Redefining Disability Week 7: Challenges with School Life

IMG_1635

My husband and I believe that education works best when parents and the school work hand in hand. Over the thirteen years we have had our children in school, we have worked hard at establishing relationships with teachers, communicating, asking questions, and solving problems. We have had the privilege of working with many dedicated teachers, but school life continues to be a challenge for our specially-abled children.

Our first major challenge was accessing funding. When our twins were in kindergarten, the consultants we worked with told us our boys needed one-on-one assistance because their needs were so different. I dutifully filled out the required paperwork and handed it in mid-December. The principal told me funding should be approved and appropriate staff hired by the end of January. Every two weeks I checked in with the principal. He told me the paperwork was in and we needed to wait. I asked in January, then in February, and March, and April. Every time I was given the same answer. Finally in May I phoned the Minister of Education’s office. A couple hours later I discovered funding had been approved in December, but somehow communication fell through the cracks. I’m not typically an angry person, but that day I had to calm myself down for a few hours before I went to see the principal.

In Alberta there is funding for early childhood education (PUF) and then different funding when a child starts grade 1. After the initial funding issue was resolved, the principal told me our boys would probably go back to only one teacher assistant when they moved on to grade 1. After talking to some other parents who have children with special needs, I requested a meeting with the school division’s special education coordinator. In the meeting I outlined our boys needs and requested that two assistants continue to be provided, one for each boy. We took a break from our meeting and the coordinator went outside to observe our boys at recess time. It wasn’t until years later that he told me the story:

The boys played in a sandbox. When the bell rang, twin one stopped what he was doing and stood up. Twin two kept playing as if there had been no bell. Twin one spoke to twin two, but twin two kept playing. Twin one grabbed twin two’s hand, but twin two resisted. This continued for a while. By this time most of the other students were already back inside the school building. Twin one came to the coordinator, grabbed his hand and pulled him over to twin two. No words were exchanged, but the coordinator received the message loud and clear that he was being asked to help get twin two back into the building.

Since that time our twins have had one-on-one help half the school day and two-on-one help the other half. We were fortunate to have the same caring individuals work with our boys for seven years. We have faced other challenges since then – funding was available, but no therapists to fill the need; challenges with speech; communication gaps; challenges with social skills; changes in staff; misunderstandings (including having teachers phone Children’s Services instead of communicating with us).

I’m thankful for the progress our boys have made. Our task as advocates is challenging, but also rewarding. When I see our children laughing and playing it gives me the strength to go on.