ADHD and My Child: the battle with healthcare

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My youngest son is the equivalent to the Tasmanian Devil at times, and I don’t mean the actual animal that lives in the bush, I mean that little cartoon guy that just spun everywhere and caused destruction in his path. It has been a challenge dealing with his lack of control at times, but there is only so much control he has. At the age of 5 he was diagnosed with ADHD, and it’s severe. As an early childhood educator I knew something was off developmentally a few years earlier but ADHD and ADD are not typically diagnosed until school age. All we knew was that he was struggling, a lot, in preschool due to his inability to keep his hands to himself, his lack of self control, outbursts both positive and negative, and the Tasmanian devil that seems to have inhabited his body.

After conducting research on my end, talking to his teacher and other professionals in the field, we came to the conclusion that he should be evaluated for ADHD. Luckily for us, his pediatrician also turned out to be the leading expert on ADHD in the area. That gave us extra peace of mind as we went through this process. After meeting with the doctor privately and conducting evaluations with our son we decided we would try medication. Deciding to use medication was not a snap decision. We had heard horror stories about children turned into zombies and the last thing we wanted was for him to lose was his spark. When he is not in tailspin mode destroying all in site he is an intelligent, funny and entertaining kid.

He wanted his hair to look like Sonic the Hedgehog this summer!

My son loves Michael Jackson and Bon Jovi. He was so obsessed with the Broadway Musical Newsies that the age of 3 he was the main character, Jack Kelly for Halloween. He’s creative and silly but he also has no impulse control, yells his favorite phrase “Booty-Butt” without warning at the top of his lungs, and used to greet people by hitting them in the crotch. Not forcefully, but enough to hurt, particularly if you were a man. We knew he couldn’t continue on this path and be successful. This wasn’t just your typical case of a child gone wild. I am a career expert in Early Childhood, his father has an undergraduate degree in Psychology. We knew what we should be doing to help him and nothing seemed to work.

The first medication we tried him on cost a whopping $60 a month after insurance. $60 a month for something my child needed to function. We saw results but he was still struggling. Especially as the evening wore on and the medication wore off. He became next to impossible to corral into anything productive. He started therapy with a psychologist and we were hoping to see major results. Unfortunately they seemed slow to come. On the upside he was getting much better reports from school and I was more confident about him starting kindergarten in the fall. At home he still wreaked havoc, knocked things over, ran around and caused general frustration for everyone.

Yes we tried discipline, time outs, meaningful chats, loss of privileges, positive re-direction. If it was in an expert handbook, we tried it. Nothing seemed to work for him. The only plan that has seemed to work is ignoring the negative behavior and over the top praise the positive choices. I have been reading the book Transforming the Difficult Child by Howard Glasser and his advice seems to be the first and only thing outside of medication that has had a positive effect on my son. And I love that feels built up by praise. I want to cheer him on and praise him and give him confidence, but there are only so many times I can hear “Booty-Butt” screamed at the top of his lungs while he claps his hands loudly. These aren’t discipline issue, these are impulse control issues. His brain is simply wired differently.

Amidst Cornoavirus shut-downs, he turned 6. We went in for his physical and I asked if there was something new we could try. After talking to me and performing the evaluation the doctor offered a new option. He said it was taken twice a day, was more potent and should have a more lasting effect. I was ecstatic. I went to get the prescription filled and they wanted $365. I’m sorry, for one month? On insurance?! That was simply not sustainable but my child potentially needed this to thrive. After frantic searching I found a manufacturer’s coupon that cut it down to $185 a month. The upside, it seems to be working wonders for him. I am seeing a more calm and engaged child. I am better able to hold conversations with him, and I see him able to focus for longer periods. In addition, it is not suppressing his appetite the way the first one was. These are all wins. The downside is I have to pay almost $200 a month for a medication, for a mainstream mental health disorder in order to help my child succeed and function they way a typical 6 year old should.

What does this say to you about America’s health care policies? Put simply, they are garbage. My son’s father is a doctor, he works for a major corporation, he should have top notch insurance, yet this is what he is offered. A plan that doesn’t even cover medications aimed at treating a common mental health disorder. It angers me and disgusts me. We are fortunate that while it’s not easy, we can afford to pay this amount each month to help our child, but what about all the people who can’t? Without insurance this same medication was over $600! As a mom and an educator I am calling out the U.S. Healthcare system and pharmaceutical companies. How dare you make billions each year and rake us over the coals for our basic needs. How do you expect America’s children to thrive and meet their potential when many don’t have access to their medication needs? It is an absolute travesty that in what is supposed to be the country of Freedom and Liberty the average American child does not have access nor can afford basic health care costs.

Daughter to Disability; my one of a kind Dad

Photo by Lukas on Pexels.com

My dad was always my number one fan and believed I could accomplish anything and everything. The best piece of advice he gave me was to try. I did not have to be the world’s best ballet dancer or the kid who scored the most goals on the soccer team, but if I was interested in something, I should try. If I hated it or failed, no big deal, I could stop, but only once the initial commitment came to a natural end. I didn’t have to be the best, i just had to try my best.

By encouraging me to carry on and follow through on a commitment, I learned the value of perseverance and honor. Staying true to your word is a valuable trait I hold onto to this day. It also means saying no when you know you can’t follow through. Saying yes to everything because you don’t want to let people down is a slippery slope to go down.

Germany, Summer 1996

I have many fond memories of my dad as a child, playing Wiffle ball in the backyard, being thrown in the air in the pool, and him allowing me and my sisters to style his hair with barrettes until he looked fabulous according to under ten selves. My dad was a loving but firm dad. He gave support, guidance, love, but we also knew when we crossed the line and would be subjected to a good old fashioned “dad talk.”

My dad was an FBI agent, which made him one of the coolest dads to have among my friends. I remember the sense of pride I felt when he would be a chaperone on a field trip come in for career day. I looked up to my dad in a way, and I imagine most young girls do. I was never a popular kid, geeky, awkward, and little chunky, but when my dad was around, I felt like the most popular kid in school.

Two of my favorite memories of my dad are related to those “serious” topics of drugs and dating. I remember he was sitting at our giant desktop computer in the living area, and I was in the kitchen microwaving something, and on the T.V., a commercial about talking to your kids about drugs came on. My dad looked up from the computer and said, “Do you do drugs?” I was roughly thirteen or fourteen at the time, I said, “No.” and he replied “Ok, good.” and that was that. The second was that he used to tell my older sister that he used his FBI skills to track any guy she dated. I was pretty sure this was false at the time, but I remember thinking, “Yikes!”

My dad had an excellent sense of humor and loved to pull our legs, as the expression goes. In the summer of ’92, we took a family vacation to Washington, D.C., and among the famous sites, he arranged a private tour of FBI headquarters for us. Little did I know that 15 years later, I would be living in D.C. and working two blocks from these same headquarters. During the tour, we were taken down to a basement level and told that this is where the Xfiles were kept!! It wasn’t until several years later that I realized there were indeed no Xfiles…. at least that we know of 😉

2008

My dad loved Indiana Jones, MacGyver, Crime dramas, Andrew Llyod Webber musicals, playing his guitar, and supporting his three girls in all our adventures, whether sports, musical theater, or learning a new instrument. He built us a treehouse and a lemonade stand. We went to Phillies games and out on daddy-daughter dates.

Circa 1983

In my early teens, my dad was diagnosed with Progressive Supranuclear Palsy, a condition being made more mainstream recognizable by the new T.V. show, Zoey’s Extraordinary Playlist. PSP is a condition that slowly creates the loss of your motor skills. It affects one’s ability to eat and swallow food, speak, walk, and perform essential functions for yourself. Over the next two decades, my dad held on much longer than any medical expert predicted. He carried on through bouts of pneumonia, a broken hip and pelvis, seizures, and depression. He received the diagnosis in his 40’s, much younger than people are typically affected. But even through this massive change in his and my family’s life, he continued to take joy in life and to be his children’s number one fan.

2012

I cannot even begin to imagine what it must have been like for him to go through this process, to experience the loss of the use of your body, nor would I try. But despite the adversity, my family and my dad had to overcome; I can say I was lucky to have the dad I did.

Happy Father’s Day to all the incredible men out there that make a difference in a child’s life, your presence matters.

To learn more about PSP please click here.