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.
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Espiritu en Fuego/A Fiery Spirit 
motherhood is a hard job, even without all the hoops and loops to jump to get help from a service that should be available no matter.
Yes. I agree but Sadly that’s not the case. In fact not too long ago there was an article in the New York Times about how disabled kids fall through the cracks. The Safety Net has gaping holes. Unless of course you are rich. The wealthy can afford the best care for their disabled relatives.
The Mom does get a break during the month of August when the boy stays with his Dad in the Caribbean.
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I am glad she found you, DeBorah. Being able to talk with someone who really knows what she is going through, I hope, was unburdening for her. You are the best advocate for Stephen. It is most aggravating how the government works. Or does not.
Yet we both return to the same struggles. Sometimes I wonder what will happen after I’m gone. The point is that nobody advocates for caregivers. When we’re in trouble there’s nowhere to go and nobody to turn to. Right now I have more days behind me than ahead of me. Who cares for the caregivers? As always our Voices are lost because no one hears our cries.
On the other hand I suppose that I am a kindred spirit. My heart goes out to both she and Her Son. The Holiday season makes life even more difficult.
Same problems everywhere. I guess here in Ghana, people who live in the same compound can help if they are not afraid of spiritual attachments. It’s a sad life.
Yes it is. What makes it a shame is that the United States especially New York City has the resources and funding available to rectify the situation.
Well, that is a real shame. Here, there is no real help. The district which helps is through some very shaddy corrupt people that it is sickening.
Too much bureaucracy and red tape. The help is there but parents and caregivers must fight to get those programs and services. The government makes its citizens Jump through hoops to receive much needed assistance for their disabled relatives.
Too bad.
True.