Parenting A Child With Special Needs: A Guide To Readings And Resources

Part 4

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National Information Center
for Children and Youth with Disabilities

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Supporting And Empowering The Family

Parents as Individuals and as Partners

There are a number of vital factors within each family which will influence its ultimate well-being. One is the emotional and physical health of each parent individually. Because it is generally the parents who confront the issues associated with their child's disability (e.g., dealing with medical practitioners, caring for the child), while simultaneously trying to maintain the household (e.g., holding down jobs, shopping, cooking, cleaning up, taking care of other children), it is not surprising that many parents of children with disabilities report times of feeling overwhelmed. It is, thus, very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, trying to exercise every day, even if it is just taking a short walk (Callahan, 1990). As one mother relates:

"I would sometimes retreat to my "tower" and pretend that I had no responsibilities other than to amuse myself with a good book or a soothing tape. The respite usually didn't last more than a half hour, and it was never enough, but it helped me break the "martyr" pattern of thinking I was required to live and breathe only for my children.

In those brief moments of quiet reflection I could renew my sense of self and remember that I was important, too; that I was Kate, a person, with lots of abilities and interests that did not all coincide with my role as Mommy. I came to realize that a little selfishness is not a bad thing. If I could enjoy myself more, I could enjoy my children more." (McAnaney, 1992, p. 22)

This sentiment is echoed throughout most of the literature written by parents. As Rhonda Krahl remarks, "What your child needs most is a healthy, loving parent. You can give him that by taking care of yourself" (Krahl, 1989, p. 7).

Many families will be single-parent families, but for those who are not, the relationship between the parents is a factor that can influence the family's well-being. When the parents' relationship is a strong and supportive one, it enriches family life for all members. Conversely, when there are problems in the relationship, the tension affects the rest of the family as well. This is stating what most of us already know, as is saying that marriages undergo change with the birth of a child -- any child. But when a child in the family has special needs, "the changes (in the marriage relationship) will be greater and more demanding" (Krahl, 1989, p. 11). For a number of reasons, parenting a special needs child can create stress and conflict between the parents. For one, fathers and mothers may react differently to the fact of the disability. Mothers typically respond more emotionally than fathers, who are apt to focus more on the future and the long-term concerns of the child (Lamb, 1976). At times, one parent may be actively experiencing grief and may feel alone if the other parent is unable to express his or her grief and sorrow (Featherstone, 1980). At other times, decisions must be made about the child's care, and parents may not agree. And when all is said and done, the sheer demands of parenting can leave each partner exhausted and drained. "With all the time you must spend with and for your child, it's easy to forget to take time for your mate...You can easily lose track of what your mate is thinking, feeling or doing as you concentrate on keeping up with family routines" (Krahl, 1989, p. 12).

Much of the literature written by parents discusses ways for parents to protect their relationship. One point emerges again and again, and that is the importance of making time for each other: meeting for lunch, getting away for a few hours together, sharing an activity. "This isn't neglecting your responsibilities. If the relationship crumbles you will face even more duties. Taking time to preserve your relationship makes good, practical sense, even if something else has to suffer temporarily" (Krahl, 1989, p. 14). Talking to each other and really listening are also important -- and conversations do not always have to revolve around the children in the family. Finding other topics to discuss can do much to revitalize parents and preserve intimacy between them. It is also important to recognize that there are times when one partner needs to have space. As Peggy Finston (1990) puts it, "We need to accept how our mate distracts himself or herself" (p. 58). Sharing the duties of providing care is also necessary, although couples report that they often have to work hard at communicating in order to achieve the "we-ness" that goes behind teamwork. Many parents have found it is necessary and helpful to seek joint counseling. Through this process, they grew to understand each other's needs and concerns more fully and found ways of discussing and resolving their differences.

Brothers and Sisters: The Sibling Story

We know from the experiences of families and the findings of research that having a child with a disability powerfully affects everyone in the family. This includes that child's brothers and sisters. Many authors and researchers have written with eloquence about how the presence of a disability affects each sibling individually, as well as the relationships between the siblings. Some books dealing with sibling issues are listed in the resources section of this document.

The impact, according to the siblings themselves, varies considerably from person to person. Yet there are common threads that run through their stories. For many, the experience is a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with a disability, often assuming responsibilities beyond their years in terms of that individual's care and the maintenance of the household (Powell & Gallagher, 1993). It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with special needs or to experience feelings of great joy in watching him or her achieve even the smallest gain in learning or development. Increased maturity, responsibility, altruism, tolerance, humanitarian concerns and careers, a sense of closeness in the family, self-confidence, and independence are among the other positive effects noted in siblings (Lobato, 1990).

In contrast, many other siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents' energy, attention, money, and psychological support flow to the child with special needs (Lobato, 1990; Powell & Gallagher, 1993).

The reaction and adjustment of siblings to a brother or sister with a disability may also vary depending upon their ages and developmental levels. The younger the nondisabled sibling is, the more difficult it may be for him or her to understand the situation and to interpret events realistically (Ambler, 1988). Younger children may be confused about the nature of the disability, including what caused it. They may feel that they themselves are to blame or may worry about "catching" the disability. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children.

Clearly, it is important for you to take time to talk openly about your child's disability with your other children, explaining it as best you can in terms that are appropriate to each child's developmental level. As Charles Callahan (1990) remarks, "Information, even concerning a painful subject, is preferable to ignorance distorted by imagination" (p. 157) Some of the books listed in the resources section under "Siblings" can help you open up the lines of communication and address the needs of your nondisabled children. As services for families grow, you may also find there is a support group available to your children, which can provide a forum for siblings to share their feelings with others in a similar situation and to exchange factual information about disability and illness.

The Child with Special Needs

Much of how you raise your child with a disability will depend on your family's personal beliefs about childrearing, your child's age, and the nature of his or her disability. An important point to remember is that most of the regular child-raising issues will apply -- children with disabilities will go through the usual childhood stages. They may not go through stages at the same age, at the same rate, or use the same words as children without disabilities, but they are children and kids are kids.

We, as parents, may believe that all children should be treated the same, but in practice that is usually not the case. Why? Because anyone who has been around children, even infants, knows they have different personalities and react differently to similar situations. We encourage and coax the shy child and set limits for the rambunctious one. We tell the loud ones to be quiet and the quiet ones to speak up. We offer different activities to the child who loves to paint than to the one who wants to play ball. Children just are not the same -- but they should have the same opportunities.

Among their opportunities should be the chance to assume increasingly greater degrees of responsibility and independence. There may be many ways in which your child can help himself or herself or other members of the family, including doing chores around the house. You will need to consider what these activities might be, given your son or daughter's disabilities and capabilities. As you expect and encourage your child to assume responsibility, his or her sense of pride and competence will also increase. As Ivonne Mosquera remarks:

"Even though I'm blind, even though it may take me a bit longer to do certain things, I can still do them...Once you accomplish a goal, you'll be the person who feels good about it. Whether or not other people congratulate you for it, you'll feel better, and you'll know that you did it because of you -- because you never gave up." (Krementz, 1992, p. 37)

Conversely, to not expect or encourage your child to contribute to self-care or household matters may send the message that he or she is not capable of helping. Dependence is fostered instead, as Teresa discovered with her daughter Betsy. "First, they were little things like turning on the bathwater. Then she wanted me to carry her instead of using crutches. She refused to even try using them. I couldn't make myself say no, yet I knew that somehow this was going too far." (Finston, 1990, p. 72)

Of course, the nature and severity of your child's disability may affect how much he or she is able to participate in household duties and so on. Peggy Finston (1990) remarks:

"The issue, then, for each of us is what is a "realistic" amount of normality to expect from our child? If we expect too much, we run the risk of rejecting him as he is. If we expect too little, we will fail to encourage him to do the most he can with himself. There is no one answer for all of us, or even for all of us dealing with the same condition. The best we can do is to realize that this is an ongoing question that we need to consider." (p. 81)

Perhaps some of the most encouraging words for parents come from children who have disabilities, whose experiences and feelings are described in numerous books. One consistent idea they express is that when parents expect a child with a disability to develop his or her capabilities -- whatever these may be -- this empowers and strengthens the child. This sense of empowerment can be found, for example, in the dedication Tom Bradford wrote for his book about hearing loss; he dedicated the book to his mother "who never let me know that my hearing loss could have been a limitation" (Bradford, 1991, p. iii). Eli, a twelve-year-old whose stroke resulted in several physical disabilities, writes, "My friends and family helped me overcome my fears. They encouraged me to try everything, even if I was determined that I couldn't" (Krementz, 1992, p. 16). Fourteen- year-old Sarah says that, despite her artificial leg, "my parents sent me to a regular nursery school, to swimming lessons and camp -- everything other kids did...I think my family's encouragement has a lot to do with the fact that I have such a positive attitude. They never sat me in front of the TV or stopped me from doing anything I wanted to try. They gave me a normal childhood" (Krementz, 1992, p. 83). Robert, who has cerebral palsy, remembers that his mother said to him one day, "Robert, why don't we focus on what you can do instead of what you can't do?" This was, he believes, "my biggest turning point -- I took off like a rocket!" (Kriegsman, Zaslow, & D'Zmura-Rechsteiner, 1992, pp. 43-44)

Grandparents

Grandparents are often greatly affected by the birth of a child with a disability; the pain they feel may be two-fold -- pain for their grandchild and pain for you, their own child. It is important to remember that they will need support and information, too, and that "the way you relate to them can create the setting for how they will help or not help you, or how they will deal with the child" (Routburg, 1986, p. 32). Some grandparents may have difficulty accepting their grandchild's disability, which is as normal as the stage of denial parents themselves may have experienced. Others will be a great source of help and support, and their involvement can benefit the nuclear family. (Seligman & Darling, 1989)

Therefore, your parents and other members of the extended family need to be given opportunities to get to know your child as a person and not just a person with disabilities (Routburg, 1986, p. 32). Allowing them to become involved with your child may also allow you some much-needed time away from the responsibilities associated with caring for a child with special needs.

Child Care: From Babysitters to Respite Care

All parents, at some time, will probably seek child care. For families with a child who needs more supervision or specialized assistance, child care may be difficult to find -- or feel comfortable with. However, even if you do not work outside the home and do not need regular child care, you may benefit greatly from having child care on a periodic or even an ongoing basis; this will give you time to take care of personal matters, enjoy some leisure activity, or be relieved of the constant need to care for a child with a disability or chronic illness (Cernoch, 1996). Indeed, families who use child care on a regular basis report that it "not only gave us something to look forward to but also broke time down into pieces we felt we could handle" (Callahan, 1990, p. 175). Child care, particularly following a crisis, may be an essential factor in maintaining your family's health, stamina, and equilibrium. The mother of a child with a chronic illness writes:

"The week that our family stayed at the beach was the most wonderful gift... it gave us the opportunity to stand outside the situation and view it from a distance. It enabled us to review what had gone on before, to put things into perspective, think and plan. We were also physically restored, and were able to go on with much more strength...caring for our daughter." (Cernoch, 1996, p. 2)

Basically, child care falls into several categories, ranging from the care provided by relatives, neighbors, or friends who help out, to babysitters, to the more specialized care provided through daycare facilities/providers, respite care services, and nurses/medical specialists. Each family will need to determine its own level of need at any given time. The type of child care you select will depend upon a number of factors, including the nature of your child's disability, the cost involved in the care, and the length of time for which the care will be provided. If your child requires more supervision or attention than normal but does not need specialized medical care per se, you might have a relative, family friend, or a responsible babysitter occasionally take care of your son or daughter with special needs.

Day care also can be important for the well-being of children with disabilities, because it presents an opportunity for them to socialize with other children. Parents often want their child with disabilities to have the same opportunities as other children and have been disappointed to find that many daycare or preschool settings were not available or accessible to youngsters with disabilities. This kind of discrimination is now illegal. The Americans with Disabilities Act (ADA) calls for full access to daycare for children with disabilities. In some cases, the needs of a child will be such that a particular daycare provider or center may not be equipped to care adequately for that child. The law now provides for flexibility in these cases; often, parents will have to be resourceful to help a provider become equipped or knowledgeable about how to care for the needs of a child or to find other sources of help.

You can help daycare providers by being as honest and direct as possible about your child's needs. It may also be helpful to let providers know how much their care is needed by and supportive to your child. The partnership between parents and daycare providers is very important, but it is especially so when the child has a special need. Research has shown that preschool and child care centers have the most success in integrating children with disabilities when staff accept and value diversity in the children they serve (Peck, Odom, & Bricker, 1993).

Another option is respite care, a system of temporary child care provided by people familiar with the needs of children with disabilities. "Temporary" can range from an hour to several months, depending on the respite care provider and the needs and desires of the family. Many respite care providers have undergone specialized training and can knowledgeably care for children whose needs may range from close supervision to medical care. Respite care can be provided to infants, teenagers, or adults with special needs. In some cases, the respite provider may be able to provide care only for the child with the disability; in other cases, care may be available for siblings as well. Respite care generally differs from daycare in that it is not available on a daily basis to allow a parent to return to the work force.

Increasingly, respite care can be obtained through organizations that offer home-care or out-of-home services, either on an emergency basis or on a regular schedule. In many states, mental health agencies provide services which are either free of charge or priced on a sliding scale (according to parents' ability to pay). To find out more about the respite services available in your vicinity, seek out groups or professionals who work with children your child's age. The school system may be able to provide information, as may a local parent group. Other places to inquire include:

• Parent Training and Information Center;
  
  
• Disability organizations within the state;
  
  
• State Department of Mental Retardation;
  
  
• State Developmental Disabilities Council;
  
  
• State Program for Children with Special Health Needs;
  
  
• Departments of Health and Human Services, or Social Services;
  
  
• Department of Mental Health;
  
  
• State and local Departments of Education; and
  
  
• State Protection and Advocacy Agency.
  
  

Many of these organizations are listed in the telephone directory; NICHCY also makes available a State Resource Sheet, which lists telephone numbers and addresses for many of these programs or groups. Although many parents initially may feel reluctant to leave their child with special needs in the care of someone else, those who have tried it give ample testimony to its value in restoring their energy, sense of humor, and perspective.

Working With Professionals: The Parent/Professional Relationship

Parent Cory Moore, speaking directly to professionals, writes, "We need respect, we need to have our contribution valued. We need to participate, not merely be involved. It is, after all, the parent who knew the child first and who knows the child best. Our relationship with our sons and daughters is personal and spans a lifetime." (Moore, 1993, p. 49)

Recognizing the central role of the family in a child's life, many service systems now provide assistance to parents and other family members using what is known as family- centered support principles (Shelton, Jeppson, & Johnson, 1989). Within this philosophy, the family's influence is recognized as primary, both because of its direct impact on the child's development and because the family serves as the link between the child and the outside world. Thus, you have the right to be fully informed and involved in decisions affecting your child and family.

Many of the books listed throughout this News Digest offer insight into how you might work together with professionals for the benefit of your child and family. The best relationships are characterized by mutual respect, trust, and openness, where both you and the professional exchange information and ideas about the best care, medical intervention, or educational program for your child. Information also must be exchanged about the needs of your family and about ways to take advantage of helping patterns that already exist within the family. (Fewell & Vadasy, 1986) Both you and the professional need to speak clearly about issues and listen carefully. Indeed, both of you have important expertise to share.

You, for example, have intimate knowledge of your child with special needs; you live with and observe your son or daughter on a daily basis and can contribute invaluable information about his or her routine, development, history, strengths, weaknesses, and so on. To make an accurate diagnosis, determine appropriate therapy or other interventions, and understand both your child and the needs and resources of your family, the professional needs your perspective and unique insight.

The professional, too, has specialized knowledge to contribute -- that of his or her discipline. Often you must rely upon the judgment of the professional in matters that are critical to the well-being of your child, a position that may make you feel on unequal and uncertain footing. How comfortable you feel with the professional, how well you feel that individual relates to your child, and how openly he or she responds to your concerns and input will, in many cases, determine whether you continue to work with the professional or decide to seek the services of another.

Thus, there should be a mutuality in the parent/professional relationship. Both parents and professionals need to trust and feel trusted, both need to admit when they do not know or are wrong, and both need to negotiate with each other (Finston, 1990). Trust, respect, and open communication between parent and professional are, therefore, essential to building a good,working relationship. This can take time to develop and may require effort from both parties. To that end, many parent writers suggest:

• If you are looking for a specialist with whom you can work well, ask other parents of children with disabilities. Often, they can suggest the name of a good speech or physical therapist, doctor, dentist, surgeon, and so on.
  
  
• If you don"t understand the terminology a professional uses, ask questions. Say, "What do you mean by that? We don"t understand."
  
  
• If necessary, write down the professional's answers. This is particularly useful in medical situations when a medication or therapy is to be administered.
  
  
• Learn as much as you can about your child's disability. This will assist you with your child, and it can help you participate most fully in the team process.
  
  
• Prepare for visits to the doctor, therapist, or school by writing down a list of the questions or concerns you would like to discuss with the professional.
  
  
• Keep a notebook in which you write down information concerning your special needs child. This can include your child's medical history, test results, observations about behavior or symptoms that will help the professional do his or her job, and so on. (A loose-leaf notebook is easy to maintain and add information to.)
  
  
• If you don't agree with a professional's recommendations, say so. Be as specific as you can about why you don't agree.
  
  
• Do whatever informed "shopping around" and "doctor-hopping" is necessary to feel certain you have explored every possibility and potential. As Irving Dickman (1989) says, "Shop. Hop. Hope" (p. 100).
  
  
• Measure a professional's recommendations for home treatment programs or other interventions against your own schedule, finances, and other commitments. You may not be able to follow all advice or take on one more thing, feeling as Helen Featherstone (1980) did when she wrote, "What am I supposed to give up?...There is no time in my life that hasn't been spoken for, and for every fifteen-minute activity that has been added, one has to be taken away" (p. 78). Peggy Finston (1990) points out that "most professionals won't be familiar with the sum total of our obligations and will not take it upon themselves to give us permission to quit. This is up to us. It's in our power to make the decision" (p. 188).
  
  

In conclusion, it is important that the parent/professional relationship empower the parent to be a full participant in information-gathering, information-sharing, and in decision- making. However, it is ultimately up to you to decide what role(s) you want to take in this process and what role(s) you need help with. It is helpful to know that families do, indeed, choose different roles in relationship to professionals. Some parents want to allow professionals to make most decisions about their child, others want to serve as an informant to the professional, some want veto power, and some parents want a shared role in the intervention with their child (McBride, Brotherson, Joanning, Whiddon, & Demmit, 1992).

You are also free to change your mind about the role or level of involvement you may want or be able to assume regarding your child's services. You may find that you choose different roles at different times for different purposes. Be as direct as possible about what you want or don't want to take on in this regard.

Addressing Financial Concerns

The expenses associated with raising children can stretch a family's resources. When a child has a disability, particularly one that involves high-priced medical care, a family can quickly become overwhelmed financially. While it is often difficult to resolve financial concerns completely, there are a number of things parents can do that may help. Charlotte Thompson recommends that, as soon as parents find out that their child has a disability, two actions should be taken immediately. These are:

• Start a program to organize and manage your new financial demands. "This not only means management of everyday money, but it also means keeping very careful track of your medical bills and payments" (Thompson, 1986, pp. 101-102). There are a number of money management guides available that explain how to do this.
  
  
• Seek information about any and all financial assistance programs. "If the state agency caring for handicapped children is contacted immediately, it may be able to assume financial responsibility for your child's care right from the start" (Thompson, 1986, p. 102).
  
  

Often, so much attention is focused on the provision of health care that doctors and other medical staff may not mention available sources of financial aid. Many states have passed legislation intended to help families of children with a disability address their financial concerns, but parents will need to be "well focused and persistent" to get the answers they need.

Many children with disabilities are eligible to receive Supplemental Security Income (SSI) benefits, based upon their disability. A recent Supreme Court decision (Sullivan v. Zebley) has created changes in the eligibility requirements for these benefits. Because of these changes, many more children are now eligible than in the past. Some children who formerly were denied benefits (i.e., after January 1, 1980) may even be eligible for back benefits. Therefore, it is a good idea for all families with a child who is blind or who has a disability to apply for SSI. If a child is found eligible for SSI, he or she is automatically eligible for Medicaid benefits, even if the family income is higher than what is traditionally required for Medicaid in that state. This is very important for children with disabilities who may have many medical needs. (Clark & Manes, 1992)

If your child qualifies for Medicaid, most early intervention services can be paid for by Medicaid. If your child qualifies for Medicaid, it is important to have him or her assessed by a provider qualified to perform the Early Periodic Screening, Diagnostic, and Treatment (EPSDT) program. If an EPSDT program determines that your child has a condition that requires treatment because of "medical necessity," then it can be paid for by Medicaid. Furthermore, each state has a "Child Find" system, which is responsible for locating and assessing children with disabilities. This is required to be free by Federal law. But sometimes, even though there is not supposed to be a waiting list, it can take a long time to get your child assessed. Therefore, it is important to know about what other resources can be used to get help for your child.

Private insurance benefits are one such resource. Usually, nursing, physical therapy, psychological services, and nutrition services can be reimbursed by private insurance. In some cases, occupational therapy and speech therapy are also reimbursable. Educational expenses related to a child's disability are only rarely covered by insurance. However, it is useful to keep track of educational expenses, because these are deductible on your Federal income tax returns.

Some additional resources to contact in your search for financial assistance include:

• Hospital social workers;
  
  
• Public health department;
  
  
• Public health nurses;
  
  
• Volunteer agencies;
  
  
• Disability organizations; and
  
  
• State government agencies (usually listed under "State Government" in the telephone book), particularly those departments that oversee programs for children with disabilities.
  
  

Because searching for assistance may involve a lot of telephone calls, it is a good idea to have paper and pen at hand to record the names and telephone numbers of all those you contact, as well as any referrals they give you. Whether or not you believe your income is too high for your family to quality for financial aid:

"...the key is to keep trying -- to get more information, to follow up leads, and to continue applying for various types of financial assistance. This may seem like an endless paperwork maze to you, but with luck some of the paper at the end will be the green kind that can help you pay your child's medical bills. Keep at it." (Thompson, 1986, p. 103)

Future Planning

It is not possible for parents to imagine all the stops and detours that they will make as their unexpected journey takes them into the future. But you will probably be thinking at different times about what the future holds for your child. Advocates believe it is important for parents to have expectations about what their child with disabilities can achieve in the future and to encourage their child to develop as much independence as possible, given the nature and severity of the disability (Dickman, 1993).

Over the past 20 years, the options for children and adults with disabilities have greatly expanded. Schools have developed specialized educational techniques to promote learning and the acquisition of functional skills that will enable individuals with disabilities to have choices about where they live, work, and play, and who they have as friends. The movement to include individuals with disabilities in the mainstream of school life is growing, with significant pressure coming from parents. The premise behind inclusion is that individuals with disabilities should not be segregated but, rather, should have the same opportunities that individuals without disabilities have -- that is, the same opportunities to go to neighborhood schools, to be educated alongside their nondisabled peers, to participate as fully as possible in school activities. However, for inclusion to work, school systems must provide each student with supports appropriate to his or her needs. Support, training, and technical assistance also must be made available to teachers and to nondisabled peers. Therefore, it is important for parents to be aware of how inclusion decisions are made in regard to their child and to advocate for supports they feel their child, his or her teacher, and the peer group need in order for the inclusive setting to be a successful one.

Inclusion, however, means more than just including students with disabilities in mainstream school activities. Students will grow up, leave the school setting. What does the future hold for them as adults? This is, naturally, of great concern to parents, disability advocates, disability organizations, and persons with disabilities themselves. For far too long, students have exited the school years to an adult life that lacked opportunities for employment, further education, or community participation (McLaughlin, 1993). Now, with the help of federal legislation and the advocacy of many concerned parties, adult life for individuals with disabilities holds increasing promise. The Individuals with Disabilities Education Act (IDEA) now requires that school personnel, parents, and each student with disabilities (16 years of age or older, and, in many cases, younger) plan for the student's transition from school to post- school environments, including employment, additional education or training, independent living, and community participation (Wandry & Repetto, 1993). This legislation is intended to prepare youth with disabilities for the adult world and roles they will encounter upon leaving high school, with the purpose of maximizing their participation in the mainstream of society. Furthermore, the Americans with Disabilities Act (ADA) has incorporated into law provisions that guarantee many of inclusion's principles as individual rights. No longer may most child care centers refuse to serve children because they have a disability. No longer may a qualified individual be denied employment because he or she has a disability. Public accommodations must now be accessible to all individuals. Many states have been working actively to establish community- based supports so that individuals with disabilities can lead their lives as independently as possible.

Therefore, when you contemplate the future of your son or daughter with disabilities and develop goals for that child, it may be helpful to consider the following suggestions:

• Ensure that your child has the opportunity to acquire skills now that will make him or her as independent as possible in the future.
  
  
• Ensure that your child has opportunities to develop social skills that can be used in a variety of settings (regular classroom settings and exposure to many different environments are useful in this regard).
  
  
• Write a will that will provide for your child's care and safeguard his or her eligibility for government benefits. (For more information about estate planning, request a copy of Estate Planning from NICHCY.) Some states now provide for self-sufficiency trusts which allow parents to leave money to a child with a disability without disqualifying that child (even of adult age) from government benefits. Other states require that a special needs trust be established.
  
  
• Teach your child to be responsible for his or her own personal needs (e.g., self-care, household chores).
  
  
• Work with the school and other agencies to ensure that transition planning for your son or daughter takes place and addresses training for future employment, coordination with adult service providers, investigating postsecondary education or training, and participation in community activities.
  
  
• Help your child develop self-determination and self-advocacy skills.
  
  
• Explore different possibilities for living arrangements once your son or daughter is grown.
  
  

Summary

In this News Digest, we have looked at many of the issues facing you as parents of a child with a disability. Learning that your child has a disability or illness is just the beginning of the journey. At times, you may feel overwhelmed by the challenges associated with disability and by the strength of your own emotions. And while you may feel alone and isolated, there are many supports available. Other parents can be invaluable sources of help and information. Services are also available -- early intervention services for young children, educational services for school-aged children, services available through public agencies that can assist your entire family. Having access to information and supports may be critical in maintaining a stable and healthy family life.

To this end, we urge you to read, to talk to other parents who have a child with a disability, to talk with each other and with other family members, and to reach out for assistance when you need it.

We conclude with the words of Clare Claiborne Park, as she reflects upon the experience and emotions of being a parent of a child with disabilities.

"This experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson of Sophocles and Shakespeare -- that one grows by suffering. And that too is Jessy's gift. I write now what fifteen years past I would still not have thought possible to write; that if today I was given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands -- because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love." (Park, 1988, p. 320)