For Parents That Are Told Their Child Has Or May Have a Disability

When parents learn that their child has a disability or a chronic illness, they begin a journey that takes them into a life that is often filled with strong emotion, difficult choices, interactions with many different professionals and specialists, and an ongoing need for information and services. Initially, parents may feel isolated and alone, and not know where to begin their search for information, assistance, understanding, and support.

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. Remember, you are the most important person on your child's treatment team.

The second and probably the most important thing to do (If not already done) is request a thorough evaluation from the Committee on Special Education or building administrator. This must be a comprehensive assessment of your child’s skills and abilities. The results are used to determine what your child’s individual needs are, if your child has a disability and what medication(s) if any, should be used. This will also determine if your child needs special education services and may lead to the development of an Individualized Education Program (IEP).

A 3-Step Process

Evaluation -- > Diagnosis -- > Treatment

Do you suspect that you, your child, or someone you know may have a disability? Do you or your child have behaviors that significantly impair your ability to function? Has a professional in your or your child's life -- such as a doctor or teacher -- suggested that an evaluation is needed?

When seeking an evaluation or treatment for a disability, it is important to see a qualified, licensed healthcare professional. In addition to ensuring that a particular professional has the required training, it is also important to work with a professional who has experience in dealing with the specific disorders.

Step One: Comprehensive Evaluation must include:

• parent and child interviews
• parent- and teacher-completed child behavior rating scales
• parent self-report measures
• a social history
• individual clinic-based psychological tests
• review of prior school and medical records
• an observation of the student in their current educational setting
• individually administered intelligence testing, educational achievement testing, or screening for learning disabilities (only necessary if not completed within the past year) and assessments relating to the areas of the suspected disability
• a standard pediatric examination or neurodevelopmental screening to rule out any unusual medical conditions
• additional assessment procedures may be recommended, including vision and hearing screening, as well as formal speech and language assessment.
  

Step Two: Accurate Diagnosis by a trained and experienced professional. There are several types of professionals who typically conduct the diagnosis. These include: physicians (especially psychiatrists, pediatricians, and neurologists), psychologists, social workers, nurse practitioners, and other licensed counselors or therapists (e.g. professional counselors, marriage and family therapists, etc.). In addition to those who may make the diagnosis there are numerous other professionals who may have a role in providing treatment and other services for individuals with disabilities. These may include various types of therapists or specialists (such as occupational therapists, speech and language therapists, behavior therapists, educational specialists, etc.)

Step Three: Appropriate Treatment Plan. While all of the above professionals can provide treatment only certain medical professionals can prescribe medication and perform thorough physical evaluations to rule out other possible causes of symptoms. These professionals are physicians (M.D. or D.O.), nurse practitioners, and physician assistants (P.A.) under the supervision of a physician. All professionals -- including medical/health professionals and educational professionals -- should work only within their scope of experience and expertise.

Because multimodal treatment is the cornerstone of treatment, it is important that all of the members of your treatment team communicate with each other on a regular basis.

The third thing to do is to find qualified health and mental health care providers to work with. This may include: child’s healthcare provider(s), psychiatrist, psychologist, neuropsychologist, social worker, speech therapist, audiologist, physical therapist, occupational therapist and specialist w/knowledge in area of suspected disability and child’s case manager.

Remember that this is Your Child

This person is your child, first and foremost. No one knows them better than you. Granted, your child’s development may be different from that of other children, but this does not make your child less valuable, less human, less important, or in less need of your love and parenting. Love and enjoy your child. The child comes first; the disability comes second. If you can relax and take positive steps you will do the best you can, your child will benefit, and you can look forward to the future with hope.

The following are some important things to know and remember:

• Understand that You Are Not Alone
• Become fully informed about school programs and the Rights of Children and Parents
• Seek information about the disability(s): Read materials written by (and for) Parents
• Learn the terminology
• Find and access related programs and services for your child within your community
• Join a local support group (or National, if local not available) ~ Best source for local information and resources
• Seek the assistance of another parent who has a child w/a disability
• Keep a notebook in which you write down information concerning your special needs child. Also very important for record keeping
• Examine your child’s school records
• When appropriate, teach your child about their disability(s), their rights and about the evaluation, education and treatment process. Talk to them about how they are feeling and what they think about everything…you’d be surprised how candid and insightful our children can be
• Involve your other children (again when appropriate) in helping your special needs child. This one I learned from a friend with 4 kids. It helps them feel included, important, helpful and they will learn things that will help them in life.
• Medicate only when needed…ask your child about how they are feeling before & after meds start
• Do Not Be Intimidated
• Do Not Be Afraid to Show Emotion
• Don’t Be Afraid to Ask Questions, because asking questions will be your first step in beginning to understand more about your child and their needs
• Talk with your mate, family, and friends
• Go to those who have been a strength before in your life. Find the new sources that you need now

Supporting and Empowering the 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, 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?