What you need to know…
For a young child with limited mobility, a wheelchair can make all the difference by providing them with safety, comfort, and increased independence and participation in activities.
By Krista Boychuk, BScOT (Reg.N.S.) and Julia Gates, OT (Reg.N.S.)
There are many different factors that can influence a family’s acceptance and readiness to purchase their little one’s first wheelchair and oftentimes a visit to a seating and mobility clinic can help narrow down the decision. Some of these factors are discussed below.
Some families may receive their child’s diagnosis before birth, others at the time of birth or much later. There is a normal information-gathering process that helps families prepare for future medical and equipment needs. This includes gathering information on the benefits of wheelchair use as a tool to enhance developmental skills including social, cognitive, motor and sensory skills. Depending on when a family receives a diagnosis, some may have more “lead time” than others before a wheelchair is recommended, and therefore may be better prepared for the recommendation.
Some children have a diagnosis when their mobility and equipment needs are very predictable. The first seating appointment may be as early as 16 months. For others, there may be a progression of symptoms, and the need for a wheelchair may come later in their development. There are also children whose diagnosis makes it difficult to predict what equipment will be needed for mobility. Not knowing is very difficult for parents, and they naturally hope their child will not need to use a wheelchair for mobility.
Whenever the need for a wheelchair becomes apparent, children may need appointments with rehabilitation therapists to assist in maintaining existing movement skills or gaining new ones. Using a wheelchair is not a last resort and it is not all or nothing. It is a tool children can use for participation, and the way different families use it can be as unique as the families themselves. For example, children may:
• move independently for short distances but use a wheelchair to conserve energy during longer distances;
• move about their home or classroom on their own but use a wheelchair at recess or out in the community; or
• choose to use a sports wheelchair to participate in gym, or choose activities that will accommodate their wheelchair.
Unfortunately, it sometimes takes several years before parents realize, or accept, that a wheelchair will help the child keep up
with their peers and the increased demands of daily living.
Families want their child to be safe, and using a wheelchair can contribute to safety. If a child ambulates on his or her own for short distances but starts having falls with longer distances, the family may decide, with the encouragement of health care providers, to consider a wheelchair. Sometimes it is a critical episode such as a broken bone that prompts a family to consider a wheelchair for future safety. The ideal situation would be for a wheelchair to be in place well before this happens.
Families may have concerns about the funding options available to them to support the purchase of a wheelchair. This may affect whether, and when, they decide to acquire a wheelchair for their child. Health care providers and staff associated with seating and mobility clinics are one source of information regarding funding sources, and can work with families through this process. Other families can also be a great source of information. At the IWK Health Centre in Halifax, families are encouraged to become actively involved and knowledgeable about all of the funding options available to them.
Parenting is different for everyone. Some cultures encourage independence earlier than others. Even within a culture there are differing views of independence. Seating and mobility is about maintaining abilities, and optimizing independence and participation. It is about children having the opportunity to explore their environment in a different way, which in turn leads to increased self-esteem, motor and social skills as well as overall learning. As clinicians, we encourage families to have hopes and expectations that involve mobility and participation. Families tell us how the wheelchair has had a positive impact on their child’s quality of life and development, and many wish they had started the process sooner.
Once the decision is made
Families need to be aware that once they have decided the use of a wheelchair will help meet their child’s goals, they will still need to go through a process that takes time. A referral needs to be made to the seating and mobility clinic, and there may be a waiting list. Information may need to be gathered from other members of the care team, including (but not limited to) physicians, therapists and teachers. The first appointment is generally for a seating and mobility assessment of the child, and identification of the family goals. More appointments may be required for equipment trials and to determine the appropriate wheelchair. Funding sources will need to be contacted and secured before any equipment is ordered. Equipment orders may take up to six weeks for delivery, at which point fitting appointments are scheduled.
Management and care of the wheelchair
The acquisition of a wheelchair brings a set of logistical issues, which will be easier for the family if some pre-planning occurs during the assessment and trial phase. Issues such as training in various settings, maintenance, storage and transportation require some thought and planning by the family and team members involved. Health care team members need to address these issues quickly with the family, and offer support and assistance, in order to ensure the family accepts and is ready to use the wheelchair as part of their daily routine.
Timing is everything! Parents need information in a timely manner, and their child needs to be referred in a timely manner. Use of a wheelchair should be timed to increase the child’s ability to move around and explore their world as independently and safely as possible. More often than not, children are fully engaged with their wheelchair experience and all of the benefits it brings. The medical term for walking is ambulation. All children ambulate; it is just that some of them are wheelchair ambulators.
Krista Boychuk, BScOT (Reg.N.S.), is an occupational therapist for the
Neuromuscular Clinic at the IWK Health Centre in Halifax, Nova Scotia, and addresses the seating and mobility needs for the majority of clients with neuromuscular disorders at IWK.
Julia Gates, OT (Reg.N.S.), has worked as an occupational therapist at the IWK Health Centre in Specialty Seating for the last 22 years, serving children from Nova Scotia for their seating and mobility needs.