It’s like juggling 8 balls at one time desperately hoping one doesn’t roll away
There is not one day that goes by I don’t think of Ashlynn’s disability (ies). As a basis of comparison, I have my four year old son. He has some concerning behavior issues, and I do think (worry) about them often; however, I do not think of it EVERY SINGLE DAY.
Apraxia and dyspraxia make that impossible. There is always something else to worry about. Something else in which I don’t feel like I’m doing enough. Let’s take speech. Her speech is intelligible (hallelujah praise Jesus my baby has her voice); however she also has dysarthria, which makes her overall speech slower, and she has a language processing problem heaped on top of that, which makes it extremely difficult to express herself, even though when she does you can understand her now. She also has a lisp, which is pointless to work on right now because she doesn’t have her two front teeth. That will wait, but it’s still on the “to do” list.
Oh, but then there is dyspraxia and it involves motor planning issues with gross and fine motor skills, which in turn, affect ALL of her ADL’s (Activities of Daily Living). This includes: dressing, toileting, feeding, hygiene, getting her shoes on the right freaking feet, putting on her pants that aren’t backward, brushing her teeth without it ending up all over the counter, or showering and actually coming out of the shower cleaner than you went in.
I make her do all these things first independently, despite it taking 3x longer than her brother who is almost 3 years younger. It would be so much easier to just get her dressed or brush her teeth for her, or shower her; but I know with motor planning, EVERYTHING is going to take about 1000x more repetitions and because of that, I can’t let her slack. I can’t do it for her. I have to watch her struggle and sometimes cry for me to help her, and force her to do it because I know she can. There are nights it breaks my heart when she begs me to just help her put on her shirt and I tell her no. I tell her no for her own good. I know it’s hard, but the brain has more plasticity now and she has to learn how to do these things, and the only way to get better is to do it herself over and over and over.
I think about stuff down the road. How the heck is she going to ever be able to do her hair? She can brush it, but how do I teach her how to get it in a hair tie? These things will never come easy for her. She can’t even put a headband on straight. Should I buy a bra for her now and have her start practicing? The list goes on and honestly, at times, it seems endless.
I attended an executive functioning training recently, and many kids with global apraxia are going to have issues with executive functioning. They just are. Ashlynn is one of them. There are things to do to help. A lot of things actually, but they need to be put in place. A lot includes visuals, visual aids, etc. I sat through the entire training thinking about application to Ashlynn (I was there to apply it to my students in the classroom). I started stressing that I’m not teaching her these skills and if I don’t, there is only so much the school can do and she will be a mess as an adult. I need to start working on that.
Oh..but she has homework, and we need to work on that too because like with everything else, she needs about 1000x more repetitions than a peer and we are the only ones to help her get those reps in.
Seriously, I just don’t know if there are enough hours in the day. I texted another apraxia mom and I knew she would get it and wouldn’t judge me. I was right. She responded,
“There isn’t a moment that passes. I hate how consuming it is. I sometimes feel paralyzed by it.”
She reminded me that our kids our capable, but they require the BEST of us constantly to be successful.
She’s right. All of it. So here we are. It’s all consuming. I said not a day, but she’s right, it’s not a moment passes without being reminded Ashlynn has global apraxia. It’s not one area that’s affected. Sometimes I wonder what it would be like to just worry about the speech, or just worry about the motor skills, or just worry about homework or just worry about executive functioning, or just worry about language processing.
That’s not to downplay all the kids who have one or a couple of these problems, but it is to say that each problem adds an additional weight to my shoulders and sometimes it feels like I’m juggling 8 balls in the air and working desperately not to have any fall and roll away. How do I keep them all in the air? There is no answer….there is only what Michelle said…this disorder requires the best of us and not just sometimes, but CONSTANTLY so that we can be sure our children our successful.