Share Your World ~~ 2016 Week 11


 

http://ceenphotography.com/2016/03/14/share-your-world-2016-week-11/#like-15891

SHARE YOUR WORLD – 2016 WEEK 11

With your answers, please remember we are in the SYW world and which may not always match our reality.

How many siblings do you have? What’s your birth order? 

One. Stephen Palmer. I am the oldest. He is the younger.

DeB and Stephen March 1964
Me and Stephen March 1964

In a car would you rather drive or be a passenger? 

MR-MAGOO-CAR-COLOR-CROP
Mr. Magoo

Now with my poor eyesight my only option is to be a passenger unless anyone out there wants to be driven around by Mr. Magoo!

When you lose electricity in a storm, do you light the candles or turn on the flashlight? How many of each do you own?

So far that has not happened in the time I’ve lived in Brooklyn but my room-mate has lots of candles so we would be lighting the candles. I do have a flashlight but I need to buy some batteries.

List at least five of your favorite types of animals?  (any animal to domestic to wild to marine life)

Cats  ~ I  own one cat Sylvester or should I say He Owns Me!! LOL!!

Dogs

Birds

Fish especially goldfish and Koi

Whales ~~ I enjoyed the few times I went whale watching years ago and hope to do so again.

Dolphins

Porpoises

Horses

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I am grateful that my pregnant co-worker enjoyed the baby gift I got for her. She is having a little girl next month.  Looking forward to the two days off work I have this week. I don’t have to return to work until March 17th!!  All photos from Google.

Happy St. Patrick’s Day!!

 

Even Caregivers Need Help


Stephen 115th Road

I don’t like to ask for help. I pride myself on being self-sufficient and when it comes to my personal needs I almost never ask for assistance.  However when it comes to my brother Stephen it is essential that I ask.  As I’ve gotten older there are some things that I can no longer do and driving is one of them.  That saga began with a minor stroke at age 49 in 2008 and retina surgery on my left eye in Jan. 2010. My vision is 20/100 so no driving for me. I can cope with that as New York City for the most part has excellent 24/7/365 transit service except to where my brother Stephen lives.  At one point there was a city bus that went out to his neighborhood but because of MTA budget cuts that bus line was eliminated.  Problem.

At first a solution presented itself in the form of Stephen’s Group Home dropping him off to me in Brooklyn upon my notifying them in advance for vacations, holidays, parties and his birthday.  This solution worked well until last weekend. But you posted pictures of you and Stephen having fun last weekend you say.  Yes but in order for me to get Stephen from his residence to my home sadly required a big fight with the manager/supervisor of his residence.

I am an organized person. Being that it is very difficult for me to get time off from my job I send in my requests well in advance.  Once I get the approval from my workplace manager I then tell my room-mate and mostly importantly the manager/supervisor of Stephen’s Group Home. I send follow-up emails.  I call to confirm.  Thinking everything was in place I called Stephen’s residence on the Saturday that they were supposed to bring him to me to find that none of the direct care workers had any idea that Stephen was coming for a Home Visit.

It was suggested by one of the staff that I choose another weekend!! As you can well imagine I was getting more angry and agitated by the moment. I kept calling. They hung up on me!! Finally I told them that I was coming up there! (Don’t ask how as I don’t drive.) That scared the shit out of them and the manager finally called me. Her first reaction was to yell and scream at me saying that it was my fault, that she was sick with the flu, etc….  By this time I was heated and changed into an angry Ghetto Bitch. Yes I cursed her out. Screamed and yelled back. I don’t like to be ugly but sometimes negotiation is out and force is in. Then I told her that I was going to call her boss the following Monday.  That was at 10:30 am.  Stephen appeared at 11:00 am.

I managed to put away my anger for the duration of Stephen’s visit but our visit was abbreviated by another staffer who kept calling me while Stephen and I were out enjoying the Brooklyn museum. This extremely rude woman continued to call me while Stephen and I worked on an art project. She insisted that their driver pick up Stephen immediately as they were short-staffed. As a result my time with Stephen was cut short.

I called the Director about this farce last Monday and my call again tomorrow to follow up on whether he intends to speak with his staff about their poor, rude and unprofessional behavior.

Here’s where the cry for help comes in.

Finally I told God that I CANNOT do this anymore by myself.  I’m tired mentally, physically and emotionally.  Last year after being hospitalized against my will at Kings County Hospital I was forced into going to therapy. I told the doctors there all the problems I’m having as a caregiver and asked if there was some practical way they could help me. They said No. Well at least she told the truth.  After that I never went back. Why waste my time with therapists when I need to find practical ways to help Stephen.

Stephen’s 55th Birthday Celebration

Stephen’s Birthday is May 3rd and I want to plan a small Birthday Party or outing for him. Bad enough I don’t get support from my job but to be insulted by the staff of his Residence is the straw that has broken the camel’s back.  I know that I’m supposed to remain positive, not say I can’t, be angry or any number of those dumb idiotic positive thinking, love, light, forgiveness bullshit I read about all the time but all those people who say those things are me. They don’t know or care to understand what I’m going through. They have no idea how difficult it is to hold down a full-time job and care for a developmentally disabled sibling with no support from my workplace or anyone else for that matter.

Some of my paternal cousins have rejected both Stephen and I because of his Autism. They even had the nerve to say to me back in 2012 that my mother did something to make Stephen “that way.”  Needless to say I Do Not speak to this branch of cousins and never will. Once you start talking mean about my mother or my brother you are on my shit list for life.

I am his primary caregiver. I have now reached the point in my care-giving attempts when I need help. Real physical Hands on assistance. I need to partner with someone who has a car and can drive me to and from Stephen’s Group Home in Bellerose, Queens.  I Live in Brownsville, Brooklyn.  If anyone out there in the New York City area can help me please email me ASAP. Yes I will pay you for gas.  Thanks.

 

Stephen_DeBorah_Jan1994

SHARE YOUR WORLD – 2016 WEEK 10


 

http://ceenphotography.com/2016/03/07/share-your-world-2016-week-10/#like-15736

 

What would you ask for if a genie granted you three wishes?

Good health

Loads and Loads of Money. I want to be Rich. I want to be Wealthy because Rich people have options that poor people don’t have!

More time with my brother Stephen.

http://www.imdb.com/title/tt0058815/

https://en.wikipedia.org/wiki/I_Dream_of_Jeannie

 

What experiences are most meaningful to you?

Spending time with my brother Stephen.

Writing

Photography

As a kid, what did you want to be when you grew up?

At first I wanted to be a Mommy  then as I got older I realized I wanted to work outside the home like my Daddy.  For a while I thought I was going to be an Artist because I enjoyed drawing and sketching. Finally in my later teenage years I wanted to be a writer. Well I’m neither a Mommy nor an Artist. I do write but I don’t get paid to do so and I doubt I’ll every make a living as a writer. Lucky for me Writing is something I will always do whether I ever get published or not.

Complete this sentence:  The best day of my life was…. 

Earning my BA in English and graduating from Marymount Manhattan College in May 2002!!

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

Grateful for last week’s vacation and time spent with my brother Stephen this past weekend. Looking forward to next weekend.

 

 

 

 

 

 

 

 

 

Yes Compassion is a Skill!!!


 

These are the people who help take care of my brother Stephen. Please support the Direct Care Workers. Come out to the Rally on March 11th. If you cannot come out to the rally to increase the salaries of Direct Care Professions please call, write, or email Gov. Andrew Cuomo. Thank you.  Unfortunately because of my work schedule I cannot be at the Rally. Those of you who have been following over a period of time know that it has been next to impossible for me to get time off work for Stephen or to extend my Autism Activism/Advocacy.  More or less I’m doing my Autism Advocacy with my hands tied behind my back.

Somebody please tell me why people like my brother Stephen do not have value in this country?  Why aren’t the Direct Care Workers paid a living wage?  I’m afraid. I’m afraid for Stephen. If the Direct Care Workers are not there then who will care for him?  How will I hold down a full-time job and take care of my brother also?  It is very difficult to be happy when you don’t know what the future holds for yourself or your developmentally disabled Loved one.

 

The Cost of Compassion

 

GET READY TO RAAALLLYYY!!!
We support the Governors proposal to raise minimum wage to $15 an hour in
NYS –
but there is NO MONEY IN HIS PROPOSED BUDGET to pay for it!

We need additional funding to pay workers the increased wages and to raise
lower paid staff salaries so they don’t lose ground when the minimum is
raised.

Where:      633 3rd Avenue, Manhattan
When:        Friday 3/11/16 11am till 1pm

 

NYC FAIR

FAMILY ADVOCACY INFORMATION RESOURCE

WE’VE WRITTEN
WE’VE CALLED

NOW WE RALLY
  • When: Friday 3/11/16 11am – 1pm
  • Where: 633 3rd Avenue, Manhattan
    Between 40th and 41st Streets
SHOW OUR STRENGTH
We need a HUGE presence outside the Governor’s office – He MUST fund the increase including money to make sure that staff doesn’t lose ground. 

And Now for the Good News!!!


 

Good Health News

Excellent Health Reports from My Mt. Sinai formerly Roosevelt Hospital Doctors who are the best in New York City!! Got Good News phone calls from both my GYN and regular MD. All my tests came back normal! I’m totally and completely healthy!! My general practitioner did say I do need to drink more water and cut back on starch & carbs. Other than that I’m in Great Shape!!

STEPHEN VINCENT PALMER GOOD NEWS

Stephen attended a “Paint with Friends” party on Feb. 26th. Here is his artwork. Autism is No obstacle to Stephen. He is very creative and ready to express his talents!! Stephen has also successfully tried his hand with photography!  I LOVE MY BROTHER STEPHEN PALMER!!

StephenPalmerArt

 

Stephen will be with me this weekend March 5th & 6th and we will take in a movie and visit local museums.  A great way to end my Chillaxin’ two week vacation!

I have always seen and viewed my brother Stephen in a positive light. For me Stephen is my personal Blessing and gift from God. All of us have some degree of disability.  Autism has been a Plus + for Stephen and me.  Despite naysayer doctors back in 1963 who advised my parents to put Stephen in an institution Mom & Dad ignored the medical profession and raised Stephen to be a contributing member of society. Stephen will be 55 years old on May 3rd and continues to break barriers and amaze me. I know our parents are smiling down from Heaven on us!!

DeBorahandStephen_Dec1961
Me and My brother Stephen December 1961