[blindkid] Focus on the children

[Barbara HAMMEL]

Carlton, one thing I'm very glad you addressed here is "age-appropriate". The rest of the world tells us that age-appropriate is what your child should be doing at their chronological age. In other words, if your child is 12 you should stop watching pre-school level shows because no 12-year-old is doing that. However, your definition says that if the child is 12 and functions at a pre-school level it is okay to still be watching those shows. Am I correct? It's not his blindness that's keeping him at pre-school level, it's his other disabilities. However if that same 12-year-old who likes Sesame Street or Blues Clues but he's a just "vanilla blind" kid, you should be pushing him to watch what his peers are watching because his babyish habit makes him stick out.
So, those of us with blind, multipli-disabled children are held up to that "age-appropriate" beast, we need to remember that their blindness should not keep them back but their other disabilities do. Because when you get down to it, despite what many teachers who've not had a blind child think, blindness is really the least of their problems except that it interferes with the visual-learning process of deafness and autism.
I can definitely say that while my children fit in neither group well, they are more accepted and understood in the blind community.

Barbara

Sent from my iPhone

> On Jul 14, 2014, at 8:16 PM, "Carlton Anne Cook Walker via blindkid" <blindkid at nfbnet.org> wrote:
> 
> Hello,
> 
> 
> 
> I am still recovering from the rigors of Convention and the travels
> connected thereto. Nevertheless, I take this opportunity to address the
> recent communication on the BlindKid listserv dealing with children with
> visual impairment, including blindness, and additional disabilities.
> 
> 
> 
> ABOUT THE NOPBC and the NFB
> 
>          The National Organization of Parents of Blind Children (NOPBC), a
> proud division of the National Federation of the Blind (NFB), is a
> grass-roots, membership organization. We are a family. Like all families,
> we will disagree, and sometimes messily. But, like all families, we are
> bound by love. Unlike the traditional “pie” view of the world (where a
> larger piece for you means a smaller piece for me), families operate on an
> entirely different economic system. As a parent, does your love for one
> child diminish upon the arrival of another? Of course not. That’s because
> families operate on the economy of love. Love is not diminished by more
> receiving it – in fact, it is deepened and enriched. While the older
> siblings may feel displaced initially, the family unit thrives when more
> are added. And, as with families, the NOPBC and the NFB become greater with
> every addition to the family.
> 
>          Of course, just as in families, individuals may sometimes feel
> left out. This hurts us all. Even if the individual feeling displaced hides
> these feelings, hurt, anger, and fear are cancers that erode the health of
> the family. Instead of hiding the hurt, we need to share these feelings –
> in as respectful a manner as possible. (Lashing out is not a fatal act, but
> it can cause others to feel defensive and end up slowing the healing we
> seek.) As President of the NOPBC, I welcome input from all – including
> those not yet in our family. I, like other members of the NFB and the
> NOPBC, am dedicated to providing parents the information, training, and
> support they need to help their blind children live the lives they want.
> 
> 
> 
> WE ARE INDIVIDUALS AND WE ARE ONE
> 
>          The most concerning portion of this communication, to my mind,
> has been the “us-versus-them” tone some of the conversations have taken. I
> find this to be quite unfortunate and not very helpful. We each undertake
> our own journeys on this road of life. It is far too easy to look at the
> current path of a fellow traveler and feel jealousy or anger that that
> traveler’s path seems so easy. Of course, the paths we see are just a
> sliver of reality. We have no idea about the actual travails others have
> faced.
> 
> And, come to think of it, it doesn’t matter. Our paths are our own. The
> ease (or difficulty) of another person’s journey has no direct bearing on
> our own. My daughter’s blindness does not depend on anyone else. My
> daughter’s other academic and health concerns are neither ameliorated nor
> exacerbated by any other child’s health or academic achievements or
> struggles. Life is not a pie from which there is a fixed amount of
> opportunity.
> 
> Each of our children is an individual – a remarkable gift to this world.
> Each of us is the parent of a blind child – that’s why we’re here. Both the
> NOPBC and the NFB value each of our children as an individual and as a
> blind child. Infighting among us and erecting subjective barriers between
> ourselves serve no useful purpose. They does not increase our knowledge or
> improve our children’s lives. Thus, I respectfully submit that such action
> be avoided. Instead, let us collaborate regarding our similarities and
> celebrate the unique qualities of each of our children. Let us work
> together to raise all expectations and enable our children to be defined as
> the individuals that they are – not the disability(ies) they might possess.
> 
> 
> 
> DEFINING “AGE-APPROPRIATE” and “INDEPENDENCE”
> 
>          I have another concern with regard to the conversation that has
> occurred. It appears to me that some have taken away a different definition
> of “age-appropriate” and “independence” than I have encountered during my
> tenure with the NOPBC and the NFB. In contrast to the descriptions that
> have been proffered, I always understood these terms to be defined in terms
> of the individual child.
> 
> In fact, the words that echo in my mind are those from Dr. Ruby Ryles”
> seminal article, *Is Your Child Age-appropriate?*, “Very simply,
> ‘age-appropriate’ just means that your child is doing the things at the
> same age as he or she would have done them as a sighted child.” In other
> words, “age-appropriate” is a child-centered term and simply focuses upon
> ameliorating the adverse impact of blindness upon a child’s development.
> Another term, coined by Carol Castellano and Joe Cutter decades ago seems
> apropos: “Age- or Stage-appropriate. (Please note that this is how I define
> my services in the educational realm: “I seek to ameliorate the adverse
> impact of visual impairment, including blindness, upon my students’
> academic and functional achievement.”) Nowhere in this definition does it
> appear that a child with multiple disabilities must act as if s/he were
> typically developing. Instead, we simply do not accept that blindness, in
> and of itself, MUST delay a child’s (any child’s) development.
> 
> Similarly, I have always understood “independence” as being child-centered.
> When I work with my students with multiple disabilities, including
> blindness, I have no difficulty providing necessary accommodations and/or
> modifications based upon the child’s current needs. While I strive to help
> my students develop skills of independence, I am fully willing to accept
> that some of these accommodations/modifications may not be able to be
> faded. However, I am always providing my students emotionally-safe
> opportunities to grow and lessen or fade accommodations that are no longer
> necessary. The NFB’s message of independence has informed this portion of
> my instruction, and each of my students has benefitted therefrom. (Please
> note that, when necessitated by medical or other concerns, I am quite ready
> to add accommodations/modifications – I am simply unwilling to allow my
> students to be smothered by them.) Perhaps a better term would be
> “autonomy.” The necessity for assistance, itself, is not an indication of a
> lack of independence or autonomy. The necessity for assistance because the
> student has not been offered the opportunity for more independence (and/or
> the opportunity to be in charge of the level of assistance provided --
> autonomy) is often an indication that the student has not been offered the
> opportunity to maximize his/her independence.
> 
> 
> 
> WORKSHOP OFFERINGS
> 
>          As noted earlier, the NOPBC Conference, Taking the Next Step,
> offered a “track” (three workshops, one in each of the three concurrent
> workshop sessions) for parents of students with multiple disabilities,
> including blindness/visual impairment. These were as follows:
> 
> *Independent Movement & Travel for Children with Additional Disabilities *
> 
> *Working toward maximum independence and self-determination for the child
> with additional disabilities. *
> 
> *Instructor: Denise Mackenstadt, NOMC*
> 
> 
> 
> *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*
> 
> 
> 
> *Saying It My Way*
> 
> *Encouraging communication, learning, and play in children with
> communication needs. *
> 
> *Instructor: Natalie Shaheen, Director of Education, NFB Jernigan Institute*
> 
> Apparently, some have criticized that my workshop, “Hands Off!” could be
> useful for all parents of all blind children. Exactly. That’s the idea. I
> can assure you that the workshop was focused upon students with multiple
> disabilities, including blindness/visual impairment, but I believe it
> contained valuable information for all parents of blind children. Too
> often, all of our children are over-handled by adults in their lives –
> sometimes with tragic results. The other two sessions listed, while also
> geared toward children with multiple disabilities, including
> blindness/visual impairment, contained valuable information for all parents
> of blind children, regardless of the child’s abilities. Similarly, most of
> the other sessions, while geared toward children whose primary disability
> is visual impairment, including blindness, would be useful for ALL parents
> of blind children, regardless of the presence of additional disabilities.
> 
> Each year, our Conference offers workshops geared toward parents of blind
> children of various abilities and ages, and we will continue to offer them.
> None of these workshops can provide all the needs for any family. However,
> each workshop will likely provide nuggets of information (or spark new ways
> of considering a problem) that many families will find valuable. I, myself,
> often find great benefit from attending those workshops that do not appear,
> at first glance, to be geared toward my daughter’s needs.
> 
> 
> 
> THE FUTURE
> 
>          Please note that the NOPBC is committed to continuing to offer
> workshops geared toward parents of children with multiple disabilities,
> including blindness/visual impairment. This commitment has been
> longstanding, and it will not waver. Our ability to improve in this area
> will be strengthened by a frank, constructive collaboration with parents of
> children with multiple disabilities, including blindness/visual impairment.
> 
> Please do not accuse me of “victim blaming” because we have shown our
> commitment in this regard for many years. Instead, I take this opportunity
> to formally and wholeheartedly invite parents of children with multiple
> disabilities, including blindness/visual impairment, to join our grassroots
> NOPBC and NFB organizations and help us to provide the information,
> training, and support geared toward your needs.
> 
>          I am excited to see several parents answer the call for articles
> made by *Future Reflections* editor Debbie Kent Stein. I fully support the
> idea of a working group, and I ask to be included in it.
> 
> 
> 
> Please let us now come together as the family that we are. Let us speak
> frankly and honestly, but let us do so in a kind manner. Let us covenant to
> communicate our concerns promptly and as objectively as possible. Let us
> all work toward our common goal of preparing our children to live the lives
> they want!
> 
> 
> 
> 
> 
> 
> 
> Thank you,
> 
> 
> 
> Carlton
> 
> 
> 
> -- 
> Carlton Anne Cook Walker
> Attorney at Law
> President, National Organization of Parents of Blind Children
> Teacher of Students with Blindness/Visual Impairment
> 105 Creamery Road
> Boiling Springs, PA   17007
> Voice: 717-658-9894
> Twitter: braillemom
> 
> 
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