“Five Years… Then and Now” -Janet

Spiro eating lunch at school

When my son Spiro was first diagnosed with CTD, I thought it would mean better management, a quick fix, and a real turn around for my son’s symptoms. We were being seen by Canada’s leading children’s hospital. I remember that appointment with the neurologist who initially told me about Spiro’s CTD. I was alone. My husband was working. The doctor initially told me it was a metabolic dysfunction, and that the metabolic clinic would see him very soon and begin treatment.

Begin treatment was what I heard. I wasn’t crushed, or devastated… I was told there was a solution. I was very hopeful and looking back at that appointment, this nervous resident doctor – although meaning well – was not completely honest with me about Spiro. I did google his disorder a bit over the next month and half, until I saw Metabolics, but what the neurologist and the internet were saying wasn’t matching up. I had called a neurologist we had seen previously to ask a couple of questions, but nothing made sense.

I can remember our initial Metabolics visit – January 23rd 2012. I was so hopeful. So naive. Yet frazzled and alone at the hospital with my nonverbal son. The doctor was there – and the nurse, and some residents – and I can remember her smiling face. She talked about symptoms and treatment, and she was quite vague, but always smiling… We talked for such a long time it seemed.

At one point I said, “But he will talk one day. At least he will be able to talk.” And then her smile disappeared, and with a stone face she paused and looked me in the eye and said, “Who told you that?”
At that moment something in me broke. In my mind, time almost stopped as if everything was happening in slow motion. I don’t often talk about that appointment; why would I? It was 5 years ago. It was awful, and I get upset thinking about it. But that sentence from Spiro’s doctor was one of the biggest life changing experiences I have ever had. It just changed me. Permanently. It started to sink in. My son would need all of me, and probably forever. There was no magical fix for him.

For a while after starting the treatment protocol, I honestly thought I would wake him up from his nap and he would be miraculously talking words he had never used. But this was not the case. Although Spiro has made huge gains, they have been at his own pace. The first few years were really hard, because I had such a high ‘I’m going to fix you’ mentality. I put a tremendous amount of pressure on myself to do everything. Every med, every therapy, programs, etc. I was trying to fix him. But what I came to learn was, this was my agenda. Although the medication, appointments, and therapy are important… Spiro is still a kid wanting to be a kid.Spiro with The Boss

I think over these 5 years – although I have made Spiro play pawn to a lot of things he hasn’t wanted to do – I believe it has been for his good. Overall, Spiro doesn’t have to be anything more than who he is to make me proud of him. I love him for who he is and that’s that. Do I wish CTD hadn’t crept into his DNA and permanently altered his life? Of course. But these 5 years have shown me that I can’t change that fact. I can however, try to do my best for him every day. I think 5 years have slowly changed my expectations for him. I find myself asking myself, what are some basic things I want for him? I want him to love his family, to know that he is loved, and for him to have a real place in this world.

I think that he is on his way as far as finding a place in this world. Right now, Spiro is in Grade 2 and is 7 years old. He is in an amazing, small, special needs classroom. There are ten students, four educational assistants, and one teacher. He loves his little class. It’s really become his whole world. He sleeps with his class picture at night and calls his E.A.’s “his ladies”, and his teacher “The Boss”.
It brings him so much joy to talk about the days and what his ladies planned for him. And I am joyful, knowing that there is a small place for him; ladies with huge hearts, helping him enjoy his days and learn at the same time.

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