Tuesday, January 17, 2017

Meds and Executive Function Disorder/ ADHD Our Journey

Disclaimer: I'm writing this post with permission from this child, in hopes that our experience/nightmare may help someone else.
Also, this is NOT intended to diagnose a child you know, this is only a description of our own experiences.

We have a son who is an amazing kid, ok they all are, but I'm going to focus on this one for this post.
He has a heart of gold. He's the kind of kid who has compassion for those who may not fit in, who are being picked on, etc. We have had more than one occasion where someone has thanked me for his goodness because he really helped their child to fit in, or just have a friend. He can talk to any adult any time and is able to put most people at ease. He loves to tell jokes, loves pranks, and is a class clown.
Ever since he was young we have known that he has a head for learning bizarre facts, he loves science and could tell you about most of the solar system by the age of 3. He loves reading and reads novels regularly. A fun part of his personality is that he gets just as excited about someone else's birthday as they do. He is as creative as the day is long. I will never forget looking out in the backyard and seeing the kiddie picnic table turned upside down and he and his brother dressed in makeshift costumes carrying toy rifles. He was standing in front of "the boat" as he was playing George Washington crossing the Delaware. He was often in costumes reenacting some historical event, using his brothers or stuffed animals as characters and could have them pretending for hours.

In spite of all this school has been nothing short of a nightmare.
He's an extremely auditory and visual learner. He could watch a Bill Nye the Science Guy episode once and nearly quote it verbatim, because he was interested in the subject matter, he could hear and see the experiments and he didn't have to write anything down.
Anything involving writing has been horrific. Not just for school. Writing requirements for scouts, church talks, etc. And his handwriting is nearly illegible.
When he reads, he reads for content, not the actual words and he can fill in pretty well with his imagination. So when he reads aloud to his siblings, he often miscues. But in the long run, if it hasn't changed the idea of the story he just blissfully goes on.
By the time he reached the end of 3rd grade, we realized he was falling behind in math. Plus he was also the smallest kid in his class and by that point, the bullying had more than taken its toll on his psyche. It was devastating to live through. So I home schooled him for a year. Worst year ever. I am a former school teacher and I can only say ugh!
No really, it was that bad. We did great with reading and history, in fact we read and discussed amazing novels, learned about early civilization. It was fantastic! Math was a nightmare. I even warned him often during the year that if he didn't get his math assignments done, he would continue working on them through the summer until they were, even if he missed going to the pool, birthday parties, etc.
Guess what? He missed a lot of things that summer, and I felt guilty as heck. Guilty because he was missing stuff and horrible because I couldn't figure out another way to help him.

We put him at a different school the next year, to avoid the stigma of being held back. He had amazing teachers who truly loved him and were kind and understanding. We did everything we could to keep him organized. He had a planner. He carried only a few folders. He was constantly late on assignments, or they were turned in squashed from the bottom of his backpack, or they just weren't turned in because he lost them. However, he learned a lot and loved the year and the next. Then we moved across the country.
We sent him to a charter school that was rigid and advanced. It was an awful experience. He got in trouble for tapping his pencil or his foot. In spite of tutoring all year, he barely made it through in math. He got bullied again and again.
At home, things were getting steadily worse! He was raging inside and often out. He took out his anger and frustration on everyone. Many times I personally did not handle it well. Often his brothers expressed their anger at him for how he treated them. He started retreating into his own world.

Then we started junior high. If you have forgotten those years, it's for the best.

He wound up getting thrown (literally) around. He failed classes. Finally, we decided to have him tested. A few weeks later he was diagnosed with Executive Function Disorder, also known as ADHD.
(I wrote about this in a prior post Executive Function Disorder a.k.a. ADHD)
Now being a former teacher, I was both happy for a diagnosis and stunned because he wasn't like several of my students that had also been diagnosed. He didn't bounce off the walls all the time. He wasn't generally in lala land. He could focus for long periods of time when he wanted to.
Also, I was scared to death of medication. I had many students over the years on Ritalin and didn't see that it actually did anything. It was just a pill they would leave class to take, they'd come back and things were mostly the same. Not going to do that to my child, no way! Also, I'm not big into meds. So, there you are.

We had a diagnosis, talked over plans with his teachers, got color coded folders for his classes and now would sit with him daily after school and find out what he learned in each class, what he had for homework and get it done. Each day was one on one for at least an hour after school. And yet his anger kept building, his grades didn't improve. He was going regularly for tutoring, but nothing.

His science teacher thankfully realized that he aced his pretests for the chapters so she would let him study other things during class. She knew he needed more. He had an engineering class he loved and did great in. He took a video production class and not only learned about filming and editing, but also became a news anchor which helped his self esteem a bit, as people recognized him.

Then he started high school.
It seriously was feeling like the unending nightmare saga. His anger, frustration and rage were at times epic. It was affecting every aspect of our home life and it had for years, just getting progressively worse. I was beginning to wonder who was going to get seriously hurt, and all the while we were helping him with organization, taking him to counseling.

Finally, after realizing we had done all we could, we decided to try medication. I took him to the doctor, who expressed that at his age most kids were starting to wean off. Yep, I felt terrible.

He started the meds the next day. Now I realize that he was wanting them to help as much as we were, so his efforts were probably a bit exaggerated, but the first day this is what happened. He came home from school and started immediately on an assignment he was given that day. Not one single fight about getting off the games and doing his work, he got right to it! There wasn't a feeling of anger seeping out of him.
But what brought me to tears was this. My kids all have daily chores. One of his that day was to empty the dishwasher, but it was still running when he got home so I reminded him as I was going off to get other kids to bed. The next morning as I was getting breakfast ready, I opened the cupboards and there I found cups neatly stacked and in rows. Then I looked in the cupboard that I keep storage bowls in, everything was neatly stacked. This was not the usual. Usually I would open cupboards ready to catch whatever jumped out at me.
This is when the tears started and my breath got caught in my throat.

Did it take medication to help him see order? To be able to focus? To be able to stick to a task?

It seems like it.
Now I'm not saying it is all a bed of roses, but things have changed.
Here is what we have noticed.
First and foremost the anger and rage is much less.
Second, he is getting more done and able to stay on task better.
I don't have to remind him to get things done nearly as often as I did.
He says he can focus better and remember things better.
He is doing better in group settings.
He has reached out to his brothers to play with them and engage with them in a good way.
He has stomach aches sometimes, especially if he hasn't eaten and once got sick after taking it on an empty stomach.
His face gets beet red for a brief time after he takes it.
He has bouts of being really tired and has even taken a few naps.
He hasn't been as hungry as he was, which we are monitoring.

Do I wish I could go back and change the nightmare we have been living all these years and try meds? Yes, but we didn't know this was the problem and we may not have been prescribed this one, which seems to be working, so we may have spent years fruitlessly anyway.
Is this the answer for other kids? I don't know and I wouldn't try to determine it for anyone else. All I can do is share what happened with us.
Also, the meds are outrageously expensive! Not kidding, really expensive. Makes me wonder what happens with other kids who need them and can't afford them.
It is my sincere prayer that sharing this very difficult journey helps someone else. I shared previously about getting his diagnosis.
Like I said, I'm not necessarily advocating for meds. It's a really big decision and what we chose may not be what others would. Right now, it really is helping in all aspects of his life, should that change, we will reevaluate. After trying tutoring, organizational ideas, daily reviews, weekly check ins with teachers, as well as prayers and blessings, we really couldn't see anything else we could do.

Feel free to share if you have any ideas or experiences that have helped your child or one you know.

Or share this post if you know a parent who is beating their head against the wall not knowing where to start and you think this might help. If it helps one other kid, it'll be worth taking the time to write it.

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