Childrens Books About Overcoming Disabilities Essay

When You Learn That Your Child Has a Disability

by Carole Brown, Samara Goodman, and Lisa Küpper
A legacy resource from NICHCY
Updated, January 2014

The birth of a child with a disability, or the discovery that a child has a disability, can have profound effects on the family. In “You are Not Alone,” Patricia McGill Smith offers the insights that she and others have gained through their own experience of having a child with a disability. In this article, we will provide additional information to support the life cycle, health, and well-being of the family when a member has a disability.

It is with a great deal of humility that we are even attempting to describe what the future may hold for you and your family. On the one hand, we want you to be as prepared as possible so you can negotiate the challenges that may await your family. On the other hand, we recognize that individual variation and differences are the rule when a child has a disability. Researchers often base their findings on group data—what happens to the majority of people in a circumstance. However, what might be “true” in a research sense may not be at all true for your family. Therefore, while we hope this article will guide you to sources that are helpful, take from our discussion only what you need.

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The Journey

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. (1)

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. 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. The type of emotions parents experience, as intense and overwhelming as they may be, are also normal and acceptable. Stability does return, both to the individual and to the family. Parents begin to search for needed information. Many report feelings of personal growth that are often, in retrospect, astounding to them. One mother, reflecting on life after the birth of a child with spina bifida and other disabilities, says:

I have learned, and grown, more since Dylan’s birth than any other time in my life. You learn patience, and you get to witness miracles that you otherwise would have been too busy to have noticed…You learn acceptance, you realize you have been wrong to judge, and you learn that there is a thing called unconditional love. (2)

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.
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Access Information and Services

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 child with special needs. Fortunately, there is a great deal of information available on many disabilities and many disability issues.

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Join a Group

Much of the information that will be helpful to you is in the hands, heads, and hearts of other parents like yourself. For this reason, it is worthwhile to join a parent’s group. 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.

Our children had Down syndrome, seizure disorder, holes in the heart, premature birth, deafness, and cerebral palsy. I hated the repeat surgeries, but one mother wished her child had a condition that doctors could fix. I struggled with how to respond to strangers, but another mother wanted her child’s condition to be visibly obvious so strangers would understand why she wasn’t doing what other six-month-old babies did..It was powerful to simply congregate with other mothers whose babies had special needs, hear the variation in stories, see the experience refracted through the crystal of multiple identities. (3)

Parent groups aren’t only for mothers, though. Don Meyer writes of running “fathers-only” workshops where fathers came together to exchange insights and trade war stories.

Often the din of the conversation was such that we were asked “to keep it down” by presenters in neighboring rooms. Fathers became so involved in talking to their peers that we sometimes needed to shoo them out of the room at the end of the meetings… All this from fathers who “don’t say anything.” Clearly these men have much to say, and much to offer one another. (4)

There are many ways to identify a parent group in your area. A good starting place is your state’s Parent Training and Information Center, the PTI. Not only can the PTI help you understand your child’s rights, the services available in the community, and how to advocate for your child, this valuable resource can also put you in touch with parent groups locally and in the state.

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Read Books Written By (and for) Parents

You may also find it helpful to read many of the excellent resources—books, articles, Web sites—that are available on disability issues. Some are quoted in this publication. Others are listed on disability fact sheets. Worthwhile suggestions about what to read 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; or talking to other parents of children with disabilities.

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Find Out About 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. For a quick read on the educational rights of children and youth with disabilities, try: Questions Often Asked by Parents about Special Education Services.

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. Families with a young child with disabilities (birth through the third birthday) should 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. These services 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 are a major consideration when 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 helping their child learn and develop, as well as skills in decision-making, planning, being of support to others, and influencing policy-making in their community.

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 or Head Start program, 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 for services.

Special education and related services. Through the mandates of two federal laws—the Individuals with Disabilities Education Act (IDEA) 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 team, including the parents of the child.

Thus, as parents, you are key participants in the team that determines what type of special education your child will receive. 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.

There are many books and websites that are particularly useful if you are seeking to understand and access special education services. This includes the material immediately available here at the Center for Parent Information and Resources to explain the special education process. We’ve listed a few webpages you might like to read to learn more.

_______________________

Overview of Early Intervention
http://www.parentcenterhub.org/repository/ei-overview

Services for Preschoolers
http://www.parentcenterhub.org/repository/preschoolers/

The 10 Basic Steps of Special Education
http://www.parentcenterhub.org/repository/steps/

Evaluating Children for Disability
http://www.parentcenterhub.org/repository/evaluation/

__________________________

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Supporting and Empowering Family

You’re the heart of the family

Many factors can influence the well-being of a family. One factor is certainly the emotional and physical health of the parents. You, as parents, are definitely the heart of the family. You are the ones who deal with the issues associated with your child’s disability—doctors, child care providers, family members, your child’s school, the professionals who work with your child. You also maintain the household — working to pay the bills, shopping, cooking, cleaning up, taking care of other children. Is it any wonder that many parents of children with disabilities report times of feeling overwhelmed?

Therefore, it is very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, taking a short walk, and doing the things that you really enjoy, even if you can only squeeze them in occasionally. 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. (5)

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—that marriages undergo change with the birth of a child, any child. But when a child in the family has special needs, this change may be even more profound. As Kelly Harland puts it, “[H]ow unexpectedly it all unfolds. One moment, you and your lover are singing along in bad Italian with Venetians in a crowded bar…red wine pouring out of nowhere. And the next minute, the two of you are filling out disability forms for your tiny son.” (6)

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. 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 one parent puts it, “Realize that you do not deal with this stress in the same way your spouse does. Let your spouse deal with it in their own way, and try to come to an understanding of your differences.” (7) Another parent shares, “At these lonely moments, the greatest gift was simply to let the other be.” (8)

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. As one parent says, “We steer a rocky ship, my husband and I…We have had to check in with the therapist, sometimes once a year, sometimes once a week. We’ve experienced a hard distance between one another from time to time, as Will in all his complexity takes over every spare second of our lives. We have hung on, though. Our hearts are bonded by something that goes even deeper than love.” (9)

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Brothers and Sisters

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 siblings.

The impact, according to the siblings themselves, varies considerably from person to person. Yet there are common threads that run through their stories. (10) 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. 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. Megan, age 17, says of her life with her brother who has Down syndrome:

Every day Andy teaches me to never give up. He knows he is different, but he doesn’t focus on that. He doesn’t give up, and every time I see him having a hard time, I make myself work that much harder…I don’t know what I would do without Andy. He changed my life…If I had not grown up with him, I would have less understanding, patience, and compassion for people. He shows us that anyone can do anything. (11)

In contrast, many 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. (12) As Angela, age 8, puts it, “[T]here are times when I sit down and think, ‘It’s not fair!’” (13)

And many, many siblings swing back and forth between positive and negative emotions. Helen, age 10, whose sister has severe intellectual disabilities and seizures, begins by saying that she’s glad to have a sister with special needs. “It has opened my eyes to a world of people I never would have known about.” (14) But she also says, “Sometimes I wish I had special needs. I think that a lot when Martha gets ooohed and aahed over and nobody even thinks about me.” (15) And then in the next breath, Helen says, “Another thing is that it really makes me mad when kids slap their chest with their hands and go, ‘I’m a retard!’ It made me so mad!” (16)

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. 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. (17)

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 Robert Naseef remarks, “Just as parents need information, so do siblings, on their level.” (18)

If you’re concerned about sibling issues, have a look at our Siblings page, where you can connect with helpful resources, including support groups available to your children. These can provide an “excellent outlet” for siblings to share their feelings with others in a similar situation. (19)

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Your 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.

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 one mother insists, “Let him do things for himself. Don’t baby him. My father-in-law noticed how Chrissy can manipulate people very well…[His] comment was, ‘Boy, he wouldn’t walk anywhere if he could find someone to carry him all over.’ Yup. That’s why we don’t carry him!” (20)

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 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. (21)

Another issue that may concern you is what (or whether) to tell your child about his or her disability. As with siblings, the child with special needs may also have a need for information and perspective about what makes him or her different.

Now my hug becomes tighter, closer. I feel my breath in his tousled hair.

“Will, do you ever wonder why you get so scared when something comes out of the blue, why it upsets you so much?”

He sniffles. “Yeah.”

I hesitate. I’m feeling terribly warm. I never wanted to introduce my child to the label someone else created for him. And yet an instinct tells me it may help him….(22)

This is how Kelly Harland describes the conversation she had with her son when she told him about his disability, autism.

And now he’s still. He has calmed down. He’s listening.

…And silence, as I try to imagine where to go next. Maybe I’m all wrong. Maybe I should never have used that word. But an odd rush comes over me. It feels like, with this tentative back-and-forth, we’ve suddenly crashed through some floodgate….Has Will known for awhile that he has a problem; has he been waiting for his mom to explain it to him? There is in all this talk something for both of us to hold onto, maybe in this one moment a way to quell the terror, or even rise above it. (23)

As your child grows and matures and especially as he or she edges into young adulthood, it may be very helpful for him or her to be able to discuss the nature of the disability. This includes what special accommodations he or she needs in order to succeed in school and other settings.

You may wish to involve your child in his or her own IEP meeting, which can teach your child useful skills like self-advocacy, expressing personal interests and goals, and being involved in making decisions that affect his or her life. In fact, by law, whenever your child’s transition to life after high school is going to be discussed at an IEP meeting, your child must be invited to attend the meeting. To learn more about transition planning and student involvement in IEP meetings, visit the Transition Suite, which begins at:
http://www.parentcenterhub.org/repository/transitionadult/

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Grandparents (and the Rest of the Family)

Grandparents are often greatly affected by the birth of a child with a disability. “They face the double grief of their grandchild’s disability and their own child’s pain.”(24) It is important to remember that they will need support and information, too. (This is true for other members of the family as well.)

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. Help them to understand your child’s strengths and needs, help them to accept him or her as part of the family. Allowing family members 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.

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Care Givers

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.

You may also benefit from 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.

To find out more about respite services, contact the  ARCH National Respite Network and Resource Center. ARCH operates the National Respite Locator Service whose mission is to help parents locate respite care services in their area. Visit at: http://www.archrespite.org

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.

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Working with Professionals

Over 20 years ago, parent Cory Moore, speaking directly to professionals, wrote:

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. (25)

This sentiment echoes throughout the parent literature and in the hearts of parents everywhere. Not surprisingly, many of the materials written by parents for other parents 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. 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, needs, and so on.

The professional, too, has specialized knowledge to contribute—that of his or her discipline. Often you must rely upon the professional’s judgment in matters that are critical to the well-being of your child.

Thus, there should be a mutuality in the parent/professional 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 recommend a good speech or physical therapist, doctor, dentist, or surgeon.

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” is necessary to find a doctor who understands your child’s needs, is willing to work collaboratively with other medical professionals, and with whom you feel comfortable.

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 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.” (26) Peggy Finston 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.” (27)

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. (28)

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.

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Summary

In this article, 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 through public agencies that can assist your entire family—early intervention services for infants and toddlers and educational services for  preschoolers and school-aged children. Having access to information and supports may be critical in maintaining a stable and healthy family life.

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. (29)

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References

1 | Park, C. (1982). The siege: The first eight years of an autistic child with an epilogue, fifteen years later (p. 320). Boston, MA: Little, Brown. (A sequel to this classic parent book, called Exiting Nirvana, was published in 2001 and continued the story of Jessy into adulthood.)

2 | Hickman, L. (2000). Living in my skin: The insider’s view of life with a special needs child (p. 211). San Antonio, TX: Communication Skill Builders.

3 | McDermott, J. (2000). Babyface: A story of heart and bones (p. 197). Bethesda, MD: Woodbine House.

4 | Meyer, D.J. (Ed.). (1995). Uncommon fathers: Reflections on raising a child with a disability (p. v). Bethesda, MD: Woodbine House.

5 | McAnaney, K.D. (1998). I wish: Dreams and realities of parenting a special needs child (2nd ed.). Sacramento, CA: United Cerebral Palsy Associations, Inc. (Quotation from page 22.)

6 | Harland, K. (2002). A will of his own: Reflections on parenting a child with autism (p. 33). Bethesda, MD: Woodbine House.

7 | Hickman, L. (2000). Living in my skin: The insider’s view of life with a special needs child (p. 246). San Antonio, TX: Communication Skill Builders.

8 | McDermott, J. (2000). Babyface: A story of heart and bones (p. 155). Bethesda, MD: Woodbine House.

9 | Harland, K. (2002). A will of his own: Reflections on parenting a child with autism (p. 33). Bethesda, MD: Woodbine House.

10 | McHugh, M. (2002). Special siblings: Growing up with someone with a disability. Baltimore: Paul H. Brookes.

11 | Meyer, D. (1997). Views from our shoes: Growing up with a brother or sister with special needs (p. 89). Bethesda, MD: Woodbine House.

12 | Lavin, J.L. (2001). Special kids need special parents: A resource for parents of children with special needs. New York: Berkley Books.

13 | Meyer, D. (1997). Views from our shoes: Growing up with a brother or sister with special needs (p. 21). Bethesda, MD: Woodbine House.

14 | Ibid, p. 41.

15 | Ibid.

16 | Ibid, pp. 41-42.

17 | Lavin, J.L. (2001). Special kids need special parents: A resource for parents of children with special needs. New York: Berkley Books.

18 | Naseef, R.A. (1997). Special children, challenged parents: The struggles and rewards of raising a child with a disability (p. 144). Seacaucus, NJ: Birch Lane Press. (A revised edition of this book was published in 2001 by Paul H. Brookes.)

19 | See references 10 and 12 above.

20 | Hickman, L. (2000). Living in my skin: The insider’s view of life with a special needs child (p. 239). San Antonio, TX: Communication Skill Builders.

21 | Finston, P. (1990). Parenting plus: Raising children with special health needs (p. 72). New York: Dutton.

22 | Harland, K. (2002). A will of his own: Reflections on parenting a child with autism (p. 57). Bethesda, MD: Woodbine House.

23 | Ibid, pp. 57-58.

24 | Naseef, R.A. (1997). Special children, challenged parents: The struggles and rewards of raising a child with a disability (p. 157). Seacaucus, NJ: Birch Lane Press. (A revised edition of this book was published in 2001 and is available from Paul H. Brookes.)

25 | Moore, C. (1993). Maximizing family participation in the team process. In L. Küpper (Ed.), Second National Symposium on Effective Communication for Children and Youth with Severe Disabilities: Topic papers, reader’s guide, and videotape (pp. 43–54). McLean, VA: Interstate Research Associates. (Quotation from page 49.)

26 | Featherstone, H. (1980). A difference in the family: Life with a disabled child (p. 78). New York: Basic.

27 | Finston, P. (1990). Parenting plus: Raising children with special health needs (p. 188). New York: Dutton.

28 | McBride, S., Brotherson, M.J., Joanning, H., Whiddon, D., & Demmit, A. (1992). Implementation of family centered services: Perceptions of professionals and families. Unpublished manuscript, Human Development and Family Studies, Iowa State University, Ames, Iowa. (This document is not available.)

29 | Park, C. (1982). The siege: The first eight years of an autistic child with an epilogue, fifteen years later (p. 320). Boston, MA: Little, Brown. (A sequel to this classic parent book, called Exiting Nirvana, was published in 2001 and continued the story of Jessy into adulthood.)

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Activity Sheets

As students read and discuss, they might take notes using one or more of the three graphic organizers (PDFs) we have created for our Text to Text feature, which matches often-taught texts with Times articles and other content.

• Comparing Two or More Texts

• Double-Entry Chart for Close Reading

• Document Analysis Questions

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Text 1: Excerpt from Part Two of R. J. Palacio’s ‘Wonder,’ narrated by Auggie’s sister, Via:

Does August see how other people see him, or has he gotten so good at pretending not to see that it doesn’t bother him? Or does it bother him? When he looks in the mirror, does he see the Auggie Mom and Dad see, or does he see the Auggie everyone else sees? Or is there another August he sees, someone in his dreams behind the misshapen head and face? Sometimes when I looked at Grans, I could see the pretty girl she used to be underneath the wrinkles. I could see the girl from Ipanema inside the old-lady walk. Does August see himself as he might have looked without that single gene that caused the catastrophe of his face?

I wish I could ask him this stuff. I wish he would tell me how he feels. He used to be easier to read before the surgeries. You knew that when his eyes squinted, he was happy. When his mouth went straight, he was being mischievous. When his cheeks trembled, he was about to cry. He looks better now, no doubt about that, but the signs we used to gauge his moods are all gone. There are new ones, or course. Mom and Dad can read every single one. But I’m having trouble keeping up. And there’s part of me that doesn’t want to keep trying: why can’t he just say what he’s feeling like everyone else? He doesn’t have a trache tube in his mouth anymore that keeps him from talking. His jaw’s not wired shut. He’s ten years old. He can use his words. But we circle around him like he’s still the baby he used to be. We change plans, go to plan B, interrupt conversations, go back on promises depending on his moods, his whims, his needs. But he needs to grow up now. We need to let him, help him, make him grow up. Here’s what I think: we’ve all spent so much time trying to make August think he’s normal that he actually thinks he’s normal. And the problem is, he’s not.

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Text 2: Excerpt from Melissa Shang’s ‘Stories About Disability Don’t Have To Be Sad’

I was inspired to take matters into my own hands and write a book of my own, starring a girl with a disability. I knew exactly what genre of book I wanted to write. I’ve never been a fan of “great children’s literature” that was somber or tragic. My friends and I have loved the Cupcake Diaries series, paperbacks with pink covers that described four best friends and their adventures together, making cupcakes. Not exactly heavy stuff, but fun to read. I wanted to write something like the Cupcake Diaries, but starring a middle-school girl with a disability and her filmmaking adventures with her best friends. Instead of making cupcakes, they would make special-effect YouTube videos.

My older sister Eva helped me set up a Kickstarter campaign to hire an editor. We wrote the first draft of the book, called “Mia Lee Is Wheeling Through Middle School,” and found a literary agent. Using our money from our Kickstarter campaign, we hired someone to help us edit our draft into a polished copy, then sent it out to publishing houses.

When the responses started to come in, they were almost all the same: For a girl who was in a wheelchair with a degenerative nerve disease, Mia Lee was just too happy.

“I keep expecting more from the plotline than what’s currently here,” one publisher wrote. “What if it was about sisters who were twins, and one had Charcot-Marie-Tooth and one didn’t? That would create a more important conflict.” Another said that Mia Lee’s character didn’t seem suited for a lighthearted story. Finally, my agent told me, “I just don’t think people are ready for this type of story for this type of character.”

What she meant is that Mia Lee, my sassy, YouTube-loving heroine, differed too much from the convention of what a disabled kid is supposed to be like. There are very few stories about kids in wheelchairs, and there are even fewer with a disabled person who is cheerful and happy. Disability is always seen as a misfortune, and disabled characters are simply opportunities to demonstrate the kindness of the able-bodied protagonists.

For once, I want to see the disabled kids not in the hospital, but in the school cafeteria eating lunch with their friends. I wanted young readers to think of disabled kids not as miserable people to be pitied, but as people living normal lives in spite of their challenges. I want young readers to see disabled kids as friends, people to gossip with, to take selfies with and to go see movies with on the weekends. Not having books that show disability in a lighthearted way makes it harder for everyone else to see disability as a normal part of life.

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For Writing and Discussion

1. What do these passages have to say about how a person with a disability might feel about the concept of “normal”?

2. How do Melissa and Auggie find happiness in spite of their challenges in life? What helps them to be resilient?

3. In both the book and the opinion piece, a sibling plays an important role. What similarities do you see? What differences?

4. Melissa refers to American Girl dolls and the Cupcake Diaries books as contributing to her happy childhood. How do toys and imagination play a role in Auggie’s childhood experiences? How have they played a role in your childhood? How do you think imaginative play helps us to grow?

5. “Wonder” has inspired a “Choose Kind” movement on Tumblr and the hashtag #thewonderofwonder. Melissa cites Change.org, Kickstarter and Amazon self-publishing as being instrumental in getting her message out to the world. How has the internet helped people with disabilities change perceptions in the wider world?

6. The comments on Melissa’s article reveal that her experience and attitude strike a chord with an array of readers who want to support her positive outlook. Which of the comments are most interesting to you? Why? Where does Auggie find support for himself in the novel? What obstacles does he need to overcome to find it?

7. Compare and contrast the cover art from “Wonder” with the Dadu Shin artwork on the Times piece. What do these visual representations of each text convey wordlessly? How well do they fit the texts?

8. Based on this article, do you think Melissa would be a fan of the book “Wonder”? Use evidence from the text to support your claim.

9. How do you think Auggie would answer either or both of the “key questions” we pose above? How would you answer them?

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Going Further

— Each person’s experience with disability is different, as The Times’s Disability column makes clear. Skim some of the pieces recently published there and choose one to read in depth. How does your chosen piece differ from Melissa Shang’s essay in terms of tone, content, writing style or some other respect? What does it add to your understanding of how people experience life with disabilities? How does it challenge your assumptions? Finally, what can you observe and learn from these articles as a writer yourself?

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— In an interview with NPR, R. J. Palacio said she found it more interesting to write about acts of kindness from young people than acts of meanness. This led her to introspection about her own junior high school experience. “Could I have been nicer?” she wonders.

Was I nice? I think somewhere in between nice and not nice is where many people are. It’s funny because a lot of people have told me that they identify with the book not because they have experienced bullying, but because when they were younger they remember that there were times when they could’ve been nicer.

Consider your own life. Where do you fall “in between nice and not nice”? Write a journal entry using specific examples from your life to investigate the answer to this question.

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— Ms. Palacio followed up her first novel with “365 Days of Wonder.” This book collects and shares precepts that she imagines Mr. Browne, the fictional teacher from “Wonder,” would share with his class. Using a site such as Brainy Quote, collect 10 precepts you would consider adding to Mr. Browne’s collection, or create some of your own precepts to submit via the Choose Kind Tumblr page.

— Read this 40-year-old article from The New York Times’s archive, “Surgical Teamwork Gives Disease Victims a New Life,” featuring the stories of two young people with severe facial abnormalities. In 1977, what new advances were offering exciting possibilities to the author and readers of this article? In what ways had the situation improved for people with disabilities over previous generations? What do you notice about the word choice in the writing? How have our way of speaking and writing about disability changed since 1977? Look at this article with the eye of a 21st-century newspaper editor. Highlight wording that would need to change to publish this article in a respected newspaper today and revise those passages.

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— The New York Times features a Health Guide section that gives an overview of various illnesses or disabilities such as Auggie’s condition, Treacher-Collins syndrome, and Melissa Shang’s condition, Charcot-Marie-Tooth disease. Consider a different chronic illness or disability that someone in your life faces and research it using a Times Health Guide. Then, respectfully ask that person to share a little bit of their personal experience with you via email, video chat or perhaps even an audio recording such as in The Times’s Patient Voices feature. (Here is another link to personal experiences with Charcot-Marie-Tooth disease examples.)

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— Auggie’s experience involves starting at a new school and trying to build friendships, a challenge many students face each year. In this New York Times article from 2015, the Yale professor Nicholas A. Christakis writes about college freshmen establishing friendships:

It turns out that we are hard-wired to seek and make friends in novel, stressful circumstances. Students naturally assemble themselves into elaborate social networks — and not just Snapchat, Tumblr, Facebook or Twitter. Our modern technology is merely put into the service of more ancient and powerful impulses.

Compile a list of tips that you think would help a new student adapt to life and build friendships in your school. Additionally, this article begins with a graphic called a sociogram (explained here and exemplified here) that maps the relationships among a set of students. Create a sociogram for the characters in “Wonder” or for another young adult book you have recently read. Do the relationship structures in the novel seem realistic and authentic?

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— This Picture Prompt asks you to think about whether you are an optimist or a pessimist using an illustration of the classic “glass half full or half empty” metaphor. Which are you? To what extent do you think happiness is something that comes from within, and to what extent do you think it is determined by outside events? Why?

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— Mr. Browne is a memorable character from “Wonder” who influences the way his students think about themselves and their world. Does he remind you of any teachers in your own life? Consider this Student Opinion question, then follow it up with a note to a favorite teacher, past or present, who has successfully changed your mind-set about your own abilities.

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More Learning Network Lesson Plans on Often-Taught Literature

Here is what we have so far, and the collection is always growing:

Maya Angelou, “The Absolutely True Diary of a Part-Time Indian,”“Antigone,”“The Book Thief,”“The Catcher in the Rye,”“The Crucible,”“Death of a Salesman,”Roald Dahl, Charles Dickens, “Enrique’s Journey,”“Frankenstein,”“The Giver,”“The Glass Castle,”“The Grapes of Wrath,” “The Great Gatsby,”“Harry Potter,”“The Immortal Life of Henrietta Lacks,” “The Hunger Games,”“The Kite Runner,”“Lord of the Flies,”“Of Mice and Men,”John Milton,“The Necklace,””Orwell and “1984”, “The Outsiders,”“A Raisin in the Sun,”Shakespeare, Henry David Thoreau, Mark Twain and “Huckleberry Finn,”“The Scarlet Letter,”“Speak” and “To Kill a Mockingbird.”

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