Et tu, Wyatt?

Just another day at the zany house.

First few weeks of school. Izzy has been trying to adjust to an uber-organized, high standards teacher. She had a horrible day yesterday, forgot her homework, yelled at the teacher, kids were trying to help her get back on track, but she felt like they were “bossing” her around.

We made sure everything was ready to go this morning, and I reminded her 17 times not to doodle and to pay attention so she would know what to do and to write her assignments in her planner and that she had to bring her planner, her folder, and her keyboarding paper home each night. Poor child. I didn’t really tell her 17 times. It was more like 17 attempts at delivering this information while she was actually listening.

So tonight when we said the blessing on the food, she said, “Thank you that I finally had one good day in the last two weeks.” I tried not to explode with joy and said, “What happened today? Why was it good?”

She said, “Even though I really wanted to, I kept myself from doodling, and then I heard everything that I was supposed to do, and I wasn’t confused.”

Wow. I wanted to do cartwheels all the way to Australia. Instead I said something textbooky like, “That was some really good self control. I’m glad you had such a good day. Way to go.” Textbooky may sound stilted, but it’s usually better than what would automatically roll off my tongue, so I go with it. I try to be really positive with Izzy.

Any how, triumphant day, and I’m going to roll in it! …Oh ya, for two seconds, because on this very same day I ran into Wyatt’s teacher and she told me that he couldn’t sit still for his reading testing today and that he scored rather low. When I said I knew he couldn’t sit still and mentioned ADHD in the family, she subtly asked if anyone was on medication. That was probably illegal. And then she casually mentioned that some kids just do so well with it…and some kids don’t. I’ve heard that before. Yes, I’ve heard those words before, Oh Wyatt, Wyatt, Wyatt. Et tu, Wyatt?

Do these teachers know that we are screaming inside when they drop these little hints? Do they know we want to just fall on the floor crying? Do they know our heads are splitting and our hearts are breaking? Do they know I want to say, “Okay, no big deal. I think I’ll put my kid on an amphetamine, also known as a psychostimulant, that may stunt his growth and cause sleep problems and can be addictive. What the heck.” You know, I don’t even mean to rip on this teacher. I’m sure that she struggles and frets with these “spirited” children and sees improvements when some of them start meds. I’m sure that she sees some of the challenges alleviated. I’m sure that she sees children who probably need meds and parents who don’t give them meds. I know she has her struggles too.

But for me, she has taken my dreams and thrown them in the river and waved good bye, “Hey, I hope it wasn’t too rough parting with your idyllic thoughts of raising this beautiful boy. Buh bye. Ya, new life paradigm. Get up to speed, Mom.”

What Is PDD-NOS?

HIking at Bryce Canyon. Amazing.

I'm compiling some info for our teacher who hasn't had any autism spectrum kids in her classrooms--or as she said, "any who are diagnosed."

•PDD-NOS (pervasive developmental disorder not otherwise specified) seems to me (and to doctors and anyone else who seems to write or talk about it) to be very similar to Asperger's or high-functioning autism.

•Individuals often have average to above-average intelligence.

•Difficulty with social skills and friendships. This can be the greatest challenge. They may want to make friends very badly, yet do not have a clue as to how to go about it. Identifying 1 or 2 empathetic students who can serve as "buddies" will help the child feel as though the world is a friendlier place.

•Difficulty using and interpreting gestures, judging proximity to others, and maintaining eye contact, all of which may impede the development of personal relationships.

•Because of an intense interest in one or two topics, the individual may talk at people instead of to people, disregarding the listener’s interest or attention. Although individuals may make efforts to socially interact with others, their unusual manner may leave many people not knowing how to respond. The person with Asperger’s syndrome may then be left misunderstood and isolated.

•"Swiss cheese" development. Some things are learned age-appropriately, while other things may lag behind. For example, a child may understand complex mathematics principles, yet not be able to remember to bring their homework home.

•Difficulties with transitions. Needs advance notice if there is going to be a change or disruption in the schedule. Let child know, if possible, when there will be a substitute teacher or a field trip occurring during regular school hours.

•May get overstimulated by loud noises, lights, strong tastes or textures, because of the hightened sensitivity to these things. With lots of other kids, chaos and noise, if needed, help the child find a quiet spot to which he can go for some "solace." May need to fidget or chew things.

•Unstructured times (such as lunch, recess and PE) may prove to be the most difficult for the child. Please try to help provide some guidance, a friend or extra adult help during these more difficult times.

•Allow the child to "move about" as sitting still for long periods of time can be very difficult (even a 5 minute walk with a friend or aide can help a lot).

•Although vocabulary and use of language may seem high, AS children may not know the meaning of what they are saying even though the words sound correct.

•The perspectives of the AS child can be unique and, at times, immovable.

•Can be dysgraphic and unable to listen to you talk, read the board and take notes at the same time.

Goals for the New School Year

Aaaaaaahh! School is starting soon. That was an "aaaaaaahh" of both excitement and dread. Excitement because I wouldn't mind ten seconds to myself, and the kids are excited to see friends and enjoy the fun parts of school. We are all dreading the not-so-fun parts of school. But I have some goals to help us all start out on the right foot.

1. Review IEPs and be on the ball to get accommodations going.
2. Meet with new teachers, school psychologist, special ed. teacher, and principal before school starts.
3. Create "Notes" for the new teachers describing the three most difficult behaviors they may encounter and how to deal with them.
4. Bring a beginning of the year gift/bribe to teachers.
5. Talk to the kids individually about their concerns and how we can make it a great year.

Let's see what I actually get done. I'll report back.

The Beach Bakery. Yummy, um, but not for real.

Tools for Anger Management

Summertime!

Here are some notes from an anger management class that we went to. The kids made some cards and illustrations of their feelings and reminders too. 

Izzy said her mind is like a garbage disposal. It gets all clogged up and full of garbage, and she has to run the disposal to clear it out and think calmly again. Great analogy!

TRUTH—No one can make me angry. I choose.

3 Rules of Anger  Don’t hurt self, don’t hurt others, don’t damage property.

Look at it differently.  Seeing things from other perspectives (remember the guy whose kids were out of control?—his wife had died). Sometimes understanding another point of view is helpful in decreasing negative emotions.

4x4 breathing—deep breathing can help calm the body. Breathe in slowly to the count of 4 and out to the count of 4.

HALT Hungry Angry Lonely and Tired We don’t make good decisions when we are feeling these feeling.

Emotional Brain to Logical Brain—When we are feeling emotional, we can use counting or thinking things to pull us out of our emotional brain and into using the frontal cortex. We can then think through our situation.

REMEMBER anger is a secondary emotion. We FEEL something before we get to anger. It may be frustration, embarrassment, disappointment, intimidation, sadness. When we can put a name to our feelings and realize what situations trigger these feelings, we can help reduce negative results.

1, 2, 3 feelings back  Ask your child what feelings they had that day. Many times children have felt many other feelings, but can not name them or explain what they are feeling. If we help them learn different words to express their emotions, they will be more able to healthily express their emotions.

Actually Doc…

Gets tired in the late afternoon sometimes, but I think switching the timing of Intuniv and starting Vyvanse has helped with that.

Took Luke to the doc for a checkup since he has started Vyvanse (lisdexamfetamine). Notice the amfetamine. My babies are on amfetamines. This all seems soooo counterintuitive.  And even though it does help, it still scares me. Have I said that before? Anyway, I’m happy that our move has taken us back to Doctor Dave, my husband’s brother who is an awesome pediatrician. And it was a classic Luke interchange.

Doc: “So do you think these new pills are helping?”

Luke: “Well, the pills don’t stop my meltdowns, they just give me more power to stop my meltdowns. Like if my brain is a bomb about to go off, the pills let me hack in and give me a couple extra minutes to disarm the bomb.”

Doc: “So you’re doing better with the meltdowns?”

Luke: “Ya. I haven’t had one since the Pinewood Derby.”

Mom (had to clarify a little): “The Pinewood Derby was last night.”

And later:

Doc: “So do you know what the Chill Drill is?”

Luke: “No.”

Doc: “When you feel like you’re going to have a meltdown, you imagine that you’re a penguin standing on ice. Breathe in some cool air, imagine your head cooling down, your feet cooling down. You just chill.”

Luke: “Well actually, that is the exact opposite of what penguins do. They try to maintain body heat and they huddle together to keep warm and hold their eggs on their feet to keep the eggs warm. They even have blubber to help them stay warm.”

The nurse and I looked at each other and tried not to laugh. Doctor Dave, patient as ever, went along with some Antarctic discussion and a new glacier metaphor.

The good news is that Doctor Dave saw a marked change in Luke since our last visit. Dave said the last time we visited, Luke wouldn’t even engage, but this time he talked a lot, and they had a good exchange. Small triumph. Better—I didn’t say perfect—social skills.

So for the record, we’ve changed both Izzy and Luke’s medications again. Nothing huge, but we’ve increased dosages. They’ve gone from 25 mg to 37.5 mg of Zoloft, their anxiety med. I’m giving them a pill and a half, since I’m wary about jumping right up to a double dose. I know they’ve been taking these meds for a few years now, and I know the dosage often increases as they grow and gain weight, but I’m still cautious. Who knows if they’ll take these meds off the market in 20 years and say, “Oops, we just realized that those drugs are causing brain tumors.” That may seem paranoid to some people, but in my mind those kinds of things happen all the time. So the smallest dose that helps is my mantra.

We also increased Luke’s dose of Vyvanse from 5 mg to 10 mg. Still a negligible quantity, but Luke and stimulants can be a scary combination. He just metabolizes the drugs like gasoline on fire. I was worried that he wouldn’t sleep on the 10 mg dose, but he fell in to bed and off to dreamland no problem. I think taking the Intuniv at night, riding his bike to school, and playing baseball are all helping with that. Baseball is another story for another day…

Is Intuniv Causing Weight Gain?

I learned a new word this year, communited:  a fracture in which bone is broken, splintered or crushed into a number of pieces. Observe my lovely clavicle.

This is just one of the many reasons I haven’t blogged for a million years. Moving a few times has something to do with it too.

But this blog is my own personal record of the kids’ medications, doses, timelines, etc., and since we’ve changed Luke’s meds, I’ve got to get it on the record. 

The impetus for me feeling like we should consider changing meds was his weight. He started wrestling this year, and I was surprised when he weighed in at more than most kids his age. In the last half year or so, he has gone from a pretty skinny kid to the 92 percentile on the weight scale for his age. Such a quick gain didn’t seem healthy. I don’t think there’s a significant difference in how much he has stared at screens. He’s always had as much video, computer, and television as I would possibly allow him, but I’m pretty strict. I could only think of two things that could be the cause: school lunch or Intuniv.

Kinda skinny, right?

I’m really not a fan of school lunch. I used to buy it for the kids only once or twice a week. But things have been so hectic, I’ve succumbed to the easiness of an online payment. And I’m still doing it, despite my concerns! Gotta get life under control here and make lunches…

Here we have a mountain man in the 4th grade history play. Not quite as lean, and I don't know why. Could this just be his body changing in prepubescence? (I've always hated that word.) Changes that might go unnoticed by others always have a way of freaking me out because I'm paranoid about having my child take drugs. Yes, they help him, but in the back of my mind, the worried dialogue careers. Wait a minute, I've noticed a change!! Is his body composition changing?! Is he more lethargic?! Is something bad happening to him?! Aaaahhh, save the neurotic mother and the lab-rat child.

I knew that weight gain was a side effect of Intuniv, (not listed on the official Intuniv web site but on other sites), so I decided to talk to our pediatrician about it. I have also felt like Luke has become more and more lethargic and wondered if that was a side effect from Intuniv. It is an antihypertensive (lowers blood pressure) after all.

So our pediatrician suggested we try a stimulant again. I busted out my records and told him that even with the smallest doses of Vyvanse, Focalin, or Daytrana, Luke was completely buzzed and wouldn’t fall asleep. So we talked back and forth trying to decide on a new treatment that might work better. We decided on trying a teeny, tiny dose of Vyvanse in the morning and keeping the Intuniv but at a smaller dose and giving it to him at night before he goes to sleep. Intuniv is supposed to last for 24 hours, so the time you give the dose shouldn’t really matter, but my pediatrician explained that there is an arc to the release of the drug, building up in the system and tapering off. So he told me to just give it a try. You know, experiences with infertility, cancer, and ADHD have taught me that that’s what medicine comes down to anyway—give it a try. I’ve probably mentioned that before.

So Luke is now on 5, yes, 5 mg of Vyvanse a day. The smallest pill available is 20 mg, so I have to open a capsule and divide it into 4 parts. It ends up as barely a breath of white powder in the bottom of a cup. It seems almost ridiculous, but I have read that some people can metabolize medicine so quickly that they can only take small doses. Maybe that’s true for Luke.

We tapered the Intuniv down from 3 mg to 1.5 mg (half a pill) and have been giving it to Luke before he goes to sleep. We also give him a dose of melatonin. He does have a hard time falling asleep if he doesn’t have the Intuniv, so I don’t know that we can completely eliminate it.

I haven’t noticed a ton of difference in his behavior, though his school teacher thinks he is doing better. He has still had some meltdowns at school but fewer. That’s where we are for now.