‘Why doesn’t my brother get homework mummy?’
‘But I don’t get to go to soft play in my school!’
And so the realisation begins at the tender age of 5 that life isn’t fair.
It is hard for any child to understand why a brother or sister appears to be treated differently or seems to get preferential treatment. Sometimes that can be explained away when there are large age gaps between siblings, or different parentage or illness. But when the inequalities of life are so obvious even within a set of twins it makes understanding the concept of fairness even harder.
I have been thinking of how to answer my daughter’s questions long before she has had the understanding to voice them. I remember begging a nursery head teacher almost three years ago at this time to make every effort to ensure both my children were photographed together in the nursery even though they were in different classrooms. Plans were already being made to move one of the twins out of mainstream nursery and into specialist provision and somehow I already knew this was the start of their long term separation. Despite huge difficulties even getting Isaac into the room that lady moved heaven and earth for my dream to come true. I remember saying then I had this uneasy feeling it would be the last time my twins would ever attend the same educational setting and be able to be photographed together. Although, due to a house move, 12 months later they did manage to once again attend the same nursery temporarily they missed the annual photographers visit and so this photo means so much to me.
It was the end of life being fair for my babies.
Because of his complex needs Isaac moved on from his additional support needs nursery placement to a school for children with complex needs. Whilst his twin sister remained at nursery for an extra year.
It didn’t seem fair that one four year old had to travel alone in a taxi with strangers while the other got to go in a bus with other children. It didn’t seem fair that one four year old had to be out of the house for 7 and a half hours 5 days a week while the other only had nursery for a few hours a day. It wasn’t fair that one child got so much time with mum and dad while the other came home so tired he fell asleep before his dinner was even made. On the other hand while one 4 year old with autism was getting intense 1-1 support, horse riding, the use of a school hydrotherapy pool every week, weekly trips to the school soft play and sensory room and use of interactive TV and an iPad the other was mostly playing trains, going to the park or playing with her dolls house. Both children born to the same parents on the same day and both diagnosed with autism yet both experiencing life so differently. They were just too young to notice or care.
But now since starting mainstream school herself we are starting to get more questions from our daughter. She has a ‘thing’ for rules and equality and fairness. So why does her brother not get homework while she does? Why does he get to do so many ‘fun’ activities at his school while she has to do so many ‘jobs’ at hers? Why? Why? Why?
I could go into a long explanation about how he requires so much more in order to be able to support his learning. I could explain how the spectrum of autism is so wide and how that means some children need all sorts of intense experiences to help them to communicate and understand the world and how she is able to understand things without needing all these things. I could explain how we never chose for life to be like this and we would like nothing more than for them both to be at her school and doing the same work. I could talk to her about how her brother is non verbal while she is very verbal so he needs much more support and help to be understood. I could explain his Neurofibromatosis to her, or talk about his global developmental delay, or how he is still wearing nappies, or even say how he isn’t ready to learn and do all the things she is doing in school.
But I just couldn’t manage to explain all that in a way that would hold a five year olds attention or in a way that would make her feel just as special and loved as her brother.
So for now I took the easy option. I just said that life isn’t fair and sometimes it can seem like some people get all the good things and others get lots of hard things. But God sees it all and loves us all equally. And mummy and daddy think both her and her brother are equally special even though they are so different. She seemed to accept that.
But then I said, ‘you know what Naomi, mummy will try and make her time fair. So let’s us go spend some time just you and me doing your wonderful reading and letters and numbers together. Then you can get some peace playing trains while I spend some time with your brother. Does that sound fair?’
I can’t make it right for either of them. And the harsh reality is that one will always need more resources, input and support than the other twin. As they get older the differences will only increase. In time I will be able to explain and talk to my daughter more.
And tonight will not be the only night when they only things that will be fair will be my time and my love.