It takes a village to raise a child…
Elaan is an anonymous donor-conceived child. I knew that as a single parent by choice, I was going to need lots of help raising him. I am fortunate that my parents are very involved in his upbringing and that many friends and family members including Elaan’s wonderful godmother, Lynda, have been supporting us from day one. Elaan was born full term, but at a low-birth weight. The doctors noticed at my c-section that Elaan had a true knot in his umbilical chord. We suspect that Elaan lost oxygen while in the womb. At six months of age, Elaan developed infantile spasms, which were causing him a great deal of cerebral irritability. He cried a lot and was also dealing with acid reflux, which meant he threw up a lot, sometimes eight times a day. Fortunately, he was put on medication to treat both the seizures and the acid reflux and very quickly his joyful personality shone through.
At age 1½, Elaan was referred to the Ottawa Children’s Treatment Centre. The village that was going to raise him grew in size. And what a village it was! Elaan began receiving physiotherapy from Michèle Murphy, occupational therapy from Nancy Lebrun and low vision therapy at home for his cortical vision impairment from Chantal Chantigny. It’s hard to describe the impact that these therapists had on our lives. They were not only giving us the skills to help Elaan, but they were also kind and patient listeners, and offered a wealth of information when it came to other resources for children with disabilities. Elaan’s developmental pediatrician, Dr. Nair, eventually and with great compassion diagnosed him with cerebral palsy. The OCTC social worker, Julie Abgrall-Cowan was always available to talk and ensured that I had applied for all of the necessary tax credits and special programs available to us. I particularly appreciated the case conference that the entire team of therapists participated in to ensure that the team was working toward similar goals for Elaan. It was so clear to me that this team of people knew Elaan and loved him. They knew that music was one his passions and they incorporated his love of funny noises into their daily work.
By September of 2012, Elaan was ready for preschool at the OCTC. This meant a change of staff with respect to all of his therapists about which we were nervous. But, Janice Forbes and her experienced teachers as well as the talented therapists quickly put us at ease. To their credit, they were excellent listeners who started by asking us what we thought Elaan would like and need. Elaan has just finished his first year of preschool at age 3 and the things that he has accomplished are amazing! His teacher, Kim Bossi, assured me that any separation anxiety would be short-lived. She was right. Within two weeks, Elaan was immersed in the program and loving to play, paint, get cuddled, be read to and dance in the snoozelen room. He also began standing in a supine stander, using a switch to activate a toy and learning to walk in a walker. By the end of the year, he was able to stand for an hour each day and could walk the distance from the OCTC to the CHEO cafeteria (about a city block in length!).
We recorded Elaan’s physiotherapist, Lise Brando, showing us how to stretch Elaan’s arms and legs every day. His caregiver, Chhaya, is now an expert at this, and Elaan’s loves “blissing out” while listening to his favourite tunes during this time. Laura Bradley, Elaan’s occupational therapist, has visited our home on several occasions to help us with Elaan’s various equipment including his bath seat, toilet seat, wooden stander made by the OCTC volunteers, and his switches. Rose Rene is Elaan’s speech and language therapist. Elaan is non-verbal at the moment, but Rose is working on building his communication skills so that we will know what he wants and needs as he gets older.
Tara Previl, at the seating and mobility clinic, developed an ingenious method to ensure that Elaan can sit safely and by himself on an airplane when we travel and is currently working with us to custom order a wheelchair for him. This is such a good metaphor for what the OCTC does for special needs kids; they not only teach them to walk – they help them soar!
Every other Saturday, Elaan attends the Tender Tots program from 9am to 3pm where he makes the most beautiful crafts and basically just has a raucous good time with the team lead by Nurse Sarah Stonier. This program offers parents the most thoughtful gift of time. It allows me to catch up on work, take a yoga class or just rejuvenate a little knowing that Elaan is in such good hands. Elaan is g-tube fed so having a nurse present at the program ensures that he can attend and have his nutritional needs met.
Elaan is an incredibly happy child with an infectious smile. I feel so grateful to have him in my life. He has taught me to be more present and to appreciate the important, small things in life. The entire team at the OCTC rejoices in Elaan’s successes and empathizes when we have difficult times. They make a life-changing difference for me, for Elaan, and for all of the other kids that they serve. A parent I once spoke with described the OCTC as a lifeline for her family. I would say the OCTC has become our family.