by Carrie Gilmer
From the Editor: Carrie Gilmer is the new, extremely energetic and dedicated president of the National Organization of Parents of Blind Children (NOPBC). She has prepared the following information to give families of blind kids a glimpse into what is in store for them at this summer’s NFB convention when the NOPBC gets together. This is what she says:
The future belongs to those who can anticipate it and take it in hand. This takes a certain level of power, foresight, commitment, confidence, and often just plain hard work. When my husband and I first learned our son Jordan was blind, we had the feeling his future had been snatched away. We had no experience with blindness. We had lost the feeling that his future was ours, and ultimately his, to mold. Something beyond us, blindness, now seemed to limit what he could do, no matter how good we were as parents, no matter how bright and cheery or good he was himself.
While we hoped a normal future was possible, at first we could not imagine how to lay a foundation for it. We lacked knowledge about blindness skills and therefore felt powerless to help him; his future seemed suspended until we could get some answers. We sought someone with accurate knowledge who would tell us what to do. We had the commitment, we had the love and were ready to work hard, but we did not know how to get that future back again.
Though they wanted very much to help, the doctors could not tell us what to do. Our families, friends, and neighbors did not know what to do, but they tried to offer something because they loved us. Much of the advice and questions from these well-meaning family and friends demonstrated as much ignorance as we felt. They asked, “Aren’t there eye transplants?” They advised, “Make him eat lots of carrots.” We concluded that we needed professional help, someone who was an expert on blindness. We looked to the schools. We just assumed that someone who was specially trained and who had been working with the blind for decades would be an expert with accurate knowledge. Soon, though, the suggestions and actions of our school experts seemed to make no more sense than those suggestions we had received from the totally inexperienced. Meanwhile Jordan struggled and was falling behind in school. We were getting more concerned about his future rather than less.
Then we discovered the National Federation of the Blind. We met a wide variety of blind people who had taken their futures into their own hands. What an array of normal futures! We also met professionals who recognized the blind as the true experts and worked with them as colleagues. These professionals also recognized parents as experts and colleagues. We met other parents who had become experts and were willing to share their knowledge and support so it would be less difficult for us than it had been for them. The blind, parents, and professionals were working side by side. We always knew it was our responsibility as parents to chart the course of Jordan’s early life, but our power to navigate had been temporarily lost. The blind people, parents, and professionals in the NFB gave us the right navigational tools. We became empowered to be the navigators while he was young and to teach him how to navigate for himself more and more as he grew.
It takes a village to raise a child, any child. And we all know that the future is dependent upon the power, capabilities, and imagination of the next generation. Young children do not already possess the power, experience, knowledge, or skill to navigate their own futures. The whole purpose of raising them is to teach them how to do it--to be ready as adults able to navigate in the real world. It is after all, in the end, their futures we are talking about. The independent futures of our children, futures that truly belong to them, cannot be shaped only by professionals, or only by the blind, or only by parents of the blind—we need each other, and our children need all of us to believe in them and to work on their behalf.
Nowhere other than at an NFB convention can parents, professionals, and blind people find each other in the same numbers and with the same resources acting out the definition of team, moving the futures of blind children toward real freedom and normal possibility. For nearly twenty-five years Barbara Cheadle, president emerita of the NOPBC, planned and oversaw NOPBC annual conferences that empowered thousands of families to shape the futures of their blind children. Traditions were created and have come to be loved. A standard of excellence was set, a tone established. This is my first conference as the new NOPBC president. It is harder to invent something than to maintain it; my already deep admiration for Barbara has expanded exponentially as the logistics have multiplied. I have given my best efforts to maintaining what Barbara began. The traditional “If it ain’t broke, don’t fix it” has always been an idea I embrace. But “What else can we do?” is another concept I use. It is safe to promise that we will have some old things as well as new things, but all up to our standards and tone.
This year, in recognition of the crucial need for a collegial effort to empower blind children to take control of their own futures, the National Organization of Parents of Blind Children will begin with a joint conference among parents, blind professionals, and rehabilitation professionals whose teaching is based on NFB philosophy. On the morning of July 3, for the first time ever, the NOPBC will kick off jointly with NFB rehabilitation professionals in a large group presentation. We will then break into sessions designed to meet specific topics of interest--some for parents, some for professionals, and some that hold common interest. We recognize that we have a need to teach each other and to get to know each other. We will also have opportunities to network and socialize between the two groups.
Every year the following information seems to confuse a few people, so please read carefully. The National Federation of the Blind’s (NFB) annual convention is the whole thing, the entire convention. It has its own registration, fees, and schedule. The NOPBC parent division conference is a distinct set of activities, including its own meetings, workshops, registration, and fees. It takes place during the NFB annual convention. NFB Camp is not run by the NOPBC; it is separate childcare provided by the NFB, run by Carla McQuillan, who is appointed by President Maurer, for all children, blind and sighted, ages six weeks to ten years, whose parents are attending convention. NFB Camp has its own registration and fees. The Teen Youth Track is hosted by the NFB’s Jernigan Institute. The Youth Track has no separate fees from those of the NOPBC registration fees.
Please take note of the following:
The NFB convention agenda and registration are separate, and the convention has its own fees and deadlines. They are the whole week and include many activities for everyone, main general sessions, exhibit halls, and the banquet; they qualify you for the low hotel rates. (Consult the first two pages of this issue for details.)
NFB Camp is also a separate activity with its own registration form and fees. (See the preceding article for a description and registration form.)
NOPBC Preregistration ends June 1 and will then be closed. Save $5 by preregistering. It will cost $5 more a person in Detroit. Some workshops may have reached seating capacity by late registration and may be closed to new registrants. Don’t risk it, preregister now.
Day 1: Friday, July 3
Morning:
7:45 a.m.–8:30 a.m. Late NOPBC Registration: Rehabilitation professionals do not need to register for both NOPBC and rehab events. Those who have preregistered should check in and pick up name tags and materials. Everyone must register to attend any part of the NOPBC conference. Save money and headaches, register early.
8:30 a.m.: NFB Camp opens (ages six weeks – 10 years): must preregister, check the NFB Camp article for information about activities and fees and to preregister.
NOPBC Members, Rehabilitation and Education Professionals, Children 5–18, and Interested Others
8:45 a.m.
Welcome: The Future Is Ours and Theirs
Dr. Edward Bell, Louisiana Tech University, and Carrie Gilmer, NOPBC president
8:50 a.m.–9:30 a.m.
Welcome and Kid Talk with Dr. Marc Maurer, NFB president
9:30 a.m.–10:15 a.m.
“What I Really Need from You Is…” Teen/Young Adult Panel
Children and Youth
10:15 a.m.–noon
Braille Carnival
Children and Teens (ages 5–18) will be dismissed with escorts to attend the Braille Carnival. Laura Weber, coordinator
10:15 a.m.–noon
Youth Track All about Me (option for ages 13 and over). See Youth Track information in “Convention Attractions” elsewhere in this issue.
Parents, Professionals, and the Organized Blind
10:20 a.m.–11:00 a.m.
Bridging the Gap: Parents, Professionals, and the Organized Blind
Keynote: Dr. Fredric Schroeder
11:00 a.m.–11:45 a.m.
IEPs and IPEs: What’s the Difference? Carrie Gilmer and Dr. Edward Bell
11:50 a.m.–1:45 p.m.
NOPBC lunch on your own; pick up your children.
July 3 Afternoon Break-outs:
NOPBC Parents, Interested Blindness Professionals, NFB Members, and Others (Must either be registered with NOPBC or be rehabilitation professionals). Look for simultaneous, informative rehabilitation breakouts for July 3 in the rehabilitation professionals listing in “Convention Attractions” elsewhere in this issue and in the rehabilitation conference agenda available at conference registration on July 3.
2:00 p.m.–5:00 p.m.
Five separate, three-hour, concurrent workshops. Choose one.
1. Show Me the Technology: Middle/High School
Matt Maurer, professor of instructional technology, Butler University, and Al Lovati, technology instructor, Indiana School for the Blind, join with some homework survivors to teach you what you need to know.
2. Braille Music for Dummies:
Enough Braille music to know better and help your student. Kyle Conley, Jennifer Dunnam, and Michigan’s own Braille Beats
3. One-Two, Buckle My Shoe; Three-Four, out the Door
Teachers of blind students and experienced parents cover proactive intervention towards typical preschool child development timelines: Preliteracy, play, technology, and IDEA rights for preschool.
Debbi Head, Heather Fields, and Annee Hartzell.
4. Five-Six, Pick up Sticks; Seven-Eight, Lay Them Straight
Teachers of blind students and experienced parents cover proactive intervention towards typical elementary school timelines: Literacy, technology, social skills, extracurricular, and IEPs. School and home.
Denise Mackenstadt, Emily Gibbs, Carol Castellano
5. Penrickton Center
Special off-site option for parents of children with moderate to severe multiple disabilities: This center uses Lillie Nielson’s philosophies and techniques.
Brunhilde Merk-Adams
2:00 p.m.–5:00 p.m.
Children and Youth K–12
1. Not So Mad Scientists: Chemistry Experiments, Hands-On
Dr. Andrew Greenberg, University of Wisconsin–Madison; Cary Supalo, Penn State; Marilyn Winograd, teacher of blind students; and Dr. Lillian Rankel, science department, Hopewell Valley High Central, returned by popular demand. Thought chemistry or science was boring or inaccessible to the blind? Think again.
2. Show Me the Pictures: Ann Cunningham, author, artist, and teacher at the Colorado Center for the Blind, will make pictures and drawing fun while sneaking in instruction on interpreting, making, and using tactile drawings and representations. Debbie Kent Stein, another author, assisting
Rotating by K–grade 5 (1. and 2.) and grades 6–12 (2. and 1.), 90 minutes each session.
Youth Ages 13 and Over Option: (See Youth Track for details)
2:00 p.m.–3:30 p.m.
"Back and Biceps, Chest and Triceps"; 3:30–5:00 p.m. "Me and YouTube"
5:00 p.m.–6:30 p.m.
Dinner on your own. Parents are encouraged to mingle and network with professionals in education and rehabilitation by joining their Mix and Mingle Reception during this time.
6:30 p.m.–10:30 p.m
NOPBC Hospitality: All are welcome.
Brief Program: 7:00 p.m.–9:00 p.m. Barbara Mathews, emcee
Growing Up Blind
Rookies: Tips and Tidbits for Convention Survival
Sharing Parent Power
Day 2: Saturday, July 4
Morning:
NFB Registration (pick up your packets), exhibit hall opens, Independence Market opens. Wear your name tags all week. No NFB Camp today.
Families, Chaperones, Teachers, and Kids:
Cane Walk: Can Run, Rock, or Roll
9:00 a.m.–10:30 a.m.
Session I: Talk and Travel
10:30 a.m.–noon
Session II: Talk and Travel
All ages and family members welcome, children require a chaperone or parent. Done under sleepshades. Carol Castellano and NOPBC in partnership with Jeff Altman of Nebraska Commission for the Blind, Dr. Edward Bell of Louisiana Tech University, Louisiana Center for the Blind, BLIND, Inc., Colorado Center for the Blind, individual NOMC-certified instructors, and NFB members.
Parent/Teacher/Child:
9:00 a.m.–noon
Cane Crawl/Toddle/Walk: Ages 0–3
Instructed playtime and independent movement; active class (no siblings).
Dr. Denise Robinson, Debbie Head, Merry-Noel Chamberlain, Stephanie Kieszak-Holloway, Heather Fields
Noon–1:45 p.m. Lunch on your own.
July 4: Afternoon
Childcare for ages six weeks – 4 years not available for the afternoon sessions.
Limited assistance in finding individual babysitters will be offered; quiet or sleeping young children are welcome to attend with parents.
Parents:
2:00 p.m.–3:30 p.m. Choose one:
1. Spaghetti, Meatballs, and Birthday Parties: Manners, Cafeterias, Games, Playgrounds, and Friends (pre-K and elementary). Debbi Head, Emily Gibbs, Merry-Noel Chamberlain
2. Bring Me to the Mall; Text Me Later: Manners, Food Courts, Friends (middle and high school). Eric Guillory and Deja Powell
3. Back to School: Getting ready now for fall IEPs, new schools, the next grade, new teachers, other professionals in your child’s life, and friends. (any age). Carol Castellano
4. Speed Bumps: Improving Braille Reading Speed and Fluency (any age). Dr. Ruby Ryles and some speed readers
3:30 p.m.–5:00 p.m. Choose one:
5. Getting Ready to Bring Home and Manage the Bacon: Summer Jobs, Vocational Rehabilitation, and Volunteering (middle and high school).
Jan Bailey, vocational rehabilitation counselor for three decades
6. Book Making: No, not gambling; making Braille books at home (pre-K and elementary). Krystal Guillory and Carlton Anne Cook Walker
7. Cooking and No Looking/Chores without Bores: Two blind sisters, Melissa Riccobono and Jennifer Wenzel, who grew up with the expectation of cooking and doing chores and are now moms themselves, share nonvisual techniques and tips (any age).
8. Pro to Pro to Parent to Para: What if: the teacher of blind students says, “It’s not my job,” and the OT says, “Not my job,” and the ST says, “I don’t know how,” and the parent says, “I don’t know how,” and the O and M says, “It definitely is not my job,” and they all say, “Let the para do it, because we don’t have time.” Whose job is what? How can everyone be helped to know, empowered to do--decisively working as a team? (any age). Dr. Denise Robinson, Gail Wagner, Annee Hartzell
Children and Youth:
2:00 p.m.–5:00 p.m.
1. Braille Beats--Kids get into Braille music in a fun way. Kyle Conley
2. You Want to Move it, Move it: Lisamaria Martinez, judo expert, and friends get the kids moving it. Stacy Cervenka assisting. Rotating: K–grades 5 (1. then 2.) and grades 6–12 (2. then 1.), 90 minutes each session.
5:00 p.m.–7:00 p.m. Dinner on your own.
(Recommend moms dine out. See next item.)
7:00 p.m.–9:00 p.m.
Dads’ Night Out:
Sighted dads of blind kids, blind dads of sighted kids, blind dads of blind kids, or, if you are a man and were once a kid with a father and have some advice for dads―all are welcome.
Day 3: Sunday, July 5
Morning:
NOPBC has nothing scheduled. (Get your NFB registration packets and Independence March items if you have not already done so.)
NFB Camp opens (must have preregistered for camp).
Afternoon:
11:30 a.m.–12:30 p.m. Casual NOPBC board gathering for lunch.
12:45 p.m.–5:00 p.m.
Middle School Big Adventure: Okay guys and gals, this is your day to hang out with blind mentors, explore the area, make friends, influence people, check out the exhibit hall without your parents. It is your free time to hang out together as a group and have fun (ages 9–14 only, same-age siblings welcome). Led by Michael Freholm and Garrick Scott.
NFB Camp, (ages 5–10) afternoon field trip to Bouncin’ Kids (Must be preregistered and paid with NFB Camp).
Parents and interested others:
1:00 p.m.–5:00 p.m.
Annual NOPBC Division Meeting: Making Their Future Dreams Come True
Can a Blind Kid Dream of Being a Fireman?: Parnell Diggs, president, NFB of South Carolina
Making My Own Dream Come True: Surprise Guest
Independence the Old Fashioned Way: Surprise Guest
What I Want to Be: Kid Panel
Here’s How to Do It: Most Excellent Teachers
Are Love and Marriage in the Dream? Sighted and Blind Spouses Panel
NOPBC Presidential Report
Brief Business Meeting and Elections
6:30 p.m.–9:30 p.m.
Braille Book Flea Market (all welcome):
Happy birthday, Louis Braille! Louis makes an appearance, cake served.
Program, recognitions, books, books, and more books
Day 4: Monday, July 6
Daytime:
March for Independence
NFB General Sessions begin. See convention agenda online after June 1.
Evening:
Parents, Rehabilitation Professionals, and Interested Others
6:30 p.m.–8:00 p.m. Choose one:
1. Braille for Dummies: (very basic) Why Braille, the myths and the facts, print or Braille or dual, where a parent can learn it, what the law says, getting books easily in hardcopy or by the Internet using the technology available. Dr. Denise Robinson
2. The Science of Getting in on Science: Adapting with high and low tech tools for equal participation and understanding in science. Cary Supalo, Marilyn Winograd, and Dr. Lillian Rankel
3. Mental Mapping: How do you become skilled at mental mapping and independent mobility? How do you use sounds and cues in the environment? How do you get back from whence you came? Daniel Kish
8:00 p.m.–9:30 p.m. Choose one:
4. Show Them the Pictures: Tactile pictures and maps. How can you help your child get access to pictures, and why are they important? Ann Cunningham
5. It Adds up or Multiplies When You Can; Subtracts or Divides When You Can’t: Taking the headaches out of adapting—high- and low-tech in math. We want them to like math, know they can do it, and get the access to actually do it. Eric and Krystal Guillory
6. Research and Eval Testing: What Kind of Data Is That? Dr. Ruby Ryles and Dr. Eric Vasiliauskas
Children and Youth: Ages 5–14
6:30 p.m. –9:30 p.m. A universally fun time: Noreen Grice and volunteer coordinator Michael Freholm
Youth Track Option:
Monday, July 6: 7:30 p.m.–8:30 p.m.
"Me and the Gossip Girls": Teen Talk Session, teenage girls (ages 14–18)
"Me and the Guys": Teen talk for teenage boys (ages 14–18)
Day 5: Tuesday, July 7
Parents and Interested Others:
6:30 p.m.–9:30 p.m.
Mock IEP. Come laugh and learn. Those who wish to attend the Mock IEP but are not NOPBC registered may join in the hilarity by donating $5 at the door. Watch out: between the laughs you might really learn some advocacy and what is proper in an IEP. First come, first seated. When the seats are filled, there are no more.
Children and Youth: Ages 5–14
6:30 p.m.–9:30 p.m.
We will not let convention acquaintances be forgot. Led by Michael Freholm.
Youth Track Option
6:00 p.m.–10 p.m. (ages 13–18)
"It Wasn't Me": Murder Mystery at the Club
Day 6: Wednesday, July 8
8:00 a.m.–9:00 a.m. NOPBC Annual Board Meeting
Last Day General Sessions. Great banquet in the evening.
Printable Word Version of the Preregistration Form
NOPBC 2009 CONFERENCE PREREGISTRATION
Postmarked by June 1
Preregistrations postmarked after June 1 will be returned.
Mail to:
Carrie Gilmer, NOPBC President
Registration
1152 106th Lane NE
Minneapolis, MN 55434
Fees: (Fees for the 2009 NOPBC Conference cover workshop materials, informational packets, extra AV equipment, hospitality refreshments, children’s workshop materials, and other expenses not covered by the NFB or donated by presenters. Registration includes at-large NOPBC membership dues.) $25 for each adult for preregistration by June 1, $30 per adult for late, $5 per child ages 5–12 for preregistration by June 1, $10 for late, $15 per youth ages 13–18 preregistered by June 1, $20 for late registrations. Preregistration closes June 1. After that you must register in Detroit.
(NOTE: NFB Camp and NFB convention registration are separate.)
# of adults attending:______(x) $25=____Early, (x) $30 Late_______
# of children (age 5–12):____(x) $5=_____Early, (x) $10 Late_______
# of teens (age 13–18):______(x) $15=____Early, (x) $20 Late_______
Total: $__________________
Enclose check payable to NOPBC. Registrations without payment will not be considered valid.
Preregistration is strongly urged. Seating capacity for all NOPBC workshops and activities is limited. First come, first registered.
Adult(s): Name:______________________________________________
[ ] parent [ ] professional [ ] other___________________
Name:_____________________________________________________
[ ] parent [ ] professional [ ] other____________________
List additional adults below.
Name ________________________________
Address:_____________________________ City:_____________________
State:____________ Zip:______________ Phone:_____________________
Email:____________________________ Alt. phone:__________________
Children’s names and ages:__________________________________________ _____________________________________________________________
Want to receive Future Reflections? _______ Local NFB/POBC member?____
Is this your first convention?_________ If not, how many?______________
WORKSHOP SIGN-UP
Postmarked by June 1
Adults: Friday, July 3, Afternoon workshops, 2 p.m.–5 p.m. Choose one:
1. Technology [ ] 2. Braille Music [ ] 3. Preschool [ ] 4. Elementary [ ]
5. Penrickton: Moderate/Severe Multiply Disabled Child [ ] (off-site)
Children and Youth: (ages 5–18)
Register for all NOPBC sessions unless choosing Youth Track option. (You may choose the Youth Track options for one or all sessions.)
Braille Carnival [ ] # children____ Ages_______ Names________________
Rotating by 90 minutes each session: children K-grade 5 go to science then art; grades 6-12 art then science.
Science [ ] # children___ Ages_______ Names_______________________
Tactile Art/Pictures [ ] # children___ Ages ______ Names______________
Youth Track: (option for kids 13 and over)
“All About Me” # teens _____ Names______________________________
Concurrent with Braille Carnival
Youth Track: (13–18) Fitness # teens___________ You Tube # teens_______
Saturday, July 4, 9:00 a.m.–noon
Cane Walk:
Session I: 9:00 a.m.-10:30 a.m. [ ] # adults________ # children________
Session II: 10:30 a.m.-noon [ ] # adults________ # children________
Cane Crawl/Toddle (ages 0–3) [ ] # adults_______ # children________
Adult afternoon workshops, July 4:
2:00 p.m.–3:30 p.m. Choose one for each adult:
1. Manners/Social (pre-K and elementary) [ ] 3. Back to School [ ]
2. Manners/Social (middle/high school) [ ] 4. Reading Speed [ ]
3:30 p.m.–5:00 p.m. Choose one for each adult:
5. Job Readiness [ ] 7. Cooking/Chores [ ]
6. Book Making [ ] 8. The Four Ps [ ]
Children and Youth (ages 5–18):
Music [ ] # children____ Ages_______ Names____________________
Move It [ ] # children____ Ages_______ Names___________________
Sunday, July 5: Middle School Big Adventure (ages 9–14) [ ] #_____
Middle School Student
Names__________________________________
Monday, July 6, 6:30 p.m.–9:30 p.m.
Children’s Activity # children___________
Adult (check one for each adult attending if different or more than one):
6:30 p.m.–8:00 p.m. Braille [ ] Science [ ] Mental Map [ ]
8:00 p.m.–9:30 p.m. Pictures [ ] Math [ ] Research and Testing [ ]
Tuesday, July 7, 6:30 p.m.–9:30 p.m.:
Children’s Activity # children__________