Breaking through barriers for workers who have children with special needs.

Our daughter Jazzmyn is a 3 year old little girl who has a contagious smile and laugh. She was born with Complex Congential Heart Disease and has had 2 open-heart surgeries to date. Jazzmyn is scheduled to have mitral valve replacement surgery at Sick Kids in Toronto at the end of May. This will require her to be on anticoagulant medication for the rest of her life. Being the parent of a sick child is both amazing and emotional. Jazzmyn has had more surgeries and doctors appointments than anyone else in our family. She handles everything she has to deal with gracefully and without complaints. We are so very proud of our “Jazziel”. She is such an awesome gift.

Letter Carrier

London, ON

When Gabriel was 3 years old he was diagnosed with severe autism. Now, Gabriel is
17 years old, non verbal and has sensory issues. We dedicated our life to care for him every day without being squeamish about it. This has been the biggest journey of our lives. Loving
him and caring for him teaches us to be more understanding, accepting and loving of someone who is weak and in need. At the same time we have to be together to be strong and to help him develop according to his needs and his own gifts. Thanks for the support from the Special Needs Project. It’s helped us improve the life of our son and for him to participate in the autism programs at the Geneva Centre. Thank you very much to everyone working for this wonderful project. Special thanks to Nancy B., our advisor. Thank you all–you people are great!

Letter Carrier

Brampton, ON

My son Graeme is 11 years old and has Autism Spectrum Disorder and ADHD. The original plan for a summer activity for Graeme was to find a day camp with a musical theme. Graeme is quite gifted musically – it’s the way his autistic brain is wired. I had no luck. All the camps I found were very intense full day programs which I thought would bore him.

In the end I decided to set up some music lessons for him at a local school and thought to combine that with some music-themed respite outings (Jazz Fest, CBC music plaza, etc). I thought I’d create our own little summer music experience that would work for Graeme. We showed up at the first lessons in July only to find out the teacher had cancelled his whole summer music schedule and no one had thought to contact us. I started to freak out a bit and then I remembered a name and number for a bass clarinet (Graeme’s instrument) teacher that I was given when we first purchased his instrument.

We contacted Mike Dowler, who agreed to give Graeme lessons. Things really took off from there.

Graeme and Mike hit it off. It turns out Mike is Assistant Director at the UBC Summer Music Institute. After a few lessons he asked if Graeme would like to sit in with a visiting school band that needed a bass clarinet player. The band’s practice schedule was perfect: one week, Monday to Friday from 9 am to noon, with a performance on Saturday. Graeme had a wonderful week. He still gets emails from one of the girls in the band and now says he wants to go to UBC for university and to take music.

In BC the supports for higher functioning kids is scaled right back in high school. We are cross boundary for our elementary school which means Graeme will be going to high school without his friends. He will be one of 1700 kids in a new high school. I see music being a very important part of his transition from elementary school. Currently music is something Graeme is very good at. His peers recognize that and it not only gives him “social glue” in some circles but his band teacher has created a “Junior Conductor” position for him with the junior band. This gives him leadership and social opportunities in an area he has ability and confidence.

As Graeme moves into high school I see his ability in music giving him a chance at a smaller specialty program. Failing that, in a regular school stream I see it giving him a subject he likes, a place to start a social group, and an opportunity to share with others something he is good at and feels confident about.

Music ticks so many boxes for Graeme – confidence, academic success, social opportunities, respect from peers, options for different school programs, calming, etc. I remember reading in one of the newsletters about a family who used their Special Needs funding to help pay for their son’s music program and what a difference it made. I know how they feel. I think music is going to be an important piece of the puzzle that is Graeme.

Letter Carrier

Vancouver, BC

Advisor Grateful for Relationships, Connections

For Sheila Stashuk-Sanchez, working as an advisor in the Special Needs and Moving On projects is primarily about “making connections, honouring that families are willing to share, and understanding it’s an exchange: I’m giving but I’m getting back.”

When she saw a posting at her workplace for a project advisor about 13 years ago, she thought it was “awesome” that a union had started a program to support families with children who have disabilities. “It is hard to balance all the areas of your life when you are also having struggles with your children.”

Stashuk-Sanchez works at a center for children and families in Nanaimo, B.C., and also has a private practice where she offers individual and relationship counseling, consultation and training for organizations. She has worked with families and children who have disabilities for 15 years, and has a background in mental health issues that spans 35 years. She has trained extensively in a variety of psychotherapeutic practices as well as holistic practices such as Reiki, Therapeutic Touch and Feng Shui.

Stashuk-Sanchez takes a “systems approach” to her counseling work and her job as an advisor. “You can’t work with a child unless you work with the parents, and parents need to know there is no problem they can’t solve. I am just supporting them in the process– offering some information on resources, ideas and options. There are all sorts of issues: from emotional and psycho-social issues to ‘how can I get services or advocate for my child?’, or how their workplace is supporting them or the impact the disability has on their lives.”

Developing a relationship with the families is an important component of her approach and key to supporting families to move forward.

“I have met some great and interesting people who have shared some of their intimate details with me. I really look forward to calling the families to find out what has happened. The parents often talk to me about the skills and strengths their child has acquired–all the fantastic achievements–and the relief of having those dollars that help every month, whether for developing gross motor skills, an activity their children can attend, or tutoring, or a support person.”

Over the years she has made a strong connection with many of the 11 families she calls. One parent made an effort to find her after leaving the project, coming to meet her at her workplace with a photo album. “She showed me her family and gave me a big hug. It was so nice, so exciting to finally put a face to her.”

Stashuk-Sanchez is an energetic, positive person from a close family that includes parents, two siblings, her husband, their 28-year-old daughter and three dogs. She keeps a gratitude jar in which she and her family put a slip of paper every day with something they are grateful for. “We read them out on New Year’s. We get blessings every day, and when you’re grateful you get more of them.”