[blindkid] Hello

Richard Holloway rholloway at gopbc.org
Fri Dec 30 05:33:47 UTC 2011


Welcome Sarah,

I expect you'll find many good suggestions here on the blindkid list.

Our daughter is 9 and has no light perception, effectively since birth. Like you, we didn't know if there was a bit of residual vision for a while. In fact she had a bit of vision for a few months, but all indications were that she had no vision at all after about 6 months. Strange though it seemed at the time, I too found it relieving when we learned there was probably no vision at all. Like you, we hoped for some indication of vision to reappear, but there is comfort in knowing where you stand and not guessing. "Okay, this is where we are, now what do we do?" Once we began to learn that our daughter could do pretty much anything she wanted even without vision, things got even better. That is where the journey to learn alternative methods of doing things begins. The NFB is a great place to learn all about that.

We were told to expect all kinds of delays but we really didn't have any major ones. The thing is, had we accepted these comments and not pressed our daughter to stay on track with her sighted peers, we likely WOULD have been behind-- possibly WAY behind.

My wife, Stephanie, has written quite a few nice articles that you may find useful. Here is a good place to start, if you're interested. This was written when our daughter, Kendra, was 26 months old:

http://nfb.org/legacy/fr/fr16/fr04sp04.htm

When people take approaches that aren't working well for our kids, it may be useful to take a step back and ask what is different. Why won't your child do the thing you want? Maybe even turn it around and ask why a sighted kid WILL do the thing. Sighted kids want to get to things that are interesting; most often things they can see. Crawling, walking, and standing are hard work. Who wants to do hard work without a reason? Babies are nearly always doing these things to get to something they want, or to make something happen that they enjoy.

Older kids have more information to work with. You can tell a blind 6 or 10 or 12-year old there is a braille book to read on the table and they'll go get it. A blind baby isn't going to do a thing just because a PT or an OT tells her to do it, or probably even because Mommy asks. That all comes later. Same thing for a sighted child, right? What is missing for the blind child is information or feedback to motivate. 

One thing that I think helped with or daughter was wearing shoes called Pip Squeakers. Put them on and when you step on them, they squeak. (They sound like a doggie chew toy.) Pick your child up and put some weight on her feet and suddenly there is a reward for trying to stand a bit, and walking makes even more fun sounds. 

You can see more about the shoes here:
http://www.pipsqueakers.com/

Maybe they helped our daughter, or maybe they just helped us to find a new way of thinking outside of the visual "box", so to speak.

So, what would be motivating to a child with no vision in place of the things sighted kids see which makes them want to reach things? I think most would agree that the answer is mainly sounds and perhaps the occasional smell for things out of reach. Touch is also interesting, but the child has to know there is something there to touch, and that brings up one other important point: A blind child which does not move has a VERY small world-- just what arms and legs can reach. 

A-frame toys over a blind child are a nice place to hang small toys with interesting sounds or textures, but remember make the world larger as soon as you can. Give your child a white cane (available free from the NFB, by the way) that will first be used to explore from where she is sitting or laying, and the will be getting used to having a cane in her hand (she's going to need to use it a lot later on!), and at the same time (or even before that) if you haven't already, put a wooden spoon in her hand or any safe object to extend her reach, and then put some things just in range that make sounds when she finds them.

Maybe a metal pot would make a nice clank when struck with a spoon. Maybe it is a tambourine, or something with bells on it.  Give her reasons to explore. Let her tap one pot and then you tap another one further away and see if she wants to find that too. She may roll towards a sound and suddenly find herself in a crawling stance, for example. It may be a slow start, but it will come, and once it starts, the speed of progress may surprise you.

Something else that motivates sighted kids is trying to copy what they see a "big person" do. A sighted baby may react and try to copy your expression or movements. By now, a sighted child has been watching parents stand and walk for 16 months. A blind baby has no idea that walking or standing is even a thing to attempt at first. Maybe your PT's and OT's don't exactly "get it" as far as the missing information. If they seem like good people to work with, maybe get them more info before you change and have to start from scratch. Unless you find people who have already worked with blind babies, you may be making it harder to start over again.

One extremely useful resource for us was the work of a fellow names Joe Cutter.  There are probably other links others can find, but here is one to a book by Joe-- 

http://secure.nfb.org/ecommerce/asp/product.asp?product=852&cat=47&ph=&keywords=&recor=&SearchFor=&PT_ID=

Carol, here on the list also has some excellent books published, but correct me if I'm wrong Carol, I'm remembering your books start a bit older than Joe's, right?

I'll stop there for now as you're probably already overwhelmed with info. Feel free to contact me on or off list i you have more questions. When we were first starting off with this journey, we could never seem to find as much information as we wanted, so I'm always happy to share whatever I'm able in hopes that it will be of at least some amount of help to other parents. 

Best of luck to you, and again, welcome to the list!

Richard Holloway, Vice President
Georgia Organization of Parents of Blind Children
www.gopbc.org




On Dec 29, 2011, at 9:12 PM, Sarah Dallis wrote:

> Hi. My daughter, Ellie, is almost 16 months old and completely blind. She
> had a VEP two months ago and it came back inconclusive. She may have had
> her eyes closed or she's completely blind with no light perception. It
> helps me to go ahead and think she's completely blind, I'd rather have the
> surprise then to have to lose an expectation, if that makes any sense.
> Anyway, she has other health issues (septo-optic dysplasia, optic nerve
> hypoplasia, hypo-pit, diabetes insipidus, so on and so forth). Those are
> all back seat drivers to her vision in the sense of development.
> 
> She doesn't walk, crawl, or stand. She likes laying on her tummy but more
> for sleep so we're working on her pushing up and reaching for things. She
> can roll.
> 
> My husband and I are both active duty Air Force so she goes to daycare
> about 10 hours a day. I'm having problems with my confidence in her daycare
> and therapists. I'm debating on whether or not I should switch my
> daughter's OT and PT. She is always unhappy and crying during therapy. They
> force her hands and body into positions and make her stay there or do
> something. She's not quite 16 months and her PT session lasts 45 minutes.
> What do you all think? She also receives feeding therapy but she's showing
> more progress withth at then she is with OT or PT.
> 
> In my signature block the second link is to Ellie's blog if you want to
> read more about her. Thanks for your time and I look forward to hearing
> from you all!
> -- 
> 
> Sarah Dallis
> 
> Pampered Chef Consultant
> 
> Order 24/7 Online: http://www.pamperedchef.biz/sarahdallis
> 
> Mom to Ellie: http://elliesgrace.blogspot.com
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