The Littlest Teacher

Along with my sons, I am now also raising my three year old granddaughter. I had thought I wasn't up to the task of starting over, the task of raising a small child, but I was soon shown differently. Because it isn't a task. Its not a chore. Raising a child is a journey filled with love and learning. 

The Unexpected Journey- Cory's Story

The Unexpected Journey- Cory's Story

 

When you have children with special needs you tend to seek out those going through the same challenges your own family is experiencing. Even if you're lucky enough to have a supportive extended family, you still crave the company of those who KNOW the life. Those you can vent to, and provide support to in return. Facebook has its faults, but one of the things it does well, very well, is allow communities to come together. I 'met' Cory through one of those communities. 

This is her story, in her own words

A Year to Remember

Autumn, a time of reflection

The last few years have been fraught with challenges. But with challenge comes growth. So even though the last year has been difficult, its been one to look back on and honour. 

My eldest son Chris has spent the last year in a relationship with a wonderful young woman and has embarked on his own personal journey. He is coming to terms with having Aspergers, understanding his own challenges while refusing to use the label as an excuse. Returning to school, getting his diploma, and now making plans for a post secondary education, he is on his way to becoming the man he's always wanted to be. His perseverance through his struggles is an inspiration. Chris has worked hard at becoming a good father, good partner, and at simply bettering himself. He has finally realized he is a pretty exceptional young man and is taking life head on!

Last year at this time my middle son Eric was coming home from yet another hospital stay. Eric is 20 years old, and autistic. For the last couple of years he's been in crisis. This is common in young autistic adults, but that doesn't make it easier, nor does it mean services to help them are readily available. Eric cannot guide his own care, nor advocate for himself, so I have been forging my way through this new frontier, doing the best I can to make sure my baby has what he needs. Over the last year he has made some tremendous gains ( a few pitfalls along the way, but we're still moving forward). Eric is discovering his ability to say 'No'. While this is very challenging for me (Eric is 200lbs+), it is comforting to know that as he nears the time when he will live elsewhere, cared for someone other than myself, that Eric will be able to voice his objections to things that are unpleasant to him. Every parent of a child with special needs, but in particular those who are non-verbal, fears what will happen to our children when we are not there to look after them. So this step in Eric's development is a huge relief for me. He's not quite as vulnerable anymore.

My youngest son Mark has started his second year of high school and has just encountered his first life road block. A gifted young man, academically as well as athletically, charming and well rounded, he has never had to WORK at succeeding, at anything. He is now finding for the first time in  his life he he has to study for tests, and he has to learn study and homework habits. I went through this myself in High School. Mark and I have a very close relationship. He opened up about his struggles and together we are working on changing things. Not many 16 year olds confide in their Moms, or listen to them either, so I know just how lucky I am, and I know he'll get back on track and make the life he dreams of for himself.

I have also grown. I have embarked on a new phase in my life, doing the things I have always wanted , but was afraid to attempt. Like writing. I've had to scale back my work because of Eric's high needs, but that allowed me the luxury of being able to sit in front of the keyboard. Watching other people in my life overcome their own personal hurdles to expand their differing horizons motivated me. Battling for my son reminded me I am a very strong woman, who can make it through just about anything. So I bit the bullet and started writing. I haven't been happier.

We have a lot of struggles ahead as Eric enters into the very incomplete world of adult services for people with special needs. But we'll make it through. We'll grow some more as a family and as individuals from those challenges. Life is a journey. Sometimes bumpy but always interesting. It sure has been a year to remember!

Now, onwards and upwards!

The Paths We Travel

 High Park and the Paths We Travel

One of the few things every human being has in common is their exposure to stress. It comes in different forms and levels for all of us, but nonetheless we all feel its effects. Physically or mentally stress left unchecked takes its toll so we each must find our own ways of handling and minimizing it. Live music, and the arts in general, work like magic for me, but are not available 24/7. And stress knows no time-line. So recently I started to re-visit an old childhood hangout of mine. High Park.

Through our greatest trials we discover ourselves

I chose to believe that evil cannot simply beget evil

I originally wrote this as a 'facebook note' on the tenth anniversary of 9/11. With very minor editing I am re-posting it here because the thoughts, feelings and sentiments remain the same. 

We all have the images of that horrible day ingrained in our memories, thus I have chosen not to provide pictures or links. 

Instead, all I ask of you is to please open your mind to your own memories and feelings of that time and perhaps you will discover how your own life has changed for the better. 

Perhaps even discover your own awakening. 

Good triumphs

I invite you to join me on the  journey back through my personal awakening and discovery brought about by the horrors of that time. 

 

Toronto's Croft St, an Ode to Street Art

One of the very first LEGAL pieces of Street Art

Two years ago, my son Eric was rushed to the hospital. He was in acute care for two weeks. I went to visit him twice a day. To alleviate my own anxiety before and after each visit I would go for an hour long walk. On one of those walks, I discovered Croft Street.

YouTube Self-Discovery

I logged onto YouTube today, for the first time in Who Knows When. 

Well it turns out my 20 year old son, severely autistic, unable to care for himself, has apparently hacked in.

Repeatedly. 

For the last two years. 

It shouldn't surprise me. 

About 6 months ago everyone in my contacts list received an email saying:

" Eric good boy. Eric get presents. Eric get Mickey Mouse toy, Ford C600 model kit"

Eric is unable to bathe himself adequately , cannot speak beyond an 18 month old level or understand danger, but he sure knows his way around a computer! 

My son's skills are all over the spectrum, pun intended! 

ANYWAY, when I logged on, I noticed I had a "watch later" and "favourites" tab. I had never noticed this before, but SOMEONE (guess who) must have, because I had entries logged for the past 2 years. Remember, my severely autistic son  had "favourited" these videos, but for the last 2 years anybody looking would naturally assume I had done so. 

I decided to watch them myself, and see why "I" would single them out.

Somehow, Some Way, We Find Each Other

If you know me, or have been following this blog, you will know that my adult son Eric is autistic. He has progressed a million miles beyond the prognosis doctors gave him as a 3 year old, but he his still profoundly challenged. He will never live on his own, always need care and in recent years has developed anxiety disorders that make life very difficult at times. He is also very loving, and extremely loveable. I call him my divining rod, but rather than pointing out water, he exposes just who is, and who isn't, a truly GOOD person. Life with Eric is filled with daily miracles. He keeps innocence alive in my home. That being said- it definitely is not easy. Eric has developed severe agoraphobia and separation anxiety. In contradiction to his fear of leaving the house, he is also a 'wanderer' , he may take off at any given moment with no sense of danger, no safety awareness and limited verbal skills. Lets just say he keeps me on my toes.

Bruce Cassidy and his amazing band at Hugh's Room

You constantly need a full energy tank in my home and I've discovered that I need a regular break to keep my tank filled. My respite of choice is live music. This past Thursday a wonderful show was happening at Hugh's Room , part of The inaugural World Music Festival being staged by Jazz FM 91.1. It was South Africa night and the Bruce Cassidy Band was holding a tribute to Hugh Masekela. I couldn't wait!

Donald Quan, Musideum, and Healing Through Music

Donald Quan and his beautiful family

During the summer of 2010 I discovered an amazing, and at the time not very well known, music venue, Musideum. Donald Quan's gorgeous inspiration brought to life.

 

"MUSIDEUM is a magical room where music always passes from performer to audience with zero hindrance….as ripples and vibrations pass through water, music passes through the air and the soul with musical instruments being the means. Musideum is a place where music is always shared with all that are willing to receive."

If you've been lucky enough to catch a performance at Musideum you are sure to have met Donald. His infectious glee introducing any act leaves you addicted. From that point on you can never get enough of Donald and his beloved Musideum. When I began Days of Whine and Rosé I KNEW I would have to write about him. So I started to do some research. Donald is an accomplished musician and composer who has numerous awards and nominations to his credit. In 2008 Donald, noticing a lack of places to pick up world instruments, not centred on the musician, but on the instruments themselves, opened Musideum.

A warm rich environment of aged wood and exposed brick is filled to the rafters with instruments of every sort, a truly zen-like atmosphere pervades. You can't help but feel at peace as you walk through the doors. Eventually Donald started to open his doors to musicians seeking a more intimate venue, forever beautifully changing the Toronto music scene. But as I continued my research, I came across stories that blew me away. I easily came to a decision. This story would not be about Musideum per se, it would be about Donald.

Most of who I am is a creator

Donald Quan

In August of 2009, Donald was playing keys for the Derek Miller band at the Kitchener Blues Festival. He felt his heart beat erratically. Then it stopped. Donald collapsed onstage. He was clinically dead for 17 minutes. Donald had suffered a heart arrythmia, a condition brought about by the gruelling physical and emotional stress endured as a touring musician (similar to a marathon runner). Unlike most who experience this extreme medical condition, Donald survived. His wife pregnant with twins and a world of music yet to explore, Donald was not about to give up. He was placed in a medically induced coma to enable his physical healing, but he suffered damage to his brain tantamount to a massive stroke. As a young child I watched as my once vibrant grandmother was taken away from us by the effects of a decade long battle with stroke after stroke. She fiercely battled back each time, in any way she could, until her body was too tired to fight any longer. That personal war she waged to heal her brain was always an inspiration. It takes incredible internal reserves, excellent care and a fair bit of luck to recover from a stroke. I guess thats why I have such unflinching admiration for those who win the battle, like Donald Quan.

With the help of The Toronto Rehab  Donald learned to walk and talk again, learned to balance his books, take the ttc, and all the basic life skills you need. But Donald isn't defined by his life skills. Creativity and music are at the core of Donald's being. As incredible as his practitioners were, that was a part of him they could not heal, and Donald would never feel whole without it. There was no way Donald could resume the life of a touring musician without his skills, he had to get them back. There were bills to pay and a creative need that couldn't be suppressed. Doctors warned Donald that the stress of touring was likely to cause another attack, and he may not be as lucky the second time. There are no rehab facilities that help you recover your musical talent so the clinicians tried desperately to get Donald to accept his physically and creatively restrained lifestyle. Luckily for us, Donald, a classic A-type personality would not take the lack of medical resources as an excuse to NOT heal this most precious part of himself, he'd find a way.

Prior to Donalds brush with death, being an actively touring musician, he had others running the day to day operations of Musideum. The problem with having a vision is rarely do others share it. The brilliance of Musideum, without his regular input, had fallen to the wayside. This was something that weighed heavily on Donald, but with his hectic schedule there was no other option. AFTER his brush with death, Donald was inspired. He'd "prove to the naysayers, challenge myself and make Musideum, and myself, BETTER than before!" Donald fought to bring back his technical skill, but what better way to rehabilitate his ESSENCE, his musical talent and creativity, then by taking Musideum back into his own hands, bringing the true vision to life.

Musideum is located in an historic building at 401 Richmond, one of the most successful re-imaginings of what had been dilapidated urban factory space anywhere. People come regularly from countries around the world to study the creative and financial success that is 401 Richmond. Donald had a long history there, one of the very first tenants in the building. "I'm going to show MYSELF I can hold these concerts". But how? Musicians do not have vacation time, get paid sick leave or qualify for EI. His finances had dropped to practically ZERO. HOW could he keep Musideum running, with no touring income to pay the bills all while rehabilitating his talent? As I'm sure you've figured out by now, Donald is a pretty exceptional person, and very easy to love. When Donald came to the decision he would unfortunately have to close Musideum, 401 Richmond would have none of it. His fellow tenants and management  did all they could to help him to re-establish himself, and Donald didn't disappoint them, or US! 

As a lifelong composer and musician, Donald had always been troubled by the treatment artists received while touring. Venues that were inadequate from a technical standpoint, booking agents who treat the talent as less than human, etc etc. He was determined to make Musideum into an artists' paradise, thereby allowing true creativity to thrive and be SHARED. Musicians and artists of all genres are treated with respect at Musideum. From a technical standpoint, the place is incredible, better than most studios. Donald works with the artists, but never hinders them. All of the artists I've spoken with have said the phrase they hear most often from Donald is "This place is here for you as much as for me". He provides studio time, advice and a venue to artists who put as much into their own careers as he puts into his. He has incredible respect for artists committed to their work. To date since opening the re-visioned Musideum after his collapse on stage, Donald has been host to over 450 performances. Shows are booked 3 months in advance, and as a frequent audience member I can tell you performances sell out quickly. Donald's stress levels, now that he is actively involved in Musideum, have dropped to practically nil and he is happier than ever before. Able to be with his family and fulfil his creative needs all while operating a successful business. A business that brings wonder and joy into the lives of so many. Artists adore him!

"I have have had the pleasure of performing and recording a XMas concert at Musiduem and it was magical. Also, Donald was beyond gracious when hosting a Benefit concert for former Ten Feet Tall owners: Carin and Andy. He is a lovely soul with a deep respect for musicians and their struggle to survive in a world that depreciates artists. He is a music encyclopedia and a giant talent himself. He IS the real deal. " Pat Murray

"I've had the distinct pleasure of performing at Musideum upon several occasions. From the excellent piano to the ambiance of the space to the music audiences that Donald attracts, it is an experience that I cherish."  Rita di Ghent 

Always a giver, and inspired by his friend Talia Wooldridge who was there before, during and after the crisis, Donald is now sharing the power of music through Music Can Heal. An incredible collective of musicians who provide soothing spiritual music at the bedside of critically or terminally ill people.

Near death and extreme brain damage can't keep Donald from being the compassionate talented man he is. All it did was enable him to reset the dial to zero and create the life he was meant to lead.

On July 23, 2013, Donald Quan announced to the world that he had repaired his brain to almost 99% of where he was prior to the attack. He has recovered his musical talent and composition skills. No, not just 'recovered', he has progressed creatively far beyond his pre-arrythmia days. As a thank you to Toronto Rehab, Donald composed and recorded an album, appropriately titled "17 minutes of Silence ", a musical expression of his new found lease on life. The CD is due for re-release early in 2014, but you  can get a taste of Donald's musical brilliance here

BRAVO!

Donald, the journey of discovery I took while researching and writing this post is one I shall never forget. It has been my GREAT honour to share your story

Creativity takes Courage

My Handsome Man is an exceptional pianist. As a teen he even made a living as a musician, but it wasn't the career path deigned for him. Instead he entered into the forefront of the IT field. It is very difficult for someone so musical to suppress that part of themselves, but he thrived in IT. He has produced other people's musical and creative works over the years and has played in some rocking hobby bands but nothing to the extent he craved. Recently he decided to hire a wonderful local musician to teach him jazz piano and is throwing himself into it heart and soul (or should I say Body and Soul?). He has dabbled in other projects over the years, but the fact he chose as an adult to dive into something creative he's always wanted to explore really inspired me. In fact, it was the catalyst to me starting this blog. I have wanted to write the book so many people have asked me to write for many years now, but have quite frankly been intimidated. Handsome Man making his musical dreams come true inspired me to do the same with my own artistic craving. This may not be a book, but it is a fabulous venue to recount my tales, my very own creative outlet and I must admit I'm loving this journalistic journey.
Handsome Man is not the only person in my life whose choice to explore their creative side has inspired me. Below are the stories of two wonderful and very different people whom I respect, admire and in terms of chasing my dream, try to emulate. I hope you'll learn to love them as much as I have!

We Be Jammin'

3 amazing women bringing open jams to a venue near you!

This Jazz Brat loves live music and I have found the best place to go for some jazz or funk is ANYWHERE there is an open jam session. Three of the best (and very different) jams in the city are all hosted by extraordinary women with wonderful tales to tell, and conveniently all on different days! I was able to get out to all three this past week and I'm still grinning ear to ear.

Daddy's Girl

 Daddy as a young man at Fisherman's Bay

A few weeks from now will mark the 24th anniversary of my father's death. Remembering losing him is still so painfully raw that I usually chose to remember only his life not his death. But in the last few years I have come to understand his death was as much a part of his wonderful affect on me as his life and parenting.

OMG its OMD, and my discovery of musical diversity through Blondie

Handsome Man, knowing Once an 80's girl, Always an 80's girl, surprised me a while back with tix to see Orchestral Maneuvers in the Dark (OMD ) at Danforth Music Hall next week. 

I am so excited! But be forewarned, its made me nostalgic!

My parents were children of the 1920s and 30s, Jazz was their Pop music. While I was growing up, Dad was always humming or whistling some Duke Ellington tune or quoting Lady Day, and Mom was always tapping her toes to something on the radio.I'm the youngest of 9 children, and my brothers and sisters are much older than I am. They came of age in the late 50s and 60s, so their music, Beatles, Stones, Cars, Yes permeated my infancy and childhood. The 80s is when I discovered music that was mine. With the foundation of my parents and siblings music I was able to be open to anything and everything musically, and discovered myself as well as my musical taste in that much-maligned decade.

Autism Moms Unite at The Iron Bridge Inn!

One of the overnight stops on the drive home from Florida with My Handsome Man was Mercer PA. A wonderful town. Our hotel was well appointed, but we thought we`d try a local restaurant for dinner. The concierge had some great recommendations and we settled on Iron Bridge Inn, located oddly enough beside a beautiful Iron Bridge spanning a quaint little river. We found a wonderful booth, completely surrounded by warm oak, almost as if we were in our own separate dining room. Its was kitcshy and romantic all at the same time. Our waitress arrived with our menus, and took our drink orders. I as usual had wine (hence days of Whine and Rosè!), while handsome man ordered the best named beer EVER!