During one of my previous pracs I was invited to attend the first fitting session of a new electric wheelchair for a young disabled child “Amy”. Amy had been receiving physiotherapy treatment from a very early stage when it was noticed she was a very quiet and floppy baby. Amy exhibited hypotonia, significant developmental delay and was under the care of a paediatrician however after a number of years of care, no formal diagnosis had been made as to the cause of this condition.
Given Amy’s condition she was well known to all of the multidisciplinary team who had been involved at one point or another with her care. Amy was also well known to the local community who had supported fundraising efforts by the family so that they could afford an electric wheelchair to provide her with mobility and some independence.
On the day of the fitting my supervisor, a senior OT and I travelled to their house for our appointment. We discussed that ours aims of the session was to assess and modify Amy’s posture in the chair, provide some education to her parents about its capability and assess the chair ourselves as none of us had actually seen this model before.
The session went mostly as plan as we adjusted Amy’s positions, assessed the chair and helped answer questions from her parents. However Amy’s mother complained that she was not able to drive the chair with the adult remote on the back. The chair was fitted with a set of controls that could be operated by the parents while walking behind the chair and while the controls were a bit sensitive it was not that hard to drive the chair.
When Amy and her dad had gone for a practice Amy’s mother confided in us that it was not so much about driving the chair but rather what it meant for her and Amy. She felt that until now Amy had been like any other child in a stroller out in public, but now everyone would look at her and know she had a disability. Emotionally Amy’s mum found the wheelchair hard to deal with as it was a real reminder of Amy’s condition, compounded by the fact that they were still without a diagnosis.
My supervisor encouraged her to talk about her feelings with friends and family and highlighted the benefits for Amy with have the chance to have her own independence to explore her environment and be mobile. I found this experience was a big eye opener for me as to the experience of a parent who has a child with a disability. I had wrongly assumed that as parents they would have come to accept her disability but now I have a better idea of how hard it is for parents in this situation.
1 comment:
That sounds like a difficult experience to deal with, as it is such a sensitive issue. It sounds like your supervisor gave really good advice to the mum, to not only talk about her feelings, but also highlighting the positive aspects of the chair for her daughter.
It must be hard for the parents to have numerous health professionals intervene with your child, and even though everyone has the child's best interest in mind, the parents may feel helpless or feel like we are making the disability more obvious.
Being empathetic and tactful as a physio is so important, especially with kids as you are not only dealing with the patient, but their whole family. I also learnt this on my peads prac, and tried to involve the parents as much as possible and explain why we were doing what we were. By understanding or having someone point out the positive things, can have such an impact on the way you view or deal with an issue, which sounds like what you and your supervisor did in this situation.
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