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James

I had a seemly “normal” pregnancy until 27 weeks. At that time, I had heavy bleeding. I was admitted to hospital with a “partial placenta abruption”. I received steroid shots to help to strengthen my sons lungs and I was being prepped for an emergency c section. Fortunately, the bleeding stopped and I was taken off work. I was closely monitored throughout the remainder of my pregnancy. I was told that at any point I was likely to have a complete placenta abruption which is a medical emergency. I would need to make it to the hospital within 10 minutes for James to be delivered. I had the choice to stay in the hospital for the remainder of my pregnancy or just always be within 10 minutes of the hospital. I had quite a few more bleeds and hospital stays but ended up making it to full term, even though I was told many times that was not possible.

 

James was born at 39 weeks, healthy and big at 10 pounds 12 ounces. James met many milestones until he regressed at 6 months. He was no longer able to complete the skills he once was able to do. During this time, he was also having what appeared to be seizures. His arms and legs would stiffen and shake often 50-100 times per day. When we brought him to the emergency room at Jim Pattison Children’s hospital we were admitted instantly, and they began a 24 hour EEG right in the emergency room. My heart sank when the medical team mentioned “Infantile Spasms or West Syndrome”. After a MRI, CT of his brain and multiple EEGs, James was diagnosed with Shuddering Attacks. Which are involuntary movements of the head and upper extremities that occur during normal activities and do not impair consciousness. Unlike Infantile spasms, it’s a condition that James will eventually grow out of.

 

The medical appointments calmed down for about 8 months until James reached 14 months. I noticed that he wasn’t babbling much and often didn’t respond to his name. By 18 months he wasn’t pointing, and he started waving less and less. He loved items that were shiny and sparkly and non-toy items like toothbrushes and sticks. Many areas of his life were a challenge including sleep. James has rarely slept through the night to this day. Until he was 2, he would often be up multiple times in the night, sometimes for hours at a time. When James still didn’t have any spoken words by 18 months, he was referred to Alvin Buckwold for an autism assessment. It was a frustrating time waiting for the assessment because any therapy’s that he was receiving because of his delays, he was no longer able to receive because he was the referral list for autism. So back on the waitlists we went for an SLP and OT.

 

James was officially diagnosed with Autism when he was 22 months old. In some respects, it was like a weight was lifted off our shoulders. I already knew he was autistic before the assessment deep down. With the diagnoses it opened doors to better understand his brain and gave me clarity on why certain things are difficult for James. My life changed from working full time to working part time so we can support his needs and therapy appointments. James is doing well and is learning to use an AAC device to aid his communication. James is an active 2-year-old who idolizes his big sister. He is a sweetheart and loves to play with adults, as long as they play beside him with their own set of objects or toys. We aren’t sure what the future holds for James, we don’t know if he will be able to attend post-secondary, live independently or speak using full sentences. I will do everything I can as his mom to help him thrive and live his life to his full potential.”



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