[blindkid] more than just blindness blindkid Digest, Vol 123, Issue 9

[Ashley Bramlett]

Hi Lalena,
I hope the subject line will make this more clear, the subject line you used originally.

I’m not sure what to say. Just be aware that you are not the only parent feeling alone.
NFB’s focus is on just blindness and I suspect this may slowly change as more and more people come into the organization with multiple disabilities. 
Did you know that some blind students on nabs lists are expressing frustration as well that their other disabilities
are hindering their pursuits of college and/or other life goals?
There is talk of forming an interest group of multiple disabled individuals.
Several students expressed concerns over their mental health challenges and someone said it would be good for a crisis line to be set up for discussing such issues.
So, coincidently, there has been this talk amongsts some nabsters as well.

So, I think both blind students and parents are beginning to recognize this issue. We have a new nfb president, so who knows what the future holds for the organization?

Now a days its more common where as in the 1950s you had just blind babies.

Therapeutic rec programs don’t know how to work with blind kids, true. I’m helping at a tr camp
now and there’s one blind kid with multiple disabilities; he is in a wheel chair among other things. You do the best you can to educate.
I don’t know of any therapeutics rec program run by a blind organization in the SF Bay area.
I assume you mean SF Bay CA.

There are a number of agencies in Ca if that’s where you live, but I don’t know to what extent they accommodate someone in his situation.
Try camp bloomfield or enchanted hills camp. Also the Hatlen Center for the blind which is a living skills program may have some resources.
Their site is www.hcblind.org.

As for the attitude of super independence, I feel that and that’s what dad felt; you don’t have to be a parent of a multiple disabled kid to see that.
All I’ll say is that I doubt its intensional; they just want to project a positive can do attitude so we can change society.
Out of the ordinary people get the public’s attention, I suppose, so they look for that type to do
outreach and convention speeches.

For instance, I want to go into a field in the office that’s non technical, communications area probably or maybe even outreach but that may involve grad school.
All we run into is technical employed adults like IT and computer programmers.
Additionally, the other common occupation is lawyers. The other common one around here, due to our proximity to the capitol, is 
government employees such as contract specialists and Section 508 coordinators or testers, and program analysts.

All to say is you don’t always find your help so easily.

Just know that you will have a happy and growing kid with a parent like you. Independence can mean various things to different people.
Don’t try to apply the same standard to him and feel bad. Instead, compare him to himself to ensure he makes progress; you could also see other kids without blindness that have his disability. See how they are progressing and functioning.

Finally, you had a few concerns. communication and long term support.
For communication, use objects he can hand to you. If he is able to type, he could type out messages later on.
I’m wondering if he can reach for things. Maybe pointing to what he wants/needs might work. I think there’s a communication device out there for nonvisual use. I’ll look around if you want.
As you know pictures are most often used for communication. he can use objects and tactile pictures.

For long term support and care, a group home may be your best option. I know of a few blind people in group homes who used to play beep ball with me. If he grows and develops enough to perform basic things like walking, toileting, and dressing, he might be okay with a personal care attendant and could live with roommates or other family members.

You might also look into setting up a special needs trust if your finances allow this.
You could also have a brother, sister, or relative be in charge of giving him monthly money once you’re not around.
The special needs trust allows you to set aside money and still let your adult child have SSI.
You appoint a trustee for the account. No money in this trust goes directly to the disabled child. Instead, it is used to
buy goods and services the child needs. This can include Personal care attendant, PCA services; as well as  vehicles, recreation, education, and medical equipment.
Another option is a pooled trust. Consult your attorney for leaving assets and money for him.
There’s probably other long term care ideas I don’t know of. Talk with other parents of developmental disabilities.
See this for information on trusts.
http://www.nolo.com/legal-encyclopedia/special-needs-trusts-30315.html
http://www.nsnn.com/frequently.htm

I hope you find a good fit for your son. Check out best buddies.
I suspect no blindness organization accomodates severe disabilities because there’s so few; as you say they will
accommodate mild disabilities. Maybe inviting a few other developmental disabled kids to your home to play would be good. It would be a small group in a familiar setting.
I’m also thinking that something like music therapy may be helpful.
Also activities for movement; I think lilly neilson’s ideas are great. not sure the spelling exactly though.
See http://www.pathstoliteracy.org/lilli-nielsen-and-active-learning to see her ideas and explanation of the “little room”.

HTH,
Ashley

From: Lalena Fayre 
Sent: Sunday, July 13, 2014 6:51 PM
To: Ashley Bramlett 
Cc: Blind Kid Mailing List,(for parents of blind children) 
Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9


Ashley - 
I couldn't agree more with your day. The workshops and focus of the NFB is on the bright stars who go on to university and graduate school. I know some of that is necessary because some blind people would never see a highly educated, professionally successful blind person in their life. But I think they go over board and that attitude is spilling over to the NOPBC.

I'm all for self-advocacy as well as demanding accessibility and accommodations, BUT too often the attitude is that this accessibility and accommodations MUST result in total independent access. If things like a visual guide or visual assistance is provided then it's a failure. Worse the person who lacks the skills is seen as less successful as well. It's like if you can't walk through the airport without visual assistance you aren't a fully independent blind person. This attitude drives me nuts. 

When this attitude is applied to a parent/child situation it's so painful. I'm all for children being age appropriately independent but if a child can't be then visual guide and/or assistance should be provided and the child and parent shouldn't be looked down upon if they need this. Full integration isn't always possible for some mild to severe disability children who happen to be blind. 

My son does have severe disabilities for sure. I often say if he was just blind this would be a cake walk. LOL He is biologically now 11 and is developing at his own pace which is currently about 3 (but will change as he grows). The city I live has a specialized recreation program for developmentally delayed individuals. He does go to this in the summer but the challenge there is the counselors don't know how to work with a blind child. The good news is they are willing to be educated and quickly learn that blindness doesn't hold him back. 

I would like to find a therapeutic rec program run by one of the blind organizations around here. (I live in the SF Bay Area). They are great for blind and mild developmental disabilities. But can't accommodate more modertate to severe disabilities. As other parents have said, I have to pick and choose where my son can participate. I really do wish there were more opportunities for him to be involved in programming for Blind kids. But as you've said, that's for the superstars. 
Lalena 

On Sat, Jul 12, 2014 at 10:44 PM, Ashley Bramlett <bookwormahb at earthlink.net> wrote:

  Lalena,
  I'm sorry to hear you feel so isolated. As I said, I do agree nfb needs to address multiple disabilities more. I agree all the focus is on normal developing kids.
  I'm actually the child and my parents are the parents, btw.
  My dad also felt not all needs were addressed. And, no I have no other diagnosis, but we feel I'm LD in some respects and spatial deficits are here too.

  I've been lucky to graduate college given the rampant inaccessibility of software these days.

  My dad felt and still feels that NFb only has workshops for the bright stars who go to college and often grad school.
  Its as if blind kids have to do all this stuff and make straight A's to be normal.
  What about the kids who are lucky to make it through community college? NFb has no place for them, but some cannot, due to a variety of reasons ranging from academic deficits to advocacy skills to blindness deficits to simply failure to be accomodated.
  I know some kids who only got through community college, and no they're not nfb.

  Where will these kids, now adults, find jobs? its as if the organization does not care.

  Not everyone can get a grad degree and be a professional. Not everyone is cut to be a lawyer, teacher, It professional, or counselor.
  And I could rant about the inaccessibility of entry level employment but I won't. If you even get that BA degree, you will find most entry level jobs are too visual like scheduling appointments is often not doable do to the software issues.

  Those kids who are the bright students tend to stay in NFB and be leaders in nabs.
  But, if you are below average, the organization does not have a place; not as a kid or adult.

  Laleana as for your specific situation, it sounds like a severe case. He acts 3 and he is 11 you say.
  Is there any recreation for kids with disabilities in your area? its called therapeutic recreation. we have a TR division where I live.
  They should have some activities he can do. You also might find a mentor for him through Best Buddies.
  In terms of socializing, I'm not sure as most kids will not play with a child who acts much younger.
  My only thought is to get him to play with other kids with disabilities if possible. For instance high functioning autistic kids might be a  good fit. I know some of them. they tend to do things a little slower and may be receptive to playing with him.

  All blind and low vision kids struggle with socialization; I had few friends growing up.
  I certainly cannot imagine  what its like for you and your son.

  HTH, 

  Ashley
  -----Original Message----- From: Lalena Fayre via blindkid

  Sent: Saturday, July 12, 2014 7:01 PM
  To: Blind Kid Mailing List,(for parents of blind children)
  Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9 


  First I have to admit, I'm struggling with how to reply to individual
  messages that posted on this list. So any tips on how to do that is great!

  At first I was going to let most of the well-intended messages slide by. I
  didn't want to explain in detail why many of the suggestions and thoughts
  are just wrong. Worse some of the responses were just so inaccurate about
  how the national organization responds. But with Barbara's response in
  particular (and many of you who sent me private messages) I just have to
  respond more.

  So my son has no visual acuity. He is totally blind. He was adopted at the
  age of 5. At that time he had a development level of a 3-6 month old
  children. We knew of his blindness and due to my ex being blind, our
  experience in NFB, my ex working at CCB, attending multiple conventions,
  etc, I had few fears of his blindness and didn't have the misconception
  that blindness would hold him back in any way.

  I agree that for some families it is very possible for a school district to
  discriminate against blind children and even more so against multiple
  handicap children who are also blind. This hasn't been the case with my
  son. He is in a Braille enriched environment. I wouldn't allow him to be
  otherwise.  I wanted my son to "play" with the Perkins brailler. I wanted
  him to use the old Library of Congress tape recorders. I wanted him to have
  a cane. So I am not going to jump on the NFB bandwagon that of course the
  educational system is against blind children and keeping them illiterate.
  And honestly that has nothing at all to do with my original post.

  My post is about the programs of the NOPBC and the NFB. My post is about
  the shadow the MAJORITY of multiple handicap blind children are kept in by
  the very advocacy group that should be shining a light on them. As multiple
  people have stated, the MAJORITY of blind children now have multiple
  handicaps yet as I said the majority of programs, conference seminars,
  conference child care, etc. is geared toward fully functioning blind
  children. I'm not saying that there is no benefit to the general seminars.
  But I can't tell you how frustrating it is to sit in a seminar about your
  child going to college, or increasing age appropriate independent travel,
  etc.. I might as well sit there and cry feeling as if no one understands
  what it's like to have an 11 year old who is developmentally 3. Where are
  seminars on long-term care for your child? Finding places where your
  heavily disabled child can have independence? Things along those lines.

  And I hear the response - the NOPBC is a volunteer group, start your own
  group, start your own activities, etc. But talk about victim blaming. I
  throw my hands up in exasperation because how in the world can I find time
  to do that when I need to provide 24-hour care for my child? How can I
  start another branch of NOPBC when I'm dealing with life as a parent to a
  11 year old who is developmentally 3?

  I love my son and I advocate for my son like no one's business. I have
  barked up many trees and been the squeakiest wheel possible, and it's
  worked. There are strides that have been made but the social isolation is
  what kills me the most. It is that need to belong and feel as if I have
  people in my corner who understand what it's like on a daily basis.

  I don't want the stares or the "tsk tsk" response when I ask for 1:1
  assistance for my son to participate in activities to the best of his
  ability. I don't want someone to tell me that I should have my son in a
  quiet corner when he needs it but basically be ignored the rest of the
  time. I don't want the stares when I go to a NFB or NOPBC convention. I
  don't want my son to be looked down upon because he isn't a fully
  independent blind child. I don't want to hear the gasps when I ask if he
  can have 1:1 supervision and hand-over-hand assistance. I don't want to be
  lectured as if it's my attitude or lack of Foundation philosophy that is
  the problem. I don't want to be treated as if I'm just another "sighty"
  parent who doesn't understand blindness and thinks that blind people should
  be coddled.

  All of these things are wrong. Totally wrong. But based upon past
  experience and reading the organization's materials, the problem isn't that
  there is a blind spot (forgive the pun) in the organization, it's that
  there is a problem with me.

  I feel empowered that I'm not alone. That I'm not the only parent of a
  multi-disable blind child who has felt this scorn. And I don't think the
  solution is to just leave and make your own organization, I think the
  solution is for the national office to focus on issues of multiple
  disabilities and blindness.

  I'm sure I've angered some of you. Seemed like a ranting lunatic but well,
  I'm human and I hope that my rant might just dislodge this notion that I'm
  not educated on philosophy, unaware that this is a volunteer organization,
  or haven't read enough books yet.

  Peace and love.