A PERFECT FIT

1. A PERFECT FIT A Volunteer Training on 4-H Involvement for Youth with Disabilities By: Nicole A. Bertke Palm Beach County 4-H Extension Agent

2. QUESTIONS TO BE ANSWERED What are some things to keep in mind when working with disabled youth? What is a developmental disability? How does involving children with disabilities fit with the mission of 4-H? What support can the 4-H office provide to help volunteers involve more children with disabilities in club work? What are some of the disabilities 4-H members might have?

3. What is a developmental disability? A developmental disability is defined as a physical or mental impairment that limits one, or more, major life activity and appears before age 18. Sources of Information A Perfect Fit: 4-H Involvement for Youth with Disabilities, 4-H 788, CES of Purdue University What's Your Handicap? 4-H Leader's Curriculum Guide, CES of North Carolina State University Together: A Leader/Agent Workbook for 4-H Programming to Include Youth with Disabilities, 4H0-0241, National 4-H Council Recreation and Handicapped Youth: 4-H Recreation Leader's Guide, 4H0-0240L, CES of the Pennsylvania State University

4. How does involving children with disabilities fit with the mission of 4-H? • Deficits in important life skills often show up in the areas of problem solving, decision making, interactions with others, and goal setting and attainment in children with disabilities. Fortunately, it is these very life skills that 4-H attempts to improve in a all of its youth participants. Through involvement in the 4-H program youth with disabilities will improve their basic life skills, thereby increasing their chances of a higher quality of life and of becoming independent, productive members of society as adults.

5. Downs Syndrome Autism Tourette Syndrome Epilepsy Spina Bifada Muscular Dystrophy Cerebral Palsy Cystic Fibrosis Mental Retardation Visual, Hearing, or Physical Impairments What are some of the disabilities 4-H members might have?

6. Downs Syndrome This is the most common and readily identifiable condition associated with mental retardation. It is caused by a chromosomal abnormality. Characteristics of a child with Downs may include poor muscle tone, slanting eyes, short and broad hands, short neck, small head, heart conditions, gastrointestinal difficulties, and a large tongue. The level of retardation may range from mild to severe, with most functioning in the mild to moderate range.

7. Autism This is a syndrome believed to be caused by an underlying physical dysfunction within the brain or central nervous system. It is four times more common in boys than girls. Symptoms include lack of a social smile, abnormalities in eye contact, difficulty in communication, difficulty forming relationships, repetitive movements, and mental retardation or giftedness.

8. Tourette Syndrome Tourette Syndrome is a neurological disorder characterized by tics - “involuntary”, rapid, sudden movements or vocalizations that occur repeatedly in the same way. There are periodic changes in the number, frequency, severity, type, and location of the tics. Symptoms can disappear for weeks or months at a time.

9. Epilepsy Epilepsy is a physical condition that occurs when there is a sudden, brief change in how the brain works altering a person’s movements or actions for a short time. These physical changes are called epileptic seizures and vary in intensity, length, and impact on the brain. Mental retardation may or may not be present.

10. Spina Bifada Spina Bifada means cleft spine, which is an incomplete closure in the spinal column. It can vary in severity. In the most severe form there can be muscle weakness or paralysis below the area of incomplete closure, loss of sensation, loss of bowel or bladder control, and build up of fluid on the brain. Cognitive function varies

11. Muscular Dystrophy Muscular Dystrophy refers to a group of genetic diseases marked by progressive weakness and degeneration of the skeletal, or voluntary, muscles, which control movement. Muscles of major organs may also be involved. The individual may experience respiratory difficulties.

12. Cerebral Palsy Cerebral palsy is a condition caused by damage the brain, usually occurring before, during, or shortly following birth. It is characterized by an inability to fully control motor function. It may include spasms, involuntary movement, tonal problems, unsteady gait, seizures, impairment of sight, hearing, or speech, and mental retardation.

13. Cystic Fibrosis Cystic Fibrosis is a genetic disorder that causes the body to produce an abnormally thick, slimy mucous in organs such as the lungs and pancreas. The symptoms include persistent coughing, wheezing, or pneumonia, excessive appetite but poor weight gain, and salty tasting skin. It varies in severity and often results in shortened life-span.

14. Mental Retardation People with mental retardation are those that develop at a below average rate and experience difficulty in learning and social adjustment. The extent of impairment can range from mild, moderate, severe, or profound. Children with MR do become adults; they are not “eternal children.”

15. Visual, Hearing, or Physical Impairments There is a wide range of visual, hearing, and physical impairments that may stand alone as a disability or may be present with any of those discussed previously, as well as with many not mentioned.

16. What are some things to keep in mind when working with disabled youth? Begin by creating an environment in which all members feel accepted and secure Help the disabled child to help him or herself. This will lead to increased independence Include the members with disabilities by accepting them as individuals who have the same needs, desires, and problems as other youth Include the members with disabilities by accepting them as individuals who have the same needs, desires, and problems as other youth

17. Tips continued... Help the individual to set goals and standards that allow for self-satisfaction and achievement Do not let the disabled youth be the center of attention or provide them with special privileges Center activities around normal behaviors of the age group

18. Tips continued... Learn about the child’s disability with an intent to know their abilities and limitations Ask the participants what they would like to do. Disabled children can help you concentrate on their abilities, not their disabilities Talk to the parents of the child. They often can provide you with extra hints concerning their child’s abilities

19. Tips continued… Encourage full participation in all activities Be firm and use behavioral modification techniques when needed, but also be quick to praise It may be necessary to alternate between quiet and action activities to avoid over stimulation Break tasks down and demonstrate requests as necessary

20. Tips continued... Focus on activities that foster cooperation rather than competition Ask what help is needed rather than assuming the person needs assistance Assess the physical environment and make adaptations as needed Encourage physical activities but allow multiple ways to be involved

21. Tips continued... Be aware of any medications being used and their side effects Remember each person has a chronological age, an emotional age, a social age, and a given level of physical activity. They may be functioning at different levels in each of these categories Prepare the other youth in your club to work cooperatively with the child with a disability

22. What support can 4-H provide to help volunteers involve more children with disabilities in club work? The Florida 4-H Program is working very hard to make the program more appealing and accessible to youth with developmental disabilities. Activities taking place or being prepared include trainings such as this one, recruiting volunteers to establish new clubs, recruiting children with disabilities, and adapting projects and activities to the needs of individual youth. Please do not hesitate to contact our office for the support you need as you take on the endeavor of working with youth with disabilities.