At some point I may be able to import all my posts from Posterous, which is unceremoniously shutting down but refusing right now to backup effectively, but for the time being this seemed like a good moment to start fresh. This blog is about living intentionally, starting as you mean to finish, and if I could sound cliche here for a minute, learning from the past and looking to the future, but living in the present. That’s my goal, among others, and it’s not just a dream.
Russell and I are presenting a session at the Canadian Down Syndrome Society national conference in Winnipeg on the May long weekend. I have almost zero anxiety about the presentation itself, because I’ve done a ton of them informally off the top of my head, but we have to fill at least an hour and so there needs to be some kind of structure in place so I don’t ramble incessantly without actually making a point. So I have to write something, and preferably transfer it to some sort of PowerPoint thing so the audience, which is used to seeing things at the same time as hearing them, has something to refer to while I talk.
And this is HARD! I know my subject intimately. We’re talking about Russell’s life post high school, and the choice we made to hire a facilitator to help him achieve his goals. Independent facilitation is part of what we call The New Story for people with disabilities. It helps them be at the centre of their life planning rather than at the mercy of service providers and social services and their limited choices. To that end I’ve joined the Board of Directors of an organization called Facile, which offers training, support, and resources for facilitators and the families they support. See, I can write it here, why not in a formal presentation? Hey, maybe I’ll just copy my blog post. I’ve got a ton of notes on Scrivener, which helps me organize, but that’s all they are right now — index cards on a virtual cork board.
Essentially I want to talk about The New Story and its guiding principles, the business model of Facile, the challenges we’re facing as an organization that people (read funders) don’t understand, what a facilitator has meant for Russell’s life, and then share a video that Russell is currently making with a community cinema club. Russell will present that part, which will probably take about 10 minutes, so I have to fill up the rest. My biggest problem is staying focused and not going off on tangents. Because anyone who knows me knows I love a good tangent. But I also think it’s important to talk about the choices we make as we go through life and how they can lead to success or challenge in the next phase. And do all this while keeping in mind that in many situations there are not real choices being made, it’s a take it or leave it situation.
Ultimately, I think that it’s never late to take control of your own life, so the message I will send is that even if your child has never made a decision before about what they would like to do, say, wear, eat, where they would like to live, work, or play, and so on, YOU could make a decision to let them start. Maybe if I blog about this every day for a week I can weave it into something structured.
The publisher I work for (WLU Press) has just joined NetGalley, so I’ve spent the last few days learning about that from the publisher end. Today I created my first widget for one of our titles. Let’s try it out, shall we? You’ll need a NetGalley account to access it (it’s easy to set one up if you are a book reviewer/buyer) but if you must read about the philosophy of law and community, now you can.
For the past few years there has been a huge hole in the ground at King and University in Waterloo, just north of the corner, that was usually full of water and hosted old political signs and other garbage. I work in the building beside it, which is a four-storey office building with businesses on the main floor, including restaurants. Because this is a major intersection near a university, there are many fast food places available already, but when the building started to go up next door, I was excited about the prospect of something new.
After months of grinding machinery that made my office shake, and constant interruptions to our commute (which driveway will be closed today?), the building is almost finished and the liquor license applications are taped to the window.
We are getting a Sushi chain and a sports bar. But, wait, we already have a sushi restaurant (independent) and a sports bar (independent) on this corner. What can they be thinking? I have noticed huge turnaround in the restaurants on the ground floor of our building as well. When we first moved in there was a crepe place — gone on a midnight flight. Not long after opened a lovely Italian chocolate place — they didn’t last six months. A new frozen yogurt store opened up around the corner from the other one. We have an Italian sandwich and pasta place where the chocolate was, and the sign on the abandoned crepe store says “Subway opening soon.” Two doors down from Quick Sandwiches, the best sandwich shop in town, lined up out the door every day. Again, I ask, What are they thinking?
I guess the question should be, Are they thinking at all? Do they not consider independently owned businesses to be competition to the chains. Is there not some process in place at the city to prevent the chain from moving in next door? This doesn’t sit well with me. I actually think Quick Sandwiches can kick Subway’s ass, but that’s not really the point.
Anyway, that’s my rant for the day. As you were.
First, books. These are books I read in 2012, not necessarily published this year. They’re not ranked other than as a collection of my favourites of the year. It would take far too long to decide which of these is better than the other. They all had an important place in my reading life.
1. Code Name Verity by Elizabeth Wein. I won’t stop until everyone has read this book. It’s written for YA but I couldn’t get my YA interested in it. She’s all over John Green but this didn’t grab her. It did grab me, hard, shook me up, stomped on me and left me hardly breathing.
2. Gone Girl by Gillian Flynn. One of those “can’t put down” books. Great villain, would make a wonderful movie.
3. The Juliet Stories by Carrie Snyder. I was waiting for this book. Waiting while Carrie wrote it, worried over it, blogged about trying to write and mother and exercise and everything else that we do. I love her voice and I was so hoping to love the book. And I did, I do. I’m so glad it got the attention it deserves.
4. The Fault in Our Stars by John Green. Another YA that took my breath away. This is THE book of the year for my daughter and her friends. I like when I can read it on a whole different level (ie., I am not in love with Augustus Waters, although I would have been) and still come away with the same enthusiasm.
5. Algoma by Dani Couture. I had no preconceived notions going into this one. It was pressed into my hands at an Eden Mills meeting and I thought it would be good to read it since Dani was coming to the festival. A highlight of the year. I like books with strong and quirky families and I loved also the sense of place in it.
6. Cadillac Couches by Sophie B. Watson. I love books that capture a love of music in them because my life revolves around those two things. This was fun and quirky and warm and really nailed how it feels discovering a new artist. Great dialogue.
7. Bitterblue by Kristin Cashore. Long-awaited sequel to Graceling. With their companion book, Fire, these are three of the best YA fantasies I have read. Graceling came out at the same time as The Hunger Games and got lost a bit in the buzz, but I think it’s far superior.
8. Natural Order by Brian Francis. Exceptional. My heart broke over and over and over again. Without bashing us over the head this book asks us to think about our own prejudices that come to light in the smallest of our actions. Character depictions are exquisite, especially Charlie, the father,about whom we know little for the most part (because of the narrator perspective), but who turns out, in the end, to be the best person in the book.
This is so difficult. I’m just as susceptible to the next big thing as anyone, and so I like Mumford and Sons, of course. But some of my best music finds are local singer-songwriters or folkies, so I’m going to include them too. I follow a lot of blog links for new music and can heartily recommend both Largehearted Boy and I Am Fuel, You Are Friends as well as NPR Music. Again, this is music I listened to this year as opposed to albums released this year. It is far from complete.
1. Kathleen Edwards – I’ve been a Kathleen Edwards fan since the beginning, and I’m not completely convinced that adding the dreamy Bon Iver sound was necessary but it has vaulted her into another orbit, so I’m happy for that. I’ll probably not get a chance to see her at the pub again, though, and that is a shame. Voyageur is a fantastic record and deserves all the accolades it’s getting.
2. Matt Andersen — hello, where have I been? I knew Matt Andersen existed and had heard a few tracks on CBC, but as someone who finds The Vinyl Cafe as nails on a chalkboard I hadn’t had much exposure to him. I saw him at Summerfolk in Owen Sound this summer and essentially followed him around the festival.
3. Joe Crookston – About a year or so ago one of our local singers, Al Parrish, introduced the folk group to songs by Joe Crookston. We were all so hooked on Fall Down As the Rain that we booked him for a show this past September. Wonderful singer and songwriter. I immediately purchased his three albums and they’re on repeat frequently on my iPod.
4. Rose Cousins – Her new album We Have Made a Spark is one I often play in the background while I’m working (editing or writing). There’s something very grounding about it and her cover of Springsteen’s If I Should Fall Behind is wonderful.
5. Rosanne Cash – I started following her on Twitter and, liking her wit and politics, subsequently read her autobiography. I really liked the duet she did with Springsteen on the album The List and her duet on the Kings and Queens album (Blackie and the Rodeo Kings). The List is an album I picked up after reading her book and learning about the importance of the songs to her dad and the process she went through to make the album. The production is spare and her wonderful voice and the guitars are all you need.
6. Bruce Springsteen – After a bit of a drought I started to get back into Springsteen when I made the acquaintance of Robert J. Wiersema, author of the excellent memoir Walk Like a Man. Our conversations about favourite concerts, etc., led me back to the music and with the release of The Promise and then Wrecking Ball I reconnected with Springsteen’s music in a whole new way. I saw him for the 6th time in 2012 and although he doesn’t move as well as he did 30 years ago he is still a force to be reckoned with.
7. Patty Griffin – Always Patty Griffin.
8. Tedeschi Trucks Band – New to me this year. Susan Tedeschi has an incredible voice, reminds me of Bonnie Raitt at her finest, and the band is fantastic. When I want something with a little more oomph than my singer songwriters I usually head here.
A lesser medium for me — I tend to watch things long after others because I just can’t be bothered. As you’ll see from my list.
1. The Newsroom — having been turned on to Aaron Sorkin shows by others I was eager for this one. Frustrating at times, but nobody else writes dialogue that can move me like Sorkin’s does.
2. Rookie Blue – I know, I know! Pure fluff, but I like it.
3. Republic of Doyle – funny, smart, and Newfoundland. Hot main character. Who’s who of guest stars.
4. Slings and Arrows – I have watched this before, but I’m introducing Kathleen to it. With her years of drama training and her love of the Stratford Festival she is eating it up. Fun to rediscover it and I want more. I wish there was more.
5. Suits – a ton of fun.
6. The Avengers – Couldn’t care less about comics, but it’s Joss.
7. Les Miserables – Loved it. I am devoted to the stage production and was worried about the movie, but although it was different, it was wonderful. I’ll likely see this a few times.
So there you have it. When I’m not glued to my computer either editing, facebooking, or tweeting, this is what keeps me busy. Happy 2013 everyone. I hope it brings a great list for next year’s post.
What can I say about 2012? It was a year of many changes for us, some good, some challenging. Here, without any kind of ranking are some of the highlights:
1. Russell finished with school for good. There’s much more about this transition here but I can say a few months later that it was the best thing for him. He’s extremely independent, has just joined the Y and is accessing drop-in services there, and he loves his job. Next steps: paid work and buiilding a social circle with help from his faboulous facilitator Lori.
2. I joined the board of directors of Facile, a new organization that provides facilitators for anyone who needs help accessing community. We are starting with adults with disabilities, but the possibilities for this kind of service are many. It is fee for service but offers bursaries to families or individuals in need. The independence that this individualized service provides is wonderful, and Russell’s transformation is a good example of that.
3. Kathleen’s choir went to Austria and kicked butt in the Summa Cum Laude International Music Festival, coming home with the first place position in the mixed choir category. They had a wonderful time visiting the Sound of Music grounds, singing in old abbeys and churches, visiting the cemetary in Vienna in which many of the great composers are buried, and building lifelong friendships within the choir and with kids from around the world.
4. Annual conference of the Canadian Down Syndrome Society in Toronto. This is always a great opportunity to see old friends, make new ones, and sharpen my advocacy skills as I learn from those who have walked this road already. This year’s highlights were the keynotes: Marlee Matlin, who is a beautiful person throughout. She positively shines, and the attention she paid to everyone lucky enough to have personal contact was focused and giving. Also, Joe Dale and Mark Wafer from Rotary at Work, who introduced me to a new way of pursuing paid work for people with disabilities.
5. Our week at the cottage in Essex County in July. Idyllic.
6. Our week at Xcaret, Playa del Carmen, Mexico, in February. Idyllic.
7. Springsteen concert in Hamilton with friends. Happy to share my love of Bruce with my sister Helen, and to experience the group love of an entire arena of fans.
8. Changes for both Bobby and Mary. Bobby moved to Saskatchewan to secure better work and continues to look for something he can settle at. I don’t expect he’ll stay, but the experience is invaluable. Mary left university and plans to work for a while and return as a mature student in a couple of years. In the meantime she is upgrading some courses she needs for a new direction.
9. Over the Rainbow. This consumed us for most of the fall. Kathleen’s school and choir friend AJ Bridel made it to #3 in the search for Andrew Lloyd Webber’s new Dorothy. Much fun was had in the cheering and going to the studio to watch the live show was a lot of fun.
10. Oh yeah. I turned 50. Whatev.
Frivolous post to follow about books, music, and film/TV I enjoyed this year.
Today, quietly and without fanfare, is Russell’s last day of high school. As a student with special eductional needs, he is eligible to be in school until he’s 21. Well, technically all kids are, but most of the others are out the door at 18, as was the case with most of Russell’s friends. As I struggled to come to terms with what he would do to fill his days when he was finished, I was reluctant to give up that safety net and insisted he keep returning, long after he was done in his own mind.
But then two wonderful things happened, one leading into the other. The first is that we met Lori, Russell’s facilitator. To be honest, Lori and I have been friends for years, and she and Russell know each other well from Buddy Choir. But we formalized our relationship, and we’ve never looked back. She assumes competence in Russell and helps him take risks his mother would balk at, leading to impressive accomplishments. Second, Russell found his place in the kitchen at The Working Centre. This centre, for those who are not familiar, is truly an inclusive environment, a real gift to the community. From its own website:
The Working Centre is a non-profit, community-based, volunteer inspired venture that seeks to give individuals and groups access to tools and opportunities to become involved in the building of community projects in Kitchener-Waterloo and surrounding areas.
The centre helps new Canadians, older out-of-work citizens, citizens with disabilities, really anyone who needs a hand up to find meaningful work. They operate a resource centre for employment, a kitchen and a cafe, a greenhouse, a used clothing store, bicycle and computer recycling — anything that can be used to offer training or retraining for community employment. Russell loves it there, and they love him too.
Lori has been instrumental in keeping that relationship on a positive note. Offering just the right amount of support to both Russell and the kitchen (Russ HATES to be over-supervised) she is able to keep problems small and everyone on track. And the track has been the gradual shifting of school to work. But Russell knows his own mind, and there was just no way he was doing another year of high school, so gradual changed last week to RIGHT NOW.
The plan (devised by all of us) is that Russ will work mornings in the kitchen, start to train in the front of the cafe, access drop-in recreation programs downtown, and pursue some further training most likely through the W.A.L.E.S. program.
I have to say that we have had nothing but a positive experience throughout Russell’s school life. From Junior Kindergarten to this last year he has been welcomed and supported and included. Teachers and staff at St. Paul’s Elementary School and at Resurrection High School have given him a strong foundation going forward. I came up through the Catholic system here in Waterloo and so did three of my kids. With Kathleen at Eastwood in the public system, Russell’s graduation really is the end of an era with WCDSB. To everyone, I say a big thank you.
We are excited. Well, Lori and I are excited. Russell is relieved to finally be able to say “I am DONE with school.” Deep breath, here we go, JUMP!