teaching young students about disabilities

All packed & ready to go!

As I am getting ready to pack for camp there are a thousand questions poking my brain, dancing around my head with sly little smirks on their faces -- like they all have some huge secret that I don't know about. Usually I would be annoyed but this time I don't mind, instead of annoying me, this time around the unknown is exciting and it's also one of the few times in my life where the unknown hasn't cast a long shadow of fear!

As I am packing for the next five days this is what is going through my head:

"Why do I own 12 pairs of jeans?? This is absurd! And how did I pick-up so many free t-shirts from those non-profits that I worked for and interned with?! I literally have an entire wardrobe of idealistic slogans and calls to save the world!
I have no idea what I'm getting myself into as a camp counselor but that's okay. I am telling myself it's going to be fine because I will fall back on my love of helping others, of working with kids, of helping others face challenges, and I hope I will be laughing throughout the entire week. Yes, even when that huge creepy crawly comes near me in the middle of the woods in Maine - I will laugh. As opposed to screaming like the pipsqueak that I can be... okay, I will try my hardest not to scream.

Seriously though:
I am most curious about the group of kids that I will be working with. The camp is geared towards kids who fall somewhere on the Autism spectrum (some have other disabilities as well) -- and I'll admit that I have little to no experience with working/camping with kids with Autism. But I have been assured that no prior professional experience was needed so what can I say? I really am just a sucker for adventures and mystery! Usually I would have done all the research, talked to my friends who were Special Ed majors in college, or thought about various scenarios and how I might react - but not this time around.

From what I know of Explorer's Camp it seems to be just like any other mainstream camp but with the flexibility in the schedule, a and day-to-day routine that works with the various challenges the campers may face. Whether it's extreme anxiety, difficulty following directions, or participating in group activities... ultimately I get the sense that at Explorer's Camp it doesn't matter what the challenge is, the camp works for and with the child. How I wish the real world, the world beyond Explorer's Camp, beyond the next five days that I will experience could function like that always! Imagine a society that works for and with any disability! It almost sounds like a vacation from my usual routine! Instead of the individual constantly needing to find ways to adapt to the everyday, this time, at least for a little while -- it will be my job to help flip their societal expectations a bit. Of course, I am not naive enough to believe that in the span of 5 days I will reverse societal expectations of how people with disabilities live their lives, but it is my hope to help someone at Explorer's Camp believe that it just might be possible."

So that is what is going through my head and I can't wait to update my readers on what my experience was like when I get back. In the mean time, I hope you enjoy the rest of this week's blog posts while I'm away!!

Rays of shine,
Sandy

Soon you will be sending your child to school; for some of you it will be just another year and for others it will be your first time! This first entry is geared for parents and tomorrow's post will be geared specifically for the students. Note - The content below is most appropriate for those attending K-5; I wrote a separate entry for those Transitioning to Middle School

For Moms & Dads: For the younger crowd their school day is chock full of activity and movement: There's circle time, Phys. Ed, show & tell, story-time, free-play, sing-a-longs, and everyone's favorite: snack time & recess... all among a roomful of twenty or more children. Of the details that I do remember from elementary school I certainly don't remember ever sitting still (though that might just be me...) The jostling, running, squirming, chattering, singing, and constant movement of the school day for younger children is fun! And while I am no educator, I know that all the silly games and sing-song chants has its own educational purpose. However, all of this joyful commotion might prove to be a dangerous environment for a young child with brittle bones. I'm sorry to say but your journey of growing gray hairs and worry lines has only advanced to all new levels.

Just as with any other aspect of an O.I.'ers life precautions should be taken in school. Should you make a presentation to your child's class about O.I.? Will there be 'social consequences' for your child if you "make a big deal" out of the O.I.? Should you ask the teacher to assign a "helper buddy" for your child? What happens when a fracture occurs? (Because we all know they will...) What if there's something going on during the day that is physically uncomfortable/painful for your child - will he or she feel comfortable addressing the situation? These and many other questions are probably whirling around your head, especially if your child is just beginning their school experience!

Before I get into the tips for The Mom & Dad readers, let me just say one thing: You Cannot Always Be Hanging Around The Classroom, And Nor Can You Go Poking Your Head In The Door Every Five Minutes. (Regardless of what grade your child is in!!) It's distracting, embarrassing, annoying, ... and really? Do you really want to be known as that parent? Aside from all of that though, one of my favorite parts of school was the fact that I WAS away from mom, dad and the rest of my family (sorry guys, the truth hurts). It was a time for me to, on some level, manage myself! My 12+ years in the classroom taught me skills in independence, and it was a time when I could feel like a 'normal' kid.

Helping the School Handle...Well, Everything:

(I can't possibly cover everything a parent might be worrying about in the tips below, so if you have any further questions never hesitate to email me at oi.perfect@yahoo.com Chances are, if you are wondering about it then so is someone else!)

Whether you choose to make a presentation on O.I. to your child's class or not the decision should be based 99.9% on what your child says, and how s/he feels. If you have a particularly shy child this could be good and bad. While s/he might feel that this is a good route to take so that they can feel safe, they might also feel totally embarrassed! On the other hand, if your child is shy - a presentation will basically be introducing them to the entire class while a parent is present. Kids who are not shy, well... if they feel comfortable with the idea then, why not?

If you go with the presentation idea (I have taken this route a handful of times) these are some things to definitely include: Compare the fragility of the bones to something everyone can relate to i.e. an egg shell, or glass. Telling young kids that "Sally's bones will break if you push her or if she falls.." doesn't paint an accurate picture in the minds of a young child. If you have old casts lying around share them with the class! Depending on the severity of the O.I. remember to mention that fractures can happen for the simplest of reasons i.e. a cough or a sneeze. Explain the purpose of the wheelchair, the walker, and leg braces if necessary. In the past I have told my classmates that my leg braces are like shin guards they might put on if they play soccer or hockey, and they basically serve the same purpose. When the time comes for questions and answers, allow your child to answer as many as possible!

If your child uses a manual wheelchair and a walker during the school day make sure that there is an easily accessible place for the equipment. Whether it's by the teacher's desk (where other students are not allowed to go) or somewhere in the nurse's office, medical equipment should be stored in a safe & accident-free zone

There are lots of picture books about young kids in wheelchairs who go to school; if it's appropriate you can ask the classroom teacher to choose one of them to read and discuss with the class. These discussions, when handled well, will not focus on your child in an awkward way but instead allow everyone to feel inclusive; and if your child feels comfortable s/he will contribute to the discussion in a very natural way

Have a Fracture Plan. I know that many parents these days have "break bags." If you feel the need to make one that is for in school use only and if you are comfortable with the teacher or school nurse putting a temporary splint on then train them as appropriate. I will admit that my parents never allowed anyone in the school to touch me. If a fracture happened in school I was quickly taken out of the classroom by my classroom aide (or put in an isolated area in the classroom) and my mother was contacted

Make sure that you get all the necessary doctor's notes that will be needed to authorize the school to give your child pain medication. This also includes directions from your child's orthopedic or physical therapist about appropriate physical activities, exercises, and most importantly: what should not be done.

If your child has a classroom aide see if you can meet this person before school begins. This will allow time for your child to get comfortable with the person who will be "the one in charge" and it will also give you time to help train the person if necessary. Things like how to pick your child up, how to put leg braces on, how to fold the wheelchair, and what to do when there is a fracture. This might also be a time to talk to your child's aide about things your child likes to do for fun; sometimes these activities can be done during recess with friends, or when your child is sidelined during Phys Ed due to an injury. Over all, the more comfortable and the better your child knows his or her aide the better the school-day experience will be!

One tip that helped my comfort levels throughout elementary and middle school was that my closest 2 friends were always going to be in the classroom with me. I might not know which teacher or which classroom I would be in, but I could always count on a few familiar faces to goof around and bond with. I'm actually not sure who was in charge of this arrangement (whether my parents or my school teachers), but I'm sure if you asked the classroom teacher about it for the following year something can be arranged.

There were countless times when my parents would get into arguments with the school nurses. They would insist their medical knowledge trumped how well my parents knew me and how to manage my fractures. At times school administrators would look at my parents in disbelief if my mom came to school to put a sling on my arm and then sent me back to class, "You're not going to take her to the doctors right NOW?! But there's liability! We can't risk her getting hurt even more!" "She's fine. It's not a big break, she isn't crying, we will go to see Dr. Shapiro right after school. She can't miss out on learning.." Expect that these conflicts will happen. Be patient but most of all be firm with where you stand and what you know!

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Dear Pre-Camp Self,

Going to School (Part 1) - For Moms & Dads of O.I. Children K-5

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