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Fit for Life

PREPARING YOUR CHILD FOR THEIR FUTURE

Making Choices

Beginning in the early years, provide regular opportunities for your child to make choices, problem solve, and even make mistakes. This may be simple occurrences such as the pre-schooler choosing their clothes for the day, the 10-year old choosing their room decorations. When children have opportunities to practice making choices, recognising successes, and identifying problems with their choices and options for solving them they become more equipped to function independently and interact with others.

Access to Social Opportunities

Individuals with Spina Bifida should be given access to the same social opportunities that are available to their peers. This can be accomplished by providing age-appropriate experiences to include interactions with others in social situations, both in and out of school, and offering opportunities to participate in community activities such as play groups, scouting, volunteering, clubs, camps, church activities, and classes. These are venues through which individuals with Spina Bifida can identify and build on their personal strengths and thereby increase self -esteem and confidence as well as opportunities to practice social skills. These activities can also provide alternate learning opportunities for children and youth who may have a hard time with the “ABC’s” of school.

Equipment

As early as possible, begin teaching your child about his/ her adaptive equipment such as how to breakdown, transport, and set up their wheelchair enabling them to be independent and socialise with their peers.

Develop Interests

Provide opportunities for the child with Spina Bifida and Hydrocephalus to develop interests and make choices regarding their hobbies and other recreation activities, such as fishing, visiting museums, music, dance, art, and sports. The child’s interests and preferences will change over time, which is a normal part of growing up.

Whatever their interest, each experience will provide ways for the individual to develop friendships with peers who have similar interests and to build self-esteem. These experiences will give children, teens, and young adults with Spina Bifida the opportunity to demonstrate and develop social skills and to develop a sense of identity and belonging.

Advocacy

Become knowledgeable about the Disability Act and the EPSEN. Knowledge of this act can enable families to advocate for themselves and/ or their child regarding access to the environment and participation in all aspects of community living. Families are often their child’s best advocate and can be great role models for teaching these skills. However, it is essential to also provide opportunities throughout the primary school for the child with to learn about his/ her rights and to practice advocating for him/ herself so that the child can grow towards independence.

Exercise

During the early years through the teen years, families can encourage and participate in regular exercise and physical activity for themselves and the child with Spina Bifida. Physical activity can help to increase strength, dexterity, and balance all of which can improve the skills needed for dressing and transferring.

Self Care Skills

Families can begin teaching their preschool child with Spina bifida the same general self care skills that all children learn, such as brushing their hair and teeth, dressing, and bathing. Fostering self care abilities can help children with Spina Bifida feel more confident and self-assured. As the child matures through the school years, teach him/ her about proper rest, body awareness, stress and pain management, and hydration. There may be some self care skills that are specific to Spina Bifida, such as bowel/ bladder programs, taking medications, skin care, and transfers. All of these self care skills will enable individuals with spina bifida to take charge of their health and increase their independence.

Self Management

As children with Spina Bifida enter the school years, families can provide opportunities for them to begin learning steps to manage their health care needs, such as asking questions at doctor visits, keeping medical records, making appointments, and obtaining prescriptions. In the elementary years, the child might prepare questions with the assistance of a parent before a doctor’s visit, and progressively increase their level of health care independence in the teen years. The health care needs of individuals with Spina Bifida can be complicated, so it is important for youth to begin practicing self-management of their health care early.