The entire world is Neurodiverse
My daughter was born with a rare genetic syndrome called Cornelia de Lange Syndrome.
She is considered less effected because she doesn't have any health issues, limb differences and is quite tall and talkative compared to many others with CdLS.
When she was in her teens the geneticist wondered if perhaps she should be given a dual diagnosis of Autism. We never had her officially diagnosed but she definitely had similarities with some other Autistics and we attended the same therapy sessions or programs as many of her friends with Autism.
As she got older, I found it harder for her to develop and nurture friendships. The "neurotypical" kids were now involved in more mature, hormone driven adventures. They didn't share my girls interests anymore. Nor did she share theirs. But, she still wanted and deserved the social interactions and opportunities that her sisters had.
I found it frustrating and disappointing trying to arrange play dates or activities with other kids in her Spec. Ed class or on her Special Olympics Teams. Families were either, too tired, too busy, too scared or too unaware of the importance of friendships.
I started a group for Special Needs youth and young adults. I planned events and outings that would appeal to a wide variety of her friends. Activities that could be modified to suit all abilities, if needed. Things like Bowling, Cooking Classes, Dances and meet ups. I recruited some high school and college students who wanted to come out and help host the events. Who wanted to help make our time together more inclusive, social and safe. For anyone that was independent enough to stay on their own, they were welcome to. For others, they could bring a support worker along.
It started out with 5 or 6 friends and has grown into a network of over 200 families.
Of coarse we have a wide variety of disabilities or differences in our group but a large number of our members are Autistic.
It's through running this group that I have discoverd how truly neurodiverse we all are.
What I have learned is:
Autism (as with all "disorders", syndromes, diagnosis) does not present itself in any "typical" manner. Just because you know one Autistic, does not mean you know anything about another. (as with, men, women, Hispanics, Catholics, diabetics etc.)
The terms "high functioning" and "low functioning" are misleading and adverse. I am high functioning compared to what?
There are a lot of differing opinions in the Autistic community on what is acceptable or helpful therapy, treatment, wording etc. They are all right because we are all different and what works for one, doesn't work for another. How I feel or see things, is different than how you do.
There needs to be a TON more understanding and acceptance of Autism and ALL neuro-differences.
When some people hear Autistic they think, RainMan, Temple Grandin or Savant. Or they may think of someone who Doesn't have eye contact or stims a lot. Autism is all of these things or and none of these things and more than these things. Autism is PEOPLE. People who are quiet, people who are loud. People who are funny or shy or successful or rich or poor.
Autism is my daughter, my step sister and her husband and their daughter. Autism is my friend, my neighbor, my massage therapist and the cashier at my local store.
There is no end to the sky and the waters. How well they accompany sadness.
The sea and sky, both ever changing blues.
Shades for each kind of sorrow.
Tears falling in a rainbow of hues.
A lonely vastness, of wind and waves.
Rolling over heartbreak and memories.
Crashing into long abandoned graves.
Silent heavens and passive tides,
Sharing a peaceful moment.
Unaware of the comfort it provides.
The Tree of Doubt
Hope and Anxiety sitting in a tree,
First comes courage,
then comes fear,
then comes that little voice you always hear.
I’m so tired... (Predictive text poem)
I’m so tired,
of my cell phone.
I just wanna say hello
I wanna say hey you guys.
I just wanna.
I‘m so tired,
I don’t know,
how much the girls and I will do.
I don’t think I’m going.
I don’t wanna.
I‘m just so tired.
Showing shapely shoulders,
GrandMother, Mother, Daughter
One of her hands in mine, one in yours, we shared her final breath, united.
No Day At The Beach
Is there anything more demoralizing than swimsuit shopping?
Flicking through racks of skimpy bikinis,
I haven’t been able to wear since I was a teenager.
Before my breasts became soft and heavy,
Before my legs turned into pale and puckered drumsticks.
Before too many servings of potatoes and gravy,
too much pie and ice cream.
A desk chair and sofa cushions replacing
an abandoned treadmill and forgotten dance moves.
I snatch a couple of full coverage one pieces,
and drag myself into a dressing room.
Stuffing myself into the first one,
I glance at myself, in the mirror, bent over,
struggling to pull the spandex above my hips.
Tucking in the rolls I swore I’d never have.
I don’t recognize the buldging reflection.
Where is the young girl so full of vigor and hope.
so full of confidence and grace?
Is there anything more motivating than swimsuit shopping?
HAPPY Hallowee’n ;)
It Is Meant to Be
This is where I am meant to be,
the place that needs me most.
Or is it that I need this place?
Whichever, it’s my life’s post.
To mix and linger with these souls,
Whose paths have crossed with mine.
Tis the destiny awarded me,
Or perhaps it is the fine.
Has an act of Karma been at work?
To fulfil good deeds of past.
Or the execution of ill intent,
This life’s rebirth, the last?
No matter, I’m here and I belong,
to teach, learn and connect.
My purpose will show itself,
in my profound and simple affect.
Life is a Serious state of mind.
Each breathe is a gift,
We all live on borrowed time.
Lead a thoughtful life.
In joy and in rue,
Do everything with passion.
It's no rehersal.