Hydrocephalus Canada

Remembrance of Things Past by Sylvia Langlois

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A mother reflects on what education has meant in the lives of children with spina bifida and/or hydrocephalus over the last 25 years. Her son Andrew, was born in 1966 and has hydrocephalus.

In 1971, Andrew was ready to enter nursery school in our community of Oakville, Ont. At that time the only children’s treatment centre with a nursery school program for children with disabilities was at Bloorview Kids Rehab, (formerly called the Ontario Crippled Children Centre) located in northern Toronto. This was too far to travel every day.

The only nursery school he could attend at three years of age was run by the Association for the Mentally Retarded ( now called the Association for Community Living), which accepted children with any form of disability. Many children in this program had not developed communication skills. Andrew and two boys with cerebral palsy could talk, so they tended to play together. Andrew went to the nursery school in his Milwaukee brace ( a full-body brace with a halo extension to support his head), with his walker, then the next spring, his trike, and his gastronomy tube, through which he was given juice at snack time.

The next year we were incredibly lucky that the co-op nursery school our older son had attended was willing to take Andrew, diapers, walker and all, but no longer a G-tube! Car-pool mothers carried him in his brace to and from the church hall. Later the same nursery school took several other children with various disabilities, and integrated them. Other nursery schools in the area refused to admit children with disabilities.

Remember, there was no charter of rights (federal) or human rights act (provincial). No school had to accept a student who was not toilet trained, or who had a disability, and schools for the "retarded" were not part of the public education system. Nursery schools were even less obligated to serve students with disabilities.

We next faced the hurdle of elementary school. In 1973, the year Andrew was to start kindergarten, SBHAO was formed. Through this connection we learned of several other families who had children with spina bifida and/or hydrocephalus who lived in Oakville. One family like us had a five-year-old boy who was ready to enter elementary school, and two families had younger children who were not old enough to be enrolled. One of the latter was Dennis Charbonneau, son of Bonnie Charbonneau, today’s executive director of SBHAO. All of the families got together at our home with the superintendent of the Oakville elementary schools to discuss school issues for students with disabilities.

Again, unlike many other parents, we were very fortunate. Our son entered school in diapers. I walked to the school every day to change him (dragging our preschool daughter with me if she was home from nursery school because of illness). I also helped with Andrew during the physical education class. The kindergarten teacher changed him if needed, when I was not there. In Grade 1, the teacher called the principal to take Andrew to the washroom. Andrew was toilet trained by then but had very short warning periods, so there were lots of accidents, as it usually took the principal several minutes to get to class. As a result, there was a lot of animosity from some teachers. With the support of senior staff and the women teacher’s federation, which refused to support the teachers’ objections, he moved to another school which was more prepared to accept Andrew with all of his challenges.

When Dennis Charbonneau reached kindergarten age, the board arranged for him and two other children to be transported to a central school that was accessible, where they hired a teacher’s aid to assist them. This was almost unheard of! No chance of attending the neighbourhood school: our children were exceptionally lucky to be in school at all!

In the mid 70s, the Ministry of Education ruled that the lack of toilet training was no longer an excuse to refuse to accept children into publicly funded schools. This was a major step forward, but there was almost nothing available in the way of special education for those who needed it. Fortunately, our board had a few learning disability classes, as well as the old "opportunity classes" for "slow learners", because Andrew was lost in the regular class with no help. Teaching assistants were still practically unknown, except rarely, as in Dennis’s case, to help with physical needs.

In 1982, the ministry passed Bill 82, which ensured every child’s right to a free public education, no matter how severe their disability. You may have difficulty understanding what an advance this was, unless you realize how dismal the picture was before that. If you were lucky enough to live in a large city, you had one or two options, such as a children’s treatment centre school like the Bloorview MacMillan Centre school or a specialty school such as Sunnyview in Toronto, but elsewhere there was almost nothing.

Once Bill 82 passed, the situation improved and local school boards were required to form Special Education Advisory Committees (SEAC). These committees comprised representatives from local organizations such as SB&H. The mandate of the committee was to make recommendations to the local school board regarding matters affecting the establishment and development of special education programs and services with respect to exceptional pupils of the board. Gradually school boards increased the services they provided - teachers aids, speech pathologists, more integration, more accessibility, physical and occupational therapy consultation, and assistance with medications and toileting, etc.

Things are still far from perfect, but those of us who remember what it was like before are very grateful for all that has been achieved. We recognize the immense input from parents, advocating for the rights of their children. Many people have gone beyond the fight for their own children to take on the cause of all children with special needs by advocating for them on their local SEAC, as well as in other ways.

We have made progress, yet there is still far to go, especially now, when everything is changing. Those with school-age children must be alert to new directions coming from the Ministry, of Education and Training. Be prepared to advocate strongly for your children. Consider becoming a representative on your Board’s Special Education Advisory Committee to advocate for all children with special needs. We must ensure that supports and services continue to be provided so that all children may reach their full potential.