The spina bifida lesion causes paralysis of varying degrees:
Some children have no movement in the lower trunk or legs, while others have virtually normal movement. Most children will be somewhere in between. Some children will walk independently, perhaps with small splints on their legs. They may have poor balance or poor endurance for long distances. Others will walk with splints (or more supportive walking gear) and a walking frame or crutches. They will normally use a wheelchair as well. Others will use a wheelchair most or all of the time.
All children need adequate access to their kindy/preschool/school setting.
This means access to classroom, play area, toilets, tuckshop etc. Often extra room is needed to manoeuvre within the classroom. Some children can quite easily crawl or bottom up and down steps. Whether this is appropriate depends on the age of the child, where the steps are, how the child feels etc.
TRANSFERS AND LIFTING
Lifting of school-aged children should be kept to a minimum. Most children with spina bifida who use a wheelchair, can learn to transfer themselves (with or without assistance) from the wheelchair to the floor and back, from the wheelchair to other seats and back etc. This should be encouraged as much as possible. Advice on this matter should be sought from parents or from a therapist.
It is important that small children who use a wheelchair should not spend all their time in the wheelchair when other children are playing or working on the floor. Being down on the floor encourages social inclusion, as well as involvement in the same activities as other children. For some small children, other equipment such as a castor cart, which is down at ground level, may be appropriate for outdoor play.
Many children with spina bifida need special consideration of their seating.
Many children who walk may need a smaller chair or table, because of short stature. Some may need a footrest so feet are supported and not dangling. This assists balance. Correct desk height also assists fine motor skills.
Many children who use a wheelchair can and should sit in a normal classroom chair at pre-school and school. This makes them more a part of the group. If it is more appropriate to sit in the wheelchair, a special desk may be needed so the wheelchair fits under easily.
How well and how much a child walks depends on many factors besides how much movement he or she has. Motivation is an important factor. Some children love to walk and walk well with the appropriate gear. For others, it is a real chore. There are many benefits of walking:
- Improves fitness
- Helps prevent deformities, e.g. keeps hips and knees straight and feet flat
- Improves strength of bones through weight bearing and exercise
- Improves upper limb strength, needed by all for wheelchair use, transfers, etc. as well as walking
- Improves bladder and bowel function; gravity and exercise help with these
- Improves circulation and helps prevent pressure problems of skin
- More normal visual input
- Sometimes the child looks at the world from the same level as everyone else when standing
- Improves social interaction, e.g. when standing at a table or workbench. However, a wheelchair is much better if children are out running around
- Improves accessibility. Being able to access high benches, cupboards etc. However, a wheelchair is much better for travelling long distances.
WALKING AND USE OF WALKING GEAR IN A PRE-SCHOOL OR SCHOOL SETTING
This must be agreed between parents and the school with advice from a physiotherapist where appropriate. It must be practical and fit in with both the school's needs and the child's educational needs. Obviously, it is good to achieve regular walking at school if that is possible.
Many children get their wheelchairs at about 3 years of age, so they are usually quite proficient with them by the time they go to school. They can usually manage:
- Ramps - if not too steep.
- Rough ground
- Small lips
However, gutters are very difficult for a small child. It may learn these as it grows older.
BENEFITS OF WHEELCHAIR USE
- Quicker than walking
- Requires less energy and therefore reduces fatigue.
- Allows the child to keep up with others
It is often helpful if early rules regarding wheelchair use are set at school e.g. other children are not to help more than necessary. Peers often love to push the wheelchair or to fetch and carry for the child. There are two issues with this:
- Independence: children should be expected to do as much as they can for themselves.
- Safety: young children pushing wheelchairs can often be a safety risk.
There are many issues that may be relevant to mobility. Consider which ones are relevant to your situation. Parents are the experts on their children. Ask them for advice. Ask the children themselves what they can do. Do not assume they cannot do something without checking it out.