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Processing a New Diagnosis

You may have noticed that I have been away for a while. Life has been busy. My schedule has been packed with classes, my husband's new job position and the kid's schedules at school and daycare. It isn't easy managing a household of five! But, unfortunately, that isn't the reason that I've been away. You see, some things are just hard to write.

If you are a reader of my blog, then you know all about our kids, especially our eldest, Roman. Roman is a curious, energetic and passionate child with a love of STEM. If you've visited here before, you known that Roman was diagnosed with moderate ADHD a couple of years ago. Roman's diagnosis really helped us to understand why he has so much energy to spare and why he is so easily distracted. It also helped my husband and me get to know each other more.

But still, despite the diagnosis, we struggled. I sensed something was wrong so I used all of my arsenal to get to the bottom of the problem. I applied my background in psychology, my knowledge of the elementary school curriculum and of child development, I even challenged myself by going back to school. We tried strategies. Those strategies failed. Roman's behaviour became even harder to manage and, dare I say, out of control. Our love for him never changed, but my husband and I were worried.

I finally reached out to Crossroads Children's Mental Health Centre here in Ottawa. I told them everything; every symptom, every behaviour, every strategy. They referred me to the Children's Hospital of Eastern Ontario over the summer and I remember having my first parent referral appointment over the phone while at the cottage. As I looked out at the water, my heart sank a little when we were told that they were going to rush our request to a specialist.

Two months went by (a blink of an eye in terms of waitlist times) and we were speaking with Dr. Julia Ryan, a school psychologist and Olympic weight lifter. After checking out her website and speaking with her over Zoom (hello, pandemic!), we knew we had our advocate. She agreed to come over to our house for a play-based assessment of our little boy. Within half an hour of a three hour appointment, we had an informal diagnosis: Roman had autism. He was textbook.

I can't say that the news surprised me. I am Roman's mother, after all. Since day one, raising Roman has been a difficult journey. It isn't difficult to love him. He is amazing. But he has been difficult to manage. Traditional methods of parenting do not work with Roman, he has sensory issues, his emotions are extreme and his energy knows no bounds. Oftentimes, when a friend or family member stays at our house for more than an hour, it is usually remarked that Nic and I have nerves of steal. Maybe we do, or maybe we just love him that much.

So now we really are at a crossroads. We know now from the experts that Roman is neurodivergent and that he will need some supports in place in order to flourish both academically and socially. We understand that the idiosyncrasies and behaviours that some children are "disciplined out of" or even "mature out of" will not be the case for Roman. We understand that the human brain does not fit neatly into a box (even if it is shoved) and that the autism spectrum really is just that; a spectrum of diverse individuals with, get this, individual characteristics.

Since his diagnosis, my husband and I have been championing Roman. As parents, our duty is to never give up on our child, no matter how difficult the road. Believe me, I thank my lucky stars every single day that my background just happens to be in psychology and education, however, it has been a learning curve for our friends and family. For us, the news has been emotional. It is hard to grieve when you have three small children to care for. And yet, the show must go on.

Over the last few weeks, I have been reflecting on what the word "space" means to Roman. As someone who is so intense, and usually very much in other people's personal space, it is hard to understand why he needs it sometimes or even how to give it to him. But now that my head has been filled with worry, with stress and with obligations, and with emotions that I am struggling to define, I am starting to understand, at least a little. Sometimes we need space from the noise and chaos of our lives, from the lights and from the sounds, from the chatter and even from our own swirling thoughts. Sometimes we just need space. Nothingness. A chance to reboot. So, as our family learns to live with this new label, I ask you for space. For time. For understanding as our family processes our present reality and makes new plans for the future. We need this in order to come up with the best plan of action to support our son and the rest of our family.

Roman, Aurora and Elliana, we love you so much.

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