A full plate

I am enough
Sometimes too much
Isn’t that why we’re here?
To see another’s plight and take it anyway?
Whichever way we can?

I see you
I don’t see you too
To bend and break and run…
From what doesn’t fit or conform
Into an ever growing smaller box

I hear you
I’m not listening
To the voice that races off your tongue
Or the heart you explode in your hands
Pardon me?

The shoe hangs close to the wire
Who do you trust?
If not the one who’s a piece of you
For sanitys sake
Jump if you will

Words made up
All fall down
Love and love and live some more
The faces look and hands turn
The circle never ends

Cry, till the very last light
Pour everything into the glass
Look through until it is no more
Fight all you have
Charge racing horses,  charge

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For myself

My job last week mostly consisted of carrying some bags, lifting a wheelchair in and out of a car and helping set up at speaking engagements. It was different than what my days usually look like and challenged a different part of my brain. I worked a lot on the computer, used physical energy infrequently, was sitting more and not moving around and even though I was doing things, sometimes a part of me felt bored. This was all internal of course and had nothing to do with good company or what I may have been attending to at that moment.

I like to keep moving and that’s why I love the job I have now. The kids and some young adults keep me going. I always joke that I don’t need a gym, because I’m moving all the time. That’s not true, but it feels like it.

I sometimes find it a challenge, to not be physically doing things and moving around or getting that adrenaline kick because I have so many things to do. It forces me to use a different part of my brain. Focusing, analyzing, direct communication and breathing slower. I can’t do C, before completing A. They are separate.

I do different things to train my brain. I play the hard Sudoku, read the King James version of the Bible, practice word puzzles.  Mostly, I have joined a swim class, try to jog once a day for 15 mins and have tried stretching each day.  See, I do things for myself!

 

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Always moving

I know I can

How much are you willing to push, to get the result you want? If we are treated un-fairly, we complain, if there is an in-justice, we try to make it right or are out raged, if we are failing in school, our parents say we need to work harder. Why when you only take care of someone’s physical needs and they have a disability, does no one say, you’re not doing enough?

The effort I put in to support my clients is wholesome. It’s a yearning in my heart to treat them like any other child that I meet. A lot of people say “what do you do with them” I never understand what to answer. I usually say “what do I do with who?” They explain and ask about things like care, and that’s it. When I explain what I do and ignore the care question (because sometimes it’s private) people are floored. The reason I don’t understand their amazement, is because I wonder what people do with their own kids? They don’t only provide care? And what happens when their kids don’t need help with dressing etc, you must do other things? Well, that’s what I do, other things. I mean, who doesn’t want to go out and experience the world?! Or stay home and experience the world as the case may be.

Even my clients who are non-verbal and don’t have a specific “yes/no” communication system, I know they appreciate effort. You can just tell what they like and what they don’t. How many times have I heard “he’ll use the device for the OT, but not for me” or “he’ll walk for the dad and not for her” or “they don’t like going out with me.”  You know what I say to that, TRY HARDER. Yes, sometimes the person won’t “perform”  or doesn’t want to do things. I would ask why?

Supporting the children and teens can be hard, not physical burn out hard, even though that happens too. I mean brain power hard. I am using every fibre of my being to listen, respect and do right by them. Their dreams are my command. If I’ve supported a client in the classroom or at home with school work, I need to believe they can do what I’ve set in front of them to the core of my being. If I don’t believe they can do it and set them up for success, they often won’t. And some of them don’t care. They’re going to continue to go to school, encounter the same attempts, be happy in life and give love unconditionally to those around them. There is something about rising to the occasion. If the occasion hasn’t shown up, should I still rise?

People talk over my clients heads about what they can and can’t do. It makes me angry. We are so concerned with facts, science and check lists, that we can’t shut our bodies up enough to truly watch and listen to those we are hired to support.

I challenge myself and others as support staff to stop and shut ourselves up. We can talk and do a lot of things without assistance. Let’s give those that need us to understand them the floor. For any wish they may have.  With everything in our beings.

This young man thought he could never be near the water.  I knew he could.  Trust me, I got beat up and sometimes had to run (for fun) to get him there.  But once there…amazing!

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Fifteen

I injured myself in a minor way yesterday, but lost some skin and may have needed a stitch or two (which I didn’t get).  My paramedic friend asked me “when was the last time you got you tetanus shot?” I said “probably about fifteen years ago.”

Fifteen years ago today, Stephen would’ve been alive.  At this very moment, he would still have been breathing and smiling and loving.  Even if I don’t think about that day often, I can remember it like it was yesterday.  Sitting, eating breakfast, expecting my mom to call to say she made it to the respite home he was at and will be home with him shortly.  The phone rang, something wasn’t right, it took too long, was she late, did she make it there.  My mom didn’t have a cell phone at the time, she does now.

Mom: ” Hi Marj.”

Marj: “Hi, you made it!”  I wondered what took you so long.”

Mom: “Marj, I have to tell you something.  Stephen’s gone”

Marj: “Gone where, pretending I didn’t know”

Mom: “Stephen’s dead.  Come and meet me right now, they will pay for  taxi for you.”

Marj: As I balled and stumbled around the apartment “damn straight they will pay for a taxi.  How the !@#k did this happen?  What did they do?”

Immediately I went into fight mode.  I wasn’t sad in the least, I was mad and was ready to find the people responsible.

When I got there, he was in bed covered with a sheet.  I said goodbye, which wasn’t real at all.  I was forced to say goodbye to my dead brother, I hated it.  I didn’t even kneel.  We were then sat in  separate room, away from the commotion.  There were paramedics, police officers and we waited for a coroner to show up, who said it was natural causes.  I’ll show you natural causes of death.

Their staff kept talking to me, trying to make me feel better.  It’s a wonder that someone can’t read, no eye contact, subtle to no head shakes and body posture as ‘shut up.  stop talking.’  I just wanted to get out of there.  What were we going to do now, with all his stuff, who would we care for, how would life ever be the same, ever?

We called friends to come and get us.  Cheryl, she was the first to arrive.  She sat with my mom and is just wonderful.  Dave our associate pastor took some of my brothers belongings home for us.  His son Brad drove me home in his car, it was yellow at the time and a, I can’t remember the type.  I know I called it Mello Yellow, because of the loud engine, but cool vibe.

Marj: “I’m not going to school tomorrow!”

Mom: “You don’t have to.”

Marj: “I am going to figure out what happened. there is no way he just died.”

Mom: “Mmhmm.  You’re right.:

At the time we were both paralyzed.  She never said so, but she went with me to every meeting I set up and backed me up while I yelled, took notes, asked really tough questions and put together time lines like a CSI agent.  I finally got it, a confession to the truth.  “One of our staff fed him by mouth.  She didn’t read his file to see he had a g-tube.”

I believe I may have in to someone I never want to be, I wanted to see them suffer, make them pay.  There’s no way he let someone get that close to his face and not push them away.  He didn’t like eating and had the strength and arm control to hit people, trust me, I know.  I brought up force feeding, but they denied it.  I also wanted a name.  No luck in that.  But, I did hold them prisoner in that room for three hours asking for one, I hoped they knew what they were in for.

We wallowed for months, well a year.  I dropped out of school, we were bored and I hadn’t found soul friends yet, that were for better or worse.  Don’t get me wrong, I had friends, my youth group was a big source of friendship, but there was still something missing and it wasn’t Stephen.

Diane a wonderful friend to us, helped my mom clean out his room. It was the best gift anyone could’ve given us, I don’t think I could’ve done it.  We set out to move, because now we were over housed, three bedroom and two people.  Everything had become so impersonal and only necessity based.

Fifteen years and this is the first time I am telling this part of the story and some don’t even know the half of it. I still meet people who ‘have heard’ or don’t know and they say “yes, I understand.  At least he is not suffering anymore. ” Or “he was going to die…he had one of those, I forget what you call it conditions.”  Believe it or not, not everyone that has a disability, dies because of their disability.  It can be age, accident or even someone’s fault.

Never give up if you believe something in your heart, always fight for it.  He was worth fighting for and I know the people that were on the other side figured that out pretty quickly.

 

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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.

Listen!

If asked someone a question, anyone.  The question was a positive question and 8 of 10, would get you a “yes.” For example, who wants Vanilla Ice Cream for dessert? (asked to children)” Now, you’re the askee, yes, I’m asking you a question.  Hold on, a few rules.  You can’t speak and answer, you can’t shake your head yes and your arms must stay down at your side.  “Do you want a $2000 shopping spree?” Now, how did you react?  How did you show you wanted the shopping spree or were interested?  Using your eyes, posture, smile?  This is how a lot of the kids I support respond, with their whole bodies.  And when they do, wether they say “yes” or “no” I respect it as language and conversation.

Why am I telling you this?  So often, the kids I support, are over looked for what they really understand or can communicate.  Trust me, I watch it happen.  As the advocate, if I say something, it has to be in the right way, to either get child involved (proving they understand) or, to get the person to understand, but not hurt their feelings or step on their ego. Usually it’s that the child has to show their skills by responding, positively, they’re not aloud to say “no” and I frame it to show why it’s communication then the other person begins to adapt.

The other day, I was getting my friend off the school bus. Two teachers, from the school he spent one year at, walked by.  The two of them came into his space, tapped his tray and yelled “hi Jason.” Jason flicked his head up against his head rest and looked at the sky.  He was listening to their voices, to try and remember them.  I saw this and said “I don’t think Jason remembers you, could you reintroduce yourself?” The teacher replied “He remembers me, I was in his class.” I look at Jason, who is showing that he has no recollection of who these two women are.  I say “Jason, do you know who these two ladies are?” He promptly shakes his head no. When I ask them to reintroduce themselves, they pat him on the head, refuse to and walk away.  Seriously?!  Don’t touch me if I can’t even remember you.

The worst was, his response was ignored, because it wasn’t desirable to an ‘able-bodied’ person.  I have quite often heard teachers say over the years say “so and so always says yes and is so agreeable. Why wouldn’t we believe someone that answered clearly for themselves?  Why wouldn’t we trust in the fact that they can make a decision, no matter how small.

As an advocate, I have learned to breathe, say things with cherries on top, so as not to hurt someone’s ego and to keep my mouth shut if someone is trying and doing their best.  The thing that gets me, is the person I’m supporting, that I said I’d be there for, is looking at me, asking me for help to communicate.  But, no, I can’t step on someone’s toes.  I’ve been known to be a bit too passionate about the subject and do some toe stepping, which my clients are usually laughing at the end or giving a “ya” with attitude, wether they can speak or not.  I have been told I am not communicating the right way with someone or how to read their “yes” and “no” and I’m not offended that someone told me.  I’m thankful, because now I can communicate with them properly.

Rarely do people understand where I’m coming from.  That it hurts my soul when the person I support is mis-understood or mis-represented, while trying hard to be understood.  I also don’t know where ot comes from, it’s built right in.  And sometimes I say the wrong thing, can be ableist or am trying too hard to to get someone to understand something, my client could care less about.  But, that’s what makes me sought out by parents and healthcare professionals and have some of the strongest staff working.

We all speak non-verbally anyway.  Way more than we do verbally. you just have to look for it.

 

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.