine, so these things come more naturally.

But, aside from the struggle of just learning how to fit it all in, we come hard up against some of the problems that Stinkerbelle’s developmental issues present.

One of the struggles I have is adjusting my expectations. I need to bear in mind her capabilities, and be conscious of what she can and cannot do at this time. And I have to learn to adjust what I can demand of her accordingly.

It’s hard not to have conventional expectations of her, to expect, for example, that once she learns something that it will forever be part of her knowledge that she can draw on at any time. Her brain does not work the same way an adult’s does. And, as far as that goes, her brain right now does not work in the same way that many kids’ brains work. But I find myself expecting it to.

Let me illustrate.

If, for example, she learns a word on her spelling test — if she learns that word and can tell me how to spell it, and can write it, and can get it right on her spelling test — there is no guarantee that she will be able to draw on that knowledge next week and be able to spell or read that word again. Last week, she may have been able to identify and write the word, but this week she may be back to ground zero, as though that word is completely new to her. But two months from now, it may show up again without any effort at all. And, as far as we can tell right now, there’s no pattern or rhyme or reason why.

Her brain files information away when she learns things, but retrieval is sometimes hard. It’s as if her brain is an office space. The person responsible for filing information can do it, but the person you send next week to retrieve that file has no idea where that information is found.

Towards the end of the summer, we began working in speech therapy on some basic blends: th, sh, ch, wh, ck, and ng. And she was able to identify and read them all, easy peasy. Now, a month later, even though we’ve worked on them since that time, she can barely recall that there is an h in a few of them, or thinks they all start with an h. And today, in one of her occupational therapy sessions, she’s begun writing her h backwards.

She’s been able to write the letter h for the better part of a year.

So, let’s take that to the times where we are doing some form of homework, be it for school or for therapy. We do some reading, or some writing work, or some spelling. She struggles with these things we have worked on in the past weeks and months. And, despite knowing in the front of my brain that she is struggling to retrieve these ideas — the blends, the words, even simply writing the letter h correctly — I hear myself growing frustrated. I hear myself thinking and saying the wrong things.

I know you can do this.

We learned this last week.

Come on, you have done this a hundred times.

Now, Stinkerbelle is very perceptive. Because of her issues, she has relied her entire life on the clues we give off — the tone of our voices, the expressions on our faces, body language — to make sense of the world around her when she cannot make sense of the words being spoken to her. She uses them to gain confidence and feel like she is doing well when things are going along fine.

But on the other side of the coin, she KNOWS when we are growing frustrated, when we are upset, when things are NOT going well. We don’t have to say it. And when we do, it just adds to the pressure and the confusion and the upset she feels.

I’m trying, but I am human. And I am tired. And so is she.

And so when we get to that point, she will start guessing wildly at answers, or say “I’m never going to get it”, or dissolve in tears of despair and frustration.

She’s very smart, our Stinkerbelle, despite the problems she has. She KNOWS there is something wrong. And she cannot bear the disapproval.

It’s been a struggle these past couple of weeks, since school began. The sheer volume of extra work she has to do outside a normal school day — the increasing volume of information her brain has to struggle to file and retrieve — must be exhausting for her. And frustrating. And defeating when it does not come easily.

Imagine how she feels if she thinks I am dissatisfied or disappointed.

But, for my part, I am struggling and tired too. I have to fit that many more activities — assigned homework, writing, spelling, reading, plus occupational therapy exercises — into the time we have outside of school. I have to do it around the appointments she has. I have to fit in the sports lessons (swimming and karate) she’s taking this fall, because I think they’re also important for her development as a kid. And I have to allow her time to just play and do crafts and watch TV and be a normal kid.

Between 3:30 and 6:30. After she has had a full day of school, and is tired.

And I have to do it in a way that is fun, and positive, and sets her up to succeed.

I am struggling, right now, to make it all happen. I am not doing as good a job at fitting it all in as I might normally do (or as I hope to do once things settle down into a routine). And I find that my smile is brittle. My positive words are not as positive as they should be. And my expression, voice, body language are giving away my tiredness and frustration.

I have to do better. Stinkerbelle needs me to do better. And I am sure I will do better, once I get my ducks in a row and get into a routine that can get everything done when it needs to be. But right now, getting to that point is hard and it is tiring.