Tag: Autism

The Peregrine

On By dancingpalmtreesIn Uncategorized7 Comments

The Peregrine

Some things are Lost That You don’t Get Back. Thoughts are consumed by memories put on replay. An endless loop of hope filled Happier times.

One always grieves for what and Who is Lost.

Losing yourself is the most deeply felt. Rearranging atoms and molecules.

So many Thoughts went on in Her head as she sat by the empty bed. Sometimes at Night She would lay across his bed not so much for sleep as that had eluded her for weeks, but rather to absorb his scent which was slowly dissolving with passing time.

His bedroom now a divine sacred place where I shower altars with copious tearful offerings.

Fading like dissipated mist. And that bird. Not native to these parts. It first appeared two weeks before his transition. Warbling with all its heart it’s song brought a peace to my suffering child. Eased his pain. Interrupted nonstop seizures.

Comforting my Paradise child through his Souls transition from Time into eternity.

He once terrestrial in the blink of a moment became Celestial.

On the day of the funeral, a Gravesite service entire flocks of various avian species serenaded better than the most skillful singers.

The Groundskeeper

So Many Wrong Doors. Wrong Doors are open while Keys to the correct Doors are Lost.

The Repo man stole Her heart then Her Life. She was found among Laurel and cypress trees.

Ashes to ashes. Dust to Dust. In a daze waiting for someone to wake her up telling Her that it was all a bad Dream. As the Funeral Director guides her through the motions She realizes that this is her New reality.

She is an open wound seeping blood and pus.

Heaven Gains More Angels.

While all Left to She and Her are gravestones marked with Names, birth and death dates. Only Her and She know the story behind the dash.

Yet lately I’ve heard a familiar warbling. A persistent chirp. A persistent breeze turning the spokes of his old bike not ridden in months.

A Vague flash of Angel Wings caressing face engulfing my being with his presence.

Mommy it’s alright now. It’s alright.

I Can Only Imagine by Mercy Me

After Edward Hopper

AM I THE ONLY ONE?

Isolation

Dedicated to Zoey and Cecilia who both lost their disabled children to the Angels of Death.

The Trees are Crying

On By dancingpalmtreesIn Uncategorized7 Comments

I made this painting to honor and give tribute to mostly forgotten and ignored caregivers. The Mom whose son has Autism was especially specifically on my mind.

The general public expects us to be strong and stoic. Never asking for help or even admitting that we also have hopes, dreams and desires. Caregivers are seen as some sort of Superhuman Superheroes. Except that Life is not a series of comic book panels where the Hero can regenerate themselves. We get sick and we die.

We die with our Needs unmet and our Voices forever Silenced.

When we’re in trouble there’s nowhere to go and nobody to turn to. Who cares for the Caregivers?always our Voices are lost because no one hears our cries.

Holidays are especially difficult because you’re under pressure to do so much. Expected to do activities that you can no longer do for whatever reason. Abandoned by family, society and government. .

Yet you Learn Silence with a Smile because that’s what is wanted of you. Like a trained seal that balances a rubber ball on its nose in order to get a stingy ration of one thin bony Fish. Now clap then disappear so that the rest of us can continue in undisturbed comfort.

Tears at The Oasis

Pause for Thoughts

On By dancingpalmtreesIn Uncategorized13 Comments

Pause for Thoughts

This week’s True Highlight

For me this week’s true Highlight happened at the local laundromat in conversation with the mother of a 15 year old son who has Autism. Mostly me listening as She detailed her battles with the City, State, Department of Education, and Housing plus having to work full time. Once I told her that my brother Stephen has Autism and I shared a few photos She felt more at ease to unburden herself.

Periodically She had to call her Son via cellphone to make sure that he got on the school bus. She discussed her hopes and dreams for her Son, Daily Challenges and not enough family support. Her parents the boys grandparents do help but they are getting up in age.

I would guess Her to be in Her late 40s and just like any other young woman She occasionally likes to go out after work to relax with coworkers. However despite the fact that she pre cooks meals that can be easily microwaved her family members who Live in the same building don’t heat the boys food for him resulting in the young man calling his Mother all evening meaning No down time or relaxing for Mom.

I could tell that She is Overwhelmed. In terms of trying to care for my brother Stephen I’m overwhelmed but you must disregard your issues and try to figure out what to do and which way to go.

In August the boy stays with his Dad in the Caribbean. Mom’s only break.

.

No self care. Self care is a joke if you have a developmental disabled child or sibling because even if you don’t Live with the person you are on call 24/7/365. That’s why I personally don’t take any long term or far away trips.

This Mom lives in Public Housing and receives Section 8 which is a city program that provides housing vouchers to low income People. Now this is the type of Housing that this Mom and Her Autistic Son endure, falling ceilings, leaks, broken toilets, peeling paint etc… Yes this is how the city treats this hard working Mom. In New York City you can work yet not be able to afford proper housing.

She also has to instruct her son on how to deal with school bullies. Bullying is a big problem in American schools and bullies pick on any child who looks or acts different.

As far as the Department of Education is concerned they are quick to disqualify your child from much needed services and programs.

Even though I am not Stephen Mom as a sibling who has attended numerous meetings over the last 30+ years it’s a constant battle against budget cuts.

Also I’m getting older and you all know what that means. I choose Not to discuss any of my health or medical problems because #1 this Blog is not a pity party and my health issues are nobody’s Business but mine. However obviously as you age there are less and less things you can do meaning that lately I miss more meetings. Not a complaint but a true realistic statement.

For those of you who have been with me for a while you know that I’m constantly on the phone to our Elected officials trying to get programs and services restored. You know that both Stephen and I along with an advocacy group went up to Albany which is the New York State Capitol where Governor Cuomo resides to meet with as many Elected officials as possible. You also remember a few years ago when on a cold March day I joined myself to a demonstration to protest against budget cuts. We protested in front of Governor Cuomo Office in Manhattan.

Oh Yes I can relate so well to this Mother’s struggle for Her Son. The lack of services for both caregivers and family members who have developmental disabilities. For us there is no respite.

We folded our clothes put the laundry into our respective shopping carts. Talked a little more outside in the cold and this Mom looked so sad that we had to part ways. Each to our own block. Each returning to our own individual struggles and hardships but knowing that at least for a little while we were not alone in Our battles.