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Section 3
What’s Needed at Home
An occupational therapist should carry out a home visit to clarify your needs.The
home may need to be adapted quickly in line with the progression of the illness.
We received help with installing a barrier to prevent Katie from falling out of bed, a
bannister was ftted to help Katie up and down the stairs (while she was still able to
walk), then a stair climber was hired to take Katie up the stairs, and we were given
items such as an infatable ring to help give Katie a bath.
A physiotherapist may also get involved if your child is mobile – for example Katie
was able to go swimming in the hydro pool at our local hospital,which she really
enjoyed. She also had help from a qualifed teacher while at home and this helped
keep her occupied and mentally active for a short time (around fve weeks).
You may decide that now is a good time to have some professional photographs
of the family taken as this may feel like a positive and celebratory step at this
diffcult time.