12.14.2012

     We are at home here today having a lovely, easy weekend: making squares, wrapping teacher gifts, signing cards and finding lollipops for classmates, enjoying the snow and feeling the love of family, the relaxation of not having to go anywhere.
     Meanwhile parents, friends, classmates and staff are dealing with the horror and loss of yesterday; trying to make sense of senseless acts of violence perpetrated in what should be the safest place in the world--- an elementary school.
     We are hugging our girls and realizing once again, how small our problems are. A thread of sadness will weave its way through all our comings and goings this year, thinking of the folks whose loved ones are no more....

SUDEP

     I just left my older daughter at a church youth group for the first time. Her cousin wasn't there yet, they were having a movie night and most of the group leaders were busily preparing for the evening's activities. It seemed as though there were 100 kids there. I pressed my epilepsy information, contact numbers, my daughter's health number and a brief explanation of my daughter's learning disorder into the youth pastor's hand; he jammed it into his suit jacket pocket and assured me that he had First Aid training. We hung around until the grade 8 girl group leaders showed up. They were busy and another lovely young woman introduced herself to us and chatted with us until we left, leaving my daughter, in her capable hands. I felt terrible leaving her, stressed and nervous in a situation where only one person knew anything about her. And as we drove away, I berated myself for leaving her, for not staying longer, for taking her there in the first place. And then we saw an ambulance head in the direction of the church....I could barely stand it.
     Later, after she had arrived home, safe and smiling, I thought how silly my fears had been. There she was; she had had a good time, and had cake as well. And that is what usually happens isn't it? You worry, you imagine the worst and it does not happen. And God willing, it never will.
     I have been reading about SUDEP, Sudden Unexplained Death in Epilepsy, which apparently accounts for the death of 1 in every 100 of people with severe seizure disorders. Even now, typing those words on the keyboard fills me with dread, as if the very fact of writing them, gives life to this collection of letters and picks a fight with them, to be fought later.
     I know that I am a glass-half-empty kind of person--- there is no denying that. I also know that keeping positive thoughts, positive energy around you helps you and everyone around you. But I also know that knowledge is power and that power means knowing everything I can to help my child live the safest, healthiest, happiest life possible. And so I read, I investigate and I learn. The next time that she heads out the door, I remember what I know and I smile and I pray and I let go.

I Love You

     Two of our friends had a family member die this week. Although the deaths were expected, it seems that there is always the shock of the end. There is no good time to die, at least for the people left behind. These two individuals had cancer and so there was probably some degree of pain and suffering. For some people it is a relief that their loved one no longer suffers. My friend said though that he was disappointed not to be able to have one last chance to talk. His sibling had been given so much morphine that it was impossible to connect.  My other friend hadn't been able to get back in time to see his relative before he died.
     I know that when someone dies I am reminded of how important it is to keep up to date with my "I love yous". That was the gift of working at hospice; I was reminded daily. Now my work is primarily as a mother, wife, farmer and secretary---so death is not as prevalent. In the 90's television show "Early Edition" (that we have discovered on Netflix) the main character Gary, receives tomorrow's newspaper today and so he works to undo the tragedies he reads about in the paper and thus change the news. Isn't that what saying "I love you" as often and as meaningfully as possible to the important people in your life all about? It can change people's lives: for the better when it's said, and meant and not so when it's never spoken, never felt.
     The holiday season is pressing down on us and so it's supposed be a hard time to be sad. Of course, many people are down-hearted at this time of year, for so many different reasons. I think when you have small children you cannot help but feel the infectious joy that this time of year brings to some kids. If you have faith and the story of Christmas resonates for you then you too are touched by the wonder of this special time. Many people though are tired or sick or broke or missing someone and so this time of year is especially hard.
     If  you are able to reach out, by whatever means possible, I say do it. It will make a difference. Whether it's connecting with an estranged family member or donating a few extra cans of tuna to the Food Bank; a box of chocolates for your mail carrier or a note to a far-away friend; some warm socks tucked in the coat drive for the homeless or even a smile for a stranger on the street, big or small it all makes a difference. And don't forget those "I love yous"--- even when you pass by the mirror. We could all use a little more love, couldn't we?

Understanding

     The other day while we were participants at a school Christmas craft fair, my daughter had another seizure. My sister and her daughter were sharing a table with us and I guess my sister had not witnessed one of my daughter's seizures for a few years. After the event was over and we were trying to gather ourselves together again my sister said to me "How do you let her (meaning my daughter) out of the house?" Tears welled up in my eyes and I responded "It's very hard...." At that moment, for that minute, I felt understood. It affected me profoundly.
     We have never felt sorry for ourselves or wondered why this burden was ours to bear. I have of course, prayed that my daughter would cease to have seizures and be able to live a healthy and safe life. Our family has tried to make the best of our daughter's life with seizures: telling folks about her situation whenever possible and appropriate, participating in Purple Day, an epilepsy-awareness event and just generally being open and honest about our daughter's health--- educating others.
     What has been tough recently is the number of seizures (7 since July) the length of each of them (easily 10 minutes) and the changes in them (complex partial turning into tonic clonic) not to mention that she is now attending a huge high school with 2000 other kids. The stress of all these factors is at times overwhelming, not only for us of course, but especially for our daughter.
      As a parent your primary focus is keeping your children safe: fed, clothed, healthy and happy but first of all, safe. How do you do that when a temporarily-incapacitating neurological event could occur at any minute? Well, you rely on the kindness of strangers or near-strangers; you depend on the vigilance of the folks who are with her at school: the bus driver, the teachers, the SEAs, her friends, acquaintances and classmates. And the rest of the time you watch her very, very closely, day and night and you pray.
 

New Start

     Well, we have lived through six recent seizures, three of them in nine days, the beginning of high school, the start of antiepileptic medication, a new way of eating and the many social interactions that occur in the life of a girl in grade eight. Also, our older daughter thinks that it will be okay if I blog about her. That is a giant leap of faith for her and for me too.....
     I notice that both our girls have grown up since the summer.  They are talking to me about the people they know and others they are meeting; the two of them have a lot to say about how those different relationships are working or not working for them. Fortunately, they are both able communicators.
     Our younger daughter is getting a taste of leadership in grade four. She is helping with recycling, kindergarten lunch monitoring, composting and other activities. She relishes the opportunity to help and is especially enjoying meeting the kindergartners and making connections with them.
     Their older brother who is a police officer just lost his canine partner to cancer. It is a terrible loss for him and one that also means leaving the canine unit and now working in a new department of the police force.
     So new starts occur when something else stops; one chapter ends and another chapter begins. We are almost at the end of this year... And so it feels right to me to start again. Especially when I notice that I started this blog almost exactly a year ago. Now I am different, my family members are changed and life goes on...and on and on.
                                      

Last Post

     Okay, so I lied...this is my last post. Our daughter used to have a seizure disorder. Now we know that she has epilepsy. They are the same thing except one was temporary, something that could be outgrown; the other, part of her life from now on.
     In case you don't know, if you see someone having a seizure you should make sure they are safe, put them in recovery position (on their side) and then time it and stay with them. If their seizure lasts for more than 5 minutes or they have 2 seizures in a row, then call 911.
     That's all...

First Day

     We stood there trying to find our way through the crowd; bodies pushed and moved, I felt trapped and had to keep going. The noise level was incredible, I couldn't speak without yelling and when a gap was found we stopped. We breathed. I kept consciously breathing but meanwhile my stomach was rising in my body and I thought that I was going to be sick. I tried to control my thoughts, my words, my face; I didn't want her to know what I was feeling. I had to be here with her--- she could not be alone for fear of another seizure. What I was experiencing was irrelevant; I was here for her. I didn't want to colour her view of the day--- the first day of high school.

(This is my last post. My daughter has asked me not to write about her now that she is in high school. I'm not sure how I am going to manage that, but here goes....)

Letter

     Your daughter has been spending time with us fairly regularly over the course of the summer. She was in our daughter's class at school and so they got to know each other over the school year. You and I don't know each other all that well but I wanted you to know what a nice person your daughter is and how much we enjoy her company. She is unfailingly kind to both of our daughters and is friendly and good-natured with everyone she encounters at our house. Her manners are impeccable--- she thanks us for everything. We couldn't ask for a better guest.
     The reason I am telling you this is that she acts like we hope our daughter acts when she is at your house. And I thought that you would like to know. We are so used to our own children and their behaviours at home. When they get out into the world as company at other folks' homes, especially when we are not there, we hope that they are doing their best. Your daughter is--- I think that you would be proud.
     So thank you for allowing her to share time with us. I know how hard it is sometimes to let our children go. They are excited to go to parties and sleep-overs at each others homes...it's fun for them but it can be stressful for us, particularly if our child has extraordinary needs or a health concern of any type. The friendship that has formed between them is a first for our daughter; a relationship she made and is maintaining, all on her own. This makes it especially important for all of us. Our whole family is enjoying this friendship and what it is adding to all of our lives. We hope that you are too. Because of who our daughter is, we take no relationships for granted and this one is no exception. Sending our appreciation....


 

Groups

    What happens in a gathering of people when everyone doesn't get along? Whenever groups of people get together on a regular basis, these groups go through phases which contribute to the life of the team and keep it strong and viable or tear it apart. This is all part of something called group dynamics which is a fascinating look at systems and how they work or don't.
     When I did grief groups with hospice we talked about these phases which were based on the work of Bruce Tuckman who called them: Forming, Storming, Norming, Performing and Re-forming. The point of this is that every group whether it be a family, an office staff, a girl's group or a PAC go through these stages at various times depending on the life-time of the group and the goals the group wishes to accomplish.
     Sometimes if we are people who dislike confrontation, particularly outside of our family, we feel uncomfortable with the storming stage which is when conflict arises and is dealt with constructively by the group. If this positive conflict resolution doesn't occur then the group can become stuck at this stage and eventually become disabled and fall apart. If the team gets through this however and moves on to the norming stage, the group can become very effective at achieving its desired goal.
      We all have times when we become less than patient with the folks around us. I know I do. The trick is to remember why we are there and what we are trying to accomplish. Its easy to drop out when the going gets tough; sometimes we are not up for the fight. Anything worthwhile is worth fighting for and if we truly believe in the value of our perceived goal, then we must be ready to step up.
     That sounds like a lot of cliches and it is---- a whole pile of them. The basic truth behind them though is solid: Carpe momentum. And then hold on. My goal now is to try and be more present; to seize those teachable moments and to try and make them valuable. Even if it means a little conflict here and there or some uncomfortable feelings. It'll be worth it--- I'm sure of it.

FNN

     FNN doesn't spell fun but it should. Most Friday evenings since and including the last day of school, most of the girls in our eldest daughter's grade 6-7 class have been getting together to hang out. That is not to say that they haven't been busy: snacking, chatting, texting, playing volleyball, eating pizza, running through the sprinkler, listening to music, laughing, sleeping over, eating cupcakes, playing with water balloons, riding bikes, visiting the neighbours, did I mention snacking? Girls can do a lot in 5 hours.
     One of the things that I learnt from doing a group with grieving teens when I worked with a hospice is that young people are just that: people. They are just like adults except slightly smaller (although not always), less old and with usually less life experience (again, not always). Back then doing a group with teens was not my first choice; I was a little afraid of them. I did do the group though and loved it. They were refreshingly honest and down-to-earth, funny and remarkably knowledgeable; just like a lot of other people I know.
     Don't expect me to be one of those parents who would rather be their child's friend than their parent. I know that my most important job is being my girls' mother...who else would I be? Their company is some of the best ever and I love to be with them--- whatever they are doing. I also know that we need time apart now and then to really appreciate one another. At the end of the day, we all need time together, time apart, time alone and time with others.
     As far as time with others is concerned, the girls who come to our Friday Night Nine evenings are some of the smartest, sweetest and most fun girls ever. We like their company and love sharing their time. These get-togethers have been one of the highlights of the summer for our family--- a nice bunch of kids having a visit and a bite to eat together....What could be better than that?

Girl Friends Part 2

     One of the most remarkable things about our daughter's last year in elementary school was the amazingly supportive social environment provided by the classroom teacher and our daughter's SEA. Her teacher was a young, hip gentleman with a passion for gardening and immense knowledge and skill. Her Special Education Assistant was a tiny, upbeat woman with tons of energy and a smile as big as the room. It is my impression that they did read, at my urging, the superlative book about Non-Verbal Learning Disorder by Sue Thompson called The Source for Non-Verbal Learning Disorder and realized how difficult social interactions were for our child.
     It was obvious to me that our daughter's 7th Grade teacher worked to provide a respectful and open atmosphere in his classroom. He was aware of our daughter and her likes and dislikes and checked in with her regularly without taking anything away from the rest of the class.  As an example, he altered the lighting of a class dance so that it would not affect her and cause a seizure. He was endlessly patient with her need to remove herself from a noisy classroom or her desire to move her desk around.
     It became clear that our daughter's SEA worked every day not only to assure our daughter's academic progress but her social success as well. For a girl like our daughter, on the cusp of entry into high school, this was phenomenal. For example, her SEA used her own lunch breaks to initiate impromptu basketball games so our daughter could recruit the girls in her class to play and thus work on these social connections. She initiated and assisted in the making of a personal quilt as a memento of our daughter's year. And I know that our daughter spent less time in the school counsellor's office this year than any other year in elementary school.
     You cannot put a value on folks like that--- they are the difference between an okay school year and a phenomenal school year. I did write the Assistant School Superintendent to tell him about these wonderful people. In a year of job action and budgetary restraint, they were amazing. Luckily our daughter has had great teachers and amazing SEA's throughout her time at our little country school. The difference this year was that our daughter was poised to utilize this perfect blend of student/SEA/teacher/school and create her own recipe for social success.
    I am sure there will be tough times ahead...high school will be daunting. And no one with my daughter's learning differences will be an expert in the field of social relationships. The path ahead is an uphill one to be sure.  However the stellar individuals who made our daughter's year outstanding have paved the way for more friendships and a lifetime of learning which will be a benefit to our whole family. As I wrote to the Assistant Superintendent: "I wish to pass this along to you so that you might let these fine people know what a difference they are making in a young girl's life." Enough said.

Girl Friends Part 1

     I was cleaning up our daughter's room after a recent birthday and found an envelope with the words "To a good friend" printed on it. This seems like a small thing I suppose except that our daughter has never been referred to in that way until very recently.
     She has Non-Verbal Learning Disorder which has a multitude of social deficiencies attached to it. Suffice it to say, being considered a friend has been the most difficult task on our daughter's list. On the NLD website there was a question there that asked "How do you know if your child has NLD or ASD?" The answer read something like if your child has no friends and she doesn't care, then she has ASD. If she has no friends and she cares, then she has NLD. If that seems very over-simplified, it is. There are a myriad of differences, challenges, skills and attributes that differentiate Autism Spectrum Disorders from Non-Verbal Learning Disorder. The point here is that our daughter felt keenly the absence of quality friendship in her life. Don't get me wrong--- she had friends, but more as a result of what they did as opposed to what she able to contribute to a relationship.
     Play dates were scheduled but the girls usually ended up playing with our other daughter who is four years younger. Our daughters play well with each other, but I suspect that has occurred as a result of our younger daughter's patience and knowledge of her older sister's idiosyncrasies. She made it work because otherwise they didn't play. But when our older daughter was almost thirteen years old, the game changed. Talk or conversation became the connecting activity and if there is one thing our daughter can do, it's talk. From the moment she learnt to say "hi", the world was a place to converse. Walking came late, crawling, not at all, but talking was immediate and constant.
     I am hugely gratified to witness my child's growing ability to meet others, foster friendships and expand her skills for getting along in the world. These are no small feat for the most typical and popular of young people. "If you want to have a friend, be a friend." as my husband is fond of repeating. In the case of our daughter, it's all that and much, much more.

Thankful

     Sometimes you or someone you love gets a surprise, a treat so unexpected that you are caught off guard. It is not that the generosity is out-of-character but that the gesture is large and the gift, exceptional. Exceptional because it is the perfect present for the person receiving it. And it is not that the gift is costly necessarily; it is the expression of love and confidence in the one being gifted, that tells the tale.
     Our eldest daughter is not a complicated girl. She loves her family and friends, Justin Bieber and money. She also loves the electronics which connect her with the music, the images and the news that are important to her. She starts high school soon and having the latest technology at her disposal will help her immeasurably. Her best chance for success in the future is going to be the skills and knowledge that she acquires in the next 5 to 6 years. So to be gifted with the latest Apple technology is a huge boost to her academic success as well as her connectedness to the world. 
     Written output has always been an issue for our daughter. And unlike many kids with ASD, she is no computer whizz. Typing is not coming easily and one of the new dictation applications may be just the thing to help her accomplish the work she will have to do in order to finish high school.
     So she is grateful for her new iPad. We are thankful for it as well. It is not a gift that we were planning to give her on her 13th birthday--- it was not possible at this time. But someone kind and caring, generous and thoughtful found a way to make it happen....and for that we say thank you. 

Grandma

     I know that I am showing my age here, but when I was young, mother-in-law jokes were the thing. There was the ever popular "Take my mother-in-law---please!" I am sufficiently old now that I don't know what is popular and what isn't except as it pertains to the world of young girls; Selena Gomez is hot, Miley Cyrus is not.
     I must tell you though about a woman who, regardless of whose mother-in-law she was, would never inspire those kinds of jokes. My husband's mother is a quiet reader of books, a lover of children--- she gave birth to ten, and a woman of almost 90 years, generous and goodhearted. That is not to say that she is a wall-flower or a push-over. She has very definite views about very definite things; she likes what she likes. Hot dogs must be barbecued, not boiled, milk chocolate is better than dark, Coke is preferable to Pepsi. Her pleasures include children but not dogs necessarily, a day warm and bright but not too hot, food that satisfies, a book about an interesting person but one that is not too long or with too small a print.
     She was born in Pembroke and has had an interesting journey especially because of the aforementioned children and all the different places that they were born: Montreal, Martinique, Oliver, Phoenix, Cottonwood, Cobourg, Toronto. She is well loved by those children and their children and their children's children because of her big heart and kind ways. I know my daughters' summer would not be complete without her.  When I look at her sitting in our yard rocking on the swing, patting and having a word or two with one of our cats, I realize that she is who I want to be when I grow up: a mother respected, accepted and adored by her family; a person for whom they would do anything because she did everything for them. It was not an easy life; money was tight and times were sometimes really tough. One baby died but more came after. The marriage did not survive but she had trained to be a nurse and went to work.
    I know I don't know all there is to know about this lady. I am a relative new-comer to this family having only known her for 20 years or so and only sometimes from a distance as she lives most of the year in Texas. I do know that I treasure the time she has with my daughters. Having left England when babies, my brothers, sisters and I never knew our grandparents very well and I regret that. With her help, my children are learning patience and compassion; in her they see an even-tempered individual whose generosity and mild manner shines in a world of greed and extremes. When I ask them about her, she is funny, caring and fashionable says one daughter. She is nice, friendly and cheerful says the other. Yes I say, yes she is.

Duck

      Lulu, the best duck in the world, was killed a couple of days ago in our driveway. It seems that she settled in there for a snooze and somebody ran her over with their car.  She liked to sleep on hard surfaces; in fact the day I found her she was on a road. I was driving to the grocery store one day when I came across a Muscovy duck in the middle of the road. I pulled over and herded her over to the side of the road and continued on my way. When I was finished shopping, I thought that I would drive back the same way that I came, to make sure that she was still safe. Sure enough, she was back on the road. So I herded her over to the side again and noticed a phone number on the mailbox, indicating that eggs were for sale. I called the number and the woman who answered said that yes it was hers but the duck really didn't like her dog and if I could catch her I could have her. So catch her we did. Our younger daughter promptly named her Lulu.  After we had had her for a couple of weeks, I called Lulu’s previous owner to thank her again and tell her how much we were enjoying her. The woman told me that it was a good thing that I had taken her when I did because a couple of days later, a coyote had come and taken everything in her chicken coop. 

     Lulu was a pretty Muscovy duck and as we had a couple of male ducks on our pond already, she laid a lot of eggs, some of which hatched into the cutest little creatures you’ve ever seen. The important thing to know about baby ducks is that they are impossibly cute; only the most jaded and miserable individual could be immune to their charms. Another thing to know is that there is a reason why ducks lay so many eggs; not all of those little cuties are going to make it to adult duck hood. And the third thing is that, like most of nature, we have very little control over these babies and their mama, so keeping them safe is difficult, if not impossible.  They have grown up now of course and are now very handsome, unusual looking ducks.  Such is the circle of life. And so it is that Lulu is no more. I will miss her terribly. We had some good times together, working our way through the garden, looking for slugs.

     I have had quite a few ducks on our farm over time but none had the charm or the grace under pressure that Lulu had. Every once in a while you meet someone special; someone with rare qualities, someone that makes you feel special, like you have known them your whole life. It could be a person or even a dog or maybe even a duck. For me, Lulu was that duck.

Seizure

     After an almost 2 year break, our eldest daughter has had another seizure. We had hoped and prayed that she had perhaps outgrown them as they had seemed like febrile or fever-related seizures when she was younger. The sense of loss, after such a long hiatus, is overwhelming. We are back to hyper-vigilance, worry and being unable to treat her like a typical 13 year old.  She is not a typical 13 year old but she yearns to be and not having seizures would have been one step closer to her dream, however unlikely.
     Our daughter had her first seizure on Christmas Day when she was a year and a half old. I picked her up to put her in her high chair so we could eat our turkey dinner and she slumped in my arms, lifeless. I put her in the hands of my father and brother-in-law who both had First Aid training and then called 911. The fire truck arrived shortly just as her seizure ended and we rode to the hospital in an ambulance. It was the first of many similar experiences but none of them matched the horror of the first. I had no idea that children could have seizures; I thought that she was dying in my arms. We determined that although atypical, our daughter's seizures usually accompanied illness with a fever, regardless of how slight. We still cling to the hope that this is the cause of all of her seizures and that she will indeed grow out of them.
     Meanwhile we start again and we stay close, we watch her and we make sure someone is with her always: no baths or showers or swimming without supervision, no babysitting for now. We keep her close and we keep her well and we start all over again....
    

Canada Day

     Yesterday my daughters and I headed off for a spontaneous visit to our relative's RV resort in Harrison Hot Springs. We had an opportunity to take part in the parade by riding in their older brother's orange 1947 Chevy pickup truck along with the other kids from the RV resort. The other vehicles in the parade consisted of community groups, Scottish pipers, boat sales, fire trucks, ambulances and more than one candy-bearing Sasquatch. One daughter sat in the back on the hay bales, one in the cab and I walked beside the truck waving a small Canadian flag, while the other kids in the truck sang "Happy Birthday" and waved flags, blew bubbles and waved to the parade crowd. The crowd by normal parade standards was tiny I'm sure, but for the little community we were in it seemed substantial. There were folks from the area waving from their homes but many visitors there as well; tourists from near and far, bundled up against the less than warm July weather smiling, waving and calling out "Happy Canada Day!" What struck me was that no one seemed immune to the pride and excitement of the occasion: a large Muslim family dressed in traditional garb, many families of South Asian descent dressed in colourful kurtas and saris; families of many diverse cultures waving and singing and smiling and calling and loving the day. Loving Canada Day. Loving Canada.

      I was very moved by the whole experience. I am the type of person who gets goosebumps every time I sing O' Canada so I am a sucker for a day like Canada Day. I am not sure if it is because my family immigrated to this country or if it is just wired into my DNA, but I loved this experience. The urge to tear up and cry was so great that I had to smile my biggest smiles, just to keep it in check. The smiles that I received in return were unbelievably beautiful, and different from each other in so many ways. Thank you to everyone who made this experience possible for my family. It was another reason why I am so proud of "our home and native land."

Friends

     Friends are important to life; vital to feeling at peace and one with the world. Friendship is not easy for all of us. Being of a quieter, more solitary type, I find the pursuit of friendships and the time and effort involved in the care and maintenance of them can be arduous. Others like my husband make friends on a daily basis. These relationships are sometimes not long lasting or of a profound nature but the gift of connecting with others is certainly his and others like him.    

     When you are socially awkward like my daughter, friendship can be a mystery. One day someone can be totally warm and welcoming, the next, not so much... The up and down nature of some people's manner and moods is just the beginning of the puzzle for my daughter. She also struggles with the difficulty folks honest-to-a-fault can have getting along in our society. It does not reward the brutal honesty which is a feature of Non-Verbal Learning Disorder.  And then there are things like voice tone, expressions, hand gestures, body language and eye contact which further complicate the issue. 

     Good friends can be amazing. They can make you feel like someone actually gets who you are, accepts who you are, and even likes you after all that. Wow! What could be better than that? We all want to belong, to feel like we are part of something bigger than ourselves. They say that your child’s friends’ parents usually end up being your friends. This seems true to some extent. Most of the mums and dads at my daughters’ school are young enough to be my kids, which is great, because it keeps me young--- as if my kids weren’t keeping me young already!

Graduation

     My almost-a-teenager daughter graduated from elementary school on Friday. For most kids it is not that big a deal: you leave elementary school, then you go to high school; grade 7 is over, grade 8 begins soon. For a girl like my daughter however, this is a much more important transition.
     Elementary school has not been easy for my daughter. She came late to reading; really only in this past year has she felt able to read on her own. Writing is and will probably always be a labourious process for her. She prints like a much younger child, holding the pencil and writing with deliberate and tiring ferocity. Despite her unusual memory, basic math skills such as multiplication elude her with counting still done on fingers and in the air. The answer she produces after this exercise is rarely correct. And then there are the social differences: she does not lie, takes everything at face value, rarely understands non-verbal communication and more. It probably sounds as though she is not ready to leave elementary school--- that may well be. However children are rarely kept back these days as the social ramifications of "failing" a child are thought to outweigh the benefits.
     We had thought that we would do an extra year at elementary school but when it came time, my daughter was ready to move ahead. She physically appears older than her grade six and even some of her grade 7 classmates (at a school population of 92, every division is a split) and in so many ways except scholastically, was appropriate for high school. As it appears now, she will be in a class of about 2 dozen kids who are all at a similar place academically. There we hope she will go through high school at her own pace, learning the basic skills needed to become an independent young adult. She will not be doing calculus, PowerPoint projects on the life cycle of Gypsy moths or writing papers about Shakespeare's plays; rather she will be learning to tell time, how to handle money and what basic hygiene is expected of her.
     One chapter ending, another beginning: all part of the rhythm of life. As one of my daughter's heroes Temple Grandin wrote to her in a short but wise note: "Work hard and you can achieve your dreams." That's what my daughter will be doing. It is all hard work for her but she will do it and we will be right beside her. And there is no place that we would rather be.

Animals

     We are like Noah’s Ark. We have at least two of way too many animals: 2 horses, 3 dogs, 2 cats, 2 rabbits, a few fish, almost a dozen ducks and dozens of chickens. Still my youngest daughter would like a hamster and insists that Santa bring her one next year. Hamsters are not my favourite animal. I once looked after my sister’s pets while she and her family were out of town. I was in charge of feeding the hamster and also the fish in the small aquarium. The hamster was usually busy sleeping when I filled his dish but on the one day that he wasn’t napping, he bit me! And it hurt! To make matters worse, I had to get a tetanus shot--- for a hamster bite. When she got home my sister made me feel better by giving me the address of a web site called “When Good Hamsters Go Bad” or something like that. To top it off, I also found out that the frog that I been so proud of feeding everyday and keeping alive was just plastic. I could not win. Last year Santa brought my younger daughter a stuffed hamster. Do you think he can get away with that again this year? I sure hope so.

Clothes

     Fortunately for us, hand-me-downs no longer have the social stigma they had when I was a child (which was a very long time ago, by the way).When I was young and the oldest of five children, clothes were not a big priority in my family’s budget. Fortunately, uniforms were worn in public elementary schools where I grew up in Quebec, so that alleviated a lot of pressure on our family budget. In those good old days, my mother was allotted a certain amount of cash money and had to make that money stretch as far as she could. She called it her housekeeping money. It seems a far cry from the way people manage money these days, with credit and debit cards. No wonder many of us now live beyond our means. Now my girls get clothes from friends and cousins--- even a much anticipated box of clothes from a well-to-do cousin who lives in Dallas, Texas, several times a year. When we are done with our clothes we pass them on to younger cousins or sometimes friends. It’s a great system. In our case, it involved the one-time purchase of quite a few of those big blue Rubbermaid tubs; one season’s clothes are put away and the appropriate ones brought out. Sometimes they still fit the following year, and sometimes they get passed on. Sometimes they are greeted like old friends with great memories attached to them and sometimes they end up as a rag in Dad’s workshop. Either way, this has saved us a great deal of money and my kids have had plenty of clothes, for which we are eternally grateful.

Hello?

     Did you know that I am your neighbour?  I have a couple of kids, one of whom is learning disabled and a husband who works too much. We have money troubles like everyone else and struggle with a lot of the same things that you struggle with: the HST, the environment, the cost of living, our health, our wealth, what will become of where we live. Will we dance at our children’s weddings, are they getting the best education, where is all that garbage going, will the Canucks win? In the big scheme of things of course these are all small concerns, but they seem important to us now, in this moment and therefore they are significant. Our search for meaning has always been a unifying human issue. Whether we are smart or unskilled, young or old, hippies or rednecks, we all care about what we care about--- me too. I suppose the issue becomes, what do we then do with that desire to ask the big questions and to get some even bigger answers. For some of us there is no time for navel gazing--- sometimes it’s just difficult to get some time alone in the shower. And answers are not a simple thing. There are too many variables; so much uncertainty. There is no black and white. This is what I know: you can’t know it all and if you say that you do, you’re either a liar or my father.

Children

     My kids are amazing to me, of course.  They are way more work than I imagined and a lot more fun than I could ever have forseen. They aggravate and energize me. Because of them I am so much more but also feel so small and fragile at times. I cannot imagine life without them. They complete me and also undo me.

    Enough of the poetry: my life is my children. From the second I wake up and struggle into my bathrobe & slippers to the second that I crawl, almost literally, into bed at night, my day is their day. Even when they are at school, I am cleaning, shopping, picking up, washing, and working for their benefit. That’s life with children. A blessing, a drain, a blessing.

     My girls have said some very funny things over the years and I have tried to write them all down but that’s hard to do. I have a book of their funnier comments, when I can remember to write in it. Here's one: my older daughter (who is 12) recently told my husband and I that her policy will be not to date anyone with long hair, piercings or anyone who smokes. I think that sounds like a good policy. I just wonder if that will still be her policy when she’s actually dating (hopefully, not for 10 years or so).
    Sometimes I find that when you're living with kids, you are sometimes so busy living that you don't have time to jot down the funny remarks or take all the photographs or videos that you'd like to.  I gave up feeling guilty about that... we are here to live life and record it if we can. I am learning to be present with my girls and to really listen to them while they are still talking to me.

PAC

     Over the course of the 8 years that my eldest daughter has gone to elementary school, I have been involved with the PAC (Parent Advisory Council) or Parent's Group as we are now calling it for 7 of them. It has been one of the best parts of being at our school. I have met lots of parents, children, teachers and staff and have enjoyed the experience immensely. Sure there were differences of opinion, other approaches and even problems at the school and district level but there were always folks here who wanted to make a difference.
     I wanted to be close to the school because of my daughter's learning and seizure disorders. I ended up drinking some coffee, listening to some stories, having some laughs but most importantly making friends and feeling a connection to the place where my children have spent most of their waking hours from September to June. That has been enormously important to me over these 8 years and I want to say how much I have appreciated getting to know these folks.  I will not name them here...there are so many of them but here are a few of the places we connected:
      There were fundraisers, hot lunches, field trips, parent teas, talent shows, family dances, barbeques, assemblies and Country Markets, movie nights, open houses, meet the teachers, garage sales, stocking sewing, gingerbread and move the bleachers. There was plants planted, posters painted, bottles refunded, stuff donated, burgers cooked, pictures hung, cupcakes baked, raffles won, hampers filled, water given, presents wrapped, places driven....I could go on and on but you get the picture!  None of these things would be possible if not for these unselfish individuals.
    Thank you to everyone who made these last eight years so fulfilling for me. My older daughter is off to high school in September but my younger one will be here for four more years. And as she wrote in one of the little thank you notes placed on the tables at the Parent Tea: "Thank you for driving us. We would go nowhere without you." That's the truth;)

Loss

     There are all kinds of loss; loss through death of course being the most final. But there are lots of other kinds of loss that can be just as hard to deal with; loss through divorce, moving, illness, dementia, pet loss, relationship breakup or breakdown, betrayal, and so on--- the list is endless. Losing a passport is not like having your dog die which is not like losing a parent. There are degrees of intensity in the experience of the loss and the length of time it takes to adjust to the new reality of life.
     My husband and I experienced several pregnancy losses which, when you are trying to conceive, are devastating. The relationship with an unborn child is tender and tentative but the loss of that life along with all the associated hopes and dreams can be monumental.The loss of someone you know and love can be inconceivable, both in the magnitude of the grief and in the adjustment to life on earth without them. I cannot fathom how parents of a child who has died can go on. Somehow, some do --- most do. Comparing losses is never helpful however. Each of us have our own experience of loss which cannot be rated against another's; it is personal, individual and totally unique.
    I think that it is important that children understand early that there are circumstances beyond their control; loss being one of them. At our house, we have always had funerals for pets who have died; we sometimes have released balloons for losses in our lives. Books like Lifetimes or The Tenth Good Thing About Barney can help children understand life and death and how it affects others. I think that often children have much to teach us about grieving; in their straightforward, uncomplicated ways of addressing their losses, using art or play to tell their story, they often show us the healthiest ways to mourn.     
     Loss is change and change is hard--- harder for some than others. There is security in the way we've always had it....changing that changes everything and then we have to change too. For those of us who like to plan and look forward, loss is the game changer. Finally, young or old, we all have to realize that death and change are a part of life. It's what we do with those experiences that can move us forward or keep us stuck in a mire of grief.

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?

Daughter

    I would like to tell you about our younger daughter and all the reasons that she is one of the best people in the whole world. She hugs her all her teachers every day she sees them and always has. I love that she uses a handkerchief when she has a cold.  She always wants to snuggle when it's bedtime. She has a stuffed monkey that her godfather gave her for her second birthday and she calls him Twoy. She buys dollar store moustaches and parades around like a model with them on. She is our older daughter's answer to prayer. Every teacher she's had talks about how good-hearted she is on her report cards. She reads every night before she goes to sleep. She tries to talk to the grumpy, bitter old lady next door every chance she gets and she always wants to give money to homeless people. When you want to buy something extravagant for a friend she offers her entire bank balance to you. She looks amazing in all her clothes but wears jeans & a t-shirt everyday. She is the only person brave enough to ask her grandad why he is so grumpy and she is infinitely, unbelievably patient with her learning disabled sister who is sometimes amazingly hard to live with. She knows all there is to know about the planet Jupiter. She can do the goat monologue and song from the movie "Hoodwinked" better than the goat can do it. If you are sad, she understands and knows that being quiet and not saying anything is the best thing that you can do. She really laughs. She likes to hold hands. Chocolate and sushi are her favourite foods and she has no idea how beautiful she is. I never imagined that I would ever know anyone as amazing and intelligent and exciting and hilarious as she is. I love her with all my heart.

Consequences

    Some folks believe in heaven and hell, some folks believe in karma...It sounds like a bad country music song, doesn't it? Regardless of what you believe however, there are consequences to behaviour whether it is good or bad. Newton's Third Law of Motion: for every action there is an equal and opposite reaction. I believe that this applies in our own lives as well. "You reap what you sow, what goes around, comes around"--- you get the idea.
    It also follows that when someone does not do their job well, then they are liable to face consequences. As consumers, we buy products that will hopefully meet our needs. If they are not met, we hope that there is a way to remedy the situation. When I managed a branch of a large Canadian jewellery chain, I didn't mind hearing complaints or giving refunds to unsatisfied customers. This was my opportunity to right a wrong and make this client happy and ensure that they would return to our store. All it usually took was some listening, some attention, some sense for them that they were important. Regardless of the product or services we are buying, we want to know that there are policies in place for ensuring consumer satisfaction.
    Folks in the workplace often make mistakes. Professionals make errors too. Fortunately, there is always recourse for addressing these issues: meetings, letter writing, petitions, voting with our feet. We can always go elsewhere to shop, worship, get car repairs, get dental care or even an education for our children. When a favourite minister left my church, I walked away without really even giving the new guy a chance. After years of back and forth, not attending, trying other churches, I am back. What did my children learn from that? Not much that is useful, I'm afraid.
    We are having a bunch of administrative and staff changes at our little school. I wrote a letter to the assistant superintendent and complained. Now, I am excited. Don't ask me why. Everything is going to be alright.

"Shipoopi"

    My older daughter's class went to a local high school production of  "The Music Man" and it was fabulous! The amazing amount of talent, the gorgeousness of the costumes and the musical ability was fantastic. We were so blown away by what these high school kids could do that we are going again....and taking some family and friends.
    There is something about going to live theatre...you see the sweat, you hear the heels on the stage floor, you are looking over the bass player's shoulder and you are aware of the fact that there are living, breathing and in this case, young human beings, who have been working for months to pull this thing off. I am impressed. The passion that these young people and their supervisors have for their craft is huge and impressive.
    There is the other thing...I am still looking around; looking outside of myself and seeing a big, wide world with more in it than learning disorders and PAC agendas and laundry to be done.  Sure,"(Ya Got) Trouble"--- so who doesn't? Who doesn't indeed...

Today

    This post won't be about parenting, children with learning differences, PAC, school and school issues except it will. No matter how much of your life is occupied with those issues, sometimes you need to get out and look around.
    At this time of year I love to putter around outside, planting, weeding, tidying up after winter and even sitting down once in a while to enjoy the sun, the green, the birds and the sounds of my girls' voices outside. When I do, I notice how my daughters are energized by the warmth of the day; they are crazily chasing each other on their bicycles, laughing all the while.
     Last night my husband and I went out to see a favourite band with best friends. He had fallen through the floor at his job site, cutting his legs up mightily and exacerbating an old elbow injury. It might have been easy to forgo the dressing up, the baby sitter and the tickets for a night out to stay home with an ice pack or two. Fortunately we didn't and we had a wonderful, well-needed night out.
    The point is that it's important for me that my life is not all about one thing, all the time. It's easy to go there but we all need a break--- I know I do.  As much as I am involved at my daughters' school and focused on their academic and social success, I am also a person who loves to listen to music and be with friends. It turns out that not only is it okay to be that person, it's recommended. Today I feel great; a little tired but great....

Found

    I wrote about an iPhone lost at school and believed, by me anyway, to have been taken by a fellow student. Well, it has been found--- in a book bag, not stolen, just merely misplaced. How great is that! My faith in human nature has been restored...at least for the humans at our little elementary school!

Spring

    Sometimes it is really important to get outside.  When I did I was happy to see that there are sweet pea seedlings coming up at our place. It might seem like a small thing but sometimes small things make a big difference.
    It has been a difficult school year with the teacher's job action. In my opinion, the sense of community at our school was impacted negatively because of it and other issues: missing items, photographs with no place to hang and the withdrawal from our school of a couple of good friends. And it still is not over. What bothers me is all these adults pretending that the children are not negatively affected by these changes. Of course they are--- we are all cogs in the system and when some don't work or don't work well or at the time they are supposed to, the rest are slowed down or stopped. That's just common sense.
    I don't like to take sides. The teachers profess to be on the side of the children, the government, I suppose, on the side of the taxpayer. My husband and I are two taxpayers with two children.  If anyone is keeping score, I guess we cancel each other out. And so on it goes.
    Anyway, the bulbs are up: fragrant hyacinth, cheery daffodils, tiny crocuses and more. Cherry trees are blooming, the ducks are nesting and I have sweet pea seedlings coming up. At this time of year, nature makes sense to me. Everything is working fiercely, finely & patiently towards its ultimate goal: the realization of its purpose on earth. Thank God for Spring!

Trust

    One of the girls at school has lost her iPhone. It went missing at school. This means that it has been picked up by someone but instead of turning it in, he or she has kept it. This student was told by her parents not to bring the iPhone to school but she did and now it is gone. Her mother is temporarily working back east while the father is keeping things together here, working as well as looking after three school age children. The iPhone was a way for this young girl to keep in touch with her mother; little notes back and forth to stay close and connected.
    This feels awful to me. In a school of less-than-100, an incident of this type is huge. It would seem to me that all the kids would be looking at each other differently--- I know that I am looking at everyone there in a new way. It seems inconceivable that anyone could feel okay about keeping someone's phone--- especially someone you know. At our school everyone pretty well knows everyone.
    I wish that we could do something that would provide everyone with a happy ending: the girl gets her phone back, the thief stays anonymous but learns a valuable, life-changing lesson that stays with him or her forever and our little school goes back to being the safe, caring place that it has always striven to be. I am a dreamer, I know....unfortunately, I am a dreamer.

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?

High School

     We are now beginning the transition to high school and nobody is less ready for this than me. Last week I went to the high school to hear about how my daughter's introduction is to be planned. My first foray into secondary school was the Parent's Night--- an introduction to the school administration, an outline of the programs, a schedule of visits back and forth, a panel of 8th Grade Leadership students and a tour of the school. I am feeling positive. The administration seem friendly, professional, competent and caring. The outline is comprehensive. The schedule begins soon---good! The students on the panel are bright, funny, and interested. The tour starts well until I realize that the L.S.T. (Learning Support Team) Room is at the top of the school on the far end of the 3rd floor and I don't think I could find it again if I tried. I am worried. I am trying to imagine my learning disabled daughter opening a combination lock and running up and down 6 flights of stairs with 1900 other students. I am trying to visualize her sharing a locker with a stranger, buying a lunch, finding her classes, making her way to the bus. I can't do it. It seems insurmountable. And that is the point. It seems unattainable to me. The question is--- is it impossible as far as my daughter is concerned? We shall see. If parenthood has taught me anything, it is that our children are full of surprises....I'll keep you posted.

Success

     Yesterday I was in tears, watching my older daughter at her children's choir performance, singing, dancing and enjoying herself. I was not crying because she had trouble singing the African words or keeping up with the African dance moves, both of which were complicated at times. I was crying because she did both, the singing and the dancing, so well. This experience gave me a taste of what life could be like for her in the future and it moved me profoundly. I am so grateful for the opportunity my daughter has to learn these skills in a safe and supportive atmosphere. Life is not usually easy for her. Yesterday it was beautiful and I saw it.

Fun

     Yesterday, we had a small impromptu party for my daughter's classmate who has left our school. We had snacks & pop, cupcakes & tunes...all the necessary ingredients for a good party. But the most important ingredient for a great party is each other; the friends and associates that are a part of  this particular community. I was so touched that people were able to drop by with their kids and give the child that was leaving, a proper send-off. Change is hard but it is harder still when we are not able to say good-bye.
     There is so much change & loss in our lives but it can be resolved if handled in a sensitive way. We seem to assume at times that children are so resilient; they don't need completion with certain aspects of their lives. My personal experience is yes, children are resilient but they like to be consulted. When we heard that a particularly well-loved teacher had left, I assumed my younger daughter would be devastated. She was sad and she did need time to talk it over and cry. When I asked her later if she would like me to try and arrange a last visit with this favourite teacher, much to my surprise, she declined. "I'm okay" she said. "I'm over it." I remember thinking that that was quick! There have been other times however, when efforts had to be made to have that sense of completion: a funeral for a pet, a balloon released for a death, or a phone call made to say good-bye.
     There is never too small a reason to have a party--- just the fact that it's Friday is reason enough for me! I just loved how some of the mothers went out of their way to bring their kids and even brought some kids that weren't theirs, just to make this child and her family feel loved and missed. That was a beautiful going away present that this family will never forget. And I won't forget it either.

An Ending

     When one of the kids from our school leaves, it feels diminished somehow. We have so few students that every child's departure is very noticeable. This student was in my younger daughter's class and had received a recent autism assessment. It was of course, a devastating blow to the family, just as it is to any family given the diagnosis of a profound learning disorder. There is so much sadness for the parents and other family members; the loss of some hopes and dreams, the almost certainty of difficulty and hardship in the future. So many unknowns and therefore, so much fear of what is to come. This is no easy road. Most every parent of an additional needs child knows this and still it is not easier.
     This child's mother has made a decision to enroll her child in an online program. Unfortunately, she has had to make this decision alone because the child's father has decided to step away from his family. Many families with profoundly learning disabled children come apart. This, at a time when everyone's input, energy and strength is most needed. This mother really needed, really needs, the support of family, community and society to bolster her resources and give her child the best chance possible: the village that it takes to raise a child. Now they will have to find that village, that community elsewhere. This makes me sad. I wish them every success and hope that this new environment will  more than meet the needs of this child.
     This student will be missed by my daughter and I hope that we can continue and build on the friendship we have with the family. I can't help feeling that we let them down; that I let them down somehow. What I must continue to believe however, is that they are on the right track, they are going down this road for a reason and that success will be theirs: one door closing, another one opening--- an ending and a new beginning. Via Con Dios my friends....

Out There

     The other day I wrote a letter asking our school community if there were any parents who wanted to meet together to talk about having additional needs kids in the school system. I have not had many responses but did not think there would be many--- I'm not sure why. Maybe it's just too hard to keep thinking about, talking about, writing about--- you get the idea. When I wrote the letter, I described my daughter and her challenges and so thought that I'd better inform her about what I was doing. She objected to everyone knowing it all. I protested, saying that her school speech on Purple Day (Epilepsy Awareness Day) was pretty much the same thing. She cried and told me that she wished that she was her sister. I cannot blame her. Her sister does most things easily and well, is liked by most of her peers and seems to have it all. While I cannot claim that I never wished the same for her, I explained that she would not be who she is if she were just like her sister. While I would not wish her learning disabilities and seizure disorder on anyone, I would never want my daughter to be anybody other than who she is: a sweet, chatty, curious, curly-headed angel who loves sushi, Justin Bieber and making money--- a helpful, kind, hat-wearing girl who yearns for friendship and loves her family. She is also becoming a teenager. She informed me that there will be no blogging about her once she is in high-school. This defiant pronouncement confirms that she is typical in many ways according to my close friend, and that she will cause us no end of teenage-parental conflict. Anyway, it's out there. I can't help thinking that there is strength in numbers and that  mutual support, information and education will also make us all stronger. That's what I'm hoping for anyway....