Future Reflections Convention Report 2004
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What We Want for Kendra
by Stephanie Kieszak-Holloway
“Don’t expect your child to walk until she is two or three years old.”
“Your child will have delays in fine motor skills.”
“Your child will have delays in gross motor skills.”
“Blind babies are very quiet and passive.”
Kendra Holloway in her Shirley Temple Halloween costume.
Do these statements sound familiar to any of you? These are the types of statements we heard from the “experts” as soon as we started working with early intervention groups. Fortunately we didn’t accept those statements and our daughter Kendra certainly never did either.
Kendra is now twenty-six months old. She was born three weeks early with severe microphthalmia on the left side and cataracts on the right. We later found out that she also had PHPV and some other conditions on the right side. She has been totally blind since the age of six months following two unsuccessful retinal reattachment surgeries. Kendra has been blessed/cursed with a mother who is an information junkie. I remember sitting at my computer the day after she was born looking up information on microphthalmia and cataracts. In my quest for knowledge, I came across the Web site for the National Federation of the Blind (NFB) and even more importantly, the link to the National Organization of Parents of Blind Children (NOPBC). Finally, I had found a group whose philosophy meshed with my own. I joined the NOPBC when Kendra was still very young and was delighted to hear that the next NFB convention was going to be held in Atlanta where we live.
My husband Richard and I attended the first day of the convention by ourselves. We were both so impressed with the program that the NOPBC had put together for parents. Since neither of us had really known any blind people, the convention gave us a great opportunity to see blind people just being people. That probably sounds strange but I mean it in a good way. We saw people confidently walking around the hotel with their white canes and we thought, “Yes, that is what we want for Kendra.” We saw people reading Braille and taking notes and we thought, “Yes, that is what we want for Kendra.” We met blind people who walked up and introduced themselves to us, and we knew we wanted Kendra to have that same self-confidence.
Richard and I returned to the convention later in the week with Kendra and my stepdaughter Sarah. We had a great time at the drop-in “Discovery Time” with Heather Field and Joe Cutter. During the convention, I had spoken to Heather about my concern that Kendra wasn’t saying much at twenty-two months of age. Heather dangled a toy just out of Kendra’s reach, which I thought was a very mean thing to do until I heard Kendra ask for it. Now why hadn’t I thought of that myself?
The cane walk was definitely a highlight of the convention for me. We pushed for Kendra to start receiving orientation and mobility lessons using a cane from the time she was about eighteen months old. Joe Cutter was a great source of information on that topic and I was able to pass along the references he had given me to Kendra’s teachers. At the convention, I had the chance to put on a sleepshade and try to navigate around the hotel using the white cane. I was doing fine as long as I only wanted to go in a straight (or relatively straight) line but when we reached a crowded section of the hotel, I must admit to feeling a moment of panic. I highly recommend the cane walk to other parents. It really taught me more about cane travel than reading a book on the topic ever could.
The exhibit hall was a big hit with all of us. We bought every Braille book that the National Braille Press had for sale, which probably quadrupled the size of Kendra’s library. Richard was also very interested in the displays of various printers and Braille embossers since we are already thinking of what Kendra will need once she starts school.
For me, the best part of the convention was being able to talk to people who didn’t think I was just a mother in denial when I said that my totally blind daughter did not have any developmental delays. I have lost track of how many times we have heard statements like the ones I mentioned above. I even had one woman from the school system who argued with me that my daughter MUST have delays if she is blind. Kendra did work with a physical therapist briefly but we ended that relationship the moment Kendra took her first steps. She has been walking independently since fifteen-months of age. We also worked with a speech therapist for about four months. I don’t know if Kendra really needed the therapy but she liked the therapist and it certainly wasn’t doing any harm. She went from not saying much at all at twenty-months of age to saying three- and four-word sentences at twenty-four months. Anyone who has seen Kendra operate the TV or CD player, or run around in her gymnastics classes would be hard pressed to tell me she has delays in her fine or gross motor skills, and the part about her being a quiet passive baby just makes me laugh.
I am not saying that some blind children won’t have developmental delays, but we need to remember that some sighted children do too. I think parents need to stop being bombarded with negativity from all the “experts” in their lives and focus instead on how normal a life their blind child can have. That’s why we, as a family, will be going to Louisville, Kentucky, in July for our second NFB National Convention.
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