I stood in the kitchen chatting with Lauren and a staffer for a while. When I was about to leave I noticed a large, red laundry bag in the hallway.
I asked, "Whose bag is that?" The staffer responded that the bag contained her family's laundry that she brought from home.
She went on to say that; she "planned to wash the clothes when she was just sitting around".
Can't make this stuff up!
Keeping it real,
Donna
The staffer went on to ask me to get dish towels with fruit on them as some staff don't know where plain colored ones go. Staff often put plain ones in Lauren's bathroom closet.
So, I'm off to find dish towels with fruit on them....
Keeping it real,
Donna
I couldn't make this stuff up if I tried!
Keeping it real,
Donna
For some reason, Lauren just couldn't get the hang of pedaling a bike. We tried and tried along with many therapists, program staffers and in-home support staff. Nothing worked until Lauren met Chris Harbur from Let's Go Play NY!
And as they say, the rest of the story is history:
https://drive.google.com/file/d/1C4DDfcZnkyT4pF0pk3gxqVod7-UNO6tr/view
Never give up!
Keeping it real,
Donna
Section 504 is a civil rights law that prohibits discrimination against individuals with disabilities and ensures that children with disabilities have equal access to an education. It was passed in 1973!!!!
I remember when Lauren was in pre-K at an elementary school. She received
physical therapy as part of her IEP. The physical therapist who covered schools
in our area went on maternity leave. This resulted in no PT services for Lauren
and all of the children who received physical therapy in the schools the
PT covered.
So..... I filed a Civil Rights complaint against the school district. Long story short after an investigation and visits from attorneys from the Atlanta regional office of the U.S. Department of Education, they ruled in our favor! The ruling required that all of the impacted students receive compensatory services.
In a different set of circumstances, Covid-19 related issues have left children with disabilities at home and often not receiving any services. Remote delivery of services is not appropriate for many students.
This situation has resulted in appeals to judges and state departments of education, student regression ----and many questions, some without answers.
Is it the school districts fault when they do not provide services during a pandemic? Is it the school districts fault that the bureaucracy was not prepared? Can the school district demonstrate good faith efforts to contract with home care agencies to provide services? Are compensatory services indicated?
The following piece from NPR explores the situation.
https://www.npr.org/2021/06/16/994587239/after-months-of-special-education-turmoil-families-say-schools-owe-them
Appreciate hearing your thoughts.
Cheers!
Donna
I just learned that Dr. Lou Brown, a leader in special education and vocational rehabilitation services passed away. Years ago, I met him at a conference. An incredible person, teacher and mentor for so many.
He would say funny, outrageous things at his presentations. He had the ability to get people to think about their preconceived notions. He was also instrumental in founding the non-profit TASH About TASH - Tash.org
He helped people with severe disabilities find jobs. Even people with limited mobility. He told the audience about a young man who was blind and had other disabilities.
Everyone thought he was crazy when he got the young man a job in a coffee factory. He could smell and that was all he needed to know how to do to differentiate the kinds of coffee.
Dr. Brown believed that everyone can contribute to society through "job carving". This strategy analyzes work duties in a given job and then identifies specific tasks that could be assigned to an employee with disabilities. This was radical thinking 40 years ago.
So what do coffee beans have to do with job carving? In a word, "everything"!!!!
Rest in peace, you will be missed Dr. Brown 🙌
Keeping it real,
Donna
In spite of this response, Lauren's supported living coach pushed for an interview and opportunity to meet Lauren. The interview was short and resulted in being told that the program wasn't in need of any volunteers. The door was closed....no trial opportunity....just the clear message-- you are not welcome here.
In Amanda Gorman's poignant 2021 inaugural poem, "The Hill We Climb" she stated,
"Scripture tells us to envision that everyone shall sit under their own vine and fig tree, and no one shall make them afraid.
If we’re to live up to our own time, then victory won’t lie
in the blade, but in all the bridges we’ve made.
That is the promise to glade, the hill we climb,
if only we dare it, because being American is more than a pride we inherit —
it’s the past we step into
and how we repair it."
So I ask, how can we help to "repair" our religious institutions and make them more accessible to all among us? The hill remains steep for inclusion and acceptance.
Keeping it real,
Donna
Trays of deviled eggs were always part of the extended family's Easter tables in spite of knowing how allergic Lauren was and how hard it was for us to keep her away from them. Oh well that's a topic for another day!
We held our family Easter dinner at Lauren's apartment this year, so of course we brought a plate of Jello eggs.
She was so excited to see them that she grabbed one and swallowed it whole--before we could get it from her!
She looked at us like, what's the big deal and said, "Delicious"!!!
Keeping it real,
Donna
Anne Lacaton and Jean-Philippe Vassal, are this year's
winners of the most prestigious award in architecture, the Pritzker. These French
architects approach their work with kindness, which means never tearing down
buildings to implement their own grand visions.
“When Lacaton and Vassal were asked to redesign a
particularly large and hideous public housing bloc in
Bordeaux in 2017, the residents told them they did not want to move,
even temporarily, but they wanted bigger units. The solution, devised with
fellow architects Frédéric Druot and Christophe Hutin, was to encase the
building in large outdoor terraces, adding sliding glass doors to each unit,
and remaking the exterior from drab concrete to something gleaming, modern and
alive. Suddenly, everyone had roomy outdoor space, some of which was enclosed
to be used during the winter as "winter gardens."
"The firm's approach of cost-effective, creative readaption
could be a model for urban planning in the U.S., Wilson says, where
demolition's been seen as a solution to deteriorating public housing in such
cities as Chicago and St. Louis."
When we think about housing for adults with disabilities, why do many think first of new construction. Don't we have enough existing apartment buildings, homes and duplexes that could work with this "kind" of architecture?
Read or listen to more at:
Keeping it real!
Donna
In 2017, Lauren met twins, Taylor and Morgan, and their younger sister, Madison.
The family was on vacation visiting family in Florida. It was "love" from the beginning!
During subsequent visits, the "girls" went swimming and to the movies. They got pedicures, shopped at Publix and took the group picture on the sofa.
While apart, they send gifts, cards and talk on the Facebook Portal.
During their last visit, they taught Lauren to put sprinkles on her frozen yogurt and on theirs!
This post really isn't about frozen yogurt and sprinkles... it is about so much more. The girls from Texas have enriched Lauren's life beyond words....
Keeping it real!
Donna
Lauren learned to swim before she learned to walk. She doesn't use the crawl or breast stroke. Like most things, Lauren has her own style. She typically swims across the pool to the deep end, holds on to the side of the pool with one arm and splashes the water with her other arm. 
