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.

 

Sibling (James)wp_20150722_007

 

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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.

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.”

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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.

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.