I am Kate, a mother of a two year old, Angelina, but it is me who is visually impaired. I have Retinitis Pigmentosa (and am also profoundly deaf).
I know this is a thread for the parents of visually impaired kids but since I was a young girl I have always vowed that I would one day help other disabled kids. I embarrassingly admit, and share for the first time, that I declared to myself that I would one day be the 'Princess Di' to disabled kids! (This was in the eighties when she was, in my mind, just a sweet princess visiting the poor and the sick. Pre-divorce.) Sounds so corny, but what actually happened was my mother mentioned how wonderful it was, when I was just a toddler, to have met a young deaf woman and seen that she was a success. My mother had been told that I would never speak properly, never finish school, and therefore, not have much of a life. Perhaps that woman had changed my life by letting my parents see that anything was possible. I was never held back. As it is, most people don't know about either of my disabilities, I finished school, got a degree, travelled and worked around the world, married and had a child. Not a bad life for someone who wasn't suppose to amount to anything much.
I am at a stage in my life now (as all new mums probably go through) where, while looking at your own child, you also reflect on your own childhood. I have terrible self-esteem issues and have come to realise that my disabilities and childhood experiences are the direct cause of that. The other day I saw a little deaf boy at my daughter's day care and I had this overwhelming desire to protect and shelter him. It was like I could see his future and it upset me to imagine all the hurt, frustrations, and challenges that lay ahead. It was an effort for me to just walk away, though I do admit I look out for him, and especially his mother, when I go to day care. I am hoping to 'bump' into them and get talking. This 'Princess Di' thing of mine is turning me into a freaky stalker! Lucky for them, (or is it unlucky), we may never cross paths as they go on a different day to me.
Gosh, look at me rambling on. I guess what I am trying to say is that I am more than happy to be a voice for your little ones and answer any questions you may want to ask about growing up as a disabled child.
Being deaf from birth, and legally blind since I was in my late twenties (I am now 37 and still don't use any vision aids although told I'd be fully blind by my thirties), you could say I have been through quite a bit. One thing that comes to mind is one thing you are probably all going through right now which is the endless medical appointments. As a small child I hated them so much but all I could do to express my anger was to revert inside and remain silent. I remember apologising to my parents just a few years back for giving them the silent treatment whenever we went to appointments but all they could remember was that I was such a remarkably patient little girl! They actually sighed with relief that it was me with the problems, not one of my two brothers, who wouldn't have lasted five minutes in a waiting room!
Oh, and while speaking about medical appointments. Even though a small child may not have any understanding of what is going on or being said, they are very capable of noticing that Mummy and Daddy are very upset. I'll never forget the feeling I had when sent out from the eye doctor to the waiting room while my mother stayed in there talking for what seemed an eternity, then emerged crying. It upset me more than finding out that I would go blind. It hurt to see my mother so distraught.
So anyway, my thoughts go out to you all and your very special little ones. I don't know if my little angel will have vision loss. i pray she won't but should she, I know she'll still have a wonderful, successful life. I'll show her.
Please feel free to get in touch if you want to talk about anything. I'd love to help.
Kate
