My Autism Insights

Gus saw the specialist today and it was his last day on Strattera. Yay. I should feel happier, but the whole encounter was a mite stressful (and if you don’t believe me, just ask the waitress who watched me binge eat my way back to sanity this evening). Let me just say that under no circumstances should a doctor make a conclusion about a child patient who has been sitting in a waiting room for an hour and a half, after sitting in a car for an hour and a half, after being in school for the entire morning. Heck, I needed medication after that!

The kids were off the charts by the time the doctor came in to talk with us. They were fussing so loudly that sitting three feet apart, the doctor and I could not hear each other. He got annoyed at one point because he seemed to think that I was insisting on trying Focalin; I was insisting that Gus stay off meds at least for the summer. Clearly, that was not the right answer either, although he did eventually say, “Whatever you want.”

Apparently, actively listening to patients is not one of the things they test to obtain a doctor’s license. Yelling at patients who disagree seems to be an ingrained skill, however.

He suggested that we consider Abilify. He doesn’t want to go the stimulant route because weight loss is a big issue. But my son is not psychotic, so I am having trouble reconciling the idea of putting him on an anti-psychotic drug. To use the vernacular: WTF?

I really wanted to crawl under a rock by the time we left the office. The children were fairly calm once we left the office. M fell asleep almost immediately (after maliciously dumping water on Gus - they were not feeling warm fuzzies toward each other) and Gus chilled out listening to the Beatles on the way home. We went to a diner and said they could have whatever they wanted (non-dairy diet be damned).

All is calm now and the little cherubs are asleep. More importantly, the little cherubs are both drug-free, at least for now.

I lost track of the days again, so my Thursday post is a day late.  Sorry!  Anyway, here’s what I’m thankful for this week:

1. I am thankful that Gus is seeing the doctor on Monday and we can take him off this medication.  It usually takes a long time to get in to see this specialist, so we got pretty lucky.  If I never hear the word Strattera again it will be too soon.

2. I am thankful that I was able to get both kids registered for swim classes!  Gus loves the water and it has such a calming effect on him.  And we’re trying lessons late in the day so that he can relax a bit after school before heading out again.  He was pretty excited to be starting, and I’m sure his sister is going to have a wonderful time, too.

3. I am thankful that we got the same bus driver for the summer that we had last year.  I read over at Autismvox about a driver who got ‘lost’ with a nine-year-old autistic boy.  You just never know about people, so the fact that we have a very trustworthy driver this summer takes a huge load off my mind!

Please comment with your thankfulness below, and I’ll try to pay better attention to the calender next week!  Oh, and Happy Independence Day!

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.

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.

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.

Gus has been on Strattera for about a month now, at three different dosages, currently 25 mg per day.  The first two levels made him a bit quieter, more subdued, and wore off around dinner time when he would start bouncing off the walls, I guess to make up for lost time.  His appetite had decreased a little and his sleep has been erratic.  All weekend, he was waking up at about 4:45 am.  At bedtime, instead of dropping off immediately like he typically does, he’s been getting out of bed several times, or a few times, he’s woken up in the middle of the night looking for a drink.

Yesterday, he fell asleep at school for about ten minutes and didn’t eat his snack or his dessert at school - watermelon, which he loves.  He wasn’t too hyper in the afternoon, but about normal.

So here’s what I continue to ask myself.  What is the point?  The complaint was that he wasn’t able to focus at school.  From what I’ve seen over the weekends is that he’s quiet and sleepy (oh, and complained of a headache briefly) for much of the day, but does that equate to ‘focused?’  I’m actually finding him less responsive that when he’s not on the medication, but maybe I’m just biased. 

I’m trying to give this thing a chance.  I want him to feel successful at school.  But if this is life on Strattera, I can’t see it lasting too much longer.

The past few days have been insane, so I didn’t get to my Thursday Thankfulness.  Here it is, and Happy Father’s Day as well!

1. I am thankful that my son is such a good eater with very few sensory issues with food.  Especially now that he’s on Strattera, which is suppressing his appetite, it’s great that he likes so many different foods.  Especially those veggies!

2. I am thankful that Gus is good at and enjoys yoga.  I think I may start teaching him again over the summer.

3. I am thankful for Gus’s love of camping and the outdoors.  We’re heading off for a camping trip soon and it will be wonderful to see him in his element.  He’ll get to swim and hike, getting some very much needed physical activity and fun after a long hard school year.

Please, add your thankfulness in a comment!

My son has very sensitive hearing.  When he was in Early Intervention, his Occupational Therapist tried AIT or Auditory Integration Therapy with him to prevent some of his meltdowns.  Auditory Integration Therapy is a method that uses music modulated to remove different frequencies at random throughout a half hour CD.   That was a particularly rough year - one of the students screamed often and that happens to be one of Gus’s worst triggers.  I don’t know that the AIT normalized his hearing or if he simply adjusted over time, but he tolerates much more than he used to.

Lately, it seems that his sensitivity is increasing again.  For the past couple of months he has been covering his ears again, and last week was shouting at people (his teacher included) because they were talking. 

One thing that has helped him has been to play soft music for him.  When he’s tired and having a meltdown at home, we let him go to his room and he’ll put on his favorite Cd’s.  His teacher has mentioned using the headphones with some success - music can help him focus in addition to keeping him calm.  I’ve offered to send in a few of his Cd’s from home.  I’m pretty optimistic that they will help to make these last few weeks of regular school more pleasant.

My son typically does not play with other children.  He may play if there are one or two, one being his sister.  More than that, and he tends to head in the other direction.  But yesterday at a birthday party, he was squished into a small sandbox with his sister, three other kids and a huge dump truck.  And he stayed there!  Playing!  This is big news!

 I don’t know if it’s the Strattera (it’s been less than a week) or if he’s just more comfortable after two years of being around the same children.  But it was lovely to watch even if it did only last for twenty minutes.

He’s also showing less fear of dogs, which is wonderful!  He used to have terrible panic attacks if a dog came within fifty feet.  This weekend he petted a rather bouncy puppy and didn’t run away.  Are we getting a dog?  Not likely, but it’s still progress.

Small victories should be celebrated and I do get tired of angsting over school and medication.  Sometimes it’s just nice to bask in the good, even if the good is in the form of a crowded sandbox.