Sarah-Hope
has not had a bad year health wise but she definitely has not had the
capacity for the full school week. On a good week, she spent one to two
days at home resting. Her body has to work hard to keep up with the
school routine so it makes sense that she is more tired than others. But
because her immune system isn't the strongest, she also takes a longer
time to recover when she does get sick. Knowing we were going to have to
see how she managed keeping up at school, we had a flexible arrangement
whereby her facilitator could come and bring some school work to her at
home on days where she was strong enough to do some "work" but not at
school. This was great because she wasn't so disconnected from what had
been happening in class and when she did get back to school she could
catch up quite quickly. Sarah-Hope's development is never linear - even
if she is resting or ill she takes in a lot and processes her world and
then bounces back as if she's been practicing in her mind while she
didn't have the physical capacity to act it out. Something I have learnt
is that if Sarah-Hope is well, she wants to move independently,
participate and engage with friends. Its always a flag for me if her
attitude towards this changes - she may just need rest, and if she
doesn't get it she is likely to get sick in which case we need to
patiently build her up from dependence to more interdependence again. I
have become a bit of a "rest policewoman" as a result but it just is the
reality of our capacity and after all we've been through, I am so used
to plans being cancelled that I go into autopilot and reprioritise the
day or week or month ahead. I actually see this as a gift that I have to
often take the foot off the accelerator, slow down and think again
about what to prioritise in order for the whole family to flourish.
The most significant challenge this
year for Sarah-Hope has probably been decreasing mobility. From the
triumphant walk across the playground the day before school started...
we found that months later she was struggling to stand and put weight on
her one leg and walking was not possible on her feet. A family friend
who is a physio gave me a perspective about the way she has adapted for
functional purposes which I found quite helpful - she has become
accustomed to using her one leg as a lower limb, and the other as an
upper limb. One leg she can stand on. This is what enables her standing
transfers - her weight is all on one leg and she puts out her toe of the
other foot to balance. The other leg is her upper limb. Her ligaments
are hyper flexible which is amazing because is allows for the passing of
goods from the ground where her foot is to her opposite hand which is
where her shoulder would be. However, with this repeated movement, her
femur actually "slips over" her lower limb bones given that she doesn't
have a stable knee joint. Its a helpful reach function for her - but
the impact of that repeated movement on her limbs isn't great for the
standing / transferring / walking function.
So
what is transpiring is that (when we execute this as we should) she has
been walking on her knees, covered by knee protectors (super flexible
skater knee pads), and uses her wheelchair for transport where there is
wheelchair accessibility (school, church etc).
In our home, we've been
trying to create more floor space so that a wheelchair could be used.
However our living space is small and so Sarah-Hope is not covering
large distances inside so would prefer to walk on her knees rather than
move the chair through the space. We've recently adapted a ride on toy
for her to wheel herself across a floor space at home or elsewhere to
try keep her off her knees and protect them. Its much lighter and could
be taken easier to another home whereas the wheelchair is heavy and
needs space and ramps into other spaces because it is around 70kg. This is still a work in progress.
What has
been difficult though is to see the toughening up of her knees as they
effectively become like another 'heel', multiple skin layers rubbing off
through the pressure of carrying her weight and her knees raw. We've
wondered about plasters but the way her knees work as both feet, knees
and elbows, no plasters stick, and then she resists them at the thought
of the pain of removing
them. And what I've discovered this December holiday is that it takes
one thorn in the wrong foot or sting on a leg to collapse her as she
really can only stand on one leg which makes her quite vulnerable to
immobility. The plan for the year ahead is to get a full assessment of
her knees. We think the knee cap is missing or displaced but there could
be a lot more 'wrong' as well. So we're hoping for clarity (it will
probably take an MRI as this kid has some funky anatomy!), after which
we can figure out the best way to help her stand and make transfers.
What
was really
encouraging was hearing how Sarah-Hope was participating in the
classroom, basically on par academically with her peers. Before the end of her
first term the team felt confident that she would be progressing to Grade 1 in 2019.
Her written expression of her knowledge is obviously not the same and in
time we expect technology to play a more significant role in helping
her - but not until she's tried what everyone else is doing first! Then
as she is struggling to keep up we predict she will be increasingly
ready to adopt the assistive devices or whatever the solution may be. I
imagine this will be the big challenge of the foundation phase. For the
first time she made a comment to me at the end of the year saying, "Mom,
the other children are MUCH better at drawing than me, MUCH better. Its
not fair." I know she feels valued and supported, but amazingly I am
usually surprised when I hear her vocalise this kind of disappointment
at her "work" not looking like that of others. I imagine Primary School
will give us many opportunities to process these emotions, and then to
regather ourselves and focus and delight in what she can do.
