Coping.us
Helping you become all that you are capable of becoming!

 


 
Loading

Tools for Parents of Children with Special Needs

Table of Contents

Introduction to Tools for Parents of Children with Special Needs is on this same page below
 
 
 
 
 
 
 
 
 
Chapter 10: Parental Advocacy

Definitions of Special Needs

The Americans with Disabilities Act (ADA), Public Law 101-336, signed into law on July 26, 1990, mandates equal access for people with disabilities to employment, state and local government services, transportation, public accommodations and services provided by private entities, and telecommunications.


Under ADA, disability is defined in the following manner: a physical or mental impairment that substantially limits one or more of the major life activities of an individual such as walking, speaking and breathing; a record of such an impairment; or being regarded as having such an impairment. 

 

For the purposes of ADA, the definition of special need is very broad-based, and includes among others, mobility and sensory impairments, mental illness, intellectual disabilities and learning disabilities.  This definition of special needs includes diabetes, cancer, HIV/AIDS, arthritis, respiratory and cardiac conditions and chronic back pain.



Diagnostic categories of children with special needs include the following:

 

Intellectual special needs: gifted, Intellectual disability (mild, moderate, severe, profound)

 

Genetic disorders: Downs Syndrome, Fragile X Syndrome, over 200 syndromes


Autistic Spectrum Disorder: autistic spectrum disorder (mild, moderate, severe)

 

Physical special needs: Cerebral Palsy, Spina Bifida, Muscular Dystrophy, Arthritis,  Multiple Sclerosis, spinal cord injuries, brain injuries, childhood stroke victims, Cystic Fibrosis, chronic long term illnesses

 

Perceptual special needs: hearing impaired, visually impaired, expressive language/communication disorders, Specific Learning Disability (SLD)

 

Emotional special needs: emotionally handicapped, severely emotionally handicapped, school phobia or other phobias, separation anxiety or other anxiety/panic disorders, depression, conduct disorder, Oppositional Defiant Disorder (ODD), eating disorders, elimination disorders

 

Neurologically based special needs: Tourette's disorder, seizure disorder, Attention-Deficit/Hyperactivity Disorder (ADHD), closed head injuries.

 

The World Health Organization defines disability as any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner, or in the range, considered normal.  This means that, apart from its underlying origins and ultimate effects, disability is a limitation in life activities, such as working and living independently, caused by impairments or other chronic conditions, such as blindness or arthritis.  Disability involves many areas of functioning, such as physical ( e.g., walking), emotional (e.g., personal relationships), and mental (e.g., problem solving).

Definitions of Special Needs

The Americans with Disabilities Act (ADA), Public Law 101-336, signed into law on July 26, 1990, mandates equal access for people with disabilities to employment, state and local government services, transportation, public accommodations and services provided by private entities, and telecommunications.

 

Under ADA, disability is defined in the following manner: a physical or mental impairment that substantially limits one or more of the major life activities of an individual such as walking, speaking and breathing; a record of such an impairment; or being regarded as having such an impairment. 

 

For the purposes of ADA, the definition of special need is very broad-based, and includes among others, mobility and sensory impairments, mental illness, intellectual disabilities and learning disabilities.  This definition of special needs includes diabetes, cancer, HIV/AIDS, arthritis, respiratory and cardiac conditions and chronic back pain.


Diagnostic categories of children with special needs include the following:

Intellectual special needs: gifted, Intellectual disability (mild, moderate, severe, profound)

Genetic disorders: Downs Syndrome, Fragile X Syndrome, over 200 syndromes

 

Autistic Spectrum Disorder: autistic spectrum disorder (mild, moderate, severe)

 

Physical special needs: Cerebral Palsy, Spina Bifida, Muscular Dystrophy, Arthritis,  Multiple Sclerosis, spinal cord injuries, brain injuries, childhood stroke victims, Cystic Fibrosis, chronic long term illnesses

 

Perceptual special needs: hearing impaired, visually impaired, expressive language/communication disorders, Specific Learning Disability (SLD)

 

Emotional special needs: emotionally handicapped, severely emotionally handicapped, school phobia or other phobias, separation anxiety or other anxiety/panic disorders, depression, conduct disorder, Oppositional Defiant Disorder (ODD), eating disorders, elimination disorders

 

Neurologically based special needs: Tourette's disorder, seizure disorder, Attention-Deficit/Hyperactivity Disorder (ADHD), closed head injuries.

 

The World Health Organization defines disability as any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner, or in the range, considered normal.  This means that, apart from its underlying origins and ultimate effects, disability is a limitation in life activities, such as working and living independently, caused by impairments or other chronic conditions, such as blindness or arthritis.  Disability involves many areas of functioning, such as physical ( e.g., walking), emotional (e.g., personal relationships), and mental (e.g., problem solving).

Tools for Parents of Children with Special Needs
Introduction 
 
In the next ten chapters you will be exploring your feelings concerning your child with special needs. You will review how well you are coping with the diagnosis and grieving the losses involved. You will analyze how the child's problems has affected your bonding. You will review the lifelong needs of your child and how to manage your behaviors in response to your child's behaviors. You will explore the sexuality needs of your child. You will assess the spiritual dimension of your child's needs. You will review what is discrimination. You will practice communication with your child and about your child's condition. Finally, you will review your role as advocate for your child. This book is intended to be used by parents as a motivational reader and in parent support groups as an outline for discussion and stimuli for emotional response. This book is not a "how to'' but rather is a "what if'' book. The purpose is to provoke, challenge, irritate and motivate.

 

Use of Journal Writing with this Book:

At the end of each chapter you will be provided with stimulus questions for you to respond to in a Journal. The Journal will be your documentation of your journey in dealing with your feelings concerning your child with special needs. Using a Journal will provide you with a systematic way to record your feelings and observations as you cope with the issues arising from having a child with special needs.

 

Use the Journal in the following ways: Respond to the questions at the end of each chapter and then in a year return to your Journal and see how you would respond to those questions then. Do this annual review to monitor how your response changes over the years. 

 

Keep the Journal current and write down those responses which differ from your original responses to record how your feeling have change in relating to issues surrounding your child with special needs.Use the Journal to record your response to stimuli or situations which occur during the day, week or month which relate to your child with special needs. 

Record in your Journal response to the following questions:

1. What was the stimulus or situation which affected you?

2. What was your response to the stimulus or situation?

3. How did you feel about your response to the stimulus or situation?

4. How would you have improved how you responded?

5. What would you do the same in the future to a similar stimulus?

6. What did you learn from this stimulus or situation which you can apply in the future in dealing with other issues related to your child with special needs?

 

Record in your Journal your goals for your child with special needs so as to monitor how those goals change or modify over the years.

Use the Journal as a tool in a support group with other parents of children with special needs so that your group can stay focused on feelings and developing coping strategies which are rational and healthy for your children, families and yourselves.

Prologue 

The couple waiting outside the testing room was pacing the floor. Their emotions ran the gambit from excitement to sheer terror. Their son was being evaluated and they feared the worst. To make the waiting time go quicker, they reminisced about their son's life. A smile appeared on both their faces as they remembered the excitement of their pregnancy and the dream of a "normal" happy baby boy. Their moods changed rapidly as they recalled the traumatic delivery and the horror they endured the first month of their son's life in the intensive care nursery. They reflected on the hours of waiting in the variety of doctor offices only to receive blank stares and false hopes. The simple milestones of development were delayed and they recalled fearing that their "dream of having a normal child" was becoming less and less a reality.  They chatted on about the long arduous school experience from infant stimulation, developmental preschool, and exceptional education classes to the joyous high school graduation. Their parenting, perseverance and their son's strong will is what brought them to this point in time. The testing room door opened and the evaluator donning a happy grin came into the lobby. Their son had done well and was to be accepted into the employment program. This would mean a new milestone in their lives. He would be moving out of their home in the fall to live in the program's group home. At twenty-two their child was coming into a world of his own. Although they knew it would be hard to let go, they were excited, this was a world they had advocated for all of his life.