More Than a Diagnosis: Mikail’s Story

It was the end of July, I had just had my water broken just over 39 weeks.  I was so excited for us to meet our 2^nd born.  My first experience with motherhood taught me to make time for myself and listen to my body and feel for what this little one wanted to do…. this time I had my water broken and had an epidural to help ease the contractions…and just like that Aug 1^st 2007, Mikail joined our family.

He was stunned for sure, they wrapped him up like a little burrito at the hospital…multiple layers because he was a tiny, 2.6kg baby but he was just perfect for us. We stayed in hospital for 2 days where I really struggled to feed him, and he was at risk for jaundice. Something was wrong, and it was scary and challenging and as result Mikail became very jaundiced and admitted to the Neonatal Intensive Care Unit I. It was terrifying, The NICU staff took excellent care of our Mikail and I stayed with him as much as I could. Mikail’s older brother, Zain, came once to visit his little brother.  Being only 3, he smiled and asked why he was in that funny box.

Mikail spent 10 days in the NICU and required a tongue-tie release before he could go home. I was incredibly grateful, because Mikail fed like a champ after coming home and remains a pretty good eater to this day. That’s pretty much what Mikail did, he ate and was up for a bit and slept. He really didn’t cry too much, he loved being held and loved his crib.  He gained weight and grew but really didn’t meet his developmental milestones…so at 7months of age we entered the world of early interventions, endless appointments, therapies, follow ups and worry.

Mikail at the age of two, was not walking, had very low tone, and could only eat soft textured food as he had already been hospitalized multiple times for pneumonia. He really had difficulty with chewing and coordinating both his fine and gross motor movements.  I quickly learned how to summarize Mikail’s birth history and medical history in 5 mins as it seemed like it had to be repeated on every single medical visit.  My Mikail learned to co-relate his appointment with Tim Hortons and would only eat bagels wrapped in Tim Horton’s paper.  I needed Timmy's coffee to survive the appointments and waiting. His diagnosis at this time was Global Developmental Delay as per Children’s Treatment Network’s Developmental Assessment Clinic.  I wasn’t satisfied with that diagnosis alone as it really didn’t explain Mikail, just described him. I was able to get a second opinion from The I.S.A.N.D. clinic where Mikail was formally diagnosed with Communication Delays, Global Developmental Delays, secondary to Autism.

Our Mikail had moderate to severe Autism, and hence began our journey of ABA and learning how to best support him.  He was such a happy content boy, and still is.  He would just bat his long eyelashes and smile and melt the hearts of his care givers.  But Mikail was exhausted by all this ‘fixing’ that was being demanded of him. He would fall asleep exhausted after his ABA sessions, physio, occupational and speech therapy.  I stopped, took a breath and really asked, "What is it that we want for Mikail?" We want him to be loved, cared for, respected and supported. His therapies only saw him for his challenges-they were prescribing him so much work. My Gym in Markham was one of the few places that Mikail could be himself, be accepted, supported, learn and have fun.

During the Pandemic Mikail was 8 years old, and we finally trusted a respite care worker to come in and help care for Mikail…she was incredible…she took Mikail, bright and early to Walmart and Canadian Tire and let him play in the toy section and ball sections. He was a clear communicator with her and really developed a lot of skills and was having so much fun.  Mikail then went to an ABA school as both my husband and I had essential jobs during the pandemic and post pandemic. We needed a school that also had an after-school program that would support Mikail’s needs.  The Public School made it almost impossible for me to work as they were often short of support staff and did not have a safe ratio of staff and students for us to safely send Mikail to school.   We really were running out of options of where to send Mikail for skills and social development and respite.

Sadly, Mikail’s favourite My Gym Markham Fitness Centre closed during the pandemic, and we were really stuck trying to find an appropriate environment where Mikail, now almost a teenager, could participate, learn and have fun.  We advocated for Mikail to be a part of an adaptive Sunday school program where Mikail learned the Arabic alphabet and the sounds of the letters.  He also attended an adaptive swimming program once a week. We were looking for a program where Mikail could be with peers closer to his age with age-appropriate programming, as Mikail had grown out of a lot of spaces now that he was almost a teen. I had always passed by Centre for Dreams but assumed it was only for adult participants when I saw an ad for a youth program on Facebook.

Making a call to Centre for Dreams and having someone on the other end of the line support and genuinely validate our journey with Mikail was incredible.  We booked a meeting to have Amalia, from Youth Achieving Dreams, give us a tour of the facility and walk us through the program.

I brought all four of us and my mom to the YAD meet and greet, and we were blown away with how incredible and extensive the programming for YAD really is.  I think my fondest memory is seeing Mikail’s reactions to the incubating chicken eggs and the travelling zoo. And of course, the sensory room where he loves taking off his socks. I cry every time I attend an appreciation event and an awards ceremony. Mikail’s bright beautiful smile just says it all. He loves coming to YAD where he can be exactly who he is and have all his needs supported by each, and every staff member and volunteer.  From the boy who would be in tears and become exhausted by therapies….to a confident participant who now goes bowling and has endless opportunities because of Centre for Dreams’, Youth Achieving Dreams Program, we know we will continue to see Mikail smile with all of you!