Future Reflections Special Issue: Blind Children with Additional Disabilities
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by Andi Borum
From the Editor: Andi Borum is president of the Virginia Parents of Blind Children and is the mother of two daughters who are deafblind and have additional disabilities. This article is based on a talk she gave at the conference for parents of blind children from birth to age seven, "Beginnings and Blueprints," held in May 2009 at the Jernigan Institute in Baltimore.
I'm Andi Borum. I'm the mother of two beautiful daughters. They are deafblind with additional disabilities. My oldest daughter, Chelsea, was born in 1994, and my younger one, Olivia, was born in 1998. In the fifteen years since I have officially entered the world of parenting children with special needs, both of my children have received all the therapies that you can imagine, mostly through the public school system. In addition, they have been through many, many, many surgeries, about forty-two operations between them, and they have undergone more tests than I can count. My kids are usually very happy, and they function quite well, given their special needs.
In the beginning of my journey as the parent of children with significant challenges, I asked myself several questions. Where do I begin? What do I need to understand about all of this? And when will this overwhelming feeling ever go away? To answer the question Where do I begin? I found there was really nothing for me to decide. Ready or not, my journey had started. I was a first-time mom with a four-pound infant who had to receive a tracheotomy. It was on right from the start, and it was definitely twenty-four/seven.
Any parent with an infant can feel overwhelmed at times. You get unbelievably tired. You hope that a pattern for eating and sleeping develops so that at least you can get into a routine. In my case, Chelsea required constant attention. I couldn't predict when I would have to suction her. It could be any place, at any time. Unfortunately, she came home from the hospital without the support that she needed. She actually required a nurse to care for her, and I needed lots of training and respite right from the beginning. I was very sleep deprived!
This situation went on for about six months. Finally, at a doctor's appointment (she had thirteen specialists at the time!) the pediatrician stated that she was going to admit Chelsea to the hospital. Incredibly, she had only been admitted once before then, after the initial neonatal intensive care unit (NICU) experience. Generally, children with tracheotomies are admitted once or twice a month. The doctor could have given her an antibiotic and sent us home, but she decided that an admission would take care of the infection and give her a chance to work with the discharge planner. She wanted to make sure that we left the hospital this time with the proper support, which was nursing care.
What did I need to understand? I needed to understand as much as I could about the diagnosis of CHARGE syndrome and the issues it would present for my child and our family. I learned that CHARGE is a rare genetic condition that affects vision and hearing as well as the heart, kidneys, and many other organs.
Identifying a child's disability and getting a diagnosis can be a gradual process that occurs over many months or even years. Chelsea received the diagnosis when she was one week old, so we were very fortunate. However, CHARGE is such a rare syndrome that nobody but the geneticist knew anything about it. The doctors and nurses had never heard of it before. It was important for me to acknowledge that Chelsea had CHARGE and to educate others about the syndrome. It was equally important for me to focus on Chelsea's development, her strengths and abilities. I learned to take life one day at a time, and to take each day with a positive attitude.
One morning during the shift change for the nurses at the NICU, the parents were required to leave the unit. I remember sitting in the waiting area with four or five other parents. We sat in total silence. The mother who happened to be next to me started to cry. I asked her what was going on with her child. She responded that he was three days old and needed heart surgery. I replied that we were fortunate to have a children's hospital and that it was the best place for us to be. There were talented doctors who could perform extraordinary surgeries on infants. It was nice to open up conversation with her that day. By saying something positive to someone else, I momentarily found peace about my own situation.
To answer the question When will this overwhelming feeling go away?--in my case it never has. Most of you have heard the saying "My plate is full." I can safely say, "My platter is full!"
Beginning the Journey
For some of us, family and friends are a great source of support, asking what they could do and offering help and understanding. For others, friends may drift away and even some family members may become distant. It can be hard for those around us to understand the range and depth of emotions that we experience. Please remember that you are not alone! Within your extended network of family and friends you will soon discover who is able to support you during the stressful times. Keep in mind that it may not be easy for family and friends to understand your situation. They can be so overwhelmed that they don't know what to do or say. It's not always easy to admit to yourself and others that you need help. Try to be specific about the things that others could do to help you. Do not be afraid to let those close to you know how you feel. Opening communication with family and friends can sometimes help relationships grow closer. Having a child with a disability can also open the door to new friendships and support networks.
As you begin your journey, I suggest that you journal the highlights of each day. Sometimes it's helpful to write down what you're thinking and some of the emotions involved. I also urge you to create a filing system. It was truly amazing how many piles of papers I accumulated, and how fast those piles grew. I didn't develop a system until several years had gone by, and by then my paperwork was a mess! When I started filing, I filed by specialty. I started a folder for the eye doctor, another one for the hearing specialist, another one for the orthopedic team, one for the dental team, and so on. If I changed doctors along the way, I didn't have to start a new file. All of the previous records for that specialty were easy to locate.
Don't be afraid to ask questions. Often professionals use terms that we don't understand, so we need to ask for clarification. As parents we have to make a lot of decisions regarding our children. We need to be sure we have accurate, up-to-date information in order to make those choices.
It is also valuable to find positive role models, parents and professionals who can share their knowledge and experience. I finally found the National Federation of the Blind in 2005. I was struggling to understand my daughters' vision issues. We went to four different eye doctors, and they each gave us different reports. Each doctor listed a different set of eye conditions. Looking for answers, I attended my first NFB chapter meeting. Who better to answer my questions about vision loss? I was blessed that our state president, Dr. Fred Schroeder, happened to be at that meeting. He was curious about the educational opportunities my children were receiving. Sadly, neither of my girls was receiving appropriate services. Neither of them was getting Braille instruction. Braille had never been discussed at an IEP for either of my children.
After attending several chapter meetings, I was able to go to the Virginia state convention. At the meeting of the parents' division I was nominated as its vice president and happily accepted that position. After a short time I moved to the position of president of the Virginia Parents of Blind Children. In 2006 I was asked to participate in the National Federation of the Blind Parent Leadership Program. I attended my first national convention in Dallas that year.
Since my involvement with the National Federation of the Blind, I have participated in the planning of several seminars for parents. The first seminar that I planned focused on orientation and mobility. We had a wonderful keynote address by Joe Cutter, who pioneered teaching the use of the long white cane to young blind children. I experienced my first cane walk during that seminar. I was guided by Seville Allen, and my cane was way over my head! I don't think either of us realized that that was not the right height for my cane!
At another seminar we concentrated on Braille and literacy. Again we had a wonderful keynote speaker, Dr. Ruby Ryles, who has done groundbreaking research on the value of Braille to blind children and adults.
As parents of children with disabilities, we share a common bond. By sharing information and supporting each other, we help our own families and others as well. We might use different words to describe our situations, but what brings us together is a shared belief in our strength as parents.
With all the challenges that come with having a child with a disability, it can sometimes be hard to maintain a positive outlook. Celebrate your achievements and appreciate your child's successes, small and large. You and your family can still experience plenty of joy and happiness.
I want to make sure that every parent takes away this message if nothing else: Be kind to yourself! Do not focus continually on what needs to be done, but remember to look at what you have accomplished. Looking after yourself can mean many different things. With all the other demands and responsibilities in life, parents tend to put themselves at the bottom of the list. Among all of the hospital visits, specialist's appointments, and therapy sessions, you also need to make sure that you do not forget your own needs. It could mean finding time to be with friends or with your partner, spending quality time with your other children, enjoying a hobby, or doing some voluntary or paid work. You are worth it! Looking after yourself may sometimes seem like an impossible task. Taking regular time out for yourself is good for your health and well-being. When you look after yourself you will be better able to look after your child and your family.
As parents we all need support. There are three ingredients for a strong support network. One is information. You need to have information, you need to know how to access information, and you need to be sure you're getting good information. You also need support, like meeting other parents, sharing knowledge and experiences. Finally, there's advocacy. I think it's important to belong to groups that can help you advocate for improvements to the entire service system.
If you have a child with disabilities, you will get involved in the special-education maze. The service system is very complex and confusing. It can take a lot of time for you to find your way through the maze to the information you need. Often the best results are achieved when you seek information from a range of resources rather than relying on one professional or one service provider. It takes time to explore all the options, but the effort is worthwhile. At first, I was overwhelmed by all the information. Gradually I learned to sift through it and work out what was relevant for us and what was not.
As far as parent support, I think it's very important to talk to someone who has a parent's perspective. Every child is unique, and every family is different. You might have all the right information, but you still may need help to understand what it means for you and for your family. This reminds me of what happened when I was expecting my second child, Olivia. Having had one child with significant challenges and being the age that I was, mine was considered a high-risk pregnancy. I had lots and lots of ultrasounds. I was constantly told during those procedures, each and every one of them, the various problems that my daughter was going to have. Her brain and kidneys weren't developing normally. Her hands were deviated outward. They convinced me that my child was going to have Trisomy 13. I'm not very familiar with that condition, but I was told it was going to be fatal. I had a hard time believing that. My first child wasn't very active when I was carrying her, but my second child was. They kept telling me that the pregnancy wasn't going to turn out well, and I kept pressing through.
Being an effective advocate is one way to work toward getting the best for your child. It isn't easy. Sometimes emotions take over, and advocacy can also be very exhausting. But with persistence and the right support, parent advocacy can help you get what you need and what your family needs.
The range of services that are available should be flexible and adaptable to your particular circumstances. It is reasonable to expect that service providers will work with you to identify and deliver the support that is most important to you. Sometimes you have to be creative when working with service providers to put together a package of services. There can also be long waiting lists for some services. It's better to know about a service and to explore options for accessing it in the future than not to know that it's there at all.
There are many professionals and service providers whose job it is to help you. They will be able to draw on their own skills and experience, but it is impossible for them to know everything. It is important for you to trust your instincts. As a parent you have to explain what you believe is right for your child. It is important for parents to encourage good working partnerships with the professionals. (I don't know that I've always done that so well, but I've certainly tried!) We need to respect their role and listen to their points of view. Sometimes situations arise that require us to challenge the professional. This is not always easy to do, and some professionals do not react kindly to being challenged! But if you feel uncomfortable about the advice that's being given by a professional, you should trust your instincts and seek further information. You may even decide to get a second opinion.
You will soon discover that you need to become very good at standing up for yourself and for your child. You need to make sure that your voice is heard and understood by the people who are making decisions that affect you and your family. I've learned that for my family to get what we need I have to speak up and ask questions. Otherwise we don't seem to get anywhere.
I've made up my own acronym from the word ADVOCACY. For the letter A, I say Accept your child. Your child has special needs, but they are not the sum total of who he/she is. Your child has abilities, personality, and a million and one other characteristics that make him or her a unique person. Beyond the disabilities our kids are still regular children.
D is for Determination. As a parent you will need to arrive at lots of decisions. You must pace yourself and never give up. Be determined to gain knowledge about the issues, and keep learning.
V: Voice your concerns. Become the kind of parent who asks questions and advocates for her/his child. Consult with the professionals, but don't give up your parenting responsibilities. Respect your unique knowledge of your child. You are an expert in your own right, and you will seek to apply that expertise to your child's life. A good advocate can get communication flowing. Please do not be afraid to speak up!
O is for Open-mindedness. Once you have made your points, it's time to listen. You've said what you think, and now you get to hear the responses of the professionals. Don't be too quick to object to those responses, even if your initial reaction is negative. Collaborating with the team is more likely to lead to a solution than arguing about whose perspective is right. Listening is hard! Take notes on what you hear. Try to restate and summarize the main points you are hearing, not only the points that you yourself are presenting.
C stands for Calm, cool, and collected. Face it--problems are going to arise. It is important to be prepared ahead of time. Stay calm, cool, and collected. When you go into a meeting such as an IEP conference, it's a good idea to take along another advocate. Another person can help you remember the main points of the meeting and can keep you grounded if you start to get upset.
A: Ability, attitude, above-board. Don't let anyone tell you that your child's ability is limited. It is your job as a parent to envision what could be possible for your child. Focus on maintaining a positive attitude, and stay above-board.
C: Caboodle, cahoots, and calculated. Out of the whole kit and caboodle, pick your battles. Find a partner you can be in cahoots with. This person can align his/her belief with yours, and together you can make calculated decisions affecting your child's education.
Y: Yourself. Take time for yourself! Pamper yourself! If you don't take care of you, you will not be able to take care of your children. Be patient with yourself. This is not a sprint, it's a marathon. When you're in overload you shut down and no one benefits from your efforts.
Advocacy is about problem-solving, envisioning choices, and taking action to make life better for your child and for others. Thank you. [Applause.]
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