What they mean to me

In the last couple weeks, I have had a client more days than usual.  He’s slept at my house on weekends, I’ve brought him to meetings, gone out for dinner and brought him to parties that I’ve attended or brought him to friends who have invited me over.  My staff, Sallyanne, has also brought him to things.  We don’t pay much attention to what people think or comments that are judgmental.  However, I find myself explaining who he is, that he’s a friend or why we are together.  I’ve even gotten “is he a client?” Or “what does he have?” in a whispering voice, that he can totally hear.

Let me clear this up for you.  When I show up with anybody, anybody, the only thing that is your business is what their name is.  That is the only question you are aloud to ask me and I will in turn ask them if they’d like to share the name.  Hopefully natural conversation will continue from there about life and how everyone is. 

Bringing any of my friends/clients somewhere isn’t a burden, annoying or inconvenient.  The only thing that is inconvenient is having to explain why they’re with me, what they have (yes people ask), how hard it was to get where we’re going or how nice it would be to have time to myself.  I control my own hours, where I am when and who’s with me all the time. So, having time to myself is completely up to me, even if you think it isn’t or that I don’t ave enough time for myself. So, assuming I’ve been stuck with someone is an unfair judgement.  Maybe I’ve chosen to have them over to my house or be part of my life.

Maybe its my fault?! Quite possibly after a long challenging day,  I’ve said something that makes someone think it’s hard to take care of some of my friends.  Maybe I’ve led you to this conclusion.  If I have, I’m sorry.  I love my job and my clients. Those families mean more to me than you could ever know.  Yes, they have a personal relationship with me, that goes way past care giving.  I’ve met the most interesting people, have some of the best friends and see the world differently because of my job, my friends, my brother. So while all things in life can be less than fun, amd I say something that makes it sound tedious, take it with a grain of salt. It’s not always easy, but I wouldn’t change it for anything.

The child I’m talking about, loves to go out to eat.  I’ve taken him to many restaurants, but have begun taking him to my local Italian spot a few times.  I love taking him there, everyone just says “hi.”. They ask him how he is, smile with him and even make jokes with him.  They quickly pick up on his yes/no, that is non-verbal and make him feel like he’s included.  I love it!   Being with him and any of my friends/clients, brings out the best side if me.  You should want to get to know them.

So, the next time you see me with someone who uses a mobility device or has a disability don’t assume you know who they are to me.  I don’t support everyone, they could possibly just be a friend.  Include them and treat them as you would anyone.  Don’t know how, start with “hello.”

via WP for Windows app.



“Don’t touch that!”

“We call her (insert slightly insulting name here.  Nosy Nelie)

“Turn around” x3

New staff says “I think he wants to stir.”  

Old staff tries and is unsuccessful because she is holding the bowl and trying to hold his hand and stir.  Hand stiffens up due to increased muscle tone and wanting so badly to help.  “He doesn’t want to.  We just show it to him and tell him.  (Baby voice) Look, we’re stirring.”

“He can’t do that”

“She doesn’t like to move around. She just likes to sit still.”

Am I the only one that gets upset by these things? I know everyone supports everyone differently and has their limits. What I don’t understand is why it is so hard to put a little extra in to make it worth it for someone who is truly relying on you.

When I train staff, they have to be up to a certain standard. If they can’t treat my client the way they’d want to treated if the roles were reversed (think about it), I don’t hire them. I can’t teach them that, it comes naturally. Treating someone as your equal.

I have had to be the boss or tell a client they’re not aloud to do something. It also doesn’t mean I won’t help them cook in the kitchen, talk to the eighteen year old like he’s four or give them rude nicknames when they’re just curious about the world. 

Other people see me through my client, and if I am not the best reflection, people get the wrong idea. It’s hard to change minds, so its better not to falter and be our best selves, especially for our clients.

I talked with someone today and they were talking about the power of positive thought and prayer. It got me really thinking, what if we all did this, and even celebrated each others successes and smarts…what a wonderful world this could be.

I meet many different people, from all walks of life. Some Christian, Muslim, Atheist, non religious, spiritual and those that celebrate the earth.  I hope to see Love at its highest in my lifetime.  I don’t know that I will.  I will be practicing positive thought and prayer all my days.

Ebbs, flow and death; write now

…someone asked me the other day “what do you do and how do you heal when something bad has happened.” In my humanistic, arrogant way, I answered “I book clients, and get out of my house and spend tine with friends and…until it hurts a little less.” I’ve been thinking about that response over this past week. What did I do before I do before I had all of those ‘coping’ strategies? When I was a child, how did I process death? I write. Or better yet, I wrote. I stopped writing. I know why I stopped writing. However, I don’t remember why I never started again.

Now I blog about my work, the kids and teens I love and support, the families and funny things. But, I used to write poetry, stories, songs and journal all the time. I’ve heard this saying “it doesn’t matter why you stopped. It is never too late to start again!” I believe both are important. The reason you stopped and what brings you back to it.

Follow me. Can you see me? I am hiding amongst the others. I’ll wait for you. My breathe as hot, like the light. Can you see me now? see me. See me. See Me!
When I am gone and you can’t find me. I will be in the trees, in the light. Coming back to it is lovely. Light, grace, love and honour, follow me.
No fear. Be still. Listen. Love. I will always be where you find me.

Marj, the peot

Ebbs, flows and death!

This life has been one heck of a world wind in the last few months. Good things mostly, but the shitty things slip in to keep me on my game. Not my game, but, I am challenged by the shitty things. They teach me how to discern if something is worth my energy, learn how to connect with people, seeking deeper into myself, finding out what I’m capable of and talking to myself to bring my mind to a good place of compassion in every situation.

I seem to experience good and bad on a pretty regular basis, as in, anywhere from 1-10 hrs apart on a daily basis. “How are you?” Is slowly becoming a loaded question I hate and don’t want to answer because I don’t know how.

A good friend died last week. My heart is broken and I’m really feeling the loss. I think about her family and get little sister, who part of this remarkable family. Life, once again shows me what’s really important. It is unconditional love. I’m serious. I’m not trying to convince anyone here, but, I am, putting it out there. If you don’t love anyone or have someone to love you, that must be lonely…

Not my house

Have you ever lived somewhere different? Not a different country, but, in someone else’s home…their not home? I have. In fact, last September, I lived in one different country, two different cities and one different riding, all in someone else’s house.

New York was the best. I got to sight see, while my client was at school. That being said, I ran errands, had Skype meetings, worked on my laptop till 2a and wondered how everything was doing in Toronto. Life went on as I knew it. New York is so much like Toronto too, it wasn’t that hard to continue my regular routine. When I flew back to Toronto at 3a, I slept in my bed one night and headed out at 8a the next morning. A whole five hours in my house. No unpacking necessary.

My favourite is coming home. It is not too long that I am bored of my place again though.

Now I’m finally home. I thought, woo, November will be nice to be home. Then I remembered…my best friend is doing a school placement away from home that will be good for her professional career in the end. Guess who’s taking care of her six year old daughter for three weeks? This lady! Once again, not home for prolonged periods of time.

There was a small break in the beginning of the year. It lasted one month and I thought “how nice it is to be home.” I was tired with other things, so, came home every night. But, wasn’t feeling full in my own dwelling. Soon, the calls began to come in for overnights and vacations. Wooo hoo, it meant people were taking a break after the March Break.

It also meant packing my bags and keeping them somewhat packed with essentials.

Currently, I just lived in three different houses in fifteen. I wasn’t taking care of anyone specifically. I did become part of wherever I was though. I became an auntie, big sister and cousin, it’s like having my own children.

I will soon be moving to a camp for a month, to spend different sessions with different children. It will be exciting to meet new people and somewhat bitter too to be away from home and have things change.*

All in all, this home on earth, is not really mine. Even the one I pay for has stories without me. If your travelling or moving around “Peace be da journey.”

*Some things and people stay the same, some don’t. Keep souls and spirits alive in all you’ve known.


When I was young, I did not like camps. It was a combination of me not liking them and my mom not having enough money to send me to one. Me not liking them came first. The cliques, the boy vs. girl, the bullying and not to mention, the annoying counselors. I spent my summers hanging with my mom and brother, playing with a few friends, going to concerts and sometimes playing video games till my fingers were sore.

Now that I’m an adult, I spend my summers at camps, ha.  Sallyanne, my right hand woman, and I take three young ladies to a camp that is for children and young adults who have physical disabilities, although they accept people whom have developmental disabilities too. It is beautiful and ruins other camps that you’ve been to. It is right on Rideau Lake, has every activity any other camp would and, is completely accessible. The staff are wonderful! They hire a lot of international staff, which is so nice to have people from different parts of the world.

What I do is assist my client in personal care, but more than that, during programming, to be social, and with all the secret things that parents do to take care of their kids that no one else can do. Mostly, I provide the extra support that camp staff can’t because of intervention and the ratio of campers.  That’s right, fourteen hour days, with breaks in between. I am so over joyed and fulfilled at the end of the day, that I’m always ready to do it over again.

This year, I did two ten day sessions, with a four day break, a cottage, a dirt road and lots of car travel in between. I had the best time and watched my young adults, transform, make friends, let others help them, laugh, miss their families and truly enjoy being a kid!

This year I took one young man on my own. This was just the first of two sessions I would be at camp.  It was my first time on the boys side, I usually take girls. The young man I took has a physicality says nothing about his personality. He can’t do anything without help, but has a sharp mind and a mouth that he uses to tell you all that’s on his mind from politics to history to inappropriate jokes. His body (as he refers to it separately from himself, dualism) is affected by Dystonia; random un-choreographed movements due to neurological control inhibitors sparking off, leaving him with little to no control over his body. This can affect any muscle in his body, including, Trachea, legs, arms, vocal chords, sometimes leaving him straining to talk, swallow food or completely twisted into a pretzel. He tends to think about danger a lot, because he can get hurt so easily. For example, if I am sitting with him in my lap and there’s a wall near by; His eyes see it and no sooner does he see it, he starts thinking “oh no, I’m going to hit that wall” his brain takes charge of his thought and throws his body into extension, trying to hit the wall. Its a battle, because he doesn’t want to hit the wall, is trying to tell his brain not to hit the wall and the more he says no, the more his body arches towards the wall. This means quick reflexes, being super observant and thinking the way he does. Any hard or plastic chairs or tables, we keep him away from, as his body reacts to it.
So you can imagine when I said I wanted to take him sailing in a small plastic boat with little room for legs, no straps and a bucket seat made out of tight mesh, his parents said “no.” He was indifferent though. I have done some pretty amazing things with his body and connected mind power. A boat meant we were stuck and the only thing around us to make it better was water. Him and I talked and talked and talked about it. I convinced his parents, who have the utmost trust in me. His big worry was that, if we his body was completely unresponsive to my hands and intervention and he was in full extension, he would hurt himself or pretzel under something and get stuck. We finally decided, that if all went completely ary, we’d bail out of the boat and just float until a nearby motor boat came to get us. There are staff in a motor boat that watch us, help if we need, bring us juice and water or bail boats if they have filled up with water.
When we first got in, I explained to him where everything was in context to his body, had my arm tight behind him and padded the boat with towels from his sight lines (sometimes, outta sight, he doesn’t react the same way). Big surprise and not so big surprise, he kept his body calm and was able to stay still. I was able to intervene when he needed me to fix a leg or head and we talked for two hours about life!!!

That is just one of my favourite parts of camp, giving someone the chance to do something, they never thought they could.