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.

9 comments:

Anonymous said...

3 is a tough age. Are there others Apert's moms out there you can get support from? It sounds more typical of Apert's than adoption (but honestly, I don't know). What I do know is that Apraxia isn't related to intelligence, so Apple will one day understand what you are trying to do and not hold it against you. I admire your diligence with daily PT.

Anonymous said...

No, she will not hold it against you. It's good that she's so young while the worst of this must happen. It will end or at least get easier at some point. Memories will fade. And as she gets more functional she'll be able to enjoy some control over her life. This is just a very hard time. Carry on, warrior. You're doing an amazing job.

Anonymous said...

Can you use atropine eye drops instead of the eye patch? We used the drops with our daughter (adopted from China at 8 mos). Initially it was a bit of a struggle (started drops around 2 yrs) but she learned the drill and would drape herself across a lap to receive the drop.

Maureen said...

My 6 year old most likely has some unknown syndrome that effects his growth and physical development. He also has significant receptive and expressive language delays (but they weren't identified until this year). He has been in and out of physical therapy since he was under a year. I've worked with him since he was born (he was a 35 weeker with low tone, followed by torticolis by about 6 weeks). His height issues were at their worst at age 3. His head is on the large size for his age (95%), but his height was more than -3 standard deviations off the bottom of the growth charts. His arms and legs were proportionately short to his body (age eliminated, just relative to height). His hands and feet were more in the -6SD range. A month after his 3rd birthday he started an orphan drug that has helped, far better than expected. So now he is small, but not anywhere like before.

Ages 3-5 were rough. Really really rough. Around 5, he started to really understand, 'if you do x, in y fashion, you will get a star. If you get 30 stars, you will earn desired object/activity'. He wasn't able to understand the long term reasons why he needed to do exercises/activity (although I always told him). At 6, he is occasionally acknowledging the long term benefits, but typically yells at me that it is too much work. So I still use the reward system. I do not hesitate to not give him the reward until he has truly earned it. Even if it takes a long time. That was also the time period I had a small box of "special" toys that he particularly loved that he was only allowed to play with while doing therapy (i.e. he could only play with them in prone prop., or in prone over a wedge, or while standing on a BOSU ball, or while sitting on a therapy ball). I slowly introduced the idea of a special toy was given to him at the end of the session if he didn't cry/fight me. I too would worry about the attachment. I really really really feel the wear on our mother-son relationship because of me being the 'bad guy'. I live in as great as they currently come school district. I need(ed) to send him to school to allow others to be the 'bad guys' and to show him that others agree/support me (my husband works long hours, so he is not typically involved, and he caves relatively easily to crying/resisting). Him going to school is the best thing I have done for our relationship/attachment (sorry, I know that isn't what you want to hear. I know that plenty of parent(s) have homeschooled special needs kids and not had problems with relationships because of the pushing that needed to be done, but that wasn't my experience).

Have you looked into iPad apps to help Apple communicate? The studies that have been put out on using augmentative communication devices show that if anything they encourage the development of spoken language (because it shows the child that using language has tons of positive rewards). There are some free/cheap simple apps, then there are more expensive involved apps. From what I've learned, Apple (the company) has more by far of the better apps for disabilities. There are several organizations that give free iPads to kids with disabilities.

Anonymous said...

Apple can walk. Why is she being forced to practice crawling?? I'm a former gymnastics coach, for both recreational (including a few with physical/mental disabilities) and competitive gymnasts, and I'm struggling to think of any snippet of body strength that can't be developed by some exercise more age-appropriate than crawling. You've mentioned in previous posts that Apple is quite smart and notices and understands what's going on around her. I expect she's noticed that other kids who can walk aren't being forced to crawl. I can't imagine a perfectly normal 3 year old, who's lived with her biological family since birth, not objecting to repeated demands that she crawl, so why shouldn't Apple object? She doesn't want to regress, she wants to progress, like any normal 3 year old! You've been confident enough to challenge "experts" in the past, and I really think you should consider doing it again re this crawling business.

K said...

She needs to crawl. She needs to develop the muscles in her upper back and arms. She also needs to be in the all-fours position while doing a task, like putting blocks in a bowl, taking turns and balancing on one hand and arm. Essentially, anything weight-bearing on her arms and hands. Her ability to crawl was virtually non-existent until she learned to walk, then she understood the alternating pattern her legs must make in order to crawl. On top of this, she needs to be in the all-fours position and hold her head up so she's looking forward. Her neck, and again, her upper back muscles are extremely weak. She can't even catch herself if she falls. She lands smack on her face. No, I definitely agree with the experts on this one, and I, too, was a gymnastics coach.

Thank you so much for offering your help, though. If you can think of anything weight-bearing for the arms that doesn't require any kind of grip, I'd appreciate it.

Anonymous said...

I wonder if you could come up with a few of your own signs, that Apple would be capable of doing, to help her communicate. You could just make sure that those close to her (you, therapists, Sunday School teachers), understand what the signs mean. I used signs with my kids (some bio, some adopted, none with the physical limitations that Apple has) and it really helped them to be less frustrated at not being able to communicate. This could help Apple to "move on" in some areas, like potty training, for example, where she might be ready to go, but another area of delay, in this case speech, is holding her back. You could make up the signs yourself based on what she can do, and I would guess she would learn them quickly and use them correctly right away. Just a thought.
I enjoy reading your blog and admire the tasks that you are taking on. You can do it!!

K said...

I think that all kids and parents have their own signs and signals and gestures as do we. But, Apple spent 19 months in an orphanage, mostly in a crib, so she learned not to ask for anything very early in her life. Believe it or not, it's very hard to teach a child to ask for what they want or need when they learned from the start not to do that. We continue to work on communication of all sorts.

Anonymous said...

Oh dear. Is the apraxia related to her adoption or her Aperts or is it just a coincidence? I don't know anything about apraxia. Is it trauma related?