My Autism Insights

I noticed a couple of new things about using music to help Gus focus when he’s doing his homework.  Typically, we use headphones and some sort of quiet, relaxation music while he’s working to help block out distractions. Monday we tried something different.

He hasn’t been using his headphones consistently, but I offered them to him Monday, and he accepted.  I showed him again how to work his MP3, and as I was scrolling through the albums to get to the one he usually likes, he stopped me.  He wanted to listen to Earth, Wind and Fire.  I wasn’t really surprised, but a little skeptical that he’d be able to work with disco pumping into his ears.  I decided to give it a try - he should be allowed to choose what he listens to - but I made the stipulation that if he didn’t pay attention to his work, we were going back to softer stuff.

Homework was completed in record time with minimal redirection or intervention from me.  Wow.

Yesterday I tried an experiment.  Instead of the headphones, I let him have his Earth, Wind and Fire playing from the computer, out loud.  What a disaster!  He didn’t even stay in his seat half the time.

So, apparently, headphones make a big difference, but so does the ability to choose what music is playing.  It stands to reason.  Adults don’t listen to the same thing all the time; we listen to what we’re in the mood for.  And for as much as Gus needs certain routines to remain fixed, the strategies that tend to work, particularly to help with his lack of focus, on any given day are always changing.  A true enigma, that one.  I’m curious to see what he’ll choose today: the Beatles or Mozart or maybe Weird Al?

Imagine you are heading to a friends’ new home for a housewarming (pretend it’s the days before Map-quest and Google-maps and GPS) and all the invitation says is to be a place XYZ.  How would you get there? You turn the envelope inside out, and there are no directions! Admit it, you’d be at least a little annoyed and might end up quite frustrated.  You might even just decide to mail a gift and not bother trying to find the place.  When you ask your friends about the lack of directions, they might say, “Oh, I figured you knew how to get here.”

If you’ve followed a route to a destination many times, it’s easy to forget that it’s not such an automatic process for everyone else.  This is a good analogy for how many parents give their autistic children (or even ADHD children) instructions.

I’ve been guilty of this as well.  I’ll often tell Gus, “get dressed,” and then 20 minutes later, he’ll still be in pajamas.  Once or twice he put his clothes on over pajamas.  It finally occurred to me that giving a child with auditory processing problems a multi-step instruction is probably not the most effective way to get things done.  I won’t even get into how badly “clean your room” usually works out.

Lately, I’ve tried a different approach - breaking down a general request into smaller component parts.  Instead of “get dressed,” I now start off with, “get dressed - pajamas off first…now put on your shirt…now put on your pants…great! close your pants…socks next…” His brain needs each step in the process, just like a computer program does.  Without the steps, the process can’t even get started, let alone completed.

Now, you might wonder if constantly reminding your child about these ’steps’ will make him or her less independent.  I think that, like many things, with enough repetition, these things will become automatic.  If you want to encourage more independence, you could try visual reminders in a sort of checklist format.  For example, in each of our bathrooms, we have steps for using the toilet (i.e. flush, pull up pants, wash hands) with pictures and words so that it was accessible for both kids. I’ll still ask if they’ve done each step after they come out of the bathroom, and I’ll get an exasperated, “yes, Mom,” but at least I know the checklists helped.  At some point in the next 30 years I’ll be able to stop asking.  In the meanwhile, I can shout a little less about things not getting done.

Manic Monday prompt from Mo

The other day, someone was asking about tools to help a teenager with high-functioning autism get more organized (I apologize for not remembering who/where this came from).  Kids with high-functioning autism, Asperger’s syndrome, ADHD, and other learning challenges can find it overwhelming and frustrating to keep track of all their responsibilities as they get older and expectations increase.  There are a few tools and strategies that may be helpful.  Some of these I use in my own home office because I seem to have a harder time keeping my own brain straight with every passing day.

Young Students & Pre-readers

When Gus went into kindergarten, he transitioned from an ABA program to a TEACCH program.   Each student had an office, a desk walled in by tall file cabinets that held the student’s instructional materials and files for the year.  The front of the student’s cabinet held his schedule, small laminated image cards to represent each segment of his day (think of PECS cards).  Each card had a Velcro back and the student could remove each task as it was completed.

With the help of Gus’s teacher, we adapted this system for home to help Gus in managing his routine without constant verbal cues from us.  For example, at bedtime, he could put up his cards and then remove each one (bath/pajamas/brush teeth) as it was done, right up to the point of getting in bed.  Until he was able to set his own schedule up, I could do it for him and he just had to follow it.  It was very helpful at the time.

Older students

There are several computer applications that work wonderfully for getting organized.  I personally use the calendar in Microsoft Office Outlook 2007.  But I also spend a great deal of time in front of my computer, so this type of tool is great!  Google offers a free calendar if you have a Google account.  If your child has a cell phone, many of them have some sort of calender function, or information from an online calendar can be imported into many of them. This may not seem appropriate for a special needs student, but it largely depends on the child.  Some students are much better interacting with technology than others.

The computerized calendars may not be practical for other special needs students, so my next best suggestion would be the Flylady system.  I have no affiliation with Flylady, except that I’ve used her suggestions, and even though I fall off the wagon regularly, they’ve helped me a great deal.  She offers a section of her site geared toward kids including tips specifically for students that can be customized any way they need to help get organized.

You can also get creative and work with your child to create the organization method that best suits him or her.  You can have loads of fun with a large desk sized calendar and some stickers, or perhaps your child is tech savvy and responsible enough to handle more sophisticated tools.  How do you help your child learn to become more organized?

Our last ‘holiday’ activity was to take a trip into New York City to visit the Swedish Cottage Marionette Theater located near 79th Street and Central Park West (there’s an entrance across from the Museum of Natural History).  You may question, “Why not visit the Museum?”  For a kid like Gus who gets overwhelmed with sensory overload very easily and wants to be everywhere at once, the Museum is fun, but it’s also an endurance trial that greatly shortens the length of time that he can manage himself.  The puppet theater, however, was just his speed.

We saw a production of Peter Pan.  The show lasted 55 minutes, perfect for short attention spans (of a 5 year old and a 7 year old with ADHD symptoms in addition to his Asperger’s).  It’s a very small theater, so even at its most crowded, there aren’t but so many kids.  It wasn’t very noisy or busy, and even the little bit of chatter before the show started was annoying Gus who was trying to listen to the music playing.  He coped.  Once the show started, he was thoroughly engaged and sat through it, probably better than some adults who were (very rudely) up and down, in and out of the theater.  At one point during a set change, there was music playing and a disco ball shone lights on the curtain, stage and ceiling.  It was like when Gus was a kid and used to get mesmerized by the ceiling fan or the wind blowing through the leaves in the trees.  Complete fascination.  Even MM got a little zoned out watching the lights.

It was a very long car trip for us, but worth it in the end, despite the obscene parking cost and the subsequent back pain I’m dealing with today.  We thought about taking the train and then subway, but I was worried about Gus getting overwhelmed and overly ‘bouncy’ in what would be for him a dangerous environment.  In the car though, the kids had a packed lunch and chilled out listening to their favorite music.  We got there early enough that they could spend some time at a playground near the theater to work out some of their energy before having to sit through the show.  Before making the trek home, we stopped in the boroughs to visit with my sister and have a bite to eat.  They slept on the ride home - easy peasy.

Many times it can be a challenge to find entertainment for children on the spectrum because of all the sensitivities to their environment.   I’ve found that little excursions to things like community theater, the puppet theater, smaller kids museums, or outdoor activities have worked best for us.  Both kids enjoy their time without getting sent over the edge.  And that works for me.

Happy Winter Solstice!  In keeping with our family tradition, we got up early this morning and went outside to greet the sun.  From now on the days will start to gradually lengthen - what’s not to celebrate?  As we trekked through calf-deep snow (knee deep for poor MM) I realized what a sensory wonderland it was for Gus!

I’ve read that kids with ADHD and many on the autism spectrum do particularly well when they can spend some time out in nature.  I’ve found this to be true for Gus (Asperger’s and borderline ADHD).  I did some videotaping and tried to experience the moment from his perspective.  I’m not expert at video-making yet, but here’s a brief glimpse of our trip to the lake this morning:

• Trudging through the snow allowed Gus to use his large muscles providing proprioceptive sensory input and also strengthening the weaker core muscles.
• Being bundled in several layers of warm clothing gave him some deep pressure (squeezing) which tends to be calming for him.
• At one point, Gus lay down in the snow which also provided deep pressure with the added bonus of a snow angel thrown in with the deal.
• Early morning, cold, snowy day - very quiet and heavenly for a child with noise sensitivity.
• The rushing wind created a white noise that added to the soothing feel, especially when listening to it through a jacket hood.

On the way back, we decided to take the long scenic route, and I noticed that Gus was exuberant and loving the morning, but not in the manic way we typically see when he’s racing through the house.  That was a gift in itself!

Speaking of gifts, the kids were allowed to open a couple of gifts last night and this morning.  Celebrating both Solstice/Yule and Christmas helps to mitigate some of the craziness of Christmas day.  They get less overwhelmed by too much ’stuff’ and can take the time to enjoy their presents a little at a time.  He loved the mini Hot Wheels set and the new Leapster game; the MP3 player didn’t go over as well as I thought.  Perhaps when he learns to use it, he’ll warm up a little to it.

So that was our morning.  How does your special sensory needs child do with outdoor/nature time?

image borrowed from Sheppard Software

So we were doing this vegetarian experiment for a week to see what the effect would be on the family: Would Gus focus better or would he start having sleep issues again?  Would MM start eating more?  Would I have more energy?  DH was just going along for the ride and wasn’t looking for any changes to occur.  Last night, after dinner, we took a vote.

“So, what do we say?  Vegetarian or cAAAARRGHnivore?” I said in my best squinty-eyed pirate voice.

I looked at Gus and he didn’t answer, so I figured he was just going to ignore the question, but then he said, “Omnivore.”  Sounds right.

MM: “Omnivore.”

I didn’t even have to ask DH who was trying his best not to laugh.  He admitted he’d already abandoned the experiment earlier that day.  “Omnivore.”  My vote was unnecessary because I’d have been outvoted anyway, but it would have been unanimous.  We all want our meat back.

The Details

The week started off well with individual veggie pizzas.  That was the night Gus wokeup in the middle of the night, but I think if I’d made a whole grain crust (very easy to do with a bread machine as long as you plan ahead) that might not have happened.  For day 2, we had a 3-bean chili, which I’ve made before.   That went over well.  Monday was bad.  That was the meatless loaf day and I can’t even write about it again.  Just.  Bad.

We recovered on day 4 with pasta served with a portobello & black olive marinara, and thankfully I redeemed myself in my family’s eyes.  But then we hit a snag.  Thursday turned out to be a really crazy day that included lots of manual labor.  By the afternoon I was exhausted, I  didn’t feel like cooking, and I was in a very blah mood.  Normally, that would be a hot dog night - no thought or effort involved.  It would have been safer.  We had agreed to have salmon cakes one night during the week, but I didn’t have the energy to make them, so I improvised.  The result was a sort of weird fisherman’s pie (like a shepherd’s pie with salmon and potatoes instead of lamb).  We will never speak of it again after this post.

The salmon debacle signaled the beginning of the end.  I think we were all starting to crave a burger, but we carried on into Friday for a whole wheat spinach and cheese lasagna.  Epic win on that one!  And if I had known how easy it would have been to make, I would have done it on Thursday.  Hindsight and all that.  We wrapped up the week with a whole wheat baked macaroni and cheese served with a huge helping of broccoli.  MM demanded leftover lasagna, but it really wasn’t bad.  She wanted orange cheese and I used white.

Changes?

MM ate spinach and she started requesting lettuce in her salads.  Otherwise, she’s not eating any easier and will manage to find something wrong with whatever I make.  No big change there.

Gus did better than expected in the sleep department, but as far as school, his week was so-so.  He did break out of his passive mode on Monday to berate me (deservedly) for the meatless loaf monstrosity, so it was good to see him stand up for himself.  Otherwise, no change.

One problem I had was that our diet suddenly included a lot more cheese than usual.  My stomach was not too pleased.  Beyond that, I didn’t feel too different.  My energy level seemed more effected by the weather than by our diet.  However, a week is probably not long enough to really feel a difference, and since I have tried this before I know that after a time, I would have had more energy.

DH wants a burger.  Or at least some chicken.

Conclusions

We can handle a few vegetarian meals a week, but ultimately, at this point in our lives, we still need some meat in there as well.    For a long time, I’ve avoided vegetarian cooking altogether because I thought it wouldn’t work for Gus, but some simple adjustments in the types of carbs we give him made it work.  So it’s straight to the middle of the road for us.  Perhaps less red meat, better carbs and more willingness to eat some veggies.  I’d say the experiment went pretty well, all things considered.

Vitus Bering - the real discoverer of Alaska

A day off from school can be a very enlightening thing.  Gus was home yesterday, and although I always do homework with him after school, it was a different experience doing it earlier in the day.  He absolutely did not want to do the work when I wanted him to and there was a good deal of acting out: rolling on the floor, loud talking, purposely filling in incorrect answers…I was frustrated, he was annoyed - actually this sounds like a typical day, except for what happened next.

Gus was (has been for several days) fixating on geography: who discovered ____; what’s the capital of ___, that sort of thing.  So, instead of doing his reading assignment or his math problems, he was going on about that.  Finally, as he was rolling around on the floor asking about who discovered Alaska, I said, “Well, I think Admiral Perry started out with 3 ships and then 5 more ships followed along.  How many ships got to Alaska?”  Booyah!  Instant transformation!  We got through a sheet of 3 digit addition, 3 digit subtraction, the stupid reading assignment about how to meet a dog (he hates dogs) and then he asked for, DEMANDED, a third math sheet.  He did not want to stop working.  Amazing how such a small shift completely commanded his attention.  Each problem became a made up story about some exploration to some country.  By the way, I stink at geography and I was spouting more crap than a newborn, but he didn’t care - I was working with him on his terms and he loved it!

So this begs the question, “Why can’t his teachers do the same thing?”  First of all, why is what they want to teach more important, more significant than what he wants to learn?  Does he really need to know the proper way to greet a dog?  It’s totally irrelevant to him - he’d be running in the opposite direction.  However, Admiral Perry having to fight off a team of sled dogs because he approached them the wrong way is pretty darned entertaining.

I looked back at some of his assignments, and aside from their irrelevance to his life except for the fact that they were readings about animals and he likes animals (I like chocolate chip cookies, but too many and I will still get sick to my stomach), there was no context.  For example: there was a booklet of geometry questions.  Across the top, he had written, “NOOOOOOOOOOOO!!!”  That was a hint right there that he wasn’t interested in the assignment.  But I wonder, if the teacher had sat him down and said, “Pikachu is battling Paul’s Electabuzz and the only way to make his volt tackle work is if he can bounce off a tree at a right angle.  Find the right angles.”  I bet he would have found them all in a matter of seconds.

I’ve been told on a regular basis that my son can’t or won’t focus.  He’s not the problem here, I’m starting to think.  He can focus just fine - on the things that interest him.  Is it his job to shift his interest to what the educational system thinks is relevant and important, or is it their job to present the information to him in a way that will engage him?  I won’t even dignify that with an answer.

The point is that we have to stop laying blame against people who are just being who they are, and as caregivers (parents, teachers, administrators, therapists, physicians) we need to get over ourselves.  What we think is significant ain’t necessarily so.  If we are going to have any hope of helping individuals on the autism spectrum, or with ADHD, or any kids for that matter, we need to start allowing for some creativity and flexibility in thinking.  We’ve got to think out of the box a little and stop being so draconian - let’s at least meet them halfway.  Can it really be that hard?  I somehow don’t think it is.

P.S. Rear admiral Robert PEARY discovered the North Pole(this is disputed); Vitus Bering discovered Alaska; Henry Hudson did discover Manhattan, but Peter Stuyvesant did not discover New Jersey.  Pikachu did in fact kick Electabuzz’s butt.  Fat lot of good that traditional education did me.  I’m sure Gus will figure out the truth about all these guys, I doubt I’ve done irreparable harm.

After two straight nights of middle-of-the-night wake-ups, I finally decided to do some further research into the use of melatonin for sleep disturbances in children.  Gus falls asleep fine, but wakes up in the middle of the night.  Sunday night, he got some water and went right back to sleep.  Last night he got up about three times and did not want to stay in his room.  He’s not complaining of nightmares.  Last night he was sweating, so he was clearly too warm (don’t know why - it got cold last night) but the night before he wasn’t - he just woke up.  This has been an ongoing problem, and I’m starting to wonder if it’s not just waking up, but if he’s really not getting good quality sleep, which might  effect his performance at school.  Hence the decision to try melatonin.  That and I need to sleep.

There were dozens of articles that came up in my search.  I mainly looked for possible side-effects, appropriate dosages, whether or not age is a factor, and for a general overview of what exactly the stuff does in the body.

Melatonin is a a hormone that occurs naturally in the body, usually secreted by the pineal gland when the brain perceives darkness.  It basically regulates the body’s internal clock, among other functions that are not sleep related.

While the bottle says that it is only to be used for adults, almost everything I’ve read suggested that in very low dosages, it’s fine for children and teens for a short period of time.  I also noted that many of the studies done on its effectiveness/safety in children were done with children having special needs.  In children under 15, the recommended starting dose (according to one site that was the most conservative starting dose) is under .3 mg per day given at bedtime.  More than 1 mg per day may create problems, like seizures, so if you really felt the need to use that amount or more, you should consult a doctor.  Melatonin also interacts with certain medications(for good or ill)  - another reason to consult a doctor before using it.

Some resources for further reading:

University of Maryland Medical Center

USA Today

Keep Kids Healthy.com (2002 article)

Anthony Kane, MD

Andrew Weil, MD

PubMed

These are just a few articles to start you off.  I also wanted to note that we do use behavioral means of helping Gus sleep, which is the main reason he falls asleep fairly easily.  Television goes off an hour before bedtime, and we have a very consistent bedtime routine.  So, we’re going to try a very low dose - about .25 mg for a few days to see how it goes.  The goal is to get him sleeping through the night again to see if his body will regulate itself.  I doubt we’d use the supplement for more than a couple of weeks at most.

If there’s anything I’ve missed or gotten wrong, or if you’d like to share any additional advice/thoughts on melatonin use, please feel free to comment!  And wish us luck (or sleep even)!

Prompt from Mo at Manic Monday .

Hmm…things that we have a bounty of in our lives right now:

Days off and half days -  These are bountiful this month and next.  Between holidays, parent/teacher conference days, and any other reason the district can find to shut down,  Gus will be home an awful lot.  So much for the consistency and structure that he needs in order to function.  However, we will get the opportunity for some home learning.  Unfortunately, this also means less time during the day for me to work.  And when work does not get done, the paychecks are not so bountiful.

Toys and stuff that needs to not be in this house - Every year when the holidays roll around, I try to weed out toys that are a) no longer age appropriate b) broken c) not ever played with.  The toy chests are overly bountiful.  The purging never seems to work, which is becoming a problem.  Gus has a hard enough time focusing without having a gazillion options.  Also, trying to help him learn to be more independent in cleaning up after himself becomes even more difficult for him when the amount of things he has to be responsible for is so overwhelming.  And his is the more organized of the two kids’ bedrooms.  Don’t get me started on his sister’s…

Cheese - If I had known how bountiful the joy would be just from such a simple thing as being allowed to eat cheese, I never would have stripped it from Gus’s diet.  He’s been eating dairy again for a few weeks now, and I haven’t seen a significant difference in behavior or focus.

So, to sum up, if it was not clear enough, kids on the autism spectrum (and probably kids in general) benefit from structure and consistency, are not helped by clutter, and are not harmed (unless there is some other gastric sensitivity or allergy) by dairy products.  And that’s all she wrote today.  Your thoughts and comments are greatly appreciated!

These videos came to my attention courtesy of my sister-in-law.  They’re both quite beautiful in the sentiments they express.  The interesting thing about the timing when I got these videos is that I also got a book - work related - about the gifts of ADHD, not exactly the same, but similar enough.  If the universe is trying to tell me something, it’s certainly not being subtle!

The first video is entitled When God Created the Autistic Child, and the second is Autism: Not As Strange As It Seems.  With the second, you have to be sure to watch the entire thing before drawing any conclusions.

Hope you enjoyed them and please let me know what you think!