How to Take Care of a Five Year Old Autistic Boy
This is an expanded version of the notes I wrote up for Babysitter A, who watched Leelo for 24 hours last weekend so Mali and I could go to my brother's surprise birthday party in AZ. This list does not include any ABA or other therapies, or school work. This is all the Leelo duties that Seymour and I take care of every day. And it's nothing compared to what we used to do for Leelo, and what some of our friends still do for their kids.
In the morning we take him to the potty upon waking (he usually gets up at 6:00 or 6:30 no matter when he went to bed). Most of the time he is dry. He gets lots of praise for being dry! However, even if his pullup is wet, his bladder is usually full because the wetness will be from the night before while he was fighting going to sleep.
He should have his rice milk before breakfast, in a closed/"sippy" cup with one NuThera capsule, one Multidophilous capsule, and 1/4 tsp. of calcium powder in it.
Then he gets his Aderrupp XR (blue/yellow capsules in cupboard above cereals) mixed in with a couple of spoonfuls of yogurt. Then whatever he would like for breakfast. He eats the same stuff all the time, as you know. Rice bread with almond butter ("toast"), whole-wheat croissants, cheerios, bananas. He will eat freshly made pancakes, for egg ingestion purposes, and will of course eat all the french fries you put in front of him.
If you’re willing to risk getting sprayed with a foul fishy substance, he also gets 1/2 tsp of cod liver oil. He takes the oil from a dropper, and it is best to give it to him between bites of food so that he can get rid of the taste in his mouth quickly. Sometimes he takes it readily, other times he spits/sprays it right back out. I recommend dosing him from the side so that you don't have to wash your clothes, too (cod liver oil takes two or three washings minimum before the smell is entirely removed).
In the afternoon he gets another cup of rice milk with a NuThera vitamin capsule emptied into it.
We are trying to get him to try kettle corn every day. This is his current "food tolerance" item to encourage him to broaden his diet beyond his six favored items. He has a history of eating kettle corn with sufficient incentives, such as hunger or persistent encouragement.
Potty is every 90 minutes, and he has been doing a really good job staying dry. He is still schedule trained only--he does not ever notify us when he has to go. He is still wearing pullups during the day, though at school he wears underwear and he's only had one accident so far. We haven’t had any tantrums on the potty in the past week. Still not a lot of luck with poops in the potty--we are trying to be low-key on this topic so he doesn't develop a complex, so if he even looks like he's trying to poop, take him to the bathroom and talk about going poop in the bathroom, but don't force the toilet itself.
At night he has a bath at around 8:00. We let him play for about 10 minutes—he likes to splash and we try to keep his noise level and activity reasonable. No jumping around, etc. Right now he likes to climb up on the side of the bathtub and jump into the water--obviously this is very dangerous and we are not encouraging it.
He needs help brushing his teeth—he can do some of it but not all. However, his tolerance for and cooperation with toothbrushing has improved markedly. He will open his mouth wide when asked now, and will let us brush all of his teeth whereas before he would clamp his mouth shut after the first two brush strokes, and would never willingly expose his teeth. Now he will usually let us floss between his two top and bottom front teeth. Major progress!
Jammies are on the chair. We [still] turn them around backwards so he can’t get them off. They are far too big, but that’s okay.
I read him Goodnight Moon and then Time for Bed (in that order) every night. The books are kept on the floor between Izzy's bedframe and the wall.
Sometimes he just doesn’t want to go to bed. Oftentimes this is because he needs a BM. If he hasn’t had one since noon and it’s past 8:30, he may stay awake for an hour or more, popping out of his room every few minutes, or staying in the room but turning on the light and climbing into Iz's bed or on her bookshelf, or putting his mattress on the floor and taking off all the sheets. Usually you can hear the thump of the mattress before the sheets start coming off--if you're quick, you can prevent his denuding the mattress. If it looks like he's going to be a while going to bed, then Seymour or I usually read a book on the stairs while we're waiting.
Remember that Leelo needs downtime and so do you. When my brain runs dry of ideas I usually consult the OT binder [Occupational Therapy, lots of physical and fun tasks].