Our Journey with a Sensational Child

Child’s View

LessonsLearnedWe started our son on a small amount of Ritalin before and after the Concerta as the doctor recommended, and I may have seen a little improvement in the first day or two.  But then he asked me, even though I’d explained before, why he needed to take more medicine.  I told him again, that we’d seen he was getting to be so sad before and after the medication recently, and perhaps we could make the transition a little easier for his body with a smaller dosage here and there.  He thought about it and said, “I’m not sad.”  We talked about it a bit more and I decided that he is really in tune with his body and the way he feels, and ended up giving him a choice, whether to make this attempt to avoid the sad emotions more, or to stay with the situation he’d had for the last couple of months. He said he wanted to stick with the previous plan, and we agreed that we’d keep an eye on it and discuss it if either of us feel he needed a change.

I fully expected to see more sadness, more crying, and to have to show him in the moment why it would be best to extend the medication hours, but that’s not what happened.  Things went back to the way they were, and he was fine (read: standard ADHD behavior without the super-high emotions) before and after the Concerta effective time.

I gave it some thought and realized that I keep looking at him through this ADHD lens, and didn’t notice that other stresses were at work on him.  We’d been having discussions of home and school moves that I’m sure have been weighing heavily on him.  SuperE helped me look at things differently, and not just assume that medication dosage was the problem.  I really need to stay in tune with all of those factors as we go through this journey.  Of course, I know that the medication has to be tweaked as his body changes, but perhaps a bit more of a broad view of things should be taken.

Another day, another lesson.

Thank you, SuperE – I will continue to work hard to give you the best upbringing that I can.

 

Medication Update

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Wow, I didn’t realize how long it’d been since I posted something here.  I supposed that’s a testament to how well things are going on the medication, and probably also to how busy I’ve been.

We started with the Ritalin and things got a bit better, and we ended up increasing the dosage slowly, getting better results each time. His teachers noted that he was doing much better, but could also recognize when the dosage was starting to wear off near the time the next one was due.  We had a little difficulty with the school’s administration of the medication as well, with them forgetting to give him his meds (not for long, ha!) and being bothered by the container I was providing the refills in (what’s wrong with a Ziploc with his name on it?)  SuperE the whole time looked forward to his pill, and asked questions when the appearance would change.  He continued to be able to focus much better at school, and didn’t bounce off walls during the day like he used to. His school work immediately improved.

At one point his doctor and I decided that we’d try Concerta, the time released version of the same medication so we wouldn’t have to depend on the school for his consistent medication, thereby avoiding their impact to his medication as well – and it was less effective during the school day.  We needed to increase the dosage, and then a few weeks later I was hearing that things were sliding back to the old sort of behavior, and had to increase again.  I was getting a bit concerned about the dosage increases, when my doctor told me that he is still on a low dosage, and we had to start off low and creep up to find the appropriate dosage for him.  Also, since he’s growing, the appropriate dosage may continue to change, so we’ll need to stay on top of it constantly.

For a while, everything was going swimmingly. He took his meds every morning, did well at school, and even did well at restaurants which was something that we were able to add back to our family life successfully after he started the medication.

But recently, my little boy started becoming much more emotional, as he’d be coming off the medication.  He’d cry over every little thing, like that he didn’t like what we were having for dinner, that he had to ask twice for more milk, that it was too late to read a second bedtime story, that his favorite stuffed animal was on a different level of the house.  The doctor said he’s reacting, unconsciously, to the change in the way his brain is working, and it’s unsettling.  She suggested a little dose before and after the Concerta, which I believe we’ll try.  Also, since it’s almost summer, I’m looking forward to reducing his dosage since he won’t need to concentrate on school work during that time.  I’m hoping that won’t lead to more of the sensory issues I’ve seen him have while coming off the medicine or before it takes effect, like not wanting to wear socks because of the seam, or feeling itchy all over, or not being able to get comfortable in a seat.

We will see what comes next.

Starting on ADHD Meds

We had a consultation with our pediatrician and though she’d read the reports from the teachers and our surveys, she still seemed reluctant to go down the medication path. She heard that there was pressure from the school and that’s where she was hanging her hat, until I told her of the caffeine experiment.  She noted that it was very telling, as it pointed out how our son’s system reacted to a stimulant.  She was also interested to hear of my family’s history (siblings and their children) with ADHD/hyperactivity and she agreed that it would be good to see what impact medication would have.

We’re starting on a low dose of Ritalin, the fast acting, quickly metabolized type, to see if there are any adverse reactions and to ease into it.  The idea was to start on Saturday, see how it worked for a couple of days, then start at school.  The school is ready to administer the noon dose, though they want us to put a watch with the alarm set on our Kindergartener.  Somehow I was thinking that the school administrators would be more responsible for this than leaving it up to the child.  I suppose they have a lot to deal with beyond just my son.

SuperE has been looking forward to taking his pill.  He’d ask, “How many days until Saturday?”  It could have to do with the fact that the doctor said that some Hershey’s syrup would be a good chaser for the bitter pill, but he also noted, “I’ve never had a pill before.”  He’s always liked new experiences, except when it’s a food that isn’t sweet.

Yesterday we started with the medication and immediately we saw a difference. I can’t say it was an entirely positive difference like caffeine was.  SuperE had become more persistent, obstinate, and less… dare I say it, easily distracted.  I hadn’t considered what it would mean if he was more able to focus.  It meant that he’d remain focused on what was on his mind or in front of him in other ways, and it turns out that the items on his mind had to do with NOT wanting to do visual therapy exercises, and wanting to have our attention to play tag and hide-and-seek.   I also wonder if his activity level was actually higher.  I had the impression that it was, along with his propensity to make noises for noise’s sake.  Though, it’s hard to say, as I’m sure my objectivity was inversely proportionate to the level of stress created in our household by the change.  I’m pretty sure that the rebound behavior was worse than the before-medication behavior.

When I asked him how he felt with this new experiment with the pill, he said, “Good.”  When I pressed for more detail, what felt good, how, etc., he said that his whole body felt better.  It was hard to get more than that, but I absolutely believe that he’s telling the truth.  He feels better, but isn’t able to really put it into words.  I’m hoping this become more clear to all of us, over a short period of time.  I never claimed to be patient.

I look forward to seeing how his time at school is impacted by this.

No Panacea

The caffeine wasn’t a panacea, but its results were promising.  We heard positive comments from his teacher during the three days that SuperE enjoyed our new experiment, and he reported that he felt better those days as well.  He didn’t like that he had to go potty more, but he thought it was worth it. One day the teacher reported that there was one hour that was like he was on a “caffeine high”, around 10am, but the rest of the day he was relatively well-behaved.

I’ll take it.

We didn’t tell the school of this experiment so we could remove any thought in our minds that they may be biased. The final day of that week we went without any coffee, and the report I got from the teacher was opposite from the reports we’d gotten on the coffee days: He had one reasonably good hour.

An important point in my mind is how SuperE himself felt about the experiment.  He told me all of the following about the difference between coffee days and non-coffee days:

  • He feels better on coffee days
  • Other kids like him more on coffee days
  • The teacher likes him more on coffee days
  • He can focus on class work more on coffee days
  • He finishes more of his work on coffee days
  • He has to go potty more on coffee days
  • It’s worth it to drink coffee instead of not drinking coffee

Almost all of that is positive.   Things are looking promising.

The next step is to start the evaluation process.  I have completed assembling the ADHD package, including the parents’ parts, the teacher’s parts, the report from the Visual Processing center, the report from the Gifted Center, and the letter from his school, and put them in the envelope to drop off at the doctor’s office.  I also made copies of all that just in case we need them, and wrote an email to the doctor to ask what happens next.   Now, we wait… but hopefully not too long.

Successful Experiment

I had already concluded that if SuperE were diagnosed with ADHD, I’d try out medication, lower doses at first, to see if it would have any recognizable impact.  With the letter from the principal noting that “medication may need to be considered if it is to remain at this school”, after a long list of behaviors that don’t belong in the classroom, with frequencies measured in minutes or times that he WAS on task through the day, it was clear that a formal evaluation was needed.  The key point they made, besides that he’d been disrupting class tremendously, to the point that it was not sustainable if others were to need to learn too, was that he was unable to attend to the material, to focus enough to learn.  That’s a big deal when you’re a kid and your job is to learn.

When I brought this up a week ago to the pediatrician, she said the behavior she’d heard about could be due to the excitement of a new year, little boy restlessness, or my favorite: exuberance. She didn’t think an evaluation was needed at this point… maybe later.  Well, later came within a week of that conversation with the letter from the principal.

I’ve been reading a lot about the treatment of ADHD, and the answer appears to always be medication.  Sure there are other things one could try, but they are typically done alongside the medication.  We’ve been trying many things, including at least 4 extra breaks per day to help him work out the wigglyfidgets, but we haven’t seen any results.

So today I decided to try an experiment.  Part medicine, part home remedy, a cup of coffee has been said to contain a little more stimulant (caffeine) than a low dose of Ritalin, a leading drug for the treatment of ADHD.  I figured that SuperE could drink some coffee and we’d do a blind test from the school’s perspective.  If they told me that his behavior was much better, then I’d believe that the caffeine had a positive impact.  The best compliment that he’d gotten before was that he “had a pretty good morning.”

As I didn’t pick him up from school, I don’t know the extent of the positive feelings, but the quotes I heard were “best day ever”, “stayed on task”, “wow”, “answered questions right away” and “wasn’t moving around all day.”  When I asked my son how his day was, he said, “Awesome!”  He said, “My teacher was so surprised. I just sat there and didn’t get up. She gave me a big happy face.  And Megan gave me a kiss on the cheek.”  He had a good day.

At the same time, I was picking up forms from the doctor’s office to complete to start the ADHD evaluation process.  I wonder if caffeine, in liquid or pill form, is one of the medications that they prescribe for ADHD, or if he’d become immune to its effects and need to change later.  In any case, I’m glad that this approach looks so promising because I think that means that there is hope for reducing the negative behavior and letting the little guy shine.  I’m looking forward to what the next week brings.

SuperE Weighs In

On our way to a new sensory playground dedication, I decided to find out how SuperE feels about his situation.  I said, “You are a very active kid.”  “Yes.”  “Are you the most active kid in your class?”  “Yes.”  “What do you think about that? Do you like that?”  “No, because I don’t have any friends.  I need friends that are as active as I am.”  “Yes, you do.”  So, I started going through a list of kids/friends that I know and asking him how active they are.  “Is Mikey your most active friend?  Who’s your second most active friend?”  He concluded that he has 4 active friends.

Then, at the sensory playground, I mentioned to several of the staff that they should provide a play dating service to match sensory seekers with each other.  They all seemed to think it was a good idea, but it was one of those things that I think won’t get any follow up.

SuperE’s insight into his friendship status was amazing and sad. At the end of that conversation, I asked the question that I hadn’t intended to ask, because he was being so up front and honest, and I really did want to know his opinion.  “If there were something you could do to be less active, to be at the same level of activity as your classmates, would you do it?”  “Yes.”

Why is this so heartbreaking?  Why does it pain me to think of medicating my son?  Maybe because it’s admitting that he’s not good enough the way he is.  I love him the way he is… and I don’t like that he’s being rejected by society, or at least by organized education.

Signing off for now.  I need to read the letter that the principal sent home.  I’m sure I’ll have more to write about after that.  Wish me luck.

The Call

Nearly two weeks after we decided to try the shotgun approach to see if SuperE would react positively (meaning being able to focus longer, being able to sit in his chair longer, not lying on the floor, and not disrupting class), I received a call from the principal.  SuperE has been in this school for two years and the principal had never called me before.  She seemed flustered, upset, and I figured my son must have caused some horrible disturbance, convinced some other kid to perform a dangerous stunt , or landed on another child, or otherwise caused bodily harm to another. I was sure she was going to end the conversation with something like ,”and we can’t have that sort of behavior in this school. He’ll need to go.”

She started off by saying that as they attempted to tally the incidents of class disruption, they were challenged because they needed to record number of minutes versus number of incidents. They’d originally thought that 3-5 incidents a day would be the result, but when the redirections were ineffective or would last only a few minutes, the number of incidents was getting to be so great that they just started counting minutes.  One time this week he sat across two desks kicking a chair for 7 minutes, with a few ineffective redirections. That was over half the time that the principal was observing the class.

Yesterday he was so wild and hyperactive that he accidentally hit another kid with something (somehow the item in question didn’t register during the conversation) and SuperE immediately tried to comfort the other child, and kept saying, “I didn’t mean to do that!” He was very upset. The principal concluded that he is aware of the problem, and that he’s sometimes shocked at some of the impacts he has, but he can’t help it.  She said, as if I were at fault for this situation, or for not fixing it, that she feels so sorry for him. He is starting to behave like an outcast, he’s unable to concentrate on the school material, and every day is so hard for him because of this inattention.

Yep, I felt horrible.

She said that we are going to need to get him evaluated for ADHD and that she’s sure they’ll recommend medication.

I wish it were as clear-cut as the administrators make it sound.  It seems that they want him medicated and that will fix everything.  Not so, or at least that is not guaranteed.  I’ve read that allergies can have some of the same symptoms as ADHD.  I’ve read that kids with SPD, especially the sensory seeking variety, tend to present in a similar way to ADHD kids.  And I’ve read that it can take several attempts to find the right medication, if that route is taken.  I’ve also read that though there are many alternatives, those should be used with medication and not instead of it.

Last week I talked with SuperE’s pediatrician who said that it’s too early to have him evaluated for ADHD. She said he had a bad day, and that all those attempts to get things under control were worth a try.  I asked the principal to write up their experiences and findings so I could take it to our pediatrician to have the next conversation. And while I’m there, I’m going to ask about allergies too… why not?

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