Friday, January 23, 2015
Update on Apple - The Hard Stuff
Apple turned 3 on Dec. 1, 2014. She doesn't speak. At all. At least, not until quite recently. She has speech therapy 2-3 times per week at two different places, and we work on things here at home every single day. Along with PT and OT. If she could talk, she'd tell you that PT and OT should really be called torture because that's how she acts when she has to do certain things, like crawl. Yes, just crawling on the floor like a baby brings on huge hysterical sobbing crying jags.
Speech? Well.... She can say about 5 words, but only says 4 of them spontaneously - sometimes. "I - am - duh - n," is what she says the most. "Xie xie," is what she's starting to say more regularly. That's all. She can say, "mama," but only when prompted.
She is diagnosed with apraxia. It's not that she won't speak, it's that she can't speak. Her mouth moves all sorts of ways, but not the way it needs to in order to form words. She can, at least, make sounds, but most of them are made using the mouth a bit differently that you and I do. She can make the consonant sounds B, D, F, G, H, K, M, N, P, S, T, W, Z and the short vowel sounds A, I, O, U and the long vowel sounds E, I, O (sometimes), U. Once in awhile she comes close to making a long A sound, but it's very hard for her.
The sounds on her speech cards that she can approximate, many with segmenting, are baa, whoa, boo, hi, bye (buh eye), peep (p ee p), up (uh p), pea (p ee), moo (m oo), bee (ee buh ee), and a couple more. She cannot say "baby" or even "beebee" or anything even close.
Thing of it is that she often thinks she's getting it right. When working on a particular sound, she gets frustrated and/or embarrassed, and/or tired of it all, so she avoids. Rolls her eyes, ignores, looks away, becomes restless, becomes obstinate, starts deliberately doing the opposite of what she's asked to do, like grabs the card instead of putting her hands down.
This impacts all kinds of things, like going potty. She can't tell us when she has to go, so she's still in diapers, though if we're home and in the same room, she's starting to point to the potty. We do have to be looking, of course, to see her do it and she is just now in the last two days starting to whimper to get our attention if we aren't looking. Of course, she still can't pull her pants down, though we're working on it like crazy. Try getting your pants down without bending your fingers. For that matter, try getting them back up!
PT - the crawling - is the worse because she's so weak. She's made a lot of progress, but she still has a lifelong battle ahead of her in many ways because of how she's physically put together. Therapy is necessary. I know it's good for her. But she doesn't. And she hates it.
All the hate, anger, frustration... it all comes down on my head. She blames me. Of course, right? I'm the mom and the moms always get the blame. Always! So I'm in the delicate position of keeping her attached, while, in her eyes, torturing her. Never mind that I'm on my hands and knees crawling with her, often with something on my back, like a real cat because Henry just can't resist a free ride, or Apple's piggy toy. I'm also crawling beside her with my arm under her trying to reassure her that I won't let her fall on her face and that I'll support her weight when she gets tired. This has never worked, but I gave it a great try for several sessions.
Our day comes down to this: Do we start the day with therapy and cry to start our day, or do we do it at the end of the day and end our day with crying? Or, can we cram it in the middle somewhere and hope that we can start and end our day with smiles and do the crying in between? Now that Apple is getting stronger, she has actually had two sessions without crying! Of course, as she gets stronger, we have to up the therapy, too, because she's no where near as strong as she needs to be yet.
Moms doing hardcore therapy with their kids and/or painful daily medical procedures know where I'm at. Who wants to make their kid cry every day? Not me. Yet it must be done. The therapist say to make it fun. Yah, right. My girl doesn't buy that any more. Probably because I was turning screws in her head and moving the back of her skull off the rest of her skull just 14 months ago! Not fun. Crawling when your little arms are sore and aching and your little hands have to stretch and bend in ways they don't want to? Not fun. Learn to climb when her fingers can't bend and she can't grip? Not fun, in fact, very scary, but it has to be done. Take socks off? Try it without bending your fingers and pretend you only have half a thumb. Try taking your shirt off with a great big head and extra short arms that can't raise up past shoulder height.
Gosh sakes, let's not forget the eye patch. Yes, Apple gets patched every day too. Fun with allergies because that poor lazy eye tears up and swells up in no time and then her eye lashes turn in and float in her eye. That's cannot feel good. Yet, if we don't, it means surgery for sure, but we can't have that surgery without the second skull surgery first, and we're trying to put that off to give the poor kid a break for awhile, because after that, it's time to do feet and more work on her hands, which means casts. At least she's stopped crying when I get the patch out. That's been a relief for about 5 days now. But how much is acceptance, how much is resignation? Is all of this damaging her spirit? I certainly hope not!
Outside of this, Apple is a clever and busy girl. She started going to Sunbeams, her little Sunday school/primary class this month and likes it a lot. She is beginning to point and gesture, it would be nice if she could sign, but again, her hands are missing a finger each and the ones she has don't bend and are very short, and her arms are just a little too short and don't come all the way up, so any signs she'd try would be hard to recognize.
I gird myself up, start each day with prayer, and hope that one day Apple will understand what all this is about and forgive me.