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

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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

Life lessons

Ontario Place.  Remember that place?  My mom took my brother and I there a lot when we were kids.  I was the ever passionate dare devil. I would push my brother in his wheelchair through the punching bags hanging from the ceiling, carry him up to go down the huge slide and squeeze him in beside me on the bumper boats.  Sometimes he laughed, other times he gave me a “why me” look.

I learned a lot of things going out with my brother and my mom.  She really does know everything.  My brother being vulnerable, she had a heightened sense of emotional intelligence, seeing what people needed and caring for people even when they didn’t know it.   She slowly and subtly passed those things on to me.

We took Wheeltrans everywhere we went.   That was back when you had to book it five days in advance. If you booked on the fourth day in advance,  you were too late and had to wait till the same day of travel to try and book it.  You can bet I was on the phone early Monday morning booking for Saturday to go out.  My first lesson: planning ahead.

We often booked to be dropped at the East gate.  It was easier to get to. You’d avoid the ramp with about seven rises before you got to the top and you didn’t have to walk along the bridge looking down at the water. Sometimes, wheeltrans would go to the west gate.  You could see it from the east gate.  My mom would say “run over to the other gate and tell the driver we’re at the east gate.  If it’s not our bus, wait at that side and keep an eye out over here.  Run back if you see me wave.”  Lessons two and three: Run fast everytime and be observant.

One time Stephens wheel broke off his wheelchair.  The front left.  We could see the bus sitting outside the gate. Couple bad things happening here.  We could miss our bus, they won’t take a wheelchair if its broken and we had run out of meds and food for my brother. We had to take this bus home and couldn’t wait.  While she ran to explain to the driver, I went into the first aid and asked for tape and string.  They got tape out of the first aid kit and string from their ballons.  I took my brother out and sat him on the floor.  Flipped the chair upside down and proceeded to wrap the string around the broken wheel, attaching it to the base.  I then tapped it. My mom got there and helped.  We must’ve done it in five minutes.  We caught our bus.  Lesson five: Use your resources and think on your feet, because the consequences could be much worse.

Sometimes we’d pack lunch to save money.  Sometimes my mom would buy lunch with the little money she had.  She didn’t pay for herself or Stephen to get in, only for me once I was older than six.  We sometimes had to ask for a “no fare” on Wheeltrans and pay at a later date.  But man, did we always have a fun time.  She never let on that money was an issue.  Even if she said she didn’t have enough money to go there and we’d go somewhere that was free, we’d have the best time.  Lesson six:  Money is nice but people are better.

If I didn’t have my brother and my mom, these lessons would never have been what they were. Thank goodness for that.

Sibling

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