Winter 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

What Did You Do During Your Summer Vacation?

The Families Connecting with Families Conference
Revised with permission from Connections, Fall 2007, a publication of the American Foundation for the Blind, <www.afb.org>

Abstract: Three parents describe their experiences bringing their children with visual impairments to a national family conference.

Keywords: blindness, visual impairment, children, family conference, traveling with child, NAPVI

Editor’s note: The original article only included Shawna Tausch’s story. TAPVI has added two other families’ perspectives for the reader’s enjoyment.

TAPVI logo “What did you do on your summer vacation?” was a familiar writing assignment for many people when they were growing up. What would the 186 children who attended this summer’s “Families Connecting with Families” conference in the Heartland of America in Omaha, NE, write about their weekend at the conference? Would they share stories of the chocolate dessert fountain on Friday night, the trip to the zoo, the Indian dances on Saturday night, the old-time songs played on a real harmonica, the adventure of making new friends in the children’s activity setting, or listening to teenagers tell their stories? We didn’t ask the children who attended the conference to write up their stories. However, we did ask three mothers from Texas who attended to share their families’ experiences. Their stories follow.

BY MICHELE CHAUVIN, TAPVI PRESIDENT ELECT, SUGARLAND, TX

Recently my daughter, Lauren, and I attended our first family conference together at the NAPVI “Families Connecting with Families” conference in Omaha, Nebraska. Lauren is six-years old, and she is legally and functionally blind due to retinopathy of prematurity (ROP). My biggest concern about going was Lauren’s behavior on the plane ride, at the hotel room, and during childcare. Would Lauren yell out, “Plane all done!” and have us thrown off before takeoff? Would she sleep at night or keep me up all night? Would someone find me at the conference, tap me on the shoulder, and whisk me away to collect my unruly child?

Although this was her first airplane ride, Lauren surprised me. She behaved very well at the airport and on the plane, mostly listening to DVDs, audio and music CDs, and reading braille books. I learned the hard way that it is easier bringing a carry-on backpack than a rolling suitcase for a child who is blind, both for the parent and the child. This allowed for quick and occasional sighted guide as needed in crowded airports.

At the conference, Lauren had plenty of opportunities for polishing her social skills and her cane skills. We shared a hotel room with another mom and daughter from Houston, and we enjoyed the girly slumber party each evening. I was amazed how well four females shared one bathroom! It can be done. Lauren had fun learning cane travel techniques and songs from her teenage roomie. She daily practiced riding elevators and escalators, as we traveled to the conference childcare area. Lauren also spent an afternoon at the Omaha Zoo, which was a huge step towards independence since I left her in good hands with the conference caregivers.

I admit I wondered if I would learn anything new or valuable after years of attending trainings. I was nicely surprised again. While the kids were preoccupied, the adults attended wide selection of conference sessions. We had the opportunity to hear everyone from Carl Augusto, AFB President and CEO, to Mike May, President of Sendero Group, to Linda Lawrence, a pediatric ophthalmologist. I enjoyed every minute of it.

I especially benefited from a small group Q&A session, as well as the larger general session with Dr. Linda Lawrence. She addressed eye diseases and treatments around the world. It really helped put things in perspective, as I realized how truly blessed we are in our country concerning vision health care. I also gained new insights from a breakout session led by a music therapist, who discussed how our brain processes music.

Throughout the conference, we met several families with children who were Lauren’s age or who have her eye disease. I valued our time with these families the most, as it was an exceptional opportunity for connection with others who share similar challenges and concerns

Though our plane was delayed slightly when returning home, we were glad to finally get back. Now we could get on to the best part about the conference.sharing what we learned with our friends, family, teachers, therapists, etc. If I had it to do again, I’d do it in a heartbeat. Thanks to TSBVI Outreach for making it all possible for my family to attend.

BY KIM CUNNINGHAM, PARENT, PEARLAND, TX

My fifteen-year old daughter, Kayleigh, and I really enjoyed attending the “Families Connecting with Families” conference in Omaha. It was such a pleasure to meet the “younger” families and their children. There were so many people, so eager to learn.

Kayleigh and I met a wonderful lady who competes in triathlons. She inspired Kayleigh to keep up with her athletic abilities.

Kayleigh and I both enjoyed hearing Carl Augusto, the President and CEO of the American Foundation for the Blind, speak. He is so inspirational. Mr. Augusto spoke of his mother encouraging him as a youngster and how much she influenced his life. Apparently Kayleigh was very touched by his words and tears flowed down her cheek. Someone in the audience noticed and offered to introduce her to him after his speech. She was thrilled to meet him!

I hope that Kayleigh and I gave encouragement to the other families by seeing that blindness is not gloom and doom, but just a different happy place. We both tried to answer as many questions as we could.

Kayleigh and I were both interviewed and hope to make the “cut” for the video AFB is compiling for families. That was a lot of fun!

Most of the breakout sessions were geared more for families with younger children, and I didn’t learn much from them. We were also hoping that there were going to be more teens attending, but Kayleigh met only two others. I felt a little mislead about age ranges for the conference. Hopefully the next conference will offer more for teens who attend, like a dance or something. I have offered both Kayleigh’s and my help if needed. These conferences are great times for our kids to foster friendships.

Ultimately, the trip to Omaha was great because it gave Kayleigh and I the opportunity to “hang out” and enjoy each other’s company. Often times, these situations allow us to be more relaxed and discuss issues that we may miss out on during our day to day lives. We also had the opportunity to checkout the technology during the exhibit. Kayleigh found several pieces that would benefit her in school. Look out Region IV! We’ll be knocking on your door!

BY SHAWNA TAUSCH, TAPVI PRESIDENT, LOCKHART TX

I will start at the beginning, a 22-hour road trip to Omaha in a rented RV with six of our seven children. That, in and of itself, was an experience. Cramming the aforementioned children and two adults into two hotel rooms was another experience; it was fun in that weird, family-bonding kind of way.

At the conference there was something for everyone. Every child found someone they could relate to in the diverse group of children. Those in charge of childcare were unbelievably compassionate and attentive. Several of my beloved children have behavioral issues and I was concerned that they would be unable to participate in group activities, but the days were structured so that we had no behavior problems at all (at least none that were reported to us).

As for the sessions, they were equally diverse. I am fairly well versed in special ed law, IDEA, ECC, etc. My husband of less than two years is relatively new to all of it. This was his first conference experience. He came away from it armed with enough information to begin assisting me in ARD (Admission, Referral and Dismissal) meetings and advocating for the boys. In fact, we have two ARDs tomorrow in which he already has a list of ECC goals he wants addressed.

The vendors were also a huge help. The crew from Humanware was very helpful in pointing us in the right direction with technology for the boys. The kids also enjoyed the numerous “freebies” that were available. (Although as parents, we didn’t enjoy the whistling yo-yos so much on the 22-hour drive home).

Family night was great; all the kids seemed to enjoy the activities and they are practicing the Old Western songs on their harmonicas almost daily. (On the ride home, 6 harmonicas in the RV for 22 hours was a unique experience). The kids have decided that they are going to create a “band.” I am going to send them to Bill Daugherty’s office when they do.

The biggest plus about this conference is that it refocused us on what we need to do for the boys. We had dropped braille in favor of auditory learning. After attending several sessions and talking to various visually impaired adults as well as professionals and other parents, we have decided to increase their braille time with the goal of having them become braille readers.

This conference also gave us the knowledge, motivation, and resources to adjust our IEP goals to do what we feel is best for our boys. We are able to offer documented studies and statistics in our discussions about what is best for them.

My husband and I have talked about the family conference extensively since July and we really have nothing major that we would have changed. We would have loved for it to last a few more days. I will admit that we did miss the family social because we were all exhausted. We are planning on arriving the day before in LA. All in all, it was a great family vacation.

Editor’s Note: Michelle, Kim and Shawna wish to thank All Blind Children of Texas for gracious assistance allowing Texas to have a strong representation at this national family conference. The American Foundation for the Blind (AFB), The Seeing Eye, Inc., and the National Association for Parents of Children with Visual Impairments (NAPVI) partnered to sponsor and this event, which drew 689 attendees. If you weren’t able to attend this year, start making plans for Los Angeles in 2009.see you there!

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Last Revision: June 9, 2008