Tips for parents to support inclusive education
Source: Multi-IN Manual for parents and family members on multidisciplinary care and inclusive education of pupils with spina bifida and hydrocephalus
Helping children achieve optimal independence in everyday life and build functional life skills is critical to achieving independence and self-confidence in children with spina bifida and hydrocephalus. Independence can be both physical and emotional, and it is very important that the parents help the child develop both aspects starting from an early age. This can be achieved by:
● allowing the child to make choices and take part in the decisions about his/her life by discussing with the child the possible options and the corresponding consequences. This applies to everything – from small decisions about clothing and food, to more important ones such as choosing a school, a doctor, etc.;
● involving the child in the planning of free time and trips, taking part in ordering consumables and aids, doctor visits, etc.;
● involving the child in the process of taking care of his/her own health and maintaining personal hygiene. It is important for the parents to familiarize their children with how their bodies work and what care they need to take to stay healthy. When it comes to self-care, early mastery of functional skills such as changing clothes, washing and bathing, self-catheterization, etc., is extremely important;
● allowing the child to take part in the housekeeping, depending on his/her age and individual abilities – cleaning, tidying up, sorting laundry, caring for younger siblings, preparing a shopping list, etc.;
● paying attention to the financial and administrative literacy and purchasing skills – creating a budget, going shopping, paying with cash, a card or online, keeping and storing documentation, etc.;
● timely introduction of the necessary aids to provide maximum mobility and independence of the child, according to child’s physical abilities and age – wheelchair, walker, orthoses, therapeutic chair, ergonomic writing aids, etc.;
● teaching the child to express his/her needs and to seek help when the child cannot take care of them alone;
● teaching the child to accept help from people outside the family, not just from family members;
● encouraging the child to develop social skills and build friendships with peers – attending kindergarten, going regularly to the nearby playground, welcoming his/her friends at home;
● supporting the child’s interests and helping the child develop his/her strengths – taking the child to training and other activities, asking the child to try new activities.
A focused effort and a full awareness of how important independence is are required on the part of the parents. According to a research in the US, most children with spina bifida experience a delay in independence development of two to five years compared to their peers (Logan, 2020). This delay includes the development of skills such as changing clothes, planning activities with their peers, preparing pre-planned meals, etc. Because of over-parenting or just to save time, many of us choose to carry the day-to-day responsibilities of the child and to make decisions on the child’s behalf. The gradual transfer of responsibilities to the child requires awareness, time, effort and a lot of courage, but in the long run this will pay off many times over.
The degree of physical independence that could be achieved is different for each child. There are young people and adults with spina bifida and hydrocephalus who are unable to self-care or move around without help. They also need emotional independence and the right to make independent informed decisions about their lives or to make choices about the help they need and who should give it to them.