Today my son Thomas and Brandon are having "at-home" days. These days are because they are experiencing extreme difficulty with symptoms of their autism. Mostly, it's the pressure to "perform" for their peers and authority figures at school to be more "normal" than they are. It takes a lot of effort on each child to maintain a controlled presence in the face of all they experience.

Occasionally, I will pick up on signs that it's getting to be too much. They've been back in school a month now and usually these at-home days don't pop up until the third month. For whatever reason though, there were definite signs that it was getting to be all too much.

For my oldest, who recently turned 12, getting him TO school is a chore nearly every day. Yet, during the summer he whines until he can go back. It's the getting up, showered, dressed, to the bus stop, the bus ride, and "arriving" at school that is the actual problem. Once he's there, he's usually good to go. For someone like him who has extreme difficulties with executive functioning tasks (getting organized and getting to places on time, etc), this morning routine can be draining.

For my youngest, who is 8 years old, the problem is at school, once he gets there. He travels on a special bus at special times so to avoid the "crowd." When he's at school, he's in a large class. This year, he has two teachers. He spends a half day with his classmates with one teacher; then, after lunch the whole class switches to spend the remainder of the day with the second teacher. This is the first time he's done this as a student and it's quite disconcerting for him. Even though the whole class switches with him, it's the whole class that switches with him.

We have plans that in a month or so, depending on how well he does with this, to switch him. The second half of his day will be spent in the resource room with his one-on-one aide and a small group of children on a developmental level similar to his. This will probably help towards ending the need for "at-home" days as it's less stressful for Bboy.

For different reasons, both boys at times need a day off that doesn't fall on the weekend or an otherwise scheduled day off from school. I do my best to limit these at home days because if they are to attend school at a brick-and-mortar location, it is in their best interest to attend on all scheduled days. As I said though, there are signs that they are cracking.

For Thom, it comes in the form of surliness beyond cranky. He will begin to absolutely refuse to do anything that does not involve his favorite subject of the moment (Yugi-oh! again). This includes showering, changing clothes, watching TV, reading, going on to the bus, getting in the car, and sometimes even going the bathroom. Some may say "Well, make him!" I cannot physically force this child to do anything. He is 5'5" and about 180 pounds. He's taller than me. I cannot MAKE him to anything he doesn't choose to do.

For Brandon, he is usually happy-go-lucky and will do any chore requested of him, no matter what it is. He's happy and giggly and loves making jokes. For him to turn around and start becoming surly is a HUGE sign that something is not right in his world. He begins to cry when the bus shows up, telling me he'll get "hurt" at school but can't tell me what gets injured, other than his mind. That, to me, is a huge sign he's on overload.

Yes, Thom is often surly by nature. That's just a part of who he is a lot of the time. But this absolutely refusal is different than his arguing to do something. He'll do it, you'll just hear about it, is the usual course of events for him. To absolutely REFUSE, even under the threat of punishment, tells me that overload is occurring.

Those signs pop up and I look for the source. It is not always school that causes overload. There are times where going to church, bible study, friends' houses, etc. that cause similar overload. I limit the activity that is causing the overload. In this case, today, school has overloaded both of them. Usually it is just one or the other. This is the first time it's been both.

However, just because they need a day off from the pressure of a large group doesn't mean they need a day off from school or learning. Bboy always has work that needs completing in his school bag and that is what he works on when he's home (reading, math, writing exercises).

Thomas usually finishes all his work in class and so doesn't bring home work. However, the school offers a website where kids can log on and do work via a program. That is what T works on for his "at-home" days.  He can work on math skills, reading skills, writing skills, and computer skills (such as typing).  He also has an essay he needs to work on.

Well, a storm has arrived and so I will post this. I'm just sharing this because there may be parents out there who may be interested to see how one family handles things.

This may not work for every family. Plus, laws governing absences may differ. My children have this “at-home” option written into their IEPs (Individualized Education Plans).  

I have two sons. Both are on the spectrum, at different points. Both are extremely different in personalities too, so it shouldn't be surprising to me about how different they are with their cleaning.

T, my oldest (he'll be TWELVE on August 26) is also the messiest. He reminds me of Pig Pen from the old Charlie Brown comic strip, Peanuts. I don't have to wonder where he gets it from: he gets it from me.

My father used to call me that when I was little. Little dust clouds just seemed to find me. I remember one time when my sister was in charge of getting me dressed and bathed in the mornings for school. My parents had divorced by this time and my mom worked a lot. So, my sister took over the morning routine to let my mom sleep in after working a late shift. Well, she would do her job just fine, but it never failed that by time I got to school, I was absolutely filthy. I went from our house, ten steps away, waited maybe four or five minutes, got on a bus, rode for an hour, and arrived at the school looking like I hadn't bathed in months. The school called protective services. I pointed out to CPS that it was NEW dirt. LOL

But T... man, his room! I was messy as a teenager. I was a hoarder. But I didn't save TRASH. I wasn't one of those types of hoarders (although if the disease had progressed, I'm sure I would have at some point). T? He saves trash, dirty clothes, toys, dirty plates (I swear he takes them from the sink and puts them under his bed!)...and he hates cleaning it all up.

B? He'll clean up after himself. He has since he was a kid. But after living with T for so long and his parents who are mostly unable, well... he's been slacking too. But naturally, he's the cleanest person in the house. I went the other way after I received treatment for hoarding. It's all the same: OCD. Either you're obsessively clean, or obsessively messy. I didn't realize it was the same thing until years later and went back for more therapy after I also developed compulsions. I'd say B tends to lean towards that side of things.

Now, when it comes to clean up time (1/2 before bedtime starts, it's a kickoff to the bedtime routine), the two react very much alike. Neither one wants to do a thing. They want to finish watching their TV show, or now all of a sudden they remember this or that thing they HAVE to do right then.. etc. This is why it starts 1/2 hour before "bedtime." It really only takes five minutes, max with full cooperation. But it takes 25 minutes of excuses, stalling and whining to get to the full cooperation.

A twitter friend (@CorinaBecker)  had recommended a way to get Thomas to be more independent in cleaning his room (right now, I would have to stand in there and point out the things that need cleaning, in a systematic order). She said to draw a visual map of the room, and make "quarters" and have him clean up a quarter at a time. Or whatever works for him but using the map of his room as a visual aid.

So, I had T make the map. He's way better at drawing than I am! He took it seriously, too. He used graph paper so he could draw it to scale and everything. I then took pictures of each quarter of the room so that they fit into his drawing. This was so he could see what it's SUPPOSED to look like when he's "done" cleaning. If he comes out and says, "Done!" I call back to him, "Check your picture!".. and then a few minutes later he'll come back out and say "Done!" and I'll say "Check the next picture!" and he'll go back, and so on until all four quarters are clean.

This may not seem like progress to anyone else, but to me it is. This is a time where my behavior-based time out technique wasn't going to work because I didn't want to PUNISH him. I wanted to TEACH him. We (caregivers, teachers, professionals, anyone who knows anyone with autism) know how difficult it can be going from a state of dependence to independence for our kids. So, I wanted Thomas, who can cook a mean meatloaf all by himself, to be able to clean up his bedroom all by himself. It's a part of life skills that he'll need if he's ever to live on his own with a quality of life that I wish for him.

He's made progress. Yeah,sure, I have to remind him to use the system but the system is there. And yeah, he'll learn to rely on a system instead of just "knowing" but it's a step towards self-directed skills. Right? Right!

So, I made Brandon a map too. He's used it perfectly and absolutely adores it. He says, "Don't change a thing! No more rearranging my room!" **smiles** When we had housemates, we had to rearrange his room and he did not like that at all. But he's used to it now and so doesn't want to change it again. I won't change it again, unless he wants to, of course. I did tell him we COULD rearrange and just take new pictures but if looks could kill, the look he gave me would have knocked me out lightening fast!

So, if your kids have ability to clean but have some executive functioning issues on WHAT to do to make it clean, this idea might help you, too :) (okay, no one mention that I begun using one for the rest of the house too hehe)

I'm not sure if there is a correlation between autism and being easily sunburnt. I do know that for me and my youngest, we definitely have trouble maintaining body temperature and often get sunburned easily. My oldest takes after his father and very rarely burns. Or at least, that had been the case.

This summer the boys have burned more easily than ever before. I started buying Coppertone for Kids SPF 50 continuous spray sunblock. You get two bottles (6 oz each) for $12.50. Quite expensive, but SO worth it! That stuff rocks! We get tans with that stuff on but we never, ever burn. I even use it for myself although it's labeled "for kids." I need the higher SPF than most adults seem to.

Well, yesterday my housemates watched my children while my husband and I slept in. That was VERY kind of them! They decided to go away for the weekend to a family member's house and so woke me up because my kids were going to stay in the pool. I didn't think anything of it. I let them swim for another hour or two and then called them in. They were pink all over and I thought "Ut oh!"

Sure enough, no one had put sunblock on them. My oldest said he thought we were out; otherwise, he would have done it for himself and brother. I wonder if my roommate thought the same thing. Or maybe she didn't think about it all because her kids rarely burn. They are out in the sun a lot and I think the kids' skins have adjusted to the rays of the sun, whereas my kids stay indoor much more than hers does. So, maybe that's the difference. I'm not sure.

But I do know that my youngest now has a second-degree sunburn. Learn from us. Use sunblock EVERY TIME. If someone is babysitting, make sure they know where it is and to use it. Even if your children do not burn easily, it's best for them to have it on anyway to protect against other types of sun damage and skin cancer later in life. Develop those good habits now, and they will keep them up later.