Sarah-Hope transitioned from a government to an independent school
during the pandemic so our focus for the last couple of years has been
adjusting to a different curriculum and learning methodology rather than
physical adaptations.
A child with physical challenges can be expending up to double the energy that typical children do in a school environment just to participate in the programme. This along with the transition to increased independence that all children make in the intermediate phase of school meant that we needed to look at ways to increase physical support for Sarah-Hope.
The air that one breathes
Sarah-Hope was visibly experiencing breathlessness and fatigue. The
extra isolation / protection that the pandemic provided meant that we had a gap
to make some significant changes in her diet and physical therapy regimes
without these being interrupted by illness. However, by October 2021 when the
Covid regulations began to relax after the third wave, she got a lung infection
followed by another that December. Her paediatrician recommended that we have a
follow up scope with a paediatric pulmonologist to relook at her anatomy in
more detail.
The brochoscopy and larynscopy confirmed Sarah-Hope’s narrow airways and
unusual lung anatomy which made sense of her breathlessness. The existing lung
damage in one lower lung was of concern - the damage is irreversible and the
compressed lower lung is very susceptible to infection.
Sarah-Hope also had a check up with her cardiologist - in 2018, he was concerned that the clip that was used to repair her congenital heart defect might be obscuring the entrance to her one lung but since she has grown that is no longer a concern. Although her breathlessness was certain, her heart wasn’t under strain which was a relief.
The main outcome of the investigation was that the doctor motivated for a special nebuliser for Sarah-Hope (PARITurboBOY) used by children with cystic fibrosis:
Sarah-Hope nebulises every morning with a few ml of saline. It also has a vibropep attachment - as she breathes in the saline, she breathes out through the vibropep and experiences a vibration through her lungs. This daily treatment improves her lung capacity and increases her energy substantially. She is more mentally alert and able to increase physical participation which is amazing!
Embracing physical adaptions
When Sarah-Hope was a toddler, an OT explained to me that it would
become increasingly important over time to provide her with adapted equipment.
Sarah-Hope is constantly adapting to her environment so in certain places it
will provide immense relief to have equipment that works for her body where the
burden isn’t on her to adapt.
When she was younger, I didn’t take this approach. Every solution seemed too difficult to come by. Having certain stipulations about what spoon she should use for optimal functioning, for example, meant that we couldn’t just slot in and be with people where they were when we actually had the capacity to be in community. And managing the difference between the OT / expert’s advice on what adaption should look like and Sarah-Hope’s own problem solving was exhausting. Furthermore, spending money on all sorts of ideas that you don’t know will provide genuine relief was unsustainable.
The introduction of adaptive aids is also a difficult emotional process. For every one, Sarah-Hope would need to come to the point of:
a. Realising that doing what everyone else does is not optimal for her
b. Accept / grieve that she was going to need something different
c. Adopt the aid / device and embrace what it accomplishes for her
d. Integrate it into our lifestyle
As she’s gotten older, Sarah-Hope’s knowledge of her body and her environment has improved dramatically. She’s so up for participating in what is going on that you usually don’t hear her mention comfort. But as adaption becomes increasingly taxing on her body, the relief that supported seating and writing aids provide makes a substantial difference to her endurance. And she actually acknowledges this and can articulate it. The physical strain can be physically detected in her body from the neck down.
The challenge of writing without arms
Without arms, handwriting is incredibly taxing on the body. The constant
rotating of the trunk from side to side, along with having to move from the top
to the bottom of the page makes writing in any book hard work. A piece of paper
is easier to move along and up and down to where the writing hand is although
you ideally need the other arm to stabilise the paper.
Because of the lack of arm length, Sarah-Hope’s head is very close to the page and she isn’t able to have a whole page perspective when she looks at her work. A slanted desk would be better in terms of her having her view of her page - but then the top of the page is even further away from her hand. Using prestik or a clip to secure the page would mean it isn’t easy to shift the page around to another position.
Having said all this, Sarah-Hope’s handwriting is beautiful and if you saw it you would never actually guess that it was hers. The school she is at has a big focus on writing and I wanted her to get the benefits from this while it was still physically viable for her.
Sarah-Hope had already started experimenting with typing on her iPad in Grade 3 and her teacher remarked that she was able to keep up with her class this way. This reduces the anxiety of falling behind and helps her to keep her attention on her work.
Ergonomic set up in the classroom
The advice we got from Sarah-Hope’s OT and physio was to:
- Start with her seating. The right seating solution is the foundation to the set up
- Then work out the positioning of the iPad / keyboard etc so that she can be supported to concentrate for an extended time
We had a height adjustable chair provided by the amazing team at ShonaQuip.
The lateral supports Sarah-Hope’s trunk. One doesn’t realise how much children with arms use them for postural support - Sarah-Hope is always working really hard to hold herself up.
Onto the chair, a stabilo cushion was placed. This support for her trunk muscles allows for better breathing which is the foundation of being able to participate.
In the end we decided that using the iPad as a screen and typing with a synced keyboard positioned close to her hand (using a music stand) would allow the best positioning.
Other physical support
Sarah-Hope aims to wear her full leg orthotics at school for an hour most days of the week. This sustained stretch helps not only the muscles but the joints and skin too.
She has started using the wheelchair at school during break times and has absolutely loved the opportunity to gain greater access to the playground and enjoy movement. When her wheelchair isn’t available she uses her ride-on device, Zain.
Sarah-Hope's sister and friends in class assist with her set up - I'm hugely grateful to them for their care and support, as is Sarah-Hope.
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