| The only thing more devastating than enduring a | | | | sought. This point person can be the one to surf |
| disease or disabling condition is when it happens to | | | | the net, subscribe to newsgroups, visit parent's |
| a loved one, especially your child. For me, growing | | | | forums and read medical journals or science |
| up while going blind might have been an altogether | | | | articles on the latest research. Delegating this task |
| different experience, and I may have become | | | | will allow you to focus on quality time with your |
| someone very different than who I am, if it were | | | | child and focus on his or her developmental needs. |
| not for all the things my parents did to give me a | | | | Maintain a separate identity. You are not your child |
| full life. As a blind adult, I consider myself among | | | | and this isn't happening to you. The disease or |
| the most fortunate of daughters. A disability does | | | | disability is happening to your child, and don't |
| not have to be a barrier to your child's sense of | | | | forget that. As tempting as it is, you cannot take |
| self-esteem or her ability to live her fullest life. | | | | that specific burden on yourself. Financial burdens, |
| You may be grappling with feelings of guilt, anger | | | | housing burdens and transportation burdens - yes, |
| and frustration, unsure where to turn. Below are a | | | | those can be yours - but not the disability itself. If |
| few coping strategies that may help you to find | | | | able, the child must learn that, ultimately, he will be |
| strength and the support you need. | | | | his best advocate. Empower him or her as early |
| Educate yourself. Learn everything you can about | | | | as possible. As much as you may desperately |
| the disease or disability. Learn the vocabulary | | | | wish to relieve your child of the burden you |
| necessary to effectively communicate your child's | | | | believe he or she surely must be suffering, you |
| needs. Remember, knowledge is power, and if | | | | cannot. Your child may not be able to |
| nothing else, you'll be able to quickly ascertain the | | | | comprehend the gravity of his or her situation, |
| depth of education or experience a professional | | | | but a child has no difficulty grasping your |
| may or may not have with respect to your | | | | responses to it. Try not to allow your grief and |
| particular set of circumstances. | | | | anxiety to define your child. The best thing you |
| Get more than a second opinion. Don't just consult | | | | can do for your child is to teach self-sufficiency, |
| more than one doctor; consult more than one | | | | encourage resourcefulness and advocate |
| type of doctor. If, for example, your child is | | | | self-determination. |
| having difficulty with assimilating information, don't | | | | Don't take "no" for an answer. No one is a better |
| conclude your fact-finding at your pediatrician's or | | | | advocate for your child than your child or you. Do |
| general practitioner's office. You may want to see | | | | not allow anyone to speak for you if they do not |
| a specialist, a neurologist, or even an | | | | represent your views, needs or best interests, or |
| ophthalmologist. Sometimes a child can be too | | | | those of your child. Build a team of trusted |
| quickly "diagnosed" by school officials as learning | | | | professionals, cheerleaders and supporters. |
| disabled when in fact the child may actually have | | | | Give yourself a break. Avail yourself of |
| a vision problem. Consulting several doctors will | | | | professional, peer or group counseling. You may |
| help to ensure the most accurate diagnosis | | | | feel alone, but you're not. Let others help you. |
| possible. | | | | Allowing another person to help you can be a |
| Keep up on current research. Be careful, | | | | tremendous gift for you both. Underestimating the |
| however, this may prove to be an emotional trap | | | | extent to which you feel overwhelmed can be |
| for a loving parent who can become obsessed | | | | detrimental to your decision-making ability. Take |
| with finding answers. It might be a good idea to | | | | good care of yourself, so you can be the best |
| assign a family member or friend to be the "go | | | | caregiver for your child. |
| to" person when new information needs to be | | | | Copyright 2005. All rights reserved. |