Educating parents about behavioral sleep strategies may improve sleep habits in their children with autism.
This study looked at whether a parent education program about sleep habits might help parents to create better habits at home. Parents of 20 children with autism (3 to 10 years old) participated in the study. Parents attended three 2-hour workshops led by 2 physicians. Parents learned about setting good daytime, bedtime, and nighttime routines. They also learned strategies for dealing with their children if they wake up in the middle of the night. One month after the last seminar, parents reported improvements in 6 out of 10 measures of their child’s sleep habits. Sleep habits improved even for children with low receptive language abilities. The authors said that a few sessions of parent education may be very helpful to parents whose children have sleep problems.
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Responding to Tenex - Intuniv (guanfacine)
Sep 30, 2011 by AnonymousWe've used Tenex since my son was almost 4 in combination with Abilify (which we recently stopped). He is 8 now and weighs 125 lbs and is almost 5ft tall.. It has been amazing in helping him with the hyperactivity without sedating him or him a zombie. We tried the extended release version (Intuniv) but my son processes things very quickly and it didnt work well for us. We have found that giving him 1mg 2x per day and 2mg at bedtime with Melatonin (5mg) have increased his sleep. One thing to note about Melatonin is that it can cause night terrors so if thats happening you may need to switch to something else. Im not sure that using benadryl long term is good for our kids but you do what works and the dr is ok with. We also keep on hand ativan (he tends to have issues with anxiety ie drs appts, grocery shopping etc.) and clonazepam for long trips and severe aggression. The ativan and clonazepam are used sparingly. My son knows what his meds are, what they are for and can tell us if he needs something (he is rx'ed the tenex for am, lunch and bed but if he doesnt need it then he doesnt take the noon dose). Its been a long road to get him from non-verbal to verbal (still some delays but he can hold a conversation) and is now actaully quite social. His medications help allow him to be who he really is and dont just mask the problems that he has.
Starry, starry night...
Apr 21, 2009 by AnonymousI can’t believe it, and I know I say this every year, but I can’t believe that the school year is almost over. Only a month and a half until summer vacation! And I’m not dreading it for many reasons this year. For one thing, the kids are okay if left up to their own devices for a little while in the morning if I want to laze around in bed for a bit. When they start whining about trivial things like being hungry and wanting to eat, I get my carcass out of bed. But still, there’s usually a good extra half hour that I can doze. So there’s that. Really, the underlying fact that makes everything easier is that the kids are simply growing up a bit. And Thomas continues to improve little by little.
It seems like – and I hate to say this “out loud” – but I think we’ve licked the whole problem with the kids staying in their beds all night. About twenty “sleeps” ago, I told the kids that if they both stayed in their beds for ten nights straight, we’d go to Chuck E. Cheese’s. They did it, so I took them and said that if they did it again for another ten nights, we’d go again. So far, so good and we’re supposed to go on Thursday. In my attempt to be more frugal, however, I think we’ll not eat there but just play games. I buy about ten dollars in tokens and the kids know that when the tokens are gone, it’s time to go. I don’t mention to them that I usually spend a few tokens playing Skee-Ball, but at their tender age, they don’t count out the tokens. So through Chuck E. Cheese’s bribery, I’ve been able to get better quality sleep lately which always helps.
Speaking of the bedtime routine, it looks like Thomas is back to where he was several years ago when he would go to bed awake, turn out the lights and fall asleep on his own, staying in his bed all night. Thomas was almost three when he started regressing, sort of. Up until then, he was doing great with bedtime when all of a sudden, he wanted us to leave the lights on. Then he wanted one of us in his bed with him while he fell asleep. Before the Clonidine, this could take more than an hour, too. It would take him forever to fall asleep. Anyway, this has gone on for the last three years but now he’s going to sleep with the lights off and he only occasionally asks for Jonathan or me to lay down with him. Hayley still insists on the lights being on but I suspect this is so she can maintain her “bug vigilance.” She can spot a teeny-tiny itsy-bitsy bug in the corner of her ceiling from ten feet away and will get so scared that she cries until someone comes to get rid of the insect. Oddly, she freaked out about a little fruit fly the other night, but there was a huge black spider on her wall tonight that she calmly pointed out to me. The thing left a mess on the wall, too. I think that flying bugs freak her out more than crawling ones. All of the bugs that have been hibernating in the house all winter are waking up and trying to get out.
We’ve been told by the weather people that it will be in the mid-eighties here on Friday and it seems almost too good to be true. We’re going to walk to school again, and we’ve been ditching the wagon lately because I figure this is good “training” for the kids to walk to and from school in preparation for Disney World. It’s also good for me to train myself walking with a kid riding piggy-back which I figure will happen many times in Florida. I should put forty pounds of sand in my back pack and walk on the treadmill like that. Does it seem strange that as a family, we have to physically train for a vacation? It’s a vacation…and supposed to be relaxing. I guess if we wanted relaxing, we’d go somewhere else. Jonathan is so very excited about this trip that whenever I’m not working on the weekends, we’re talking about Disney, mulling over our ideas and kicking around touring plans. He’s like a little kid. I’m trying to keep things in perspective and Jonathan’s jumping up and down, declaring that we’re ALL going to ride ALL the rides and try ALL the shows and do EVERYTHING and we’re going to have a MARVELOUS time. I’m sure we will, but I’m trying to keep an open mind. This will be the biggest trip we’ve ever taken with the kids and especially regarding Thomas, who knows what will happen? See, I’m worried about reverse psychology here. Thomas usually hates the idea of anything new. However, when he actually experiences it, it’s all good and he has a great time. You can see where I’m going with this, right? So he’s excited and eager about Disney World right now…will he hit a wall when we get there, hating everything and wanting to spend all of his time at the pool? Oh, most assuredly not, if you listen to Jonathan. He’s so optimistic about Thomas’ projected behavior at Disney World but so pessimistic about Thomas most of the rest of the time! More Mickey Magic.
Work is still okay. This job waiting tables is just what I need it to be. I go in, I do my work, I make a little money and I go home. It’s fun working with the “kids” who work there, listening to their trivial nonsense and the stupid crap that they’re worried about. That’s amusing. But my kids (and Jonathan) have adjusted well to my evenings at work. In fact, Jonathan did Hayley’s hair beautifully tonight after her bath. He’ll be a pro in no time.
Sleepy, Dopey and the Doc
Sep 19, 2008 by AnonymousThe saga continues with the medications. I’m sure that the neurologist (with whom I have not spoken in person or over the phone) is tired of me calling the office to give “updates” on Thomas. Since last Friday, the doctor asked us to give Thomas one-half of the Clonidine tablet in the morning and keep him on two at bedtime. Last weekend was the first time we tried it and Thomas was very sleepy in the morning as a result. Not hyper-active either, but rather dopey. Sunday night I sent an e-mail to Thomas’ teacher explaining that if Thomas seemed sluggish in class on Monday, it was not because we replaced the milk in his Lucky Charms with Miller Light. He really does seem kind of drunk when he takes the Clonidine and at night, this is okay. Anyway, Monday morning I chatted with the teacher and she said that Thomas was good, just “different.” Last Thursday and Friday when he took nothing in the way of medications before school, the teacher reported that things were “pretty rough” for Thomas. It’s really too bad about the Focalin. It worked for Thomas except for the facial tic.
We’re going to stick with the half Clonidine in the morning, because after speaking with the neurologist’s office on Wednesday night, she said that the sleepiness should wear off after about a week but the calmness and focus should remain. I’ve actually already noticed that he seems not so sleepy after taking it in the morning. There are other options, apparently, but we know how well Thomas tolerates Clonidine so we’re going to stay with what we’re sure of.
My Internet job search continues. I’m looking for part-time word processing stuff I can do at home in the afternoons. Most places are looking for “cyber assistants,” but that would require answering phone calls. Phone calls are no good because the kids know that when Mommy is on the phone, it’s open season or “Thunderdome” as Jonathan would call it. There are so many scams out there, too! The one thing I qualified for in terms of typing speed and accuracy is only hiring people who have legal document experience. I’m really hoping that if something comes along, the kids will cooperate and let me earn some dough.
Hayley is doing well in preschool and seems to like it. She’s made some friends and her teachers are nice. It’s like pulling teeth to find out what the kids did in school on any given day. Hayley’s got her head in the clouds and is content to sing songs from “The Wizard of Oz” on the way home from school, and if I pepper Thomas with too many questions, he shuts down, saying, “I don’t want to talk about it anymore!” True to his nature, however, he is only too glad to report who wasn’t behaving in class and who got a “yellow.” The teacher uses a green-yellow-red system to report to parents on how their kids did that day. I’ve observed this in class and she actually lets the kids push her pretty far before they have to change their card to yellow. If they clean up their act, she lets them change back to green. There are a couple of kids who are consistently “in yellow” as the day closes. I picked them out right away on the two Tuesdays I’ve been there to help out, even before the teacher had had enough of their tom-foolery.
Thomas has been in green every day, but I think that the teacher is a little more lenient with Thomas’ behavior. I’ve never seen him act up on Tuesdays, but she seems a little gentler with him when she has to remind him about what he’s supposed to be doing. Yeah, it’s probably because I’m in class and she doesn’t want to holler at him while I’m there, but I think she’s probably just a little more understanding because of his problems. I know that if the teacher ever told him to change his card to yellow, he would be extremely upset. He knows how important it is to behave, which is nice.
The kids in kindergarten have earned enough marbles for good behavior to have a party! Next Friday is Pajama Party Day! I was invited to come, but Hayley will have preschool that day so I can’t make it. I told the teacher that I would wear my pajamas all day anyway, in honor of the occasion.
Compare and contrast
Mar 27, 2008 by AnonymousThomas has been enjoying a very busy week off school. The Easter Bunny came with lots of candy, as promised. The kids had chocolate eggs and jelly beans for breakfast on Sunday and it was very apparent. Sugar really seems to affect Thomas a lot more than it affects Hayley. We went to Jonathan’s aunt & uncle’s house for dinner that afternoon and the kids had a lot of fun there too. When did Easter turn into a “gift holiday?” There was quite a haul to bring home that night, but the kids weren’t part of it. They went to my mother-in-law’s house for the night. That was fine with us. Everyone spent the day filling the kids with candy; we thought it fitting that one of the feeders deal with the fallout. Grandmas never mind that kind of thing, though.
I was supposed to bring the kids home on Monday, but only Hayley wanted to come home! Thomas wanted another night with Grandma and we didn’t have any plans for Tuesday so I said that it was fine for him to stay. Tuesday came along with another phone call saying that Thomas wanted just one more night at Grandma’s house. I know that Jonathan’s mom loves the company and I really had no good reason not to let Thomas stay, so I spoke to him briefly on the phone about it before consenting. I went to pick him up Wednesday morning and we went straight to my parent’s house to visit with my mom. We went out to eat and to the park since it was such a nice day. Yesterday evening, however, the affects of Thomas’ sojourn with Grandma were beginning to show. There was a certain amount of disregard for authority. There was also a distressing attitude about bedtime schedules. Hmpf. So we’ve decided that two nights at Grandma’s house is the absolute limit in a non-emergency situation. More than that and Thomas begins to get used to the leniency. Not that there’s anything wrong with it! That’s what grandparents are for! They get to be the good guys.
This morning we went to a neighboring town’s park district to play at their little indoor playground. It was really neat, but there were so many kids there that it was like Romper Room on uppers. Thomas did really well with the large number of kids and I was very surprised! We went with Grandma and my sister-in-law and her daughter who is fifteen months old so I wasn’t all alone in uncharted waters. This park district also has an indoor merry-go-round; not a huge one but still an official midway ride that Hayley really liked. Thomas finally went on it and he liked it but wanted to - you’ll never believe it - pretend-drive the little kiddie cars they had in the play area. You know, the one with the red car body and the yellow roof that the kids use their feet to make go? Thomas was almost too big for them, but they were his absolute favorite things to play with. The rest of the play area was set up kind of like Chuck E. Cheese’s with all the tubes and climbing stuff. Thomas was actually really nice about taking turns with other kids and waiting for a turn himself. Every time I asked him to get out and let someone else have a turn, he did it without a fight. Sometimes he’d get out and walk around the car for a minute and if there were no takers, he’d ask if he could get in again!
As I said, he did really well listening and staying in-control of himself despite the fact that the place was overrun with excited children. This is a big deal for him because one of the reasons that Thomas’ teacher thinks he wouldn’t do as well in a regular classroom next year is that there would be a lot more kids and Thomas might find that difficult to handle. He didn’t mind it today and did a great job. Until it was time to leave. I’d say that he really had a fit, but he didn’t have a tantrum. He just cried and was sad. He kept saying, “Mommy, mommy, mommy! Please!” He was really upset and I think it was because I gave him no warning about leaving. Looking back on it, that was really stupid of me. My mother-in-law and sister-in-law were kind of ready to go out to lunch then because Thomas and Hayley’s little cousin could only handle so much of all that before getting over-stimulated and cranky herself. I kind of just walked over to Thomas and said that we were leaving. God, how dumb! What was I thinking? Isn’t it funny how you can look back on something and things are so obvious – it’s so obvious what you did wrong – but at the time you were confounded? I wasn’t exactly confounded; Thomas was having fun and didn’t want to go. But, duh! I could have told him “Okay, five more minutes!” That at least would have been better than what I did! Okay, bad mommy moment. Minus ten points. I did donate an old pair of glasses to a charity box yesterday though, so maybe that good deed balances my bonehead move out just a little bit.
Since I was so lame, I decided that we could go back to the little “inside playground” as the kids call it, tomorrow. Thomas is very excited and he asked me if he could drive the “baby cars” again. He was so nice about it today that I said he could. Playing there costs three dollars per child and that includes all the vomit-inducing carousel rides you want, so you can’t go wrong. It’ll be a little harder by myself with the kids, but I think it’ll be okay. The kids promised to let me do my house work (Friday is my cleaning day) when we got home – wasn’t that nice of them?
Luckily, there are only three more days of “spring” break left. This has been such a crummy winter that has held on until today and will continue; we could get 1”-3” of snow tomorrow. We had an insane snowstorm two days before Easter! What kind of spring is that? Finally, there is a sixty-degree day in the forecast; next Thursday. All of us really can’t wait for the cold and snow to be over with. And we have no plans for the rest of the break (except the inside playground tomorrow), which is a blessing, believe it or not. The kids are both so over-stimulated that a little routine is going to do us all good.
Did anyone see “Autism: The Musical” on HBO the other night? What did everyone think of it? We’ve only gotten through the first few minutes of it. I have a hard time watching that stuff with Jonathan because EVERY SINGLE CHILD Jonathan sees who is on the spectrum is “just like Thomas.” At the very beginning, the boy Neal is throwing chairs and turns a table over. Jonathan says, “Geez, that’s just like Thomas.” I looked at him coldly and said, “Thomas does not turn over tables and chairs like that.” No inflection in my voice, no intonation. The next kid does something and Jonathan says the same thing. So I get very frustrated about that, even when he’s right because I don’t really want to watch something that forces the two of us to constantly compare our son to other kids. That’s what you do when you see other kids on the spectrum like that. The whole time, I’m thinking, “Oh, Thomas is better than that kid, but not as good as that one. Thomas knows how to sit still in circle time, but he doesn’t seem as high-functioning as that kid.” It makes me feel like I’m dissatisfied with Thomas when I’m really not. And I just get tired of playing compare-and-contrast. The other thing was that we weren’t really sure (just from the first five minutes, mind you) why this woman decided to put on a show with an all-Autism cast. Some of the kids who were participating seemed so uncomfortable and eager not to be a part of it that we weren’t sure why they were being made to join in. Jonathan and I are focused on trying to get Thomas to engage in more normal behavior and socially acceptable behavior. For us, not being in a play is perfectly socially acceptable. Anyway, I don’t know if we’re going to finish watching the show or not.
Back to school on Monday! Woo-hoo!