Archive of ‘Independence’ category

We all Have Our Fears: Unfiltered, Runaway Thoughts of a Sibling

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Always Thinking

Sometimes I get worried thinking about my 30-year old brother, CJ. I think of how our parents are getting older. I think about where he can get help since he is not in school. I think of what he needs to be healthy. I think of how people treat him.

All of this thinking takes me down a path of questions with no end.

What If…

What if something bad happens to my parents?  

What if my parents’ health gets worse?

What if my mom can’t care for my brother CJ anymore?

What if my dad can no longer work and provide for the family?

What if CJ does not get the help he needs?

What if I have to stop working to care for CJ?

What if CJ gets upset because he can’t express his feelings?

What if he hurts himself again?

What if something bad happens to CJ because people are afraid of him?

What if someone calls the police on him again?

What if something bad happens to CJ because people are afraid of him?

What if someone calls the police on him again?

What if they put him in the hospital again?

What if they give him drugs to make him sleep again?

What if people keep treating CJ like he is not human?

For more information and tips on navigating through life as a sibling of someone with autism, refer to A Siblings Guide to Autism: An Autism Speak Family Support Tool Kit.

Successful steps in finding apartments for a person with a disability

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The cost of places to live has been going up. A lot of people have a hard time finding a place to live. People with a disability have a harder time in finding a place to live because the apartment has a long waiting lists and it takes a lot of years to get to the top of the list.

  1. Sit with the person and make a list of places they want to live in.
  2. Go online to any state housing website and look through their list of apartments
  3. Look for the department that has all the states apartments for an application. Print an application and mail it.
  4. Call the main office and ask them if they have an open apartment. If there is one, ask for an application to be sent to you.
  5. If you have a case worker, talk to your case worker to see if they know about any place that you could live in.
  6. Keep calling places and ask if someone moved out.
  7. Put your name on email lists.
  8. You can look for an apartment by writing where you want to live and how many bedrooms you want. They also have apartments that you can pay for your rent depending on how much money you make.
  9. Check: http://www.massaccesshousingregistry.org

This website has a list of places to live that have low-priced rent and a person with disability can live in: http://www.masshousing.com

What does it take to be a support worker for someone with a disability?

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I have been working with people with a disability for 10 years. I want to share what I think  they should be good at. A person has to like working with other people and helping them. Support workers do a lot of work and they are great people. The name of the job might be different at different places, but you still do the same things.

 

 

Support workers:

  • Talk to people with respect
  • Calm                                                                                     ""
  • Caring
  • Selfless
  • Think about things before you do them
  • Talk to everyone
  • Being kind
  • Teach people to speak up for themselves
  • Understand people
  • Assess situations
  • Be honest to people
  • Work with other people
  • Be self-confident
  • Trust
  • Show compassion
  • Be positive
  • Be a good listener
  • Cheer people up
  • Motivate

This site has 13 traits of a support worker: https://personalsupportworkerhq.com/qualities-of-a-psw/

Looking at the whole person?

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Roles

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black and white masks

Have you ever stopped to think how many roles you played today? I bet you would be surprised at how many. For me, today I was a human service worker, shopper, friend, student, cook, and pet owner to name a few. The roles we play in life vary in how we and others value them. Sometimes I am Assistant Vice President, which I deem a valuable role. Others may not feel the same way. They may prefer to pick up and take off whenever they please. At times, I play the role of Democrat. Those who do not value politics or my views may not see this as an important role.

A Human Service View

I spend a lot of time at work reading or hearing about people with different abilities. Everyone has his or her own goals and plans for the future. They also have their own stories. I may never meet them in person, but I learn about them through their stories. After taking a class *, it occurred to me that their stories are only a piece of what makes them “them”. What I realized is the way a person is described places him/her into roles. These roles are not always valued in our society.
When I started working in human services, there was a focus on Person Centered Planning (PCP). The idea of PCP is care centered around the person. At the time, it seemed to make sense. Now I fear we may have missed the point. Much of the focus for people I work with is learning new skills. We work on life skills to help the person fit better in their world. While working on life skills we cannot forget the importance of social skills. There is value and balance when both of these skills improve.

How can we change?

So how do we change our ways? How do we help someone gain valued social roles? It starts with understanding what society values. Today’s society places a high value on money, health, youth, and freedom. These are words I do not typically see in the stories I read about people. In my job, I sometimes find the words used to describe people set limits on the person. We focus on what people cannot do instead of what they can do.
A shift to focusing on abilities and socially valued roles is essential to overall quality of life for anyone. Every person is valuable, but not all roles are valued. Let’s celebrate people for who they are instead of describing people in terms of what they are not. For more information on Social Role Valorization, community inclusion, and similar topics, check out the websites listed below.

* Dr. Wolf Wolfensberger’s theory of Social Role Valorization

Community Training a Service Dog

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palm out on a stop signAfter 13 months I am ready to take Orenda with me into the world and get her used to the ways a service dog has to act, and not act.  It has taken me this long because she was rescued and so she hadn’t lived in a house and had to learn that.  She would destroy things in the house, like couch pillows.

She was anxious in a new place and when I was gone.  So I taught her:

  • relax
  • pee and poop outside
  • chew rubber toys not shoes and library books

For a while I had to put up a gate in a room and keep her there when I left.  But not now.  Not for some time now.

Also, I have low energy because of being depressed for a long, long time.  So I haven’t been as on top of training as I could have been.  Should have been?  Is there a point in saying that?  It just is.  I have learned that the state of being Disabled isn’t bad or good – it just is.  It took a long time to get that, when everyone tells you it’s sad and wrong.

So, I have been teaching Orenda, my tall yellow dog, to not pull on leash or in harness.  We work on it a lot in small bits of time.  “

  • “No pull.”
  • “Over.”
  • “Good Heel.”
  • “Walk Nice.”
  • “Good Walk.”
  • “Go Ahead.”
  • “Yes!”

Community training is taking a dog out into the world with you, to get him or her used to everyday things in the world.

  • How to ride the bus and subway.
  • Where to sit or lie when on them.
  • Not to lick the floor!
  • To leave dropped food alone.
  • Not to drink from puddles.
  • Not to lunge after dogs, squirrels, birds or cats.
  • Not to bark.
  • Not to go over to people unless told to.
  • How to go through revolving doors.
  • On and off escalators.
  • Turnstiles.
  • To go under tables in restaurants.
  • To stay on a mat until released.
  • To ignore people and other dogs.

You get it.

Last Saturday, I took her to class to see how she did.  I had been doing “Go To Bed” in the house with her.  I brought a mat I wove for my last Service Dog.  Before I sat down in class, I put down the mat.  I told Orenda “Go to Bed.”  I had to remind her a few times.  She tried to inch toward me so her butt was on the mat and the rest of her closer to me.  She did really well.  Better than I hoped.  She was very good.  I told her.

If you see a dog with a person, take a minute to look closely.  It might be a service dog.  They won’t always have a harness on.  Many do, but not all.  They don’t have to.  Some people train their own, like me. Before being a working dog, service dogs are ‘in training’.  They have to learn a lot before being fully trained.  My point is:

  • Don’t pet a service dog.
  • Don’t feed a service dog.
  • Don’t bark or meow at a service dog.
  • Don’t talk to a service dog.

Not before asking the person, the handler. This sounds simple, but all of this has happened to me with my last dog.  And he wore a red harness on black and white fur!

A lot of people seem to wish they could have their dog go everywhere with them.  They think it would be fun.  They are jealous and even sometimes pretend their dogs are service dogs!  This may be against the law. It makes watchers doubt service dog users’ need for dogs if you don’t “look like you need one” to other people.  There are many types of Disabilities, most you can’t see or tell.  You can begin to see how much work it is to train a service dog, even before task training begins.

People use service dogs because we need to.  It’s not fun to have to take care of and watch out for a dog and yourself all day long.  Even the best-trained dog is still a dog.  I have to take all the dog’s stuff with me too: food, water, bowls, a mat.  In winter, a coat, maybe boots.  Salt and ice hurt their feet.  Even if you love dogs, please leave that cute dog on the T alone and don’t distract them.  They could be working.

See this article that explains what makes a service dog.  Section II is the part to read.

The article is from the ADA (Americans with Disabilities Act) National Network publication “Service Animals and Emotional Support Animals”.