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.
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.
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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.
As some of you may know my brother Stephen Palmer is developmentally disabled but he does not let that stop him from enjoying life. Autism? What autism? He works and has a full social calendar. I should be so lucky!! LOL!
Stephen received an excellent report from his teachers and instructors at AABR. Stephen has 20/20 vision. No diabetes. His high blood pressure and cholesterol are under control. At age 52 he is in perfect health. Stephen always enjoys expressing himself through art. He likes to draw so I will get him some art supplies.
He uses his stipend to romance 2 ladies, Maxine and Robin. Robin is his dance partner at QCP Friday night social. They probably spend lots of time dancing to Michael Jackson who is Stephen’s favorite singer/entertainer. Stephen also likes to but Cologne and sunglasses. He’s living la vida loca!
Even with some cognitive difficulties Stephen is able to make his needs known, perform janitorial work at various locations, enjoys a fitness program that includes walking the treadmill, lifting weights, swimming and learning to play soccer.
To make himself understood he uses his own form of sign language. Obviously it works for him and Maxine and Robin are happy to enjoy Stephen’s company. LOL!! My brother the Ladies Man!!
To all the doctors who back in 1963 told our parents Edward & Mable Palmer that Stephen at only age two was hopeless and would not be able to learn or improve, to just put him away in an institution, God is laughing at you now!! Praise God that my parents did not listen to the doctors negative reports but took Stephen home and raised him in a normal, happy, loving home environment. Stephen has surpassed all expectations and I’m sure our parents are smiling down from Heaven at his amazing progress. To all parents and siblings of special needs children ~ BELIEVE! Believe in God, yourself and most of all your child’s ability to overcome any disability and go beyond any medical diagnosis!!
Espiritu en Fuego/A Fiery Spirit 