View Full Version : I have a question about finding support.


Stranger
01-26-04, 11:37 AM
How does one go about finding or creating local support for ADD? I can find no local support groups of any kind, there aren't any professionals that deal with adult ADD in this area (I'm not done looking yet, but no luck so far.) I work nights, so starting up something is not really possible, since I wouldn't be able to go to the meetings anyway.

I'm stuck between a rock and a hard place, or rather between the grief and support phases of therapy--I'v grieved about all I want to over the loss of time, what I wanted/hoped my kids would be (they have it, too.) I would like to move on, but I need help that isn't there. My kids are going to turn out like me, only worse, because I don't know how to help them.

Yes, I've read tons of books, but that doesn't help in a real, practical sense.

Any ideas?

Tara
01-26-04, 12:13 PM
Try contacting ADDA http://www.add.org and asking them for info about starting a local support group.

Tara
01-26-04, 12:18 PM
There's also a southern region http://www.adda-sr.org/

Wheezie
01-26-04, 01:05 PM
post here often. that's my advice.

if you can't find a local support group, utilize on-line support groups! they can be a great help.

a positive of on-line support is that i've found that i can get to the core of something much quicker here because i'm not worried about being judged. i'm not likely to run into anyone *here* at my local grocery store. so, i'm much more open.

a negative for me is that i don't always get the feedback immediately.

biker
01-26-04, 01:21 PM
I agree that here is very helpful. I would also try to get some other help. Try Tara suggestions. I would think a town the size of El Paso would have something. If I have not welcomed you welcome! Glad you are here.

Nucking_Futs
01-26-04, 02:03 PM
Welcome Stranger,

We live in a town of 237 ppl finding someone who would even admit ADD here is almost impossible and alot of the times I feel alone, my kids feel alone. What I have found to help is Yahoo ADD chat. There are alot of amazing ppl in the room who not only support each other but are accepting of ones faults. My husband and I have been working on getting a support group started. The first step we took was post an add in our paper, you would not believe the response we got. We are in the second phase now; that's trying to find a building big enough to hold us all. Seems we are not the only ones who feel left out.

Good luck and I wish you the best.

Wheel1975
01-27-04, 02:24 AM
http://www.chadd.org/webpage.cfm?cat_id=7&subcat_id=64

I think that is the "Start a Chapter" link for CHADD, Children and Adults with ADD...

Start a Chapter

Make a Difference.

Prior to your inquiry, please verify that there is not a chapter in your area by going to the chapter locator.



Q. Why do CHADD chapters/groups exist?
A. CHADD is a national organization with five primary objectives:


Provide a forum for continuing education on AD/HD for parents, professionals and adults.
Be a community resource for information about AD/HD
Maintain a support network for parents and caregivers who have children with AD/HD and for adults with AD/HD
Make the best educational experiences available to children with AD/HD so that their specific difficulties will be recognized and appropriately managed within educational settings and,
Promote and influence legislative activities at the national, state and local levels.



To accomplish these objectives we need support in our communities at the grass-roots level to advocate, educate, inform and support. On a national level, we must collaborate with those partners to succeed in accomplishing our objectives.


Q. How do these chapters and groups function?
A. Our chapters and groups serve our communities with programming, education and resources to improve knowledge and awareness of AD/HD for people with the disability, as well as assist those who serve people with AD/HD. In addition, a significant portion of our efforts must be to serve as "agents of change" in our communities.


Q. What are these chapters and groups?
A. Currently there are two main types of grass-roots groups, plus a sub-group.


a) Chapter: Ideally, a chapter serves the community in all areas as mentioned above. It also must have a board, professional advisory board (PAB), develop a business plan with goals and objectives for action in the community and, most importantly, have both a treasurer and a bank account. The Coordinator (group leader) must also have a computer and e-mail capability. It is wise to have 5-8 key people (a steering committee) to start, who will, most likely become your working board.


b) Branch: A branch is a geographic entity under a chapter that serves a community or area at a distance from the head chapter. The goal is to expand the service and program delivery to other communities, while utilizing the value of shared leadership, goals and resources. The Branch does not have its own board, however, a steering committee is strongly recommended. The branch coordinator is also a member of the parent chapter's board and must be involved in all board meetings and activities. The branch may, if appropriate, offer other/additional services to its community if branch leadership feels it is necessary. The branch coordinator needs to have computer and e-ail access, but does not have a bank account. The parent chapter should manage the branch's funds, disseminate monies to the branch and develop internal processes and expectations.


c) Satellite: A satellite does not have a board, coordinator or bank account. A satellite does no fundraising and has little ability to affect change within the community. It functions primarily as a support group for individuals. A satellite will usually come to an end when either (a) the facilitator chooses to leave the group, or (b) when the participants decide to terminate their involvement.



Q. What is involved in starting/running a group?
A. Make sure that you gather people to share the responsibility of running a group. One of the major points we like to stress when starting a new group is that shared leadership is critical to the group's success. If you try to do this by yourself, you will get burned out and the group will probably fall apart. To accomplish anything significant takes teamwork. A CHADD chapter or branch is no different. Follow the steps below for a successful organization:
a) Identify your goals
b) Build your team
c) Share the vision
d) Work together to accomplish your goals.



Q. How do I get started?
A. The first step is to request an information packet that will provide an overview explaining the different types of groups, structure and responsibilities for each group. This includes "Startup Steps to Follow," a guide that will walk you through the startup process. Once you receive the packet, review it and call us if you have any questions. Contact LaToya Wright, Membership and Chapter Services Coordinator, at 301-306-7070 ext. 121 or e-maillatoya_wright@chadd.org.


Q. What kind of support will I get from the National Office?
A. We want to empower you to run your group independently within the National guidelines, and we will be here as a support network to provide information on chapter growth, program ideas, fundraising, membership materials and so forth. You will also receive a Coordinator's Manual that details the business of running a group, and we will provide you with one-on-one guidance as needed.


Q. After I decide to start a group, what is the next step ?
A. First, contact other people who you know would be interested in taking a leadership role in your group-other parents, school guidance counselors, educators, medical professionals, etc. and hold a meeting to determine the need in your community for the group. You may also want to advertise in the community section of your local newsletter (for free), or put flyers up. Next, contact our office for a Chapter or Satellite Agreement and Conflict of Interest forms. (This is a statement that says you have no influencing interest that would affect your decision-making or advance your own personal interests. For example: If you are a psychologist, you can't use the chapter to promote your own business.)

Q. How many people do I need to get started?
A. We recommend 8-10 people to start a group, as you will need to fill board positions; but you can start with as few as 4 or 5.


Q. What about money to start up?
A. Normally, your chapter receives $10 per new or renewing member in your group. Satellites receive $5 per new or renewing member, once there are 5 members in your group. As an incentive to start a chapter, which we find can make a bigger impact in the community, we are offering a one-time $20 per member when you gather 10 new members within the first 90 days of signing your chapter agreement. This means that if you gather 10 people within the first three months of startup, your group will receive $200 instead of the $100 that it would ordinarily receive.


Q. What are the benefits of being a coordinator?
A. The greatest benefit is the personal reward of leading change in your community for all individuals affected by AD/HD. You might be involved with other organizations in your partnering efforts, get involved in advocacy at the state level, or write an article for your local paper. A wonderful intangible benefit is that while learning about AD/HD and educating others, you are also gaining fundamental and beneficial knowledge/skills in leadership, business and non-profit management, and board governance. Many professional careers have been launched after spending several years as a grass roots volunteer.


Additionally, coordinators receive a special discount for annual CHADD conference registration and attend a leadership luncheon in their honor. Coordinators also receive free leadership training at the national conference. Coordinators have access to a special coordinators website and peer chats, and receive a monthly Leadership Update newsletter.

Stranger
01-27-04, 11:28 AM
I have checked with both CHADD and ADDA, via their websites, that there are no chapters within several hundred miles of here. I would start a support group, but I work nights and can't go to the meetings. I have also had bad experiences with starting organizations, where the organizers do all the work until they burn out and quit.

I agree, there are about 750,000 people in this area--you would think that somebody somewhere would be dealing with this too, but I guess not. There is one guy in the phone book who says he treats ADD, but he doesn't take our insurance. My daughter saw a pediatric neurologist for awhile, but he can't do anything with behavior issues. The child psychiatrist both kids saw was a quack--he blamed everything on me (bad parenting again) without once considering the possibility that I was ADD too.

This seems like a nice, supportive MB, which is good, but boy, is it slooow!

Well, we all have our crosses to bear, and this is mine. It hurts to think, however, that my kids are struggling, my marriage reeks, etc. and there's not a damn thing that I can do about it.

FlakeyGirl
01-27-04, 11:37 AM
Write a letter to the editor of your local newspaper. Contact UTEP guidance office or psych dept. Just ideas...I hate feeling like I have no options!:mad:

Stranger
01-27-04, 11:42 AM
Hmmm, a letter to the editor--that's an idea. As for UTEP, I'm a (former) student at NMSU, thank you very much!! But maybe they might know something.

FlakeyGirl
01-27-04, 11:50 AM
Graduate students may be looking for people like you...maybe they can hook you up with others---I don't care much for UT either, I'm U of H Cougar.:D

Stranger
01-28-04, 11:19 AM
Actually, what I thought I might do is, there is a section of the paper that lists upcoming meetings of clubs, service organizations, support groups, etc. I could see if they would post an announcement to the effect that anyone interested in starting an ADD support group could contact me. Now I just have to find out who to contact about it.

Grad students may be looking for people like me??:confused: They didn't look for me when I was a grad student.

FlakeyGirl
01-28-04, 11:23 AM
hehehe--glad you are not feeling so helpless about it now.:D

Stranger
01-28-04, 11:36 AM
Well, I still work nights, and still won't be able to go to the meetings.

FlakeyGirl
01-28-04, 11:41 AM
If you make the group, you can schedule it for anytime you want.

Stranger
01-29-04, 11:33 AM
True, but it has to be a time when others will show up as well. I see very few clubs, support groups, etc. that meet on Saturday nights, which is the only time I could hold it.

The adult meetup for El Paso just got cancelled for the month of February, since fewer than five people signed up. In fact, only one signed up, and see if you can guess who that was.

(Cool, I just turned the page.)

FlakeyGirl
01-29-04, 12:11 PM
Do you think it is more likely or less likely that people who have ADHD would show up at odd times?:D

BTW I have worked the graveyard shift before and I remember being pretty amped in the am after my shift was over. How 'bout a 7 or 8 am meeting?

Stranger
01-29-04, 12:36 PM
Well, since most people work days, that's probably a bad idea. Besides, that's when I take my kids to school. I remember those days (or rather, nights!) of working graveyards, too, and I was NOT amped up at 7 am--I was so tired I couldn't see straight.

Maybe this will have to wait til summer, when Mama has no team practices, and no school.

FlakeyGirl
01-29-04, 12:47 PM
I hear ya. But don't give up.

mom03
02-18-04, 06:06 PM
Okay I have input. Colleges have disability services - for students with ADHD or othe LDs. and College students often have strange work schedules. You could look to advertise putting a support group together that way.. If thoes services know that it is a challenge for thier students to find community support then they ought to be supportive in allowing you to promote a support group within their facilities..

Actually.. within 2 minutes of searching the internet I came across this:

http://www.partnerstx.org/Reg_19.htm

maybe you should spend a little more time searching the internet.. there are a ton of resources out there.

This looks like something you shouldn't miss!!!!!!!!!

Stranger
02-19-04, 11:38 AM
Thanks, ej. That does look like something I should check out.

As far as internet searching goes, my time/access to the internet is very limited. That event didn't appear earlier, but I may have just missed it. (Besides, my wife thinks I waste too much time on the internet as it is!)

When it comes to college, I'm not going this semester...or maybe ever again. It is a waste of my time and money to pursue something that I can't succeed at, and maybe can't do even if I got the MA I was looking for. If I get my ADD worked on, then I may reconsider, but for now I'm fighting a losing battle. I did talk to the school's center for students with disabilities, or whatever they call it, but they were of no help whatsoever. I wasn't in a wheelchair, so there was nothing they could/would do for me.

mom03
02-19-04, 12:03 PM
You must love searching the internet like I do.

take a look at this link:
http://ourworld.compuserve.com/homepages/LDAT/idea.html

also.. doesn't your wife assist in finding help for the kids?

In college I got extended time on test and was able to register for classes earlier than everyone else. I have a BBA - Economics.. I don't use the degree but it sure does look good on my resume.. Go to college for something that is going to help you get a job. That's my advise.. but having any degree on your resume sure does help.. . How many hours do you have? I've seen so many people change their intrest in their Sr. year.. sometimes after they graduate. Or the school you go to will be such a tiny part in preparing you for what you really want to do.

Stranger
02-19-04, 03:58 PM
Actually she does. She's a teacher, so she has contacts with the right people. But my kids are not in the district she teaches in, so those contacts don't help as much, and the district the kids are in this year has not proved helpful in the past, although their schools aren't too bad.

They were seeing a psychiatrist about behavior issues, but his attitude was that their non-ADD problems were all my fault, due to my depression and lack of apparent direction in life. Well, duh, what are two common symptoms of adult ADD?? He never picked up on it at all.

What I am trying to do, and what my wife has no time to do during the school year, is find a different therapist for the kids, and now me. But I am having a hard time finding one who will take our insurance. The workshop you told me about should be most helpful in overcoming that problem!

And I LOOOOVE hanging out online!

In college all they would do for me was give me more time for tests, but that's not the problem--I'm SuperTestTaker. What I need is more tiime on assignments, but that'll never happen.

mom03
02-20-04, 12:54 PM
It will always take you more time on assignments.. but to be able to keep up with the class I'd think you'd have to do the assignments on time also.. occassionaly if you're having a problem with one particular assignment that the professor is already helping you with maybe they'll give you some extra time... they more you work with your professor the more they will work with you.. but I know some professors don't give a s**t either. Use all resources available, like the tutoring center - but I never did.. I just always felt if I hasn't done what was suggest then I knew I could still do better.. like spending 3 hours of study outside of class for every hour spent in class.

Your wife being a teacher I'm sure you knows the state laws in regards to children with learning disabilities and the requirements of the school districts. I have a friend who is teaching innercity elementry Dallas kids who have multiple LDs and mood disorders this year.. I respect that teachers have a challenging job and that working with the schools and all the rules can be challenging also.

Stranger
02-20-04, 02:40 PM
School districts, and individual schools, have differing attitudes concerning ADD. The school my kids first went to when we moved here didn't know or care about ADD, it was just get your damn kids under control so they don't ruin my class. My daughter just about ran her 1st grade teacher out of the business, because she would never sit down, talked to herself constantly, etc. It was only when they moved to a new school, in another district, that the school took an active role in trying to solve the problem. Now they are back in the original district, but different schools. The adderall helps, and the school my son is in is a little more understanding. It's not an issue in my daughter's middle school--she's doing OK there.

As far as my grad school experience goes, it's a disaster--I started out OK, but as time goes on (both during the semester and the program as a whole) I just get slower and slower. I have a raft of Incompletes to make up, and no enthusiasm to do them.

mom03
02-20-04, 06:06 PM
Oh, you're in grad school!!??! Wow.. That's only a dream.. I know that will never, ever happen for me... Undergrad was traumatic for me. It sounds like you are under a bit of pressure to make things better at home. I'd go back to some of the basics like the simple things that would make your wife and kids happy... and practice a few simple relaxing teniques for yourself.. if you can't do it by yourself go to counseling.. I'd recomend counseling for everyone. My husband and I have our own counselors...

I've seen a few different doctors and gotten a few different diagnosis over my lifetime.. It gets really confusing and with the more books you read you really start to wounder if you can trust what anyone says about mental illness. I am almost obsessed with finding out what is really wrong with me and how to best fix it.. right now I'm thinking I may of caused myself enough mental anguish in college to result in PTSD and have been slowly recovering from it for the past 5 years to give off the symtoms of Bipolar II, mostly hypomania... NO doctor would EVER say that was possible.. My husband is diagnosed with PTSD right now.. We know that my symptons were much worse that his have been.

Ever heard of phroluria? I'll let you form you're own opinion..

How did the medical community treat ADD and depression 25 years ago?

find a day job!

Stranger
02-22-04, 02:34 PM
I'm not in grad school at the moment--I owe the school a couple thousand bucks, and they won't let me register until I pay them back. Bloodsuckers.:D

Grad school is not all it's cracked up to be. On the one hand, your profs have a vested interest in helping you succeed, and on the other hand you are held to a much higher standard than the little undergrads. I'm in it mostly because school is the fallback position--when life sucks, and you're not going anywhere, go back to school. Of course life sucks at school, too, especially with a job, wife, and two kids. I get all the work of school, but none of the benefits, because I have to go to class, work, and home, with no stops in between. Plus I have to work twice as hard as everybody else, without the usual grad support network.

I am trying to find a counselor around here that a) takes our insurance and b) deals with adult ADD. No luck so far, but the workshop on Tuesday may be just the ticket.

As for how they treated ADD/depression 25 years ago, they didn't. ADD was not thought possible in adults, and there were none of the modern antidepressant drugs available, only really heavy tranquilizers thal left you too slow and stupid to kill yourself. I saw a couple of counselors over the years, but my episodes of deep depression went away after a couple of weeks, leaving me just sort of blah, but semi-functional, so I bagged the counseling. Seemed like a waste of time then.

I'd love to make things better at home, but we all have ADD, so It's a 3-ring circus every day. As the dad, I'm supposed to make things happen, but how do you do that?? That's the reason I want the counseling --I'm everybody else's default position, but I can't even take care of myself, let alone 3 other people.

apcpapergirl
02-22-04, 05:52 PM
Don't give up Stranger. Counseling has helped my son tremendously.

Stranger
02-22-04, 09:47 PM
It helped my son a lot with his behavior (ODD). I didn't like the counselor, though, because I never found out what went on back there while I sat in the lobby reading old Reader's Digests, and because he blamed everything on me, completely missing the fact that I might have ADD as well.

I'm not giving up the ship yet, although I'd like to. I just don't want my kids hanging around after they grow up, borrowing money from their old parents!

Stranger
02-25-04, 01:19 PM
Well, I went to the workshop...what a waste of time. I was the only English speaker there, so everything had to be translated for my benefit (although I understand Spanish better than I let on.) The info was the same stuff I've been reading for years, and the organization only helps kids, not adults. More power to them, but I can help my own kids if I can get the help I need.

Back to the drawing board...

mom03
02-28-04, 04:20 PM
Well I'm glad to hear you went. That's part of the whole ordeal. I practically chassed my Dr. out of the office on Friday. (our 30 minutes were up) Probing about what is going on with me and how could I be helped. .. he was more concerned about going to lunch. I've seen a lot of docs. I've paid a lot of money. Do they ever call you up to see how you are doing? Especially when they know your insurance didn't pay a dime of your $15k therapy? and you've stopped coming.. no.

I've been diagnosed and evaluated 4 times... I'm on my 4th round of therapy and trying to get help. and my 4th time to shell out money, glad that insurance is helping, but it is still expensive. the drugs are expensive and ins. only pays for a %.. actually with my other stuff.. total I take 5 prescriptions/day, 4 dr. co-pay/month.. It's like $250/month.. but at first it was more cause my ins. paid less.. I was paying more like $400/month.

I have to take time from work for every visit to the doctor, but they don't know my personal problems so this is a conflict to balance these two.. I keep my apts. around lunch and it's good that it's only a 12 min. drive from work..

finding help IS HARD. and there is know perfect fix. everyone is differant... people aren't cars. It takes a ton of energy to get help. And I finially understand not to expect a miricle. I am only hopeful that one day, just maybe I'll be able to do some of the things I've only dreamed of being able to do so. I also know that it's possible.

Go to 1/2 Price Books and pick up a variety of books on the topic of psychology. Used book stores are a great place to shop case they will have books on topics that aren't currently popular - stuff you won't find in a new book store. Read some things on the physical part of the brain. I just picked up a book by Richard Restak. Looks to be intresting. If I ever read it.. cause I don't actually read.. but maybe a few pages at a time. I prefer pictures.

Stranger
02-28-04, 07:22 PM
I finally got a sample pack of strattera from the family doc--it's good for 14 days, so we'll see what happens. Today is day one!

mom03
03-02-04, 11:02 AM
Has it changed everything overnight?

It can help, but it's not going to change your world. You have a lot of other responsibilities. Your situation is very difficult. You can be there for your children. They're your priority. I'd stop worrying so much about myself. Also recognize that the modern add pills haven't been studied for long term, we aren't aware of the health risk that could follow? Focus your energy more on them... simple things can make a big impact. Consider getting rid of the TV.

Someone needs to start a support group, ADD Parents of ADD Children.

Have you checked out www.adhnews.com? another support web site?

Stranger
03-02-04, 11:26 AM
What I have noticed is that I don't feel much different, I just am better able to force myself to do things I don't want to do. Like yesterday, I sat down and did the taxes, something I usually postpone til April 14. I have noticed one side effect, though--about midday I feel lethargic, like I'm on antihistamines or something. It's not as strong as real antihistamines, but still it's unpleasant. Today I'm supposed to up the dose to 80 mg/day, so I'm going to start taking it later, so I can sleep better (I hope.)

I also just noticed another guy in the phone book who deals with ADD--gotta give his office a call today.

Stranger
04-01-04, 11:46 AM
I finally got around to making an appointment to see a psychiatrist who deals in adult ADD. :D

The earliest appointment he had was for June 28. :(

mom03
04-01-04, 01:59 PM
I'm proud of you. Very good. How are your kids doing?

Stranger
04-01-04, 02:40 PM
Okely-dokely! They just keep taking their adderall and plugging along. My son just finished his first year wrestling, and he did good for someone who'd never done it before! And you could really tell which meets he took his meds and which he didn't! My daughter is, well, her own person. We need to find a way to get her music lessons again, but we're so busy running around that there is no time to take her.

So, how you doin'?

mom03
04-01-04, 05:31 PM
My husband suffers from PTSD. We climb threw the workers comp system to get mental health treatment. He is not improving. In fact, I think he's getting worse. We are approching the 1 yr. anniversity of the tragic accident. I struggle to find a way to accept being ADHD and limitations with learning disabilities. I've found a new doc that is covered by my ins. and uses several methods that may be able to help both of us. We'll have our second appt. next week. Kev is so anxious, emotional and on edge that there is no way he could hold a job, but there aren't any lost wage benifits for his situation as a student employee.. so that puts us in a real financial bind..

How fast your life can change forever and there's nothing you can or could of done to change it....

**** Happens

Stranger
04-02-04, 11:59 AM
But good stuff happens, too. Hang in there--it sounds like you are doing what you need to. Just keep doing that, and let the chips fall where they may. And keep us posted!!