Sunday, August 30, 2015

Our ADHD journey

I've been tossing around the idea of writing this post for over a year now and finally decided to type it out, mainly for my memory and to show the progress Bennett has made. 

It all started when Bennett was about 18 months old.  He was a very high-spirited baby, making others laugh and always getting the attention of strangers.  He could get anyone to look at him from across a restaurant.  Around age 2 we would get comments from his teachers about how he had misbehaved or had to go to time-out.  We didn't think much about it because, I mean really, he was 2!

He would always get in trouble at church, birthday parties, school, and basically wherever we went.  We literally could not walk away from him at an event with other children for fear that he would put his hands on, punch or tackle other kids.  No one ever really gets in trouble at church either!  We moved to a pre-school and the notes, calls, texts, and emails started coming nearly everyday about needing to change his behavior.  They would say "he cannot keep his hand off other kids or he does not listen."  We knew all these things, but again, he was 2 years old.  Neil and I weren't too stressed about it.

We moved him to First Baptist for K-3 and K-4.  Early in K-3, his teacher sent us notes, emails, phone calls, and texts about his behavior. Friends would have to get on to him at parties and such. It was just so sad, because at this point we were wondering if he could help it or not.  We knew that he was the smartest 3 year old we'd ever seen (because that's what all parents think about their babies), but we could not figure out why he didn't cooperate! I left the school conferences and carpool several times in tears.  One day I walked Bennett to class and left, but I forgot my keys so I had to go back...I heard a mom say "well, here comes trouble!"  I cried all the way to school and when I got there.  I just wanted to say "he is soooo sweet, has the best heart, and the best kid I know...how dare you!"
We tried literally everything we could think of to help him.  I met with the pediatrician about what to do and she gave me several ideas that we tried.

Here is a short list of things we tried to make it all better:
  • sticker charts
  • behavior charts
  • daily chart from the teacher
  • fish oil vitamins to help develop neuro-transmitters
  • took out red-dye (Bennett loved strawberry milk, but we read somewhere that red dye could be a problem)  No more strawberry milk.
  • time-out
  • spankings
  • positive reinforcement (sent a new toy to school that he could earn at the end of the week)
  • Orange Leaf after dinner for a good day.  We would basically throw a party!
  • We even made Bennett go to Henry's school for 3 days to the "baby school." :(
  • Essential Oils in the roller bottle on the back of his neck and bottoms of his feet (made him smell like a hippie)

After none of this stuff worked we went back to the pediatrician and she suggested medicine.  NO WAY! I am not putting a 3 year old on medicine!  Are you kidding me?  So, we had the teachers and I fill out Vanderbilt forms.  These forms can tell a variety of things from ADHD to depression, to oppositional defiance.  After all the forms were back in it was clear to the dr. that he had ADHD.  We were firm in our decision to not put him on meds.

A few months later we were at the surgery center having Henry's tubes put in his ears.  Dr. Pou randomly started talking about kids who snore.  By this time Bennett was 4 and we were still having the same issues at school. We were open to any and all suggestions.  So, Dr. Pou started saying that lots of people think it's funny and cute when kids snore, but it really is a serious issue.  He said most kids are labeled ADHD when they really have sleep apnea.  Ah Ha!  This is our answer!  We told him about Bennett, because he snored so loudly...we thought it was so cute.  Little did we know.  He said we should bring him in to be evaluated.  We made an appointment and Dr. Pou confirmed that his tonsils were huge.  We told him all the school issues and he said his tonsils needed to come out.  We made the appointment for Spring Break.  We just knew this surgery would solve all our his issues.  It didn't.  We went back to school for the last month and a half and just tried really hard.  We knew that Bennett was so smart, but we were starting to realize that he couldn't really help his behavior.

We started off in K-4 with a sweet teacher who was known for being really good for rambunctious boys.  We were excited!  She was always very good to tell me about Bennett, but didn't complain about him EVERY SINGLE DAY, which is what I was used to.  It was such a nice change.  Once he was comfortable he started getting in trouble in music, PE, circle time, and PEP.  One day the music teacher gave him a huge compliment "Bennett, you are just growing up and doing so well in class!"  I was elated and in tears when his teacher told me that.  We just never got to hear about how wonderful we knew he was...I guess the teachers just noticed the wild man we had.  I am guilty of the same thing back when I was a teacher, so I can't really blame them.  I found that teacher at the carnival and told her how proud Bennett was (and us) that she said that in from of the class.  It was so sweet!

His behavior didn't really get better no matter what we tried.  We even met with the school counselor...I always left these in tears.  I called Neil's aunt who is a psychiatrist.  She told me to look into having him evaluated by a child psychiatrist.  I immediately looked into it and got him an appointment.  Too bad it took 3 months to get an appointment.  The doctor talked to Neil and me and then really just watched Bennett play for an hour.  She went over the Vanderbilt forms, but wasn't convinced that it was ADHD or just normal, 4 year old behavior. She suggested we try the Vanderbilt forms again. We did and they all said the same thing...ADHD.  We went back in for our follow-up and the psychiatrist was still on the fence about ADHD.

While being evaluated, we heard about neuro feedback.  This was basically the end of our rope.  I talked to the counselor about it, he evaluated Bennett, and suggested we try this.  Not really sure what it did, but after 20 sessions we saw no difference.  I'd pick Bennett up, take him to therapy, and embarrassingly, fall asleep in their waiting room.  I was newly pregnant with SK and had taught all day back then. He would go in and either play a video game or watch a movie with all these cords hooked up to his head and ears.  As I'm typing this, I am just realizing how dumb it was.  The screen would get snowy if he stopped paying attention to the game or movie.  Still saw no difference. We were just willing to try anything, but meds.

We kept getting lots of comments about his behavior at school and church.  Even the teacher at PEP said "he was just awful today" to me one day after school. I was ticked that she said that in front of him and other parents.  I was sad for my son, who I KNOW wanted to do the right thing, but just couldn't find the control or the focus to do it.  I am not making excuses for him, but it was becoming apparent that he was constantly getting in trouble for things he couldn't help.

Neil was working in Tulsa Monday-Friday by this time and I would have to call him with the school reports.  He said "I think we are really going to have to do something."  So, I made an appointment for the next time Neil was in town on a week day and he took him to see the pediatrician.  I sent him with a list of 20 typed questions because I had to work and couldn't attend the appointment.  She suggested we try a medicine that he can stop taking anytime.  She suggested 2ml a day to start.  You never want anything to be "wrong" with your child, even if it is this minor, but we knew we had to make the decision to try it.  It was after many evaluations, research, book reading, crying (from all of us), and sticker charts that we decided to do it.

We noticed a difference within the first 45 minutes.  Bennett could suddenly listen to us.  He could focus on a task and complete it. He wasn't constantly putting his hands on everyone and bouncing off the walls.  Wow! The real test was going to be school.  Since we started the medicine on a Friday, we had a couple days to get him used to it.  We told his teacher that we started medicine just in case she noticed any side effects.  We had teachers who didn't know about the medicine come up to us to tell us what a night/day difference they saw in him.  People at church were coming up to us saying "wow, he is so grown up!"  We would just say "yes, we are so proud!"  I have a friend who told me she was totally against us putting him on meds until she saw the total transformation on his behavior.

A few months after we started his medicine I saw a mom who I had talked to a couple years before about him.  She has a son who is 5-6 years older and is on medicine.  I told her that we finally bit the bullet and put him on something.  I told her that he is just a different kid.  He still has his sweet heart, awesome personality and wit, but without all the unfocused energy.  I told her that we have As in conduct daily, numerous compliments, and just all around good behavior.  I said "I think people think I am bragging when I shout from the roof-tops how great he is doing, but I'm not...I am just SO PROUD and overjoyed, because these were days that we had never known." She totally understood what I was talking about and said she felt the same way about her boy.  It was so nice to have the affirmation from someone who understood what I was talking about.

One thing that Neil and I say to each other ALL THE TIME... Anyone who questions why we have our child on medicine should come over to our house at 6:30am.  Bennett wakes up in a conversation, is doing cannon balls on the bed, bouncing off the walls, and is ready to tackle the world. He cannot even focus when we say "please go get dressed." We literally have to remind him 16 times before he gets his medicine around 7:15am.  Our Bennett is such a light and has the sweetest heart, he just needs a tiny bit of help to re-distribute his energy.

FAQs (yes, we get asked questions)

  • Are you going to keep him on the medicine during the summer?
    • Yes, we just don't think it is fair to him to take away all the successes he has while on it.
  • Do you wish you would have put him on the medicine sooner?
    • Yes and no.  Yes, because he needed it so badly and is so successful. No, because we feel that we literally tried everything to help him before turning to medicine.
  • Do you think he will be on medicine forever?
    • The pediatrician said he will probably need to be on it until puberty.


I realize that Bennett might read this post one day.  The only thing I'd like for you to take away from this is that WE LOVE YOU so much that we were willing to try anything to give you the world.  We wanted to do everything to give you the very best and to help you succeed.  We are so proud of you, Bennett!  You are a true sweet heart, thoughtful in every way, and a light in this world.

3 comments:

  1. I can't imagine how hard this journey has been for you as a mom but I'm so happy to hear Bennett is doing well. You are a wonderful mom and he is an awesome little boy!

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  2. He is a sweet, perfect boy! Love that all of his wonderful qualities are shining through!

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  3. I have tears in my eyes. You are both amazing parents and did everything you could (and still are) for that sweet boy. Sharing your story will be an inspiration to others and there's no doubt that y'all love that little guy more than anything!

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Thank you for the comments! They make me happy!

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