Written by Avery’s Mom
Our youngest daughter has been attending TIPES for 5+ years. In 2016, at the age of 7, she was diagnosed with a rare genetic disorder called Coffin-Siris Syndrome. There are only 165 cases worldwide. The syndrome comes with an array of physical and developmental delays and medical setbacks including autism, hearing issues, respiratory issues and hypotonia. The first 4-5 years for CSS kids is very difficult and many do not survive as they just don’t have the strength at the beginning to fight.
And, the first 4-5 years were the hardest for her. She was a frequent flyer at CHEO –seen by Emergency, General Surgery, ICU, Neurology, ENT, Ophthalmology, Dentistry, Mental Health, Endocrinology, Respirology, Genetics-Metabolics, G-I, and the CHEO- Autism Program. She has lived through multiple admissions, eight surgeries, and we walked the halls as both an inpatient and outpatient too many times.
In addition, on the therapy side, she was followed by OCTC for Physio, Occupational Therapy, Augmentative Communication, and Speech-Language in both the community-based model and centre based model. She literally had hundreds of therapy appointments over the years. She also attended the OCTC preschool for one year and the OCTC School- Smyth Road for two years.
There is too much to tell about her story, her chart at CHEO is five volumes, her appointments at are in the hundreds but here are some key highlights.
When she was first admitted at CHEO, she did not have the strength to breathe and feed without intervention. She had an airway surgery and was exclusively gtube fed for years. She did not begin to eat orally until she was 2 ½. Today- she is eating McDonalds cheeseburgers and is an average weight for her age.
When we first started physio, I would carry her in my arms and turn her head from one side to the other, we didn’t know if she would be able to sit or walk or run- she did not walk until she was four. Today- she is running and climbing and swimming.
She was also completely nonverbal until she was 5 years old- we started with PEC and augmentation communication. Today- she is reading at grade level and speaking to us and telling jokes.
As a 5 year old, she started at TIPES. As time goes on, she continues to accomplish more and more. Looking back, I know that TIPES pushed her to be the best version of herself. She has attended the TIPES school and summer camps, gone on field trips, and is now working on independent living and self-care skills.
She stared at TIPES as nonverbal and now she is talking nonstop at home, helping in the preschool room at TIPES with the “little kids”, telling jokes with her therapists, and singing karaoke with her TIPES friends.
The truth is, we are still “in it “with her but the hardest years are behind us and we chose to focus on the positive side to her life and the joy she has brought to our family. We know her story is a special one. To our family, she is our little miracle.
When this unexpected special mum role comes to be, you go through a period of time where you try to maintain your “old way of life” but you realize life will never be the same. For our family, we went through a complete life redesign and we decided to enter this world with two feet in. There are many warrior parents that I have met and there is a sense of respect and community in the world of “rare kid” parenting. To any mom or parent out there that is feeling overwhelmed with the chapter of life you are in as a parent with a complex kid, I’m telling you to hold on. Find a community that you can build around your child, a community that can help you. You cannot do it alone. I am so thankful that she feels a sense of community at TIPES. When I drop her off, I know she is with therapists who “get it”, “get her” and love her to pieces. That safe environment has helped her to excel academically and socially. Our family will always be indebted. From the bottom of my heart, thank you.