Supporting people with Cri du Chat Syndrome and their families

Starting School - One Family's Decision

by Sarah Brooks on 04 September 2014

It feels like it’s been a long road to get to this point, yet at the same time I cannot believe my daughter is going off to school. Surely I…I mean she…can’t be old enough….Those days in the hospital when she was first born seem like only yesterday, yet tonight I will be ironing in name tags in to her school clothes.

Like many parents of children with CDC we have had to consider the eternal mainstream vs special school option. When Enid was born and we read up on the prognosis I have to admit that mainstream school didn’t seem like an option at all. She started in a nursery which has a special needs intake. And she seemed to really enjoy it. A few months later when she turned two she also started in a mainstream preschool with a one to one. And it was like she came alive. The setting for her was fantastic – the only problem we had was she loved it so much she became very difficult during the school holidays as she was so annoyed not to be going!

So as we inched towards school application time we needed to make a decision. Local mainstream or the special school. We met with the head teacher of the mainstream school and they were very positive about the potential of her attending the school, and agreed to come and see Enid at her preschool setting so they could get a better idea of her needs and abilities. In our minds we only envisaged Enid being at the mainstream school for a year or two, after which her needs would be so different to the other children that she wouldn’t get much out of being in a class with them. But for that year or two, to spend as long as possible with other mainstream children we felt would really help her progress and also help ensure the other children in the village knew who she was and made her more of the local community.

At the same time, we met with the head teacher of the Special School. We had visited the school when Enid was two and we thought it seemed like a great school, but Enid going to school seemed like such a long way off it was difficult to picture her in any setting. Revisiting the school was invaluable. We could really ‘see her’ in the school and could see how she would benefit from the facilities and also their experience in teaching children with similar needs. As an added complication we were told that the school was oversubscribed, with priority given to the Reception intake; basically if Enid didn’t start in September we may have trouble getting her in to the school in future years.

So we had a conundrum.

Following the mainstream school’s assessments of Enid, we had a meeting with the Headteacher, the SENCO, and the would-be class teacher. In that meeting they were very honest and said that they really didn’t feel they could offer the best education to Enid. Her needs are so different to her ‘mainstream’ peer group that whilst she would be in the same classroom, most of what she would be doing would be separate to her class mates. And for us, that just wasn’t what it was about. In that way, it would be inclusion in name but not in practice.

So it’s off to Special School we go! Time will tell if we have made the right decision for Enid, but we think we have. And we are trying to find other ways to ensure she remains a known and valued member of our local community, so hopefully she will have the best of both worlds.

And now, I must get back to ironing in those name tags…