by Leslie Fansler, Parent, Amarillo, Texas
The Winter 1998 edition of the SEE/HEAR newsletter has a wonderful article by Alison Rickerl. Her daughter, Madison, had turned three, and Alison shared her thoughts about her life so far. I enjoyed the article immensely! My own son, Preston, turned ten in February. He was born deafblind, and it has not been easy on either of us. (Hang in there Alison.) His father, Keith, his older brother, Chance, and I have learned many things over the last ten years. Alison's article took me back!
I thought about when Preston was born, his first ARD, and the day he got his first long white cane. I remember when he took out his eyes (ocular prosthesis) at the grocery store and threw them. The man in line behind us almost fainted, then offered to help me find them. I remember the day a lady at the park asked me, "What have you done to that baby's eyes?" I recall a very young Chance looking at her and saying, "My brother can't see. What's wrong with you? Are you blind?" I remember the day I had to face the fact that Preston was not only blind but deaf, too. So many different memories came back as I read Alison's article.
I began to see how far our family has come. I thought about how proud we were on Preston's first day of school and how the whole world seemed right the first time he signed, "Mom!" I reminisced about how much we enjoy beeping Easter egg hunts, the great trips we have been on to attend conferences, and all the wonderful professionals who have touched our lives. As I reflected I realized that life with Preston seems much easier now than it did way back then. I made a list of things I understand now that I didn't grasp when Preston was much younger.
First, I try now to accept Preston as he is. He is our kid, not a thing that we have to "fix." He does not have to learn the same things, on the same time schedule, as other kids, to be all right. Of course, we still have ARDs, therapies, doctors and financial struggles that are the result of his dual sensory impairment. We understand that these things go with the territory, but they are not who Preston is, they are just a part of our life. Preston is not a disability; he is a little boy. He loves to play outside, ride horses, and swim. He is crazy about his daddy, likes to get into his older brother's stuff, and is curious about life. He is learning to sign, use symbols, and express what he thinks. There is a saying, "We must give our children roots to grow and wings to soar!" I can't give Preston his wings if I only see his disability and not the person he is.
Secondly, I have learned to prioritize things, and not just time for therapies or doctors, but to understand that allowing our family to live the life we want is a major priority. When Preston was very young we were constantly handling problems with his ears and eyes. The work doctors did on his ears was to save what little hearing he has. The eye doctors were trying to help him cosmetically, to look as normal as possible. Our team of eye specialists are in Dallas, a six hour drive from our home. For several years we almost killed ourselves trying to cover both these areas. Finally, we decided that Preston needed his hearing more than he needed to look right. We also decided that our family, and its emotional health, was a higher priority than the eye work. Many people will not understand our decision, but we backed off of the eye work and concentrated on his ears. Our family life improved dramatically and both our boys were much happier children. Thank God, Preston turned out to be a beautiful child despite our decision, but balancing the needs of our family unit against the needs of each individual is still important.
Thirdly, I have learned that Chance is a kid, too. He deserves to have a childhood. Preston's well-being and development ARE NOT more important than Chance's just because Preston started out with a severe handicap. For years I told myself, "Chance is going to make it, no matter what, but Preston will not make it in this world if I do not concentrate on helping him catch up and learn what everyone else is learning." I regret having that attitude. Chance has dreams, goals, needs, and disappointments in his life, too. Preston is never going to "catch up" because he is where he needs to be. Chance's childhood is just as important as Preston's. Chance needs a mother who does not make his brother's disability the focus of her life.
The fourth thing I have learned is I have to be organized to accomplish all the things life demands of me. I have to make lists, schedules, and a calendar to refer to daily! I must write down everything I need to talk to a doctor about and take that list with me to appointments. I do not have time to make another appointment because I forgot to ask the doctor something important. I start preparing for ARDs months in advance to make sure every issue is addressed. It is time consuming going back to the ARD team to discuss something that pops up the first day of school when it could have been addressed in our annual meeting. My husband and I both work full time and we make our family life a priority; so I have to set goals, be organized, prepared, and on schedule.
The fifth thing I have learned is to be a team player. This means I respect and appreciate the people on Preston's educational and medical teams. I will sit across the table from the members of Preston's ARD team for many years to come. His VI teacher has been with us since he was nine days old. It is not to anyone's advantage to make an enemy of her. Please do not misunderstand me, I know Preston's rights and will advocate for what he needs; however, there is a fine line between assertiveness and aggression. I know because, regretfully, in the past I have crossed that line. Assertiveness will get Preston the things he needs; aggression will make enemies of people on our team.
Most professionals are good people and are in their field because they care about kids. I have had to learn to work within a team. My grandmother told me, "You will catch more flies with honey than with vinegar." When it's time to really push for something important, I need all the flies in our corner! I have learned a little appreciation goes a long way. I give gifts and write letters to professionals to thank them for what they do for Preston. I write letters to those professionals' bosses also to let the people in places of power know what a good job the teachers, therapists, and caseworkers are doing. I write and write. Sometimes I spend whole weekends on my computer, but it's worth the effort.
The sixth important thing I have learned is to serve, serve, SERVE on every committee, board, council and anything else I can be involved in. When Preston was in ECI, I served on the Parent Advisory Board. I currently serve on the Regional Advisory Committee and the statewide Consumer Advisory Counsel for Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) . My husband serves on the Board of Directors for the Deaf-Blind Multihandicapped Association of Texas, and he has served on the advisory board to the Deafblind Outreach Project at the Texas School for the Blind and Visually Impaired. It is my goal to serve on an advisory committee to the Texas Rehabilitation Commission. It is important that we stay involved with every agency that serves the deafblind of Texas. It's not easy, and I always have the great excuse, "I don't have time to serve on that committee." Reality is, I don't have time not to serve. It is one of the best ways we can influence the services and supports that Preston will need throughout his life. It is vital that parents serve, as often as possible, and when you can't serve, write letters to people with power.
The seventh important thing I have learned is that TO NETWORK IS TO SURVIVE! I network with families, professionals, and people in the government. I do this to gain support for myself and to have someone to call if I run into a situation that I cannot handle by myself. When Preston was very young, I so wanted to believe that he was only blind. I joined groups for families of children who were only blind. We NEVER fit in. We always stood out in the crowd. It was like drowning in a sea of support. All the other families were in the lifeboat and I couldn't get there. As Preston got older, even I could not deny the fact he is deaf, and I was able to get over my "multihandicapped phobia." We joined the Deaf-Blind Multihandicapped Association of Texas, and they tossed me a life preserver. I believe I would have lost my mind if we had not gotten involved with this group and started networking with families who had kids like Preston! Now I have an extensive network of friends, families, and professionals who know about deafblindness. Keith talks to other fathers; Chance interacts with siblings; and we meet couples in the same boat we are in. We know many professionals we can call upon for help. There are people who mourn our disappointments and celebrate Preston's accomplish-ments with us. Many have gone before us. They encourage us and warn us of the pitfalls. Many more are coming behind us who can benefit from our experiences. There is an old African proverb that says, "It takes a village to raise a child." Families need to build their "village" by networking.
The eighth thing I have learned is don't let standardized test scores seal your fate. Assessments should not determine who your child is, what you are, or your hopes and dreams for that kid. I have yet to find a standardized test that is normed on a deafblind child like Preston. In the early years those three-year evaluations the school did killed me. They scored him at levels I could not deal with! Expressive language - two months, self-help skills - six months, etc. Good grief, how can a parent of a six-year-old see that and not be totally devastated? I can tell you how; ignore them. One year they label Preston mentally retarded, the next time they take that label off. Does that label actually change who Preston is? No, Preston is Preston. He still uses his cane to go outside, get on the trampoline, and play for an hour. He still uses a calendar box to get dressed, eats with his fingers if no one is watching, and wants the horse to go faster than I think is safe. The joy I find in Preston does not come from a label nor can a label take it away. Learn to listen to what the professionals say; then go home, hold your kid close, and thank God that you have him. Ignore someone who would immediately place him in an institution after seeing those test scores!
Another important thing I learned, a lot later than I should have, is that communication is the key to all locks. When your child that is multihandicapped is a baby you want him to do what all the "normal" babies are doing. They are learning to play with toys, eat baby food and crawl. The professionals keep saying, "We must work on communication!" You hear these words but in your heart you are saying, "Nobody's baby talks at this age, we need to teach our baby how to eat, play and crawl. Talking comes later!" I have learned the professionals are right. Preston can walk as well as any ten-year-old, but he still struggles to communicate the most basic things. You must concentrate on communication constantly, from the beginning. If they say your child needs sign language, go that very day and sign up for an ASL class. If they say your child needs concrete symbols, contact the Deafblind Outreach Project at Texas School for the Blind & Visually Impaired, and ask for information on the van Dijk calendar system and symbols. Then use those alternative communication systems with your child every time you share an interaction. Do everything in your power to help your child develop communication. Many things are important, but life revolves around our ability to communicate to others. Do not fool yourself, your child has to be able to communicate to succeed outside the walls of your home! How I regret the years I did not make communication my number one goal with Preston.
The tenth, and maybe most important thing I have learned, is "Stop and smell the roses." Both of my children are a gift from God. They will be whatever he intends for them to be. He expects me to do the best job I can raising them, but I believe he also expects me to enjoy my time with them and to teach them to enjoy their life, regardless of their potential, shortcomings or disabilities.