It’s strange the number people we have seen, spoken to, dealt with and encountered since the 7th March 2011 – the day that confirmed our doubt’s about Isabella’s development. Since that day Isabella has undergone examinations, tests and been handled by more strangers than a two year old without a disability. This is something now which has now become the norm and given that Isabella is not great with strangers she is a star and takes it all in her stride (most of the time.)
I know that all these home visits, hospital appointments, check ups and tests are all to try and do the best by Isabella and to get the answers that we so deperately want, but sometimes it does feel like we are under a microscope. Like other families who have a disabled child we have regular visits at home from professionals, namely a Speech & Language Therapist, Physiotherapist, Occupational Therapist and an Advisory Teacher. On the days when these people visit I try to make sure that everything is tidy as it can be, silly I know as they come to visit Isabella but I do feel that they make judgements when they visit families. Anyone who has a child, let alone a child with a disability knows how busy the day is and how many things you have to squeeze in. Now as a parent I truly understand the phrase, ‘There are not enough hours in the day!’ So I don’t want these people to make negative thoughts or judgements to their friends or collegues when they see the breakfast dishes still in the sink or the washing sitting in front of the washing machine waiting to be loaded.
Similarly I feel myself and Isabella are sometimes watched by family and friends when we go about our ‘normal’ routine. For example Izzy cannot hold objects and she has involuntary hand movements and is therefore unable to feed herself. So at nearly two Izzy is still spoon and finger fed. I understand that people are curious, but is it really necessary for them stare constantly at Isabella whilst I am feeding her? Sometimes even pulling up a chair when they themselves are not eating. She has been fed like this since she was weened at six months, it is nothing new. The same can be said when I change her nappy, come on is it really that interesting?
It sometimes feels like I have eyes boring into the back of me, scrutinizing what I am doing with Isabella. I am extremely confident and know that I do the best for Isabella, but sometimes people make me feel uncomfortable. If I feel uncomfortable now, how will Isabella feel when she is older? I know I can be sensitive and I am the first to admit that but would they stare as much if Isabella didn’t have a disability? I doubt it. I know that staring and finger pointing is something Isabella, as she grows up is going to have to deal with from strangers and people in the street. Hopefully having said that perhaps with enough media coverage and diability awareness, society will finally accept that everyone is different and there is no such thing as ‘normal.’