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
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.
In January 2012, Ben went to the
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. Montreal
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:
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
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.
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.
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.
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.
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).