KWADD (Kids With ADD) Speak Out About ADD and What Living with it Means to Them

Tonight's panelists were introduced by Judy Olson, GRADDA Education Chair, who welcomed the standing-room-only crowd to what was going to be an exciting and rewarding evening for everyone. Judy told us all that we were "going to hear from the real experts tonight!"

She spoke briefly about how Kids With ADD (KWADD) had developed from an initial idea to what it is today, a monthly support group made of exclusively of Kids in 7th through 12th grades. Their core group has grown to about 18 and they hold their meetings during the Educational Program which is held for the first hour of every first- Wednesday GRADDA meeting. The kids then move to the gym as the parents break out into their own groups.

Judy mentioned that KWADD was started by the Travers family and that the only member of the family who did not have ADD was Linda, the mother. Her husband Jay and all 4 kids were diagnosed. Katie had the idea for KWADD and with her brother, Joe, KWADD was born.

Judy then introduced her daughter, Corinne who was the moderator for the panel tonight.

Corinne: I've had some experience doing interviews in the past: A program for WXXI, the article for Seventeen magazine. I do it because I discovered that when I listen to others talk about their ADD, the feelings and difficulties I felt on the inside didn't feel quite so bad, or weird - but normal.

Too many times there is a negative stigma attached to ADD. I hope that by our talking about ADD and discussing what it is like to live with, we will not only educate, but also help those living with ADD feel not so alone and helpless. To me, talking with people and answering questions has always come naturally and I feel at ease . . but then again, I've always been a very social person!! However, at times it is difficult as it is for many. ADD is not an easy thing to live with. The challenge often provokes negative feelings. This is not our goal today. We want to share with you what our experience with ADD is like for us . . . everything we say may not hit home, but hopefully everyone will leave with a better understanding and a stronger acceptance of what ADD is and what it means to those who live with it.

Corinne told us that it was their desire to have the panelists have more than a presentation, but also share their feelings and experiences with everyone present in order that we learn about ADD from their perspective.

Corinne introduced herself as a 21 year old student attending Hobart William Smith college. She then introduced the panelists and asked them to make brief statements about themselves as a means of self-introduction.

Nate, 16, from Penfield High School was diagnosed 2 years ago, loves music and plays both the violin and Bass.

Joe, 16, attends Irondequoit High. He was diagnosed while in the 3rd grade, takes Ritalin and is involved in sports, particularly wrestling.

Matt, 17, attends Irondequoit High School, was diagnosed 2 years ago, attends Irondequoit High School and he had gone through trials of a number of medications.

Katie, 17, also attends Irondequoit High School. She was diagnosed while in the 8th grade and was taking Ritalin.

Kristen, 16, attends Spencerport High School, was diagnosed while in the 3rd grade.

Jodi, 13, attends school in Kendall. She was diagnosed with ADD while in the second grade. She had taken Ritalin and Tofranil initially but was now taking herbs.

Susannah, 16, attends Brighton High School, was diagnosed this past fall. She had not taken medications yet but was looking. She is taking natural supplements as she was concerned about addictions.

Katie: My family had been interviewed on Channel 9 and the very night of that experience, got the idea for a support group by and for kids. There were 6 kids at their very first meeting (___ of ‘97) and now they have 17 to 18 members. The kids were all different, but they had a common goal which was to let everyone know what it's like and to share with each other . . . "those who've been there". Katie noted it was working out OK . . a bit challenging with 18 ADD'ers together, BUT REALLY FUN!

When asked if KWADD read or discussed books, Katie said that it was hard to sit down and read a book . . that they felt more comfortable talking and discussing. Books were used for ideas, but KWADD is not a "book study" . . . "it's not school!, she said.

Corinne asked, "How was ADD explained to you?

Susannah said she knew herself - her feelings, and how she worked. She knew she thought differently and that although she got the right answer, she took a "different processing route". Susannah did her own research work and noted Thom Hartmann's "Hunter in a Farmer's World" concept. That whole idea "made sense to her".

She described a hunter as a person who pays attention to everything and that farmers as repetitions without distractions. She felt she was" a hunter being asked to do a farmer's work."

Corinne asked if others had analogies used to explain ADD to others, and "How do medications make you feel?"

Katie: I feel Ritalin gets me to be up to the level of the others. It doesn't give me an advantage beyond that, though. It's a tool and you have to do everything else. It's not a "smart pill". When it wears off, my thoughts wander.

Joe: It helps a great deal. I get things done! I can feel when it "kicks in" as I stay on track. Definitely noticeable. Things aren't left until next time. It motivates me to do homework.

Kristen: Meds are OK for school. I can notice when I forget because I become a non-stop talker when I forget or it wears off.

Nate: I take the time release kind with a dose at lunch and after I get home. I can't get my work done when off, especially math. Sometimes I get caught by surprise that the class is over - I lose track of time when not on meds. I'd say that meds "give me a boost of concentration". I also feel less tired. I can certainly tell when I forget my meds and I know I need it to function well.

Corinne: For those of you on an alternative to Ritalin, what's your experience?

Matt: I use time-release Dexedrine. I tried all versions of Ritalin and they made me depressed. There was also a rebound effect - an effect I've heard some others talk about.

Corinne: Are you "dependent" on these meds? Do you feel you are dependent:

Katie: Not dependent. I don't think of it that way. I do know I need it and that it helps. My boyfriend says, "You didn't take your Ritalin, did you?" whenever I do something "goofy". I feel you have to be in charge of yourself so it's more than meds.

Corinne: In college, Mom isn't looking over my shoulder. I have trouble meeting deadlines and it makes me frustrated. What about you?

Katie: YES! I remember a major global report which had to be 3 to 5 pages with bibliography, a cover and all. I waited to the last day and was up to 12:30. The teacher wasn't satisfied with it so I got more time. I got a B+ finally. I'm sure glad that's over!

Joe: Procrastination is a problem for me also. I "know better" but still do things last minute. "I'm a natural procrastinator". The teacher knows this so she checks with me before the deadline and helps remind me I need to do some work before the last minute. I do ask my teachers for more time and sometimes I say it's because it isn't good enough yet. But tomorrow . . . .

Corinne: I'm not hearing you talk about frustration much. How does procrastination make you feel? What's going on in your head?

Katie: I'm proud of Joe for working before the deadlines.

Joe: I think I live in a make-believe world as I seem to think I have enough time to get the job done.

Susannah: Deadlines may actually help me focus although that only works 50% of the time. I had to do an analysis once, and it was too complicated. I seem to do OK at a superficial level, but am in trouble with in-depth assignments. I know I need to find ways around "this" in order to be successful. I need to find the way . . . that's my job . . . my responsibility!

Corinne: ADD is not an excuse. You have to be your own person. Pretend you're in front of people who can help you succeed. What would you ask them to do for you?

Nate: I talk to my teachers and ask them to seat me in front and to write down homework assignments. I try to sit down with my teachers at the start of the year.

Joe: I want my teachers to know my 504 plan and to know about me and how they can help me learn better like seating, extended time. I believe it helps them understand me and give me what I need to learn.

Matt: The best thing is to have them learn about ADD . . . to understand and know what it is and to know what I'm dealing with.

Katie: You stole my answer, Matt! I want to be well educated. It's most frustrating when they don't know. I want my teachers to know: about it and how to deal with it.

Joe: They should be open minded and flexible. All kids are different and have different learning styles.

Kristen: I agree with Matt and Katie . . . Don't yell at me!

Jodi: I agree with Joe on the 504 plan. It's good to be seated up front. When I'm in the back, my mind will wander. I also tend to write and pass notes around.

Susannah: Teachers "nag" and that is good! I want my teachers to be fun, not boring. I noticed a big difference when I sat in front the very first time.

Corinne: Let's get back to the alternatives. What are these? What do they do? Are they effective?

Jodi: I'm on herbs and vitamins because I wanted healthy things vs. drugs. They help me without the side effects such as sleep and eating. I had a trial with Ritalin first.

Corinne: How do you find the herbs? A Doctor? A book?

Jodi: I have a relative whose "into" herbs. I saw a nutritionist 3 weeks ago and brought all my collection of bottles. The nutritionist did tests and found my body and system was all out of sorts. He found the vitamins and herbs were contributing to my system troubles so we rebalanced them. How I'm on different things now.

Audience Question: Some claim these medications are addictive yet we also hear about people forgetting to take their meds? What do you think?

Corinne: I don't feel they're addictive.

Joe: I agree that they're not addictive. I want to take them because I know I do better.

Kristen: I also know I need to take them.

Nate: I know about side effects, but am not sure about addiction.

Katie: I don't want to be (as my mother says) socially inappropriate. I don't think this is addiction.

Audience Question: What about the fun side of this?

The Travers went Bungee Jumping. Corinne went to Vietnam by herself. Katie said it was "Like a circus" at her house. Imagine . . . four kids and 1 father. It's really funny! "It must be stressful on my Mom". But the family understands although maybe others would look at them and think they were "nuts"!?

Nate: I don't have the hyperactive part. I take medicine to help me focus and enjoy the fun. I can't have fun if not on meds because I daydream.

Audience Question: How does your group feel about your social activities and social lives? When does your meds wear off and What do you do when you're off?

Joe: Ritalin only works for 2 to 2 ½ hours for me. I take another dose if I have lots to do at night. It's a bit like coffee. I like both large and small groups. I don't want to be "annoying" so I may take more meds from time to time. I guess I feel more in control with smaller groups. My difficulty with large groups is I may try to jump into too many conversations.

Katie: I hear all 10 conversations in a large group. I find a smaller group less overwhelming . . less distractions. I have to learn what to focus on.

Corinne: Ritalin is a tool . . . it is not the answer. You have to do more than focus - you have to focus on the right thing.

Audience Question (from a young child): What did it feel like to be told "you have a disability"? I was told I had a chemical imbalance in my brain. That's a terrible thing to say!

Katie: Think of it as a gift - not a disability!

Corinne: How did you feel? Shocked? What did you feel like when you were told? Did you experience denial?

Nate: I was frustrated with people getting mad for my not doing the work. The diagnosis was a relief because it gave me a solution to this problem.

Joe: I just went off and played - I was too young to understand the explanation. It didn't shock me.

Katie: I was the last in my family to be diagnosed. Again, it's a gift, not a disability!

Matt: I hate the name - Deficit . . . Disorder. I've learned to realize it's a blessing to be able to "go into another world". After all, it takes Buddhist Monks years to learn how to do this. I can do it easily! Katie: Yes, "We're special!"

Kids Audience Question: Do teachers try to control what you can do? What helps you in school?

Katie: When my teacher found out what I had, she treated me differently. It was insulting at first. She started to talk really slowly and use language that made me feel I was slow or stupid. That's a bad way to treat us!

Audience Question: What's a 504 plan?

Joe: This is a plan which lists things you need to learn better.

Audience Question: What advice to you have for a parent whose 7th grader is in denial?

Send him to KWADD!

Don't push him! Dealing with ADD will be a decision he has to make for himself.

He'll have to be the one who figures out he needs help. It's OK to have him make some mistakes. He'll probably learn from them.

Ed Note: The session ended with heartfelt applause for all those on the panel. It isn't easy to sit in front of almost 100 people and speak frankly and candidly, but it was clear to me that everyone was very comfortable with the fact that they had ADD and that their energy was directed toward dealing with it in a constructive manner. It was also enlightening to hear the variety of perspectives as this shows people don't have to give up their individuality in order to be successful with their ADD.

The GRADDA speakers are usually professionals, be they medical or educational. Judy was certainly correct with her opening remarks . . . that it would be very valuable to hear from the "true experts" . . . those who are on the front lines.