I am all wrung out.  R had her first appointment with the wheelchair service this week. It was arranged by the new council OT.  She is astonishingly pro-active.  I had requested a referral to discuss whether R might qualify for funding to help us pay for the house adaptations that she requires.  The OT was surprised by how little equipment R has.  The complete inventory comprises a stair climber – obtained optimistically four years ago for the used of care workers providing the home-based respite that we still await – and a Maclaren Major Buggy.  By the time she left, the discussion had covered every aspect of her care;  she even provided advice around toilet training.

On Friday, our first pieces of adaptive equipment arrived: a bath lift and a Heathfield chair.  We have reservations about both.  But the OT’s goal with these is to increase not limit R’s independence.  We also discussed R’s mobility.  R is pretty lucky.  She can walk for a start.  And her back is straight.  But she can’t walk far and, at 9, she is starting to get too heavy for me to carry.  R got her buggy just before she started school. The OT felt that a review was long overdue.

R was nervous as we entered the room.  The clinician walked ahead pushing R’s buggy. R was gripping tight onto me with both hands and dragging her feet.  Clinical consulting rooms all look the same and, for R, are associated with discomfort, pain and disappointment.  The clinician, an OT, was very nice and R soon relaxed.  She explained that, in her view, it was probably time to think about a wheelchair for R.  She said that wheelchairs are more age appropriate than buggies, that a wheelchair raises a child up to a more normal height, that people in the street are more accepting of older children in wheelchairs than they are of children in buggies and are less likely to stare.  I think that it was at around this point that I started to cry.

I hadn’t expected to react like this.  It’s not like there is big difference between pushing a 9 year-old in a buggy and pushing the same child in a wheelchair.  And yet there is.

The clinician went to get a chair while I composed myself.  R was impressed.  A little chair with a metallic red frame, it apparently also came in pink. R chose pink with large orange wheels (decorated with daisies). She was very excited to convey this news to her friends at school yesterday.  I am just barely holding it together.



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