Proud

     I am so proud of the steps our daughter has taken towards independence this past year. As she is a young adult with epilepsy and Non-verbal Learning Disorder, I think that they are note-worthy particularly as they all occurred in a relatively short span of time. Here's what I've seen:
- Becoming seizure free. Our prayers were answered or our daughter outgrew her epilepsy or the medications started to work but none of that would be possible without our daughter looking after herself, taking her meds, getting lots of sleep, eating right and staying away from drugs and alcohol.
- Finding her passion. Our daughter tried hard in her over-year to work out what she wanted to do with her time. Figuring that out is not easy, ask any young person, typical or not. It can be a struggle. For her it seemed to be a result of letting herself be open to possibilities.
- Following through. Once she realized that she wanted to work with plants and flowers, she worked hard in our garden to sow, weed and water an amazing array of sunflowers that blew a lot of us away. They were astonishing! The sun, rich soil and lots of water did their share too of course but the results were incredible.
- More follow through. As many folks know it is difficult for disabled people to find work. A partnership with WorkBC helped her immensely. With their assistance with resume, job hunting and interview skills she was able to find the perfect employment. The greenhouse that she works at is friendly, inclusive, encouraging, right around the corner and she loves it!
- Looking around. While we were in a big box store, I was glad to see that our daughter had found the product she wanted, navigated through the aisles, got in line and paid for it herself, without my input, direction or support while I stood in a seemingly interminable lineup in Customer Service (a contradiction in terms if ever there was one). In an environment that can be overwhelming for her, I was thoroughly impressed.
- Leaning in. I noticed our daughter giving a hug and some words of encouragement to a fellow Special Olympics team member whose dad had died two days before Christmas. I was proud to see her as a positive role model to other disabled athletes, prouder still as a mother to witness her empathy and compassion, qualities that do not always come easy.
     More than anything, I have seen our daughter become more mature, more willing to try and to learn, more open to change and the possibilities that change presents. She has always been my hero but now I also see her as an adult person, admirable and able. Doors are opening and she is saying yes!

Fees

   

     Back in the summer our eldest daughter was sent a letter from her bank advising her that after her nineteenth birthday, her chequing account would no longer be without a monthly fee; the rationale being that she was no longer eligible for a youth or student account and so her bank would now be charging her on a monthly basis. We met with our friendly neighbourhood bank rep who explained what her options would be once that birthday came and went. Unfortunately we weren't paying attention and yesterday she discovered the fees that had been diminishing her balance, small though they were. She was quite unhappy to see this especially when she noticed that there was a passbook fee additionally being subtracted from her account on a monthly basis. Our daughter has been working for almost three months now and understands what her time is worth on an hourly basis. Needless to say, a plan to revisit the bank was in order.
     I did some research on-line, looking for accounts that benefited people with disabilities and discovered that our bank, TD Canada Trust, waives the monthly fee on a minimum chequing account if the account holder is an RDSP beneficiary. We have been saving money for our daughter in a registered disability savings plan for some time now so I was pleased to see this option available. In my opinion every bank should make this available and even offer this opportunity to other disabled folks, even those without RDSPs.  It is hard enough to live with physical or mental challenges without having your hard earned money clawed back by a financial institution. We did revisit the bank and met with our rep. The account was set up and order was restored once again.
     While at the bank we did mention our views on free chequing for folks with the PWD designation. We have learnt a lesson and though it was not a terribly expensive one, it was a hard one. When you have special needs, every nickel counts, especially when pennies no longer exist. Our daughter and I would suggest that you check your bank accounts and make sure that you are not paying unnecessary bank fees. After all, should your money be in your pocket or the bank's?

Disappointment

     Air travel can be hazardous to your health. I am referring to the stress generated by missed connections and plans derailed. Such is the case with our intended journey today. Seven of us hoped to travel south to stand with our extended family as they sought to gather us all at a Council of Government meeting to change the intersection where our nephew and cousin Jordan was killed this fall.
     Severe rainfall delayed our incoming and outgoing flights so as to make it impossible to catch our connecting flight and therefore to make our meeting. The resulting choices were limited and probably would result in a long drive through the rainy night possibly on the very roads we had seen take our precious nephew's life earlier this fall.
     If his death has taught us anything it is that that risk is too great. Maybe we are holding our children a little too tightly these days but the potential loss could not be borne. So we sit here from home, missing our extended family, wishing we could be there to show our support and for them to feel our love, hoping to hear that something positive came from the meeting today. As Martin Luther King Jr. so eloquently stated, "There can be no deep disappointment where there is not deep love." He is so right!

Work Again

 

     Our daughter and our whole family hoped that her summer of self-employment at "Hayley's Garden" would turn into an employment opportunity and it has! With the support and help of Sources Community Centre, WorkBC and her employer, she now has a great job and we could not be happier for her. Our daughter did benefit from the resume, skills assessment and interview assistance given her. And the fact of her disability meant that she qualified for a wage subsidy for the period of her training and probation which probably made her a more attractive candidate as far as her employer was concerned. The employer was amenable to the hours that our daughter wanted to work and that flexibility was crucial. The end result is that she has a place to go every day where she can work hard, feel valued and get paid as well. What a blessing!

     It is a fact that it is hard for a disabled person to find regular, steady, paying employment. I know many mothers and fathers of special needs kids who would love to see their adult children find work. An employer does have to be able and willing to support an additional needs employee, especially initially and that might mean a longer training period but the payoff is well worth it. It is commonly known that disabled employees are loyal and tend to stay with their employers, saving on training costs in the long run. As Doug Tennant, Executive Director of Semiahmoo House pointed out in a recent article in our local paper, “The benefit is that employees who have disabilities have been demonstrated to be much more loyal. They will stay in their job a lot longer. If you look at restaurants and other hospitality industries, the amount of money they have to put into recruitment and retention is monumental.”

     Our daughter loves her job and I am sure will stay satisfied with it because it is something she really wants to do. She discovered her desire to work with plants and flowers over the course of her over-year when SACL and the Surrey School District encouraged her to make goals for herself and then go after them. It really was a collaborative process that brought her to this point in her life and we are all so grateful for this new opportunity. And to be twenty-one months seizure-free on top of it....wow!

     

Nephew

     Many families have a story of the tragic loss of a young person, gone before their time, a death without reason, without purpose, one that defies understanding. Such is the case of our family now. We have lost a nephew, a cousin, a young man of such promise and potential that it cannot be overstated; he was one of our best and brightest. And we are sad beyond measure and struggling with the senselessness of it all.
     The death of this young man has devastated all of us who knew him; we are many and we are bereft. He was such a good boy, a caring son, grandson and brother, a faithful friend, an excellent student and a person of integrity and worth. He was fun and funny and had a wonderful sense of humour; his smile could light up any room. He loved music and motors; he knew how things worked. He had recently packed his belongings and moved to another state to start his courses in computer engineering. Even in his short time there he had made an impact. He had made friends. His memorial service there was witness to this fact.
    Our nephew was killed in a motorcycle accident. It happened as a result of an immense error in judgement made not by him but by the driver of the car that hit him. Every morning when we wake up, we have forgotten and then we remember and know again that he is gone. And we are never the same.
     We love you Jordan, we miss you. And we always will.....

Please sign the petition to prevent more needless deaths: https://chn.ge/2CcphBI

Club

     Books and reading have always been important to me. I remember when I was a girl balancing a flashlight under the covers while secretly reading a Nancy Drew mystery well past the time I should have been asleep. There was and still is nothing I like better than a good book: mysteries, biographies, historical novels, I love them all. So I was particularly happy when our eldest daughter began to show an interest in books. Reading has never been especially easy for her; her learning disorder makes phonics difficult. She relies on her memory of a word seen before to make sense of it. She is not a fast reader but steady and regular.
     The book club she is part of is a great encouragement. Her friend's mother came up with the idea and it is brilliant. Several of her friends who are of a similar reading level and with like interests read the book and then get together to watch the movie and discuss aspects of the book with questions that can be found on-line. We take turns picking the book and hosting the evening.
     Their last book club meeting was hosted as a tea party in honour of the classic Alice in Wonderland by Lewis Carroll. The girls dressed up as their favourite character and the tea treats were reminiscent of the book's details: checkerboard sandwiches and flagged cupcakes, tarts with hearts and cheese and tomato toadstools, what a spread! We all ate like queens and had a marvelous time. The mums even got a chance to chat while the movie was playing! Yay! The only thing better than a good book is a book which becomes even more meaningful when shared with others. We are better together...

Jerry

     As a child I remember my father laying under a car more times than I can say.  Later whenever I had an automobile issue, I would call my dad. However there comes a time when you are too old to ask your father to help you with your car problems and when that day comes, you have to call Jerry. Jerry never hesitated to help if help was needed; no matter what time of the day it was, you could count on him. And we did.
     Jerry was more my husband's friend than mine. They spoke on the phone and saw each other fairly often. Whenever he drove up into our driveway he would always have a smile on his face and something friendly or funny to say. He was an easy guy to like. Our families had met at church years and years ago. Back then Jerry and his wife had four of the cutest little girls we had ever met. They are now lovely young women.
     When my husband had an accident in his shop a couple of years ago he was hurt quite badly, bleeding from his head and unable to move but he was able to press the one button that got Jerry on the phone. He had just gotten off of a plane but he answered anyway. Jerry then called me and so an ambulance was soon on the way. My daughters believe that Jerry saved my husband's life. All I know is that in a world of busyness, he always had time for us. And for that we will always be grateful.
    Jerry died recently and his loss is felt deeply by so many people. He had struggled with a previous heart attack and had made some changes in order to live a healthier life. Unfortunately he did not survive this latest cardiac arrest. He was not an old man and so his death is especially sad. His daughters had looked forward to much more time with their dad. We all thought that we had many more years with our friend Jerry. If I could talk to him one more time I would thank him: for the smiles, the jokes, the car repairs and the call. We'll miss you Jerry!