There are many challenges facing students with disabilities in Ontario schools. Statistics show that students with disabilities have lower rates of advancing in schools than non-disabled students do. Promoting accessibility in education is the best way to advance students with disabilities and break down barriers. This article interviews a parent whose child has PHACE syndrome.
Brooklyn Audette, daughter to Shannon Audette (Co-founder of the PHACES Foundation of Canada), has a rare disease called PHACE Syndrome. PHACE syndrome is a disorder characterized by large benign tumours of the face, scalp, and neck, and developmental defects of the brain, blood vessels, eyes, heart, and chest.
Every case of a person with PHACE is different. Brooklyn’s involves a benign tumor wrapped around the back of her right eye and into her brain. Brooklyn also suffers from:
• Missing and malformed arteries leading from her heart to her brain
• A brain condition which causes dangerously high blood pressure
• Strokes and transient ischemic attacks (mini-strokes)
• Chronic stomach pain
• Decreased vision
Despite these challenges, Brooklyn is a happy, active, and funny seven-year-old who likes to participate in many activities, such as Brownies and dance lessons.
Shannon answered some questions about challenges facing students with disabilities in Ontario. While Shannon pointed out some difficulties surrounding accessibility in Brooklyn’s school, she also noted how well the school handles her learning success and accommodation. Furthermore, Shannon elaborates on what improvements can be made to remove barriers for Brooklyn and offers advice for other parents.
Challenges Facing Students with Disabilities in Ontario
Has the school collaborated with you to identify strategies that may increase Brooklyn’s learning success?
Yes, her team at the school, along with the principal and teachers, continually reassess Brooklyn’s individual education plan to see how things have been progressing and adjust to her needs accordingly.
What can Brooklyn’s school do to improve awareness and consideration of Brooklyn’s accessibility needs?
Recently, I asked her Education Assistant to speak to the staff about having a class meeting, without Brooklyn, to encourage Brooklyn’s classmates to have extra patience and understanding of Brooklyn’s outbursts and inability to understand different friends’ needs and adaptation to social play.
Has the school made accommodations for Abbey, Brooklyn’s service dog?
The school has been extremely accommodating to Abbey. Abbey has made it clear that she wanted to be closer to Brooklyn by always being under her chair. The staff placed Abbey’s mat under Brooklyn’s desk, so they are both more comfortable.
Has the school provided Brooklyn with any accessibility devices to address Brooklyn’s needs?
Yes, Brooklyn has numerous vision issues. She has been provided with a tilted desk to help eliminate glare and bring her work closer to her. She also has a specialized chair to reduce leg pain caused by hyperextended joints.
Do the teachers provide their course delivery in accessible formats?
Yes, Brooklyn is provided with large print books, sits closer to the work boards, or uses a computer during teachings.
Does the school playground provide features that allow children with a wide range of abilities to play?
No, it would be great if there were jungle gyms that would be easier or safe for Brooklyn to play on so she could be included with her friends in their playtime.
Are there challenges when trying to access supports, programs, or services for Brooklyn?
Understanding of Brooklyn’s disease can be a challenge as it is not well known. Brooklyn’s school has been very accommodating; however, some places are not very understanding of her medical needs and limitations. The PHACES Foundation of Canada is working to promote awareness of Brooklyn’s disease.
What changes can the school make to help Brooklyn navigate through the school safely?
The school can be a bit more diligent to tripping hazards and to the safety of furniture that is eye level. Brooklyn doesn’t have any peripheral vision and has hit her head a few times on low shelves, for example.
Are there any other accessibility barriers you can think of that Brooklyn has experienced in pursuing her education? If so, how could they be addressed?
When Brooklyn is in a lot of pain and needs rest, she goes into the library. They have a comfy window bench there but if the library is in use, it is not the quiet relaxing place that she needs. A quiet comfy room dedicated to rest would be great!
What advice would you give to parents of children with disabilities who are about to start school?
Meet with the principal during pre-registration to discuss your child’s needs and possible tools and strategies to help them in the school. Ensure the local Community Care Access Centre has a file on your child and can send the school an Occupational and/or a Physical therapist to evaluate school setting. Be open to fully disclose your child’s needs and abilities.
With so many challenges facing students with disabilities in Ontario, it is essential that school boards, parents, and other specialists all work together in order to ensure that education is accessible for all students. To help reduce and remove challenges facing students with disabilities, school boards must provide training to their educators.