What Can We Do for Special Needs Families

When Yous Acquire That Your Child Has a Inability

by Carole Brown, Samara Goodman, and Lisa Küpper
Links updated, March 2020

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 Non Lonely," Patricia McGill Smith offers the insights that she and others have gained through their own experience of having a child with a inability. In this commodity, nosotros 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 corking deal of humility that we are fifty-fifty attempting to draw what the future may agree for you and your family unit. On the one hand, we want y'all to be equally prepared as possible and then y'all tin 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 inability. Researchers frequently base their findings on group data—what happens to the majority of people in a circumstance. Even so, what might be "true" in a research sense may non be at all true for your family unit. Therefore, while we promise this article will guide you lot to sources that are helpful, take from our discussion simply what you need.

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The Journeying

Growth is endless and our lives change and change us beyond anticipation. I do not forget the pain—information technology aches in a particular way when I look at Jessy's friends (her paid companions), some of them simply her historic period, and let myself for a moment to think of all she cannot be. But we cannot sift experience and take only the part that does non hurt us. (1)

No parent wants his or her child to be ill, disabled, or harmed in whatsoever 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 nevertheless, the majority of families are able to observe the force inside themselves and among their circles of support to arrange to and handle the stress and challenges that may accompany their child's disease or disability.

Many parents accept described the progression—and pendulum—of feelings they experienced upon learning that their child has an affliction or a disability. Patty McGill Smith touched upon many of these emotions in her article—stupor, deprival, grief, guilt, anger, confusion. The type of emotions parents experience, as intense and overwhelming as they may be, are also normal and adequate. Stability does render, 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 later the birth of a child with spina bifida and other disabilities, says:

I take learned, and grown, more than since Dylan'due south nascency than any other fourth dimension in my life. You learn patience, and y'all become to witness miracles that you otherwise would have been too busy to have noticed…You lot acquire acceptance, you realize you take been wrong to judge, and you lot learn that there is a affair called unconditional beloved. (2)

Taken together, the many suggestions and insights offered past parents who have lived for years with the feel of disability in the family can provide parents who are new to the experience with much guidance and back up. The residuum of this commodity 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.

Admission Information and Services

1 of the first things you tin can practice that may prove enormously helpful, at present and in the futurity, is to collect data—information about your kid's disability, about the services that are bachelor, and about the specific things you lot can do to help your kid develop to the fullest extent possible. Collecting and using the information available on disability issues is a critical office of being a parent of a child with special needs. Fortunately, there is a great deal of data available on many disabilities and many inability issues.

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'southward 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 virtually and supporting special education in their community. Within each of these groups, information, emotional and practical back up, and common concerns can exist shared. The power of this common 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 cognitive palsy. I hated the echo surgeries, but one mother wished her kid had a condition that doctors could fix. I struggled with how to answer to strangers, but another female parent wanted her kid'southward condition to be visibly obvious and then strangers would understand why she wasn't doing what other six-month-old babies did..It was powerful to simply besiege with other mothers whose babies had special needs, hear the variation in stories, see the experience refracted through the crystal of multiple identities. (iii)

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" past 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." Conspicuously these men have much to say, and much to offer one another. (iv)

There are many means to identify a parent group in your area. A skillful starting place is your state's Parent Training and Information Middle, the PTI. Not only can the PTI assistance you sympathize your child'southward rights, the services bachelor in the customs, and how to advocate for your child, this valuable resource tin can also put you in touch with parent groups locally and in the land.

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Read Books Written By (and for) Parents

Yous may also find it helpful to read many of the excellent resources—books, manufactures, Web sites—that are bachelor on disability bug. Some are quoted in this publication. Others are listed on inability fact sheets. Worthwhile suggestions about what to read tin can come equally well from talking to a local librarian, your child's teacher, or other involved professional; contacting a national, land, or local disability grouping; or talking to other parents of children with disabilities.

Find Out Nearly Services

The search for bachelor services is a challenge for families and one that continues equally the child'due south 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 most Special Education Services.

Typically, there are many services bachelor within communities, districts, and states to assist you in coming together the needs of your child with disabilities and your family. Families with a young child with disabilities (nascency through the third birthday) should access early intervention services , which are designed to identify and treat developmental problems as early on as possible. For schoolhouse-aged children with disabilities, special education and related services can be important factors in addressing a child'due south educational needs.

Early intervention services . Early intervention services are designed to address the needs of infants and toddlers with disabilities every bit early on every bit possible. These services can range from feeding support from a nutritionist in a hospital to developing a consummate physical therapy program for an baby with cerebral palsy. All the same, 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 resource are a major consideration when planning services for infants and toddlers with disabilities. The program that is developed through this procedure is called an Individualized Family Service Plan (IFSP).

Parents, also, can benefit from early intervention services. Equally total 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 kid learn and develop, likewise equally 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 bureau and are provided in different settings, such as your home, a clinic, a neighborhood daycare center or Caput Kickoff program, a infirmary, or the local health section. Initial evaluation and assessment of your child will be provided complimentary of charge. Services may as well be provided at no cost, although this may vary from country to country. Some states charge a "sliding-scale" fee for services.

Special teaching and related services . Through the mandates of two federal laws—the Individuals with Disabilities Pedagogy 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 pedagogy 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 educational activity your child will receive. Together, the members of your kid's team develop an Individualized Education Program (IEP), which states in writing the educational program that is planned for your son or daughter.

In that location 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 Middle for Parent Information and Resources to explain the special pedagogy process. We've listed a few webpages you might like to read to learn more.

_______________________

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

Services for Preschoolers
https://world wide web.parentcenterhub.org /preschoolers/

The 10 Basic Steps of Special Pedagogy
https://www.parentcenterhub.org/steps/

Evaluating Children for Disability
https://www.parentcenterhub.org/evaluation/

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Supporting and Empowering Family

You lot're the center of the family unit

Many factors can influence the well-being of a family. One gene is certainly the emotional and concrete health of the parents. You, equally parents, are definitely the heart of the family. You are the ones who deal with the issues associated with your child's inability—doctors, child intendance providers, family members, your child'due south school, the professionals who work with your kid. Yous likewise maintain the household — working to pay the bills, shopping, cooking, cleaning upwards, taking intendance of other children. Is it any wonder that many parents of children with disabilities report times of feeling overwhelmed?

Therefore, it is very of import for you, as parents, to take some fourth dimension to care for yourselves as individuals: getting enough sleep, eating regular meals, taking a short walk, and doing the things that you really relish, even if you can only squeeze them in occasionally. Equally 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 record. The respite commonly didn't final more than a half hr, and information technology was never enough, merely it helped me intermission the "martyr" pattern of thinking I was required to live and breathe only for my children.

In those cursory moments of quiet reflection I could renew my sense of self and remember that I was important, as well; that I was Kate, a person, with lots of abilities and interests that did not all coincide with my office as Mommy. I came to realize that a little selfishness is not a bad thing. If I could bask myself more than, I could relish my children more. (5)

Many families will be single-parent families, only for those who are not, the human relationship betwixt the parents is a cistron that tin can influence the family'southward well-being. When the parents' relationship is a strong and supportive ane, it enriches family life for all members. Conversely, when in that location are problems in the relationship, the tension affects the rest of the family besides. This is stating what nearly of us already know—that marriages undergo change with the nascency of a kid, whatsoever child. But when a child in the family unit has special needs, this modify may be even more profound. As Kelly Harland puts information technology, "[H]ow unexpectedly it all unfolds. One moment, you and your lover are singing forth in bad Italian with Venetians in a crowded bar…reddish wine pouring out of nowhere. And the next minute, the two of you lot 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. Ane point emerges again and once more, and that is the importance of making fourth dimension for each other: meeting for lunch, getting away for a few hours together, sharing an action. Talking to each other and really listening are also important—and conversations do not always have to circumduct around the children in the family unit. Finding other topics to discuss can do much to revitalize parents and preserve intimacy between them. It is also of import to recognize that there are times when one partner needs to have space. As one parent puts it, "Realize that yous do not deal with this stress in the aforementioned style your spouse does. Let your spouse bargain with information technology in their own way, and try to come up to an understanding of your differences." (7) Another parent shares, "At these alone moments, the greatest gift was just to allow the other be." (8)

Sharing the duties of providing care is too necessary, although couples report that they often have to work difficult at communicating in social club to reach the "nosotros-ness" that goes behind teamwork.

Many parents have found it is necessary and helpful to seek joint counseling. Through this process, they grew to empathise each other's needs and concerns more fully and institute ways of discussing and resolving their differences. As one parent says, "We steer a rocky transport, my married man and I…We have had to cheque in with the therapist, sometimes once a year, sometimes once a week. We've experienced a difficult distance between one another from time to time, as Will in all his complication takes over every spare second of our lives. We have hung on, though. Our hearts are bonded by something that goes fifty-fifty deeper than dear." (ix)

Brothers and Sisters

We know from the experiences of families and the findings of inquiry that having a kid 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 virtually how the presence of a disability affects each sibling individually, as well every bit the relationships between siblings.

The touch, 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 every bit they are. Some go securely involved in helping parents care for the child with a inability. It is not uncommon for siblings to become agog protectors and supporters of their brother or sister with special needs or to feel feelings of cracking joy in watching him or her achieve even the smallest gain in learning or evolution. Megan, age 17, says of her life with her brother who has Downward syndrome:

Every day Andy teaches me to never give upwards. He knows he is different, but he doesn't focus on that. He doesn't surrender, and every fourth dimension I come across 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 non grown upward with him, I would have less understanding, patience, and compassion for people. He shows united states of america that anyone can practice anything. (xi)

In dissimilarity, many siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may experience jealous, neglected, or rejected every bit they watch nearly of their parents' energy, attention, money, and psychological back up menstruum to the child with special needs. (12) As Angela, age 8, puts it, "[T]here are times when I sit downwardly and retrieve, '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 past saying that she's glad to have a sis with special needs. "It has opened my eyes to a earth of people I never would have known about." (14) But she also says, "Sometimes I wish I had special needs. I remember that a lot when Martha gets ooohed and aahed over and nobody even thinks well-nigh me." (15) And then in the next breath, Helen says, "Another thing is that it really makes me mad when kids slap their breast with their hands and become, 'I'm a retard!' It fabricated me so mad!" (16)

The reaction and adjustment of siblings to a brother or sis with a disability may also vary depending upon their ages and developmental levels. The younger the nondisabled sibling is, the more than hard it may be for him or her to empathise the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused information technology. They may feel that they themselves are to blame or may worry about "communicable" the disability. Every bit siblings mature, their understanding of the disability matures as well, just new concerns may emerge. They may worry about the future of their brother or sister, most how their peers volition react to their sibling, or most whether or not they themselves tin can laissez passer the disability along to their own children. (17)

Clearly, it is important for you to accept time to talk openly nearly your kid's inability with your other children, explaining it every bit best you tin in terms that are appropriate to each child's developmental level. As Robert Naseef remarks, "Just as parents demand information, then do siblings, on their level." (eighteen)

If you're concerned about sibling issues, have a look at our Siblings folio, where you can connect with helpful resource, including back up groups bachelor to your children. These tin provide an "splendid outlet" for siblings to share their feelings with others in a similar situation. (19)

Your Kid with Special Needs

Much of how you enhance your child with a disability will depend on your family unit'due south personal behavior nigh childrearing, your kid's age, and the nature of his or her inability. An important betoken to remember is that nearly of the regular child-raising issues will apply—children with disabilities will get through the usual childhood stages. They may not go through stages at the same age, at the same rate, or use the aforementioned words as children without disabilities, merely they are children and kids are kids.

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

Among their opportunities should exist the chance to assume increasingly greater degrees of responsibility and independence. There may be many means in which your child can assistance himself or herself or other members of the family unit, including doing chores around the house. You will need to consider what these activities might be, given your son or daughter'due south disabilities and capabilities. As you expect and encourage your child to presume responsibleness, his or her sense of pride and competence will likewise increment.

Conversely, to non expect or encourage your child to contribute to self-care or household matters may transport the message that he or she is not capable of helping. Dependence is fostered instead. Every bit 1 mother insists, "Let him do things for himself. Don't baby him. My father-in-police noticed how Chrissy tin can manipulate people very well…[His] comment was, 'Boy, he wouldn't walk anywhere if he could discover someone to carry him all over.' Yup. That's why we don't carry him!" (20)

Of grade, the nature and severity of your kid's inability may bear on how much he or she is able to participate in household duties and so on. Peggy Finston remarks:

The outcome, then, for each of us is what is a "realistic" corporeality of normality to expect from our child? If we expect too much, we run the risk of rejecting him equally he is. If we wait besides niggling, nosotros will fail to encourage him to practice the about he can with himself. In that location is no one respond for all of us, or even for all of united states of america dealing with the same condition. The best we tin do is to realize that this is an ongoing question that nosotros need to consider. (21)

Another issue that may business organisation yous is what (or whether) to tell your child virtually his or her disability. As with siblings, the kid with special needs may as well 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 y'all get so scared when something comes out of the blue, why it upsets you then much?"

He sniffles. "Yes."

I hesitate. I'm feeling terribly warm. I never wanted to introduce my child to the label someone else created for him. And withal an instinct tells me information technology may aid him….(22)

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

And now he's still. He has calmed down. He'due south listening.

…And silence, as I attempt to imagine where to get next. Maybe I'thousand all wrong. Perchance I should never take used that word. Just an odd blitz comes over me. It feels like, with this tentative back-and-forth, we've suddenly crashed through some floodgate….Has Volition known for awhile that he has a problem; has he been waiting for his mom to explain information technology to him? There is in all this talk something for both of united states of america to hold onto, mayhap in this one moment a way to quell the terror, or even rising higher up it. (23)

As your child grows and matures and peculiarly as he or she edges into immature adulthood, it may be very helpful for him or her to be able to hash out 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 ain IEP meeting, which can teach your child useful skills like self-advocacy, expressing personal interests and goals, and being involved in making decisions that touch on his or her life. In fact, by law, whenever your kid'southward transition to life later on 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 pupil interest in IEP meetings, visit the Transition Suite , which begins at:
https://www.parentcenterhub.org/transitionadult/

Grandparents (and the Residual of the Family unit)

Grandparents are often greatly affected past the nativity of a child with a disability. "They face the double grief of their grandchild'due south disability and their own child's pain."(24) It is important to remember that they volition need support and information, too. (This is true for other members of the family unit also.)

Therefore, your parents and other members of the extended family unit need to be given opportunities to get to know your child equally a person and not just a person with disabilities. Help them to empathise your child's strengths and needs, help them to accept him or her every bit part of the family. Allowing family members to go 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.

Intendance Givers

All parents, at some time, volition probably seek child intendance. For families with a kid who needs more supervision or specialized assist, kid care may be difficult to find—or experience comfy with. Yet, even if you do not work outside the home and do not need regular child care, you may benefit greatly from having kid intendance on a periodic or even an ongoing basis. This will give you lot time to have intendance of personal matters, bask some leisure activity, or be relieved of the constant need to care for a child with a disability or chronic affliction.

You may too benefit from respite care, a arrangement of temporary kid care provided past people familiar with the needs of children with disabilities. "Temporary" can range from an hr to several months, depending on the respite intendance provider and the needs and desires of the family. Many respite care providers have undergone specialized grooming and can knowledgeably care for children whose needs may range from shut supervision to medical care. Respite care tin can be provided to infants, teenagers, or adults with special needs. In some cases, the respite provider may exist able to provide care only for the child with the disability; in other cases, care may be bachelor for siblings as well. Respite care generally differs from daycare in that it is not bachelor on a daily ground to allow a parent to return to the piece of work forcefulness.

To notice 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 assistance parents locate respite intendance 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 intendance of someone else, those who have tried it give aplenty testimony to its value in restoring their energy, sense of sense of humor, and perspective.

Working with Professionals

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

We need respect, nosotros need to have our contribution valued. We need to participate, not merely be involved. Information technology is, after all, the parent who knew the child start and who knows the child all-time. Our human 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 kid and family. The best relationships are characterized by common respect, trust, and openness, where both you and the professional substitution information and ideas virtually the best care, medical intervention, or educational program for your child. Both you lot and the professional need to speak clearly about issues and listen carefully. Indeed, both of you have important expertise to share.

You, for example, take intimate knowledge of your kid with special needs. You lot live with and observe your son or daughter on a daily footing and can contribute invaluable data almost his or her routine, development, history, strengths, needs, and and so on.

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

Thus, in that location should be a mutuality in the parent/professional human relationship. This can have time to develop and may require effort from both parties. To that stop, many parent writers suggest:

If you are looking for a specialist with whom you tin can work well, inquire other parents of children with disabilities. Often, they tin can recommend a proficient oral communication or concrete therapist, doctor, dentist, or surgeon.

If you don't empathise the terminology a professional uses, ask questions. Say, "What do you mean by that? We don't sympathise."

If necessary, write down the professional'due south answers. This is especially useful in medical situations when a medication or therapy is to be administered.

Learn as much every bit you can about your kid'southward disability. This will assist you with your child, and it can help yous participate well-nigh fully in the team procedure.

Gear up for visits to the doctor, therapist, or schoolhouse by writing down a list of the questions or concerns y'all would like to talk over with the professional.

Go on a notebook in which yous write down data apropos your special needs kid. This tin can include your child'southward medical history, test results, observations about beliefs or symptoms that volition help the professional do his or her chore, and so on. (A loose-leaf notebook is easy to maintain and add data to.)

If you don't agree with a professional'due south recommendations, say so. Be equally specific as you tin most why you don't agree.

Do whatever informed "shopping effectually" is necessary to find a doctor who understands your child's needs, is willing to work collaboratively with other medical professionals, and with whom y'all feel comfortable.

Measure out a professional person'southward recommendations for home treatment programs or other interventions against your own schedule, finances, and other commitments. You may not exist able to follow all communication 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, i 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 volition not take it upon themselves to give us permission to quit. This is upward to us. It'southward in our power to brand the conclusion." (27)

In conclusion, it is of import that the parent/professional human relationship empower the parent to be a total participant in information-gathering, data-sharing, and in decision-making. Still, it is ultimately upwards to you to decide what role(south) y'all want to take in this process and what part(s) y'all need help with. It is helpful to know that families do, indeed, choose dissimilar roles in relationship to professionals. Some parents want to allow professionals to make near decisions virtually 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 modify your mind about the role or level of interest you may want or be able to presume regarding your child'due south services. Yous may observe that you choose different roles at different times for different purposes. Be equally straight equally possible about what you desire or don't want to accept on in this regard.

Summary

In this article, we have looked at many of the issues facing yous as parents of a child with a disability. Learning that your child has a disability or affliction is just the beginning of the journey. At times, y'all may feel overwhelmed past 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 bachelor through public agencies that can assist your entire family—early intervention services for infants and toddlers and educational services for preschoolers and school-anile children. Having access to data and supports may be disquisitional in maintaining a stable and healthy family life.

We urge you to read, to talk to other parents who take a child with a disability, to talk with each other and with other family unit members, and to reach out for aid when you demand it. We conclude with the words of Clare Claiborne Park, as she reflects upon the experience and emotions of beingness a parent of a child with disabilities.

This feel we did not choose, which we would have given anything to avoid, has fabricated u.s.a. unlike, has made us better. Through it nosotros accept learned the lesson of Sophocles and Shakespeare—that ane grows past suffering. And that too is Jessy'south gift. I write now what fifteen years past I would still not have idea possible to write; that if today I was given the selection, 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 information technology has come up, for all of us, an unimagined life. And I will non alter the terminal word of the story. It is notwithstanding love. (29)

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References

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

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

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

iv | Meyer, D.J. (Ed.). (1995). Uncommon fathers: Reflections on raising a child with a disability (p. 5). Bethesda, Medico: 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 volition of his own: Reflections on parenting a kid with autism (p. 33). Bethesda, Medico: Woodbine House.

vii | Hickman, Fifty. (2000). Living in my skin: The insider'southward view of life with a special needs child (p. 246). San Antonio, TX: Communication Skill Builders.

viii | McDermott, J. (2000). Babyface: A story of middle and basic (p. 155). Bethesda, Dr.: Woodbine House.

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

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.50. (2001). Special kids demand special parents: A resource for parents of children with special needs. New York: Berkley Books.

13 | Meyer, D. (1997). Views from our shoes: Growing upwards with a blood brother or sister with special needs (p. 21). Bethesda, Dr.: Woodbine Business firm.

14 | Ibid, p. 41.

xv | Ibid.

16 | Ibid, pp. 41-42.

17 | Lavin, J.L. (2001). Special kids need special parents: A resources 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 kid with a disability (p. 144). Seacaucus, NJ: Birch Lane Press. (A revised edition of this book was published in 2001 past Paul H. Brookes.)

19 | See references ten and 12 higher up.

20 | Hickman, L. (2000). Living in my pare: The insider'south 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 kid with a inability (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 Astringent Disabilities: Topic papers, reader's guide, and videotape (pp. 43–54). McLean, VA: Interstate Research Assembly. (Quotation from folio 49.)

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

27 | Finston, P. (1990). Parenting plus: Raising children with special wellness 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 Academy, Ames, Iowa. (This certificate is not available.)

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

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