[blindkid] Happy Mom

Fri Apr 17 21:25:02 UTC 2009

Dear Kim,
Congratulations!  I really got a tear in my eye when I read about your
daughter and her coming full circle with her trip to Disneyland.  What a
wonderful feeling for you!  I keep telling my daughter, who is 16, that she
is an example (good or bad) to people who see her when she's out and about.
I remember breathing such a huge sigh of relief when we attended our first
NFB convention and saw so many blind people running around and just living
their lives.  I felt like you did -- if they can do it, then so can my
daughter!  Thanks for sharing your story.  Jill

-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of blindkid-request at nfbnet.org
Sent: Friday, April 17, 2009 11:00 AM
To: blindkid at nfbnet.org
Subject: blindkid Digest, Vol 60, Issue 16

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Today's Topics:

   1. Re: vison mins and AT device (Tina Egle)
   2. Dreams really do come true! (Kim Cunningham)
   3. Re: blindkid Digest, Vol 60, Issue 14 (Leslie Ligon)

----------------------------------------------------------------------

Message: 1
Date: Thu, 16 Apr 2009 21:29:14 -0500 (CDT)
From: "Tina Egle" <tegle at oakton.edu>
Subject: Re: [blindkid] vison mins and AT device
To: "NFBnet Blind Kid Mailing List,	(for parents of blind children)"
	<blindkid at nfbnet.org>
Message-ID: <2720.10.10.4.111.1239935354.squirrel at borg.oakton.edu>
Content-Type: text/plain;charset=iso-8859-1

Hi Carrie,

Thank you for your concern.  TVI at Justin's school is too lazy so when
she did come she does 10-15 mins of alphabet braille in mango series when
Justin alresdy was reading up to grade 2 braille with pattern series.Some
contractions he got it and some double contractions and the endings ,
combinations are still hard for him. I got the pattern series from another
blind child's homework from a very dedicated TVI and I have been
practicing on Justin's skills > Dear Tina,
> I don't know of anyone in public schools specifically, and those I have
> known of with autism and/or non-verbal often have the same questions as
> you.
> Rene Harrell, parent POBC of Colorado president, is a great resource but
> one
> of her children has had serious medical needs and she may not have the
> time
> to respond right now. Hopefully in time she will if she has not written
> you
> privately already.
>
> My main suggestion would be to learn what works well for children with
> non-verbal, autism and epilepsy who are sighted. The same therapies and
> teaching techniques only altered to be non-visual if they are presented
> typically in visual format are what should work for your child too. Are
> sighted children with these conditions reading? How? What instruction
> techniques are used? With manipulatives and Braille could not the same
> reading instructions be used?
>
>  Children's case studies and teacher/parent stories I have heard all tell
> of
> very intense, hours a day spent to get reading words for a child who has
> very significant other disabilities. Some are not able to read even words
> but can do activities and some self help/care. I know of one non-verbal
> student (now adult) whose mother got him a job setting out the milk
> cartons
> at a private elementary school during lunch. He loves school and loves
> going
> to this work everyday. He also loves to crush cans and could crush them
> all
> day. The mother looked for a job that fit him and had a unusually good
> vocational counselor who agreed and was supportive. Typically they would
> have had him assembling something mindless like dropping nails into a can
> all day or something and hating it. Most kids who "make-it" that I have
> known who have significant multiple disabilities had exceptionally
> extraordinary parents who worked with Olympic efforts hours and hours
> daily,
> often ignored  or certainly went way beyond the professionals, and never
> gave up on trying even when there seemed to be little or no result.
>
> What is done in the 69 hours? Could there be better tactile access to
> activities done during this time? Is there enough tactile and or sound
> stimulation? Do you see attempts by your child to communicate some way?
>
> What is the "vision" 90 minutes per month? Just that time allowance for
> anything for any child--what can be gained from 90 minutes a MONTH? What
> does your child retain from such infrequent exposure?
>
> Have any communication devices been tried? Why not? A good resource is the
> PACER center in Minnesota. www.pacer.org. I advise calling them and first
> find what would be done or recommended for a child with these conditions
> who
> is sighted.
>
> My Best to you,
>
>
>
> Carrie Gilmer, President
> National Organization of Parents of Blind Children
> A Division of the National Federation of the Blind
> NFB National Center: 410-659-9314
> Home Phone: 763-784-8590
> carrie.gilmer at gmail.com
> www.nfb.org/nopbc
>
> -----Original Message-----
> From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
> Behalf Of Tina Egle
> Sent: Saturday, April 11, 2009 9:14 PM
> To: NFBnet Blind Kid Mailing List,(for parents of blind children)
> Subject: Re: [blindkid] please respond
>
>> Hi carol,
>
> thanks for responding quickly.  Right now Justin gets OT,Pt Slt 2x per wk,
> vision 90 mins per month and no communication device given to use at all
> times. At home he gets 69 hours of therapy from Clearbrook organization.
>
>
> help!!!! Tina
>>
>> I am not aware of any such families at this moment, but I will try to
>> see if others in my state do.
>>
>> Tell us what kind of services your child gets now.
>>
>> Carol
>>
>> At 10:45 AM 4/11/2009, you wrote:
>>>Hi,  Any family with a son or daughter about 12-15 years of age, who is
>>> non-
>>>verbal, austistic and epileptic going to public school?  I would like to
>>>chat and find out how hard is it to get appropriate services especially
>>> to
>>>teach braille and get enough hours out of vision therapy.
>>>
>>>TE
>>>
>>>
>>>_______________________________________________
>>>blindkid mailing list
>>>blindkid at nfbnet.org
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>>>To unsubscribe, change your list options or get your account info
>>>for blindkid:
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o
> %40verizon.net
>>
>>
>>
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>
>
>
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>

------------------------------

Message: 2
Date: Fri, 17 Apr 2009 05:20:24 -0700 (PDT)
From: Kim Cunningham <kim at gulfimagesphoto.com>
Subject: [blindkid] Dreams really do come true!
To: Blindkid <blindkid at nfbnet.org>
Message-ID: <626430.19992.qm at web607.biz.mail.mud.yahoo.com>
Content-Type: text/plain; charset=iso-8859-1

Good morning all,
I would like to share with you all about what can happen if you chase your
dreams. When my daughter was little, around 3 yrs. old, we took her to
Disneyworld in Florida. I was young with the knowledge of how to parent her.
My life was more consumed with fear of the unknown. How would she do this,
what will happen if she does that, and on and on. While at Disney, I saw?a
group of high school aged kids running off to get on a rollercoaster. Amid
this group of kids, I saw a young lady with a cane, just as eager and joyful
as her classmates. No one was holding her hand. No adult was supervising
her. She was just being a typical teenager with a cane. It was a "light bulb
moment" for me. I couldn't contain my smile. It was right then and there
that I decided what I wanted for my daughter. If this young lady can do it,
so can my sweet child. This unknown young lady will never know the impact
she made on our lives. Once my goal was set firmly in mind, I had a
 sense of direction of where to go from there. One moment with such a
powerful impact. 
As I write this morning, I'm happy to say that we have come full circle. My
17 yr. old daughter has traveled to Disney with her school choir. They will
be spending the next 4 days traveling the same path as our unknown friend we
saw when she was young. My dream came true! None of our successes came
easily. It was hard work, but our payoff has been great. I usually volunteer
and chaparone during school functions (I am a stay-at-home mom), but my
daughter informed me that she DID NOT want me to chaparone this trip. She
wanted to hang with her friends and felt confident in her training. I did it
- I really did it! 
I wish all the parents of young blind children the same life experience. Set
you goals high and don't let anyone stand in your way. If your goals are to
feel sorry for your child or to believe?your child?"can't" or "won't", then
there will be no expectations to fulfill. 
?
Regards,
One Happy Mom - Kim Cunningham

------------------------------

Message: 3
Date: Fri, 17 Apr 2009 09:57:26 -0500
From: Leslie Ligon <atfirstsight at ligondesign.com>
Subject: Re: [blindkid] blindkid Digest, Vol 60, Issue 14
To: blindkid at nfbnet.org
Message-ID: <0KI9004Z72VPUU6C at vms173005.mailsrvcs.net>
Content-Type: text/plain; charset="us-ascii"; format=flowed

Dear Heather,

I read your reply to Marie regarding a can for her son. I just have to
say...

I couldn't have said it any better!

The reasons you stated for early cane use are some of the reasons I'm 
going to begin the o & m certification program at Stephen F. Austin 
in Texas this summer.

With an extensive background dancing and teaching ballet, teaching a 
young man who's blind how to move through space was never the 
daunting part of living on the "planet of the blind." I felt 
completely comfortable letting my son (12 next week!) know how to 
travel safely and look for things around him. Every day in those 
early childhood days was another adventure in travel and opportunity. 
In the local malls, parks, and our own neighborhood.

When he was beginning walking at about 15 months, we were also 
advised to make him a pre-cane. It was fine and he did, in fact, use 
it just fine in those arenas. The week before his second birthday, 
the cane I'd ordered (without asking) for him arrived. Together, we 
pulled the cane (which I will always keep) out of the box. I'd 
ordered the shortest one with a smaller roller tip because it looked 
like it wouldn't get stuck in sidewalk cracks. Not knowing anything 
about proper cane technique, I was so excited. I wasn't really sure 
if this might not be another somewhat difficult emotional hurtle 
since it is such a clear visual message that a person is blind. (When 
strangers at the mall saw us with a pre-cane, they'd take second 
looks at us as if to say, "Is he...and I'd say over my shoulder as we 
passed, "Yes, he's blind.)

But when my son and I got to the sidewalk in front of our house with 
his new cane, I told him, Okay, now tap, tap, tap, and roll, roll, 
roll!,"  and he just trotted along the sidewalk, finding the crisp, 
clear edge, where the grass butts against the cement, and went all on 
his own to the other side off the house next to ours without me by 
his side. I knew then, like I knew he understood at 18 months that 
raised dots on a page are how you're supposed to read, that this cane 
would be what he used when you go for a walk.

We've been pretty lucky in our lives to have had some caring o & m 
teachers (COMS), but Heather, as you told Marie, even those with the 
best intentions will sometimes espouse fairly unfounded ideas, cane 
height being just the first of a long list. I think a lot of the 
training has to do with most sighted COMS providing instruction with 
safety as their underlying theme. Yes, of course, teach the need for 
safety, but when you teach dance, you don't teach kids how to do 
everything perfectly before trying to fly through the air in a grande 
jette, you just tell them a few basics, then encourage leaping. 
Therefore, I hope to approach teaching as a COMS the same way for 
kids who are blind or v.i. Maybe I'm wrong, but my gut tells me I'm 
on the right track. No, you should't do leaps and turns in unsafe 
areas, but oh, yes, you should do them!

So, here I go back to school to learn and digest, all the while 
knowing in most every muscle, a great deal of what is important in 
becoming a great o & m teacher. I hope I'll make my son, and others 
like you and Joe Cutter, proud, and eager to hear what I have to say 
about teaching people who are blind or v.i. to "Come to The Edge."

Thank you for your wise words. They're right for Marie's situation 
and just what I needed to hear this morning as I avoid working, 
trying to figure out how the heck I'm going to be away from my family 
for six weeks this summer as I do my blindfold work.

Come to the edge
But we'll fall.
Come to the edge.
Bight you might push us.
COME TO THE EDGE
So we did.
And he pushed ...

And we flew!

Sincere best,
Leslie Ligon

> > Yes I am. I am thinking that we are going to go ahead and request at
least
> > the orientation and mobility evaluation so we can get him started with a
> > cane or pre-cane. I thought of just getting a cane ourselves maybe and
> > letting him have a go at it but I did not know if we might inadvertently
> > teach something wrong or improper use or something.
> >
> > As an aside, I have read your book regarding education of young blind
> > children and now your booklet that is sent out with the Readbooks! Bag
> > from
> > NBP. Thank you! Thank you thank you for taking the time to write all
this
> > stuff and help me to think.
> >
> > Marie (mother of Jack, 3 yrs old with Apert Syndrome)

>Dear Marie,

>Since you said you're still considering opinions, may I respectfully
>share mine with you. I am an early childhood educator and a blind
>person who grew up blind. It is troubling to me why you would think
>that by giving your child a cane and letting him experiment with
>independent movement, you could be doing the wrong thing. The latest
>and most accurate and solidly documented information on the
>development of movement and independent travel in young blind children
>can be found in the book by Joe Cutter. Most orientation and mobility
>instructors are not experts in the area of early childhood
>development. This means that, in my observation, they are often unable
>to identify the differences between developmental/cognitive issues and
>specific blindness issues. There is some very good evidence showing
>why the idea of a pre-cane device does not do what proponents claim it
>does. If you really feel that you want to work with the o&m people in
>your district, I strongly encourage you to educate yourself in the
>area of o&m skills for young children. Joe's book has been quoted on
>this list before and can easily be found with a Google search.
>
>I'm sure you'll find lots of opinions out there on what is best for
>your son. But, you are the one who will live with the consequences if
>a particular opinion you adopt turns out to adversely effect him. Many
>times the particular professional who advised you on this or that
>approach will be transfer the next year and will never see your child
>again.  Your opinion is the only one, as his parent, that truly
>matters. Thus, your opinion needs to be based on the facts which you
>have discovered for yourself, and not on what some well-meaning
>professional tells you. The more I work with young blind children and
>their parents (and I've been doing it for over 25 years now) the more
>I am convinced the parents cannot rely on the opinions of the various
>professionals they meet. No one will consider your child's specific
>needs and characteristics, his preferences and special abilities,
>fears etc. like you will. You cannot expect a professional to have the
>same grasp of your child's situation that you will have.
>
>Also, it is important that you have a realistic grasp of the political
>nature of this issue. There are people with early childhood training,
>as well as people who have blind children for whom they had to fight
>to get correct services, who have very different views on the best
>approach to developing independent movement and travel in young blind
>children, from many paid professionals in the system. As a parent, it
>is important that you investigate both sides of the argument and
>decide what you want for your son. If someone recommends that you
>refuse a cane for your son, and that you give him a pre-cane device
>instead, and he uses it, without much change or development in his
>independent movement after six months, you can't get those 6 months
>back; they're lost to him. If you have a cane for him to use as well
>as letting him try out the pre-cane device, then you will have given
>him options. Furthermore, if you understand the solid developmental
>basis for early cane introduction, then you will know what you're
>aiming for and can work with your child. It is common for o&m
>instructors to see young children for about an hour a week. Have you
>observed how much the average 3-year-old boy moves around in one week?
>There's no reason why Jack shouldn't move around the same amount if he
>has the skills and confidence to do so. You must be his primary
>teacher and the sheer joy of independent movement and its inherent
>challenges will be his motivator.
>
>I so encourage you to investigate for yourself and not simply trust
>the professionals. I am passionate about this topic so I hope my
>opinion has been encouraging and not unsettling for you.
>
>Best regards,
>
>Heather Field
>---

------------------------------

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