Thursday, March 28, 2013


Being a caregiver is the most important job a person can have.  It seems to me that sometimes many caregivers forget that.  They come to work with their own agenda of taking personal phone calls and watching television.

I can't count the number of times rude comments have been made to me.  Comments regarding my weight and the tone of my voice have been particularly hurtful. 

The last instance was just two weeks ago. A caregiver blurted out that I was getting harder to handle.  It wasn't the fact that she said it, it was the way she said it that was hurtful.  I do all I can to keep my weight down.  I'm well aware of the fact that because I'm unable to assist a caregiver very much,when they are transferring me, that it may seem like I'm heavier that I actually am.  I ask that my caregivers wear a back brace for their protection and mine.  Some do, some don't.   I have shown the caregiver who complained about my weight, ways to move me that are easier on her back. I have asked the caregiver to wear a back brace whenever she's assisting me. Things are much better now.

A caregiver once told me my voice was annoying.  She told me she would record my voice on her phone so that i could hear just how annoying it was.  When I reported  this incident to the agency, the caregiver was replaced.  The entire incident was caused because I'd reduced my hours and the caregiver wanted more hours.  She got the hours she wanted. The caregiver was rewarded for her unprofessional behavior rather than being reprimanded.

I have had caregivers who didn't like to be awakened at night.  And, they let me know it. If you are a caregiver working nights, your job is to be there for your client, not just to sleep. Make sure you get a little rest before your shift begins.

I have written two other posts regarding caregivers.  I didn't plan to write another because I don't want it to ever seem like I'm bashing home care agencies or the caregivers they employ.  That couldn't be further from the truth.   By writing about some of my experiences, over the past seven years, I'm trying to make things better for both the client and the caregiver.

Caregivers should remember to always speak to their clients in a kind and respectful manner. It's not a client's fault if a caregiver is tired or is dealing with personal issues.

Caregivers should keep cell phone use to a minimum when they are working.. 

If a problem occurs, the agency should find a solution, not just replace someone..  It's hard getting used to a new caregiver. It is also hard for a caregiver to get used to a new client.

I've said in a previous post that my biggest wish would be that agencies allow clients to evaluate caregivers. 

 I've also said that caregivers work long hours sometimes.  Home care is costly.  Caregivers, however, are underpaid for what they do. 

It's okay if a caregiver makes a few phone calls and watches a little television throughout the day.  I want my caregivers to have a pleasant experience.   But, caregivers should always make sure they talk to a client and check on them regularly to see if they need anything.

Caregivers should let their clients know they care. And, during the hours they are with a client, the client should be their number one priority. 


Saturday, March 23, 2013


According to the United Cerebral Palsy Association's website March is Developmental Disabilities Awareness Month.   March 25, 2013 is National Cerebral Palsy Awareness Day. 

Cerebral Palsy is a disability that's caused by the brain being damaged or not properly developed.  Damage can occur before, during or shortly after birth.  Cerebral Palsy affects, movement, coordination and balance.  In some cases a person's speech is affected.  

The three main types are:

Spastic Cerebral  Palsy causes a person's  arms and legs to be stiff. This makes it difficult for them to move easily. This the type of CP that I have.

Athetoid Cerebral Palsy causes a person to have movements that are involuntary.  People with this type of CP cannot control the movement of their body. 

Those who have Ataxic Cerebral Palsy have difficulty with balance and depth perception.  

People with Mixed Cerebral Palsy have a combination of the types.

Actress/comedienne Geri Jewell was the first disabled person to be given a regular role on a television series.  She played Blair's Cousin Geri on Facts of Life.  She also has CP. I had the pleasure of having lunch with her  when she came to Meramec to speak for their Disability Awareness Day.  She was inspiring.  I could relate to many of the things she went through growing up.

In 1998, Dr. Jan Brunstrom of St. Louis Children's Hospital, started the Pediatric Neurology Cerebral Palsy Center.  She, too, has CP. Imagine having a doctor who truly understands what it's like to have your disability.  It must be reassuring and a tremendous asset to a child's treatment

I would have given anything to have had role models like Geri Jewell and Dr. Brunstrom when I was young.  Sadly, back then, there was no one to look up to.  No one to offer hope.  I'm so glad things are different today.

On March 25th please wear green to show support  for those with Cerebral Palsy.  .

Monday, March 18, 2013


Everyone wants to be remembered.  Everyone wants to know that they mattered.  Everyone wants to know they have contributed something to this life.  I'll be fifty-six in a few weeks and I have been thinking about what my legacy will be.

 I don't have any children.  That used to make me sad.  I began writing children's stories for a friend who taught preschool.  As a result, a little pink bear named Bianca Bear was born.  She really is like my baby.  I was very protective of her stories.  So protective in fact, that when an editor told me that if I ripped the stories apart and re-wrote my entire manuscript, I'd have a better chance of getting a mainstream publishing deal.  I couldn't imagine ripping my manuscript apart and starting over.  I self-published.   Good or bad, it was the choice I made.  Bianca Bear is an example of what a true friend is.  She's loyal, helpful and supportive of her friends.  

Fifty years from now, if someone stumbles across a copy of THE BUSY WORLD OF BIANCA BEAR, (or finds her blog on the Internet) I hope they don't think it's corny.  I think the lessons in the book of friendship, bravery, sharing and love are timeless.  I hope they never become obsolete.

I started this blog for fun.  Just to see if I could write something on a regular basis that would be of interest to people.  I learned its true purpose very quickly.  Its purpose is to inform and educate others on the issues and challenges people with disabilities face.  I wanted to share a bit of my life with you as well.   I have gotten many positive comments.. This blog is the most important thing I have ever done. I'll keep writing about the things that are important to me personally, as well as issues that affect the disabled community.  I hope you'll  keep reading..

Fifty years from now, I hope all the barriers to disabled people leading full and productive lives have been broken. I hope that people who read this blog will see how far people with disabilities have come.

I used to worry that I hadn't done anything that mattered in my life.  I know now that my writing is my contribution. My writing is my legacy. 

.    .

Monday, March 11, 2013


I have only had one paying job in my life.  The rest of the positions I've had, have been volunteer positions. Even my teaching job began with my volunteering in the data lab at Meramec.  I have volunteered as a teacher's aide, peer consultant and, now, at my library. 

It makes me sad if I hear a caregiver say, "that's not in my job description," if I ask them to do something that would help me, but is not technically part of their duties.  Most of the time they do what I ask, but let me know they are not required to do it.

Helping others in any way you can is important.  Volunteering is important.  I love my volunteer job as a greeter at my library.  I answer questions, give directions, help patrons find books or just talk to people. The staff has been very supportive and accepting of me.  I feel I belong there.  I have missed days this winter.  When I miss, I always try to make up some time.  I know the library appreciates my help. I want to thank the staff for making me feel so welcome.

I understand making money is important. People need paying jobs to provide for themselves and their families. I'm determined to become a freelance writer.  I won't stop until I achieve that goal.  But, for now, I''m happy volunteering at the library.

My passions are books and writing.   The library is the perfect place for me.  Find something you are passionate about or find a place where you can make a difference. Give a little of your time.  You'll be surprised at how good you 'll feel.

Currency is not always monetary. Currency can be just a smile after you have taken the time to talk to someone who is lonely.  Maybe you're volunteering at the library and you help someone find a book they've been looking for. Their appreciation is your  currency. .I think anytime you help someone and know you have made a difference in their lives, the good feeling you get is currency enough.

Money is important but, money isn't everything.   


Saturday, March 2, 2013


As I sit here trying to write a tribute to my brother Bill, who passed away from Cancer on February 1st, I can't believe he is gone. I can't believe that I will never see him again or get a phone call offering advice, whether I asked for it or not, because as we all know, it's an older brother's job to share their wisdom.

I am unable to attend his memorial service in Arizona because the logistics of traveling would be too difficult.  I hope that you'll permit me to share some memories of my brother in this post.  I won't write about his many accomplishments as an Orthopedic Surgeon, teacher and lecturer, or tell you that he was a forerunner in the field of Sports Medicine. I won't even tell you that he went to Harvard University and Medical School and what a great football player he was. I want to share a few memories of my brother and what I'll miss most about him.

When I was little, I could never go to the airport or train station to say goodbye to my brother when he left for college.  It's not because my parents didn't want me to come along, it's because I'd be crying so hard  they were embarrassed to take me.  I couldn't help it; I just didn't want him to go. 

I remember Bill and his wife Susan, (although I don't think they were married yet) staying with me one evening.  Bill acted out the entire story of Sleeping Beauty.  To this day, if I close my eyes, I can still see him dancing around the room.

Bill traced and cut numbers out of sandpaper so that I could run my finger along the rough surface of the sandpaper to learn my numbers. 

When I was eleven, an appointment was made for me to see a doctor about the possibility of my having surgery to straighten my legs.  X-rays had to be taken.  I was afraid.  Bill donned a lead apron so that he could stay with me while the X-rays were taken.

The last time I had surgery, Bill called the doctor who was performing the surgery and talked to him.  I don't know what questions he asked, but he wanted to make sure that I had the best doctor. 

Three weeks before my mom died, Bill came to visit her.  He came into the room and said, "Mom, how come you're not watching the basketball game?" (It was March Madness.) Here was my mother with her family around her watching a basketball game.  Just like any other Saturday.  That Saturday was one of her last good days.

Bill was the reason I began blogging. He suggested I start a Bianca Blog and write stories to go along with my children's book.

Last June I sat next to Bill at the dinner following my nephew's wedding.  The wedding was the last time I saw Bill.  We talked and he made me laugh just as he'd done countless times when I was little.  It is a memory that I'll cherish.

I'll miss the way Bill could be silly and make me laugh.  We didn't always agree on things, but I know he wanted the best for me.  I'll miss knowing he's just a phone call away.

Bill accomplished so much in his life.  He helped many people.  I am proud to say he was my brother.