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Success & happiness: a goal for all children.

Adolescence can be a frightening time for parents and children. It is a time of change so significant that the parents of even the "normal" child face major adjustment. For parents of a child with a disability, this period is even more challenging. The wish to nurture and protect requires "totalitarian" control over the child. In the light of emerging needs for selfdeterminination, the exercise of such control fosters conflict and unrest. At this time, a child may suffer more repression by his or her parents than by society. This repression and concurrent conflict negatively influences relationships and increases stress and the ability to cope is often strained to the breaking point. Now the good news! Very nearly the same dynamics are experienced by parents with "normal" children. The most effective way to cope with change is to prepare for it and help create it. TEENAGERS NEED PRACTICE

A teenager with a disability is himself at a disadvantage in coping with adolescence since he has a limited number of peers with similar disabilities in his environment. As a result, a child will require assistance through these periods of change. Since role models are not readily available to him, he will require understanding and guidance in properly interpreting and responding to the changes that his biochemical system is requiring of him. When John says, "Mom, I'm not a kid anymore," it's your cue to provide opportunities for him to exhibit independence and self-determination in a controlled environment where he may safely test the limits of his ability to come. STRENGTHS AND WEAKNESSES

Parenting a child with a disability is remarkable for what makes it simultaneously unique and usual. It is unique in that the child's weaknesses are so visible and the adjustments required are so abrupt. It is usual in that the child changes as he develops.

Instead of being seen as developing strengths, the teenager displays his weaknesses in such a way as to direct our efforts to overcoming them. Many weaknesses require remediation and therapy. However, strengths should not be overlooked when goals are developed. Imagine what would happen to the normal" child if he was forced to spend his energies

overcoming weaknesses rather

than developing strengths. 1,

for one, would still be trying to

learn a foreign language rather

than writing this article. What

would you be doing? PARENTAL ROLE

Stages of development in which parents participate by providing nurturing, protection and modeling do not pose any great threat to their role as parent and provider. However, concerns regarding the role of the parent during the adolescence of their child with a disability are voiced repeatedly at the seminars I have attended over the years. Interestingly, the concerns voiced by the parents are no different than parents of adolescents in general. NEEDS OF PARENTS

The problem parents have in responding appropriately to the changes experienced by their child is simply lack of experience. They cannot look to their parents or friends as examples of how to bring up a special child. This is an area where the professional should be of assistance, but in reality is of little help and is often responsible for causing anxiety

A major impediment to dealing effectively with issues of independence and dependence in the youngster is the failure of our educational system to train professionals to recognize and respond to the needs of parents as well as the needs of the children. Further, an understanding of parental needs is essential if the professional service provider is to be able to focus maximum attention on the needs of the person with a disability. In fact, unmet needs of a parent often result in suspicion and concern regarding a provider's motives.

A parent who is not constructively involved in providing for the needs of his child will negatively interfere with the provision of such services by others. It is most important that providers enlist the potential of parents by recognizing and responding to parental needs. HAPPINESS

Independence does not mean danger. A goal focused on "helping children with disabilities reach their maximum level of independence as espoused by many well-meaning agencies is interpreted by many parents as an attempt to push the child into a minefield fraught with danger and risk." The most noble of goals have, in fact, taken on meaning depending on the motivation of the party responsible for implementation. We have seen mainstreaming, "least restrictive environment" and deinstitionalization to name a few, be subject to constant modification as a result of economic conditions unrelated to the best interest of the individual. Original purpose and intent are often interpreted to meet current conditions.

However, I have found no goal concerned with the independence of the young person with a disability which cannot be made reasonably safe by recognizing the validity of "happiness" as an ultimate objective. Neither the fanatic civil libertarian, who would promote freedom of choice in spite of impaired ability to choose rationally, nor the cost cutting bureaucrat can inject their own motives when the risk/reward ratio of a specific activity is evaluated in light of the ultimate happiness of the individual. PLANNING FOR THE FUTURE

A further insurance against subjecting the child to excessive risk is professional recognition of the value of parents as both resources and decision-making partners when developing plans for the future. Parents often know what is best. However, the fears of parents often interfere with the development of programs likely to promote the potential of their own child to participate fully in the joys life has to offer.

The joy and pride of having a job and bringing home a paycheck, regardless of amount, cannot be compared to laughing at a Road Runner cartoon. The latter is safer, the former is a fulfilling participatory activity which contributes in its own, perhaps limited way, to the common good. The more meaningful the reward, the more significant the effort and risk. However, risk need never raise to the level of danger through neglect, exploitation or abuse.

Several years ago, I compiled language from a variety of sources which I felt reflected the moral and ethical standard for persons who find themselves in the position of directing the lives of people with disabilities. I have attempted to balance the need for risk-taking with safeguards from danger. I have used this language in hundreds of guardianship judgments as well as wills and trusts for people with special needs. The long-term purpose is to establish a foundation for decision-making; the short-term effect has been to provide an increased level of comfort and peace of mind for parents. PARENTAL RESPONSIBILITIES

1. Ascertain and consider those characteristics which define their child's uniqueness and individuality, including but not limited to:

a. likes, dislikes, hopes, fears, desires and dreams;

b. physical, emotional and mental condition, and

c. functional abilities and limitations.

2. Encourage their child to make choices, among available alternatives, and participate in decisionmaking with appropriate deference to their child's expressed preferences.

3. Encourage the development of skills which maximize their child's academic, social and vocational potential as well as promote self-reliance, independence, self-care and self-advocacy. This allows the child to perform in as normal and least restrictive environment as may be consistent with his safety and ability to enjoy life. It also generally enhances the ability of their child to function in an environment which is least restrictive of his social and personal development considering his health, safety and happiness.

4. Protect their child from injury, exploitation, undue influence and abuse.

5. Promote and preserve their child's human rights, including the right to privacy, dignity and respect.

The child with a disability must be allowed to develop independence and an identity as an individual in an atmosphere which, although mindful of risk, assists and promotes change and growth. By anyone's definition, success in life is a reasonable goal for virtually all children.
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Author:Dickman, Emerson
Publication:The Exceptional Parent
Date:Nov 1, 1989
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