New York Support Group

There is the Brain Injury Association of NYS. They are quite useless in my opinion and they play politics and exist so the jokers running it can scam. Non profits are indeed very profitable. If you start a group I’d suggest that you open it only to LDs and their families otherwise you’ll get scammers with agendas. A big scam in our area is RCIL. They are friendlier than VESID but are essentially a do nothing machine. Start your own group that does advocacy. Support groups support whining and keep people victims “boo hoo we’re gettin screwed” What is needed is a group that will kick ass and take names and strike fear in the hearts of our enemies.

Ball,

Would you like to start one with me?

Lyn, Perhaps, but I’d be happy to advise you. I’m in CNY but am moving out of state in the Fall. Email me. Starting a group is easy. but starting a successful group requires proper planning Determining the scope and mission of the group schedules members agenda structure ect… I’d start by finding several motivated parents and together write a mission statement that defines the group. Then find a meeting place like a hospital public library or church. See what happens and get input from the new members. Collect some funds for your operating costs. Compile a mailing list and in time try to get a grant so your group can get into advocacy. I’ll tell you more later. Ball

Lyn:
We live in Nassau County and have a 19 year old with LD. We
think a support group is a very good idea for the exchange of
knowlege and ideas. It is difficult to know whether or not we are
getting the full range of services possible for our son, because
most of the so called counselors have no clue.
Hope to hear from you,
Norman

I wonder if you were to ask a “counselor” some LD questions and when you’ve exposed their incompetence you then dictate to them how things are going to be. Invite them to a support group and have the group come down on them with both feet.

Hi Lyn,

I too am interested in starting a support group; I am in NYC and I do not see much in the way of support groups for adults with Learning Disabilities. I am 28 years of age and was diagnosed when I was five. As I have learned, NYC is a tough place for any adult with a learning disability, especially if you have one that is not “trendy” like dyslexia or ADD. I just have visual spatial motor related ld problems, have problems organizing things, problems relating to that. What we need in this area is an advocacy group we need to change the way people think, the way things are done around here. If you are interested email me.

Hi AA,

Do you have any ideas how we could all get things to change? For that matter, does anyone have any ideas on how to make things change?

As for myself, I just naively assumed that since I didn’t know of any other adults with learning disabilities, that maybe I was the only person feeling what I felt and going through what I was going through. Exactly- I feel the way you do, the time is now, I can’t wait for things to play catch-up, my time is now, not later. I can’t wait ten years for things to happen, and if I wait then they will never happen.

Ld ADD ADHD I believe all have a simalar cause. Dyslexia I believe is caused chiefly by cerebral-vestibular dysfunction but it has other causes. With that said I think a support group should be inclusive of all those who have a brain dysfunction that effects learning and cognition. The more the merrier or gloomier wich ever the case may be but the group should not just be a forum to piss and moan “woe is we” The group should be there for support, education and advocacy. We know that the schools suck and we know how tough our lives can be. The question now is; What are we going to do about it? Be creative. Be bold.

ball-

hey i totally agree with you, it should be for anyone with a brain related sort of disability, dyslexics, add, everyone should unite together, i don’t want this to be some segregated thing. i’ve been to a couple of dyslexic related support groups and frankly was a bit put off by the whole thing of it, now this was years ago eight, nine years ago, maybe i got the wrong impression i don’t know but you know how they say that first impressions stick with you…anyway, i want this to be a whole gathering of people with brain related disabilities, add, ld, dyslexia, dyscalculia, what have you. i am going to be gone til early next week, but when i get back i have a ton of ideas on like make a list of everything that needs to be done. i need everyone’s input, so please i would love to hear from you, i want to start getting word of mouth things going by july at the latest, late june, end of next week at the earliest. if anyone else has any suggestions i would love to hear them. actually part of what i envision is a support system in which we try to advocate and make changes in the way the new york system is run(not sure yet how to do that, but getting information blahblahblah…lol). i don’t believe that the only real place the only real thing to go through is the vocational rehab places, they are absolutely dreadful, people are terrible, maybe i just have had too many bad experiences i dunno. my point i suppose is this: a change needs to be made and we need to make it. simple as that.

First of all there is a support in NYC for high functioning Adults with a Learning Disbaility that is run through thye NYC Chpater of the Leanring Disability Association. The support group takes a break over the summer but meets once a month in Manhattan. You can call 1-212-645-6730 and ask for the executive director of the organization. Tell him that you are interested in the support group.

Also if you have AOL then type in Health and then clcik on Chats. You will see a whole list of problems and then go down to ADD/LD. You will see that there are two chats a week. One Thursday night’s from 9-11 0’clock P.M. Eastern Standards time and the second one Saturdays 8-10 P.M. Eastern Standard Time. If typing in Health does not get ther if you have AOL by the Keyword Icon then type in Health Channel Talk and that should get you there.

Support and advocacy should be the thing. Keep the group membership exclusive to victims and their families. Have the “experts in as guests”. You won’t be able to get all your duck in a row right away. The group will evolve but a somewhat involved mission statement is essential to outline the goals and scope of the group. You’ll figure out the how tos as you go along. Things like where to meet and how often structural organization are less important than a defined mission. The details will fall into place. I would avoid the 12 step model as LD is not a character/addiction issue. It’s a neurological impairment with societal, social and political implications.

Advocacy for the cause and for individuals should be the group’s top priority.

ball

I have ADHD but I also have many of the issues that you described as well take a look at the topic on Sensory Integration and you’ll see the comment. I had yet to meet someone else with my issues. In many ways my LD has never stopped me but in many ways it has created havoc in my life. I live on Long Island and might be interested in a support group, but as some one pointed out you need to organize it well. I went to CHADD for awhile, and tried another group therapy thing in Manhattan but if the members aren’t at pretty close to the same level it can be pretty frustrating with one member of the group pretty much monopolizing things.

Also I’ve been going for OT and vision therapy for these issues and even at my age 44 I’ve found them helpful.

Marleedrew

Advocate till you drop. Turn up the heat on the wrong doers. Write your elected official often. Don’t let up. Do something everyday for our cause. Don’t be silent.

Hi Lyn,

I am responding to an old letter of yours regarding support group. My son
and myself, both adults are having LD. We live in N.Y.C. We are
interested to attend or help you form a support group. Have you did
something meanwhile?