· special needs,special education,advocacy,respite,strong mom

My husband and I rarely go out. And when we do, we make sure we use this valuable time to reconnect and learn how to be husband and wife again. Having a child with special needs requires our undivided attention, and making time for us may not always on our priority list.

Last week my husband and I had the opportunity to attend a benefit concert called, Dream Serenade. Here are some snapshots of the evening (when we weren’t checking the cameras on our phone to see if Queen B was okay without us)...

Dream Serenade was established in 2014 by Toronto musician Hayden Desser and his wife Christie Greyerbiehl. This dynamic duo also produce the event as an annual concert to benefit Toronto’s Beverley Junior Public School and other GTA schools that support children with special needs, and to support the Family Relief Fund, which provides respite to parents and caregivers.

In previous years, this event have included memorable appearances such as: Barenaked Ladies, Gord Downie, Sloan, Bahamas, Serena Ryder, and Feist. This year, the Dream Serenade concert was held at the Roy Thomson Hall. This was a sold out event where over 2000 friends and family of the Beverley community gathered to celebrate the educators and volunteers who teach and care for the students year-round. This magical evening had me crying happy tears, smiling from ear to ear, and singing along to the music. It was powerful being in a sea of a community that had come together to support the children and families who live with disabilities.

Every year this concert features a short documentary dedicated to all the people who support and live with disabilities. My long-time friend Kristen Wood is a producer, and is also slaying the world for her daughter with special needs as a #StrongMom. She invited my family and I to be part of her newest film that made its debut at the Dream Serenade. For this blog post, I will be sharing my interview with Kristen and her short film!

MOM BEHIND THE LABEL: Can you tell us about your family?

KRISTEN: Trevor and I have been married for 10 years. Our eldest daughter Scarlett is 9 years old, and our youngest daughter is Ryker who is 6 years old.

MOM BEHIND THE LABEL: How did you and your husband learn about Scarlett’s special needs?

KRISTEN: Scarlett had a stroke at birth. She got stuck during delivery and was taken into the ICU at the Women’s College right after delivery. There, she started having seizures. After 24 hours we were transferred to Sick Kids through an underground tunnel system. There, after another day or two, we were told that she had sinus venous thrombosis. I would explain what that meant to the people around me with very confused looks on their faces. It wasn’t ‘till much later that I realized that she had a stroke and that CSVT was a type of stroke.

She was at Sick Kids for a month after she was born and we were so happy to have our first child that we couldn’t process what was going on. I have a very vivid memory of when we were told that our daughter would have Cerebral Palsy. We were in a very small waiting room at Sick Kids and one of the doctors that had been with us throughout the process was the one to tell us. There was also a social worker in the room and I remember she was very pregnant and about to deliver in a couple weeks. Inside I was so angry that she was there that it distracted me from processing what was going on. I was upset that my baby was hurt and this glowing woman about to potentially have a very different journey than mine was there telling me about how injured my little girl was.

When he broke the news, all I could relate to was the show “The Facts of Life” a TV show from the 80’s. One of the characters Blair, had a cousin Geri and she had CP. I remember she had a speech impediment and had a limp - but that’s all I knew about what CP was and I just cried. My husband had no reference at all and he didn’t know why I started to cry… so I had to describe what I knew about CP which made me cry even more - looking back now - I’m glad that I had been introduced to CP through TV. Geri Jewell is her real name and she was the first person with a disability to have a recurring role on prime time TV.

MOM BEHIND THE LABEL: Can you tell us about Scarlett’s identification.

KRISTEN: Scarlett has a diagnosis of Cerebral Palsy. She has epilepsy and is non verbal. Scarlett uses Sign Language to Communicate although she is not deaf. This is a very challenging thing to pursue as she doesn’t get access to learning ASL and nor do we as a family which makes learning the language and teaching it to her difficult. If Scarlett had any hearing loss at all she would qualify, and so would our family, to get access to ASL instructors to help our family communicate with her and each other in ASL.

Although this is a hurdle that we deal with daily, Scarlett is successful in learning and using ASL to communicate her needs very effectively. She teaches me words now - which is AMAZING. She also teaches younger kids at her school ASL in a group called “Signing with Scarlett”. Using ASL in her own class has also created learning opportunity for others. There are other non verbal kids in her classroom that are now using sign more effectively and that also makes me proud of all the advocacy I did for Scarlett in the early days.

MOM BEHIND THE LABEL: I’ve known you since the Bloorview Play & Learn days back in 2012. I remember those days when we use to bring our oldest daughters to this nursery school in one hand, holding their belongings in the other, and balancing our babies in a carrier around our back or front side. Can you tell us about your role as a mother to a child with special needs today?

KRISTEN: One thing about being a mom of a kid with Special Needs is that, no matter what, your family always comes first. It’s being a caring mother…. on overdrive…. These kids 100% NEED you. People who know me and my job, know that I’m quite good at juggling schedules and I think my job prepared me for a life of scheduling things for her. But being Scarlett’s mother has always come with worry, concern and fear. Worries for her future, concern for her wellbeing and fear for absolutely everything she faces.

If she’s sick and has a fever, her seizures can be worse and that’s a scary thing to know. If she misses her medication because you’re stuck in the car, a meal cause you’re on the road or late from work...all these things can lead to bad behaviour, detrimental consequence, bad night’s sleep, etc. everything snowballs. Whether it’s a snowball of activity in your mind or in real life - it’s something you face daily.

I need to know how her day was at school from her teacher because she can’t tell me. I need to know that she’s taking her medication even when she doesn’t want to open her mouth to take it. She needs it. She needs good healthy food as her body doesn’t move like a typical kid and she needs good clean energy to help her make it through the day. Treats are tough. I’m strict on food - but I’m way more relaxed than I use to be!

Working while balancing her health is extremely tough. Appointments, therapy, picking up medications, making sure they are ready and available, going to doctor’s appointments (she has 9 different doctors not including the dentist and orthodontist) making sure she’s healthy and that her new meds are balanced and not affecting her adversely (which all of them have some terrible side effects..) it’s more than tough. It’s a job. Working for your child is something that people don’t recognize. You’re a mom you have to do it. It’s your kid. But it’s a truckload of work that goes unrecognized. I spend at least 5-10 hours a week on coordinating, filling out forms, planning, ordering meds, tracking behaviours… and that doesn’t take into account the actual appointments you have to attend. Usually you have to take off a full day because the appointment can take up to 3 hours of waiting, registering and talking to the Dr. etc.

During September and October I had 12 appointments with Scarlett not including her weekly therapy. The first day of school she had an appointment at Sick Kids and we saw 2 of her friends from school there on the same day.

It’s a lot of work - but it has to happen.

We also have another daughter. She is 6, typical, and is often knocked off the priority list. We try our best to do special things with just her - but you never feel it’s enough. And the juggling comes into play again….

MOM BEHIND THE LABEL: In the book My World, Your World and Our World In Between you wrote a beautiful poem called ‘With Love’. Tell us about this poem and where it stemmed from.

KRISTEN: This letter was based on a couple interactions with people that are very good friends of mine that were using the “R” word. When people use it - it’s a difficult emotion to describe - but simply, it hurts my soul. It’s hard to confront people when they use the word that it affects me because it’s personal. People can choose to say what they want to. Sometimes I don’t think that people understand the hurt that word carries. I wanted to let people know that when they say it, it makes me extremely sad. And I wanted to share it in a letter so that people would know that I’m not angry or mad at them for saying it but that they have a choice to say something different. It’s meant to teach. And it’s sent with love because I know they didn’t really say it to hurt me or my daughter. But I had a choice to educate and advocate for her.

MOM BEHIND THE LABEL: I’ve heard many families and people in the education field tell me about Beverley Public School in Toronto. They have nothing but positive stories to share about this school and community. Describe this school in 5 words.

KRISTEN: Community, caring, beautiful, safe, love. (5 really isn’t enough…)

MOM BEHIND THE LABEL: Can you tell us about what you do for a living? For the past 2 years you’ve dedicated your time to produce a short documentary showcasing children and their families who live with disabilities. Tell us about this year’s theme for the video you produced and what you want others to learn from it?

KRISTEN: By trade, I’m a producer. I produce commercials. But my love is storytelling and helping the communities that directly affect my daughter and our family. But I don’t do it alone. In every film I do there is a HUGE list of names of people who mostly donate their time, money and services to make it all happen.They deserve the glory.

 

I’ve done 3 films for the Dream Serenade and the stories created continue to reach people across the world. TIFF Kids played the 'Siblings' film this past March and it has been in film festivals in the US, Europe and Qatar. The film “Grandparents” was in a festival in Huntsville this past summer and I have hopes that this year’s film and the others continue to gain ground to share the stories of our kids and our families. So PLEASE share it, post it…. whatever… get it out there…..

MOM BEHIND THE LABEL: Thank you Kristen for inviting my family and I to be part of this beautiful video. Without further adieu...

MOM BEHIND THE LABEL: As a mother who also has many labels herself, what would you like to share to all my #MomBehindTheLabel readers?

KRISTEN: It’s a journey and you never know what’s around the corner - but look for the joy when you can. Try new things and advocate. I try and look at things differently…..I’m only going to be a mom once and it’s the biggest job I’ve ever been given so you’ve go to nail it. It’s important. For them and for you. And it pays in love which is the best currency around. The rest can wait.

Thank you Kristen for sharing your joys and sadnesses that life’s challenges can bring. You have a gift in sharing our beautiful world of raising children with special needs. Check out Kristen's other films that were featured in previous years at the Dream Serenade!

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