Our school year is coming to an end here in Australia. We are about to see spring jump into summer and our long holidays begin. And for Eva it is the end of kindergarten and the buildup to going to school next year for Prep - a non-compulsory year before 1st grade that runs 5 days a week just like school.
While both Eva and I are excited about school next year it's going to be sad saying goodbye to our Conductive Ed. family this week - the teachers have been incredible, the parents have become good friends and were such an amazing source of information about disability services, funding and advocacy and the Conductive Ed. program was without a doubt hugely beneficial to Eva over the last two years. But I've decided (after much research, meetings and angst) to enrol Eva at a mainstream school next year. It is my personal feeling that with the distinct possibility of Rett syndrome being curable in Eva's lifetime that she get as good an education as possible. It is no doubt going to be challenging for all involved to teach a child that can only use her eyes and is a bit cross-eyed sometimes (ha!) but so be it. We'll take it one day at a time and just go with it, like our dear Conductive Ed. teacher told us to.
Eva's main teacher at CE (Miss N) holds a very dear place in my heart because she brought out so much in both of us. She truly believed in Eva right from the get-go. She was fearless in her assumptions about what Eva was able to understand even when I was still unsure. And she was right. She taught Eva to respond - even if it wasn't a word we could understand, it was important that she at least acknowledge she was being spoken to and attempt to respond. That has encouraged us to push Eva more and now she has complete 'conversations' with her grandmother, Nana, who lives on the other side of Australia. Nana asks questions, waits, and often has to wait some more and then Eva responds. It's simple but it's a conversation and has helped build their long-distance relationship. Learning to wait and learning to expect more from Eva was part of our experience at Conductive Education. We learnt the importance of daily stretching, excercise and integrating movement into her daily life. It is something we must keep up next year if Eva is to have any chance of walking and keeping her scoliosis at bay.
We learnt the importance of Eva being a part of her needs. At CE you don't feed your child, you help them eat by putting your hand over theirs and guiding them. You don't carry your child around - they walk (even if they need all matter of equipment and hands-on assistance to do so) or ride a trike. They have to do things themselves and listen to instructions embedded in songs. We parents have to be firm and fair and not allow learned helplessness to creep into our child's life. I have felt that it's been as much an instruction for me as a parent as it has been for Eva as student.
Over the time we've been there Eva's walking ability improved, her stamina improved, her social skills improved and we saw her quirky sense of humour emerge. One morning the children were learning about the letter S and Eva's teacher, Miss N, put on some sunglasses to demonstrate S words and objects. But the sunglasses were shaped like pineapples and Eva cracked up every time she looked at her.
And throughout this time at CE I have learned more about the neuroscience behind my daughter being trapped in her body and that every little movement she can make is fatiguing for her. I learnt to treat her as her age, not her capability-age which leaves her at about 8 months - the time her Rett syndrome regression began. One mum at CE commented to me that she finds it easy to believe in Eva being intellectually "all there" simply because I treat her that way every day. It was a great insight into why age-appropriate treatment and conversations with Eva are so important - even for those who are in the world of disability as a parent, educator or therapist. The battle of educating people in how Rett syndrome manifests in Eva and to encourage them to believe in her ability is exhausting. It seems never-ending sometimes. But I have to remember it took me some time to learn and we can't all be as amazing, open-minded and brave-hearted as our dear Miss N.