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Special Education Articles: Parenting Articles: The Journey

Taken from The Unplanned Journey:
When You Learn That Your Child Has a Disability

NICHCY News Digest Second Edition February 1997
Authors: Carole Brown, Samara Goodman, and Lisa Kupper

"Growth is endless and our lives change and change us beyond anticipation. I do not forget the pain - it aches in a particular way when I look at Jessy's friends (her paid companions), some of them just her age, and allow myself for a moment to think of all she cannot be. But we cannot sift experience and take only the part that does not hurt us." (Park, 1988, p . 320)

No parent wants his or her child to be sick, disabled, or harmed in any way. It is not an experience anyone expects to have; rather, it is a journey that is unplanned. The terrain families must travel is often rough in places. The stress families may experience because of their child's disability may be the most difficult of their lives and often affects important aspects of family functioning (Mahoney, O'Sullivan, & Robinson, 1992). And yet, the majority of families are able to find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany their child's illness or disability.

Many parents have described the progression -- and pendulum -- of feelings they experienced upon learning that their child has an illness or a disability. Patty McGill Smith touched upon many of these emotions in her article -- shock, denial, grief, guilt, anger, confusion. Not all parents will experience all of these emotions (Blacher, 1989). Some families feel that they experience no more greater sorrow than any other person, while others feel a sense of sorrow that is never completely resolved (Coleman, 1990). Still others feel that these reactions are not necessarily experienced sequentially but may, in fact, occur repeatedly, precipitated by various life crises and turning points (Wikler, Wasow, & Hatfield, 1981). Usually the first crisis is when a child is initially identified as having a disability. Other crises may occur during times of transition, such as (1) at school-entry age, (2) during adolescence, (3) when leaving school, and (4) when parents grow older. (Seligman & Darling, 1989)

The type of emotions parents experience, as intense and overwhelming as they may be, are also normal and acceptable. Parent Rhonda Krahl writes that "these feelings and others are a necessary part of the adjustment process" (Krahl, 1989, p. 6). However, through whatever means of adjustment each parent finds -- and these will vary from person to person -- stability does return, both to the individual and to the family. Tobi Levin points out, "Most parents eventually go from asking 'why' to 'what do I do now?'" (Levin, 1992, p. 3). At this point, parents may begin to search for needed information. Many parents also report feelings of personal growth that are often, in retrospect, astounding to them. One mother, describing the first two years of life after the birth of a child with spina bifida, said:

"I can now admit that having Laura is mostly a blessing...much of the experience has been positive, challenging, and rewarding, and I have grown as a person in ways I may not have without her...In fact, the past two years have changed me for the better in just about every way. Nevertheless, I still don't want to be the mother of a handicapped child. But I am Laura's mother, I love her deeply, and that makes all the difference." (Sutton, 1982, p. 213)

Taken together, the many suggestions and insights offered by parents who have lived for years with the experience of disability in the family can provide parents who are new to the experience with much guidance and support. The remainder of this article will outline many of the ways that parents have helped themselves and those they love adjust to living with and caring for a child with special needs.


One of the first things you can do that may prove enormously helpful, now and in the future, is to collect information -- information about your child's disability, about the services that are available, and about the specific things you can do to help your child develop to the fullest extent possible. Collecting and using the information available on disability issues is a critical part of being a parent of a special needs child. Fortunately, there is a great deal of information available on many disabilities and many disability issues. Parents often report, however, that at first they did not know where to begin searching for the information they needed.

Joining a Group

Much of the information that will be helpful to you is in the hands, heads, and hearts of other parents like yourselves. For this reason, it is worthwhile to join a parent's group, which can offer you the opportunity to meet other people with children who have disabilities. Some groups are organized around one particular disability (e.g., cerebral palsy, Tourette syndrome, Down syndrome), while other groups draw together parents who, irrespective of the disabilities of their children, have similar concerns, such as daycare, transportation, coping, or finding out about and supporting special education in their community. Within each of these groups, information, emotional and practical support, and common concerns can be shared. The power of this mutual sharing to combat feelings of isolation, confusion, and stress is a consistent thread running throughout the literature written by and for parents.

" belonged to [a] group of moms and from them came the reassurance that I was going to be okay...Here I could let it all hang out. We talked about resentment at mismanaged pregnancies and birthings; frustration with case managers that didn't manage, doctors who didn't listen, and spouses who didn't help. This was a safe place to express my feelings where the listener would really understand and wouldn't think I was "falling apart" or "still grieving" or "not handling it too well." We laughed together. We cried together. Even though our children had different disabilities, we were alike: Alike in our anger, alike in our fear, alike in our hope." (McAnaney, 1992, pp. 17-18)

There are many ways to identify a parent group in your area, including asking your family doctor, calling a local school, contacting the state or local parent training and information (PTI) center, and looking in the telephone directory. NICHCY's A Parent's Guide to Accessing Parent Groups describes a process for finding (or starting) a group suited to your particular interests and needs; NICHCY also makes available a State Resource Sheet for each state, which provides information about parent groups within the state.

Reading Books Written for and By Parents

You may also find it worthwhile to read many of the excellent books that are available on disability issues. A good starting point for identifying the book or books most suited to your family's needs is A Reader's Guide for Parents of Children with Mental, Physical, or Emotional Disabilities by Cory Moore (1990), which includes annotated descriptions of more than 1,000 books and articles on disabilities. Although this book is currently out of print, you may be able to find a copy in your local library, a parent resource room, or the lending library of a local chapter of many disability groups. A new version of the book -- The Special-Needs Reading List: An Annotated Guide to the Best Publications for Parents and Professionals (Sweeney, in press)-- is scheduled for release mid-year 1997. In the meantime, there are also many shorter bibliographies available. Worthwhile suggestions for reading can come as well from talking to a local librarian, your child's teacher, or other involved professional; contacting a national, state, or local disability group; talking to other parents of children with disabilities; or by contacting NICHCY.

You may also wish to obtain information about your child's disability and other medical issues, such as how to choose a doctor and obtain needed medical services. NICHCY's Parent's Guide to Doctors, Disabilities, and the Family is a useful beginning point, for it contains many suggestions for finding and interacting with doctors when there is a child with a disability involved.

Many children, however, have problems that are difficult to diagnose. Parents may be told, "It's nothing and will go away. You're overreacting. It's a stage" (Finston, 1990, p. 28). These parents "will need stamina, patience, and unusual resources to find out what is wrong with their child. That label may not come easily, but if parents don't pursue it, most likely no one else will" (p. 29).

If you are having trouble obtaining a diagnosis for your child, one mother who searched for years for a diagnosis of her son's condition recommends that you:

  • keep accurate records that can provide a clue to the problem;
  • talk to others (nurses, doctors, teachers, pharmacists, parent groups, local medical board) who may be able to offer valuable information, leads, or assistance;
  • research the problem on your own, through reading books and articles, conducting computer searches, and utilizing interlibrary loan materials; and
  • trust your own observations and evaluate new information based upon your own knowledge of the child. (Finston, 1990, p. 7-9)

For those who have an early, accurate diagnosis of their child's disability, the search for information is generally easier. There are many books available that look comprehensively and in-depth at one disability. Typically, these books describe the disability, discuss the family's adjustment, identify medical issues, provide guidance about dealing with medical practitioners and developing appropriate therapy programs, discuss daily life, describe how a child with that disability might be expected to develop, and address educational implications and legal issues. A short list of such books, organized by specific disabilities, is provided in the resource section of this News Digest.

Accessing Services

The search for available services is a challenge for families and one that continues as the child's needs change. Most of these services are made available because of legislation at the federal and state levels. Because a core of laws affects the services that are available, how and to whom those services are provided, and the process of obtaining the services, it becomes essential for families to be informed about their legal rights. Many of the guides listed in the references and resources section of this News Digest provide overviews and guidance in relation to the legal and educational rights of children and youth with disabilities. For a quick read on the core of federal laws governing the educational rights of children and youth with disabilities, NICHCY offers "The Education of Children and Youth with Special Needs: What do the Laws Say?" and "Questions and Answers about the IDEA."

Typically, there are many services available within communities, districts, and states to assist you in meeting the needs of your child with disabilities and your family. For families with a young child -- birth through the third birthday -- with disabilities, it may be critically important to access early intervention services, which are designed to identify and treat developmental problems as early as possible. For school-aged children with disabilities, special education and related services can be important factors in addressing a child's educational needs.

Early intervention services. Early intervention services are designed to address the needs of infants and toddlers with disabilities as early as possible and, as such, can range from feeding support from a nutritionist in a hospital to developing a complete physical therapy program for an infant with cerebral palsy. However, these services are not just for the child with special needs. When framing the law describing early intervention services, Congress recognized that families are central in a young child's life. Therefore, the family's priorities, concerns, and resources have become the foundation for planning services for infants and toddlers with disabilities. The plan that is developed through this process is called an Individualized Family Service Plan (IFSP).

Parents, too, can benefit from early intervention services; as full members of the team developing the program for their child, they can learn skills that may be useful for a long time -- skills in decision-making, planning, being of support to others, and influencing the policy-making process in their communities. Giving testimony before the Senate on the value of early intervention services, one mother stated:

" ...Children, and the families that love and nurture them, have needs that cannot be easily compartmentalized. Especially in early childhood, a family's priorities may be rapidly changing and may cross over numerous "systems" boundaries. As I recall the hours of early intervention our daughter received, the most valuable lessons were based on recognizing her worth as an individual, taking into account our abilities, as her parents, to seek out ways to encourage her growth and development and, finally, reaching out to other families with children, with or without disabilities, to participate in mutually supportive relationships that meet the needs of each individual in the family as well as the community." (Behr, 1991)

The services themselves are offered through a public or private agency and are provided in different settings, such as your home, a clinic, a neighborhood daycare center, a hospital, or the local health department. Initial evaluation and assessment of your child will be provided free of charge. Services may also be provided at no cost, although this may vary from state to state; some states charge a "sliding-scale" fee based upon what you, as parents, earn.

It is important to know that some states are still in the process of developing these services. Therefore, depending upon the state in which you live, early intervention services may be fully available or may still be in the process of developing. Every state now has developed a central directory of early intervention services, and many states will provide service coordinators to help parents find services for their child. Your family physician, hospitals, or a specialist working with your child can also be important resources of information, as can the NICHCY State Resource Sheet, which identifies the name and telephone number of your state's contact person for programs for infants and toddlers with disabilities.

Special education and related services. Through the mandates of a number of federal laws -- most notably, the Individuals with Disabililties Education Act, or IDEA (formerly known as the Education of the Handicapped Act, EHA, or Public Law 94-142) and Section 504 of the Rehabilitation Act of 1973 -- each eligible child with special needs is guaranteed a free, appropriate public education designed to address his or her unique needs. This education is planned by a multidisciplinary team, including the parents of the child. In order to benefit from this special education, the child may also need to receive a variety of related services (e.g., transportation assistance, occupational and physical therapy, audiology, school health services, speech-language pathology, and psychological services). These, too, are to be provided by the school to eligible children at no cost to their families.

Thus, as parents, you are key participants in the team that determines what type of special education your child will receive, as well as what related services are necessary to help him or her maximize the benefits of that special education. Together, the members of your child's team develop an Individualized Education Program (IEP), which states in writing the educational program that is planned for your son or daughter, including learning goals and the educational services that the school system is to provide.

There are many books that can be of particular usefulness if you are seeking to understand and access special education. Additionally, many of the parent guides mentioned throughout this issue discuss how to access these services and advocate for the legal and educational rights of a child. Material is also available from NICHCY to explain the special education process.

NICHCY News Digest Second Edition February 1997
Parenting a Child with Special Needs: A Guide to Readings and Resources

National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
1-800-695-0285 (Voice/TT)
E-mail: nichcy@aed.org
Web site: http://www.nichcy.org/

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