My intention of this blog is to write about topics that explore behaviors of kids with bipolar disorder……and behaviors of teenagers in general. However, to understand where I am coming from, I am aware that you first need to get to know us and our journey to this point. My first couple of posts will be stories explaining how we finally got my son’s diagnosis and our fun adventures with the medical community (Yes, Sheldon, that was sarcasm).
In the words of Julie Andrews…….let’s start at the very beginning……a very good place to start.
My son has never been good on timing. He is usually either really fast or really slow. After a very difficult pregnancy, I ended up in the hospital with preeclampsia. My son was born 10 weeks early weighing 2lbs 15oz. After a 7 weeks stay in the NICU, he arrived home on Mother’s day 2000.
The early stages of his life were hard, simply because he had a lot of catching up to do. Being fed with a tube for many weeks damaged his gag reflex, so eating was a challenge. He had issues with noises, which I connected to his weeks in a silent NICU. He rolled over, sat up and walked behind schedule, as was to be expected. The one thing where he was ahead of the game on was talking…..he was a fast talker….and still is.
The first time we noticed something was a little different emotionally was around the age of 3. He was a particular child, liked things a certain way. I really didn’t give it much thought….I mean, he was 3, what 3-year-old doesn’t like things their way? Then, one day, we were at the doctor’s office, he went into the play area and proceeded to have a tantrum because they reorganized it and moved the play kitchen from one side of the area to the other. It was then that his doctor asked me how often tantrums like this happened. When I told her it was on a regular basis, she suggested I keep a journal and track these types of tantrums; she was concerned that he had OCD. I noticed it happening more and more often over the next couple of years. He would get upset if I picked him up from daycare and had to stop at the store or bank on the way home. Dora the Explorer was starting to become popular at that time, so I started a game with him in the fashion of a Dora song that would list the places we needed to go on the way home. He seemed to be ok with that…..unless I went in the wrong order. I had to figure out little ways to make his ‘order’ of things ok and still move along with my daily life.
When he was 5, he and I moved out-of-state. It was expensive to be a single parent where we lived in Connecticut. I moved us to a small town in upstate New York, where I could afford to have a place of my own. This move also meant my mom would be nearby, which proved to be invaluable. I was worried that this would disrupt his routine, but he adapted well……. initially.
When it came time to start kindergarten that fall, I realized how far behind he was developmentally. He loved words, but didn’t even attempt reading. When he would read a book it was from memory, having heard me read them to him many times and connecting parts of the story with the pictures on the page. Writing was an incredible challenge for him. He couldn’t tie his shoes or button his pants. It seemed that anything that had to do with fine motor skills caused him frustration. That was the year that the meltdowns started. He had always had tantrums…..what kid doesn’t, but these violent meltdowns were something else entirely. They didn’t happen at school, always at home, they were always violent, with me being the target…they were a precursor of what was to come.
By the time my son was 7, his meltdowns were happening on a regular basis……at least 4 times a week and they would last for up to 3 hours. They were usually very loud and very violent. I didn’t know what was causing them, but I knew these weren’t normal childhood tantrums. A friend of mine suggested I have his doctor evaluate him to determine a course of action. At that stage, my son was terrified of doctors. When he was 5 he had his routine shots and ended up getting scarlet fever a week later. Although the shot had nothing to do with the illness, he always associated the 2 and has had a needle phobia ever since. He always thought that going to the doctor’s meant getting a shot, and thus would fight every time we went. The day we went for his evaluation was no different. Luckily, I had my mom with me. She has always been able to talk him down out of a panic. He seemed to be fine walking into the waiting room, but once he and I went into the exam room the meltdown started. It was so violent and so severe that the doctor wouldn’t even walk into the room. He sent a nurse in to tell me that she had called ahead to the psychiatric intake at the ER and wanted me to take my son there. The fact that the doctor wouldn’t even walk into the room infuriated me, needless to say, we never went back to that office.
The minute we got into the car to head to the hospital, my son became completely calm. He understood that we were going to the ER and why, but the hospital didn’t seem to scare him as much as the doctor’s office did. I can only attribute this to the fact that I worked at a hospital for years, so it seemed like a ‘safe’ place to him. When we walked into the ER and explained who we were, they seemed confused. In front of them was this happy, smiling child, who was being chatty and sociable with everyone around him, not the crazed, demon child described to them by the pediatrician. After talking to multiple people, the doctor on call gave us the information for a local psychologist and said that he thought my son had Asperger’s syndrome. I had never heard of Asperger’s before. I immediately went home and did an online search. When I came across the term ‘Autism Spectrum’ I was floored. I had met children with autism, I had seen the movie Rain Man, that was not my son. I know now that there are so many different levels of autism on the spectrum, I did not know that then. The only thing I knew was that my son did not fit the image of Autism that was in my head.
We scheduled an appointment to see the psychologist the hospital referred us to. The day we met her, I knew in my heart she was going to help us….and she did…..to a certain degree. She was the one who completed the evaluation we initially went to the pediatrician for. Based on her results, my son fit a lot of criteria for Asperger’s, but was far too social and engaging to actually be diagnosed with that. Her final conclusion was that my son was a jigsaw puzzle. I asked her then if she thought it was bipolar disorder. I knew there was family history and I had done my research on symptoms. She told me that children rarely had bipolar and since my son didn’t have cycles the way bipolar patients normally do, she was positive that wasn’t his diagnosis. I have always known that doctors can’t know everything. They all still have learning to do, but it was this instance that I reflect on that always makes me second guess physicians a bit…..it also makes me trust my mother’s intuition. She did help him in other ways, even if she was not able to figure out his actual diagnosis. She taught him coping skills and helped him with self-confidence. She taught him how to communicate his feelings. He felt safe talking to her about everything and for that I will be eternally grateful. He is now able to articulate his emotions and fears better than most kids his age, regardless of his diagnosis.
After the incident that sent us to the hospital, we needed a new primary doctor and his psychologist suggested a developmental pediatrician that was located in Ithaca, NY. It was a bit of a drive from our small town, but I figured it was worth it if this doctor could help. After reading the psychologist’s reports and having a long interview with me, this doctor determined that my son had ADHD and wanted to start him on medication immediately. The ADHD diagnosis confused me. My son could sit and focus better than most adults…….when it came to things that interested him. Also, I was always wary of meds, so this made me nervous, but I knew the struggle my son was having on a regular basis, I ended up giving the green light and crossed my fingers that this would make both our lives better……..it didn’t.