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.
.
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.
My number one goal in life is to be a good sister to Stephen.
My brother Stephen is my Soul mate. Every time we are together or when I speak to Stephen over the phone I tell him I Love him.
Stephen Palmer I promise that as long as God gives me strength I will Never Leave your side. We are Life Partners. Like the Sisters in the video we are totally Devoted to each other.
Inside. Rain is bad for my arthritis. Creates more pain. If it rains on a work day or if I have a meeting to attend then I just grin and bare the pain and pass out when I get home. Joint pain is no fun so rain is not my friend.
List at least five favorite treats. (They do not have to be sugary).
Plantain chips
Blueberry muffins
Egg and American cheese on a cinnamon raisin bagel
Italian ices
Yogurt
Where’s your favorite place to take out-of-town guests?
I never have out of town guests but I remember when I was a young girl and my family from Ohio came to New York either my Dad or myself would take them to the famous New York sites. Empire State building and all those touristy places I don’t like. I suppose if someone were to visit me and I had the vacation time to spend with them we’d be going to all the New York Museums which I can get in for Free since I am employed by a NY Museum.
You are trapped in an elevator, who would you want to be trapped with?
That’s something I don’t even want to entertain since it has happened on my job. Not to me but to my co-workers. I have a fear of enclosed places with no escape which is bad because one of my duties when there is a special exhibition opening is to operate the elevator. I know my bosses can see me pacing back and forth inside the elevator. Scary. Ugh. This scenario is a Trigger for my nerves. Reminds me of when I was trapped underground in the subway for over an hour last Jan when the train hit a guy on the tracks. Suicide victim. Horrible.
Given that I have high blood pressure, anxiety and panic attacks I’d pick Jesus because only Jesus could get the elevators to work or take me to Heaven in case I have a heart attack or stroke.
Optional Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?
I got to see Stephen. I had planned for a relaxing three 3 day weekend but that did not happen. The only good part was attending Stephen’s meeting and seeing him. The news about all the layoffs and cutbacks due to lack of funding was depressing. Less and less services and programs for Stephen and the other residents.
The art program has been completely cut. Stephen enjoys art and making drawings, ceramics, etc…. He is no longer going out to as many work-sites because New York State has not provided funding to pay staff to take him to his job sites. Stephen used to attend a special camp for Adults with Autism but that got cut also. So you see my 3 days off was not relaxing in the least bit.
Developmentally Disabled citizens are being kicked to the curb because our American government no longer cares. Many professionals and family members are worried that this is a return to the warehousing of developmentally disabled people that was the norm in the 50s, 60s & 70s. Those of you old enough will remember Willowbrook and the scandal that reporter Geraldo Rivero exposed at that house of horrors.
I wish I was rich and wealthy so I could donate money to hire more staff and return the arts, camps, work-site/work readiness programs that make the lives those with developmental disabilities fulfilling.
Now anybody who has been reading my blog posts over a period of time knows that even though I’m on Team Love that I am Not on Team Sucker or Team Doormat. I am a Soldier (U.S. Army 1977-1981) A Warrior ready to fight for my people. I will battle for All peoples who have been disenfranchised!
“You may not be interested in war, but war may be interested in you.”
– Leon Trotsky
Then it’s on Like Donkey Kong!!
I will fight and do battle as did my Biblical namesake!!!
Judges 4-5
New King James Version (NKJV)
Deborah
(See the Full Biblical text below)
However I do most of my fighting with my pen because as the expression goes the Pen is mightier that then sword.
4 When Ehud was dead, the children of Israel again did evil in the sight of the Lord. 2 So the Lord sold them into the hand of Jabin king of Canaan, who reigned in Hazor. The commander of his army was Sisera, who dwelt in Harosheth Hagoyim. 3 And the children of Israel cried out to the Lord; for Jabin had nine hundred chariots of iron, and for twenty years he had harshly oppressed the children of Israel.
4 Now Deborah, a prophetess, the wife of Lapidoth, was judging Israel at that time. 5 And she would sit under the palm tree of Deborah between Ramah and Bethel in the mountains of Ephraim. And the children of Israel came up to her for judgment. 6 Then she sent and called for Barak the son of Abinoam from Kedesh in Naphtali, and said to him, “Has not the Lord God of Israel commanded, ‘Go and deploy troops at Mount Tabor; take with you ten thousand men of the sons of Naphtali and of the sons of Zebulun; 7 and against you I will deploy Sisera, the commander of Jabin’s army, with his chariots and his multitude at the River Kishon; and I will deliver him into your hand’?”
8 And Barak said to her, “If you will go with me, then I will go; but if you will not go with me, I will not go!”
9 So she said, “I will surely go with you; nevertheless there will be no glory for you in the journey you are taking, for the Lord will sell Sisera into the hand of a woman.” Then Deborah arose and went with Barak to Kedesh. 10 And Barak called Zebulun and Naphtali to Kedesh; he went up with ten thousand men under his command,[a] and Deborah went up with him.
11 Now Heber the Kenite, of the children of Hobab the father-in-law of Moses, had separated himself from the Kenites and pitched his tent near the terebinth tree at Zaanaim, which is beside Kedesh.
12 And they reported to Sisera that Barak the son of Abinoam had gone up to Mount Tabor. 13 So Sisera gathered together all his chariots, nine hundred chariots of iron, and all the people who were with him, from Harosheth Hagoyim to the River Kishon.
14 Then Deborah said to Barak, “Up! For this is the day in which the Lordhas delivered Sisera into your hand. Has not the Lord gone out before you?” So Barak went down from Mount Tabor with ten thousand men following him. 15 And the Lord routed Sisera and all his chariots and all his army with the edge of the sword before Barak; and Sisera alighted from his chariot and fled away on foot. 16 But Barak pursued the chariots and the army as far as Harosheth Hagoyim, and all the army of Sisera fell by the edge of the sword; not a man was left.
17 However, Sisera had fled away on foot to the tent of Jael, the wife of Heber the Kenite; for there was peace between Jabin king of Hazor and the house of Heber the Kenite. 18 And Jael went out to meet Sisera, and said to him, “Turn aside, my lord, turn aside to me; do not fear.” And when he had turned aside with her into the tent, she covered him with a blanket.
19 Then he said to her, “Please give me a little water to drink, for I am thirsty.” So she opened a jug of milk, gave him a drink, and covered him. 20 And he said to her, “Stand at the door of the tent, and if any man comes and inquires of you, and says, ‘Is there any man here?’ you shall say, ‘No.’”
21 Then Jael, Heber’s wife, took a tent peg and took a hammer in her hand, and went softly to him and drove the peg into his temple, and it went down into the ground; for he was fast asleep and weary. So he died. 22 And then, as Barak pursued Sisera, Jael came out to meet him, and said to him, “Come, I will show you the man whom you seek.” And when he went into her tent, there lay Sisera, dead with the peg in his temple.
23 So on that day God subdued Jabin king of Canaan in the presence of the children of Israel. 24 And the hand of the children of Israel grew stronger and stronger against Jabin king of Canaan, until they had destroyed Jabin king of Canaan.
The Song of Deborah
5 Then Deborah and Barak the son of Abinoam sang on that day, saying:
2 “When leaders lead in Israel, When the people willingly offer themselves, Bless the Lord!
3 “Hear, O kings! Give ear, O princes! I, even I, will sing to the Lord; I will sing praise to the Lord God of Israel.
4 “Lord, when You went out from Seir, When You marched from the field of Edom, The earth trembled and the heavens poured, The clouds also poured water; 5 The mountains gushed before the Lord, This Sinai, before the Lord God of Israel.
6 “In the days of Shamgar, son of Anath, In the days of Jael, The highways were deserted, And the travelers walked along the byways. 7 Village life ceased, it ceased in Israel, Until I, Deborah, arose, Arose a mother in Israel. 8 They chose new gods; Then there was war in the gates; Not a shield or spear was seen among forty thousand in Israel. 9 My heart is with the rulers of Israel Who offered themselves willingly with the people. Bless the Lord!
10 “Speak, you who ride on white donkeys, Who sit in judges’ attire, And who walk along the road. 11 Far from the noise of the archers, among the watering places, There they shall recount the righteous acts of the Lord, The righteous acts for His villagers in Israel; Then the people of the Lord shall go down to the gates.
12 “Awake, awake, Deborah! Awake, awake, sing a song! Arise, Barak, and lead your captives away, O son of Abinoam!
13 “Then the survivors came down, the people against the nobles; The Lord came down for me against the mighty. 14 From Ephraim were those whose roots were in Amalek. After you, Benjamin, with your peoples, From Machir rulers came down, And from Zebulun those who bear the recruiter’s staff. 15 And the princes of Issachar[b]were with Deborah; As Issachar, so was Barak Sent into the valley under his command;[c] Among the divisions of Reuben There were great resolves of heart. 16 Why did you sit among the sheepfolds, To hear the pipings for the flocks? The divisions of Reuben have great searchings of heart. 17 Gilead stayed beyond the Jordan, And why did Dan remain on ships?[d] Asher continued at the seashore, And stayed by his inlets. 18 Zebulun is a people who jeopardized their lives to the point of death, Naphtali also, on the heights of the battlefield.
19 “The kings came and fought, Then the kings of Canaan fought In Taanach, by the waters of Megiddo; They took no spoils of silver. 20 They fought from the heavens; The stars from their courses fought against Sisera. 21 The torrent of Kishon swept them away, That ancient torrent, the torrent of Kishon. O my soul, march on in strength! 22 Then the horses’ hooves pounded, The galloping, galloping of his steeds. 23 ‘Curse Meroz,’ said the angel[e] of the Lord, ‘Curse its inhabitants bitterly, Because they did not come to the help of the Lord, To the help of the Lord against the mighty.’
24 “Most blessed among women is Jael, The wife of Heber the Kenite; Blessed is she among women in tents. 25 He asked for water, she gave milk; She brought out cream in a lordly bowl. 26 She stretched her hand to the tent peg, Her right hand to the workmen’s hammer; She pounded Sisera, she pierced his head, She split and struck through his temple. 27 At her feet he sank, he fell, he lay still; At her feet he sank, he fell; Where he sank, there he fell dead.
28 “The mother of Sisera looked through the window, And cried out through the lattice, ‘Why is his chariot so long in coming? Why tarries the clatter of his chariots?’ 29 Her wisest ladies answered her, Yes, she answered herself, 30 ‘Are they not finding and dividing the spoil: To every man a girl or two; For Sisera, plunder of dyed garments, Plunder of garments embroidered and dyed, Two pieces of dyed embroidery for the neck of the looter?’
31 “Thus let all Your enemies perish, O Lord! But let those who love Him be like the sun When it comes out in full strength.”
Espiritu en Fuego/A Fiery Spirit 