Nonverbal

     Nonverbal Learning Disorder has to be the most misunderstood, if not the least well named learning disability in the world. We can't even decide on a consistent abbreviation; is it NLD or NVLD? Very few people are aware of it. I have had folks in helping positions express sadness to hear that our daughter is nonverbal when that is exactly what she is not. Kids with this disorder are generally very verbal at an early age and our daughter was no exception.
     NLD is a neurologically based learning disorder which involves malfunctioning in the right hemisphere of the brain possibly due to white matter dysfunction. That means that all learning and understanding is affected. Causes can be head injury, radiation or removal of brain tissue from the right side of the brain among other things. It results in a number of issues academically, socially and spatially. It is named after the type of communication that is difficult for people with this disorder to comprehend but it encompasses so many other issues. The most significant for our daughter right now is a lack of social success. Our daughter is sweet and funny, kind and quirky, eager to please, happy to help, naive, trusting and usually alone, especially at lunch when over 1000 other students are milling about. You would think that there might be one other person there that she could connect with on a regular basis. Fortunately she has a few friends outside of school.
     NLD has become more well known as time passes. There were folks out there passionate that the world understand this syndrome. The late Sue Thompson wrote the go-to reference for NLD, The Source for Nonverbal Learning Disorders and the late Dr. B.P. Rourke had been doing research in this area for years. We are blessed that our daughter is alive in a time when the world is much kinder to differently-abled folks. It is not always so however as many kids having lonely lunches will tell you.

Pastor

     Our older daughter is a member of a great church youth group in our community; it is an oasis of safety and friendship in a world that often feels unkind and impatient. She came upon it by way of a classmate who was in the same school program. Our daughter has been part of this group for almost two years and the social highlights of her year are often associated with it. Part of the reason that it is so supportive is the dedication of the Youth Pastor who runs it. He is friendly, committed and cool; always approachable, he has time and attention for every individual there.
     It is not easy for a person who does not understand non-verbal communication and social cues to come upon a group that is welcoming. While most of us were awkward at some point in our youth, there is often not much compassion for someone who tends to interrupt, talks too much or doesn't always understand all that is going on around them. Our daughter feels like these young people are friends; in this group she find acceptance, appreciation and community. That is huge for her.
     We have attended many services at this church. It's accessible music, casual atmosphere and friendliness (not to mention the endless coffee) have made it easy for both our daughters to enjoy the services there. The Lead, Associate and Youth Pastors have made all of us feel welcome. The Associate Pastor reached out to us and  prayed for us when our daughter's seizures were particularly bad. He was the first person that I am aware of that our daughter ever volunteered information to about how long she had been seizure-free. I told him that that was a measure of how happy she was there and how much she appreciated him, his wife and their prayers. Today we learnt of his untimely death and so we are sad. We will never forget his kindness, wisdom and humility. We'll miss you Pastor Ken!

Twelve Things I Know About Aging That I Wish I Didn't

1. Back pain: Who knew? The simplest chore can now render you useless for the rest of the week!
2. Insomnia: Some nights you sleep, some nights you don't. You're always kept guessing. Who said life would be dull?
3. Whiskers: This is something that I heard about. Hair grows out of places that it shouldn't. As if getting old isn't bad enough!
4. Skin: Spots that are not acne appear on your skin for no reason. I have no idea why.
5. Gravity: I am not kidding. Everything but I mean everything falls or falls off. Don't ask.
6. Appetite: Old people don't need to eat much because they don't do much. And if you do eat a lot, get ready for #2. On this list I mean.
7. Gas: Another one of those things that I heard about. Really!
8. Hearing: I will never experience silence again. There is a sound in my head that no one can do anything about---tinnitus. Look it up.
9. Teeth: They get long, they break off, they let you down. I mean it.
10. Vision: The top of your glasses and the bottom of your glasses do different things.That's all there is to it.
11. Energy: It is so much easier not to do things than to do them and even if you wanted to, you don't have it in you...enough said.
12. Lists: You can no longer remember anything much less the name of the director of "Stand By Me". (I know it's Rob Reiner. I googled it.) You must make lists for everything. Everything!

Lost

 

     I am always losing things. Sometimes they are just misplaced; other times they are out and out gone. Sometimes they are just a favourite pen, a comfortable sweater, other times, the terrible times, they are important: a passport, or another government document or worse, your grandmother's pearl ring. Like any repetitive behaviour there is a definite pattern associated with these crazy-making times: noticing the loss, thinking about it, looking, brooding, looking some more, deciding you are a moron, focused looking, retracing your steps mentally and physically, giving up, more looking. If ever I wonder about my mental health, these are the times: the waste of time, my apparent inability to learn anything from the last time this happened, did I mention the waste of time....
     This past one was a doozy! I "misplaced" my lottery ticket to the sixty million dollar draw this weekend. It didn't matter that I would have an easier time winning the Nobel Prize for Literature while simultaneously winning a gold medal for Canada in the Artistic Gymnastics category than actually winning the grand prize; lost it was and look I must. Unfortunately this incident fell squarely on a week when sleep eluded me as well. There are some things more humiliating than wandering around your house in the dead of night casting the beam of a rechargeable flashlight everywhere you can think of, but I am not sure what they are right now. Let's just say that I am too tired to think about it because of the aforementioned moonlight rendezvous with stupidity. The only satisfaction I got was hearing that no one actually won this week's first prize which means that I still have a week to lose this week's ticket too! 

Many

     When you first have children your life opens up to a world of possibilities: new people, new activities, new places, new friends; so much is new and a family first. And when you have children with extraordinary needs, your world becomes even bigger and also much smaller. Dreams are rearranged, goals are altered sometimes hopes are dashed but still as parents, we wish and pray and even hope for simpler futures, for baby steps with big outcomes. At our house we count up days that are seizure-free, nights of good sleep, outings that are special because of the presence of friends or family. For some families these things are not yet theirs: seizures are ongoing, sleep is hard won and outings are few because of a lack of understanding and acceptance in the world outside. And some families are dealing with much bigger daily issues: heart surgeries, feeding tubes, wheelchairs and endless hospital stays. The list of trials many families face goes on and on....
     But there is help in many cases: respite for parents, educational assistants at school, programs and facilities, teachers, doctors, helpers, coaches and volunteers. We have come across some very special people as a result of our daughter's different abilities, more than we could possibly mention or even count. And this is how our world is made big, by the people who help. As our daughter takes steps toward adulthood and independence, she takes those steps with the support of so many helping hands. Many helping hands do not mean that she won't fall--- she almost certainly will. Many helping hands mean that she will have a great deal of help to get back up and keep moving forward.

Friend

     Want to know something? Things are going well for our older daughter.... She is almost four months past her last major seizure, a real bad one which landed us in emergency and it is over two months since her last seizure--- period. This is huge for us and means that despite my carpenter husband`s recent shop accident, we are all breathing a little easier. Our daughter is volunteering at two different thrift stores and at her church`s Sunday school this summer. She is going to her second camp of the summer: a sleep-over camp for kids with epilepsy and she is really looking forward to it. But finally the most important and life-changing aspect of her life is the presence of friendship. Since joining Special Olympics and Challenger Baseball our daughter has made a few friends and this has made all the difference in the world. There is a spring in her step and a sparkle in her eyes that was absent for some time. Having a guy friend and a girl pal to go to the movies with, to swim with, or to just hang out with has made an incredible difference in the way that our daughter moves through life. A mother I know whose daughter struggles with depression said to me ``A mother is only as happy as her saddest child.`` I know this to be true. I also know that our children`s happiness is the most important aspect of life barring their health. When these two factors walk hand in hand in a positive direction then the world can be a beautiful place to be.

Teacher

Dear Teacher,
     As our youngest leaves elementary school it is hard to put into words how much we have appreciated you and your teaching over the years. You have taught but you have also challenged, enriched, laughed with and listened to our kids. And you stretched the boundaries of the classroom with a school garden and various field trips. Whether they were learning to plant, weed and harvest vegetables at God's Little Acre, seeing our garbage languish at the landfill, being taught to slack-line on a rope, knowing where every country in the world was by being given map colouring as homework, or having their good old-fashioned punctuation corrected, they took it all in.
     And so both of our daughters have had the good fortune to have you as a teacher. It was probably one of the few years that our older daughter could remember liking elementary school. Our younger daughter has grow into a curious, independent and knowledgeable person in part because of her time in your classroom. Every day they could count on being heard and being treated with respect by a man who never yelled and often played his guitar. Our girls are better people for having known you and so are we. You have our thanks....