Not my house

Have you ever lived somewhere different? Not a different country, but, in someone else’s home…their not home? I have. In fact, last September, I lived in one different country, two different cities and one different riding, all in someone else’s house.

New York was the best. I got to sight see, while my client was at school. That being said, I ran errands, had Skype meetings, worked on my laptop till 2a and wondered how everything was doing in Toronto. Life went on as I knew it. New York is so much like Toronto too, it wasn’t that hard to continue my regular routine. When I flew back to Toronto at 3a, I slept in my bed one night and headed out at 8a the next morning. A whole five hours in my house. No unpacking necessary.

My favourite is coming home. It is not too long that I am bored of my place again though.

Now I’m finally home. I thought, woo, November will be nice to be home. Then I remembered…my best friend is doing a school placement away from home that will be good for her professional career in the end. Guess who’s taking care of her six year old daughter for three weeks? This lady! Once again, not home for prolonged periods of time.

There was a small break in the beginning of the year. It lasted one month and I thought “how nice it is to be home.” I was tired with other things, so, came home every night. But, wasn’t feeling full in my own dwelling. Soon, the calls began to come in for overnights and vacations. Wooo hoo, it meant people were taking a break after the March Break.

It also meant packing my bags and keeping them somewhat packed with essentials.

Currently, I just lived in three different houses in fifteen. I wasn’t taking care of anyone specifically. I did become part of wherever I was though. I became an auntie, big sister and cousin, it’s like having my own children.

I will soon be moving to a camp for a month, to spend different sessions with different children. It will be exciting to meet new people and somewhat bitter too to be away from home and have things change.*

All in all, this home on earth, is not really mine. Even the one I pay for has stories without me. If your travelling or moving around “Peace be da journey.”

*Some things and people stay the same, some don’t. Keep souls and spirits alive in all you’ve known.

It’s not mine con’t…

Once I started working, really making a go at this caregiver thing. I worked with a young man who to this day has stolen my heart. We are connected in a way I don’t even understand and he was the best comfort after my brother had died. Mind you, he can’t do anything. He is fully dependant, has a wonderful sense of humor, loves blondes and is one of the best people I know. HE definitely reminded me my body is not my own!

In our first year together, he coughed and vomited on me, demanded to sit on my lap or beside me, didn’t let me leave the room (by coughing or crying), needed to be lifted (he wasn’t light) and cuddled with me when he was tired and frustrated with his own body and what he couldn’t control. Can you imagine not being able to control your own body? I’d take hostage of someone else’s too.

These kids. My kids. They need me in the most complete way that one person has ever needed another. I am happy, honored, even exhilarated to be there for them.

As my friends grew up and began having kids and getting married. I got to meet new people to love, share with and get good hugs from. My friends friends kids, some call me Auntie, are awesome! I miss them, have pictures of them in my wallet, relish the time I get to spend with them and am excited to watch them grow up. I have babysat, fed, bathed and taken care of these children. Cuddled with them, rocked them to sleep and even taken care of some of them when their sick. I am so lucky to have them in my life.

My body is a force to be reckoned with! It is strong, faces adversity, patient, compassionate and lends gives itself to others everyday day. I just hope my heart can be those things all the time. Thanks be to God for this body.

Maj

It’s not mine

Ever since I was young, I’ve always loved kisses, hugs and wrestling with my brother. That was one of the biggest ways for us to bond, being physical with each other. He wasn’t going to be the one to reach out for a hug or push me over, then again, he was always good at that. Even before his disability he would carry me around the house and sit me on riding toys, make me play with toys or just have me as his little doll. He had me until the day that I had him. It was pure role reversal.

I was always the quiet one who would sit and look around not saying a word. This can still be true, but happens so seldom, that people don’t usually believe it. He was the out going and social one. He had tons of energy. Once he acquired his disability, he went quiet. He couldn’t talk and was less active due to his brain damage. He was active in a different way for sure. I became overly active, talkative and mischievous. My body now had to find ways to connect with my brother as we shared a different type of relationship. Sorry, that was purely a separate thought.

Growing up, I’d been reminded that my body is not my own. I was also told a lot of different things about my body. First one was “Fat.” That bothered me from about ten to twelve years old. I had had a major growth spurt and was changing into a young adult body. Once I realized that to be true, I thanked my grandma for the heads up, but that I already knew.

The next was that I was “big.” “Big what?” I ask. Big personality? Yes, definitely. Big mouth? Absolutely! Big…? Yea probably. But I could take you in a fight, so I don’t think you should argue with me over this?!

The next was beautiful. That came from me. It came from others, but wasn’t believed until it came from me. I had always celebrated what my body was put on the earth for, but those years when you can’t get away from people; because they’re family or school peers or your own thoughts twisted by others views. I think my final stages of beauty was me seeing what people like my brother saw in me.

My body is not my own. It belongs to me, but (I feel) is meant to be shared with those you chose to share it with. I don’t mean in a sexual way necessarily. I mean in what ever way you want. Cuddling, hugs, sitting beside someone you like, kneeling to play, running a marathon, dancing or just to inspire yourself and others. Just remember, this body is only on loan. To be continued….

Maj

Life goals

I have never really been one to make goals. I mean, I am a dreamer, I aspire to be, but I’m not good at writing things down and then striving to achieve. I like to keep it all in my head. The hardest is when others think you should complete something because it’s important to them.

I talk to kids about their goals all the time, things they like to do now, I see them doing in the future. This never depends on their disability, it is in spite of it.

I truly believe it is good to dream, make plan and have aspirations. The reason I don’t set anything in stone or write it down is because our world changes, things happen and I don’t want to let myself down. This doesn’t stop me from striving as hard, it allows me to take a break, forgive myself and enjoy the journey. Something the kids in my life have taught me so much of, ‘enjoying the journey.’

In my life time I could set out a hundred goals, achieve fifty and keep beating myself up for the other fifty that lay un-finished. I don’t like to beat myself up, so I enjoy every one slowly and one by one. If someone else swoops in before me, that doesn’t mean I can’t still achieve whatever it is for my own personal satisfaction. For example, I’m learning to drive. People always say things like “why don’t you drive” or “how can you not drive” or “it’s about time.” I want to say back, “I meet some of the most awesome people bussing” or “so your sixteen year old can drive, I can give you directions from here to there or take the subway anywhere I travel to and read a paper map.”

Someone else’s goals are not my own and vice versa. I like to work at my own pace and support you to do the same. I will keep making goals and sharing them. However, achieving them is a state of my body, mind and soul, people see that.

In other words, take lessons from your kids. Make goals that you can enjoy right now and later too if that’s what the case may be. Don’t worry about what you didn’t get done, “peace be the journey.”

You don’t always have to share

I run into all types of people in my travels. Every once in a while, I’ll have a chance meeting with another person. Sometimes, I meet other children or families who take of someone who has a special need, other times, people are just saying hi when they walk past you in the street. I talk to strangers all the time. If people want to smile and say hi, what’s wrong with that? If someone wants to shake my hand, why not?

Today I was in a women’s washroom, waiting my turn in line. About a minute goes by and I feel a small hand grab mine. I thought it was my niece who I was at the zoo with. I turned around to find it was a young girl, about six. Her mom was holding her other hand. I turned around and said “hello, how are you?” Her mom then looked at me and without missing a beat, said “sorry, she’s Autistic.”

I almost gasped I was so surprised she was sharing this information with me. I looked at mom and told her it didn’t bother me. “Also, you don’t have to share that with me. You shouldn’t feel obligated to apologize for your child.”

This isn’t the first time somebody, a stranger, has shared their child’s disability with me. Why do I need to know unless I’m directly caring for your child. When people ask me what my client has, I say something like this…”I can’t tell you because it’s confidential.” I really want to say, “I can’t tell you, because its none of your business.” If I do share someone’s disability with you, what are you going to do with that information anyway?

Sometimes people have a family member or a child and are just relating to you. There is a community of support workers also, so, they want to relate too, or inquire for their own reasons. My favorite are the people that guess the disability in their heads, you tell them and they say”that’s what I thought it was.” As if they have won a trivia game. I didn’t know it was w guessing game. What do I say to that ‘good job, you were right!’

My point is, you don’t always have to share personal things with me and I have a right not to share them with you. It’s great if you want to educate yourself on different disabilities, but, please use google. And, just because you read something, don’t assume that every person with that disability has all those symptoms or looks that way doesn’t understand.

Treat people the way you want to be treated. Show compassion to those who need it. Read body language. Say things in your head, before saying them out loud. Treat people age appropriately. And last but not least, know that people aren’t their disability, they have a disability.
DSW

The observant ones…

People say “that’s not your job or you don’t have to” to me all the time. There’s different ways to say it. “That’s not your job!” in an no, I’ll do it, kind of way. Or, “that’s not job…” you don’t have to. My favourite has to be “that, is not your job!!!” When people say it like this, I really want to ask who’s job it is and why they’re not doing it?

I’m not doing it because it’s my “job.” I don’t care if someone’s going to pay me for it. That’s usually what it means in my line of work. People work as a team, but, going above and beyond what they are paid to do, now that is my job!

I do things that are not my job all the time, that is just the way I was raised. My mom taught me that if something needed to be done or I see something wrong, to make it right, help out or offer myself. She taught me this by being observant herself. If she saw something that wasn’t right she’d encourage me to help make it right.

There’s things as simple as, you leave a communal lunch table at work, clean up what’s yours and even what others have left, if you are the last one. See random paper on the school or work floor, pick it up. Then there are the hard things that are ‘not your job.’ Stay five minutes past your shift so a child can finish what they’re saying to you. Fold a families clothing if your client is sleeping and there is nothing else to do. Or, read someone a book, instead of entertaining them with your iPhone pictures or the taps your fingers make from writing a text message.

When things are “not your job.” They end up being nobody’s. Because, even the person who ends up doing the job may be exhausted, overworked and resent what their being paid to do. Everyone follows suit and, your client is board, tables stay dirty and you step over the trash you could’ve just picked up. We somehow, slowly teach our brain not to notice things or people.

I’m going to keep doing things that aren’t my job. Even if it impacts no one and people don’t see, it changes my outlook on things and impacts the way my day goes. And there are people that see, the observant ones.

How you feeling?

You know that sing by Nina Simone “birds in the sky, you know how I feel. Scent of a pine, you know how I feel?” So, how do I feel you ask???

I have been taking care of the sweetest kids for the past five days. After cooking, cleaning, getting up, dressing, laundry, bathing, feeding, spreading beds, getting two off to school and that was just this morning…I feel, fulfilled!

Fabulous even. There is something about having children around that gives me a sense of purpose. Not that I don’t feel purposeful. But, children do this neat thing in your life where they are just there. Unapologetic, natural, honest and wonderful. They add so much richness to a persons life.

I know all these things get harder day in and day out. Being a parent is hard work, there’s no doubt about that. I know I get to go home and will eventually only have myself to take care of. These experiences (of part-time mom) have taught me that the help is so appreciative when you have it.

So, while I’m in my fifty-fourth hour of work, because I went to work after working. I wouldn’t do any looking after over night if I knew I wouldn’t feel so alive afterwards. I would take care of these kids for free if I could. All in all…

freedom is mine, and I know how I feel. Its a new day, its a new dawn, its a new life, for me. And I’m feeling gooooooood!!!”DSC04014

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Wait, you can talk!?!

When I meet a new family, I ask questions, a lot of questions.  This is how I get to know my clients well and their families. I ask a lot about their child too, I need to know them really well.

Sometimes information about your child, that can be helpful to me is missed in the initial interview. For different reasons of course. You may not know that it will help, it may be behaviour, there are language barriers or the worst, parents are afraid I’ll get scared off and leave. Let’s just say now, that will never happen!

The best is when I am given false information. Again, this happens for many different reasons.

It always surprises me and sends me for a loop. Emotion high or low, everytime, depending on the surprise.

Talking is a big thing. About 80% of my clients are non-verbal. Which is great that I talk so much.They communicate in different ways. I am no stranger to Aumentative Communication (alternative ways to communicate).

I was supporting with a new client, who I was told is non-verbal. We got on the streetcar and I started pointing things out and saying them…he then (to my surprise) started mimicking me. Emotion high. Haha, I totally had a “you must love me to be talking for me” moment. Of course my initial reaction is a joke and super cocky.

I was happy he was talking and that we were friends. Not a big thing and it didn’t hinder safety, but I gave me a good laugh.

Its coming up…

Schools out that is. Yes, I celebrate Christmas, but Canadian Christmases just get worse and worse. The gift and guilt buying, the things your child or people are upset that they didn’t get, the people that get mad at you, for saying “Merry Christmas,” instead of saying, “I don’t celebrate Christmas, I celebrate Kwanza or Hanukkah” and sharing in the season rather than being bitter, the list goes on.

I do celebrate Christ-mas with my Church family, friends and my mom. It is special to us because of what it beings to us. Even as a child, I only got one or two gifts from my mom or a friend. I am thankful that I didn’t get a ton of stuff, because now, I can be truly grateful for what I do get.

One of the other fun things about the holidays, which I mentioned, is kids are out of school. I get to hang out with the young women and men I enjoy so much. I have been working on my December/January holiday calendar for weeks now. Perfecting it, making sure I have enough staff, planning outings. I hope we have some snow soon, the kids all like snow ball rights, throwing or getting hit, it sometimes doesn’t matter.

I always have a hard time with knowing what to get the families I work for. I used to just do toys for the kids, but that gets pricy and sometimes the toys don’t get opened. Last year I did a free overnight or evening coupon, so parents could go out for the night. Ooo, I also bake rum cake and give it to the parents. Last year I made nine cakes, this year it will be more. I owe one family my first cake too, I missed them last year.

All in all, I am excited about the holidays. It should bring some fun and adventure. Maybe I’ll post some pics later.

Happy holidays to all and a blessed New Year!



A day at the beach

Since Sunday was such a nice day, I took one of my clients to the beach. He is my favourite because he likes to run and be active and when he looks at something and smiles, his eyes tell a story you wouldn’t believe. All my clients are favourites though.

He loves sand, water and being outside. Would never wear a coat if he didn’t have to, spend his time by a pool wearing trunks, or not if they weren’t close by. He would just swim with clothes on. Basically, the beach was the perfect place to go.

There we were, walking along the board walk, people watching and looking for a good spot to ditch the wheelchair and go for a run. Ha, found a spot! There were other people there too, we always make friends.

I undid his seat belt and he was off through the sand, destination, water! As I caught up to him, we sat and trickled the sand through our fingers. We talked to strangers, three dogs climbed on him as he lay in the sand and we watched people fly their $400 kites. You know the ones, huge in size, heavy duty handles and cables, a lot of body leaning to control it as its so big. Ate at a nice beach cafe, saved a lost child and watched…

…water roll in, sand trickle through our fingers, the sun poking its head out, just watched. I love to talk and be social, but there’s something about sitting in silence and taking everything in and that happened Sunday; Thank you!

DSW