(It's looking like this is going to be four-part series. And just in case, here are
Part 1 and
Part 2.)
The week before school started I contacted the school to set up a meeting so we could meet Ben's aide and discuss in full detail how we expect school to work for Ben. Before the meeting, I drafted up the following document and sent it to the resource teacher to share with whoever will be dealing with Ben this year in any capacity. This is what I sent:
Background on Ben
Diagnosis
Ben has cerebral palsy, CP for
short. CP is an umbrella term used to describe conditions that relate to
brain injury that cause problems with movement and posture. CP can affect
a person's ability to walk, talk, sit, eat and think. The most important thing to remember about CP
is that it affects every single person who has it differently. For some
with CP, the condition is barely noticeable. For others, it can be so severe
that the person relies entirely on others for help with mobility, eating and
self-care. Ben is somewhere in the middle. In some ways, I would
say that Ben's CP is mild as he can talk, eat, and use his hands. He is
also smart as a whip. However, when it comes to walking, Ben's CP is more
in the moderate range as he is not completely dependent on a wheelchair to get
around but yet is unable to walk without help.
Specifically, Ben has
spastic diplegia CP. “Spastic” means that the muscles
affected have increased tone or tension. “Diplegia” means that both legs
are affected.
Medical History
In January 2012, Ben went to
the Shriners Hospital
in Montreal for
a Selective Dorsal Rhizotomy (SDR). This
surgery was performed on his spine and over 40% of the nerve rootlets that send
signals to his legs were cut. This was
done to “stop” the incorrect signals that his brain was sending to his
legs. After the surgery, Ben’s gross
motor skills were basically back to ground zero as he couldn’t walk, crawl or
sit anymore. He spent an additional 6
weeks there for an intensive rehabilitation program.
Our hope is that this surgery
will allow Ben to eventually be able to walk without any aids indoors and use
forearm crutches when walking outdoors and on uneven ground.
Gross Motor Skills
This is the area where Ben is
primarily affected. Ben can crawl, sit
up, stand with assistance and walk with assistance. He is also able to transfer himself between
these positions. Ben can walk very well
with his walker as well as with quad canes.
He is currently learning how to walk with forearm crutches.
At school, there will be 3
options available for Ben:
1.
Walker –
This is to be used when outdoors or for walking longer distances. His walker allows him to walk at a reasonable
pace and keep up with his classmates.
However, one of our goals is for Ben to transition from using his walker
to using forearm crutches and we want to limit its use to the instances noted
above.
2.
Quad canes – Ben is very functional with his quad canes. However, he is much slower with these
canes. Also, if there are lots of kids
around and he gets knocked over, he would definitely fall and could perhaps get
hurt (unlike his walker where if he holds on, he won’t fall all the way to the
ground). However, these canes force Ben
to walk with a better gait as well as to use his own momentum. They also help strengthen his core and
improve his balance. It would be great
if these canes could be used whenever possible such as when going back and
forth to the bathroom and when walking other short distances.
3.
Wheelchair – Ben’s wheelchair will be at school. I expect that it will be used to transport
Ben back and forth to school. It is also
there for fire drills or the occasional field trip. However, we would prefer if his wheelchair is
not used on a day-to-day basis at school.
The overall goal is to allow
Ben to keep up with his classmates and get around the school and playground on
his own while also pushing Ben to improve on his gross motor skills at the same
time.
In the Classroom
Once seated in the classroom,
Ben should not be treated any differently than any other child. His fine motor, speech and cognitive skills
are all at or above his age level. That
said, in order for Ben to use his hands optimally, he needs to be
well-seated. His chair needs to be at
the right height for the table and his feet need to be touching the floor (or a
footstool).
For floor time, Ben will be
able to sit on the floor with his classmates.
Because Ben wears AFO’s (ankle-foot orthotics, we just call them
braces), it is difficult for him to get into “criss-cross” sitting on the floor
and therefore he will “w-sit”. This is
not an optimal position for any child to sit in as it can cause strain on the
hip sockets but as long as the time spent on the floor in this position is less
than a half-hour at a time, Ben’s physiotherapist has said that it is OK. We do not want Ben sitting in a chair at
floor time as we want him to be on the same level as his classmates as much as
possible.
Self-Care
This is an area where Ben
struggles. While he is completely
potty-trained, he needs help with his clothing when going to the bathroom. He can stand up to pee with support (i.e.
with his canes or walker to hold on to, or even an adult’s hands). He also needs help to get onto the toilet for
bowel movements. He can sit on the
toilet unsupported as long as he has a ring reducer to sit on (which we will
provide).
It should also be noted that
like other children, Ben tends to wait until the very last minute to go to the
bathroom. However, unlike other
children, he can’t run there quickly. At
home, we tend to watch for signs that he has to go (like lots of squirming) and
encourage him to go before it’s too late!
Ben also needs help to get
dressed and take his shoes on and off.
That said, when possible, Ben should be encouraged to help with these
tasks as long as it’s not cutting into time on the playground or the classroom.
Extra-Mural
Ben has been referred to
extra-mural for both physiotherapy and occupational therapy. Ben and I met with the extra-mural PT in July
and agreed that she would see Ben at school once every two weeks.
I would like for the
extra-mural OT to review Ben’s seating in the classroom and provide
recommendations, if necessary. However,
I really do not want Ben seated in his wheelchair in the classroom. At this time, I don’t expect that Ben will
need regular OT for his fine motor skills, however, the OT may be able to
assist with Ben’s self-care skills.
Other
1.
Allergies
Ben is allergic to eggs and
animals. When he eats eggs or touches
animals, he usually gets a rash or a few hives.
This can be treated with Benadryl.
Ben has not yet been exposed to nuts or shellfish on instruction from
his pediatrician.
Previously, Ben did have an
epipen however this is no longer necessary.
Ben has never had an anaphylactic reaction. Even if Ben does ingest something prepared
with eggs (such as a cookie), he doesn’t always react, and if he does, it is usually
just a hive or two.
2.
Heat
As is common for children with
CP, Ben is extremely sensitive to heat.
There is nothing really to be done for this, except to be aware of it
and to avoid it where possible (i.e. keep Ben in the shade if outdoors on a hot
day).
To be continued in Part 4...
