When Alexander was born, we had no hints of there being anything different about him compared with other kids. He was in fact a "good" and somewhat "easy" baby, and I just loved every minute of being a new mom. By the time he was 15 months, he pretty much stopped sleeping. I spent a year driving around with him in the car seat, hoping it would put him to sleep, but usually, as soon as I stopped the car he'd wake up, and we'd cry together. At this time he also started banging his head against the crib, and we couldn't understand why. Then one day, we found blood on his pillow. His ear-drum had ruptured in the night, and I thought we finally "knew" what was going on. He had ear tubes put in, and we were all ready for him to be "normal". That never happened. He developed nasty ear infections in one of his ears, and green goop was constantly coming out of his ear. I remember having to hold him so his "bad" ear faced away from me, because it smelled so bad. After many courses of antibiotics he got sick enough to be treated by an infectious disease doctor, and ended up in the hospital with a central line to try to kill this bug for good. After surgery, and replacing what was found to be a contaminated ear tube, I was once again ready for the "normal kid".
At this point he was 3 years old, and could only speak a few words. I, naturally, blamed his speech problems on the hellish year filled with infections and medications, and expected him to "catch up" any time. In stead he still didn't sleep, and still did not talk much. I was told by his pre-school teacher that he would need "serious help", but I was still in denial, blaming everything on the "ear trouble". I did sign him up for a speech assessment though, but only got notified of an appointment the week before we were moving to a different province. This is my greatest regret. If I had stayed and taken him to this appointment, he would have received help 2 years earlier than he did. I wrongly assumed we could get similar testing done where we were moving, but I was very wrong.
Fast forward 1.5 years. Because of my husbands work, we moved back to Calgary. By this point I'd decided it was all in my head, and Alexander was "normal". I'd somewhat convinced myself it was normal for a toddler to fall asleep at midnight and not talk much. I blamed his inability to play with kids his age on the fact that those kids had older siblings, and Alexander didn't.
3 days after moving back, I registered him for kindergarten. After 1 week in kindergarten his teacher asked to speak with me. She was concerned about Alexander, and asked if she could sign him up to be assessed by speech, occupational therapy and physical therapy. After the assessments he was immediately given full funding, and therapists started seeing him at school. To my surprise, they found that not only was his speech delayed, but his gross and fine motor skills were also behind. He was signed up to see a "developmental pediatrician" in October, but we did not get the appointment until May. The wait was excruciating, since I now wanted some kind of diagnosis and a plan for moving forward. The month before his appointment with the pediatrician, I found that he'd grown a few pubic hairs. I did what I would never recommend to anyone - I googled "5 year old boy pubic hair" and found a lot of stories of brain tumors in boys with early puberty. We were sent to a specialist at the Children's Hospital, and we found that although he was not yet going through puberty, his adrenal glands had "woken up" too early. I was very upset that the endocrinologist did not look at how he had many other problems when writing it off as "nothing". And although I feel more secure that he does not have a tumor now, I was very upset at how he did not order an MRI of the head.
May was here!!! Finally we'd get a diagnosis!! Make a plan!! I was so happy to finally go, so the letdown was huge. All the doctor told us was that he did not have Autism! He was very concerned about his motor skills though, and referred us to be assessed - a referral that took over a year. So after a year of knowing something was wrong, I had no diagnosis for him, and no real plan. I took the various assessments from school to his pediatrician, and she said that because of his speech/language delays, gross motor delays, fine motor delays, he qualified as having "global developmental delay", although she said I'd likely never find out why, but that she would help me fight the school system for the help he obviously needed.
We had one great piece of luck. Without knowing, we'd ended up in one of the best school divisions in the city - one that dealt well with special needs kids. At the end of kindergarten, arrangements were made to have him re-assessed, so that he could continue with speech therapy as soon as he started grade 1. In Calgary, all the funding children get for therapy in preschool and Kindergarten ends as soon as they start grade 1. So children who need and receive help suddenly lose it, and have to go through the process of getting it back. That process took almost exactly 1 year, causing us to miss out on all of grade 1.
A few months into grade 1 Alexander was diagnosed with Epilepsy. He had been falling a lot (with some loss of consciousness) and had started peeing his pants randomly. It turned out he'd been having seizures, so off to Children's we went. Also, around this point, the school elevated his "coding", and he became a special education student. They had been adjusting his curriculum since kindergarten, so I was glad the school now would receive proper funding for him.
Alexander's speech was assessed in the middle of June (after being referred in September), just days before he was done with grade 1. Luckily in grade 1, we had an amazing teacher who loved and helped him beyond what she had to, and I knew he was taken care of at school, even if he did not receive any therapy. We still keep in touch with her today, because she was such an amazing person in our lives. As soon as he was assessed, the speech therapist made arrangements to meet Alexander and I over the summer to work on speech therapy. She was absolutely lovely, and Alexander loved his visits at with the "Braidy Lady" (one of her tools is called Braidy). I really felt that things were coming together, and although we had no real diagnosis, there were plans in place for him.
At the end of the summer, he broke his leg, or that's what they told us. All of a sudden one day, Alexander was screaming in pain. This was very concerning for me, so I took him to the hospital where they x-rayed him, but said nothing was wrong. I took him back home and thought it would get better the next day. It didn't. It got worse, and this time my husband was home to see how he was screaming. We took him to Children's this time, where they x-rayed whatever they hadn't taken a picture of the day before. Nothing. As soon as we walked in at home that night ,the doctor from the previous day called and said that a radiologist saw a small fracture after all. So the next day we went in to get his cast on. I was told that because of his delays and lack of balance, that he would likely injure himself using crutches, so was told to get a wheel chair. He spent 2 weeks in the wheel chair, then we took him back to see if he was better. The x-ray was unchanged, and they said it was probably not a fracture after all. They showed me that the line on the xray was unchanged in 2 weeks. So they took the cast off, and Alexander limped out of the hospital. The pain was gone. I still have NO IDEA what happened, and don't really understand how that line was "nothing", or understand how he could be in so much pain. I won't be shocked if some day in the future we find some real answer to this, but for now it's another one of Alexanders mysteries.
Through some luck, and a bit of nerve, I managed to get Alexander a test that I've since been told is very difficult to get. I basically asked the neurologist to refer him to get a "neuropsychology assessment". I'd been told at the school that he wouldn't get a "psych ed" test done until grade 3, but that I could pay $1700 to have it done privately, which apparently many special needs parents end up doing. My friend Google helped me find that it was a type of "neuro psychology" assessment, so I decided I was going to get it through his neurologist. He had no idea of what it was, and after asking a random colleague if he was allowed to make the referral, he did it. I've been asked several times by baffled medical professionals how I managed this.
It was a full day of neurology and psychology testing, and hours of questionnaires for me to fill out. The best part - other than the 17 page report about Alexander, detailing all of his deficits (we were told that developmentally he is 3.5 years old, or "half his chronoligical age") - was that the neuro-psychologist sent us to a Children's Hospital Education Specialist. I told her our story, and boy did she ever get the wheels moving as far as his education goes. Suddenly, whenever I went to a meeting about Alexander (both at school and at the hospital/clinics), she'd show up, take notes and make demands!! She even came to his school to watch him in the classroom, and acts as a resource to his AMAZING grade 2 teacher. She is currently arranging a meeting with the school staff, his medical/development team and myself, and making sure he gets a second neuro psych assessment in 1 year, so they can make proper plans for his grade 4 placement the following year.
Currently Alexander is in grade 2. They purposefully placed him with a
teacher who is educated in special education, and we met and planned his
year before he started grade 2. The first time she met me she told me that she was excited to have him in her class. Mrs.C loves him almost as much as I
do, and is the only person who deals with almost exactly the same issues
as I do with Alexander on a daily basis. She understands him in ways
that most people don't, and we support each other in finding the best
solutions for Alexander at this point. After 30 years of teaching young children, she is still at a loss of what to do on many levels (just like I am), and she's told me so many times that she totally "gets it". He just does not fit in a "box", but does things Alexander's way. I don't know what I'd have ever
done without his Mrs. S and Mrs. C!
So what's the diagnosis? We don't know. We do know he has a condition called Developmental Coordination Disorder (or Dyspraxia), he has Epilepsy, and he has what's called Premature Adrenarche (early awakening of adrenal glands), Global Developmental Delay as well as ADHD. The only explanation we have for why, although he is 7 years old, he functions at the level of a child of 3 or 4 is that "his brain is wired differently". Genetic testing has been done, and we are still waiting for results, and until we know more, we will keep on keeping on.
After looking through this post, I realize that very little of it shows what an amazing, fun and loving child Alexander is. I adore him, and enjoy who his is immensely. This was basically a description of the road we walked until now, and the fight for getting him help and on the road of having the best life he can have, and in no way a description of him as a person. That would need a post of it's own ;)
