Today, the firm that I work for has offered us a chance to spend 4 hours doing community service during work hours. I totally jumped at the chance. We are going to be painting apartments for low-income seniors. Based on the number of volunteers we had we’re set to paint EIGHT apartments in 4 hours. Yikes! It should be fun despite how fast we’re going to have to move, lol.
Life with Fragile X Syndrome
He did it!
He wore underwear allll night and stayed dry allll night. I am so proud of him!
He was adament last night that he did not want the diaper. “No, No, No! Back! Away!” lol So we took the plunge two days early.
Then, after he was up and moving around, he pooped in his boxers. Ah, well…we’ll get there too. We had been feeling a bit frustrated about this because the toileting specialist has told us repeatedly that the bowel movements are the easy part. Just sit them on the potty for 5-10 minutes after a meal and presto chango! Poop in the potty!
The problem, of course, is that Monkey is not going anywhere near meals. He’s going before breakfast, he’s going two hours after lunch, he’s going pretty much…whenever. So.
I mentioned our potty success this AM to his teacher and the subsequent issue and she reassured us that it’s totally normal ((One of the classroom assistants, who has been doing this for 30+ years actually laughed when we told them what the potty specialist has said)). She said that the bowel movements are the hardest part for the kids to master, in her experience. In 8 years of teaching special needs classes she has surely potty trained more children than we have, lol, so we’re going with that. He’ll get there when he’s emotionally ready for it. We know he can sense it and there are no more consistency issues…he just needs to mature a bit.
I think we’ll return that box of diapers and let Monkey spend the money…maybe we can convince him to let us buy him some more underwear too, lol.
Shhhh, don’t tell but…
Monkey went to bed wearing a pair of underwear. Did NOT want diaper. *fingers crossed*
Countdown to Dryness 2009 – Night 5
Another one down…we have less than 10 diapers left of our last monster box. We have another monster box sitting unopened. I’m starting to wonder…Keep it? How long? Donate it? Return it? Decisions, decisions…
Improvement in the Monkey/Great Grampy relationship
I’ve mentioned before that Duhdee’s grandfather lives in the other half of the two-family house we live in. We’ve lived here for all of Monkey’s life but, for some reason, Monkey is a bit scared of his Great Grampy. They both want to interact with each other but Monkey is just very uncertain about Great Grampy.
We’ve had some nice interactions, mostly in our house where Monkey feels safest. Monkey has been adament about not going into Great Grampy’s house though and he tries to avoid direct interaction whenever he can. Something is changing though and Duhdee and I are trying our best to encourage it.
For example, since our plumbing disaster ruined Great Grampy’s bathroom ceiling Duhdee has been spending a lot of time down there doing repairs. Monkey has been missing his Duhdee and he’s very drawn to tools so he has twice now ventured, willingly, into Great Grampy’s house to visit with Duhdee and watch him work. He waves to Great Grampy from a distance and, yesterday, nearly wandered into the living room to join Great Grampy watching TV but he thought better of it.
Another really nice interaction, also yesterday, happened in the basement. Duhdee was building a new shelving unit for me for starting seeds. Great Grampy came down to see what we were up to and Monkey waved to him and said “Hi.” Then he started showing off for him! He ran around the basement and performed feats of strength. He tried to push the house off the foundation, he tried to move the dryer, he tried to rip down the cast iron waste pipe…and all the while he was making eye contact with Great Grampy and smiling. He was also grunting to show how much effort he was putting into his feats of strength.
We’re really encouraged by all of this and I know it’s making Great Grampy very happy as well.
Countdown to Dryness 2009* – Night 4
Last night Monkey put himself to bed a half hour early. That, coupled with the fact that he woke up around 10:30 requesting a glass of water, drank it and then asked for more, did not bode well for his efforts to stay dry for 7 consecutive nights but HE DID IT! He woke me up at 6:45 (which is also 45 minutes late for him) and we went straight to the potty ((Ok, OK, I rolled around and whined about how early it was for about 5 seconds before we went to the potty…I am never going to be a morning person.)). I am very impressed.
The other, massively important, aspect of potty training is at a dead standstill. He’s gone twice in his pants each day this weekend. The potty training specialist keeps saying we need to get him to sit for 5-10 minutes after each meal. The only time this kid sits still for that long is when he’s eating. We are not eating in the bathroom! We’ve tried the sticker charts, we’ve tried really fun toys, we’ve tried books, we’ve begged, we’ve bribed…nothing will entice him to sit there.
I really just don’t know what to do. He knows when he has to go, it bothers him enough that he tells us as soon as he’s done so we can clean it up, but he still just keeps going in his pants.
*Thanks Holly’s Mom for the snazzy name.
I hope he never loses his love of the vacuum!
This morning Monkey began asking to vacuum the floor before my eyes were even opened. I’m sure a lot of people would find this annoying but since we have two, double-coated, dogs…well, it’s always good to have someone who enjoys vacuuming around! I did make him wait until after we’d had breakfast but as soon as we’d cleaned up I suggested he go get the vacuum out.
You would have thought I’d just invited him to Disney World by the way his face lit up. Of course, he didn’t want to actually USE my vacuum, he just wanted to watch me use it but he did help out a bit with his Dirt Devil.
I have high hopes that, some day, he’ll beg to use the vacuum and then proceed to vacuum the entire house. Maybe even daily. A girl can dream, can’t she?
BTW, day 3…he woke up dry. I don’t mean to bore anyone but I will lose track if I don’t write it down and I did promise him that after 7 dry nights he could wear underwear to bed too.
He is *so* determined.
Another dry morning…that’s 2 in a row and 3 of the last 4. I told him last night if he goes 7 nights in a row he can stop wearing diapers to bed. *fingers crossed!*
Folic Acid
We started Monkey on folic acid therapy in August of last year. I can’t believe I didn’t mention this at the time, lol. Anyway, the literature all says that it takes a minimum of 4 months for the effects to show up, if any, and we’re well past that mark. In fact, the 4 month mark was in early December.
I would really encourage other families to consider this. We’ve had no side effects at all and we just so happen to have witnessed a marked increase in Monkey’s ability to attend and communicate starting right around the 4 month mark. Part of this could be explained by the increased sensory OT he’s receiving at school but he maintains on weekends and during school vacations when he’s not getting any OT so I don’t think the extra OT can account for all of the improvements.