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.

Camp

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.

Learn more

“Hi, my names Marjorie and I am a D.S.W.” I say these words as I realize, health care workers get a bad wrap and aren’t recognized as educated people (in some situations).

I struggle sometimes, as I know there are people out there with degrees, diplomas and certificates within the health care sector. We give these folks an assumed intelligence assigned to these things, depending on the profession. I have a diploma, I didn’t always. I’ve had it for five years now, supported people for twenty-one years independently and have owned a small business for eight years.

There still sometimes is a funny feeling in the pit of my stomach, when my suggestion gets by past for that of someone with a degree and who is a professional. In my work, parents are also forced into a world of ‘if a doctor, therapist or other professional with a degree didn’t say it’ you’re wrong and not doing what is the best for your child. However, most parents are doing what is best and what they know.

I get to know the families I support pretty well and I know their children on a level not of a parent or professional, but almost like a best friend. Over the years I have been asked many questions and my opinion about different things. I know that it is valued and appreciated. I know that some things are above my pay grade. I know that we need professionals so people can turn to.

I know it’s only healthcare and I’m only taking care of someone, but I am a professional too. I strive to be the best that I can be for your child and family. When I give advice it is of many factors, knowing you, your child, what it’s like to live with someone who has a disability and much more.

I suggest you follow you’re gut, it’s usually right!

DSW

Today I am to running some errands for my mom. If you know my mom, she rarely has me run errands. She also never get’s mad at me if she asks me to one thing amd I forget. The only reason I’m running errands for her today, is because she’s not here to do it herself! Otherwise, I’d be out of a job.

As I to pick up medications, go to the bank, etc, I am brought back to these old neighbourhoods. Places we used to frequent, places close to home, in our North West apartments…places we with Stephen. I think about him everyday, but thought about him a lot today.

Remember when we walked up that hill, or missed Wheel-Trans at that door or I took the last dime from my mom because we waited for hours and I wanted gum. He’d laugh at me and watch as I would run around, talk and try to entertain myself when we went to the doctor’s or walked to pick up his meds.

He is in my thoughts always, probably more than people know. My friends who didn’t know him, feel like they did, because I still talk about him.

If you’re thinking about people, let them know. If you love them, tell them. If you miss them, do something you used to do to remember them.

Sibling

Good days and bad days

You know what I’ve learned. That no matter how much a person has gone through or how much they complain about their problems, they are allowed to. If my situation is worse than yours, it doesn’t mean you should give up what you’re feeling. If you complain about your shitty situation, it doesn’t make your problems any less real. People might get tired of listening, but that’s another story.

When I have sucky things happen in my life, I have a handful of friends I can talk to about it. I try not to take advantage of it and complain too often. I also rarely have things to complain about, and then there’s life. Sometimes when others complain to me, I feel like I can’t give anyone anything, because I have stresses of my own. I’m sure we all feel this way. Sometimes, it is easier to say “what can I physically do for you?” without listening to what led that person to needing help.

Most people take vacations to get away; I stop calling, don’t answer an email or phone calls from someone I don’t have anymore to give to. Or, honestly, I’m just tired of listening to your problems, I have no problem saying that in person either.

That is part of the reason I love front line work with the kids, teens and adults. They don’t complain, they don’t tell me the shitty parts of their day (sometimes), they don’t ask me about others or push me into a negative space of taking about people. They also only demand of me, what I can afford to give. Everyday is a good day when with them, even the tough ones.

However, when people ask more of me than I can give, or I’ve given tons and can’t give anymore, I’m stuck. My down fall, people I care about, I will do anything for them. Even be there for them over and over, while teaching the hard lesson’s of life, giving tough love and sometimes having friends ignore me for days because I have told them the hard truth. My up fall as it may be, I am tough, I can be mean and I have seen a lot, not everything, but a lot. My mom always taught me to take time to feel sorry for myself and someone else, and when I’m ready, move on and do something for myself and that person. So, yes, I sometimes have a hard time feeling bad for people. People that I think have picked their own circumstances that is.

How would I know anyway? Who am I to dictate if your pain deserves my sympathy? And that is really what we want when we are having a tough time in life, someone to sympathize with us, listen to us and get on our side, even if we’re wrong.

So, I may look out for supports and friends to listen to me, but I will keep being there for people as much as they are there for me. It is not easy, but, sometimes we have a greater purpose in life, that we are not privy to yet. We have to go through the hard steps to find out.

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Hold on, wait for me…

So, I’m usually asking the kids to wait for me to catch up or hold on. But, I have a new client, who is so fast, my legs don’t get a break. Unless it’s a red light. He walks at extreme speed and I’m talking my body into a super fast and not ‘normal’ walking pace. So far it’s going well, but I never work out after supporting him.

His waking is usually includes a skip. Sometimes, he’ll run, to get everyone out of the way and make sure he has enough personal space on the sidewalk.

Things I’m thankful for, he stops at stop signs, roads, alleys and is weary of cars and danger. On the other hand, stands on the yellow strip to watch for the subway, walks about ten to fifteen feet ahead of me and can get upset if I show any sign of worry or anxiety. Really upset. We had a fight (I stood there while he fought me) on a corner one day for twenty minutes, before hailing a cab and encouraging him to get in.

How do I reach this state of calmness as he runs fifteen feet a head of me and looks over the subway tracks? I’m not sure. Like Lady Gaga says “I was born this way.” His world can turn upside down if I’m not calm. So, I guess in his way, he asks me to. He needs me to.

He is also brilliant, funny and has a great imagination. That makes it a lot if fun for me as we write this story of adventure in the privacy of a public subway train. He is in private, but I am not and neither is anyone else privy to our story. A lady clapped for us once. He was in a good mood that day, so said “thanks!”

We all have a purpose; so glad I found mine.

Marjo

It’s not mine con’t…

Once I started working, really making a go at this caregiver thing. I worked with a young man who to this day has stolen my heart. We are connected in a way I don’t even understand and he was the best comfort after my brother had died. Mind you, he can’t do anything. He is fully dependant, has a wonderful sense of humor, loves blondes and is one of the best people I know. HE definitely reminded me my body is not my own!

In our first year together, he coughed and vomited on me, demanded to sit on my lap or beside me, didn’t let me leave the room (by coughing or crying), needed to be lifted (he wasn’t light) and cuddled with me when he was tired and frustrated with his own body and what he couldn’t control. Can you imagine not being able to control your own body? I’d take hostage of someone else’s too.

These kids. My kids. They need me in the most complete way that one person has ever needed another. I am happy, honored, even exhilarated to be there for them.

As my friends grew up and began having kids and getting married. I got to meet new people to love, share with and get good hugs from. My friends friends kids, some call me Auntie, are awesome! I miss them, have pictures of them in my wallet, relish the time I get to spend with them and am excited to watch them grow up. I have babysat, fed, bathed and taken care of these children. Cuddled with them, rocked them to sleep and even taken care of some of them when their sick. I am so lucky to have them in my life.

My body is a force to be reckoned with! It is strong, faces adversity, patient, compassionate and lends gives itself to others everyday day. I just hope my heart can be those things all the time. Thanks be to God for this body.

Maj