Relief. I thought I would feel it the moment we received the diagnosis. We have been waiting, wondering for almost a decade. I had prepared myself many times over to hear it. Yet my heart still fell straight in to my stomach when the doctor said the words: You son has ADHD.
I haven’t written much on the personal side in quite awhile. I said I was too busy, immersed myself in work and even pulled back quite a bit from social media (which for me probably means I’m now sharing about as much as the average person). Not necessarily a bad thing but I admit I have been avoiding this conversation. Not because I had any embarrassment or worry about what people would say. We were simply processing it all. And it has been a lot for us to process.
Not your typical child
Our son’s struggles began at a very young age. Even as a toddler, we always knew he wasn’t your typical child. At home, we saw a spirited, happy kid who loved to play and learn. Unlimited energy, incredibly bright and talkative. He would sit for hours working on his “projects”. He loved to colour, play video games and tell jokes. He loved being the funny kid and the attention that came with it. There was never a dull moment in our house, but we never had anything to complain about. He was happy and so were we.
When in social situations such as daycare, school or after-school groups, things were very negative. He was difficult to manage, impulsive and required a lot of 1-on-1 attention. We brought this up with our family doctor on every visit but whenever she saw him, he would sit quietly in her office and play nicely while she spoke with us. “The fact that he can sit here like this with me tells me that it’s not something medical”. However, when he was finishing his grade 1 year, the school begged us to have him properly assessed. I admit we felt offended. If only they could see how he was at home with us. Feeling backed in to a corner, we went back to our family doctor to request a referral. She agreed with us that it was not necessary but sent him for an assessment to please the school.
We met with a pediatrician who was the leading child behavioural specialist in our area and were scheduled to meet once per month for 3 months. We were honest in all our answers to his questions and had the teacher fill out her paperwork as well as provide a letter explaining her experience with him. During one of the appointments, he spent 30 minutes alone with our son to see how he was without us. At the end of the final visit, he said that he was unable to diagnose him with anything medical – and felt that our son was simply a gifted child who was socially immature. “He’ll catch up”, we were told and we were encouraged to put him in to as many social situations as possible to help with that.
The next few years, there was slow but gradual improvement. We were hearing from his teachers less often, he made a few friends and seemed quite happy. Things were far from perfect but I always felt if he was happy, then it couldn’t be that bad.
Then he wasn’t happy anymore
Grade 4 started off fairly well, the best start to a year we had seen yet. There were challenges as always but he seemed to be in a good routine and the issues were smaller than in the past. He had made one really good friend which had really helped with his anxiety about going to school each morning.
Grade 4 seems to be a year however, where the social dynamic changes. Part way through the year, the social hierarchy begins to form. Boys start noticing girls. There is an obvious power struggle. For my “socially-immature” son, he was quite oblivious – until it became clear that the kids were using him for their own amusement.
I wouldn’t necessarily call what these kids were doing “bullying” because he often brought it on himself by his behaviour and reaction to events, however they had definitely learned how to push his buttons and found it quite funny. We went from the odd incident on the playground to daily incidents. They would even escalate to physical confrontations on occasion and almost always led to name calling and cruel nick-names. For our son, this caused a significant loss in self-confidence. He was no longer happy.
His grades began to decline and he was flat out refusing to participate in classroom activities. I was receiving multiple daily phone calls from the school. The mornings became a struggle to get him out the door and after school almost always resulted in tears as he told me about his day. His anxiety was so high, he was struggling to fall asleep at night. He hated school, he hated the other kids and he begged us to do something about it. I was at the end of the rope, I felt we had tried everything and I was physically & mentally exhausted.
One day near the end of May, I received another phone call. The teacher explained that he was refusing to do an open-book test and she thought maybe if I spoke with him, his attitude would turn around (this often worked). When he got on the phone, I could hear the misery in his voice. He was holding back tears as he tried to explain what was going on and I admit that by this point, I was also holding back tears listening to the hurt in his voice. There was an incident on the playground and he was called many names. He couldn’t do the test because he was still so upset about what had happened and was unwilling to let it go. Recess was coming up again soon and he was dreading the idea of going back outside. I got back on the line with the teacher and requested he be permitted to stay indoors for this one recess – unfortunately this was not a possibility due to lack of available supervision.
An hour later, I received an email from the teacher that there had been yet another incident during recess. I replied that I was going to come pick him up and she replied “I think that would be best”.
That was his last day of school.
I contacted the social worker that had been seeing our son for his anxiety and explained our decision to pull him from school and begin homeschooling. The social worker suggested that maybe it was time to have him reassessed. The first assessment was 3 years ago and she felt strongly that he had a lot of the same personality traits as many of her ADHD clients. We agreed and opened our mind yet again to the possibility.
This time, we met with a child psychiatrist who specializes in behaviour issues. He looked over the questionnaires that both my husband and I, and our son’s teacher had filled out. He looked over the past report cards and comments. He spoke with my son. He spoke with me. I felt he was listening and asking really good questions that we had previously not been asked. This time, it felt different. So I wasn’t overly surprised when I was told that he was able to confidently diagnose our son with ADHD.
The interesting thing about this assessment was that when he gave me the diagnosis of ADHD, the doctor explained exactly how he had come to that conclusion. He showed me the scale, explained where my son ranked on it vs. other children. The most surprising part was when he explained how ADHD does not always look the same. I had always been led to believe that ADHD was an incredibly hyper child who could not focus on any one thing for very long. That doesn’t sound like my son at all. The reality is that many ADHD children can focus quite well and be very calm – but usually only when doing things that truly interest them. If they are bored or being asked to do something that they don’t want to do, then the defiant behaviour comes out, often in the form of hyperactivity, but many times as anger or frustration. This really explains why at home, we were seeing a much more focused, well-behaved child while the school was experiencing a completely different kid.
Taking it all in
I really wanted to feel relief with the diagnosis. Having an answer after 10 years should feel great, no? Yet this diagnosis also means that there is something medically wrong with my son and he has been struggling for 10 years. Listening to him speak to the psychiatrist, having to explain his hurt and pain truly broke my heart.
My head is racing as I go through the “what ifs”. What if I had asked for a 2nd opinion all those years ago and he had been properly diagnosed? How would his life be different now? Had I failed my son? I admit that I am still going through a lot of emotions as this is all still very fresh. I’m not sure what the future holds for him. This isn’t something you can cure, you simply learn to manage it, but even that can take a long time. But even if we can learn to manage it, how will this change his life? Will we continue to homeschool or will he be able to once again return to a traditional school environment? Will he finally be able to make friends, will the teasing stop? Or will he now be the kid with ADHD making things worse?
For many with a new diagnosis, there is usually a period where you can go through a lot of trial and error with modification such as diet, therapy or routines to see if it can be managed naturally. While we didn’t have an official diagnosis, we researched the options and we’ve pretty much tried it all! My husband and I discussed it and with things having gotten so bad for him over the last few months, we have agreed that medication is worth trying.
I spoke with the psychiatrist, we discussed the benefits and possible side-effects of each recommended medication and chose the one that we felt was best. It may not be the one that works for him and it may take some time to find the right meds/dosage. Should he return to traditional school, we will of course combine this with an IEP and in-school supports. We will also continue his weekly sessions with the social worker for as long as needed.
He is currently in to his 2nd week on his new medication and the effects are really starting to become visible. He is noticing the change and was even able to explain how he can tell when the medication is wearing off each evening. He describes it like his brain is filling up with extra thoughts, while spinning in circles that go faster and faster. This overwhelming feeling has been his day-to-day for his entire life but he never knew any different.
Unlike the old days where ADHD kids were drugged to the point of becoming “zombies”, the medication and dosages used today are meant to give a much more subtle effect. The goal is not to change him, but to help him focus better so he can be his best self. With better focus, he will have the ability to make smarter decisions, react more appropriately to situations and learn appropriate social behaviour.
I often say that we parents can’t really ever know if we are making the right decisions for our kids. Although I’m not 100% confident in this decision to medicate, so far, we now have hope that there may be a brighter future ahead. His confidence is returning and he’s less anxious. He’s trying new things he would normally decline immediately. He is spending more time outdoors (something he previously dreaded for fear that there would be other children around). While he still speaks with hesitation about the possibility of returning to school, he is feeling the effects of the medication and has expressed that he does see how it will benefit him in the classroom environment. Whether or not he returns this September, I would hope his anxiety about school, and everything else in general really, does lessen. And he’s getting there, it’s just going to take time.