a caregiving coin has two sides hope and denial

Hope and denial are two sides of the same coin and always have been. Much of what we lived through this past quarter century is likely true for others facing long term progressive chronic disease such as Multiple Sclerosis, or a shorter term diagnoses such as Alzheimer’s.

Transition to the care facility era is less about a continuum of care and more about an inevitable cataclysmic change that precipitates transition.

Denial is seductive. Homecare or bust was essentially a knee jerk ‘macho’ response on my part.

Long term caregiving is hazardous to your health. Now facing my own diagnosis of lung cancer, thoughts of never knowing how Patti’s story ends chase concerns for my own homecare through dark dreams.

Today is the sixth annual World Autism Awareness Day and as a family home caregiver of a quarter century I find my thoughts pausing on the parents and family of all special needs children.

More than me or other spouse caregivers or family members caring for aging parents; these loving parents of special needs children face the daily mathematics of not only their own 'what if', but inevitable 'when' balanced with a smile of encouragement and love for their child to brighten any day and any tomorrow.

Please make a moment today to pause and think of these parent caregivers - they represent the best of us. 

--
Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

lose the stigma of mental health care

Stigmas are creepy little things until they bite you in the ass or kill you.

If I believed the National MS Society or Patti’s neuro back in the 90’s that dementia was not a symptom of Multiple Sclerosis, then myself, our daughter and Patti could all be dead from a stove fire while my wife sat enjoying her lunch - dementia doesn't need a gun to kill.

A ‘perfect storm’ of mental health care looms to rival any epic struggle in our nation’s history. Yet we seem to chase consequences rather than look at causes.

1 in 8 Americans over age 60 are diagnosed with dementia. While Alzheimer’s is the most common other chronic diseases with dementia include Multiple Sclerosis and Parkinson’s.

Simultaneously, rising up like a breaching leviathan is the Age and Autism with 1 in 88 children aging out of the special education school system.

What little mental health resources and time is available for the plethora of other childhood and adolescent anxieties and developmental disorders is being swallowed .

from the Boston Globe,  A list far too long

“Just days after a young man massacred a group of first-graders at an elementary school in Connecticut; Dr. Leonard Rappaport (chief of developmental medicine) sat down with a mother who had brought her 7-year-old son in for an appointment at Children’s Hospital in Boston. …… “That’s impressive,” Rappaport told her. “You’ve got all your Christmas shopping done.”     … It wasn’t a gift list, she explained. It was a list of the mental health professionals she had called to no avail: Either they weren’t taking new patients, or they wouldn’t accept her insurance.     The list contained 66 names. …”

Over 15 million Americans currently are caring for a person with dementia. An estimated 17 million Americans are caring for a child with special needs. The American career focused dream, "Keeping up with the Joneses", is a candle burning out on both ends.

People with cognitive challenges diagnosed or undiagnosed, treated or untreated are discriminated against. Families are too often lied to in the name of optimism or simply the appointment time is up.

Mental health care MUST be available on parity with physical health care.

Mental health care MUST be honest. Mental health care MUST be responsible.  

Most important of all ‘we the people’ need to lose the stigmas. Wearing my “lung cancer survivor” hat I am always pleasantly surprised by the knee jerk support and encouragement from strangers; yet if I was wearing a “depression survivor” hat I’d bet money the reactions would be different.

The stigmas surrounding mental health care in America still shackles careers, haunts families and yes, kills.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

multiple sclerosis caregiving dementia autism mental health

media face of autism

Earlier this month I wrote an entry on the media face of Multiple Sclerosis and its impact on living with MS.

I found a similar concern written by Anne Dachel of Age of Autism, Autistic: Different vs. Disabled and Media Portrayal

... “I came across the story, "Being different: The marvels of the autistic world," … I thought immediately about the countless parents I know in the autism community.  Autism has destroyed their dreams, bankrupted their savings, and shattered their lives.  Who would dare to trivialize their suffering with a title like that? “ ...

  … There is a concerted effort by medical organizations and health officials to make all the sick kids the NEW NORMAL. … We're making autism into something acceptable, just a part of childhood ...

 ... What I see happening is one huge distortion of the term AUTISM.  Clearly, if we label enough people AUTISTIC, the word will lose all meaning ...

 ... The public is being led to believe that autism is something much different from what it really is.  Hidden from sight are the hundreds of thousands kids out there who are struggling with severe autism.  These are the children we never see in the news reports on autism awareness ...

 ... I've noticed over the years that the TV networks along with their big affiliates and major papers don't like to talk about approaching tidal wave of adult autism ...

   

Both Multiple Sclerosis and Autism have recently completed awareness campaigns, yet I would bet money that most Americans could tell you more about a US Congressman tweeting pictures of his body parts than what it is like to live with either diagnosis. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

come dance with Me

Flipping over April on the wall calendar closes ‘Autism Awareness’ month and May welcomes the ‘Prom Season’, but what if … they are the same thing?

Awareness campaigns can be overwhelming and sometimes lost in it all is that people of all abilities can and do celebrate and enjoy who they are.

Join me for a 50 second peek into a special education prom co-hosted by nine local high schools while J & T stayed with us here and autism was a whole lot more than an awareness month.

Shelves could be filled with books about challenges and likewise the tireless effort of parents, teachers, schools, benevolent organizations, volunteers and local businesses to create opportunity regardless of ability.

Yet maybe the Persian poet, Hāfez, writing way back in the 14^th Century said it simplest and best.

The God Who Only Knows Four Words

“Every

Child

Has known God,

Not the God of names,

Not the God of don'ts,

Not the God who ever does anything weird,

But the God who only knows four words

And keeps repeating them, saying:

"Come dance with Me."

Come

Dance”

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

autism: transitioning to the unknown

Like most issues, Autism in the macro view is nearly incomprehensible. Living with autism as a family may even be unimaginable for most.

“In the next 15 years, an estimated 500,000 autistic children will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer. …

“You’re devastated twice: first, with the diagnosis; then, years later, when you realize that after all the interventions, you still have a kid with autism and you have to plan his future.”

That planning process—which begins during a child’s teenage years—is called “transition,” but many parents can’t tell what exactly they’re transitioning to. Only about 3,500 programs are available nationwide for autistic adults, compared with 14,400 for autistic kids. Some are little more than day care, while -vocational programs may consist of participants working for a company in isolation, doing piecework like shredding paper. “It’s not what we want for our kids,” says Jeff Sell, a vice president of the Autism Society and the father of autistic twins. “The situation in many places is sad, disheartening, and disgusting.” Autism’s Lost Generation: Who Will Care For Dana? 

Here in Pennsylvania … "The major problem plaguing Pennsylvania’s system is the care provided after high school. Many young adults have nowhere to go after graduation because group homes and other facilities have years-long waiting lists and the funding for waivers, which allow special needs adults to live independently or semi-independently, is not being increased.” State Rep. Tom Murt to host disabilities awareness walk and resource expo

We had no clue about anything related to autism until Jennifer and Tyler became part of our story. Single parenting a severely autistic child to the age of 18 should be a legacy until itself rather than the beginning of an even longer caregiving unknown.

Frustratingly public awareness campaigns are like leading that proverbial horse to water. Shared story by story, face by face through social media – maybe just maybe the future may have more hope.

teen autism caregiving 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer 

autism awareness: one story at a time

Autism awareness is probably best learned one story at a time.

I found myself reflecting on how living with autism intertwined with our story for 16 months. Smiling at the pictured autistic fashion statement of wearing a head band around one’s chin - it was a unique shared time.

teen autism: why care? a hitchhiker’s guide

teen autism: diagnosis, a hitchhiker's guide  

Reading a story yesterday on the top 10 best places to live for autism and bringing baseball into a metaphor, Jennifer and Tyler essentially went from Red Sox to Phillies back to Red Sox, all in all not to shabby.

Teen autism becomes adult autism just as quick as any teen becomes an adult. Location and immediate future of adult autism services and opportunities was the eventual trump card … soon it will be again

Autism awareness can be confusing. The diagnosis is expansive. People not living with autism may have to turn to their imagination to even begin to get it.

Imagine a child who was, is, and always will be a child –dependent on others. Imagine a world of sounds and noises but no communication. Imagine not a dream within a dream, but living in your world within the world.

Now try to imagine the unimaginable, the parents. In their parallel universe, when their kid hangs up a coat, looks someone in the eye, responds to their name, or earns their first $4 paycheck for half a day of stuffing envelopes the Rocky theme may play even louder as the soundtrack to their pride and joy at the accomplishments of their kid. Though living from diagnosis through 24/7 rest of your life caregiving, they are able to endlessly redefine love.

What can everyone do for Autism Awareness Month? Be aware – learn. If family or friends are living with autism then be proud of them – be damn proud.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Pilgrims, Wampanoag, and hand turkeys

   Who would have thought when those Pilgrims and Wampanoag gave thanks in the autumn of 1621 they were starting the dysfunctional holiday to end all?

   Keep your eyes on people in Pilgrim attire. Only 57 years after attending that first Thanksgiving, the Wampanoag chief’s grandson was sold into slavery.

   While for those descendents of Pilgrims, well this is also the 45^th anniversary of another Thanksgiving Day in Massachusetts, immortalized by Arlo Guthrie, “You can get anything you want at Alice's Restaurant .”

   Bring on the hand turkeys! Kudos to Rethink Autism for their “The First Thanksgiving” project, where children with autism will have a chance to see their own "hand turkey" art featured in an animated cartoon, on the Rethink Autism home page as well as on Facebook, iTunes, and YouTube. Children with Autism Create Thanksgiving Cartoon

   I know caregiving and it can be isolating. This use of social media to create a collective story sounds intriguing. And challenged or not, the eyes of children see the most extraordinary views.

   Oh! Samoset, what were you thinking, when you first walked into Plymouth in Spring, 1621 and greeted the Pilgrims in broken English? Imagine if you had greeted them with this year’s travel salutation, “don’t go touchin’ my junk”? Then again, you were wearing a loin cloth, rather visionary for travel attire.

   Twenty-one Thanksgiving mornings ago Patti who had gone to bed able-bodied, awoke unable to walk, see, barely talk and finished that Thanksgiving Day hospitalized with her first Multiple Sclerosis exacerbation.  … While holding our then 18 month old daughter in my arms, I began the journey of caregiving.

   On Thansgiving Eve 2010, Patti will awake in a care facility requiring the attended care of staff for the activities of daily living and a lift to get out of bed. ... While elsewhere a turkey will awake in the Willard Hotel, be chauffeured to the White House to be pardoned by the President, driven to a new home at Mt. Vernon in a horse-drawn carriage and be greeted with a trumpet fanfare?

… What’s in your Thanksgiving? J

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders