Advice

I had someone give my client and I advice the other day. Or a mere suggestion as she called it.
“When you feel pain, just breathe and the pain will go away. You (Marjorie) should remind him.” This does work sometimes, but, not always and more times than not, it doesn’t work within the first Twenty seconds of the spasm, or doesn’t work at all. When he spasms, all muscles are involved, including swallowing, lips and trachea, rib cage, everything. His lips purse together shut (breathing shallowly only out of his nose), his throat stiffens and his dystonia holds him in a un-choreographed movement, one that most bodies are not familiar with. So, he does his best, and once he has his breath back, tells himself to breath, till he somewhat relaxes. When I told her this along with my client she said “as long as you remember to breathe.” I looked at her, my client looked at her, he said loudly “I do breathe” and I said “don’t disregard the things he can’t help.”

I give a lot of advice. Most would say I’m bossy. Some may say I’m particular. Few would say I’m pushy. It’s okay, I’m all of those things. When it comes to advocating, yeah, I’m not so worried about the other physical able person, who can usually adapt.

I’m learning everyday how to better give advice and how to have more tact. Some clients like when I’m a little but rude or give attitude, because that’s what they would do. Others prefer to have a discussion that is clear and concise. Either way, all my clients don’t like getting advice on how to “better” their disability. It’s a bit of an insult to their sensibilities, especially because they have lived their life longer than you have.

On the other hand, I like getting advice as a personal support person. It gives me ideas and helps me better the way I support anyone or provide attendant care. Usually this advice comes from the person I support and that the best kind of advice.

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Sorry, not sorry

Today on International Women’s Day, I love that there are women that have come before me that have changed so much.  I am able to work, own my own business, not have children or get married if I don’t want to, wear pants or shorts if I want and much more.  As a black woman, I can go to whatever school I want, use and share the same things as any other human, can sit wherever I want on a bus or in a movie theatre and much more.  We still have a far way to go as women.  We still many minds to change as black women.  No matter, we are power houses first.

Some places in the world today, women went on strike.

This is a great idea.  Here’s why I would never feel like I could wholeheartedly participate in something like that.  I work in healthcare, social services and education.  This is a career that is dominated by women.  Some of us are natural care takers, and are able to handle being close to people through their different physical needs.  If I went on strike, I would be doing a dis-service to the people I support, who (some of) don’t understand what a wage gap is.  Don’t know that they should treat me differently because I am a woman.  Don’t discriminate against me. And, love me more because of the woman who I am!  So, I’ll strike on jobs that don’t involve my clients, but, they are my allies in the day of.

I am a hustler is some senses of the word.  My days change everyday and I am challenged to the core of my being at times.  I try to be my best self when I can.  I walk with my head held high, smile at people on the subway, laugh loudly and treat people the way I would want to be treated.  I also am loud, can get angry, make assumptions, make mistakes and have cut you friends off that don’t fit in the story of my life anymore.

As a woman.  I join the boys teams.  I try not to judge other woman and did my best to uplift them, even when I was judged harshly sometimes.  I kept my guy friends in check about how they should treat me and other women.  I call other women out when they wanted to use their womanizing for things less than their worth.  I take care of many children unfailingly.  I don’t pay much mind to what others think if it’s negative.  I give compliments to strangers.  I volunteer at places that make others shake in their shoes. I stare confrontation down and come out on top on the other end.  I say thank you when complimented.  I loudly let men know how to treat me, if they tried treat me as less than human.  I laugh at myself and love everything about myself.  And the things that I don’t, I learn to love and become comfortable with.  I am still learning.

No, I don’t apologize.   Being a woman is what I am and I am here to stay.  I strive to be like many wonderful women before me and the ones that I know.  If I do things in a way that  you strive to do, then, thank a lot of women before me.  Being a woman is not for the weak at heart.  And, if men don’t get it, I usually start talking to them “a day in the life of” and once I see the blinking and shaking, they remind me why women are important.  That’s right, in my own subtle way, I want to change minds about how amazing women are.  Subtle, yet impacting others.

So, as I sit here, finishing invoicing, emails and panning a summer (all things late) I thank the Lord for the woman that I am.  The woman that shared a hand hold with a blue eyed boy today, that traveled our of town and back before 10a, that entertained a young lady into eating her dinner, that had a heart with a friend to give him the assurance to keep going and that powers on.

Rules

“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.

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.

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