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/

transfer, cluster headache, MS, et al

I believe I know why I write, but I was surprised at what people read the most according to Google over the last 12 months.

              

Caregivingly Yours Top 10

one-person transfer technique, the hug  (March 2010) … there was nothing explaining simply and briefly how to transfer someone by yourself. Associated You Tube video, wheelchair transferring Multiple Sclerosis caregiver, has been viewed almost 12,000 times. 

cluster headache: brain writhing on a corkscrew (May 2009) … originally posted two years ago this entry and associated cluster headache entries are read so regularly I created their own page on my web site cluster headaches 

a caregiver reflects on the R-Word (March 2009) … written two years ago as a commentary on spending of resources it’s seemingly grown cyber-legs.

hope, liberation, and CCSVI (July 2010) … any and all things CCSVI and MS are worth talking about

monster truck wheelchair shopping cart (August 2009) … adventures with inanimate objects seem to hold their popularity J

respite care: teen autism & special needs (August 2009) … daily search results landing on this entry 18 months later have again spawned its own page on CY web site, living with teen autism 

fondue with Uhthoff's Phenomenon / Multiple Sclerosis (April 2010) … I suspect both the nomenclature and story telling make this entry interesting for those searching for affect of heat on MS

Multiple Sclerosis parenting nature vs nurture (May 2010) … no matter how trying the present, the future always trumps. 

teen autism: diagnosis, a hitchhiker's guide (January 2010) … a simplified thumbnail has continuing appeal

midget albino cannibals vs pilgrims and Indians (November 2007) … written over 4 years ago, obviously the Internet is a strange and wonderful place. What kind of a search leads to this?

Caregivingly Yours began as and remains simply our story of trial and error learned lessons. When ‘sharing with’ meets ‘searching for’ in cyberspace - it can get interesting. 


Caregivingly Yours, Patrick Leer 
web site: caregivinglyyours.com 
videos: www.youtube.com/daddyleer 

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 

teen autism: diagnosis, a hitchhiker's guide

Confusion is never good when it comes to support and help. From the outside looking in, yes, teen autism is beyond confusing.

Teen autism has been around. It just may have been diagnosed differently and certainly treated differently. Yet this is now and this is our time.

Autism (from the greek word meaning “self”) was first used in psychiatry in the early 1900’s as a symptom of schizophrenia.

In 1994, the American Psychiatric Association revised their Diagnostic and Statistical Manual of Mental Disorders (DSM-IV).

Following this, the number of students aged 6-21 with ‘autistic spectral disorders’ increased by 885% between 1994 and 2006, while during the same period the population of the United States only increased by 14.7% “New Data on Autism Spectrum Disorders (ASDs) from Multiple Communities in the United States.” CDC 2007

Debating semantics of a health problem is a bit like everyone standing around pointing fingers about what to call the hole in the dyke while the little Dutch boy spends the night plugging it with his finger.

At the crest of this growing wave of children are now teens and young adults unable to care for themselves or even communicate. They need dramatically different resources.

Lacking any psychobabble initials after my name I put together an amateur visual aide for myself with types of teen autism and more familiar IQ scores to better understand.

This hitchhiker has only shared living with severe teen autism and moderate/mild mental retardation to the left of the pictured spectrum. That is what teen autism means to me.

Teen autism resources and services are limited and must be mined by families, too often competitively. A parent living with lower functioning teen autism and unable to leave their teen unattended has less time. Is it fair, no!

Then again, who should get the limited resources? That’s playing God time, and way out of my league.

Bottom line there needs to be more help and support and a lot less confusion.

Caregivingly Yours, Patrick Leer
videos: http://www.youtube.com/daddyleer

respite care: teen autism & special needs

Recently a father emailed me about day care for a teenage son diagnosed with autism. I wish I had a better answer to give than only suggest a method to search for local resources.


Opening our Sunday paper, I was surprised to find this front page story:

PARENTS PRAISE RESPITE CARE

“Finding a sitter for a special needs individual, child or adult, is often impossible,”

In the news story, a parent whose son is diagnosed with autism and mental retardation touches a poignant and pragmatic aspect of special needs respite, helping to prepare transition.

Finding genuine respite may be like finding the Holy Grail for families living with special needs.

From my view, most available activities and programs seem to require a parent in attendance from accompanying a Pennsylvania Department of Mental Retardation aide to Easter Seals social activities such as bowling, swimming, and cooking.

Whether technically respite or not, certainly there is camaraderie to such activities and parent to parent contact, support, and information exchange are invaluable.

Inquiring minds might notice that United Cerebral Palsy hosts the respite center and Easter Seals sponsors the social activities. Googling “teen autism” locally may not even find these resources easily.

Summertime amplifies need because special education takes a vacation.

Summertime traditions may as well be a parallel universe. These are teens and young adults that cannot be dropped off at a pool or amusement park. Camps for special needs are far and few and expensive.

It takes somehow finding the time in a day with no time to mine for gold through the fragments of local information available.

More media attention on caring resources is a special need we all share.
Patrick Leer

Health Activist:

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

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

a caregiver reflects on the R-Word

     As a caregiver you are both a shield against 'others' and an educator to 'others' especially when the person you care for is never unattended.

     Special Olympics unquestionably edgy campaign to end the R-Word today, 03.31.09 frankly is confusing to me.

     Long ago in a language no longer spoken the Latin word for slow, tardus, would eventually evolve to many variations of the R-WORD.

     Trying to draw attention to correct language usage is a tough line to walk at the risk of political correctness in absurdum.

     Oddly the Special Olympic promotional videos depict people using the R-Word as teenage ‘who’s in’ or ‘who’s out’ slang of social status or cliques not directed at or intended to hurt anyone with mental retardation.

     To me, a concern with such a campaign is that others are inadvertently painted with the same brush. State departments of Mental Retardation and The ARC of the United States (aka Association for Retarded Citizens) greatly benefit and assist those who need their help.

     Mental Retardation is a medical diagnosis and people and families NEED help. Lacking adaptive skills or the abilities to speak and understand, a person can be overwhelmed by the simple tasks of everyday life. In living with Autism, Mental Retardation can be comorbid for some.

     Yes, I used an IQ based graph for a visual to DEMONSTRATE the impact of mental retardation. MOST reading this fall between the two tallest blue and green bar ranges.

     I created the inserts for Mental Retardation from Assessment Psychology Online and for Austim Spectrum from Autism, IQ, and the Stanford–Binet.

     Maybe I just do not get the bigger picture or am just too pragmatic in these economically challenged times but millions spent over words could have helped some people and families in need.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

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

musings: Patrick Ponders...