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Special Needs Kids
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The Child with Special Needs: Much of how you raise your child with a disability will depend on your family's personal beliefs about childrearing, your
child's age, and the nature of his or her disability. An important point to remember is that most of the regular child-raising
issues will apply -- children with disabilities will go through the usual childhood stages. They may not go through stages at the
same age, at the same rate, or use the same words as children without disabilities, but they are children and kids are kids.
We, as parents, may believe that all children should be treated the same, but in practice that is usually not the case. Why?
Because anyone who has been around children, even infants, knows they have different personalities and react differently to
similar situations. We encourage and coax the shy child and set limits for the rambunctious one. We tell the loud ones to be
quiet and the quiet ones to speak up. We offer different activities to the child who loves to paint than to the one who wants
to play ball. Children just are not the same -- but they should have the same opportunities.
Among their opportunities should be the chance to assume increasingly greater degrees of responsibility and independence.
There may be many ways in which your child can help himself or herself or other members of the family, including doing
chores around the house. You will need to consider what these activities might be, given your son or daughter's disabilities
and capabilities. As you expect and encourage your child to assume responsibility, his or her sense of pride and competence
will also increase. As Ivonne Mosquera remarks:
"Even though I'm blind, even though it may take me a bit longer to do certain things, I can still do them...Once you
accomplish a goal, you'll be the person who feels good about it. Whether or not other people congratulate you for it, you'll
feel better, and you'll know that you did it because of you -- because you never gave up".
Conversely, to not expect or encourage your child to contribute to self-care or household matters may send the message that
he or she is not capable of helping. Dependence is fostered instead, as Teresa discovered with her daughter Betsy. "First,
they were little things like turning on the bathwater. Then she wanted me to carry her instead of using crutches. She refused
to even try using them. I couldn't make myself say no, yet I knew that somehow this was going too far".
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".
Perhaps some of the most encouraging words for parents come from children who have disabilities, whose experiences and
feelings are described in numerous books. One consistent idea they express is that when parents expect a child with a
disability to develop his or her capabilities -- whatever these may be -- this empowers and strengthens the child. This sense
of empowerment can be found, for example, in the dedication Tom Bradford wrote for his book about hearing loss; he
dedicated the book to his mother "who never let me know that my hearing loss could have been a limitation" (Bradford,
1991, p. iii). Eli, a twelve-year-old whose stroke resulted in several physical disabilities, writes, "My friends and family
helped me overcome my fears. They encouraged me to try everything, even if I was determined that I couldn't" (Krementz,
1992, p. 16). Fourteen- year-old Sarah says that, despite her artificial leg, "my parents sent me to a regular nursery school,
to swimming lessons and camp -- everything other kids did...I think my family's encouragement has a lot to do with the fact
that I have such a positive attitude. They never sat me in front of the TV or stopped me from doing anything I wanted to try.
They gave me a normal childhood" (Krementz, 1992, p. 83). Robert, who has cerebral palsy, remembers that his mother
said to him one day, "Robert, why don't we focus on what you can do instead of what you can't do?" This was, he believes,
"my biggest turning point -- I took off like a rocket!" (Kriegsman, Zaslow, & D'Zmura-Rechsteiner, 1992, pp. 43-44)
Addressing Financial Concerns: The expenses associated with raising children can stretch a family's resources. When a child has a disability, particularly one
that involves high-priced medical care, a family can quickly become overwhelmed financially. While it is often difficult to
resolve financial concerns completely, there are a number of things parents can do that may help. Charlotte Thompson
recommends that, as soon as parents find out that their child has a disability, two actions should be taken immediately. These
are:
- Start a program to organize and manage your new financial demands. "This not only means management of everyday
money, but it also means keeping very careful track of your medical bills and payments" (Thompson, 1986, pp. 101-102).
There are a number of money management guides available that explain how to do this.
- Seek information about any and all financial assistance programs. "If the state agency caring for handicapped children is
contacted immediately, it may be able to assume financial responsibility for your child's care right from the start" (Thompson,
1986, p. 102).
Often, so much attention is focused on the provision of health care that doctors and other medical staff may not mention
available sources of financial aid. Many states have passed legislation intended to help families of children with a disability
address their financial concerns, but parents will need to be "well focused and persistent" to get the answers they need.
Many children with disabilities are eligible to receive Supplemental Security Income (SSI) benefits, based upon their
disability. A recent Supreme Court decision (Sullivan v. Zebley) has created changes in the eligibility requirements for these
benefits. Because of these changes, many more children are now eligible than in the past. Some children who formerly were
denied benefits (i.e., after January 1, 1980) may even be eligible for back benefits. Therefore, it is a good idea for all families
with a child who is blind or who has a disability to apply for SSI. If a child is found eligible for SSI, he or she is automatically
eligible for Medicaid benefits, even if the family income is higher than what is traditionally required for Medicaid in that state.
This is very important for children with disabilities who may have many medical needs. (Clark & Manes, 1992)
If your child qualifies for Medicaid, most early intervention services can be paid for by Medicaid. If your child qualifies for
Medicaid, it is important to have him or her assessed by a provider qualified to perform the Early Periodic Screening,
Diagnostic, and Treatment (EPSDT) program. If an EPSDT program determines that your child has a condition that requires
treatment because of "medical necessity," then it can be paid for by Medicaid. Furthermore, each state has a "Child Find"
system, which is responsible for locating and assessing children with disabilities. This is required to be free by Federal law.
But sometimes, even though there is not supposed to be a waiting list, it can take a long time to get your child assessed.
Therefore, it is important to know about what other resources can be used to get help for your child.
Private insurance benefits are one such resource. Usually, nursing, physical therapy, psychological services, and nutrition
services can be reimbursed by private insurance. In some cases, occupational therapy and speech therapy are also
reimbursable. Educational expenses related to a child's disability are only rarely covered by insurance. However, it is useful
to keep track of educational expenses, because these are deductible on your Federal income tax returns.
Some additional resources to contact in your search for financial assistance include:
- Hospital social workers;
- Public health department;
- Public health nurses;
- Volunteer agencies;
- Disability organizations; and
- State government agencies (usually listed under "State Government" in the telephone book), particularly those departments
that oversee programs for children with disabilities.
Because searching for assistance may involve a lot of telephone calls, it is a good idea to have paper and pen at hand to
record the names and telephone numbers of all those you contact, as well as any referrals they give you. Whether or not you
believe your income is too high for your family to quality for financial aid:
"...the key is to keep trying -- to get more information, to follow up leads, and to continue applying for various types of
financial assistance. This may seem like an endless paperwork maze to you, but with luck some of the paper at the end will
be the green kind that can help you pay your child's medical bills. Keep at it." (Thompson, 1986, p. 103)
Future Planning: It is not possible for parents to imagine all the stops and detours that they will make as their unexpected journey takes them
into the future. But you will probably be thinking at different times about what the future holds for your child. Advocates
believe it is important for parents to have expectations about what their child with disabilities can achieve in the future and to
encourage their child to develop as much independence as possible, given the nature and severity of the disability (Dickman,
1993).
Over the past 20 years, the options for children and adults with disabilities have greatly expanded. Schools have developed
specialized educational techniques to promote learning and the acquisition of functional skills that will enable individuals with
disabilities to have choices about where they live, work, and play, and who they have as friends. The movement to include
individuals with disabilities in the mainstream of school life is growing, with significant pressure coming from parents. The
premise behind inclusion is that individuals with disabilities should not be segregated but, rather, should have the same
opportunities that individuals without disabilities have -- that is, the same opportunities to go to neighborhood schools, to be
educated alongside their nondisabled peers, to participate as fully as possible in school activities. However, for inclusion to
work, school systems must provide each student with supports appropriate to his or her needs. Support, training, and
technical assistance also must be made available to teachers and to nondisabled peers. Therefore, it is important for parents
to be aware of how inclusion decisions are made in regard to their child and to advocate for supports they feel their child, his
or her teacher, and the peer group need in order for the inclusive setting to be a successful one.
Inclusion, however, means more than just including students with disabilities in mainstream school activities. Students will
grow up, leave the school setting. What does the future hold for them as adults? This is, naturally, of great concern to
parents, disability advocates, disability organizations, and persons with disabilities themselves. For far too long, students have
exited the school years to an adult life that lacked opportunities for employment, further education, or community
participation (McLaughlin, 1993). Now, with the help of federal legislation and the advocacy of many concerned parties,
adult life for individuals with disabilities holds increasing promise. The Individuals with Disabilities Education Act (IDEA) now
requires that school personnel, parents, and each student with disabilities (16 years of age or older, and, in many cases,
younger) plan for the student's transition from school to post- school environments, including employment, additional
education or training, independent living, and community participation (Wandry & Repetto, 1993). This legislation is intended
to prepare youth with disabilities for the adult world and roles they will encounter upon leaving high school, with the purpose
of maximizing their participation in the mainstream of society. Furthermore, the Americans with Disabilities Act (ADA) has
incorporated into law provisions that guarantee many of inclusion's principles as individual rights. No longer may most child
care centers refuse to serve children because they have a disability. No longer may a qualified individual be denied
employment because he or she has a disability. Public accommodations must now be accessible to all individuals. Many
states have been working actively to establish community- based supports so that individuals with disabilities can lead their
lives as independently as possible.
- Ensure that your child has the opportunity to acquire skills now that will make him or her as independent as possible in the
future.
- Ensure that your child has opportunities to develop social skills that can be used in a variety of settings (regular classroom
settings and exposure to many different environments are useful in this regard).
- Write a will that will provide for your child's care and safeguard his or her eligibility for government benefits. (For more
information about estate planning, request a copy of Estate Planning from NICHCY.) Some states now provide for
self-sufficiency trusts which allow parents to leave money to a child with a disability without disqualifying that child (even of
adult age) from government benefits. Other states require that a special needs trust be established.
- Teach your child to be responsible for his or her own personal needs (e.g., self-care, household chores).
- Work with the school and other agencies to ensure that transition planning for your son or daughter takes place and
addresses training for future employment, coordination with adult service providers, investigating postsecondary education or
training, and participation in community activities.
- Help your child develop self-determination and self-advocacy skills.
- Explore different possibilities for living arrangements once your son or daughter is grown.
Learning that your child has a disability or illness is just the beginning of the journey. At times, you may feel overwhelmed by the challenges
associated with disability and by the strength of your own emotions. And while you may feel alone and isolated, there are many supports available. Other parents can be invaluable sources of help and information. Services are also available --
early intervention services for young children, educational services for school-aged children, services available through public agencies that can assist your entire family. Having access to information and supports may be critical in maintaining a stable
and healthy family life.
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.
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Related articles within our community:
Below are a few informative websites that will provide you with further information on special needs children:
1. American Sign Language Alphabet: Learn the American Sign Language with our helpful Alphabet chart!
2. Federation for Children with Special Needs: This site is for "families of children with special needs to keep them informed of their rights in the areas of education, health care, and many other topics of concern".
3. Internet Resources for Special Children: Disability links divided into almost 40 categories.
4. The National Information Center for Children and Youth with Disabilities: National information and referral center that provides information on disabilities and disability-related issues. Guide to Doctors; Fact Sheets; State Resource List.
5. Growth Charts for Children with Down Syndrome: Printable charts to track your child's growth.
6. ERIC Clearinghouse on Disabilities and Gifted Education (ERIC EC): This federally funded clearinghouse "gathers and disseminates the professional literature, information, and resources on the education and development of individuals of all ages who have disabilities and/or who are gifted. Gain access to the ERIC database of educational materials, which has more than 900,000 citations (70,000 citations on disabilities or gifted issues).
7. Web Content Accessibility Guidelines: For Webmasters - How to make Web content more accessible specifically to people with disabilities and more generally to all users.
8. US Government TTY/TDD Directory: Contact information for access to the Federal Government for all citizens.
9. Disable Hotline: Message forums that were created to "encourage the inclusion of persons with disabilities, disability advocates, their families, friends and professionals on issues facing us all in a user friendly environment. Also, to provide information on a wide range of disability issues.
10. Office of Special Education & Rehabilitative Services (OSERS): U.S. Department of Education's supports programs that assist in educating children with special needs, provides for the rehabilitation of youth and adults with disabilities, and supports research to improve the lives of individuals with disabilities.
11. Rehabilitation Services Administration (RSA): Office of Special Education & Rehabilitative Service outlines different programs available to disabled persons.
12. Disability Etiquette Handbook: Acceptable terms for people with disabilities.
13. Special Olympics: Their mission is to "provide year-round sports training and athletic competition in a variety of Olympic-type sports for individuals with mental retardation by giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills, and friendship with their families, other Special Olympics athletes and the community.
14. Make-A-Wish Foundation: This organization grants the wishes of children with terminal or life-threatening illnesses.
15. Positive Parenting Talk Show: Listen online to this week's talk show on Raising a Child with Down Syndrome; includes previous shows.
Below are two informative books to read that deal with the above topic. Use Amazon.com's secure server to order:
 That's My Child: Strategies for Parents of Children With Disabilities: - Lizanne Capper. This book has suggestions and information about working with your child's needs in the schools, as well as forming a team with daycare workers and health care professionals. Includes your child's educational rights. Buy it now through Amazon.com's secure server!
Click HERE or on the image of the books to give this gift to yourself or someone else!
From the Heart: On Being the Mother of a Child With Special Needs: - Jayne D. B. Marsh (Editor). From the Heart speaks to anyone who may know little about raising a child with special needs. Read experiences of nine mothers with children who have disabilities; connect through their emotions & know that you are not alone. Buy it NOW through Amazon.com's secure server!
Click HERE or on the image of the books to give this gift to yourself or someone else!
Click here to read other articles by National Information Center for Children and Youth with Disabilities.
Copyright © National Information Center for Children and Youth with Disabilities (NICHCY). Authors: Patty McGill Smith, Carole Brown, Samara Goodman, and Lisa Kupper. The above information is presented for educational purposes only, and it is not a substitute for informed medical advice or training. Please do not use this information to diagnose or treat a mental health problem without consulting a qualified health or mental health care provider. Reprinted with permission.
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