Photo courtesy of Katie Alicea

It Took 3.5 Years To Get A Proper Diagnosis For My Son's Behavioral Needs

My son was 18 months old when I took him to the pediatrician with concerns of his abnormal behavior. I felt like he was much more difficult than any of the other kids his age, but his intellect was far beyond theirs as well. The doctor told me that he seemed to be just a typical strong-willed, smart, active boy and that all we needed to do was just be more consistent in our discipline if we wanted to see his behavior change. He assured us that our son would eventually “grow out of it”. Even as a baby he was challenging because he had colic, hated sleeping, and couldn’t stay still or quiet. When I heard “he will grow out of it”, my exhausted brain just screamed “WHEN! WHEN will he grow out of it! I need an exact date and time.” This was our first child and neither one of us had any experience with kids prior to this, so we did our best to trust our doctor and follow his advice. But my son's doctor was wrong — and it took time for me to grow into the advocate I needed to be for him, and to get the diagnosis that would finally help us.

At my son's 2-year well-visit, I told the same pediatrician that things were getting more difficult with our son than ever before, even with trying to be more consistent in discipline and routine with him. He asked several questions and with my answers just repeated to me what he had said to me at my previous visit — he was just a typical strong-willed little boy. Tears filled my eyes as I said, “But how can this be typical? It is all so hard. Beyond hard. We don’t get any break at all. He is tearing our house apart. He can’t sleep. He never stops moving or talking. He doesn’t react to discipline or redirection of any kind. He has frequent tantrums and hates loud sounds. I think he is smarter than us! Couldn’t there be something going on with him medically?”

Photo courtesy of Katie Alicea

The doctor looked at me sympathetically and told me to purchase and read the American Academy of Pediatrics handbook to get the latest recommendations on how to discipline our son, so we can get some peace in our home. He told me everyone feels like their kids are outsmarting them at this age. I told him, “I didn’t say he was just outsmarting us. I think he is actually smarter than us.”

He chuckled, handed my son (and me!) a lollipop and sent us on our way.

I left feeling like the worst and most incapable parent in the world. My son was difficult because of me. He was “normal” and I needed to try harder and do better. I needed to just be patient and wait for him to grow out of all of it.

So I read every book or article and watched every talk I could get my hands on which discussed how to discipline children, deal with behavior issues, and what children with advanced intellect act like and need. I tried just about every recommended positive parenting method.

But nothing worked in the long run.

The degree to which he would throw fits and be unable to complete tasks that he knew how to do was extreme. Everything in me felt like this wasn’t typical.

Our son wasn’t just a smart kid, he was advanced in many ways that we felt were unique — and challenging. He knew his alphabet, how to count to 20, spoke clearly, and even knew how to read certain words by the age of 2. His intellect was far beyond his peers even at this young age, but his inability to pay attention and listen to directions made daycare and any formal learning settings difficult. He constantly got in trouble for not being able to sit still and stop talking when he needed to. He was bored because he knew all the answers to what the teachers were teaching and got in trouble for constantly blurting out answers before any of the other kids could have a chance to answer. He was very anxious about being away from me and would have a tantrum at drop off almost every single morning even as he got older. Every day was a battle to get him to get dressed, eat, brush his teeth, and basically do anything I needed him to do. I know this is typical for most young children, but the degree to which he would throw fits and be unable to complete tasks that he knew how to do was extreme. Everything in me felt like this wasn’t typical and so I decided to go to a new pediatrician.

From the ages of 2 to 4, we continued to take him to pediatricians and doctors who dismissed what we were saying. Our son was always so kind and personable around everyone and rarely showed what we were experiencing at home in front of the doctors. He was a charmer without meaning to be because he acted like a little man from a very early age. He started talking, walking, and reading early so he would have conversations with adults like he was a little grown up. People thought it was adorable, and it was, but it also gave this false sense that everything was okay with him and it wasn’t. Only our closest family and friends and his teachers knew how difficult our life was with him and they did their best to support us and encourage us to keep searching for answers for him.

Photo courtesy of Katie Alicea

We were exhausted beyond what we thought possible every day, so I kept pushing our doctors for help. I went to counseling myself and got support to keep on going and be the best I could be for my family. I started to feel like people thought I was a crazy mom who just didn’t know how to get her child under control and wanted to think she had a genius child so she could feel special.

It wasn’t until we had our second son, when our oldest turned 2, that we really started to see just how atypical our oldest was. The older our youngest got the more obvious it became to us that he was more typical in his behavior and intellect than our eldest. After more doctor visits with tears in my eyes being told to give our oldest less sugar, take gluten out of his diet, avoid food dyes, no more dairy, do time-out more frequently, stop doing time outs altogether, do positive parenting, but no too positive, and read this 500-page book about parenting, and then another 500-page book that completely disagrees with that other 500-page parenting book, and my favorite; “Just wait, he’ll grow out of it before you know it!,” I finally demanded that my son be seen by a pediatric behavioral therapist for an evaluation.

It took four months to get an appointment, but it was during the visit with the behavioral therapist when my son was 4, that we finally started to feel understood. She did a thorough evaluation and spent a few hours with me and my son. At the end of the visit she told me with confidence our son had borderline ADHD and may possibly have sensory issues and anxiety as well along with being very advanced educationally for his age. I cried and told her how for years other doctors had told us he was just a typical strong-willed, active, smart boy that would grow out of it and we felt like we were failing him at every turn because we didn’t know how to deal with him and his behavior. She listened sympathetically with knowing nods and said she hears this same story all the time.

Many doctors are reluctant to diagnose children younger than 6 with ADHD because many of the behaviors and symptoms of ADHD are also typical of how toddlers and young children behave, and many of them just aren’t comfortable diagnosing and treating ADHD at all. Lots of kids have trouble sitting and being quiet when they are supposed to. Lots of kids have tantrums when they are overwhelmed. What makes it atypical is the frequency and degree to which these behaviors occur. She said for our son, it was obvious his behavior was much more frequent and extreme, which means he is not like every other kid, which is why she felt comfortable telling us he will most likely be diagnosed with ADHD once he begins school.

She recommended medication and to start in-home parent/child therapy. We decided not to do medication at that time because we wanted to try therapy first to see how it went. We were able to complete three months of therapy and did gain a lot of important parenting strategies that worked better with our son, but moved out of state before we could finish the recommended six months.

The last few months have brought us answers we have waited years to hear.

By the time we moved several states away and our son turned 5, we were feeling like things were getting harder in many ways and not easier. Transition is very difficult for our oldest and the move was very difficult on him and his negative behaviors increased tenfold. We did our best to help him get his bearings, but before we knew it, it was time to start kindergarten. Very shortly after beginning school, his teacher, who has been teaching for as long as I have been alive, noticed his behavior issues and met with us about them along with the school psychologist and guidance counselor. With their help and the help of an amazing pediatrician, the last few months have brought us answers we have waited years to hear.

Our oldest was finally officially diagnosed with combination ADHD (he has impulsiveness and hyperactivity) and tested into the gifted program at his elementary school as well. We always felt his intellect was above average for his age, but to see the high evaluation scores and hear their observations was such a relief. It turns out that it is more difficult to diagnose kids with ADHD when they are gifted. We believe being in the gifted program will help with some of the boredom he felt in the classroom that lead to behavior issues. Finally, he is no longer begging us to let him stay home and not go to school because he hated feeling like he was always in trouble but couldn’t control his actions. He is getting the help he has needed for years and so are we. We have been working closely with his school and doctor in order to take the next right steps for him and feel we are finally getting what we need to help him. His teacher, guidance counselor and school psychologist have all told us how much he has improved at school after starting treatment — and how much happier he is now.

The surprise has been the grief I have felt during this time. I thought having a diagnosis would be a relief — and in many ways it is — but over the years of not really knowing for sure what was going on with our son, I held out hope that maybe he really would grow out of this phase like everyone kept telling us he would. Maybe he really was just really strong-willed and active and one day he would wake up and be a different kid. But now we know that this isn’t a phase and he won’t really grow out of having ADHD even if the symptoms improve and he is better able to learn to control his impulses.

Our boy is truly special and amazing in so many ways. He is a natural leader with a kind heart and wonderful sense of humor. He is fearless and loving.

He has a neurological disorder. He has special needs. He requires more from us and his teachers than our neurotypical youngest son. When we felt like things were harder, it was because they actually were harder. When we felt like his advanced intellect, although amazing, was creating difficulty in school and at home with discipline, we were right.

Photo courtesy of Katie Alicea

This has been our normal and will continue to be and now I am mourning the loss of what I wished and hoped would be and am learning to accept and love what is. Our boy is truly special and amazing in so many ways. He is a natural leader with a kind heart and wonderful sense of humor. He is fearless and loving. He is definitely strong-willed and knows what he wants and believes, but if we help him continue to hone this it will be a real strength for him.

I am glad I listened to my gut all these years and continued to ask for help and go to doctors until someone helped us. No one knows my son better than I do and I knew he needed more help than we could give him and now he is getting it. I know the doctors we have seen over the years have done their best and didn’t purposely dismiss what we were saying. It is difficult to get a true assessment in 15 minutes — especially with a child who is almost always charming and well-behaved in public.

I learned early on that I am the best advocate my children will ever have and that it doesn’t matter if people think I am annoying or crazy for pushing to have my children treated and fairly evaluated. I was right. My son was and is atypical. I pushed and kept pushing until he got the help he needed.

If you are a parent feeling this way, don’t be ashamed or afraid to keep seeking answers until you are satisfied with the answers. Our children need space to grow and learn, but especially when they are young, they need the support and attention of their parents so they can reach their full potential. If you feel you aren’t getting the answers and help you need from your doctor, see another one — or six. If you know in your heart there is something going on with your child that no one can see or understand, don’t give up. Keep seeking for answers until you feel satisfied.