Tips for Caregivers of Visually Impaired Persons (VIPs) in Care Settings

Meet my brother, Adam, age 80. He is blind and has been living independently in his own condo until now. With increasing cognitive confusion, balance problems, falls, and general weakness, he can no longer live alone and has moved into an assisted living facility.

Adam at 70 on a camping and hiking trip with Ski-for-Light, an organization that assists visually impaired persons (VIPs) in physical activities.

Adam has lived a full and active live even after losing his sight at age 53 due to detached retinas. He has managed well for these last 27 years, keeping his positive attitude and generally cheerful nature.

But Adam lives in the big, black box of blindness. Imagine what it must be like to move into a new care setting.

Imagine: You live in a black box.  The door to your box opens. A person comes in, makes some random noises, then leaves. Who is that person? What do they want?

Imagine. A person comes in and starts talking. Who are they talking to? To you? To the person in the next bed? The person pricks your finger and leaves.

Imagine. Someone hoists your feet up onto your wheelchair footrest.  Why? Your wheelchair moves. Who is pushing the wheelchair? Where is this person taking you?

Many people check on you during the day in the course of their duties. Who are all these people? What are their names? What are they doing?

***

How would these nonverbal interactions make you feel? Confused? Irritated? Frustrated? Hopeless? Helpless? Depressed? All of the above?

Adam experiences all these feelings regularly. VIPs need lots of verbal interaction in order to become oriented to the care environment. Here’s how you can help.

1. Orient the VIP to people he will encounter each day.

Greet Adam. Identify yourself and your reason for being in his box every time you enter.

Hi Adam. I’m Valerie. I’m here to give your meds.
HI Adam. I’m Sarah. I’m going to check your blood sugar level.
Hey Adam. Simon here. I’m going to move your wheelchair away from this doorway so people can come in.

2. Get to know Adam as a person who has a wealth of experiences. Take a few minutes to engage him in conversation.

Our family posted some pictures in his box, and these became conversation starters for people who came in.

Hello. My name is Adam.
I am blind.
Please tell me your name.
You can kid around with me.

The speech therapist saw this next picture and asked about it.

Peaches

Therapist.  Oh, is that your dog? He’s really cute.
Adam. Yes. Her name was Peaches. She had cancer and died. (Peaches was a big part of his life in his early blindness. Adam still chokes up when he talks about her.)
Therapist. Oh, I am so sorry to hear that. I bet you loved that little dog.

This therapist made a personal, empathetic connection with Adam in this short conversation. She treated Adam like a person with feelings.

Brief interactions with Adam make him feel comfortable in new surroundings, and these new caregivers soon become friends. Personal connections are critical to the successful orientation of VIPs.

3. Wear your name tag every day.

Adam can’t read your nametags, but family and friends can. It’s hard for them to remember all the personnel who interact with Adam every day. Help them out. Wear your name tag. And post your name on a whiteboard in the room. Family members can help Adam remember your name and your role in his care.

Next tip coming soon: Orient the VIP to Place.

Meow for now… =<^;^>=

<a href=”http://yeahwrite.me/moonshine/”><img src=”http://yeahwrite.me/wp-content/uploads/2013/02/moonshine.png”></a>

Bk Review: Raising Blaze: A Mother and Son’s Long, Strange Journey into Autism

Raising Blaze: A Mother and Son’s Long, Strange Journey into Autism by Debra Ginsberg
Harper Perennial Reprint edition, 2003.
2002 title. Raising Blaze: Bringing Up an Extraordinary Son in an Ordinary World by Debra Ginsberg HarperCollins, 2002

Nonfiction

Blaze is not your typical child. In fact, because of his extreme behavioral issues, he is a child in need of great support in a modified educational program. He has a strong family support system: a mother, Debra Ginsberg, a writer who willingly gave up her own job and personal success to ensure that Blaze had at least a fighting chance to get a fair and balanced education of his own. The book details the emotional journal of Blaze, his mother, and his extended family (grandfather, mother’s sisters, and a brother) all of whom pitched in to help when the school system proved to be too much for Blaze.

Ginsberg ran the gamut of regular teachers, special education teachers, aides, psychologists, therapists, principals, meeting them all in and out of classrooms and Individualized Education Program (IEP) meetings held to determine the course of Blaze’s school life. Multiple attempts at a proper diagnosis and thus a handicapping condition label left school personnel and family members frustrated. Blaze did not fit neatly into a DSM-IV (the catalog of handicapping conditions labels and descriptors), not that the label would have helped anything. After years of frustration and major disappointments with the educational system, Ginsberg threw down the gauntlet and got a legal advocate for her son.

The book covers Blaze’s life from conception, his difficult birth, the years of doctor’s visits and tests, through year after year of educational crises. Fifth and sixth grades provided a measure of relief in the form of an exceptional special education teacher who was even willing to take Blaze on the annual sixth grade camping trip, a potentially traumatic event for an autistic child.  The book ends after an abortive beginning in seventh grade. Ginsberg and her family begin to home-school blaze in a team effort, with the plan for him to eventually return to school.

Ginsberg wrote this book because she could never find one to read herself when she was in the throes of Blaze’s chaotic school years. She says,

It is true that every human story is unique, yet it is also true that there are qualities we all share as humans. Among those qualities are our differences and thus our sameness. My hope for Raising Blaze was that others would find themselves in this perspective and in our story.

I connected with this book in three ways, first as a mother of a special needs child (I remember those IEP meetings well!), as a special education teacher, and as a school administrator. Because I had sat in the parent’s seat at the IEP meetings for my daughter, I felt I had a better understanding of the parents’ feelings and goals when I sat in the educator and administrator’s seats for their children’s IEPs. Each role made me a better fit for the other roles.

Debra’s book does some of that, too. She tells the truth when she relates the discomfort a parent feels in IEP meetings. As a frequent parent volunteer and a special education classroom aide, she realized that she not only has to teach these children, she needed to touch their hearts. These children well know that they are different, and they need teachers who will treat them as the special persons they are. They are not just a collection of behaviors that vary from the norm.

Teachers and parents of all children should read this book for insights into the world of special education. As an administrator (if I were not already retired), I would have my entire faculty and staff read the book, and then share it with the school community. The book has messages for each person who reads it.

Blaze was in seventh grade at the end of Ginsberg’s book. Now he is in his twenties, and he has written a book about his experiences: Episodes: My Life as I See It. I am looking forward to reading this book, too.

Every Day in May Post 2: I Am Good At . . .

This is post number 2 in the Story of My Life: Blog Every Day in May challenge posted by Jenni at Story of My Life.

See list of prompts for the month of May here and here.

Prompt for May 2. Educate us on something you know a lot about or are good at. Take any approach you’d like (serious and education or funny and sarcastic).

Hmmm.  You’ve heard that expression, “jack of all trades and master of none”?

Sometimes I think that describes me. I like to dabble in a lot of things, then after a while I move on to other things. I travel, cook, read, write, take photos, do Sudoku puzzles and crossword puzzles, sing in a church choir, blog, walk, swim, teach . . .

What I am professionally good at: I have been in the education field for my entire working life, either as a teacher or an administrator.

My first dozen or so years of employment, I was a special education teacher, working with educationally handicapped children. When I first began in special education, the children in my classes were labeled mentally retarded. Thankfully that language has changed. Later I worked with children with learning disabilities. In two segments of time, I worked with teenagers in special situations: a court school setting and a drug and alcohol rehab setting. In the first case, I was the only teacher in a twelve student school. In the second case, I was a teacher in a thirty (+/-) student school where the behavioral and emotional problems were severe enough that class size was limited to three to five students. I have worked in several settings and in many places: public and private, in NJ, MA, CA, Alaska, and internationally in Hong Kong. Each of these places has stories to tell.

Looking over this brief summary, I realize that I am good at adapting to change, both in employment and living circumstances; that I am good at reaching children who hurt; and that I am an educational leader.

X Bonus: Xena, Warrior Puppy, Helps Autistic Boy

Bonus X in the A to Z Challenge. This my second X post. Click the title to read the first one,  X is for X-It (exit) Strategy.

Read a  very touching story about an eight-year-old autistic child, Jonny Hickey, and his very lovable dog, Xena, the Warrior Puppy.  Click on Today Health to read the full story.

The dog, who was perhaps four-months-old when he was found and brought to an animal shelter in Georgia, had been abused and was in very poor condition. Health recovered, he now lives happily with Jonny.   This arrangement has been a blessing for both of them. Get your tissues out.

Animals can be used in therapy with all kinds of special needs situations. Next week, I’ll tell you about a dog who spends his days in a nursing home where my sister lives.

The Last Meow.

Well, I guess some dogs are okay. This one seems to be a nice fella, so he can visit here on our blog. But just a visit. That’s it. The general rule is NO DOGS ALLOWED, but we will make an exception just this once.

Meow for now.  =<^.^>=

VIP (Visually Impaired Person) in the News Again

Michelle Post of the Press of Atlantic City picked up my earlier blog post about my brother, Adam Kroelinger, 78, of Vineland, NJ, and wrote an article about him which can be found here: http://www.pressofatlanticcity.com/news/press/cumberland/vinelander-and-blind-an-adventurer/article_185bc54e-c87c-11e1-9b72-001a4bcf887a.html

Last week while cleaning out a closet, Adam found a box of pictures and asked me to go through them with him. In the box we found pictures from his ski trip to Alaska in 2003. Here’s how it all started.

On occasion, my siblings (nine of us) and our spouses gather from various parts of the country (New Jersey, Delaware,  Pennsylvania, South Carolina, Texas, California, Oregon) for a family reunion cruise.  On our cruise in 2002, Adam walked the promenade deck early every morning for about an hour. On the first few days of the cruise, another family member walked with him, but soon he became oriented to the ship and felt confident enough to walk by himself. He always used his cane, so people were aware of his vision problem and were always willing to assist him if he needed it.

One fellow passenger struck up a conversation with Adam and told him about Ski for Light, an organization that sponsors cross-country ski events and camping/hiking trips for (VIPs) visually impaired and (MIPs) mobility impaired persons. That was all Adam needed to hear. “I can do that!”

Adam talks with Ski for Light friend on Holland America cruise.

When Adam finished fighting with the pirates on board ship (he outsmarted them), he started planning his first ski trip.

Pirates on cruise ship threaten Adam and demand his stash of gold nuggets.

Six months later, Adam flew by himself from Philadelphia to Anchorage, Alaska, (thanks to the airlines for their excellent assistance!) and met members of the Ski for Light organization at the Alyeska Ski Resort. They paired him up with a sighted cross-country ski guide, and off he went.

Ski for Light also arranges ski trips for  MIPS (Mobility Impaired Persons) using specially-designed ski-chairs.

The best part of the trip, Adam says, was meeting other visually and physically impaired people. Seeing how they traveled and participated in the ski activities encouraged everyone involved.

A poster hanging on the wall of the ski resort said it all: “If I can do this, I can do anything.”

“Yep,” says Adam, “that’s exactly right.”

Since that trip, Adam did a second ski trip in Wisconsin and later a hiking trip in Colorado. And tonight as we talked about the trip he said, “That hiking trip was really fun. I think I’ll do that again.”

Now that’s positive thinking. How many 78-year-old men do you know that want to tackle the hiking trail?

I think the Atlantic City Press is going to hear more about this intrepid adventurer.

Look for more Ski for Light stories on their Facebook page.