Despair, Hope And Imagination

  Thoughts on Hope.

I recently watched a video from Alain de Botton's, "The School of Life" on getting out of a despairing mood. It suggested hope as can come from imagination as a possible route. 

 

       I've painted and written, yet I don't see myself as containing a font of imagination. I follow such a pattern in painting that I wondered if I possesses even a spec, yet it turns out I have a lot!

    Worry is the evidence I can conjure imagination and profusely. It's more a gusher than a font. It's more difficult, however to imagine pleasant things in the midst of fear. I've thought a lot of movies lately and how we must suspend our belief in reality in order to experience the story and the emotions likely in the characters. This suspending of our reality may be just what it takes to dream again.

     I don't hope or dream, not in the sense of wishing for any person, thing or circumstance I don't already have. I don't long for some situation where I would no longer be me, having self-proved, "Wherever you go, there you are," far more times than those quicker on the uptake. 

     I didn't suddenly become unaware of societal standards for the dreams I ought to have. I just learned to laugh at myself more. I've a grand crush on reality in all it's annoyances and splendor. I'm grateful, and without expectation. I used to experience what I've heard called a "Divine Dissatisfaction" as described by Father Ed. Dowling, a Jesuit Priest from St. Louis circa 1930. I felt restless. I didn't know what I should want. I only felt something was missing. Hope, for me is an excellent stage for disappointment. This restlessness right in the middle of happiness or peace gave me a small space not to dream of something from the limits of my imagination, but that there might be some wonder I wasn't yet capable of imagining. If I'm so content, what's my worry with dreaming? Becoming content is not an easy path, because you have walk through giving up all the way to seeing what's right here in front of you bloom. It isn't done in an afternoon, and can take a lot of loss. The world has been through enough loss lately. I think they need to dream again...to hope. I was feeling quite alone in my affair with the present moment when I saw a friend had posted a loved poem by Mary Oliver. 

Wild Geese 

 "You do not have to be good. You do not have to walk on your knees for a hundred miles through the desert repenting. You only have to let the soft animal of your body love what it loves. Tell me about despair, yours, and I will tell you mine. Meanwhile, the world goes on. Meanwhile the sun and the clear pebbles of the rain are moving across the landscapes, over the prairies and the deep trees, the mountains and the rivers. Meanwhile the wild geese, high in the clean blue air, are heading home again. Whoever you are, no matter how lonely, the world offers itself to your imagination, calls to you like the wild geese, harsh and exciting -over and over announcing your place in the family of things." Mary Oliver

    I'd be an absolute hypocrite if I too didn't dare dunk my toes back in that ocean, dangerous as it may be. Now -what to dream? I could dream of more moments, not of things on the outside but expanding the inside, of seeing my own heart in more leaves, flights of birds and trees. Wait! Maybe I could dream others get what they want. Maybe I can dream peace of mind for everyone or would you rather something else? 

   A new job, car, home, love, that the pandemic go away? I wish, if they'd give you peace that I could give all of these. Maybe, then peace of mind is the path to all of our dreams and more. The car that would make us feel enough, the house with prestige, the end of illness and poverty, the romance that would give us a sense of home. All of these are temorary sensations, unless be bring serenity with us.

 I dare say, researchers for a cure approach their work with a clear mind and exacting focus on the moment too.  

   You and I may not be in the laboratories, but we may be among the families and friends, coworkers and even internet acquaintances of those who are. If my life is in their hands, it seems I'd do best to add whatever peace I can to their work, by simply taking care of my own serenity. The same goes for our effect on loved ones and those loading our groceries. Please don't underestimate the widespread need and healing effect of your own self care. Our own peace of mind can add to and even save the lives of others. All of us are touched by this disease, and to my mind, it's going to take all of us to get through it.

      We as humans have been through so much grave loss. I am so sorry for all that we have and will go through. For now, I find comfort in the moments of peace, the breeze, the turning leaf, and my fallible effort to comfort others. I can't stop all of this pain, but with all I have, in my heart, I sit with you. If not now, the time will come to feel it all, and it's mine to promise you, there is another sunrise after all of this, and there will be more reason to hope and dream.

 tinajonesart

Hero

If you get out of bed one more day, 

   if you try the first time or one more time,

 if you fail and discover one more way not to do it, 

   if your palms sweat and your heart races every time, yet you begin again,

if you fall apart on a regular basis and tremulously crawl to wash your face,

   if you've been defeated a hundred times and given up just as many,

if you have despaired of ever knowing peace,

   if you've found the flow or the right direction only in accidental moments,

if in your pain you've found solace somehow in helping another, and in the midst of watching the world you knew disintegrate, saw a bit of heaven in the eyes of those less fortunate,

   if somehow all was right with the world even when all evidence said you were wrong,  it was wrong, they were wrong,


if unreasonable hope ever bade you, "Breathe, and try again," 

   if while not believing in yourself, you believed in another, and
 if while helping right in the middle of your own helplessness you've found that you took even a single aim toward a single step without realizing,

   You are a hero to me.

 tina jones

Being the Help We Seek: for Caregivers and Autistic People

"Perhaps they never will" Don McLean
  Those words resonate through my being ever time I talk to a parent of an Autistic child. They are trying as hard as possible to get people to listen, and in their trying...sometimes they can't hear the children with Autism. For the children who may not be as eloquent as others and for those who can't speak, it is left to us as ASD adults to share what we hear and feel, how we experience the care of those around us. In this way we can build bridges of understanding, and hopefully unite those with Autism and those who loves us. Then, perhaps progress can begin.
    Following is how I've experienced the pain of caregivers in different areas of my life, be they parents, spouses, friends, coworkers...etc.
  To the Caregivers: Though your love knows no bounds, and though you sacrifice, please know that even an ASD child may be totally mute, they hear every word you say. They see every time you hurt yourself by not getting the help you need in favor of desperately trying to help them.
  Somewhere along the line it's gotten backwards. Families are becoming depressed, sometimes neurotic and if you've seen the news lately, some have been suicidal and a few have committed homicide. Please, do not think you're exempt. I do not believe than any one can be a 24hr a day caregiver and not experience at least times of being emotionally unstable. Even therapists who work 8 hr days are required to get therapy. Though you love so deeply, please know that there is no more effective way to harm a child than to harm his mother or father or other caregiver. To love us, you must, must, must take care of you first.
  All too often the focus gets put so much on our Autism that sometimes very ill caregivers have gone past the emergency stage in needing help for themselves. You cannot give what you haven't got. You cannot help us without helping yourselves first.
   I realize there is little time. I realize this sounds like the utmost in selfishness, but if you don't take care of you, I will be reading your story in the obituaries. It may be suicide or any number of physical illnesses born of your stress, worry and sacrifice that will take you, and that would be sad for me and the many you may not realize that love and need you to take care of you.
   I know how many have turned to Autism organizations, and I know they are asking for extra dollars, when you haven't seen the site of an extra dollar in years. I know you've given your time to them, and I know they've used you to raise extra money for themselves and for research that is doing nothing to help you in this emergency moment.
    If you so much as think in terms of ending your life or someone else's, please contact a mental health professional! If you have a plan to end your life or someone else's, get someone to bring you directly to the hospital. If you are convinced you want to do it, and it is the only choice, why not wait a day and give the people a chance to come up with a better solution? Admit it may be possible that you might not know everything, you may not have seen all of the options. Let someone else try.

  To us Autistics: Society has so far not done a lot to help us. I'm with you there. Monstrous amounts of money are being raised in the name of Autism, and you're not seeing any of it effect your life. Families are trying and either getting more on your nerves daily or breaking your heart as you watch them hurting themselves. We aren't doing it to them, and we can't save them, but we can help!
   Let me recap. Society isn't helping, families can't do any more than they are doing. Looks pretty bleak, doesn't it? No.
  What we, all of society including those who love an Autistic person, and Autistic people themselves have been doing is NOT working.  I am going to flip everything and shine the light in another direction. Ready?
  You, the person with Autism may be the light at the end of the tunnel. Help is desperately needed. As an autistic person, I have things to offer. I can't do everything, but I can do some things, and some very well.  I may be the one that calls the authorities on my own family if they get nuts and start talking suicide. I may have to be the one to say, "Mom/Dad, Sister, Brother, if you don't get help, you cannot help me." I may be the one to have to walk away to save myself if they refuse to get help too.
   It may well be the Autistic people who are going to save the lives of our families and loved ones and even ourselves. Help is needed and someone has got to step up. Yes, us. Others can try to make us scapegoats for their problems, but we can refuse to take that responsibility, and see that we are not responsible for every emotion other human beings have. We can call them on the fallacy every time someone says, "You MAKE me feel.." We're not gods who'd have that kind of control. We can't make anyone do anything. We can let others have their own feelings. We can never act perfectly enough to force another person to be content. We're just not that powerful.
   This is just bare beginnings of thought, but we are going to need tools and resources to help our NT families. I suggest emergency numbers. They've got them for us, and we need them for them. This is life and death. If we know an NT person has someone that they confide in, we need that number too. We need all contact information of anyone and anything that supports them, and we need to be able to make those calls. This could be family, churches, any group or individual they (not we) find comfort in. Write a short list of information to give including the care giver's name, the address and phone number where you can be reached. Have a script! Even something like, "Jane is in trouble and needs you!" will help.
   NT's often need some kind of therapy, and they often don't get it. As we've progressed, we've watched them deteriorate. It's not our us or our Autism, but they don't know that yet. Here are a few things that may help. I went searching the net for programs specifically for them to help them get to the root of their problem and get through it to some measure of hope and happiness. (WE need them to be happy and whole!) Therapy is great and it costs money. They will have to be desperate, I mean totally desperate to even consider what I'm going to write, but if they are fortunate enough to be at the bottom there may be some hope. If they're not done fighting, I am sorry. We will have to hope they'll learn to let go soon. (They will see "fighting as a good thing" as in fighting for your care, but I am talking about a destructive fighting drive to "help" right up to and through suicide. Of course, that is never "help."
  I'm a long term member of a 12 step group, and there are many different kinds out there. I saw yesterday that these steps have been rewritten for caregivers. It may help, if they are willing.
http://qualityofliferecoverystep1.blogspot.com/2011/03/step-one-in-depth-description-and.html?showComment=1313911530212#c1876700069169191367
   Neither I nor anyone else is going to make money off of this. It is a matter of my very life to pass on what has been so freely given to me.
  Again, hope begins after they let go. Other, longer standing 12 step programs are Emotions Anonymous and Alanon Family Groups. The three I've mentioned would be the most helpful.
     Certainly, if a caregiver drinks or takes too many pills to cope, there is Alcoholics Anonymous and Narcotics Anonymous. All of these help people find a way to be content regardless of their circumstances. All use the same 12 steps, and every last one is free.
  None of these care what religion (if any) people are, how much money they have, what color they are, or if they are male or female. First names only are used, and no one even needs to know that they talked to anyone there or even went to their meetings. It's "anonymous." Frankly, I think these steps should be taught as problem solving strategies in early school, and that anyone could benefit, but they just won't work for a person, until that person has collapsed of all ideas of their own on how they are going to fix, control and manage people, places and things.

    I have to tell you, you can't force them to get help. You may have to watch them go through more pain. There is no greater force on the planet against health and sanity than the determined martyr. Let these resources be there should they reach out for help. You've seen them.
      These are just options. I don't care where people get help be they Autistic or Neurotypical.     It does not matter where a person gets help. If it works, it works! If you know of people or groups that have been supportive, share them with those you care about. Share them with other families who need help, and if you get any help, just keep paying it forward. Your very life may depend on it. Mine does, and it's working out beautifully. My aim is to build bridges of understanding, and help us see through each other's eyes. We all love, we just don't always know how.
  You're saying, "But I can't help my family! I'm the one with Autism who needs help!" I hear you..
   I heard a story a very long time ago, and I don't know the author, but it helped me.
   There were a bunch of people at a very long table. A feast as they'd never seen was laid out and they were starving. You see, they had no elbows. They picked up the food, and try as they might they could not get it to their mouths to feed themselves.
   The same table was laid out in another room, and all of the people there had no elbows either. In this room, however everyone was eating, and they were happy. Each person picked up the food and instead of trying to feed themselves, they fed another.
   Everyone needs help sometimes, and sometimes we get to be the one who gives it.
tina jones

Autism: My story as a parent, My gift

The bully in my childhood was a parent. Jump ahead to when I was a parent. I thought myself dammaged goods. I'd look at my son and think, "How in the world could the universe give a child who needed so much to someone who was so incapable?"
 I had an attitude of martyrdom. I stayed awake for days and nights on end and was out of whatever mind I had. I am on the spectrum myself. I cried then stopped crying for years. I shut down and became whatever my children needed. My son was starting fires before age five. He'd excape the house middle of the night. I make the mistake of falling asleep, and he got the locked, and chained door open enough at the bottom that he got out. A neighbor found him sitting in the highway playing. Images of my baby as roadkill horrified me. I knew another autiistic kid who'd gone to an institution where he was abused. My son was at his father's two days on the weekends when I worked the only time I could doing two 16 shour shifts, and those weekends where when I had the most sleep. Otherwise I had only respit care for 2 hours twice a week, so I could go to the grocery store. My life was protecting him. I took pills to keep me awake, pills to make me sleep when I  had to. I was a nutcase.
   My job downsized, the money ran out in a few months that I'd saved and I fell asleep one night. My son started a fire that took our home, and nearly took our lives. I woke to hear my daughter screaming from where she stood in front of a wall of black and red fire, and I could hear my son, emotionally innappropriatly expressing as always, laughing in fear on the other side of the blackness. I know to get low to the floor, I know to run from fire, but that was my child. I ran blind into the flames, and physically ran into him. I grabbed him, and ran toward my daughter's voice, where I grabbed her arm, carried him and pulled her opening the back door and shoving her out, no steps to the ground. I ran with my 80 pound five year old son and my daughter in tow. When we got past the end of the trailor the ac exploded.
   We should, by all laws of nature have died, all of us. I gave up, and I agreed to send him to the institution to save his life and my daughter's as I no longer cared about mine. It was then his father stepped in, and gave my children a home. I had no insurance, so I stayed with a friend then lived in my car a few weeks until I went to stay with my mother. I missed my children so badly, but at their father's there was family who helped taked care of them. Services were available in their state from Easter Seals, Social Services and MHMR that were not available for Autism in my state at the time. My son was also able to start school early there. In short time I realized that my absolute pride at insisting I take care of my children, and unwavering rule that a mother must do this no matter what, they must live with her, nearly killed the children I wanted so much to take care of, and cruelty of all cruelties those children had been watching me die slowy for a very long time.
   As my son began to grow and flourish in his new environment of support, and as my daughter grew to know more peace, and as the time I spent with them was time when we all were better rested and safe, I began to see that the Universe was right. My son was the perfect child for me, and I wasn't given him because he needed me. It was because I needed him. I had been abused for many autistic traits. One of them was when I'd go off in my own world at over stimulation and stare at nothingness.
    My son and I were sitting outside one day, and I saw him staring at a tree. Long past trying to get him into my world and having developed the compassion, curiosity and wonder of getting into his world, I decided to join him and stare too. It was a nice mental break. I found he was watching a trail of ants. It was so, so ,so peaceful. Nothing to do, just being. My son taught me how to meditate in this way. He taught this frantic, desperate mom that stillness is an absolute need for me and all of us. He taught me that play is not negotiable. We die without it. He taught me that social rules like how to act in public or when to sleep are of no importance. He taught me that happiness is what we're here for!
    I started stopping the pats on the back when people would call me a hero, because pedestals are hard for me. They set up expectations that no human can live up to. The hero was my son. In starting that fire, he saved my life. I got off all of the pills. I stopped trying to be superhuman, and I was forced to let him go to grow. He saved all of our lives.
    Since then, he teaches me that we are adequate and the perfect family for eachother all of us. We're still learning, but I am so grateful for the children I have, adults now. smiles. We have all grown up together through this. Now, when I remember those times when I thought of taking my own life, so someone, anyone would help my children, I am still humbled that help came from the last person I'd have expected it from....the five year old son of mine who loved us all enough to end the illusion that I had to try to do it on my own. He says he owes me his life, but no...That's not it. I owe him mine. 17 years have passed since then. Every heartbeat, joy and tear, everything I know about being a mom, all comes from my children.  I have been gifted beyond measure!
   If you think I had courage, step into my children's shoes. Their courage and strength and insistance on joy and peace in life gave me courage enough to go for an evaluation early this year. My children teach me to take care of their Mom.  They give me the courage to live and live life fully every day of it.
   There is hope for all. It's not hope that our children will one day be like us. I'd have been sadistic to hope my children would have been like me,  the nonsleeping, sorrowful, self absorbed, self pitying, martyr of a woman I was back then, not to mention self medicated. What kind of monster would want that for their children?
    No, there is hope that Autism will be seen as a way of being that while challenging can have it's own beauty and peace, that no parent is perfect, that we are not alone, and that we might see that sometimes the answers we look for everywhere else are right in front of us. Take time to be still, ask for help everywhere and accept it no matter where it comes from.
   What sometimes looks like the source of the problem, just may be the light at the end of the tunnel.
tina jones.

Come Home

 Should you choose to enter my world, then you must first forget. Become simple.

  Forget all that has been learned of life and knowledge and what farce there may be in accepted *wisdom,* Become an innocent and be willing to experience the awe of a child. Be willing to tremble at the strength of an evening sun, be willing to catch snow flakes on your tongue and to dig your toes into the sand. Become a child with me.



"First Kiss"
18x24 Oil on Canvas

   I shake my head at those who sarcastically negate what youth know so easily claiming life taught them differently. "Ah, yes, I knew everything when I was that young too!" They laugh.

   I tell you now, if you want to know how to hope or love, ask a child. They have not yet learned the cynicism, negativity or the defeat of social standards. They have not learned of judgement or who is better than whom. They have not built walls or shunned differences. Indeed, these people know love, and forbid they ever know the arrogance of my age.

   These are my teachers, the innocent with their small words, big smiles and real tears. These are my Masters. I pray to grow enough to become what I always was under the labels, before the standards, behind  my judgements. I pray to know the wisdom of a child.

   So, maturity is to me growing enough to unlearn and growing small enough to hope, to love freely with the wonder of a child. I seek such clarity, and miss it by miles.

   Don't grow up with me. Grow small with me. Come home, and per chance, lead me there too.

"Return to Innocence" Enigma: h://www.youtube.com/watch?v=Rk_sAHh9s08