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.
“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.”
– From The Siege, the First Eight Years of an Autistic Child with an Epilogue Fifteen Years Later, by Clara Clairborne Park (1982)
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.
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.
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.
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.
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.
There are many ways to identify a parent group in your area. A good starting place is the NICHCY State Organizations Search, which can help you identify groups in your state. The state parent training and information (PTI) center (listed in NICHCY’s State Organizations Search) is also a good resource. Look under the category “Organizations Especially for Parents.”
Read books written by (and for) parents
You may also find it helpful to read many of the excellent resources — books, articles, websites — that are available on disability issues. 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.
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, start with Myria’s Parent guide: Getting 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.
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.