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Original materials below are reproduced from Coping.org, a Public Service of James J. Messina, Ph.D. & Constance M. Messina, Ph.D., 6319 Chauncy Street, Tampa, FL 33647 Email: jjmess@tampabay.rr.com ©1999-2004 James J. Messina, Ph.D. & Constance Messina, Ph.D. |
These rights are a summary of the article "Twelve Parental Rights" written by Kay Ferrell, a parent. It first appeared in the November 1985 issue of The Exceptional Parent.
Have you wondered what is the best way to act now that my child's special needs have been identified? Do I have rights? Do I have a say in how my child will be treated from now on? Must I sit back passively while others tell me what to do? Here is a list of rights of a parent whose child has been diagnosed as having a disability. This list of rights has been identified over the years by parents of children with special needs:
The right to feel angry
Nothing in life prepares one for having a child with a disability. When it is your child, it seems all the more unfair. You did not ask for this, and there is very little you can do about it. Your sense of control over your life and the life of your child is at risk. Be angry, but use your anger to get the best services you can for your child.
The right to seek another opinion
It makes good sense to seek a second opinion before having surgery, before investing money, or before buying a used car. It should be no different for you and your child, whether you are looking for medical care or an educational program. If you hear of a new treatment that might help your child, why shouldn't you look into it? Times change and so do treatment modalities.
The right to privacy
The privacy of each family member can be jeopardized simply by the presence of a child with a disability. Suddenly a series of professionals examine, give advice, and sometimes even judge the actions of individual family members. One parent said that the hardest part for her was having to turn to experts: "it was difficult to have to have someone tell me what to do with my child'' Some aspects of your life are simply no one else's business. If you do not want to give interviews, or have your child's picture taken, it is your right to refuse.
The right to keep trying
Although parenting is not easy, all parents do the best job they can. It can become harder when well-meaning friends and professionals pronounce that you have set goals that your child will never be able to reach, or that you must stand back and accept the fact your child has multiple problems and will never be able to develop normally. There is nothing wrong with you if you are unwilling to give up. If your child has the potential for learning, no one knows what event or combination of events will make the difference for the child. If the others turn out to be right, so what? You will have the knowledge that you did your best for your child.
The right to stop trying
Well-meaning friends and professionals have also told parents that they do not work often enough or long enough with their disabled children. ''If you would just do this at home for 15 minutes a day and on the weekends, it would make such a difference.'' The truth is that it could just as easily make no difference. You are the one who lives with your child. You are the one who is being asked to do one more thing. You are the one who feels as if you are expected to accomplish at home what trained teachers have not been able to accomplish at school. If you just cannot do it tonight, okay! That is your decision.
The right to set limits
There are limits to what one person can do. Don't expect yourself to think about your child incessantly. Your child shouldn't expect to be the center of attention. You have limits, and your child has limits. Learn to recognize both, and give yourself a chance to examine the situation before responding in anger or fatigue. You don't have to be a ''super parent.''
The right to be a parent
Teachers and therapists who work with children with disabilities and their families often give parents activities to do at home. Remember, you are mommy and daddy first. You cannot expect to be a teacher or therapist all the time. Even your child's teacher or therapist cannot teach or treat all the time. (If you ask them, the teacher and therapist would probably admit that they are great at teaching or treating other people's kids, but they can't do a thing with their own.) You and your child need time to fool around, giggle, tickle, tell stories, laugh, and just do nothing. Those times are just as much a part of your child's ''education and treatment'' as the time you spend on scheduled activities.
The right to be unenthusiastic
No one expects you to be ''turned on'' all the time. Sometimes you feel sad, you feel sick, or you're worried about money, or your child. If other people take that as a sign that you're "not adjusting'' or that you're ''not accepting your child's situation,'' that is their problem. No one is excited about work every day; it can be tedious one day and new and interesting the next. The same is true of parenting. There will be days when your child thrills you and then days when parenting will seem like the most boring task on earth, You have a right to be 'up'' sometimes and "down" at other times.
The right to be annoyed with your child
There are days when you like your child and days when you don't, but that does not mean that you don't love your child. Children with disabilities are just as capable of being ornery as other children, and they should be disciplined You may feel extremely guilty about doing it, but your child will benefit and greet you the next morning as though nothing had happened.
The right to time off
You need time to yourself, time with your spouse or partner and other adult family members, and just plain time without kids. Many parents describe a tremendous feeling of freedom the first time they went alone to the grocery store after their child was born, even though they were doing a chore, and even though they didn't talk to anyone but the checkout clerk. There are many parts to your life. Each part deserves as much attention and nurturing as does your target child. This refueling will benefit your child in the long run.
The right to be the expert-in-charge
You know your child better than anyone else. You spend the most time with, you have lived with , you know what works and what doesn't with your child. Teachers and therapists come and go, but you are the expert with the experience and first-hand knowledge about your child. You have the right to be in charge of your child's educational, developmental, social, and medical decisions, at least until the child is able to make them as an adult. Professionals do not live with the consequences of their decisions, so while you might want their opinions, remember that they are only opinions and not facts. They cannot tell you: "that you're wrong," "that you will regret it," "that you're selfish," or "that you're not looking far enough ahead." Nor should they make you feel guilty or pressure you into a decision. Parents are the single most important resource that children have.
The right to dignity
These parental rights boil down to the right to be respected and treated as an equal. You expect to be neither pitied nor admired, but you expect to be listened to and supported in a nonjudgmental way. You expect to be treated the same, whether or not your child has a disability. You expect the truth from the doctors, teachers, social workers, and therapists who are there to help you. From your friends, neighbors, and family members, you deserve a chance to be someone other than just the ''parent of a child with a disability.'' You deserve to know why the doctor is looking into or exploring some part of your child's body. If the reason is not voluntarily given, ask. You deserve the courtesy of having professionals who visit your home arrive promptly for appointments. If a teacher or therapist is repeatedly late with no satisfactory excuse, call the program supervisor and ask why. You deserve to be talked to as an adult. If you feel a teacher or a therapist is talking down to you, speak up and tell them so. Sometimes, when you are the parent of a child with a disability, you have to risk being aggressive and, sometimes, even rude in order to obtain the dignity that is your right and your due.
