My Autism Insights

Why would a “hyperactive” kid not jump at the chance to go out to play or to go to the beach? Gus had to be dragged out to the beach today. He might still be tuckered out from our camping trip, but it seems that he has been getting especially drowsy from the Strattera. I’ve noticed a certain lethargy lately, followed by crankiness, that is very out of character for him. It’s depressing, to be honest. Autism didn’t steal my son, but apparently, Strattera is making a good go of it. The things he loves are only providing half the joy they used to.

At the beach, he was so zoned out that the minimal focus he may be gaining (which I don’t see any, personally) is pretty much negated. He’s become unresponsive; it’s like he’s regressed to where he was a year ago.

And of course since he’s not noticing what’s going on around him, less than he had been prior to being on the meds, he was doing things to irritate other people on the beach like the kid who called him “weird” and started splashing Gus and yelling at him. (Ironic side note, the kid didn’t want to be splashed, yet felt the need to keep splashing Gus when Gus was moving away instead of just stopping. I won’t get started on how much I want to pummel kids who go out of their way to be mean to my son.) Then there was the woman who got splashed and Gus had to get out of the water. She looked annoyed, but at the same time, if you’re in a lake with a bunch of kids splashing around, isn’t it kind of expected that you might get wet?

Anyway…

One more week of this stuff, and then I’m politely telling the doctor where to stick his prescription. Gus has had his “significant length of time on a good dose.” I’m done with it.

Now that Keith Kennedy has been found after he went missing for a week (I learned of this over at AutismVox), I feel a little better about our annual camping trip.  We’re going to a familiar place, which has it’s pros and cons of course.  The good part is that Gus is very comfortable there and won’t necessarily feel the need to see and do everything at once.  The down side is that Gus is very comfortable there and sometimes gets the idea that he can go where he wants, when he wants, without letting anyone but the chipmunks under the cabin know about it.

We take the precaution of having an ID bracelet, but if we can’t find him, that doesn’t help us much.  I considered getting one of those kiddie lojacks, but haven’t found one that will work for us yet. 

When Gus was about three, we went on one of our usual camping trips and I tried the Mommy I’m Here Locator.  If he was getting too far, I would press a button, it would beep and he would come back.  It worked for a short while, but it increasingly started to annoy him to the point where he would do a sort of jig before returning to me.  Toward the end of the weekend, he went out into the middle of a field of grass taller than he was (how he escaped a single tick is still a mystery), took the little teddy bear off his show and left it in the middle of the field.  Teddy was never seen again.  So much for that. 

There was anotehr one called Angel Alert or some such thing, but it never worked at all.  In other words, I could barely turn it on.

I thought about the Ion Kids locator, but I’m very skeptical.  So in the meantime, we just make sure that Gus is never left unattended, and someone shadows him at all times.

If anyone knows of a better locator device or an affordable GPS (the Wherifone may be an option when he’s a little older), I’d love to hear about it.  Now that I’m not working weekends anymore, I see a bunch of camping trips in our near future!

So another week has gone by and I have a few things to be thankful for:

1. Gus can be a pretty inconsistent kid in the sense that what appeals to him changes quickly.  But, his personality is very consistent.  That helped on Friday when his teacher sent home a not that he’d pushed another child.  I knew instantly that something was wrong.  Turned out he had strep and we were able to get him treated before vacation!

2. School’s out and we get to go camping!  Gus absolutely loves the outdoors and we’ve all been looking forward to this trip for months.

3. Almost as soon as we get back, summer school starts.  Gus is at his best when he has the structure of a school program.  It doesn’t bother him to go to school in the summer - he rather enjoys it.  And it saves me from having to come up with funding that we don’t have to pay for a special needs camp, which (to my knowledge) isn’t available to us where we live anyway.

By all means, please post some happy, thankful, thankfulness below!  And have a great weekend!

Gus is just getting over a weekend-long bout of strep throat, which his sister has conveniently contracted (luckily before our vacation).  As much as it has been a miserable experience for both of them, it’s also provided for some teachable moments.  For a child who needs to learn as much about social cues and consideration for others, I take what I can get.

One of Gus’s greatest strengths is his memory.  He has been known to remember a person he met only once without any hesitation.  The same went for his recent illness.  He remembered every icky sensation, wanting complete silence, not being able to move a muscle.  So when he was feeling better and his sister was in the same boat, it was very easy to teach a bit of consideration and compassion.

He wanted to play and M was lying listless on the couch.  This was almost an exact replica of two days ago.  (Except instead of shoving a toy in Gus’s face, she dove on top of him; I was hurting just watching it.)  Instead of just telling him to stop because his sister wasn’t feeling well, I took it a step further.

“Remember the other day when M was trying to play with you and you just wanted to rest?”  He remembered and backed off.  I gave him similar reminders about making noise while she was trying to sleep and about making a mess in her room that she wouldn’t have the energy to clean up. 

I think he got the messages.  Much of the day he played away from her and he seemed to be making a real effort to give her space.  It’s not that Gus has no inborn empathy, he just doesn’t always notice what’s going on around him.  Hopefully, when I come down with the bug making its rounds through my home (before vacation would be nice), the lesson will carry over and he’ll actually allow me a few moments of quiet.

What do you get when you cross strep throat, ADHD medication, antibiotics and a power outage?  In this house you finally get to sleep!

Gus woke up three nights in a row: Saturday, Sunday and yesterday around three in the morning each day.  I thought it was the Strattera messing around with his sleep cycle.  But apparently, he had strep throat.  One would think that it would make him extra tired, and it did, except instead of sleeping at night or sleeping late in the mornings, he was conking out midday. 

We took him to the doctor yesterday and she prescribed an antibiotic, which knocked him out, again, in the middle of the day.  I had no expectation that I’d get to sleep all night.  But that was before I factored in the power outage!

We came home from the doctor to a power outage that was supposed to last a couple of hours and ended up lasting overnight.  Gus was less stressed by the changes in routine (or maybe these outages are becoming too routine) than usual, and he went to bed exactly on time.  And slept.  Until five-thirty!  Miraculous!

Was it the absence of the noise machine?  Was he feeling better after a couple of doses of Amoxicillin?  Maybe it was the soft yellow glow of candlelight instead of the harsh blue of his night light.  Who knows?  All I know is that he had a full night of rest, and so did I.  I may just schedule a mini-blackout every time he gets sick or has trouble sleeping.

Yoga and meditation can be a great way to cope with the stresses of life, especially when autism is a daily part of it. Although I’ve been a yoga teacher for six years, I’ve never been very drawn to classic meditation where you sit on a cushion for log periods of time clearing the mind. For me, the movement through yoga postures is what has usually helped me to focus and get my head back on straight. But yesterday, I decided to take a meditation class and was pleasantly surprised.

I typically have trouble sitting still - my body just doesn’t like it. As a result, I get distracted and can’t find stillness. Yesterday was the second morning in a row that I’d been roused from sleep at 3 am and I was exhausted. I thought I might fall asleep. But for some reason, I found myself able to find my breath and follow it to a quiet spot at the core of my mind. I thought I’d only been in meditation for a few moments, but actually sat for a straight thirty-five minutes! I felt very calm for the rest of the day.

Parents of autistic children can benefit from yoga and meditation because it helps them to find reserves of patience and understanding in those moments when they may feel they’re at the end of their rope. These practices are also quite beneficial for individuals on the spectrum. Yoga and meditation can help build coordination, balance the nervous system, increase focus, and build confidence. Yoga is also wonderful for enhancing brain development.

Gus has taken yoga in the past and loves it. The slower movements allow him to get a grasp on his body despite his coordination being a challenge. There haven’t been any classes lately that we have been able to fit into his schedule, but the summer may prove to be a bit more flexible. And if you’re wondering why I don’t teach him myself, it’s because I’ve tried and the practice becomes oxymoronic and stressful. Occasionally we will play yoga, but there are just too many distractions in our house for him to be able to really benefit.

If you can get out to practice yoga and/or meditation, or if you can find a few minutes at home, I strongly recommend giving these ancient methods a try.

During the winter, instead of using a single fiber-filled comforter, I’ve learned to layer blankets on my son’s bed. This has the effect of keeping him warm and providing a nice amount of weight to provide soothing sensory input. But in the summer, when it’s too warm for anything, how can that sensory need be met?

I have another friend who had a similar issue with her teenage son who would also insist on wearing long pants and sleeves. But there’s a big difference when a seven year old sweats and when a teenage boy sweats. Yet still need some sort of weights in order to sleep well.

You could always run the air conditioning (if you have it - my son does not and will not have an AC in his room) and then pile on the blankets, but with energy costs on a rapid rise, that may not be the smartest thing to do. So there must be something that is heavy enough, yet lightweight enough. Here are my two ideas:

1) A Mexican yoga blanket - These don’t offer the perfect solution, but they certainly help. They tend to be weighty, but still breathe so are not extremely hot. They are also not very expensive. We use ceiling fans, so the combination of ceiling fan and three-pound blanket is not bad.

2) Tight tucking - Sometimes deep, squeezing pressure can be a good substitute for weight, but if a child is particularly squirmy (like Gus), a top sheet sized to the bed may not stay tucked in very well. I purchased top sheets for Gus that were a size larger than his bed. That way, they can be tucked all the way under the mattress and he stays nice and snug.

Those are the two things I’ve tried, and they have worked reasonably well. I am working on another idea to take some lightweight fabric (or sheets) and fill them in strategic spots to provide weight, but I have yet to figure out the logistics.

How do you cope with sensory integration challenges during the summer?

I should have known better. When the note came home that Gus had pushed another student, I should have known that he was having an ‘off’ day. He has never in his life done that (not until the 25 mg of Strattera, but that’s for another day). He was kind of grumpy and snappish from the time he got home; even when we took him bike riding, he wasn’t his usual happy self. Don’t ask what we were thinking when we asked the kids if they wanted to go to their favorite diner for dinner. Yes, say it, that was just dumb.

To make matters worse, my daughter wasn’t having an exactly stellar afternoon - not bad, but getting to her edge. I had Mount St. Helens before my eyes and didn’t see it. I shouldn’t even have to give the details: everything was taking too long, why did we have to wait or the waiter? the order wasn’t what they wanted, the food was terrible…the mountain was ready to erupt.

So how did we escape only slightly charred? For a change, we let go.

Instead of trying to make the kids stay put, we recognized that they needed to get up, but we did it in an orderly way so as to not disturb other diners. My husband took Gus for a stroll first - he was closest to melting down - and then later, after he ate, he took M.

Gus hasn’t been eating normally and was peeved about his meal. “I didn’t ask for grilled chicken!” I know better than to let him just have fries for a meal - I’d pay my penance for that at 3 am when he would wake up ready to party. So he had to eat the chicken. So I doused it with as much ketchup as I could and negotiated eating a piece of chicken with a fry. It worked for a few minutes and I got two whole mouthfuls of my meal. M flatly refused to eat anything - she didn’t like the sauce on the pasta.

We got the check, hubby took M for her walk to pay the bill and I packed up everyone’s meal - we’d eat at home. Usually, we’d just eat as quickly as possible, ignoring stares and scowls; stay until we were ready to beat our heads into a wall; this was the first time we just let go of our own ideas and followed the flow. We need to do that more often.

We got home, and the kids were still in their state. M was furious that she had to eat at least some of her meal because we don’t just waste food. Gus was on sensory overload from his sister’s crying - his best trigger. So, I took him up to his room, with his dinner (with his permission of course) and he ate some more chicken away from the drama. Within a few moments he had settled down. M ate some of her dinner and was allowed to make herself a sandwich.

Not the evening we had in mind, but when I think of all the ways it could have been worse, I’m okay with the outcome.

Edit:  Gus was up at 3:30 anyway, but I’d bet my left arm that it’s the Strattera and not the fries.

 John Byrne cartoon

Co-Morbidities - what a scary word!  It sounds like some sort of mass death sentence.  For the layperson, however, co-morbidities are just multiple conditions that present at the same time.

At the seminar I attended last week, Dr. Ortiz discussed these conditions.  He distinguishes between Asperger’s and High Functioning Autism by IQ scores, but admits that the scores are usually not true representations of intelligence, but very dependent on what kind of day the child is having when tested.  What he also noticed was that the co-morbidities for Asperger’s are a little different than those for Autism.

With Asperger’s the child is more likely to present with conditions like OCD, ADHD or anxiety, to name a few.  With Autism, there is a higher likelihood of conditions like gastro-intestinal disorders or epilepsy. 

My son is borderline for ADHD in addition to his Asperger’s.  In other words, if a score of 70 qualifies him as ADHD on the DSM IV (the diagnostic tool for all these conditions, which is very outdated, but that’s a post for another day) Gus scores a 69.  The interesting thing is that sometimes it’s hard to tell with him what behaviors are caused by what condition.  He’s being medicated for ADHD because he can’t focus and tends to get out of his seat and pick up things from the teacher’s desk.  But that might have nothing to do with Asperger’s OR ADHD.  It might just be the way he learns (kinesthetically)!

Hopefully, the DSM IV will be expanded one of these days to make these conditions a bit more clear cut.  It won’t change the conditions, but it may improve public understanding of how to navigate them appropriately.  Perhaps then, society will be less inclined to just write out a scrip for things that can’t actually be medicated.

It’s Thursday again, so that means it’s time to find three reasons to be thankful about the unique gifts of autism, Asperger’s or anything else that should come to mind!  Here are my three for this week:

1. I am thankful for my son’s special education staff.  It’s been a pretty good year and he’s grown so much.  They are caring, patient (mostly) and really value each child’s strengths.  I haven’t seen eye to eye with them every step of the way this year, but overall, I’m very grateful for their presence in his life.

2. I am thankful that my son won an award yesterday for Excellence in Science and Social Studies.  This tells me that whatever else he tunes out in the world, he is very interested in the way things work, the truth and heart of things whether it be germs or society at large.  He told his teachers he wants to be a scientist, and knowing him, he just might.  He just might.

3. I am thankful that my son’s front tooth finally decided to come out!  Both his front teeth had been loose for a while.  But the way they loosened, the right sort of crossed behind the left and pushed it forward.  It looked like a Rockette out of step with the rest of the kick line.  Well, the right fell out weeks ago, leaving the left poking out all by its lonesome.  It was kind of cute in a goofy way, but it was getting pretty hard to brush without annoying him, and it was making him lisp.  So I’m glad we’ve moved on.

Please, add your gratitude below!  Any volunteers?  Don’t make me come and pick someone…