It’s so easy to look from the outside of someone’s life and make assumptions about who they are and what their story is all about. Take a moment to look at this picture. What do you see when you look at this woman holding a newborn baby? I look at her smile as she gently holds the bottle feeding her baby, and wonder what this new mom is going through and experiencing at this very moment…
Here is the same woman again 12 years later with her son (who is not a baby anymore). They are in Florida at a national dance competition where her son performed Defying Gravity on stage. This picture was taken at the gala...
Today, this boy is now a 15-year-old teenager. What you don’t see in this picture is the story of what life looked, sounded, and felt like for this mother, her son, and her family. Meet my friend, Lisa Young. She is a wife and a mother to two beautiful children, one of which has a physical disability. I met her son, Tai just over a year ago at the Sick Kids hospital. My husband and I were in the pre surgery room for Bella. As we were waiting for the doctor, Tai approached us because he noticed Bella’s service dog Kadence, as she looked very similar to his pet poodle. With a few polite "Hello's" and "How are you's", both kids were off their way; Tai wheeled his way through the doors and Bella was put on a stretcher pushed by a nurse and the anesthesiologist.
Learning that your child is going to have a lifelong disability can swallow you whole, however it can also make you into the best version of yourself. I wanted to open up my #MomBehindTheLabel platform today for Lisa to share her journey as she shares the insights that she has gained through her own experiences.
MOM BEHIND THE LABEL: Tai was born with a spinal cord injury. What kind of emotions were you and your husband going through when you learned about this information?
LISA: We didn’t know that Tai had a spinal cord injury when he was born. Throughout my pregnancy, I knew there was an issue with his bowel, so we were prepared for him to have surgery shortly after birth and we knew there would be a long hospital stay involved. Tai had surgery at 2 days old for a jeujunal atresia which required a bowel-lengthening procedure. He was the first neonate in Canada to have the STEP procedure at sick kids. He was also born with dislocated hips so he was in a hip harness for a few months, which is why no one noticed that his legs were not functioning properly.
It wasn’t until he was 18 months old that the doctors diagnosed the spinal cord injury after 2 MRI’s. We were devastated when we learned that he would never sit, stand or walk. The neurologist assured us that life in a wheelchair could be a full one but I didn’t really believe her at the time. I am not sure that I heard anything after she said he would never walk.
Well-meaning family and friends were always sending us articles, medication and treatment ideas, only to make it more frustrating for me to explain that his injury wasn’t something that could be “fixed”. I never thought he was broken. It actually took me a couple of years to have that “ah ha” moment when I realized that it didn’t matter that he had challenges. We did many years of physical therapy, occupational therapy and skill development practise. He can now sit, stand with assistance and he can move quite well in his wheelchair. For the most part, we just let him be a kid and figure things out with some assistance. It was easier when he was little, but now some accessibility issues have surfaced now that he is too big to lift!
MOM BEHIND THE LABEL: Raising any child with a disability comes with its challenges. Can you describe what is helping you overcome these challenges?
LISA: We were lucky because Tai has always had a positive attitude. When we were met with a challenge, we often just figured out how to make it work. The world is not built for people with physical disabilities or who have mobility issues. There are steps everywhere...bathrooms that can’t accommodate wheelchairs... We do the best we can to make things work and hope that more businesses and facilities look at ways to make their space more inclusive and accessible.
One of the things that our family has always done was to be open to new opportunities and challenges. When asked to be an ambassador for organizations such as Holland Bloorview Hospital and Easter Seals, it opened up our family to new opportunities that could help us learn more and help others see that life with a disability can be a full one.
There have been a lot of challenges along the way. Well meaning family and friends were offering advice, suggestions etc….this was frustrating at times. I think we tried to listen, but Chris and I really needed to just go with what we thought was best and work as a team to make good decisions. Whenever possible, we let Tai be a part of the process as well. Some parents struggle with this and it can often tear families apart. We stuck together and our relationship became stronger because of it.
Equipment has been an issue. The wheelchair is fine and Tai enjoys the freedom that comes with it. We have tried walkers and canes, but they are a lot of work for little gain. Since PT is not available to him (unless we want to pay 100+ / hour for it!), we rely on sports and other physical activities to keep him healthy. I had very mixed emotions when he got his first wheelchair. I felt defeated when I saw him sit in it for the first time, but as I watched him so happy he could move by himself, I realized that this was a good thing.
Tai is a teenager now so we are presented with a new set of challenges. As he goes out with friends, he is finding a lot of places are not accessible. There are stairs to get into most stores and there are no accessible washrooms in a lot of restaurants etc. It is not reasonable for him to ask his friends to help him and it could make his “dating” life difficult in the years to come. Before he goes out, he will need to plan everything carefully to avoid some of these issues and there will be places he just can’t go to without help.
MOM BEHIND THE LABEL: The teenage years is a time for young adults to begin defining one’s self. Talents are perfected, social skills are honed, and relationships take on more of a serious nature. Peer pressure is at its max and in today’s teen society there are more tempting sidetracks than ever. Tai is 15 years old and is attending high school. For a young teen, he is very well accomplished. He is an all rounded athlete who enjoys playing tennis and carving the slopes skiing. He is also a singer and a musical theatre enthusiast. He is also a motivational speaker and an ambassador for Holland Bloorview Hospital and Easter Seals Ontario, and also tours with WE Day as a junior co-host. I was floored to not only learn that Tai is so talented, but I am most impressed with his maturity, resiliency, and his articulation when advocating for inclusion. Can you tell us about your core values in parenting, in relation to raising a child with a disability?
LISA: Chris and I believe that you should try new things and stay active. We say yes to everything that we can, unfortunately at the expense of our own time and sleep of course. For the most part, our lives seem to be filled with chaperoning kids to activities, programs and events! We are trying to cut down now since we are both busy with work and with our beautiful daughter Taylor who is a full time dancer. Tai is in high school now so he also has to focus on his homework.
Tai was asked to be an ambassador for Holland Bloorview Hospital when he was only 6 years old. At the time he said that he would only do pictures for them and would never, ever speak in public. With some encouragement from the foundation, he did his first speech when he was round 7 years old. Now he speaks to crowds of over 15,000 at WE Days across Canada.
We support Tai by escorting him to events, helping with his speech writing etc. Tai has his Instagram account for interested followers @therealtaiyoung where he profiles his activities and the causes that he supports. Here is one of my favourite videos that Tai was part of in 2016 through the Canadian Olympic Committee and Canadian Tire.
MOM BEHIND THE LABEL: Can you describe what accessibility and/or inaccessibility looks, sounds and feels like for Tai and your family?
LISA: Accessibility has been a struggle for us in the home for sure. We had to move from our old house when we realized that Tai was going to need lifts, bigger washrooms etc. It was going to cost too much for us to stay and renovate so we chose to move. Our new house was built with alterations to the washrooms like roll under counters, wider doorways and a “roll-in” shower.
We had issues from the start. The new washroom did have the roll under counters but the shower was built with a ledge. They were unable to fix it so we had to live with it. The built in ledge to sit on was also too far away for Tai to get to safely so we had to put in a portable shower seat to accommodate.
Our chair lift that we installed constantly breaks down (and it did right from the start). It is working now, but we have had many days where Tai had to crawl up the stairs or we had to carry him. I wish we had put in an elevator but we could not afford it at the time, and still can’t.
We did not make any adaptations to the kitchen, and now we are faced with Tai not being able to use the stove safely. He can use the microwave though, so frozen dinners are his go-to meal.
MOM BEHIND THE LABEL: One of my biggest challenges raising Bella who has complex needs, is balancing my time for my son who is typical developing. Since Petie was born, he has been following Bella to all her medical and therapy appointments. Petie, being a sibling to Bella comes with an invisible weight that many people do not see. I understand that Tai has a sister. Can you tell us about her? What is it like raising both children when they were younger and now?
LISA: Taylor is a very active 12 year old who dances 4 days a week and competes regularly. She also rides horses every Saturday. She is kind, caring and resilient. We tried very hard to make sure she knows how important she is, especially since her brother gets so much attention. Taylor does not come to a lot of the events, but that is mostly due to her schedule. For the most part Tai and Taylor get along, but like any siblings there are times when they argue and get on each other;s nerves.
MOM BEHIND THE LABEL: Tell us about you. How do you balance being a parent, a full time job, marriage and your family?
LISA: This is still a work in progress. I don’t really have a life outside the kids right now. Both Chris and I work full time. Chris has his own business and my work can be flexible for hours when I need it to be. I use my vacation time for events, surgeries for Tai etc. All of our evenings are driving them to dance, vocal class, musical theatre etc. We made this choice though, so we know what we are getting into. As they get older it gets a bit easier. We no longer have to stay to wait for them, we share drives with other parents and our friends have become those who belong to the same activity groups. I would love to write a book about our “Tai Trials” but I just can’t seem to find the time.
MOM BEHIND THE LABEL: How do you manage your stress? What do you do to support yourself?
LISA: I am also not great at this but I do try to have some time to myself. Chris is amazing and takes over everything when I am tired or not feeling well. I have Fibromyalgia and it makes me extremely exhausted at times. I have good days and bad days so i do have to say no to going out a lot on weekends. Hopefully my friends are understanding.
MOM BEHIND THE LABEL: What is a typical day like for you and your family?
LISA:
6:45 am - Wake Tai for school so he can shower and get ready. I do this so Chris can walk the dog.
7:00 am - Make Tai’s breakfast (which he will eat on the way to school because he is NEVER ready on time. Pack his lunch.
7:25 am - Bus arrives and he is off for school from 8:30 - 3:06 pm (Home by 3:45).
8:00 am - Wake Taylor up. She makes her own breakfast and comes home for lunch on her own. 8:45 am she leaves and is home by 4:00 pm.
4:00 pm - Whoever is home walks the dog (me, Chris or Taylor).
5:00 ish - Dinner then out to evening activities (Dance, Vocal, Theatre etc).
7:00 pm - Walk the dog (Me or Chris).
9:00 - Everyone is usually home. Homework is started.
10:00 pm - Bedtime for the kids and I.
10-12 am - Chris works in his home office then goes to bed.
MOM BEHIND THE LABEL: What’s the greatest joy for you? What is the greatest challenge for you?
LISA: My greatest joy is seeing both children find things they love to do. Both work very hard at their crafts and I hope they continue to be successful. The greatest challenge is the guilt I feel when I want to have time for myself. I would love to go away on vacation but we can’t because of the activities they do and the cost. (Having a child with special needs costs a lot!) I would love to go and sit on a beach for a week and read a book.
MOM BEHIND THE LABEL: Have you ever experienced a time you, your son, and/or your family were discriminated because of your Tai’s disability?
LISA: We once went to a festival in Markham and they had some carnival rides. There was a small roller coaster that Tai wanted to go on. I was told that my “crippled” child was not allowed. I was so mad and shocked so I took him on anyway and we never went back to that event.
MOM BEHIND THE LABEL: Something I am learning from my children is how important presence is, and finding joy in any moment. Society places a lot of pressure on families who are raising children with disabilities. I’ve been through many experiences that made my daughter and our family feel judged, ostracized, and unwelcomed. What advice would you give parents raising children with disabilities?
LISA: Enjoy everything and don’t care what others think. Do your own thing. A lot of people want to be welcoming but don’t know how...so teach them! It can be very hard to be stared at and it can be very upsetting. You need to be very strong to be a parent of child with special needs.
MOM BEHIND THE LABEL: If you could change something about the world we live in, what would it be?
LISA: I would make our world more accepting of people’s differences. I would celebrate community and what it can do for all families. All families need help sometimes.
Thank you Lisa for opening up your world to my #MomBehindTheLabel readers. I love connecting with other families who are strong advocates for their children with disabilities. Through your journey, I’ve learned that it is very important to recognize that failure, disaster, shame, suffering and pain do not necessarily make you a better person unless you participate in turning it into something good. Your children are true testaments of you and your husband’s positive role modelling and attitude!
On April 2nd, I had the pleasure of having Lisa and Tai come to my school to support our Don’t ‘Dis’ MY ABILITY event.The learning goal of this event was focused on ‘respect for self and others through the lens of visible and invisible disabilities’. Tai was one of the guest speakers sharing his journey and advocacy in a moderated discussion led by staff and students at our school assembly. Students also had the opportunity to participate in a rotation of workshops that were connected to the learning goal.
Tai was unable to deliver a workshop (because he had to return to his school to prepare for a show that evening). Thankfully, he created this awesome video of sports and activities that he enjoys to share with our students. Thank you Tai for showing us that your ability can go above and beyond a disability!
