I won an award

I stopped answering certain questions a long time ago. I get some repeated ones, some rude and some that are just none of your business. They often come from a stranger, when I’m with a client and/or friend who has a disability. What I don’t understand is, what difference would me answering you make to your life? It feels as if it would only be you knowing something about someone you don’t know, that tells you nothing about who the person is.

Here are some choice questions (from adults):

-What’s wrong with them?

-Why do they need that?

-Do they have Autism?

-What is their savant?

-Can they understand?

-If we’re in a restaurant. Do you want me to bring your food later (assuming I’m feeding my friend)?

And one if my favourites

-What do they have??? 👀👀👀👀

Really?!

When out with friends that I don’t provide any paid support to, it is very embarrassing for them. The assumption that all didabled people go places with a friend so they can help them. People ask me instead of them, which is also rude. It’s something they constantly fight with. And, truly appreciate when people recognize it and do better.

When with a client/friend, wether I am getting paid or not, it is incredibly frustrating. I used to be rude and say “none if your business” and quickly dismiss people. I then used the confidential road, hoping it would shut people down. It didn’t. So, I’d just revert back to “it’s none of your business”. About 20yrs ago, I decided to have discussions with each person. Find out what they’d like and how I should answer. Everyone was different and most took glee in that I was rude or, didn’t spend much time on the person. A few said I’d like to tell the person, and have a further conversation to engage them and show them my disability isn’t all I am. For the ones that didn’t want to say, I’d politely say “we don’t answer that question”.

I’m now in a very different role than ever before. This morning I had a fun conversation with a stranger, that made me reminisce the old times.

Waiting for wheeltrans to arrive, so my friend (let’s call her Jill) can head out for the day.

Stranger: “HI!”

Me: “Hello” Go back to chatting with Jill

Stranger: “HI JILL. HOW ARE YOU? HOW ARE YOU? HEADING OUT FOR AN OUTING TODAY? GOING TO SCHOOL? Does she understand?” (Yes the caps are because of how loud she was shouting)

Jill: Looks at her with a straight face. Looks at me, reaches up and smiles.

Me: “She goes out everyday. Yes she can hear you and understands. We’re having a good morning. Jill, yes, no?”

Jill: Claps and smiles for yes

Stranger: Turns away, but is watching us out of the corner of her eye. Flips around dramatically “What does she have?”

Me: “We don’t answer that question. She is very happy and likes going out”

Stranger: “She is your charge?! You must know?!”

Me: “I do. You don’t need to. Feel free to ask other questions and I’m sure she’d be happy to chat.”

Stranger: “Jill should have someone who would want to share things about her.”

Me: “I’d be happy to share other things that are respectful to her and who she is. Her disability is not something you need to know.”

Stranger: “YOU ARE THE RUDEST GIRL EVER!”

Thats it. Thats the award I won. Being the rudest girl ever. She left after that. Honestly, I went back to chatting with Jill and gave this person not a second thought…until now. The idea that I’m rude for not telling you personal information about another?! We’ve really screwed up as humans. Things need to be ‘normal’ and someone’s disability makes them no different, doesn’t make them my ‘charge’ and doesn’t mean they do or don’t need me. This doesn’t come from just school integration, inspirational talks and inclusion. Those things may make someone tolerant, but not always fully open minded as everyone sees those things differently. There needs to also be a refusal to name someone’s disability to explain who they are, why they did something or how they’re doing the thing they do. Or, a precedent to alwas speak respectfully and honestly about your relationship with the person who has a disability. Lead my example. That’s what I try to do. Unless I don’t need to, and they lead themselves!

Win or lose

Respite is the core of my being. Serving families and supporting children who have disabilities is something I am very fortunate to do. Getting respite at home is often ignored by government, among people who don’t have children with disabilities or amongst people who have never needed to take care of another person. People don’t understand the word Respite, even when I explain it or compare it to something else that is completely different, like babysitting.

When I started my business and even now, people tell me how much money I’ll make.

I work within my business. So, I provide respite too. It looks different. I create programs, activities, opportunities and outlets for my clients. Respite means so much more than just watching someone. It means, seeing everything through my clients eyes, listening to what they want and creating a world where they can do what they want. For example, one of my clients likes comics and figurines. So, it may be respite for his parents, but for him it means a trip to the store, where he can spend as long as he’d like.

It takes me close and far, I’ve travelled with families, take care of kids while their parents are out of town or at work, have been by their sides through sickness, surgeries, laughter, broken relationships and truly become part of the family. I get very close to my clients and they truly become friends, paid or not.

If I’ve lost a client, or I’ve gone to a siblings wedding, people talk about how it impacts my business. “The loss of a client? How will you make up for that?” Or “you went to his sisters wedding? Were you working? Oh, you weren’t, isn’t that weird?” One, I’m not sure why its anyone’s business how I run mine. I never started a business to make money and don’t use my clients vulnerability to get anything.

A parent loses out if I can’t provide respite. If I can, it’s not enough. If it is enough, they still have a child with a disability and are figuring out a challenging world filled with ignorance. And on and on. Theres no winning or losing. Either way, it’s hard. And maybe not all of it, but parts if it. And, it changes throughout the days and your life.

I started a business to provide a service that was unlike any other. I wanted to perfect a skill of understanding someone else, listening with my being and loving someone for who they are. Is that such a bad thing? Well, other business owners may think so, banks may think so, my accountant may think so, but, I don’t care. This is my business and this is how I run it.

My friends are part of me. They pick me up by making me laugh and appreciate things. It is a reciprocal friendship.

DSW

Wrong

You know when you thought something was something, but it wasn’t that thing at all?  Like a date for example.  You thought it was November 6th, 2001 and find out years later it was November 6th, 2000.  Well, that’s me.  My brothers death was in 2000, not 2001 as I thought.  When my mom said it loud, I even had to look back in my papers to make sure.  At least it wasn’t my age, that would’ve been embarrassing.

So this year makes it eighteen  years.  Eighteen years since he’s not been with us. The interesting part, is my year counting was correct.  I posted last year and I said year seventeen.  I must’ve subconsciously wiped out the the rest of 2000 and most of 2001 to come to the conclusion I did.  Or I stored the date and anniversary in two separate parts of my brain and they don’t talk.

It didn’t really dawn on me, what I was called to do, until Stephen died. I had always wanted to be a teacher.  I was dissatisfied and dissapointed with my teachers and the way they taught and expected everyone to learn. Or, because I went to school in a rough area, a lot of teachers were jaded and acted as they didn’t care.  Not towards me, but towards others.  Or just oblivious and had made the wrong career choice.  I remember reading a report card recently from my grade 6 teacher.  “Marjorie is a wonderful addition to the class.  She’s smart and always tries her hardest.  She skips a number of days of school and this affects her grade.  Even though she does all the work required.”  Under that was a message from the principal. “Pauline Richards Marjorie’s mom comes into the school once a week to discuss the bulling that she encounters from other students.  She has said Marjorie doesn’t want to be here.”  See what I mean, connect the dots.

I wanted to teach the way kids learnt.  I wanted to go against the grain. I wanted to advocate for people with uniqness and differences when it came to learning.  I wanted to spread what I had learned from  my brother, my mother and my teachers mistakes.  I had finally decided to pull up my boot straps.  People had given me chances to learn the way I needed to and I was going to work hard.  I was headed to University.  I had no idea how, but I was.  Then, one quick swoop, and he was gone.

My plans took a turn.  I did nothing for a while.  After I dropped out of school, I literally did nothing.  I sat around a lot for about a year (only supporting a long time friend).  Speaking to a friend one day(about ten months later), she said I should pick up hours and provide respite.   She introduced me to Max and he changed my world.  He shook me up and continues to this day.

That’s how I based the time line, off meeting Max.  He must’ve shook me up so much, I forgot about the sadness of that passed year before I met him. He had a huge role to fill and so did I for him. We were set in who we were and nobody was going to change that.  He reminded people in a more gentle way than I did. I remember telling him I was going to be a teacher.  He laughed and then grimaced, which meant “no.” I asked him why and it came down to that he thought I was going to leave him.  I said i would always be his friend.  I called him a Prince and he acknowledged that I was a Queen.

Every year, my brothers death still gets me.  It empties my feelings for the day, makes me very boring and blah.  I laugh, but quickly go back to frowning, my head is a maze that I don’t want out of and it feels like I’m outside of my body, watching myself.  Every year though, it makes me thankful for people like Max.  Who knew and gave me me what I needed, exactly when I needed it.  Forgetfulness is my fault.

Sibling

 

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Dear Dystonia

Screw you!  You are nothing but impossible to be around.  There is no break from you and my body tires so hard to be there for my friend and the harder I try, the more you carry on with your stupidness.  This is your definition:

Dystonia is a movement disorder in which a person’s muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body. Dystonia affects about 1% of the population, and women are more prone to it than men.

My client has generalized dystonia.  That means every part of his body is affected.  Blepharospasm affects the eyes and face, Cranial dystonia affects the head, face, and neck muscles, Oromandibular dystonia causes spasms of the jaw, lips, and tongue muscles, Spasmodic dystonia affects the throat muscles that are responsible for speech and finally, Torsion dystonia is a very rare disorder. It affects the entire body and seriously disables the person who has it. Symptoms generally appear in childhood and get worse as the person ages.  I wish the definition added that it can affect any muscle you have in your body, will keep the person from doing regular daily things like eating and living their life.

Sometimes it’s better and sometimes worse.  If he has a growth spurt, it can be awful for him.  Otherwise, he likes to do things just like any other teenager.  I try my best to make that happen, even if he is having a hard day.  No doubt he is stronger than me.  But sometimes I can find pressure points and break the tone.  Or make him laugh so hard, that his whole body turns to mush.  That’s my favourite.

Today was riddled with pain, spasms, screaming and still wanting to watch t.v., eat, go to a soccer game, nap, go for a walk and with me to get a position change.  All those things were made difficult by, you guessed it, Dystonia.  The harder I held him, or if I got a rubber bendy straw, the more his head with flip the opposite way, torque itself or limbs would get wrapped in his wheelchair.  The worst is when throat muscles tighten up once the food has already gone in, it makes choking very possible.  It’s pretty hard to scare me, but on occasion, I get super scared.  He often says the look on my face or if I yell, shocks him out of the spasm.

I get worried.  I get worried that he hasn’t eaten enough to truly be full, I get worried he may break an arm as he wraps it around his chair, I’m worried that he’ll hold his breathe for too long and when he can’t do something he really wants to do, I am worried he will suffer physiologically from that.  I don’t worry in front of him and keep my cool most times.   That helps us handle whatever it is together.

He has the best personality and is such a wonderful friend to have.  I mean it, he is a friend.  Our hang outs together, are just as fulfilling as any.  We make each other laugh, take each other fun places, have heart to hearts, fight and cry (well I don’t) together.  The good and bad, we’ve been through it all.  I can’t wait till this, whatever it is, is over.  I hope he can go to school tomorrow, sit, listen, learn and fulfill his goals to go to University!

But for now, Dystonia, you can suck it!  I don’t want to hear from you tonight as he sleeps.  Give him a break, he’s had you visit him unwantingly all day.

 

DSW

Easy

This is going to be a long one.

I have a friends, family and clients who are disabled and need things in this world to be accessible or just easier to get around and make it doable for them to get out there as anybody could.  I love all the experiences I get to be part of with my friends in my life.  However, I am still disappointed when I can do 95% of what a hotel, amusement park, theatre, etc have to offer, and not the 5% because it is not accessible.  That’s how I work, if you can’t participate and do it, I won’t either, all or nothing.

To give you some context, a client and I stayed in a Montreal hotel over the last couple nights.  The room was nice and big, they upgraded us to a two bedroom suite,  I was able to do all his camp laundry, we were close to downtown.  Everything was perfect.  I was so excited to use the heated pool, it looked nice and always gives you a re-charge.  I went up to check it out first, because I know how the world is built.  We were only two floors away, and then the flight of stairs.  They built on the two floors later in renovations and haven’t updated it in fifteen years.  The manager tells me that they built a ramp at the back of their building, and never said or promised that they were going to become accessible.  Pardon me, What???  He did offer that we could swim at their sister hotel, down the big hill, four blocks away.  This was all he offered.

I stayed at another hotel earlier this May, also in Montreal.  They had three steps to the pool.  My friend has a power chair.  We begged, and advocated, I definitely pulled the manager card, which my friend was okay with.  She is very quiet, so agreed to let me speak on her behalf.  This is not always the case, I have friends who are very vocal and I just sit back.  In the end, it was a feat, but worth it because we all got to swim.  I later explained the experience to the Manager how it was that we all got to swim.

“She parked at the bottom of the stairs.  I carried her up the steps, onto a wicker pool chair, A friend and I pulled the chair (it was not easy to move) across the pool deck, parked it at the edge so her toes wouldn’t catch and she told me to push her in.  My friend caught her so she wouldn’t hit her head on the bottom of the pool.  Then to get into the hot tub, we lifted her out of the pool, slid her across the pool deck and lifted her into the hot tub.  When we did the reverse, we had to pull the chair further as the hot tub was on the other side.  The chair kept getting caught on parts of the deck and would tip.  Two people were needed.  We were willing to do this and she was willing to let us, that is how it happened.”  That manager gave us 40% off our room and he was at our beck and call for the rest of the weekend.  I was later informed they rented a ramp for a group, but took it out when they left as it was rented.  I suggested that they invest in their own ramp.

The only hotel I’ve stayed at in Montreal or other cities, Toronto included that have an accessible room, bathroom, access to the pool is…sorry I don’t have one.  All hotels had one feature but not the other.  They have all had renovations in the last ten years.  Why?  Why is that my friends have to give up one thing for the other?  Why can’t hotels post their accessible rooms or a floor plan on their websites, so people can save themselves time and energy.  If I were going somewhere with a friend and they or I were booking it, we call every hotel at least twice, to check how accessible they are, even if it is on their website.  The most accessible hotels I have stayed in, are all in the states.

This is not to say that we are completely turned away, or people are not nice when these issues are brought up.  It’s that nobody has to say anything at all to solve the matter.  Everyone’s mentality should start to change around these issues once adopted.  However, that doesn’t seem to happen.  You can always tell who is training their staff and who is not.

Within my city, discrimination is subtle, changes to rules that have been adopted forever, and then surprising people at the gate with entrance fees that weren’t there before.  Or lists that they are not asking anyone else to be on.  There seems to be this idea that rules and changes can happen, especially if they affect a great number of people.  The problem is, that people who are disabled, it can affect their physical health as they are always fighting a battle, mental health as they learn the world is less and less for them and social health as they are not able to participate due to other constraints that sometimes leave them with no money, no attendant, no wheel-trans and the list goes on and on.

This is only part one.  Stay tuned

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

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.