The Interactive Autism Network (IAN) Project has released its Parental Depression History Questionnaire, in which parents share “their experiences of the challenges involved with raising a child on the autism spectrum.”

Part one of the report explores “stress associated with child-focused issues, such as challenging behaviors and erratic sleep habits.” Part 2 will address additional issues, such as the impact on finances or marital relationships.

I haven’t read the report — I’d like to, in the same way traumatized Vietnam vets wanted to see Platoon — but I have a feeling it reads like a template for a lot of lives.

“For many families,” the report opens, ”the experience of raising a child with an ASD begins with a feeling that something is not quite right. Perhaps during infancy, the child seems to be behind in development …” (”Jeff… he doesn’t look at me.”) “Eventually, as the feeling grows stronger, the family may seek a diagnosis to explain the child’s emerging, more pronounced autistic behavior.” Oh yeah, the doctor with the dolls, who didn’t take insurance.

“Whether the diagnosis comes earlier … or later … chances are the family is already under considerable stress. No aspect of family functioning is unaffected.”

Sounds spot-on so far. Autism jerks every aspect of our life like fish jerking a line.

The report (findings are still listed as preliminary) cover child behaviors such as meltdown and aggression; parent self-esteem and feelings of competency (I take the silent, seething, knitted-brow approach to such moments, and one teacher surveyed said her parenting experience “has completely blown my confidence” as a professional); improvement of behavior over time; “other people and their lack of understanding” (how long is this report?); sleep disruption and its exacerbation of stress (“well over 50% of the problem, I think,” said one mother, and “it’s literally killing my family” said another parent); and treatment issues.

“I am so tired,” concluded one parent, “of fighting.”

The report is well worth reading.

Image: IAN

Next week Jeff and I are planning to catch a few movies at the Sprout Film Festival, an annual showing of movies portraying people with developmental disabilities. “People with developmental disabilities as subjects and performers remain marginalized in film and television,” the organizers believe. “This festival aims to raise their profile by showcasing works related to this population.”

Last year I gave a talk about portrayals of people with developmental disabilities in mainstream Hollywood movies (”Rain Man,” “Pumpkin,” “What’s Eating Gilbert Grape?,” “I am Sam” — I have a very long list) and how they mostly don’t get it. One movie I haven’t seen but which I think is smart and sensitive  is being shown at Sprout this year, which is unusual since they mostly show documentaries or feature films made by people with disabilities.

“The Eighth Day” stars Pascal Duquenne, a Belgian actor with Down Syndrome.

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Through Chun Wong I found out that AMC has paired with Autism Society of America to present monthly viewings of movies for families with special needs kids. I love this idea. We’ve taken Alex to a couple of movies (not his favorite form of entertainment since theyrequire a) sitting still and b) enjoying something new) and it was sort of OK. His teacher has been more successful mostly because Alex doesn’t put on the same show for her benefit that he puts on for us.

In addition to the $6 ticket price the movies are usually at 10 in the morning, a perfect time to enjoy a children’s movie and not spend your whole day doing it. Besides, I don’t care if it’s going to be stupid. I want to see Night at the Museum 2.

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Every now and then I dream Alex can talk. Really talk. We have a conversation; he tells me how he’s feeling. I never really remember what we talk about. Only that we talk. And that in the dream I’m aware of a feeling of a deep relief. Thank god. That long period of not communicating is over.

Apparently I’m not the only one who has that dream. These are the comments of other parents on Cafemom who also have it. I feel bad complaining sometimes, because another thread talked about what you wished your child could say. Many moms longed to hear “I love you” and “Mommy” and “Mama.” I’ve heard all those, and they were thrilling. I just wish Alex could tell me what he’s thinking now and then.

Image: Amazon

Lack of sleep makes everything difficult. Scratch that. Lack of sleep makes everything impossible. It’s 2 in the afternoon, the living room is mostly still a mess. (I did manage to pick up some papers and put the boys’ books, lying on the floor, in one stack on the coffee table.) Usually by this time I have a clear plan  for dinner. At least I know what I’m going to make. But today I don’t have a clue.

Should have bought some semi-prepared thing at Trader Joe’s this morning, where I was picking up Hebrew National hot dogs for Alex (only $3.99, as opposed to $5.19 and up everywhere else) but nothing seemed that appealing. Ned will be home in 90 minutes, and in two and half hours Alex will be too. Then things will get busy, so I really need to get my ass in gear.

The problem: last night at around 2:30, Alex woke up. I heard his footsteps scurrying toward us. I heard him laughing. “Alex, go back to bed!” I called, using the Firm Tone of Voice. More laughing. Sighing, I had to get up and get him settled. Jeff does this quite often, but he was getting up at 6 a.m. to put Alex on the school bus.

Our middle-of-the-night routine (and I wish we didn’t have one, didn’t HAVE to have one) is that one of us takes Alex back to bed. Gives him a premixed dose of melatonin. Says firmly, Head down! And heads back to own bed in hopes (very optimistic, in my case) of more sleep.

So, yes, I am forever hand-wringing about how Charlie doesn’t have enough verbal language to tell me things, like his stomach hurting and why in the world he is squinting.

And, like whether or not I already gave him a tablet of melatonin. Last night, I said I was going to, walked into the kitchen, realized the counter needed cleaning, did that, then, I can’t remember. I thought about it and took out another tablet and walked into Charlie’s bedroom, where he was so busy jumping and bouncing on his bed that all the blankets and pillows had fallen off it.

“Melatonin,” I said.

“No,” said Charlie.

“Did you already take it?” I asked.

“Take it,” said Charlie.

“Ok, let’s tuck you in,” and I picked up all blankets and pillows and straightened out the yellow fleece blanket. “Good night,” I said.

“Good night,” said Charlie.

He was out like the proverbial lights in 10 minutes.

Obviously, he knew what he was talking about.

Here’s an alarm clock that doesn’t mess around, either reading AWAKE or SLEEP. According to its creator, the clock works on a 4-hour cycle; by following the directions, a user is supposed to be able to “enjoy the benefits of a 21-hour day”—-which is kind of how long of a day some parents of autistic children feel they have. Yesterday’s Translating Autism reviewed a new study, Sleep Patterns in Preschool-Age Children With Autism, Developmental Delay, and Typical Development:

Children with autism slept significantly less during a 24 hours cycle than children with other developmental disabilities and typically developing kids. In regards to awakening events during the night, typically developing children had more awakenings than children with autism, but the awakenings episodes of children with autism were significantly longer. This suggests that while children with autism do not seem to have difficulty staying asleep, they do experience difficulty falling asleep after sleep interruptions.

In regards to parental reports about their children sleep patterns, parents of children with autism reported significantly more sleep difficulties than parents of typically developing kids but not significantly more than those reported by parents of children with other developmental problems. However, parents of children with autism reported significantly more personal stress than parents in the two comparison groups.

Charlie was a great sleeper as a baby—sleeping through the night at 2 months old—then, especially around the time he turned 7, he started to have a harder and harder time falling asleep, staying asleep, and waking up in time to go to school. For the past year and several months, we’ve been giving Charlie melatonin, and this has helped him to the sleep regularly. We also make sure that he has good, physical exercise during the day and a consistent, calming bedtime routine. About once a week he wakes up at 5am; since school doesn’t start until 9am, we try to get him to sleep more, but it’s usually very hard and then he’s sleepy when it’s time to run out for the bus.

Naps during the day tend to make it very hard for Charlie to sleep at night and his whole sleep schedule is off. Nonetheless, very Saturday lately, he’s been awaking around 8 or 9, running around, playing the piano—-and then settling on the couch and conking out around 11. I think back to my childhood, when summer was truly lazy, with summer school sometimes and reading lots of books. Charlie on the other hand has to go to school and we like to stay busy, and he is a fast-growing 11-year-old boy, in need of some restorative snoozing. So the clock is set to SLEEP now.

Until it’s time for a swim party we’ve been invited to.

Summer school, that is—-Charlie’s first day of Extended School Year is tomorrow. (Yes, we’re back in Jersey, courtesy of a red eye to Newark Airport.) His last day of the regular school year was last Thursday so he’s only had a few days off. From experience, this very brief break is the best thing for Charlie, who’s most at ease when things are orderly and routine. I wasn’t surprised that he missed his dad and home (and that he tried to walk back to Jersey, all the way from California). I think it’s important to “shake things up” occasionally or the routine becomes like a box that we can’t get out of, and Charlie grows a little with each trip and the change it entails.

One inevitable change of visiting the west coast is the time difference. Since our trip was just for a few days, Charlie and I did not really settle into “California time” which is as well, since the bus is coming at 8.35am Wednesday morning to take him to his first day at ESY, at the middle school with his new teacher. Charlie actually spent a good deal of time on our trip sleeping: He’d wake up around 6 or 7am, lie around, jump into the bigger bed I was sleeping in, pull the sheets and blanket around himself tightly, and doze off till noon (or probably later, but we woke him). Guess he’s been catching up on his sleep after a very busy school year.

And come September, Charlie will have to be up even earlier than he was last year, as middle school starts at 7.45am instead of 9am. In contrast to what a recent study says about delaying an adolescent’s school start time by one hour as having a positive effect on his or her cognitive performance, I’ve been thinking that the earlier start time might work out better for Charlie. Too many times last year, he woke up around 6am (sometimes earlier) and full of vibrant energy, talking a lot, and generally to get going. Often he’d get dressed on his own and was clearly dismayed that (as Jim and I told him) he’d “have to wait.” Too many times Charlie would start dozing off just before he was due to go get the bus and those moments when he was alert and rarin’ to learn were missed.

Anyways, the earlier start time is for the fall and, ESY or not, summer’s the time to stay up a bit later, go for twilight bike rides and fast runs to the beach, and just hang. It’s still summer and we have to make sure we’re up enough to have some fun.

But we’re all glad that school will soon be back on.

There’s one thing that determines when I sleep: When Charlie goes to bed. (So, in his pre-melatonin days, when he fell asleep at midnight at the earliest, “bedtime” for me took on all the aura of some kind of promised land.)

According to a new study in the Journal of Labor Economics, the schedule for TV shows, rather than natural circadian rhythms, determine the times when most Americans sleep:

In their forthcoming article for the Journal of Labor Economics, “Cues for Timing and Coordination: Latitude, Letterman, and Longitude,” authors Daniel S. Hamermesh, Caitlin Knowles Myers, and Mark L. Pocock look at the brief fight between American’s natural timing cues — the circadian rhythms determined by the sun — and the man-made cues brought on within the last century, mainly by the creation of time zones and the television broadcast schedule. In this relatively brief time, they find, the markers for how we structure our day have been dramatically altered.

Guess we are in the minority and not only because we currently don’t have a TV: Charlie has never been a big TV watcher himself; when the sun rises and when it sets regulates his sleep patterns (and, consequently, mine). The advent of Daylight Saving Time and the change back to Standard Time usually create some minor disturbances for him: Charlie runs by his internal clock and, even though the time difference is only one hour, the change in the time for the start of school and mealtimes sets things off. (Charlie does not yet know how to tell time using a clock; he’s been working on reading time on the hour and half-hour on a digital clock at school.)

Charlie has also come done with the cold/flu thing I had last week and passed the better part of Saturday in slumberland on the couch. He had a fever and a gurgling cough, and seemed the better for his long nap. He woke around 6.30pm and we asked him if he’d like to get take-out from his favorite hamburger place, which he had been calling for earlier in the day.

“No takeout!” said Charlie. He named the hamburger place and added “Sit.”

Which, in the middle of a severe rain deluge and heavy winds that rattled like a car engine, we did. Good to be back on the usual schedule of things with Charlie.

It’s not the case for every family with an autistic child that I have met, but “lack of sleep” (for the child, for the parents) is a fairly frequent topic. For the past year-plus, we’ve been giving Charlie melatonin, an over-the-counter dietary supplement, to help him sleep, after a period of him falling asleep every night past midnight at the earliest (and having anot-so-great day at school afterwards). Researchers at the Vanderbilt Sleep Disorders Center have found that melatonin “shows promise” in helping some autistic children fall asleep. The Vanderbilt News Service reports:

The study is the largest of its kind, looking at the medical records of 107 children with autism, ages 2-18, who had tried varying dosages of melatonin for insomnia. Twenty-five percent of parents reported they no longer had sleep concerns after using melatonin, 60 percent of parents reported the sleep problems had improved, 13 percent still had major concerns and only 1 percent (one child) had worse symptoms. Only three of the 107 children studied reported mild side effects.

Guess we’re in the 60 and 13 percent groups. The study is published in the February Journal of Child Neurology.

Besides the melatonin, other things that have helped Charlie get his forty winks are: a regular, quiet, bedtime routine and daily physical, aerobic exercise. Lately he’s also been very particular about making sure that one fleece blanket is spread over his sheet, three other fleece blankets (two which Charlie has had since he was a baby) are folded and stacked just so at the foot of his bed, the blinds are drawn up, his blue backpack and photo bucket and CD case are beside his bed—all the better for secure, sweet dreams.

Photo courtesy of psycho röy via Flickr