[wisconsin] Grieving Vision Loss (resources parents and children)

Thu Dec 17 01:23:15 GMT 2009

Amy and All,

Here are a couple of resources that I would recommend as a blind parent:

http://www.familyconnect.org/parentsitehome.asp

Website sponsored by AFB and NAPVI. Not as familiar with NAPVI, but have heard decent things about some of the resources including the 
"Families Connecting with Families" annual conference.

http://www.nfb.org/nfb/Parents_and_Teachers.asp

The National Association of Parents of Blind Children is a division of the NFB. If the ACB had a group like this I would certainly recommend it on this list, but I have found the NOPBC's  publication, "Future Reflections" to be extremely helpful and encouraging as a blind parent of a blind child.  Check it out at:

http://www.nfb.org/nfb/Future_Reflections.asp?SnID=981925667

Here is just an example of the type of positive and upbeat articles that can be found in Future Reflections:

http://www.nfb.org/images/nfb/Publications/fr/fr27/1/fr270111.htm

    Devastated

Future Reflections          Winter/Spring 2008

Devastated

by Amber Bobnar

Editor’s Note: Ever notice how tricky language can be? You said one thing that you thought was perfectly clear, then discover that it was interpreted entirely
differently than you had intended. Amber Bobnar, mother of a blind son and creator of the <www.WonderBaby.org> Web site, deals with nuances in attitudes
and beliefs about blindness in the following piece that might be misinterpreted if not read carefully and thoughtfully. I hope you will give it that attention.

Amber knows that just because Ivan can do anything, it doesn’t mean he must do everything. Ivan enjoys the freedom to explore. In this case, he takes the
opportunity to explore a Braillewriter with his mother, Amber.Devastated. I hear that word a lot: “When we first discovered our son was blind we were devastated.”
I understand that. I’ve experienced it myself. But it’s funny how now, over two years after the so-called devastation, it’s hard to imagine that I ever
felt that way. My son Ivan seems so perfect and so full of potential and possibilities.

But there certainly was a time when all I could think about were all the things Ivan would not be able to do as a blind child. He’ll never blow bubbles,
fly a kite, or watch Sesame Street. Probably because coloring was always a favorite activity for me as a child, I kept returning to the thought that he
would never color in a coloring book. How could a blind child possibly have fun with colors?

Eventually I realized that I was really stuck in the world of can’t, so I began trying to think more positively. I started to say to myself, “Ivan can do
anything he wants to do! He can color, fly a kite, go to the movies, play sports, and whatever else he puts his mind to.” This is a much better attitude,
but it also has a dangerous down side that I almost got caught up in. It’s hard to remember that it’s possible to be too positive. Not only will Ivan definitely
face limitations (as we all do), I also risked pushing him into activities just for the sake of proving that my blind child can do all that a sighted child
can do. I suddenly pictured myself forcing Ivan to play soccer or color in that coloring book just because that’s what all the normal kids are doing. It
made me shudder.

I didn’t want to foster the attitude that Ivan can do things simply because I desperately need him to do those things. I see this with parents of blind
children every day. They push their children to fit in or to participate in activities that don’t interest them simply for the benefit of the parents.

I think it’s very important to remember: My child will do what he wants to do because he wants to do it or because it benefits him in some way.

Now I try to be more realistic in my expectations of Ivan. With coloring, for example, I still think that this is something Ivan can do, but now I think
about how we can make the activity as entertaining and beneficial for him as possible.

Ivan, embracing life and experiencing all that it has to offer—especially enjoying life’s occasional photo-op.Activities like coloring and painting are
good for Ivan because they strengthen his hands, encourage grasp, and facilitate wrist rotation. They’re fun because there are more elements to coloring
and painting than just the visual; crayons and paints, for example, have a distinct smell and feel.

Also, since Ivan is blind, we can experiment with different ways to make coloring and painting exciting for him. We can finger paint with pudding, then
eat our art; we can draw with scented markers; we can place sandpaper under our drawing paper so that the crayon marks are raised; or we can make art with
strings, buttons, curled lengths of paper, and other three-dimensional objects. Whatever we do, it will be beneficial because we will explore Ivan’s other
senses while encouraging him to participate in those normal childhood activities. And most importantly, it will be fun because we’ll only do it if Ivan
finds it enjoyable.

I do believe that Ivan can do almost anything and that nearly any activity presents some sort of learning opportunity. The only way Ivan will learn about
the world is through interacting with it. Of course, Ivan may not be interested in art at all; he may be more of an action kind of guy, and that’s fine,
too. We won’t discourage him from running or riding a bike any more than we would discourage him from playing with paints and crayons.

Remember that your child is a child first. Don’t think of your child as primarily a blind or handicapped child. The disability is an integral part of who
he or she is but does not define who he or she is as a person. Some kids like to draw and others don’t; some kids like to run and others don’t. Let your
child explore the world in his or her own unique way, encourage this exploration, but don’t push him or her into activities just because it will make you
feel better about the disability.

  ***

  I know you had said that your colleague is looking for resources that will help a child with a visual impairment to cope. I would agree with you that this starts with the parents and that is one of the reasons I recommend resources such as these.

  Anyway, I hope this can help your colleague and whoever else might be  in need of a good resource or 2.

  Take care and Merry christmas,

  Steve

  Hello all,

  A colleague of mine pulled me aside today and asked if I had any resources about the grieving process for parents of a child with disabilities (specifically visual impairment).  She also wanted to know if there was anything out there for young children to help them accept vision loss and differences.

  Personally, I think how the child accepts vision loss is a direct reflection of how the parents accept it, but that's just my opinion.  But I wondered what all of you thought?

  She also wanted to know if there was anything out there about how to deal with a child who insists he/she can see well enough to do things, but cannot.  

  My colleague is mainly looking for articles, books, and other information to pass on to parents and include in a resource file.  Any help you can give would be greatly appreciated!

  Thanks,
  Amy

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