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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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.

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.