November 2013

he doesn’t get as many as he should, but loves them.

I played play-dough with Jack this morning, we had fun and we spelled our names, too. I was getting ready to go and after he messed around at the table a little longer than I wanted I finally told him to put the play-dough in the tub. After a few minutes I saw him walk to our bathroom with both hands full of play-dough. He was going to the bathtub! Silly kid :-)

We’ve had a good Thanksgiving today, it was pretty much like last year. We left the house this morning at 10:20 to go deliver meals. We finished a little over an hour later and came home and ate whatever for lunch. My Thanksgiving meal plan looked pretty easy so Jack and I took a nap, then I got up to make dinner. Tj started smoking the turkey this morning at 9 and I was going to make everything else myself but he helped :-) We finished dinner around 6pm or so (right around the time I remembered the cranberry sauce in the fridge, heh), and then Tj suggested a game. Wii Yahtzee didn’t work out so well so we started it over in the kitchen with real dice. Tj beat us all, then Jack! I came in third and Max was last, with a good attitude nevertheless. All in all a good day.

A few days ago Max asked me, “I’m not really thinking of it but if I did run away would you let me bring my ipod?” Silly kid!

I had J’s IEP meeting the other day, and it was par for the course. They started off on my bad side asking to lower his PT from 2 45-minute sessions a week to 2 30’s. I think because I’ve always had to fight to get him more therapy my hackles immediately go up when they talk about reducing therapy. In all honesty the PT is the thing I’m least worried about, and we have discussed completely pulling him out of therapy if it got too hectic (like if I had to take him to/from school a couple of times per day for therapy while we homeschool him). But if he’s right there in school and he needs therapy, why reduce it? And he does need it. Again, I think it’s the least one he needs because what PT does is make him more deliberate in his gross-motor movements like going up the stairs or running, etc. He still doesn’t alternate feet on the stairs, and needs to hold onto the handrail for up and down. I know in time he’ll be there, but it is a sign that he’s way behind most other 6-year-olds. So since he is way behind why not keep pushing with as much time as possible? They said that he needed group time where he could see lots of other kids and then desire/try to emulate them. He is definitely doing more of that, I see him often watching Max and copying him…it’s so sweet. But when I break down the numbers (which I didn’t have the presence of mind to do completely while there) he’s at school 35 hours per week (not counting bus time, but counting all time including recess and lunch, etc.). Only 4.5 hours of that time is he pulled out for therapy. Why decrease that at all? That means he’s getting 30.5 hours of group time. Another reason they said he shouldn’t get as much as he’s been getting is that he doesn’t work at PT the entire time he’s there, he’s distracted and bored (and basically a little kid), he doesn’t ‘attend to task’ the whole time. I think then that the ratio of PT to distracted time would likely stay the same if we decreased it, so he’s losing PT time.

Before we decided what to do there ST said she wasn’t sure if she should increase her time or keep it the same. I immediately jumped on increase!! Of all therapies I’m most concerned about speech. I know that right now he gets around fine (if slower than kids his own age), so PT’s coming along; and I believe one day he’ll be able to button his own shirts and brush his own teeth, so OT’s being taken care of. But I feel least sure about speech. Of all things I think his life will be harder if he can’t communicate well with people outside of his family. I’ve probably posted this before but what if he gets lost and can’t tell a policeman where he lives? Or if he can never go into a restaurant and order his own food? Or if he’s so hard to understand will he ever have just a regular conversation with anyone other than his family? He needs to be able to be understood by other people. Of all things speech should be upped. They (the therapists and his teachers) were all harping again on the group-time and not wanting to increase speech. After a few minutes of discussion I asked the ST if this was your kid what would you do? Without even thinking about it she said she’d increase his time. There. Was that so hard? Why can’t they just think of Jack as a child instead of seeing him as a timesheet or funds being brought into the school because of his disability? I feel so frustrated. In the end we upped his ST and decreased his PT so overall his therapy time stays the same.

Tj says it’s not a 1:1 ratio; x amount of therapy doesn’t equal x increase in his skills. I know that. And no therapy doesn’t mean no progress. I agree. But therapy that’s there for the asking (or begging)…shouldn’t we beg and get it? I’m the only one who thinks so. Maybe I just like beating my head against the wall.

In other news there’s no doubt that Jack has made incredible progress with potty training. He’s been in school 14 weeks (with a week off for vacation, and several half-days due to appointments and other vacations) and he’s had several days at school where he’s only pottied in the toilet, never in his diaper/pull-up! Yesterday was the first day at home that he did nothing in his diaper, and we even were out of the house for part of that time! I took him with me for an hour while I gave blood, then we went to the playground at BK. Before we pulled into the parking lot I told him we were going to the pg/slide but before we could play he had to sit on the toilet. He kept saying ‘bye bye toilet’ but I told him that’s what we were doing. He fussed when we got there, but it was somewhat mild. I calmly kept repeating that he had to sit first. He peed and then we went to play. We stayed there about 3 hours and he refilled his cup once or twice and also had an ice cream cone. We went to the store on the way home and were there for about half an hour. When we got home I put him on the toilet and he went, and his diaper was dry! What a miracle! He was doing great today even with us going out for deliveries, but he soaked his diaper while we were playing Yahtzee. Oh well, we’re getting there!

This morning Jack was asleep when I went in there, but awoke in a good mood (as he usually does). We came downstairs and I was getting him ready for the bus and he fussed at me. When I told him to use his words he said ‘Potty toilet’. I had him sit by himself and he pottied!!! I’m super excited! He still has accidents, but he’s certainly not where he was when he started school! That’s the first time he’s really wanted to sit on the toilet and actually had to go!

A while back Max said he wanted to cook a meal for the whole family. I was excited, and said we’d do that in December (which I hope is just going to be fantastic!). Friday I asked him what meal he should cook, and things went downhill from there. He said he must be the family slave! I told him he does a lot for the family but if anyone was the family slave it was me, and then I listed several things I do for all of us. Now, he does do a lot, but family slave? Really? I was seething. I managed to keep my cool, though, and just told him to finish his breakfast. By the time we’d started school I’d figured out what I would do. I had him do all his school except English. Then I told him for the first part of his English lesson he’d have to write an essay on how he was the family slave, and that it had to be 1/2 a page long. This is what he wrote:

Max’s Essay
Prologe: I’m sorry that I griped this morning about me being the “family slave”.
I did it because that I do a lot of stuff. I vaccum, clean off EVERYBODY’S dishes after supper, and a lot of other stuff without pay. Aaaand, I never remember me wanting to serve the WHOLE FAMILY a meal. In return, here’s a little poem: “Mom’s a little bossy, daddy’s on a diet Jack has down-syndrome, but, you just have to get used to disapointment.”

I died laughing!! And then he started crying that I was laughing! He said it was a serious poem and yelled that he’d better just go up to his room for a while. I told him to be sure to close his door, and then I called Mom so she could laugh as hard as I had.

When he calmed down I told him the second part of his English was that he’d have to write a essay about how I am the family slave, and that it had to be at least as long as his essay.

You clean the toilet, help daddy, put the dishes in the dishwasher, fold the clothes, and make my lunch and supper. You also go get groceries, help me A LOT, and I can’t remember anything else. oh! waaaiiit a moment! forget I said* that. You also care for me and Jack.
*in this case, wrote

Yeah, that’s all I got! It was a good 5-6 lines shorter than his. So I assigned him another essay on how Daddy’s the family slave.

Daddy helps buy almost all of our electronics (XBMC, Minecraft, house appliances, e.t.c.), cares for Jack and me a lot too, cleans out the hot tub, fixes electronics, takes care of the family, serves the church, gives us gifts, lets us go out to eat, make pancake and waffles, told me that I could save up for minecraft, trys to be a fun dad, got the bus, bouht our house, lets me shoot my shot-gun, help mama, gos to work on time and doesn’t gripe, went to Columbia and Kuwait, and bouht the hottub.

We sure are getting a lot of mileage out of calling out for the family slave to do things around here these days :-)

Now in Jack’s blessings over the food, right in the middle, he’s been remembering to say ‘Thank you, Jesus’. He also usually throws in ‘Animusic, please Mom’ which never fails to give me an inward chuckle.

He was completely dry last Friday at school and yesterday. I put the potty alarm on him last night and he didn’t have any accidents then, either!!! Tonight the potty alarm worked its magic again. Although, yesterday I made him sit on the toilet right when he got home from school, then he mentioned ‘potty’ an hour later so I made him sit, and then I made him sit before bedtime; he pottied all 3 times. Tonight I made him sit a few times and he’s hardly peed at all, and none right before bed. Wonder if he’s saving up something special for me for tomorrow morning?

Speaking of saving up…
We had a really busy week: eye appt Monday for Jack, ortho consult for Max Tuesday, dentist for Max and me Wednesday, Fun Friday and haircut Thursday, and today we had Jack’s boxcar race at school. Ugh! It’s hard keeping up with homeschool when we’re gone so much; not to mention how much housework has backslidden this week. Anyway, I was trying to get Max to finish up his school and chores on Tuesday, he’d been being as slow as usual. He’d told me probably twice that his stomach hurt, but you know, that was always during the sit-down schoolwork like math or grammar, never during recess or at the ortho’s where he got to play computer games in the waiting room. Anyway, it was pretty much his bedtime and he only had 1 last chore. He started complaining about his stomach again and I told him to just finish up and then he’d be done for the day. He leaned over just then and threw up!! I was floored! (As was Tj, who’d also just gotten done fussing at him for playing around.) Ahhh, parenthood. He had no fever, and that was the only incident. I hope he makes it to adulthood!