‘The doctor said he was one of the most extreme cases of ADHD she had ever seen.’: Mom shares then and now of son’s journey with ADHD

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“On Facebook three years ago, I wrote an article for my friends and family to understand more about my oldest son and his struggles with ADHD. This last week I was asked to share my story, and I couldn’t be happier to do so. I am very passionate about spreading awareness and advocating for my son. There are so many misconceptions about ADHD, and there is a list of things that are only known to those of us who deal with it. Sharing our story will hopefully open up the minds of so many and help those who live with it realize they are not alone. Here is our story from 2019, as well as an update on what I have learned in this journey over the last three years.

Our Journey, Three Years Ago

I know you have likely heard of ADHD, but do you REALLY know what it means? There are two major classifications of ADHD: the type and severity. There are 3 types: ADHD-inattentive, ADHD-hyperactive, and ADHD-combination. There are also 3 levels of severity: mild, moderate, and severe. Our son has been diagnosed (by multiple experts) as having ADHD-combined, severe. At a recent neuropsych evaluation he went through (which consisted of 2 days worth of tests that took place at different times of day), we were told by the doctor who administered the test that after 30 years in the field, he was one of the most extreme cases of ADHD she had ever seen.

He rated in the 98th percentile for both aggression and hyperactivity and the 94th percentile for inattentiveness. In addition to this, his ADHD has caused depression and anxiety, which both rated in the 93rd percentile. Think about THAT.

ADHD is so much more than being hyper. It affects his whole life. His brain moves 1000 times a minute. He is so inundated with thoughts at every second some sounds, lights, and new stimuli cause his brain to shut down, and he reverts to violent outbursts he literally cannot control. He can’t fall asleep at night because his brain runs nonstop, which causes him to be anxious and scared about everything. Sometimes he wakes up in the middle of the night because of a sound he heard, and it takes him 2 to 3 hours to fall back asleep.

He gets hyperfocused on a task and cannot stop until it is completed. But, because he moves at 1000 times a minute, he is brilliant. In the same neuropsych report from September, his IQ came in at the 94th percentile. It would have been higher, but he wasn’t able to focus long enough on certain tasks. He is amazing, but he will have a lifelong struggle many will not understand.

boy with cookbook in hands smiling
Courtesy of Kirsten Shoell

I have been struggling lately as I log in to Facebook and watch all of the posts from friends and family about their fun day. I struggle because I keep thinking ‘What would it be like to be able to take my kids out and not worry about whether or not it will trigger a sensory meltdown?’ I have been angry lately as I log in to Facebook and watch friends post pictures of parties they did with their kids and see many other kids invited but mine never is. I have been angry at myself for letting it bother me. For once, I would like to be allowed the respect and opportunity to have my son invited to a party and be the one to decide if he can handle it or not.

I know he is difficult, but he can also be the sweetest boy ever. When I feel sick, he waits on me and stays by my side until I feel better. He CAN be the most well-behaved kid you have ever seen. He is so friendly and loves everyone, without judgment. I understand he is difficult, but it is not his fault. He deserves friendship as much as anyone else.

I saw a good friend post a picture of her son after his sleepover. They were both classmates of my son. I have no ill will toward them; I know my son can’t have sleepovers right now because of his medication and bedtime needs. But I was still sad he couldn’t experience this fun adventure as a 5-year-old boy. My heart hurts every day, as I see how much good he can do, yet he struggles to even be alone with his brother.

Something is aggravating the chemicals in his brain, and I will find out what it is so he can learn how to be in control of himself. PLEASE teach your children about inclusion. Just because a child acts strange, hyper, or anxious, it doesn’t mean you have to exclude them. Ten minutes of love and attention can mean the world to someone. He doesn’t know he is different yet. He doesn’t quite understand his brain is wired differently. Please pray for us as we try to find a solution to this lifelong struggle of our beautiful, intelligent, fun-loving, and kind son. Please pray for us to have the patience he needs from us.

Learning and Growing

Looking back on this post was very eye-opening for me. So much has happened since then, and I am happy to report although many of the struggles that were there 3 years ago are still here, our ability to deal with them has improved. We still are learning, but we are taking this on with all we have and doing our best. There has been a lot of trial and error: with medication, with therapy, with school. When he was 4 years old, he spent 8 days in the hospital while the doctors figured out how to stabilize his mood and keep him safe.

In first grade, my son had medical leave from school for a month to attend a behavioral program 5 days a week, 8 hours per day. It was during this time he also ended up in the hospital for a second time and stayed there for a week. In second grade, he was eventually moved to a self-contained classroom for the sake of everyone’s safety. He finished second grade in that classroom, and while he was there, he was assigned a behavior tech who worked with him every day on skills he needed to learn—handling anxiety, calming methods, and listening skills.

He is now finished with third grade, and I am proud of his progress. He was fully integrated back into the classroom months ago. He has used the skills he learned to help others, including his younger brother (who has ADHD as well as Autism). He has made many friends in school. He is able to complete work at school and doesn’t need to bring home any homework. He has been invited to parties.

He is a great example to other kids that it is possible to improve yourself no matter how badly the cards are stacked against you. He is a kind soul who loves to include everyone. He is funny, he is intelligent, and he is amazing. He still has a lot to learn, and he still has a hard time, but he is doing well. He has learned how to make goals—right now he loves to cook and enjoys learning all about it.

Three years ago, he wouldn’t touch a book for any reason. Now, he reads every night before going to sleep. Three years ago, he wasn’t able to focus on any sport for long enough to learn it. Now, he plays soccer every day during recess and wants to keep going with it. Three years ago, I did not enjoy being a mother. I woke up every day afraid of how to take care of him, not knowing how to help him. Now, I love being a mom. I have fun with my kids, I enjoy my kids, and I can’t wait to see them grow up and continue learning.

boy with metal
Courtesy of Kirsten Shoell

Lessons We’ve Learned

We have received an abundance of support from friends, family, and the school. There are many things I have learned on this journey, and I want to share some of them with you.

1. Early intervention. This is a very important step in achieving success in navigating a life with ADHD. It is crucial to understand as early as possible what your child needs, and a proper diagnosis goes a long way. Procrastinating help can be detrimental to a child’s ability to learn and live.

2. Trust Your Instincts. As a parent, you have an instinct that tells you when something is unusual or different. TRUST YOURSELF. When you trust yourself to help your child, you will find the help you need.

3. Find A Support System. Many people in this situation, however, do NOT have that support system. If you can’t find support from your close circle, find it somewhere else.

Find support in your community: many organizations are around to help with mental health. Find support online—social media sites have plenty of support groups. Find a school that will support you and your child.

A support system is key to having continued success.

4. Be An Advocate. Never stop fighting for your child. They have the right to happiness, friendship, education, adventure, and everything else a neurotypical child does.

5. Be Knowledgeable. Every case of ADHD is different.

Medication vs no medication. Good medication and bad medication. Therapy or no therapy. Knowledge is everything.

6. Be Kind. The biggest part of being kind is listening. No flippancy: ‘boys will be boys,’ ‘children have lots of energy,’ etc. These comments can cause harmful thoughts and actions for those of us in this situation.

If you remember anything, it should be this: THERE IS HOPE. If my son, who is on the extreme side of ADHD can learn to navigate his life, then anyone can. If you have not found support anywhere else, you will find it here.

Thank you to everyone who has ever helped us—my friends, the school, and my family. You are the reason he is doing so well. You are the reason I have not given up yet. From the bottom of my heart, thank you!”

boy in blue shirt sitting next to a sign that says born to be brave
Courtesy of Kirsten Shoell

This story was submitted to Love What Matters by Kirsten Shoell of Utah. You can reach her at adhdasdmom@gmail.com. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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