Wednesday, December 9, 2009

Glimpses of Sunlight

A has been making some great strides in some areas, and not-so-great strides in other areas. But, Hey! It's progress. A turned 6 about a month ago, and now:

A keeps his pants dry most of the time, now. As in, he's only wet maybe once or twice a week now, and he'll pee in the toilet. He very seldom volunteers to go, though, so we have to prompt him hourly to prevent accidents. He wears normal cotton undies at home, we're trying to get him used to them in the hopes that we'll transition to cotton undies all the time, even out in public. Thankfully, we have wood laminate flooring and vinyl flooring throughout a good portion of the downstairs, and the living room carpet is pretty old already and will be coming out soon (we hope) anyway -- so even when accidents happen, cleaning them up at home is no big deal other than the obvious gross factor. It's just something that we do, like washing dishes or vacuuming.

A still does not have a good control on his rectal sphincter, and commonly streaks in his undies (sometimes with a little extra) throughout the day. Pooping in the toilet is a rare event for us, his muscles just can't seem to do the required pushing all the time. Add in some constipation issues, and it's a recipe for all sorts of bathroom fun. And some occasional fun in other rooms, too. And a lot of laundry. I need to buy stock in the Chlorox corporation, I think I supply a good chunk of their annual profits and want some of it back.

Currently A wears night-time pants (normally used for nocturnal bed wetters) at school and at church, just because he does still have accidents if he's not prompted to go EVERY HOUR. This prompting is not always done by others when we're away from home, so we're trying to save A some embarrassment and prevent teasing or disgust from his classmates. Plus, we don't have enough pairs of pants for him to "go through" each day -- he's only got 5 pairs, total, including jeans and athletic pants. It is much easier on the (overworked) staff to change out underwear designed to hold the mess and keep the outside pants clean, than rinse out cotton undies and multiple pairs of jeans at school. And we can't afford for him to have 4 or 5 different pairs of pants for every day at school.

We still have to give verbal prompts every step of the way: A, go to the bathroom please. Pull your pants down and sit down on the toilet. Wipe your bottom (if needed). Put on your underwear, and then put on your pants. (He likes to strip his bottoms completely to use the toilet). Wash your hands.

We can't give him the entire list of prompts at once; he gets "stuck" on the toilet and waits for a verbal command to wipe his butt, or to put his clothes back on. But he's doing it! The butt wiping is something fairly new that we've been trying, and so far it's had mixed results. A doesn't have good hand dexterity or fine motor skills, so holding toilet paper is difficult for him at the necessary angle to get the job done. He also has a tendency to do some fecal smearing on the walls, his legs, or the toilet seat if he gets any on his hands. It's good that he doesn't want the poop on his hands, but we just haven't been able to convince him to finish up and we'll wash our hands when we finish. (Which we always do anyway).

I usually have to clean up the very last traces that he can't see or reach on his bottom, but he does get most of it cleaned up himself. He also has to clean the "brown artwork", if any, off the walls or toilet seat with a disinfectant wipe. (Again, I generally have to go behind him and finish up). It would be much faster if I did it all for him, but he really needs to learn how to clean up after himself -- and how to do it the right way. Even if it takes a while.

A also still needs help fastening buttons and zippers on his pants. It has not been easy for us to find elastic-waisted jeans for a boy that can wear size 7's in length but is skinny enough for a size 6 -- even slims fall off his butt. I know they're out there, we just haven't found any that work for us yet. So, he wears "normal" zip-fly, button at the waist jeans but has to have assistance getting them on and off. Likewise with the zipper on his winter coat, and tying shoelaces.

A has been doing much better with his writing skills -- he brought home a sheet of paper on Monday that quite legibly said, "I like to read books mommy." I think that one will be kept in a special place, it's the first time we've had anything hand-written that was that clear. He spells things all the time with plastic letters on the fridge, or with the computer, but this is actual writing. With a pencil. His behavior at school is better some days, worse others. A does not like transitions, and he does not like taking turns. Everyone is supposed to do everything in the same order, always, and since A was first at the start of the school year, he still expects to be first to do everything. He's getting educated otherwise, but he's giving the teacher and his aide fits while he's learning it.

I have to be careful with the foods I send for A for his school lunches. Everything needs to be easy to open, and ready to eat. I can't send a whole apple, I have to slice it up and core it or he'll eat the entire thing. I have to cut his sandwich in half to make it easier to pick up, and peel oranges and separate the pieces. If there is a banana, I start the peel at the top so he can grab it and finish. None of those reusable containers work for him, A just can't open them; I use the fold-top plastic sandwich baggies. Not the most environmentally-friendly choice, but it's what needs to happen right now. He does have a reusable thermos for his water, with an easy push-button opening lid.

I still have to cut up his food for him, he can't handle cutting with a knife and fork nor can he just use a fork to cut when necessary. He has gotten a lot better with his spoon usage, he spills very little now. A had a problem with dumping the food halfway to his mouth because he didn't know how to hold the utensils without grasping them completely in his fist, and he'd turn the spoon over trying to get it into his mouth. He still has his textural issues with soups and cereal with milk on it -- he absolutely refuses to eat them. I generally drain as much liquid out of soups as I can before giving him his serving and just give him his cereal dry. He also does not like the flavor of mayonnaise, sour cream or cream cheese (unless it's in a cheesecake) and won't eat certain salads if they look white. This includes tuna, chicken, or fruits. He will eat whipped cream, but usually only if you make him take a bite of it and he figures out that he likes it at that point.

Verbally, we are getting more words out of him than ever before. He saw the leftover snow on Saturday (2 inches) and came up to me late in the afternoon and said, "Red. Boots are red. Put on? Put on green coat. Go outside. Play snow?" Thrilling!!!!!

We don't generally get more than two, maybe three words together at a time. This was a whole paragraph! And yes, we all went outside to play in the snow. A can't make snowballs with his hands, so I have to scoop up some snow and help him form them, hand over hand. He does take great delight in dumping the snow on his sister's head while snickering, so there's something that is refreshingly funny.

We can tell that many of A's brain processes are pretty typical, even if he doesn't talk a lot and has some fine motor skill challenges. He's also got a mischievous streak a mile wide. For example, K fell asleep on the couch yesterday afternoon and A walked over there, looked at her, and began tickling her. She cracked one eye open and screeched, to which A responded with a cocky grin and a chortle. He tickled her again, and K threw out a punch that A dodged easily. Then he whalloped her with a throw pillow. At this point, K is getting more and more upset because all she wants to do is take a nap. A and K got into an all-out fight, complete with feet, pillow whomps, and grappling.

Z and I actually stood back and watched it for a minute before splitting the would-be WWE contenders up, just to revel in the weirdness of what would usually be considered the normalcy for siblings. We stood at the doorway so we could duck out of sight and crack up when we needed to. And of course we stepped in when it became apparent that the kicks and pillows were becoming a tad more forceful and the expressions on both kids' faces started becoming more...determined. I didn't want a UFC experience in my living room, so they were quickly sent to opposite ends of the room to cool off.

Another new development is A's radio. Z's parents got a small CD player/radio for A's birthday, and he loves it. I've taught him how to turn it on, and how to push "play". We haven't quite gotten how to change out CDs yet, but that will come. He listens to his radio all the time. This is great! I'm hoping to get him used to headphones, so we can take a walkman or something with us when we're out around a lot of people. (Shoot, do they even MAKE walkmans any more? We'll get whatever the current thingamabob is. I-Pod?) If we've got music, maybe he won't freak out so much at events like, well, going to the mall.

I know a lady with a 12-yr-old son on the spectrum, and this really works well with her son. She's happy because she can go shopping or take the family to the park for Independence Day, and he doesn't freak out as long as they have his music going. They do take a lot of extra batteries, just in case. We're going to give it a try with A, I just have to figure out how to get him used to headphones. And I also have to find some that are durable enough to withstand A ripping them off initially. Forget the earbuds, we just need the old-fashioned on-ear kind.

I don't know if this would work on an airplane? I know you have to turn off certain electronics for take-off and landing, but don't know if an I-pod would be on that list. I haven't flown in years, so some research is in order. Z and I have been discussing vacation times and seeing family, which are spread from CA to TX to GA. We'd have more visiting time and less travel time if we flew rather than drove, but I really don't know how A would react to the noise and being in close confines with a lot of people. That's at least a year out at this point so we've got plenty of time to figure it all out.

Bottom line is, we're making progress every day. The storms are still there, but we're seeing those gorgeous rays of sun break though at the most unexpected times, and we're enjoying getting to know our son every day.

1 comment:

ZDENNY said...
This comment has been removed by a blog administrator.