I was sitting on the couch with my four year old daughter, helping her spell out the word in her reading book from school.
“Puh, ah, tuh,” she read phonetically. “Pat!” she said triumphantly having worked out the word.
“Brilliant, well done,” I told her. Lots of praise to encourage her interest and progress.
Then out of the corner of my eye I saw a white bus pull up outside. It meant that Arun, her six year old brother was home from his special needs school. It also meant that Meri’s study time was over.
Arun barrelled into the house and immediately saw what we had been doing. “I want to read too!” he announced and came and sat on the sofa next to where Meri and I had been sitting.
Meri’s face fell. She knew what would happen next.
We opened the book and Arun started jabbing the pages randomly, “Guh! Tuh! Guh! Puh!” He started making phonetic letter sounds at random. He grabbed the book and turned the page and repeated the trick, pointing at random parts of the page and making the sounds.
The fact is that Arun has pretty severe learning difficulties which means that he finds it difficult to concentrate and learn in a structured way. However, he does want to be a part of everything and, bless him, does try to join in. We believe that we should be as inclusive as possible as a family and try to let him. However, this has consequences for his sister who does want to sit and concentrate and learn. Whenever he is around that is incredibly difficult. So, when there is only one parent around (which is quite often because of our work), it does mean that we have to snatch moments with Meri to do the things that she needs to do. Instead of half an hour of quality time on constructive every day, she gets five minutes if she’s lucky.
So many siblings of disabled children report the same experience. Words like “second best”, “lower priority” and “ignored” are used to describe their childhoods. Many of them have a truncated or even lost childhood as they are catapulted into a caring role from a tender age. This isn’t because their parents neglect them, very often they have no other choice. Very often the siblings give them no choice and they make an early and conscious decision that part of their role is to look after their special needs sibling and they do it out of love.
Despite our best efforts Meri misses out in so many ways: despite our best intentions we have never taken her to swimming lessons, often we can’t go and see friends or to new places because we know that Arun won’t be able to cope and quiet, reflective time is a mere wish, not a reality all too often.
That’s why we never describe Arun as special- special needs but never special. All children are special and deserve the moniker. Most especially those whose siblings need a bit of extra help and are a bit different.