In my previous post I mentioned that I grew up in a family of visually impaired people and my husband and I both went to special schools for visually impaired children. For us being visually impaired is ‘normal’. As my impairment is hereditory it was no surprise to us that the children were visually impaired.
When they were born we did face some questions from Doctors and midwives about our choice to have children, but I don’t really want to focus on this issue, apart from to say that it wasn’t an issue for us, it was just a normal part of life and we were doing what most of our friends were doing at that time, ie getting married and having children. We also felt very positive about being able to provide positive role models for our children. We recognised that they may face additional difficulties in life being visually impaired, but felt that we were, and are, in a good position to be able to support them to value themselves and to achieve what they want. Our view is that all children are likely to face challenges in their lives, and as parents when you decide to have children you cannot anticipate all the challenges that your children may have to face. You just hope that whatever they are, you are able to do your best to support them to face it.
As I said, visual impairment, for us, is ‘normal’. The unanticipated challenge came as we gradually began to realise that our oldest child was behaving in some slightly unusual ways. To begin with we put the little oddities down to the quirky personality of a very bright toddler. The move to nursery school gave him the opportunity to interact in a confident and curiously intelegent way with the staff, but he seemed uninterested in engaging with the other children. At this time we, and the school staff and Visual impairment advisory teacher put this down to his visual impairment. We thought, that with support, he would develop more confidence as he got older.
As time moved on, however, it gradualy became clear to me that although he was beginning to engage more with other children, it was not in the same way as his peers and engagement generally had to be on his terms with him controling the rules. Although school and other support staff were still regarding this as an aspect of his visual impairment I was beginning to question this. After all, I and my partner, had grown up with a lot less sight than my Son and had always wanted to play with other children. I could remember at his age being left out of games and not being able to find friends in a large playground and feeling very upset about it. Whereas my Son was not playing with other children and spent playtimes on his own jumping up and down in a corner, but did not seem to be upset about this.
Having worked in various capacities with disabled people and with research around improving the lives of disabled children and creating opportunities for disabled people to make choices and take control, I had some awareness of autistic spectrum disorders, so I began to do a bit of research. After reading a summary about aspergers syndrome on the National Autistic Society’s website I felt like I had read an explanation of my Son’s behaviour.
Having satisfied ourselves that there may well be an explanation other than visual impairment to explain some our our Son’s difficulties we then embarked on the unfamiliar journey into aspergers syndrome.
The process of assessment, diagnosis, developing support strategies and living with aspergers has presented us with some interesting and unique challenges, both of a practical nature and, particularly for me, a challenge to my values and ideologies.
I will talk more about these challenges at another time, but for now, I need a cup of tea and a chocolate biscuit.
Thanks for reading.