Our ADHD Journey Thus Far

­Last week, I was talking to a friend who had suspicions that one of her children has ADHD. She was overwhelmed and didn’t even know what the first step to take was. My heart was bursting with empathy because, well, I have been in her shoes.

I found myself wanting to pour out every bit of information that we have learned in the past two years. The good, the bad, what has worked, what hasn’t, and all the resources we’ve come across. As I began to share, I realized that we have actually learned quite a bit on our short ADHD journey thus far!

For me, one of the most helpful things was (and still is) hearing from others on a similar journey. This is my heart for this post: not to come at you as an expert or with a to-do list, but to come humbly, authentically, and with an open-heart. My hope is that our story would make you feel less alone and leave you with hope and encouragement. While I will also share the practical steps we have taken thus far, I fully recognize that this is our story, not yours. Do with it what you want.

I will say it again, we are by no means experts on the topic. I welcome questions but encourage you to take specific ones to your doctor. I would hate to misdirect you! Like most parents out there, we are doing our best with the information we have, so please be kind and respectful with your comments.

Our Story

TWO YEARS AGO. As I sat in the bleachers of my preschooler’s athletic event, I could feel my heart just sinking in despair. *Jordan (name has been changed) was struggling out there and I felt helpless as I watched. Our child was distracted, noncompliant, and simply not interested in being part of the team. The coaches were getting frustrated and I could see that Jordan was getting more and more flustered. I remember the heartbreaking moment when my child was reprimanded for not following directions and he/she simply gave up. Jordan fled the field towards me with tears in his/her eyes and asked to go home. As we gathered up the barely used gear, I fought back a lump in my throat wondering, “What is wrong with my child?”

This wasn’t the first time Jordan had struggled in this way. In fact, since around three years old, he/she has been a very challenging kiddo. My husband and I excused the behavior as simply being a “squirrely kid” but we soon began to notice a clear difference between Jordan and his/her peers.

Our home life was struggling as well. The amount of energy and attention it required to parent this little one was more than we seemed to have. Especially when it was required in the middle of the night! Each day felt like survival mode. Our patience was thin and relationships were suffering. When we started to see behavior problems filter into school and other settings, we were simply at a loss and found ourselves making a lot of apologies and excuses for the behavior to the people around us.

Looking back now, I don’t know why I didn’t see the signs of ADHD. In retrospect, I think my husband and I carried the weight of the misbehavior, thinking it was a result of something we were doing wrong. We read books on discipline, tried clamping down harder on bad behavior, talked to parents one step ahead of us, and tried countless different behavioral techniques. Nothing seemed to quiet the storm.

To an outsider who is aware of ADHD symptoms, I’m sure it was easy to see what was going on. In fact, it was my sister, who had recently fostered a child with ADHD who pointed out the similarities and nudged us to get another perspective. I didn’t love this conversation. In fact, I was sent spinning, feeling defensive, and hurt that she would think something was wrong with our child. The fits, the impulsive behavior, the defiance, and the fast pace we ran as a family simply to keep up with Jordan had become a norm to us; and we simply could not see from an objective point of view. It took guts on her part to have that conversation but, looking back, I realize that was a turning point for us.  I’m so thankful she loved us enough to risk having that uncomfortable conversation.

The First Step

It began with a call to the pediatrician to express the concerns we were seeing. This call was hard. I felt as though I was tattling or admitting that our child had simply gotten the best of us. I was imagining there would be push back from them and to be told that these behaviors were developmental. Thankfully, this wasn’t at all the case. In fact, they quickly got us a referral to both an occupational therapist and a referral into a center that diagnoses behavioral disorders. Some of the behaviors I was describing (lots of squeezing people and yelling out randomly) could have been symptoms of a sensory disorder of some type. An OT specializes in this stuff, so that is why we were directed there in addition to the development center.

We were able to get into the OT quickly and worked with a wonderful occupational therapist. Long story short, she recognized a high need for sensory input but we both agreed that this didn’t really seem to be the source of the behavior problems. She did give us a few tips and tricks to help in the moment, but it didn’t feel like we were getting to the root of the problem.

While we were told that it could take months and months to get into the development center, we must have hit it just right because we got in within a few weeks. 

The Diagnosis

The morning of the appointment felt very strange.  We knew this was big for us but we couldn’t really give Jordan much info on why we were going to see a specialist. I felt the tension of wanting to go in and figure things out but also not wanting to go because I knew this might be life-altering.

After a brief wait we were taken to a small room with a few toys. The doctor came in and began to get acquainted with Jordan. Over the next hour and a half, she played “games” with Jordan. I filled out some evaluations and paperwork, and we talked through what we have been seeing over the past year or so. I don’t quite remember what I was sharing about but at some point the doctor looked at me, full of empathy, and said, “This must be exhausting for you.” I don’t know what it was about that statement that stripped away my resistance but the tears started to flow.  All I could muster out was a, “Yes. It’s been exhausting.” She kindly let me collect myself and continued to let us process our experience a bit more.

As we wrapped up, she gently told me what I already knew in my gut. She was giving our child a moderate ADHD diagnosis.

She began to walk through resources available but, to be honest, I don’t remember much of that part of the conversation. I was just trying to digest the new truth that would be part of my child’s story for the rest of their life. Jordan has ADHD.

Mixed Emotions

The diagnosis brought out a lot of mixed emotions, to say the least. First and foremost, I was overwhelmed. What was the next step? Do we medicate? What do we need to change in our parenting to help?  What will school look like? Who do we need to let know? What books do I need to read to learn more? Who can I talk to that has walked this road?

So while I was completely overwhelmed with this new information, there was a strange sense of relief. It was relieving to now have a reason as to why parenting has been so hard. I had always felt like something was inwardly wrong with me for not loving these little years as much as the people around me seemed to. I seriously thought I was missing something.

It was also a relief to know that my child’s behavior wasn’t a result of bad parenting. We by no means have it figured out, but it took some of the pressure off to know that these issues weren’t a result of something we were doing or not doing.

This sounds strange, but it was also a relief to know that there actually was something wrong. We now have some tracks to run on. Before this, I felt like we were just chasing one bad behavior down after the other. Now, we have a root problem to address and can enlist the help of others to help. 

Lastly, it’s a relief to give grace.

Jordan’s brain is wired to keep that body moving. Jordan’s brain doesn’t produce an adequate level of dopamine which explains the need to seek out stimulation in any way it can find it. Movement. Tapping. Squeezing. Screaming. Noises. Even defiance. The brain’s number one goal is to get energy. At this point in our child’s life, that need overlooks what is “appropriate,” leading him/her to act without thinking.

It’s a relief to know that most of the time, Jordan isn’t doing all of these things as a sign of disrespect to us. We don’t need to take it personally. Yes, it still needs to be addressed and corrected, but I have found that I have more patience because I am no longer taking it as a personal attack on my authority. It’s been a relief to loosen up a bit, give extra time for a task to be completed, and to not clamp down as hard.

Moving Forward

For about a year, we took one day at a time, read books on the topic, tried natural remedies, worked closely with teachers, and found great babysitters and kept them close. Despite our best efforts, things continued to be just so hard. The challenging behaviors seemed only to increase and evolve and we felt pretty ill-equipped on what we should be doing. It felt like were given the diagnosis and sent out the door to figure it out on our own.

I also found myself questioning, “Did they get it right? Are we sure Jordan has ADHD? Is it too young to diagnose this? Is this just an excuse for the bad behavior?”  The only place I found that I could take questions to was a Facebook group but even there it’s a bit of a blind leading the blind situation.

When some new, concerning behaviors began showing up, I realized we needed more help. Per the suggestion of a fellow ADHD mom, we got an appointment with an ADHD specialist. After our first meeting with the doctor, we quickly knew we were in the right place. He was extremely thorough and we could tell he really knew and understood ADHD kids. He blatantly told us that our child didn’t need therapy, WE did.

This might come as a surprise but we’ve learned that parents of ADHD kids need to be coached and taught how their kids’ brains work. Even if we were to do meds, if the core building blocks aren’t in place and we don’t understand how an ADHD brain functions, meds won’t be nearly as effective. Per the advice of our new doctor, we tried some fresh parenting techniques and different approaches to the big fits we were dealing with. We gained insight into how an ADHD child’s nutritional needs are different and coaching on how to talk to teachers/educators. He was also just a great sounding board to what we were dealing with. He equipped us with the big picture approach as well as very tangible, practical ideas for the day-to-day. It was enlightening (and a relief!) to know he had a “cautiously positive” view of medication. In other words, he definitely believes children with ADHD and other mental diagnoses can benefit from medication, but such medication needs to be prescribed with great caution, care, and follow-up.

We truly saw the benefits of his cautious approach to stimulants when we got the results of our kiddo’s qEEG brain scan. A qEEG brain map enables doctors to see the unique patterns of mental strengths and weaknesses. It reveals areas of the brain where there is too little or too much activity, and areas that are not coordinating their activity the best they could. The qEEG was optional but highly recommended before starting any kind of medication. It basically gave us a weather map of his brain. The scan indeed confirmed moderate ADHD but also picked up something unexpected: a moderate mood disorder. If we were to have put our child on a down the pipe stimulant, it would have helped the ADHD but would have revved up the mood disorder to a higher degree. Yikes! Getting the qEEG was one of the best decisions we have made in this whole process and has really given us insight into what is going on in that little brain.

I can’t speak highly enough about searching high and low for someone who specializes in this. It has been a game changer. An expensive game changer but worth every penny.

A Few Last Thoughts 

Like almost every parent, we are truly doing our best to make the wisest decisions for our child and our family as a whole.  We still have so much to learn, and we know that we have unique challenges coming with each new stage. I’m sure in 5 years I’ll have much more wisdom to share, but my hope is that God can really use what we’ve learned so far in other families’ lives.

I also hope this encourages parents to do their homework. If you have any sort of suspicion that your kiddo has ADHD (or any other mental disorder) don’t ignore that intuition. Ask family members or other adults in your child’s life if they see the same thing. Talk to your pediatrician. Research the topic. Don’t cut corners. If we had done that that with Jordan (which I’ll admit, it was VERY tempting on the hard days) it could have made things worse. I know it’s not always easy, or cheap, to find a specialist like this, but it’s worth it to start looking.

Finally, I also want to boldly say that there is no shame in having a child with ADHD. It truly is a medical condition (and even has some great strengths! I found this lighthearted video to be encouraging!). Just like a peanut allergy is of no fault to the parent or child, neither is ADHD. The “symptoms” are often misinterpreted by outsiders which is why it is important to remind yourself of this truth.

Further Reading

I would love to share all of the things God has taught me and particular truths I cling to on the hard days. However, those are deserving an entire post of their own. Until then, I’ll point you to some previous posts that might be an encouragement to you:

• Calm. Fair. Firm.
• 9 Truths to Believe When My Child is Suffering
• I’m Not the Mom I Thought I’d Be
• A Word to the Struggling New Mom

Another tangible takeaway is to have printable verse cards all around my home. I put them on my car dashboard, in front of my sink, in my purse, or really anywhere I know I’ll be. They give me perspective and remind me of God’s truth and promises throughout the day.

Truths for Trials: 25 Bible Verse Cards for Difficult Times

On the Job Meditations: 25 Bible Verse Cards for Moms

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