In Which Connor Gets Undressed

Connor has learned a new skill.

He has been cultivating a habit recently of playing with his right shirt sleeve.  He'll grab the cuff of his shirt with his left hand and pull his right arm up and down inside the sleeve.  I believe it's probably related to his sensory issues; this is yet another way to "stim," as his therapists would put it. 

Well, today he figured out that if he pushed out against the sleeve with his left hand and pulled his right hand all the way in, he can get his arm completely out of the sleeve!

I have mixed feelings about this.  On the one hand, it's the first step towards learning how to undress himself, which would be a major step towards independence.  So I'm pretty happy about that.  On the other hand, he has no idea how to get his arm back in the sleeve, and he's now doing it all the time.  Once he gets his arm out, he'll fuss and whine until I put it back in for him, and then he'll immediately do it again.  That's right: it's become a game.  Horrors.  And there is nothing I look forward to more than constantly redressing my child-- particularly when it's extremely cold outside and/or we're in a public area.

I have similar feelings about his other new habit.  He has started grabbing the collars of his shirts, pulling them up and then licking them.  Hence the gigantic wet spot on his shirt in the pictures; he's just up from some quiet time so he had a while to work on this particular outfit.  The kid is extremely defensive about what goes in his mouth, so any voluntary exploring on his part in that area is amazing progress.  However, he's soaking through a lot of shirts, and he's really good at ripping off bibs.  Also he's tasting my shirts too, and on occasion my bare arm.  There's nothing more fun than watching a stranger who's trying to make small talk with you attempting to ignore the child who is blatantly licking your shoulder.

That's progress for you!

~Jess

In Which Connor Gains Some Skills!

As you may or may not know, Connor used to be tongue-tied.  Ankyloglossia is the technical term for this, if you'd like to look it up.  Basically the little band of tissue, called the frenulum, under his tongue was too tight: so tight that he couldn't even stick his tongue out of his mouth.  Due to the wide variety of other medical issues we were dealing with at the time, we waited until after he was two years old before we had it corrected, so he wasn't able to really move his tongue around his mouth at all until he was two.

That just makes his new habit all the more adorable. 

Whenever Connor is concentrating very hard on doing something now, he sticks his tongue out.  And not just a little bit out, but way out.  Think Michael Jordon.  Anyway, it's really, really cute and it makes me giggle every time I see it. 

And we've been seeing it a lot recently, because the little guy has been picking up some new skills!  One of the things that's new is that awesome torso twist in the picture above.  Think about all of the coordination this involves; he has to see and focus on the toy, twist his torso, reach across midline, and push the yellow button (the green one only sounds one note, and he wants the toy to play music) to get the toy to play.  He's pretty accurate!  The torso twisting is his newest skill, and it's really exciting because it means he's really getting comfortable coordinating his movements!  He much more confident about twisting to the left and using his right hand than he is about twisting to the right and using his left, but maybe that skill will also come in time.

He's also making some big jumps on the sensory front!  Check out this video-- and that adorable tongue once again-- of him playing with a vibrating pig toy while sitting on a swing at physical therapy today!  He hadn't quite figured out how to activate it yet; he knew exactly where the button was but he kept trying to grab it and pull instead of pushing it so he needed a little help initially.  By the end of the PT session he was really jamming on that button, though!  He also very quickly figured out that if the pig giggled before it started vibrating, than it wouldn't be playing music and he needed to hit it again.  This is extremely encouraging not just because he's allowing both hands, including that super-sensitive left hand, to rest on the pig (a task that would have caused a total, teary-eyed meltdown a year ago) but also because it demonstrates that he's problem solving.  In the past it's usually taken him a couple of weeks to figure out how to activate a new toy even with coaching and reinforcement, but today it only took him about forty minutes! 

I can't wait to see what he's sticking his tongue out about next!

~Jess

In Which Connor Has A Close Call

Yesterday morning I sat Connor up on the futon while I got his backpack ready for school. He sits very well on the couch with one pillow on either side of him, and in the past he hasn't been wiggly enough for there to be any issue. Well, there was a pillow propped up on the edge of the futon, and I ducked back into his room for a second to grab his socks. When I got back less than a minute later he was on the floor, propped up on that pillow and giggling away!

Since I don't think he's discovered teleporting yet, evidently the pillow was placed perfectly so that when he slid down off the futon it formed a gentle ramp all the way to the ground. Needless to say my child will no longer be sitting on the futon-- he'll spend his time in his feeding chair or floor positioner! It's crazy to realize that he's moving around enough that we have to think about this sort of thing. Thank goodness the pillow was there and positioned just so, or we might have had a very sad morning!

I hope Connor's guardian angel gets a pay raise for that one.

Though maybe it was teleportation after all; perhaps Connor was honing his secret ninja skills. We figure the child is going to grow up to be the perfect assassin or spy, because he has no fingerprints. None. There are no loops or whorls; the large lines we all have that crisscross our palms just continue on up to the tips of his fingers. We figure this whole severe gross and fine motor skill delay thing is just an elaborate cover up so that can move about undetected. If I come out in a couple of weeks and find him balanced on the ceiling fan or something our suspicions will be confirmed.

At any rate, no harm was done, but we'll have to start seriously thinking about childproofing the new house. Connor's rolling over pretty well now and he's very, very close to sitting, and so while he's not mobile right now he might very well be that way in a few months! Since we'll be replacing most of the carpet in the house with a more wheelchair-friendly floor, it will be much less forgiving if he falls down on it. Everything's a trade off, I guess. It's so exciting to think about him being able to reach things himself, and even more exciting to think about the possibility of him being mobile, even if it is a more unusual way of getting around like rolling! Six months ago both those possibilities seemed miles away, and now they're just on the horizon. I can't wait to see what he'll be doing in a few more months.

Speaking of moving around: Jer and I now have the dance of getting both he and Connor in and out of our new van down to a science. First I pull Jer (his shoddy wheelchair tires get no traction) up the ramp straight back into the van, where we stop and he puts his feet down. Then I rotate him to the left and he pulls forward into the front passenger area. Next I pull Connor up the ramp past Jeremy and rotate him so he's sitting in his wheelchair just behind the driver's seat. Finally Jer rolls back next to Connor in the rear passenger area and puts his feet back up. After I attach all the tie-downs to the chairs and Jer puts his seat belt on, we're good to go! When we first started doing this it would take us almost twenty-five minutes to get into the car. Now we've cut it down to around five. It's all about practice, I guess!

Things aren't quite so different or scary any more; we're starting to find our way.

~Jess

In Which I Formulate A Plan

I have a tentative plan for tomorrow. In the morning I will wait as long as I can stand it here, and then drive down to the hospital, put Connor in his wheelchair, and roam the halls aimlessly until I either get a phone call saying Jer is here or it's more than an hour past the time I know he's supposed to be here. If I get a phone call I will immediately go to his floor and see him. If I don't get a phone call I will pick a random floor, go up to the nursing desk, and refuse to leave until I am directed to where he is in the hospital.

This is of course provided his plane isn't diverted to, oh, Guam or something because they determine he must have a coconut crab (WARNING: Do NOT click on that link if you are at all afraid of land crabs the size of small dogs) to wear as a therapeutic hat. Hey-- after the kind of week I've had I totally believe it could happen, though I hope it won't. A coconut crab hat would be kind of terrifying.

Um, anyway this morning I took Connor in for a g-tube change. This was the first time I'd changed the mic-key button, as he's only had it since May, so I wanted to make sure I was already in the doctor's office in case there were any issues. So our GI doc watched me change out the tube (which was easy but made a terrific mess) and we chatted about Jer and how the next few weeks are going to look. The old mic-key button probably could have lasted quite a bit longer, but it wasn't something I wanted to have to worry about, so I'm glad it's taken care of for another four to six months.

I'm slowly adding new words to my vocabulary as we find out more about Jer's injuries-- it always makes me feel better if I have a good understanding of the medical procedures and terms involved in whatever our latest crisis is-- and I feel like I have more of a rapport and receive more information from the doctors when I can rattle off terms like "bilateral open calcaneal fractures" instead of just saying "broken heels." Whenever we see a new doctor of Connor's I don't consider it a successful meeting unless they've asked me what area of the medical profession I'm in.

Hopefully by the time Jer gets here I'll be well on my way to becoming an expert in lower extremity trauma management. That's (thankfully) not subject matter we'd covered with Connor thus far, so it's all new territory.

Keep your fingers, toes and any other convenient body parts crossed that Jer is able to make it here!

Even if the coconut crabs are disappointed.

~Jess

Bear Hunt!

Connor enjoyed his Toddler Treasures storytime today! Here he is touring the children's library. They have LED stars on the ceiling that twinkle, and he was fascinated by them. He's looking at them and using his home sign for "light" in this picture. It was pretty darn cute. I gave him a couple of choices in reading material for the week, and he picked out a book about bears to bring home, which was a lucky coincidence as the theme for Toddler Treasures was also bears. We read a couple of books about bears, played rhythm sticks along with the "Going On A Bear Hunt" song, and colored a bear picture with crayons, among other things. We made a definite commitment to come back next week, as Connor had a blast! He especially liked the part where we climbed up and down the tree once we'd seen the bear because you had to hit the rhythm sticks together really fast, which is apparently hilarious.

Later in the afternoon Connor accompanied me to our apartment complex's gym for a workout. I was a little nervous about it, as this was our first trial run together and I was afraid he'd get bored and start protesting at the top of his lungs after five minutes or so, at which time I would feel obligated to leave. I couldn't take his favorite toy, the Spin and Sing Alphabet Zoo, as I have no doubt that the "bloop bloop bloop" of the jellyfish would probably cause the other gym patrons to snap me to death with their towels.

Luckily my death was averted as I found an alternative toy to keep Connor busy. He has this yellow spiky worm toy-- one of the ones we bought for his sensory therapy. I'll try to take a picture of it later. Anyway, the way Connor plays with this toy is pretty simple. He picks it up, extends his arm, and drops it off his wheelchair tray, at which point I'm supposed to pick it back up again so he can pick it up and drop it off again. Well, the worm has a loop at the top of his head, probably so you can hang him from something, and I threaded Connor's shoulder harness through it.

I was able to spend an incredible half an hour on the treadmill while Connor attempted to get this thing off his tray. He tried pulling it. He tried sweeping it with his hand. He tried banging it on the tray to see if maybe it would go through. After about six or seven minutes of working at it one way, he'd stop and stare at his hand for a while. You just see the little wheels turning in there. Then he'd try a different way. He didn't yell once during that whole time and not a single fellow gym-goer tried to maul me with their towel.

As soon as I was finished working out, I unhooked the worm from Connor's shoulder harness. He immediately got very excited. "Want want want!" he signed, staring at it. I laid it carefully on his tray. Grinning from ear to ear, he immediately picked it up and dropped it off the side. Victory was his!

We'll go for round two tomorrow.

~Jess

Library Storytime In Sign!

Tomorrow, Connor and I will be heading down to the Puyallup Public Library for our first Toddler Treasures Summer Storytime session. We'll sit and listen to a book being read, learn rhymes and songs, and do a craft. I thought it would be a really great activity for Connor (especially because it involves books, and you know how I feel about books) and that it would help continue to prepare him for preschool.

That's not the really cool thing about these sessions, though.

The really cool thing is that not only are they going to let me come in an hour early and meet with the children's librarian so that I can go over the book and song selection for the day to make sure I can sign it for Connor, but they plan to hire a SEE interpreter just so he can participate in storytime.

All I had to do was ask.

Actually, I just asked for the time to go over the book and if they would wear his FM system. They offered the interpreter entirely on their own. It took me a visit and a couple of phone calls to track down the right person to talk to, but once I got a hold of the children's librarian it was smooth sailing from there. She said it might take them a few weeks to find someone, but that once they do they'd keep them on as long as Connor wanted to participate in the story times.

I've been amazed time and time again by the lengths people will go to in order to make sure Connor is included as long as I work up the courage to let them know what he needs. Sometimes I have to force myself to do it, because my pride gets in the way or I don't feel right asking for special treatment-- I just have to remember it's for Connor's benefit and not my convenience and then I feel better about asking. Results like these remind me why I do it! This is a totally free program the library offers, and they're doing this entirely on their own merit. What a great library-- yet another affirmation that moving was the right choice for us.

I'd say my mood right now is somewhere around dazed glee. Bring on the stories!

~Jess

Breakthrough!!!!!

Connor absolutely blew me away yesterday.

We've noticed a pattern in the way Connor makes progress. Typically he focuses on either his physical development or cognitive development. Usually he'll make big strides in one area while plateauing or even regressing in the other area. He'll have a brief period of overlap where he either improves in both or improves in neither, and then he switches over to the other area for an extended period of time. I'm sure there's probably some official term for this kind of learning, which is apparently fairly common, but Jer and I refer to whichever skill set he seems to be making strides in at the present time as Connor's "focus area."

For the past two months or so, Connor's focus area has been in physical development. First Connor's sitting (with assistance-- his balance is still all wonky) improved considerably. Then over about about a two week period, he began standing and sitting down with assistance. As long as someone is holding his hands so that he can balance, he's able to stand now for up to two minutes at a time. About two weeks ago, Connor began learning how to "jump." It's the cutest thing in the universe, and probably a game just about every parent with a typically developing kid plays at some time or another. We grab Connor under the arms, say "Ready?" and he hunkers down like a little linebacker, a look of intense concentration on his face. "1...2...3....JUMP!" I'll yell, and Connor slowly heaves up with this tremendous effort. He would go, of course, absolutely nowhere if I wasn't lifting him up off the ground, but it's really, really cute and shows big progress.

Now, all of the sudden, he's switched gears. He's gone over a month without learning any new signs, and then in the past week he's learned three. He now signs "shoe," "jump," and my personal favorite: "please." He uses home signs for these of course-- for "shoe," as an example, he takes his right leg off the ground and waves it back and forth. But he gets his point across, so we're super excited.

As exciting as that is, however, I have some even better news. Four days ago, I bought some flashcards with pictures of animals on them, thinking that maybe I could teach Connor to recognize some of the more familiar ones. I know his new school will probably rely heavily on flashcards, so it's important for Connor to get used to them, and we've been having some more success with the PECS system, so I thought that maybe he was ready for them. I then spent the next few days holding up the picture cards one at a time and sounding like a complete and total idiot. "Cat. Cat. Do you see the cat? Here is a cat! The cat says meow!" I got bored after a while and started making up little stories, none of which were probably entirely appropriate. "Do you see the cat? The cat says meow, and it likes to shred Mommy's houseplants into little bitty pieces! Do you see the alligator? This is the animal Mommy thinks about getting for a new pet when she sees her destroyed houseplants. Alligators do not eat houseplants. Can you guess what they do eat?"

Connor did not seem terribly interested in these cards. He'd kind of look at them for a second, and then go back to studying his hands or the table lamp or something infinitely more interesting then these stupid little squares of cardboard his mom was shoving in his face and babbling on incessantly about.

Yesterday I decided that instead of just showing him the cards, I'd hold up two together and see if he could eye-point to the correct card. I didn't expect him to really be able to do it consistently, but it beat making up any more stories. I held up the horse and the cat, and asked him, "Connor, where is the cat?" Wouldn't you know he looked right at that cat? Okay, I thought. That was probably just luck. I switched the cat out to the other side, switched the horse out for a goat, and asked him again. And I'll be damned if he didn't look at the cat again. Okaaay... I thought, that was probably still just a fluke. One more time. I'm the eternal optimist. I switched the goat out for a spider and tried again. Connor looked at me as if to say Seriously Mom? and then looked at the cat for a third time and watched in bemusement as his mother sprang up off the floor and started dancing around the living room like a lunatic.

So after further testing, I've determined Connor can now identify the spider, horse, cow, rabbit, butterfly, bee, and kitty correctly five times in a row.

Next on the list, algebraic equations. Okay, Connor, where's the x?

~Jess