[blindkid] A Response

Sat Jul 19 02:53:08 UTC 2014

Hi Lalena

I believe that your concerns were heard for the most part and some are willing to discuss it.
I never saw anything banned here, but Carlton did seem to want to redirect the conversation in a positive manner.
This group is mostly volunteers and parents as well with lives.
I’m not so sure you can gather all the info you need from NOPBC. This group is like peers helping peers; or in your case here, parents to parents.
Its not a group of professional experts. I suggest you turn to your school system for such expert advice.
Many schools for the blind have teachers of the vision impaired, TVIS, who work a lot with multiple disabled kids.
Having  him attend a school for the blind year round or at least summer programs
might be a good idea.

I know it must be frustrating and isolating, but NFB’s main focus will be blindness specific concerns. Should common concerns be addressed and advocated for about multiple disabled kids? Certainly. That’s why a 
working group was discussed and probably will form.

I guess I just think while its good to have a sub committee for this purpose, we have to remember and support the broader goals of NFB to be effective. 

As to your question on biking, I believe that’s doable.
He could do it provided he has the coordination to pedal and the ability to follow someone via sound.

I assume by independently, you do not want to go on a tandem.
If not, you can still do something.

You can get him a tricycle; they make adult tricycles now. 
You could also get him a bike with training wheels.

There are tandem tricycles and bicycles if that’s of interest. But the big drawback to this is its so long, a tandem will not fit in your car unless you get one which breaks down. Tandems are a hastle to transport which is why my dad  rarely got out our  tandem which was donated to us by another family with a blind son. 

If you get a regular bike or tricycle, you could simply have someone ride ahead of him and by talking to him, he can follow, or if it’s a short ride and he pedals slowly, you can simply walk with the bike or tricycle.
Direct him verbally either way and you could even attach something which makes noise to the guide’s bike to minimize talking; a bell would work.

Biking is a pretty adaptable activity. you could also get him a stationery bike to practice at home.

Good luck,
ashley
From: Lalena Fayre 
Sent: Wednesday, July 16, 2014 12:47 AM
To: Ashley Bramlett 
Cc: Blind Kid Mailing List, (for parents of blind children) 
Subject: Re: [blindkid] A Response

Hi Ashley
Unfortunately my life as a single parent doesn't give me a great deal of time but of course I will contribute as I can. 

In my eyes a heated discussion is sometimes needed and necessary. To step in and cool the room as if we are bunch of children is disrespectful IMHO.  If we are ever going to understand an opposing viewpoint then we need to be allowed to voice words bluntly. 

I really like your idea of activities like yoga and swimming. He has shown interest in bicycling ad well but I'm not sure quite how to do that independently. He's too big for a typical tricycle and wants that independence. So hmmm......there. that's a specific question. LOL

On Jul 15, 2014 8:13 PM, "Ashley Bramlett" <bookwormahb at earthlink.net> wrote:

  Hi Lalena,

  I think your original post raised some good concerns and possible ideas for action.
  I hope that you can move forward to implement some changes along with those who expressed a willingness and open mindedness to do so.

  Its too bad you felt criticized about it. Your post was definitely respectful. As for Carlton's response, she was addressing the whole group, not just you. Many posts, for instance, can be interpreted as "us" versus "them".
  I think her point was the discussion was getting heated and sometimes unproductive and hinted at toning it down.
  True some may not understand or admit we need to be more inclusive. But that's going to happen in any group. I saw many listers be supportive and those are those to whom you should reach out to.

  I think you have some valid concerns and I understand your reactions. Email is a hard medium to discuss hard and multi fascited issues so understandably your words may be misrepresented. But for all those that do that, there's lots of supportive people.

  I hope you continue to find opportunities for your son and ways he can grow and learn with being blind. You might start him with small groups of kids and maybe one on one recreation where he can be taught hands-on. Activities such as swimming, yoga, running and  tandem cycling come to mind. He might even be able to start with a tricycle.
  As long as he has some receptive language ability and does not mind being touched to learn the skill, I think its doable.
  Good to hear you have a TR program in your area as this should help him stay busy.

  The only thing I disagree with is you disliked the special issue on MD kids. Actually I liked the label because it was several articles grouped addressing MD and was labeled as such, and thus was easy to find. I do not see much wrong with highlighting a topic deserving of special attention; we have an issue on mobility, technology and low vision. One on MD simply highlights a special consideration of blindness just as we all use specialized technology or specialized mobility techniques.
  There are articles sprinkled through the magazine as the editor indicated; just you may easily overlook them due to their labels.

  Anyway, I hope you got some of the support and understanding you needed amidst the negative posts.

  Sincerely,
  Ashley

  -----Original Message----- From: Lalena Fayre via blindkid
  Sent: Tuesday, July 15, 2014 8:49 PM
  To: blindkid at nfbnet.org
  Subject: [blindkid] A Response

  Because I was criticized for not providing an appropriate new title to my
  message so it would make sense, I just decided to create a new message.
  Anything to lessen combativeness is appropriate.

  I want to point out a few things first.

  1. I have never said I have anything against successful blind people. Quite
  the contrary. I was married to a successful blind person for 13 years. I
  have met many successful blind people. I have absolutely nothing against a
  successful person.

  2. I don't think it's easy for the average person who has little knowledge
  of the blind to raise a "vanilla blind" child. Again, quite the contrary. I
  went into the adoption of my blind, MD son with no fear of blindness and
  few of the fears of him not being successful due to his blindness. In the
  school district I really encourage parents with a low-vision or blind child
  with positive philosophy. But I also understand that it's a grieving
  process that most parent's go through. But don't think that some how I
  believe you have it "easy". It's different, not easy.

  The whole reason I wrote original isn't about getting specific help for my
  son. There is no burning question that I have regarding him. If there was I
  would ask the specific questions that I wanted help with. The whole reason
  I wrote was multifold:

  1. to point out that I don't see stories of kids like mine, who are blind
  with multiple disabilities. Yes, I read the special edition of Future
  Reflections with much interest. I lamented that these types of articles
  weren't sprinkled through out various editions. By making it a special
  edition it makes it seem like blind child with other disabilities are the
  minority when they aren't.

  2. to point out how the voices of the blind/MD parents are quieter and
  perhaps someone else feels as I do that no one else understands the sheer
  strengthen, challenge, and difficulty we face in not only racing a blind
  child (which is a challenge in and of itself) but a child with a scale from
  mild to severe other disabilities.

  3. to point out that as an organization we need to be aware of the weakest
  among us so we can work to strengthen us all.

  When I read through Carlton's response I felt like I honestly don't really
  know how to communicate. Why? Well, let me break it down....

  ----- 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.)
  -----

  Thus the reason I wrote my email. It was respectful but obviously it's been
  interpreted as lashing out and thus, that warrants the defensive feelings
  I've received.

  ------ The most concerning portion of this communication, to my mind, has
  been the “us-versus-them” tone some of the conversations have taken. -----
  Perhaps it is the form, my poor choice of language, or some other factor
  but I never say this is an "us-versus-them". As I said earlier, one group
  doesn't have it easier than the other. However, it is different. And when
  the organization focuses predominantly on one over the other, that causes
  the "us-versus-them" attitude. When the issues of blind, MD-families
  warrants a "special" issue of Future Reflections, that sends the message
  that "these" are different than "us". We should be talking about all
  families. When an article is written by an expert, ask them to focus a 2-4
  paragraphs on the blind/MD-child or the blind-only child. This shows that
  both are considered.

  ---- Apparently, some have criticized that my workshop, “Hands Off!” could
  be useful for all parents of all blind children. Exactly. That’s the idea.
  -----
  Yes, that is the idea. I wish the reverse could have been said for the
  non-blind/MD track. I've sit in countless workshops where the information
  is great but inapplicable to children with multiple disabilities. I've
  point blank asked how this technique could be adapted to suit all children,
  few have had answered. So in essence when I look at the workshops, I have
  to evaluate the like hood that this would be relevant to my child or if the
  speaker could answer questions about adaption.

  Being hand's off is very important. You are right children are over-handled
  by adults and this is an issue that should be addressed particularly with
  "vanilla blind" children. But SOMETIMES MD-blind children need to have more
  handling by adults in order to be successful. Was this addressed in the
  seminar?

  ---- 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.

  I used the phrase "victim blaming" because many of the responses to my
  pointing out some of the areas that the NOPBC needs to shed more light on
  was that I should do it. It is my responsibility as a parent to a MD/blind
  child to create this focus within the NOPBC/NFB. This is removing any
  responsibility that the organization has to use their many resources and
  the wealth of professionals and street-proven parents, to give families who
  are struggling  a hand up. The message was very clearly that it is MY
  responsibility to lead the organization into this focus. THAT is victim
  blaming.

  Also, I was then criticized because I have been an advocate for my son. I
  have used the knowledge and positive philosophy I have earned through my
  years in the NFB to encourage Braille exposure, even if he doesn't have the
  cognitive ability at this point to learn Braille, to have a white cane, to
  have an evaluation by the State blind school, to request that that team do
  a training for the remainder of his team, all of these things. The attitude
  was - well, you don't have any problems so what are you complaining
  about. I'm complaining because I know that not every family on this list
  who is facing raising a child who is blind or MD/blind has the gumption to
  say - "hey I need some support here."

  The fact is I've been around the NFB awhile. I've seen the politics. I've
  seen the hushing of people who speak too loudly. I read through the many
  responses that misrepresented or misconstrued my words. And it just saddens
  me. Because the group of people who should understand are too busy with
  pride to express that maybe some things need to change.
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