Clouds, May 2010

Clouds, May 2010

Monday, January 13, 2014

keep on trackin'

Years ago I began this blog primarily for two reasons: tracking treatment & tracking toileting. 

(Hmmm... those would have been interesting title explorations, huh? Treatment & Toileting... how about Prescriptions & Potties... or Drugs & Doo-Doo... I think my personal favorite might be Meds & Muck ....
It's probably best that I stuck with awareneXs.)

Anyway, we were working on both... we were beginning the journey to achieve an appropriate treatment plan & also accomplish appropriate self-help skills for H. In our personal life I have stayed on track, but in my published-life I have shared many tangents over the years.

Today was a clear example of how that "x" gene can get in the way, & what things might be like if it was not.

This morning Hayden was particularly agitated without any specific antecedents. He just did not want to listen to me, then he messed up his bed & had it half-stripped after I had cleaned his room, & lastly when I was helping him get dressed he repeatedly kicked me. Eventually I was able to distract & calm him by offering a simple reminder that he could wear his new shoes to school today. Thankfully, for whatever reason, that sort of snapped him out of his bad mood & ultimately he went off to school much calmer & happier.

No idea. Your guess is as good as mine.

When he arrived home we were back at square one. In the larger picture this is not particularly unusual because kids with FX, including Hayden, tend to have a tough time with transitions... even simple daily tasks that they expect... & even when they thrive on routine. It's just the "x" getting in their way.

First he had a meltdown about getting out of the school van, then he had a meltdown about coming inside the house, then he took it out on his little notebook by tearing the pages out, & ultimately the motherload of the day happened upon realizing that his notebook was now empty. Not just any notebook, but his recently-precious little green notebook that he suddenly became fixated on the other day. It is his current obsession, & therefore of vital importance.

During this time I was also trying to figure out how to get him in the bathroom, because if he did not pee soon I would have a much bigger mess than paper shreds to clean up. But reminding a big kid with special needs that his bladder is likely full, will not get through to him while he's fixated on something else. Ain't gonna happen.

What did happen next, was that he finally walked himself over to the bathroom, locked the door, & then closed it behind him.

Hayden: 1 , Mom: 0

After leaving him alone for a short while, I reminded him that when he was ready he can use the toilet (in the interim, I had unlocked the door with a credit card. Thanks for the lesson, Dad). I also reminded him that his food was ready so after he went to the bathroom, he could eat his hot dogs. I usually have hot dogs but this time I also happened to have crescent roll dough, so I made him one of his favorites... "in a blanket".

Luckily for the second time today, I was able to distract Hayden from his behaviors by talking about something else. So as I was finally steering him towards the bathroom I said I would look for a new notebook. This peaked his interest just long enough for him to finish his business.

I knew I might be pushing my luck, but I was also hoping to be able to vacuum up the paper shreds in the living room. I know better than to attempt that in front of him because the noise alone would bring that x-anger out all over again. I was trying to figure out how I could distract him with the hot dogs.

I looked at the time & realized the oven had been off for almost an hour & a half. I knew it would be luke-warm in there, at best, & therefore safe for him to remove the food himself.

Knowing full-well that he would welcome the opportunity to do such an important task by himself, I pretended like I wasn't sure he could. So I said, "I have to go in the other room & vacuum. Are you going to be OK in there by yourself? I'll just be a couple of minutes."

He already had his step stool in front of the oven (which he totally does not need), & was standing proudly with a pot holder in one hand & an oven mitt on the other. He raised one of his padded paws in the air & said, "I'll be fine, Mom!"

It was the first time in I-don't-know-how-long that I was actually able to vacuum without Hayden having a near nervous breakdown. We live in a small, ranch style home so I had a clear view of him the entire time. He was so excited to take the pan out of the oven & put it on the stove, that he started from the beginning several times-- just the pot holder & oven door part of the sequence. And in between sets he was happily scrunching (this is what we say when he clasps his hands together in excitement).

The only almost-mistake was when he was taking the pan out for the second (or third) time, & he was so proud he turned to narrate for me so therefore he was not watching what he was doing. He accidentally bumped the pan into the stove instead of placing it on it, but thankfully it was a light enough tap that nothing fell & he remained footed on his step stool.

I thought it was pretty responsible of him that he kept his hands protected when transferring the little piggies from the pan to a plate. But I corrected him by prompting him to use the small spatula instead, & then I cleaned off the now slightly greasy & crumby ovenwear.

The timing was perfect when he went to sit & eat because I had just finished vacuuming. Before I explain what happened next, let me offer a brief summary of where we stand with his treatment plan.

This school year started out much tougher than previous years, but usually the beginning on the year is like a honeymoon phase for H. We needed to determine if his ADHD meds are ready to be increased, or, if the addition of something for anxiety would help. The abridged version of why this came to be, is that this year there are a lot of new faces at the school due to staffing changes... & on top of that, there were unexpected changes with his transportation. 

We have known that the two trademark symptoms of fragile x that are most commonly treated with medication, are ADHD & anxiety.

So the first Rx we tried to help with his anxiety was in liquid form, had a bitter taste, & we were getting no where with it. We went for another appointment & the script was switched to a tablet. On the morning of November 19th I successfully added the crushed meds to Hayden's #1 most reliable meal of the day: breakfast.

Trust me, I did a careful taste test first because I was not about to compromise his most important & most successful meal!

During school while this additional medication was in his system, initially his Aide reported that he was slightly agitated. I explained this medicine was something his system needed to get used to. Our hope was to achieve consistent enough dosing to determine whether or not it would even help.

This continued for about two weeks or so, during which time the teacher & therapists reported that H was antsy, agitated, loud, uncooperative, & restless... not to mention experiencing occasional loose stools. Then on a Wednesday during the first week of December, Hayden apparently headbutted his Aide & later slapped her in the face when she was sitting was next to him trying to keep him calm.

I knew she was OK, although of course I felt awful (for both of them, really) & also from the standpoint of a mom who is constantly worried about peer acceptance... it truly broke my heart that this occurred in the Gen Ed classroom among fellow 2nd graders.

By December 10th, the doctor said to stop the anxiety meds. After that his school days were somewhat improved overall until Winter Recess began on the 20th. There were isolated reports of some yelling at the other kids, but he wasn't having the same level of difficulty as they witnessed before.

At the same time that the doctor instructed us to stop the other medication, she was writing a script for something else to try. We were told to wait a week in between.

I probably waited slightly longer than that, partly because the new medicine was not something I could sneak into his reliable morning meal. This would have to be creatively administered at night time, because it could cause drowsiness. After breakfast, the remainder of the day is not exactly consistent for Hayden in terms of his diet. I eventually tried making applesauce after dinner, but I made sure not to offer it to him... he would be entirely too suspicious. So I just left it accessible.

He ended up eating it & this worked for maybe a week but eventually Hayden was no longer in the mood for his nightly applesauce (I knew that would happen sooner or later).

But before the interruption in the applesauce, we were already getting reports of screaming & yelling at school. They also reported irritability & lack of appetite. After two days of not being able to get him to eat his applesauce anyway, I finally heard back from the doctor who said that we should stop anxiety meds #2.


We have another follow-up this week.

So, I just wanted to put this into perspective because I feel like the poor kid has been put through the ringer. I HATE putting all of these meds in his little body & I HATE that we have to keep doing this until we can help him.

I hate it.

So back to this afternoon...
There was Hayden finally sitting calmly & quietly eating his hot dogs. Granted sometimes H's bad behaviors are a result of hunger, but today it was clear-- from beginning to end-- this was something in his brain he was having trouble controlling. Therefore when he politely reminded me about the notebook, my guilt over the past couple of weeks convinced me to go hunting for a replacement. Obviously I was limited to whatever we had in the house, & all I could find was a blank journal. I knew he wanted something more mini (similar to what they use on Blues Clues), but he was actually happy because it's a hard cover journal so it looks like an important little book.

He stood up from the table & voluntarily gave me a hug. I do not need to spell-out how much these moments mean to me.

Yet when evening set in, & his behaviors fluctuated at least twice more before we could even get through our usual cleanup > bath > bedtime routine, once again my heart started aching. I do not mind having an atypical parenting track & if anything my unique perspective only helps me appreciate the sweetness inside Hayden even more...


I know is it would be really wonderful if, at 8 1/2 years old, we were only concerned with tracking things like height & homework instead.


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