persecution and humiliation / MS in the workplace

If life were a Clint Eastwood western an avenging rider would thunder into the Pioneer Valley of Massachusetts. 

“Debra Caldieri, 48, who suffers from multiple sclerosis, said she received a letter from School Superintendent Gus Sayer last week informing her that she has been taken off medical leave and terminated.” South Hadley teacher Debra Caldieri, friend of late freshman Phoebe Prince, fired

 “Caldieri believes her downfall at South Hadley High School in Massachusetts is connected to her relationship with Phoebe Prince, a 15-year-old freshman who hanged herself in January of 2010."  

"Prince’s suicide ... sparked an international campaign against school bullying and put the media spotlight on South Hadley and its social dynamics. “

Caldieri is credited by Phoebe Prince‘s family as one of the few people who reported the bullying that led the teenager to take her own life and broke Sayer‘s mandate of silence when she cooperated with police investigation.

According to Caldieri, symptoms of her multiple sclerosis were exacerbated by stress she endured due to related workplace bullying by the South Hadley High School principal Daniel Smith and Sayer.

Extended medical leave has left her unable to support herself or family. With friends helping her with rent and insurance premiums and less than three weeks after she spoke out on bullying in the workplace on Beacon Hill (Massachusetts' metonym for their State government) the school system only had one last coffin nail to drive – they fired her.

When someone in a wheelchair ‘stands up’ for those who cannot stand up for themselves and gets smacked down – you do have to ask yourself where have all the cowboys gone?

Then again it’s not a fictional town in the old ‘West’, it’s a real town in modern Western Massachusetts – 

“The persecution and humiliation of Deb Caldieri, the teacher who responded to the suicide of Phoebe Prince with a compassion so utterly lacking elsewhere in South Hadley High School, is complete. …” Boston Globe: Cruel lesson for a teacher

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

‘tis the season for Multiple Sclerosis

What is it with Boston and the seasons of the year?

James Taylor, born in Boston, put them to rhyme

“Winter, spring , summer, or fall,

All you have to do is call”

Brigham and Women's Hospital in Boston recently studied the seasons in relation to Multiple Sclerosis.

Participants had MRIs weekly to monthly over the course of a year. The study found that disease activity varied with the seasons.

In the spring and summer months, people with multiple sclerosis are at a two to three times greater risk for disease activity. 

"Our results showed that the appearance of lesions on brain scans was two to three times higher in the months of March to August, compared to other months of the year." Dr Dominik Meier

Seasonal prevalence of MS disease activity 

Besides seasons they also factored in daily weather conditions and found that warmer temperatures and solar radiation were linked to disease activity, while precipitation was ‘no problemo’.

Now trying to share this ‘news’ with Patti on a 90°F (32.2°C) hot and humid summer evening got a big “duh” out of her about the study yet a more spirited conversation over James Taylor music. She enjoys and I, well … (One good thing about pushing a wheelchair is you can make faces while listening to someone talk.)

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

teen autism: soon it will be again

Sharing a home with teen autism and repeatedly hearing phrases such as “soon it will be again” never ceased to intrigue me. Communication challenged or insight?

Early in July, J & T returned to Massachusetts after almost two years here in Pennsylvania. … Soon it will be again?

Immediate needs of individual caregiving swallowed the idealism of two long term caregivers as mainstays for each other.

Living with teen autism is above all about autism, 24 hours a day, 7 days a week.

States herald programs and services. Reality is a picture painted by funding or lack thereof. Services and programs are as necessary as air to breathing.

One summer in Pennsylvania rippled for months through both their lives. With only half a day, three days a week of summer school special education contrasted with full day, 5 days a week in Massachusetts routine cracked. For Tyler that meant anxiety surged. For Jennifer as a single parent school hours are the ‘the work day’; a loss of the majority of income for even a couple months impacts everything.

More significant is what may or may not be available when Tyler turns 21, only 3 years away.

Less now is not likely to become more later. As a parent you do whatever it takes for your child.

Back when Tyler was diagnosed with autism the prevalence was 1 per 384 children. NIH recently used the prevalence of one in every 91 children.

We are only seeing the tip of the iceberg of autism thrusting up into adult age and the quest for adult services.

As dependent adults what will they do, where will they go?  Can you even imagine how poignant those questions are for a parent?

These are extraordinary parents who have nurtured their younger child time after time beyond what they were told their child would never do.

Parenting a teen as most know it is about nurturing independence. 

Parenting teen autism is about preparing to grow old with autism.

“Soon it will be again.” 

Caregivingly Yours, Patrick Leer 

videos: http://www.youtube.com/daddyleer