Purple Day

    A very nice man from the local paper came to our house last week to write an article about Purple Day and our older daughter. Our daughter has epilepsy or a seizure disorder as well as having Non-verbal Learning Disorder. Last year she gave a short speech at an assembly at her school and fielded a few questions afterwards. I was so proud of her. It's not easy for an 11 year old to tell her whole school of almost 100 kids and staff that she is different.
    This year we are participating in a lot more Purple Day events: a charity skate with Vancouver Canuck Mason Raymond, an Abbotsford Heat hockey game, a Purple Day/ Martial Arts presentation at Metro Centre and a display at our school culminating in an assembly later this week. We have been meeting other folks with epilepsy and making some nice connections. It turns out that one in every hundred people has epilepsy.  That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined! And according to the folks at The Centre for Epilepsy, many people still face barriers due to a lack of awareness about the disorder.
    I guess my daughter is that one in a hundred, at her school anyway. She is nervous about speaking in front of everybody of course, but glad to spread the word.  Forty years ago, I remember a student at my high school having a seizure and how we all stood and watched. I was terrified and had no idea what I was seeing. Now thanks to people like my daughter, if we see someone having a seizure, we will know what to do:
1. Stay calm & stay with the person.
2. Time the seizure.
3. Roll the person onto their side.
(Do not restrain the person or put anything in their mouth.)

Call 1-866-EPILEPSY or go to http://www.epilepsy.cc/ for more information. Thanks for reading!

Another Loss

    Yet another child is leaving our little school and we feel bereft. This small boy is my older daughter's "Little Buddy" and she is going to miss him terribly. My daughter has always had a hard time finding friends to share time with at recess and at lunch. She wandered around and talked to a few kids but so often was told to go away that for several years, she was resigned to picking up garbage or chatting with a particularly nice playground supervisor. That lady has since left our school so my daughter was happy to be paired up with this boy from kindergarten who, like her, has epilepsy and like her, has also got some other challenges to contend with. They were a great pair and it was sweet to see how they related to one another. I wrote about it here last year.
    I am at a loss to understand all that happened to him and why but suffice it to say, his needs weren't being met and he has had to move on to a school where hopefully, they will be.
   Sometimes families move and our population changes. As of last week, we have a new student at our school. We are glad to have him and welcome his family to our city. A new student however, does not, cannot fill the place of a well-loved and special friend who is leaving our school community. Our buddy is not leaving our neighbourhood and I'm sure there will be opportunities to come together and share. But it is not the same, my daughter informs me. There is no one else like him in the world. That is true. As his mother wrote in one of her books, "I am different, just like you."  Rab Rakha our friends...

Inclusion

     The definition of inclusion according to the Webster's New Dictionary  is the "act of including". The definition of inclusive is "including everything". Asking a child with a physical handicap to stay home from a school-wide skating field trip is not inclusion nor is it being inclusive.
     The definition of diverse, according to the same book is "different" and diversity is "the state of being diverse". When our school district states that they promote "acceptance and respect for diversity" then I would suggest that they can only do that if provisions are made to support disabled kids in the various field trips that occur at our school. That means SEA hours, resources, money.
    There needs to be much more dialogue about incidents like these. In order for our schools to be inclusive and to truly accept and respect diversity, changes must be made. I hate to use this old cliche, but it needs to be said. We can't just talk the talk, we have to walk it too.
    School is for learning. The way I learned to skate was by skating. If a disabled child can't begin to learn to skate, on a school field trip in Canada, then something is seriously wrong.

Home

    One of the joys for me of being a parent, is watching your child grow up. It's also a source of sadness but that 's another day. I also love to see my child growing out; starting to look around at the world and at the people in it and not just thinking about themselves every minute. One of the most profound moments on our recent vacation to Mexico was when my younger daughter was telling me about going to the taxi driver's house. My husband wanted to show our kids more than the Club Med Mexico and the young taxi driver took them to his house and introduced them to his mother. It was very kind. What my daughter noticed was the simplicity of the way in which they lived. She said,"Mama, they have so little, but they are so happy--- everyone was smiling and happy to be alive!"  I wish I could remember to be in that place at least once a day. That was the beauty of the hospice work I used to do--- it put you in that place on a very regular basis.
    We have just come home from a fabulous vacation where an excess of sun, food and good times were part of the plan. I am thankful that we were able to take our kids on such an amazing holiday. I am also grateful to Arturo and his lovely mother for showing my daughters another side of his country that I am sure that they will never forget.

Holiday

    When things change drastically around here, my younger daughter regresses. I find it sweet at times and annoying at other times. We' re getting ready to go on vacation and so she is sleeping in her sister's bed, carrying her blankie around (cleverly disguised as a pillow) and walking here and there with her long-time stuffed monkey-pal. All of that is fine but it's the baby talk that I find the most objectionable. I am so used to having this smart, saucy and bright almost 9 year old around that when the 3 year old shows up, I am flummoxed. When you add to it the stress of packing everything for everyone, ensuring all our critters are cared for (50 chickens and 2 of just about everything else) and that home and business will be taken care of while we are away and it seems totally over the top. My older daughter enjoys seeing her little sister like this--- it makes her laugh. Anyway, today that is what I am going to do. Just smile, chuckle, maybe even laugh....because tomorrow I will be on the beach in Mexico with 3 of my most favourite people and what could be better than that?

Anti-Bullying Day

     Every year we take out our pink anti-bullying T-shirts and put them on. I like the T-shirts. They assert "Every day bullies depend on good people not doing the right thing." That's right--- bullies can't do what they do if everyone is looking around and making sure that everyone else is alright. It's about social responsibility. And as the T-shirts say: "Your culture---your school. Keep it safe." It's about everyone taking responsibility and keeping each other safe and speaking up when it isn't.
     We've had our share of bullying. My additional needs daughter who is 12, finds comments about her disabilities especially cutting. Being called a retard is hardly a devastating remark, unless like her, you know that you don't know all you could and then it seems cruel. It's not her fault after all.  She is trying to learn to ignore the negative comments, the "shut-up"s & "the mind your own business" type remarks that are frequent in her day. Her assessment as having Non-Verbal Learning Disorder means she asks a lot of questions, makes many poorly timed remarks, repeats things at times, and reminds everyone as to what the rules are, as she knows them. Kids find these things annoying while adults are more forgiving and some find her wonderful company, easy to talk to and polite.
     What I would like to see on Anti-Bullying Day is role-playing or skits that spell out dramatically how even small put-downs and insults can be hurtful. Most everyone in my daughter's class identified themselves as having been bullied at one time or another. If that's the case, then how come there is still so much of it going on?