[blindkid] blindkid Digest, Vol 123, Issue 1

Tue Jul 1 13:06:20 UTC 2014

Hi Lalena,

My 16-year-old kiddo (she is my niece and has been with me since she was 4 years old) is completely blind, autistic, global developmental delays, sensory issues and has pituitary problems that require daily treatment.  It has taken a lot of hard work, but right now she does communicate verbally her basic needs with a little bit of social conversation (she likes to ask people their names and if they have a son or a dog); she walks independently using her white cane, but must always walk with someone who can assist with stairs, curbs, street crossing, cracks in the sidewalk, etc.; she eats just about everything, even though at 7 years old she was living almost completely on Pediasure because her sensory issues caused a gag reflux at all foods; she goes to a regular high school, but is in a contained classroom for kids with multiple disabilities and also goes to a regular spanish class and women's choir with assistance from a para; she attends a summer
 day camp for kids with disabilities where the staff is pretty young so she gets social interaction with all ages, all abilities every day; she plays baseball every spring and fall through an organization that has "buddies" which are volunteers that are usually come from local youth sports or church groups; she loves to travel and eat out at restaurants; she loves to swim (well, splash and play but is learning to swim) and last year she even jumped off the diving board with one of her camp counselors; she has weekly piano lessons and plays extremely well even though for quite a few years her left hand didn't want to work together with her right hand.

She has come this far because of our hard work, but also with the help of great teams along the way such as her PT, OT, O&M, TVI, teachers, special needs organizations, friends and family.  I found out a long time ago that she doesn't quite fit in with the "blind" organizations because of her other disabilities and she doesn't quite fit in with the "autism" organizations because of her blindness so I keep an eye on the information from both groups and try things out that are right for her.  The main thing is that I have had to be creative and keep trying lots of different ways until I find a method that works for her learning abilities.  And I have had to change teachers/therapists along the way too because they don't always do what's right for her.  I'm not sure they always like me so well in her IEP meetings, but I always make sure they are moving in the right direction for her.

I could go on and on, but will stop there.  I just want you to know that my kiddo has taught me more about how to be a good human being than anyone else in the world.  She is amazing and without a doubt the bravest person I know.  I would be happy to talk with you about any specifics on how we have gotten past a lot of hurdles and how we have accomplished certain things that other people thought would never happen.  Feel free to email me offline with any questions at all.

Take care and know that you are definitely not alone!
Deb and Denise

On Tuesday, July 1, 2014 6:01 AM, "blindkid-request at nfbnet.org" <blindkid-request at nfbnet.org> wrote:

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Today's Topics:

   1. More than just blindness (Lalena Fayre)
   2. Re: More than just blindness (empwrn at bellsouth.net)
   3. Re: More than just blindness (Marianne Denning)
   4. Re: More than just blindness (Carol Castellano)

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Message: 1
Date: Mon, 30 Jun 2014 07:19:52 -0700
From: Lalena Fayre <lalenas at gmail.com>
To: blindkid at nfbnet.org
Subject: [blindkid] More than just blindness
Message-ID:
    <CAH4h=taa_cd2PESjfdVcnXZJF1hiZ9mKDzpasPUmLRFEfdrb_w at mail.gmail.com>
Content-Type: text/plain; charset=UTF-8

As I read through my latest issue of Future Reflections, I was struck with
a further sense of isolation. The same holds true when I read this listserv
and review the agenda of the upcoming national conference.

My son is totally blind with multiple other disabilities - nonverbal and
global developmental delays that impact every area. I'm fortunate to have a
good foundation and understanding of blindness education. But when you add
the other issues to the blindness, one is struck with how much blindness
complicates things. For example, typical adaptive communication devices are
vision based. Another, pre-Braille work is important but after 3 years of
it and no significant progress made, you are forced to deal with functional
skill development which the therapist don't know how to do with a blind
child, let allow a blind cognitively delayed child.

I turn to the NFB for support and resources, yet publications are full of
typically developed children who happen to be blind. I call my local
organizations here in the bay area (which I know are inline with NFB
philosophy) looking for social opportunities for my son, but he can't
participate because of his developmental delays.

At the end of the day I'm left wondering......am I the only parent of a
child with multiple disabilities, developmental delays, AND blindness? Are
the majority of blind child typically developed? And where do I turn for a
network of parents who may understand?

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

Message: 2
Date: Mon, 30 Jun 2014 14:51:32 +0000
From: empwrn at bellsouth.net
To: "Lalena Fayre" <lalenas at gmail.com>,"Blindkid email"
    <blindkid at nfbnet.org>
Subject: Re: [blindkid] More than just blindness
Message-ID:
    <1538000612-1404139893-cardhu_decombobulator_blackberry.rim.net-1774690738- at b17.c4.bise6.blackberry>

Content-Type: text/plain

You are not alone. My son also has delays not related to blindness. Of everything, communication was and is our primary concern because that's how you connect with others and that's how you learn. At 9, our son's communication has vastly improved. He understands (and actually follows) directions. He listens to short conversations and he is able to participate in short exchanges on topics of his choosing. He also is able to communicate his needs. 

We have arrived at our current parenting and learning philosophy/standards/practices through a variety of support groups including this one that has encouraged us not to allow our son to be limited from doing things just because he is blind. What most clicked everything into place for our current way of doing things was when a therapist introduced me to the work of Dr. James D. MacDonald of Ohio State University who has a drastically different approach to helping a child learn to speak than other things we tried. He published a book called Communicating Partners and then Play to Talk and he has a website with additional resources as well as a yahoo group that he directly participates in. 

When we began to see ourselves as our son's communicating partners and that we had to get into his world before he could join ours everything changed. I highly recommend his materials.

You mentioned looking for social opportunities for your son. As tiring as it can sometimes be, my husband and I remain our 9 year olds best playmates. Other children as big as he is are far more advanced than he is in their social skills. Children at his social skill level are far too small for him to play with unsupervised. I continue to trust that this will change as he continues to develop and also remind myself that when he is more ready to be out in the world with others, he will continue to have a strong attachment to our family. Far too many small children don't even have that these days. 

Good luck in your hunt for support!

I hope that I've given you some hope and consolation that you are not alone.

Marie

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

Message: 3
Date: Mon, 30 Jun 2014 12:18:44 -0400
From: Marianne Denning <marianne at denningweb.com>
To: Lalena Fayre <lalenas at gmail.com>, "Blind Kid Mailing List,    (for
    parents of blind children)" <blindkid at nfbnet.org>
Subject: Re: [blindkid] More than just blindness
Message-ID:
    <CANZu-JhF_wFwPRF66ByV-staGM2PZ8TjpzABHamkW6bT1pw5kw at mail.gmail.com>
Content-Type: text/plain; charset=UTF-8

According to information I have read, between 60 and 75% of blind
children have additional disabilities.  Since the overall numbers of
blind students is extremely low, finding other children with
additional disabilities similar to your child's may be a challenge.  I
love working with students with additional challenges.  I hope we
include all children in our activities.  If we exclude any child or
adult are we any different than the general population who exclude us
because we are blind?

On 6/30/14, Lalena Fayre via blindkid <blindkid at nfbnet.org> wrote:
> As I read through my latest issue of Future Reflections, I was struck with
> a further sense of isolation. The same holds true when I read this listserv
> and review the agenda of the upcoming national conference.
>
> My son is totally blind with multiple other disabilities - nonverbal and
> global developmental delays that impact every area. I'm fortunate to have a
> good foundation and understanding of blindness education. But when you add
> the other issues to the blindness, one is struck with how much blindness
> complicates things. For example, typical adaptive communication devices are
> vision based. Another, pre-Braille work is important but after 3 years of
> it and no significant progress made, you are forced to deal with functional
> skill development which the therapist don't know how to do with a blind
> child, let allow a blind cognitively delayed child.
>
> I turn to the NFB for support and resources, yet publications are full of
> typically developed children who happen to be blind. I call my local
> organizations here in the bay area (which I know are inline with NFB
> philosophy) looking for social opportunities for my son, but he can't
> participate because of his developmental delays.
>
> At the end of the day I'm left wondering......am I the only parent of a
> child with multiple disabilities, developmental delays, AND blindness? Are
> the majority of blind child typically developed? And where do I turn for a
> network of parents who may understand?
> _______________________________________________
> blindkid mailing list
> blindkid at nfbnet.org
> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> blindkid:
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/marianne%40denningweb.com
>

-- 
Marianne Denning, TVI, MA
Teacher of students who are blind or visually impaired
(513) 607-6053

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

Message: 4
Date: Mon, 30 Jun 2014 13:45:09 -0400
From: Carol Castellano <carol_castellano at verizon.net>
To: Lalena Fayre <lalenas at gmail.com>, "Blind Kid Mailing List,    \(for
    parents of blind children\)" <blindkid at nfbnet.org>
Subject: Re: [blindkid] More than just blindness
Message-ID: <315314.15968.bm at smtp120.sbc.mail.bf1.yahoo.com>
Content-Type: text/plain; charset="us-ascii"; format=flowed

Hi Lalena,

My heart goes out to you and to any parent feeling isolated while 
doing such a hard job.  You and your child are welcome here.  We are 
here for you, too, and want to hear your challenges and triumphs and 
ideas, and give you support, information, ideas, and love.

As someone mentioned, most statistics say that about two-thirds of 
blind/VI kids have additional disabilities (about one-third moderate 
and about one-third severe), so there are MANY of us out here who 
know and understand.  In fact, we usually have board members both on 
our national  board and on the state boards who are parents of MD 
children.  As someone also mentioned, there are not that many of us 
around--families with blind kids of any kind--so sometimes we have to 
reach out beyond our own community or even state to find experienced 
parents and support.

In NOPBC we work hard to be there for ALL parents of BVI kids--from 
babies to college age, from low vision to totally blind, from just 
plain blind to severe multiple disabilities.  We do care and we do 
understand.  For example, in the packet for this year's conference 
registration we have an article by a parent of a totally blind little 
child and one by the mom of a multiply disabled teen.  In our 
workshop lineup, we try hard to have a workshop in every session that 
would be helpful to those in different categories.  For MD this year 
we have Independent Movement & Travel for Children with Additional 
Disabilities, Hands Off! Honoring the child's right to personal space 
and control over his/her body. Instructor: Carlton Walker, Teacher of 
Blind Students, President, NOPBC, and Saying It My Way, Encouraging 
communication, learning, and play in children with communication 
needs. Instructor: Natalie Shaheen, Director of Education, NFB 
Jernigan Institute.  Of course many of the other workshops would be 
of interest as well.

One of the things we do which I think is really important is assist 
with an approach to education and development--we don't care if a 
child has additional disabilities or not--we will stand shoulder to 
shoulder with the parent to insist that every door stays open for 
that child, that the child gets an appropriate education, and that 
the child is allowed and enabled to develop a sense of control over 
his life, to whatever degree he/she can.

Please do share your questions and ideas with us--on this listserv, 
on our FB page, or through ideas for articles and workshops.  We 
would welcome your input.  I am glad you wrote and hope that we get 
to meet one day.

Warm wishes,
Carol

Carol Castellano
Parents of Blind Children-NJ
Director of Programs
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.blindchildren.org
www.nfb.org/parents-and-teachers

At 10:19 AM 6/30/2014, you wrote:
>As I read through my latest issue of Future Reflections, I was struck with
>a further sense of isolation. The same holds true when I read this listserv
>and review the agenda of the upcoming national conference.
>
>My son is totally blind with multiple other disabilities - nonverbal and
>global developmental delays that impact every area. I'm fortunate to have a
>good foundation and understanding of blindness education. But when you add
>the other issues to the blindness, one is struck with how much blindness
>complicates things. For example, typical adaptive communication devices are
>vision based. Another, pre-Braille work is important but after 3 years of
>it and no significant progress made, you are forced to deal with functional
>skill development which the therapist don't know how to do with a blind
>child, let allow a blind cognitively delayed child.
>
>I turn to the NFB for support and resources, yet publications are full of
>typically developed children who happen to be blind. I call my local
>organizations here in the bay area (which I know are inline with NFB
>philosophy) looking for social opportunities for my son, but he can't
>participate because of his developmental delays.
>
>At the end of the day I'm left wondering......am I the only parent of a
>child with multiple disabilities, developmental delays, AND blindness? Are
>the majority of blind child typically developed? And where do I turn for a
>network of parents who may understand?
>_______________________________________________
>blindkid mailing list
>blindkid at nfbnet.org
>http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>To unsubscribe, change your list options or get your account info 
>for blindkid:
>http://nfbnet.org/mailman/options/blindkid_nfbnet.org/blindchildren%40verizon.net

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End of blindkid Digest, Vol 123, Issue 1
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