Whatever Works

     We went to church this morning as we do most Sundays and had a particularly wonderful guest preacher. We Anglicans don't usually use the term preacher but in this case, the term is totally apropos because this guy spoke without notes, from the heart and my heart heard him loud and clear. He talked about those tiny, rare moments when we  hear God's voice whispering in our ear and the impact of that experience. One of the reasons I go to church, besides giving my children a complete education, body, mind and soul, is because sometimes when I have those moments, I am at church.
     This afternoon I had my girls and their visiting cousins do a scavenger hunt. The list of things to be scavenged (is that really a verb?) included mostly natural items: worms, flowers, moss, leaves, insects and mushrooms. The two older girls were having trouble finding a mushroom outside so they thought they would grab a mushroom from the fridge. I thought that that showed a great amount of initiative on their part; they were thinking outside the box, well actually, inside the icebox, as it used to be called.
     I am writing this while cooking dinner...these pieces usually have to happen in stolen moments between fulfilling some of the responsibilities of my life: cooking, cleaning, cutting the grass, picking up building supplies, office paperwork, bill paying, driving someone somewhere, feeding one of the hungry mouths at our home (there are 81 of them but 60 of them are chickens), and gathering eggs.
     Sometimes we have to make it work the best we can, in a way that works for us. Most of my friends don't attend church. That doesn't mean that they are not spiritual of course but Sundays at church work for us. It's not for everybody. Thinking outside of the box is hard for some of us--- for some of us, it comes naturally. Writing this blog works for me in a big way. I think my sanity was kept safe from the black dog this winter by this small,secret writing which of course is not secret; the whole wide world can see, read and comment on it, but most don't.
     What works for you? For me reading, walking, gardening, writing, praying--- these are at the top of my list. What about you?

Time

     Have you ever noticed that it is always Thursday?  Of course it really isn't always Thursday but by the time I have a minute to figure out what day of the week it is, it is Thursday again. Or is it just me?       
    Being an older parent means grappling with apparent memory loss at the same time that you are dealing with things like PAC meetings, play dates and field trips. You are getting a senior's discount at a the local Salvation Army while you are ordering Lego on line for your daughter at Indigo.com. You are tired and ready for bed at the same time that your children go to bed.
    My husband likes to remind people that "life is like a roll of toilet paper, the closer you get to the end, the faster it goes". Okay, I get that but why is it always Thursday?

Compromise

    We have been talking about relationships at our house a great deal lately. When one of my brothers-in-law married into my family he said his father told him that marriage was about "sacrifice and compromise". He meant it as a joke but it is not a joke. That's exactly what it is about.
    My husband and I were told that we would not be able to have children. At the age of 36, I was told that we had "unexplained infertility" and would never naturally conceive. I did not want to conceive any other way and after almost 6 years and several miscarriages, my eldest daughter was born. She was the answer to prayer. When she was 2, she decided she must have a baby sister and although I explained to her that it would be impossible, she prayed every night and 2 years later and a particularly delicious Indian food meal in honour of my birthday, she had a baby sister whom she named Maya.
    My husband and I decided that he would work very hard and I would be home to care for our children. We eat much ground meat, my car is 17 years old, we rarely take big vacations, my husband works night and day and most everything we have has been previously owned. We don't mind. It works for us and I can be available to my children when they need me.
    My younger daughter recently told me that she is not going to get married because she doesn't want to have to cook food for everyone everyday. At this time in her life (she is only 9), she has decided that she will not compromise her freedom for daily food preparation. We'll see!
     We all make sacrifices and compromises based on what we want and need in our lives. My kids need two parents, a solid roof over their heads, at least 3 meals a day and someone at the other end of the line when they call....I'm here!

Remembering

     When you have a learning disabled child you often think about how that came to be. It's not worth thinking about because you can never know the answer --- you can guess, even in an educated way, but you're still guessing.
     My daughter has certain skills in terms of memory, observation and other skills that are mostly verbally expressed. I think that she may have got some of them from me or maybe from her dad who has a prodigious memory, mostly for poetry.
     Her sister tried to sell me an Indigo gift card for five dollars...she was looking for cash and thought she had a small sum left on it from a few weeks ago. I asked my additional needs daughter what she thought the balance on her sister's card was and she said fifty three cents. I called up the 1-800 number to find out the balance --- guess what, it was fifty three cents. How can she do that?
     My eldest daughter can also recite "In Flanders Fields" by Lieutenant Colonel John McCrae and has remembered it for every Remembrance Day since I can remember, since she was in Grade 1 anyway. She only ever recites it when I ask --- two or three times a year but it's always there. She also remembers where she saw things; very handy for finding keys or a misplaced earring.
     I can remember phone numbers and that's all. I know a lot of them, but they're all I know. My husband remembers poetry: long Robert Service poems or beautiful Robert Frost poetry. Neither one of us can find our keys to save our lives!
     We will never know how or why our gorgeous, chatty, curly-headed girl came to be the way that she is...we don't care. We wouldn't change a thing --- she is our remembering, noticing, poetry-reciting girl and we love her.

Aloha

    This blog started as a way to connect parents with special needs children; a conduit for support, education and information. I am not sure how many parents with additional needs children saw this blog. I'm not sure how many parents read this blog. What I know for sure is that I got a great deal from writing these pieces; some days they helped me keep my sanity, it seemed.
    The school year is almost over and my special needs child is about to graduate from elementary school to high school. Grade seven is almost done and I don't feel as though I supported anyone, educated anyone or informed anyone, except myself. Which is fine. As I stated before, I receive a huge amount of personal satisfaction from writing this blog.
    My daughter is excited about "grad", she bought a dress and has even picked out her earrings. With the job action in place, many schools have cancelled their grad, as it is considered an extra or after school activity. I hope that my daughter's event does take place and that if it does, it lives up to her expectations. She has not always had an easy time of it at elementary school, but we love the place all the same and my younger daughter is enjoying her time there.
    What started as a way to help others has helped me. Sometimes when we endeavour to teach others, we are taught ourselves. The great gift of hospice work is that we want to assist the grievers but the grievers end up enriching our lives; we want to walk the road of the dying with them and they end up claiming a place in our hearts.
   I called this post "aloha" because apparently it can mean "hello" and also"good-bye" depending on the context, as well as having a host of other meanings. As Sheldon on The Big Bang Theory points out, it is illogical to say that when one door closes another one opens except that sometimes, that is the case. A door that closed in my life opened up the door of this blog; a door I have come to enjoy and benefit from in a big way.
My learning disabled daughter says that I must stop blogging about her once she gets to high school. We shall see. I might have something to say about that. Aloha!

Reading

    Reading is one of the secret joys of my life. I cannot imagine my life without books. Ever since I can remember, I have read everything I could get my hands on, from the cereal box on my kitchen table to the complete Childcraft series from the World Book encyclopedia we grew up with at home. I can vividly recall waiting for my mother to leave my bedroom at night so that I could grab my flashlight and read under the covers until I was too tired to think. Even now, I cannot sleep until I have read at least a page or two of my current book. I am too busy to ever read during the day but my night-time ritual is a must. My idea of a perfect vacation is to lay in the sun and read all day long. That's what I did on our last trip to Mexico and I read a book a day. I love to read fiction. Biographies used to be a favourite. I like a good mystery but I am not interested in non-fiction, romance, horror or some fantasy novels. J.D. Salinger is one of my favourite authours--- I credit him with helping me to get through my teenage years (along with Jesus & Cat Stevens).
    I cannot imagine not being able to read. One of our night-time rituals when my daughters were babies and then toddlers and older was to read two or three books before bed. It was a cozy way to ease into sleep for them; a nightly occurrence that they seemed to love. My girls have come late to reading themselves and for a while I despaired because it seemed reading would not be an interest for either of them. I am thrilled now to note that they are both reading their own books in their own beds before going to sleep. Sometimes if they wake up early, they read then too. Children's books are so great now; from Junie B. Jones to Amy Hodgepodge, there is always something funny or inspirational to read.
    I love that they like to do something that I have loved doing my whole life. I found this on my friend & authour Navjot Kaur's blog and I want to share it:

Literacy is, finally, the road to human progress and the means through which every man, woman and child can realize his or her full potential.”

- By Kofi Annan (Ghanaian diplomat, seventh secretary-general of the United Nations, 2001 Nobel Peace Prize.)

Yes!

Tears

     When your child is sad, you are sad. No matter how much you understand the cause of their disappointment; no matter how much you know your child must endure pain to survive in this world, you cannot help but suffer with them. And if their pain is due to social rejection, bullying or just the petty meanness of some of their peers, it is heartbreaking for them and so, of course, for you.
     This is especially true when your child is learning disabled or has additional needs because this stuff happens all the time. I cannot count the number of times that my daughter has called upstairs after getting off the bus, " Mum, I had a terrible day!" It is so hard to hear that, especially day after day. We talk and use these experiences to learn and grow socially. And I must admit that it used to happen much more than it has this year. But my daughter feels it more deeply now because the kids that are saying these things are 12 years old or more (if they are on the bus) and the things they say are more hurtful.
     In the brilliant film, "The Boy Inside" by Marianne Kaplan, Marianne goes to a autism convention and meets a mother with 2 autistic sons. In a scene that is brutally hard to watch, the mother implores others to reject her but not to reject her children, please. I know why she says that. Because it cuts deeply. As a 54 year old woman, the greatest pain that I have felt in my life has been because of my children and the pain that they have experienced. I'm sure that is true for many parents and their kids.
     And so there are tears. There will be so many more. But right now, it's today's tears that stain tonight's pillow. Sleep tight my little loves....

Bully

    When someone uses name calling, it has lasting repercussions. No matter how quickly an apology is made, the words never go away. We can hear them inside our heads for years to come. If the person who said them is a family member, it is especially hard to forget even if we do forgive.Those words can become part of a tape that is played over and over in our minds and is difficult to erase because it becomes part of who we are.
   We all know that we should describe the behaviour, not the person, especially when we are angry or frustrated. Some of us know that the best way to talk about what we are feeling is to describe those feelings i.e."I feel.... because...." In the heat of anger sometimes those tools are neglected or even forgotten. None of us are perfect.
    Calling a  typical person "a retard" just makes the person who said it look bad. When someone calls a person with special needs "a retard" that person becomes a bully; someone for whom the feelings and dignity of the other person have no value. When I think about that, I feel angry because the person who calls an additional needs child "a retard" is behaving in a cruel and thoughtless manner that goes beyond the mere utterance of the word. They should look in the mirror and decide what and who they are. Are they a bully or are they not? On second thought, some names really fit, don't they?