The only thing more devastating than enduring a disease or disabling condition is when it happens to someone you love, especially your child. For me, growing up while going blind might have been an altogether different experience, and I may have become someone very different than who I am, if it were not for all the things my parents did to give me a full life. As a blind adult, I consider myself among the most fortunate of daughters. A disability does not have to be a barrier to your child’s sense of self-esteem or her ability to live her fullest life. You may be grappling with feelings of guilt, anger and frustration, unsure where to turn. Below are a few coping strategies that may help you to find strength and the support you need.
Educate yourself. Learn everything you can about the disease or disability. Learn the vocabulary necessary to effectively communicate your child’s needs. Remember, knowledge is power, and if nothing else, you’ll be able to quickly ascertain the depth of education or experience a professional may or may not have with respect to your particular set of circumstances.
Get more than a second opinion. Don’t just consult more than one doctor; consult more than one type of doctor. If, for example, your child is having difficulty with assimilating information, don’t conclude your fact-finding at your pediatrician’s or general practitioner’s office. You may want to see a specialist, a neurologist, or even an ophthalmologist. Sometimes a child can be too quickly “diagnosed” by school officials as learning disabled when in fact the child may actually have a vision problem. Consulting several doctors will help to ensure the most accurate diagnosis possible.
Keep up on current research. Be careful, however, this may prove to be an emotional trap for a loving parent who can become obsessed with finding answers. It might be a good idea to assign a family member or friend to be the “go to” person when it is time to seek new information. This point person can be the one to surf the net, subscribe to newsgroups, visit parent’s forums and read medical journals or science articles on the latest research. Delegating this task will allow you to focus on quality time with your child and focus on his or her developmental needs.
Maintain a separate identity. You are not your child and this isn’t happening to you. The disease or disability is happening to your child, and don’t forget that. As tempting as it is, you cannot take that specific burden on yourself. Financial burdens, housing burdens and transportation burdens – yes, those can be yours to shoulder, but not the disability itself. If able, the child must learn that, ultimately, he will be his best advocate. Empower him or her as early as possible. As much as you may desperately wish to relieve your child of that which you believe he surely must be suffering, you cannot. In fact, he or she may not be “suffering” at all, and projecting that onto your child does him or her a terrible disservice. Your child may not be able to comprehend the gravity of the situation, but a child has no difficulty grasping your responses to it. Try not to allow your grief and anxiety to define your child. The best thing you can do for your child is to teach self-sufficiency, encourage resourcefulness and advocate self-determination.
Don’t take “no” for an answer. No one is a better advocate for your child than your child or you. Do not allow anyone to speak for you if they do not represent your views, needs or best interests, or those of your child. Build a team of trusted professionals, cheerleaders and supporters.
Give yourself a break. Avail yourself of professional, peer or group counseling. You may feel alone, but you’re not. Let others help you. Allowing another person to help you can be a tremendous gift for you both. Underestimating the extent to which you feel overwhelmed can be detrimental to your decision-making ability. Take good care of yourself, so you can be the best caregiver for your child.
Copyright 2010 by Laura Legendary. All rights reserved.
Laura Legendary is a speaker, author and educator specializing in disability awareness, accessibility and assistive technology. Visit Eloquent Insights at http://www.eloquentinsights.com to request Laura for your next event. Find Laura's Accessible Insights blog at http://accessibleinsights.info/blog.