It is easy to fill our lives with our “shoulda, coulda, woulda’s. I suspect that most of us do this at some time or other in our lifetimes.
I was born in an era when women were still struggling to be women who had a lot of choices in life. When I was starting high school, my mother took me to register for my classes. There was a choice to choose a college route or the regular route. I wanted to go to college and become a nurse, likely a military nurse since I had grown up in a military family that went way back. My mother said no. She said I needed to become a secretary and find a man and get married. Really! It is hard to imagine, but that is what she believed. She had gotten married and I don’t think my mother or father finished high school. She had some problem with her mastoids when she was about my age, and in those days, was in the hospital for awhile and had surgery for it. So she and my father got married when she got well.
My father had come home from school one day when he was I think 16 or 17, and his family had moved away and abandoned him. He had other brothers and a sister who had killed herself. I really don’t know the whole story, but he lied about his age, because it was during the Great Depression, and he joined the military. He got his room and board, but in order to be able to join, he had to give all his money to a poor family who never ever thanked him.
That is most of what I know about my mother and father. So I did all the things I was supposed to and hated every minute of it. Secretaries in those days took shorthand, typed letters and used carbon to make copies and a machine I can’t remember the name of to make copies. They fetched coffee for their bosses every day and for meetings they fetched it for all the men at the meetings. And once in awhile, men treated women disrespectfully, touching them in ways that were inappropriate, and getting away with it because it was the times.
Then suddenly women’s lib came along, and so did wearing pant suits, and women were threatened with being fired if they wore those in the office. Gee, no more legs to look at or exposed body parts to be touched. But women persevered. I divorced an abusive husband, but I suppose in reality he was no more abusive than most men who believed their women should stay at home and have dinner ready for them when they walked in the door, raise their children and do their washing and ironing, and stay in the home except to take the children to the playground. Money was given to the wife to get the groceries, and sometimes the woman might get money to buy a donut or small toy for the children but there was no money for anything that might have taken care of things she might like to have.
I DID get to go to a University finally. And I DID get a degree in Archaeology. And I did work at interesting related work in Mexico and Arizona until I became ill with Valley Fever and Paratyphoid, and then I decided to do other less physically dangerous work. But I had a lot of fun along the way. One day somewhere along the way I grew up and became a bonafide human being who could buy things for herself, and who could dream of things she wanted to do and to become, and she could actually do them. She could say no to men who did anything inappropriate, and she could be her own person in general. I got married again a couple of times over the years and had some really interesting and accomplished men – an archaeologist and an anthropologist. And I learned more of the world and who I was as a human being. No more Shoulda, Coulda, Woulda. I grew into a woman who had exciting careers and who had her own businesses. And step by step, little by little, I became a fully evolved human being.
It has not been easy along the way, but that is what gives us strength in the end result. I am now 77, and I have a man in my life – my significant other, Richard – and he is none of those men I married before. He is a human being – a simple man with simple tastes and a really big heart. He doesn’t talk a lot, but when he does, what he says is real. And he has shown his goodness in so many ways without even saying anything about it. He is not a Shoulda, Coulda, Woulda man. He lives from day to day, happy with the simplest of things. I am free to be who I am and he is free to be who he is. Sometimes the simplest things are the best things in this lifetime.
I will never live in the Shoulda, Coulda, Woulda world again. I decided to get another degree at 74 and graduated in 2016, the same year I had breast cancer. It was Criminal Justice. I was going to be a mentor/advocate for juvenile delinquents (and I have worked with them before in other ways) but other things changed all that, so instead I am a CASA court-appointed volunteer mentor/advocate for foster children. I don’t have an assignment currently, but when I am not a caregiver for my Richard, I can do that if I choose. I am who I am and I am happy with that now. I don’t need to blame anyone else now for what I did not become. Perhaps that was never meant to be. Perhaps, just perhaps I was meant to be on the course of life I am now. It is all good, even on its worst days. I will look back on them tomorrow and be glad that I have seen many sides of life. I will be glad for the little things – a beautiful sky, a gentle breeze, a hand that reaches out and holds mine . . .
It really isn’t a difficult recipe. In fact, it is probably easier than a recipe for making bread.
Ingredients: Respect, Dignity, Peace of Mind, Liberty for ALL, and throw in Cooperation, Understanding, Open-mindedness, Oneness, and perhaps Sharing. Can you think of any others? Why should these things be so difficult? How could we make them easier for everyone everywhere?
I would love to hear your ideas on how we could bring peace throughout the world while retaining who we all are. Is it possible or a dream that can never happen?
In the early 70’s, my brother returned from Vietnam. He is five years younger than me, and he was a young kid when he left to be in the Air Force as a Demolition Expert. He spent most of his service time out near the end of the runways, where the planes would come in, sometimes with bombs they did not drop, and one of his jobs was to neutralize and unload them until they were needed again.
When we had the first family reunion after he returned, I could hardly recognize him. He is now considered 100% disabled, though when he returned he was considered 40%. He had a TBI and had multiple surgeries to try to put in a plate, but none of them worked and they made him pass out repeatedly. He also had a spinal surgery that was blotched and so he could not walk well at all, and spent a lot of time sleeping because of pain. And then he had PTSD like so many others, his from having to shoot tiny children who came onto the runway, wired with bombs. It is difficult to imagine how people become so brainwashed or terrorized that they could ever harm their own children and babies.
Seeing him again like that when he had still been a big kid in his mind and spirit when he left, full of mischief and the joy of being young was almost too much. It gave me a heart to work with physically, developmentally and emotionally challenged children and adults, something I have done for the rest of my life.
I first began to work with special needs children in the Torrance and Redondo Beach school districts in California as a substitute, and I worked every single day and absolutely loved it. Many if not most of my children were preschoolers, kinders and middle school aged then, and had multiple challenges. I did this work throughout Southern California for more than 15 years, always as a substitute Paraeducator, Aide, or Teacher (uncertified). I think over the many years, I learned more from my children than they did from me, though I was always an innovator with the ways I did things.
I do not believe that special needs children who are likely to end up living at home or in a group home or other special facility need to be tormented by having them do repetitive work unless they really show an inclination to like that, and yes, some of them are very good and very happy and excellent workers doing repetitive work. My belief is that every child should be given an opportunity to do something that makes them happy, even if it is making beaded necklaces or weaving or whatever else they enjoy.
The book above is the cover of a book by Barbara Williamson and me. Her name, though not on the front of the book, is on the back with the other authors. Besides telling her own story, she made major contributions in the way of decision making and adding creative input through the journey of the creation of the book. Just ahead of the time I was working as a substitute, I decided to start a nonprofit to assist physically challenged fiber artists (art quilters, though many of them work in many mediums besides quilts). Because I too was involved with art quilting, I realized how difficult and expensive it was for them to enter juried shows, often to not get accepted after paying an entry fee that most could little afford. So I wanted to find venues that gave them a lot of excellent exposure and at the same time wanted to teach them professional development. Barbara Williamson and I became excellent friends and she became the Secretary of the nonprofit. We ran it successfully with just her caregiver, Rob as our treasurer, and no money in the kitty, which made running the nonprofit very simple.
The first exhibit we ran was called My World in Black and White, and we had s121 participants from various countries and the United States. The exhibit had some 10 live venues in one year (what we call traveling venues) and the exhibit museums, galleries and quilt shows were only too glad to help us send all the quilts as a group show for free. I only had to get the quilts to the first venue, and from then on, everything went from one venue to the next seamlessly. At the end of the last venue, the quilts were returned to me and I was able to ship them all back home to the ladies. If the venue was local, I was there to help hang the quilts and take care of other chores and greet the visitors as needed.
We ran the nonprofit for some ten more years, with back to back exhibits the entire time, and we did a lot of things besides that, helping after provide school projects and materials for the children of migrant workers, providing donated used sewing machines for other ladies who could not afford to get one on their own, donating quilting materials to the American Indian ladies on Pine Ridge and other things. During this time, Barbara grew her own art and developed her fiber arts as a profession. She is successful in everything she does now even though she is confined to a wheelchair.
We have changed our focus now as we are both older. Barbara lived in Paradise, CA, where the entire town burned down November 2018, causing her to lose basically everything. She has started life all over again and is busy settling into another home in a different city and working on her continuing career. As for me, I am studying a fantastic correspondence and event class called The Silent Eye Mystery School led by Steve Tanham, Sue Vincent and Stuart France. I still tutor special needs children and adults as well as ESL adults, and I will likely be a volunteer in some capacity the remainder of my life. I am currently a volunteer court-appointed volunteer advocate for CASA (a nonprofit located through the U.S.) for foster children. So life is never dull and when not doing these things I am working on more books and caregiving for my significant other, Richard, taking care of my garden and our six chihuahuas, a cat, two huge goldfish and two alien catfish. I am 77 now and intend to stay busy for whatever time is left. Although I have very little in the way of material goods, I have been immensely rich in life experiences and lifelong friends, and for that I am eternally grateful.
My heart work is with special needs children which I did for some 15+ years. Sometime in the early 70’s or late 60’s my younger brother and only sibling came home from Vietnam 100% disabled with a TBI, a spinal injury, and permanent PTSD. It gave me that heart to work not only with the children, but with people with all forms of challenges – physical, developmental, and emotional. I have done that for the rest of my life to this day.
I was a Regulatory Compliance Specialist at 64, working for a major pharmaceutical manufacturer of plasma derivative products. I had done quality assurance for some years in my own business. I was a certified quality manager/certified quality auditor, so I knew what to look for wherever I went and whatever type of business it was. This would be to my detriment when the company decided to to sell to a company in Spain to get out from under a FDA action against the company for fairly major quality issues. When the company in Spain decided to purchase the company I was working with, I got laid off along with 400 others.
At 64, on unemployment and with no prospects of a job because of that title, I founded a very tiny and penniless nonprofit to assist physically challenged fiber artists with getting exposure and sales for their work and to assist them with professional development. I did this successfully on the side, always as a volunteer with the other volunteers for some 10 years. Shortly after I founded the nonprofit, I remembered that I had a certificate that would allow me to work with special needs children. I became a substitute for two different school districts, and I absolutely loved all the work I did in school. Life was good in those times. I had just enough to live on very modestly; spirit does not need a lot of money.
These were truly some of the happiest days in my life. When I was not at work with the children, I was providing assistance for the physically challenged artists with two other people – my paraplegic best friend, Barbara Williamson, who lived in Paradise, CA, the secretary of the nonprofit, and her caregiver, Rob, the treasurer, whose job was easiest of all since we had no money in the treasury. I had figured out how we could do a lot with nothing and so we did that for more than 10 years until we both suffered worse physical and mental challenges that made it difficult to continue that work.
We did write a book on the subject to get good closure. Last November, Barb and her caregiver had to escape with their lives from the horrible fire in Paradise that destroyed their home, the entire town and all of her art. I will never regret any of that work because she now has skills and knowledge to help her rebuild her life from what she learned during those years.
Most of all for me, there were the children. Some of the children I worked with were not only developmentally challenged; they had such major challenges as MS and childhood arthritis. There is something so special and beautiful about these children. If I had been married then and had an adequate home and finances to do it, I would have adopted as many of them as I could. Raising special needs children is no easy task nor a romantic one. Not only do they provide challenges throughout the days and nights; most of the time they will be in the care of the parents one way or the other for the remainder of their lives.
Special needs children often require bathroom assistance into and through their teen and even adult lives, as well as things like “failure-to-thrive” children, who must be helped to eat enough to help keep them alive. This is not a psychological issue; it is one that they are born with. I have had children I had to give enriched milk or other liquids to through a tube in their stomachs, and others who had to have a bucket accompany them to their lunch so they could throw up in it after eating a little. And then there is the physically reactive child. Some of them are runners, and will run off the playground if they can (and not even because they are unhappy, etc. but just because it is part of their makeup, and they are not running to a specific place, but just needing to run). And there are those who can deliver a huge punch; I was punched in the face and had my glasses broken, was bitten, had my hair pulled, was kicked and painfully pinched and slapped, pretty much all without warning. Some of the children are very strong for their sizes. If a child’s routine is broken in any way, or the child is unable to express his/her needs, you can expect that the child will react, sometimes violently.
But we become good at dealing with these issues, and most of us who work with them can see the beauty of the children and the wonder of their lives through all of the challenges. Sometimes their own parents cannot cope with them, or the parents do things that are not beneficial for the child such as over/under or irregularly medicating them or putting them into group homes when they become overwhelmed. It is one of those great societal issues where it is difficult to place blame, for anyone who has to deal with these issues day AND night every single day of the week without a break is going to have a true challenge.
As caregivers for special needs children, we are all referred to as mandated reporters, and it is our duty and legal obligation to report any type of abuse of any child. I honestly can’t tell you how many of those reports I filled out over the years for things I personally witnessed. And I can’t tell you how many of them were “shelved.” The schools in California at least are financed by children being in school, not when they are out sick or parents refuse to bring them to a specific school because of the behaviors of teachers or aides or others. I am pretty certain that most people reading this will understand the implications of this policy.
There are a lot of really wonderful and dedicated teachers, aides and others who work with special needs children. But there are also a lot of horrible ones, and I am not certain that situation will ever change in reality. There IS training available for how to work with such children and young people, but not all of those who work with them get that training or learn from it if they do get it. Most of what we learn to deal with well is learned from real-time experience along the way, and if a person’s heart is not in it, it will at best be mediocre.
At home, as I noted, parents are often stressed to the breaking point and there is no one generally to spell them or for them to talk to regularly – even support groups are very far and few between. The first sad thing too is that some children are labeled special needs because perhaps they are slow to learn to read or write, etc. Once they get such labels, they will have them through their entire lives. For me, that ensures that even the children who might otherwise have done well will just give up and not try to much.
I have long since realized that children grow at different rates, just as some walk really early, learn to use the potty really early, etc., and some take a long time. It is just the nature of life in this world. My daughter was potty trained when she barely started to sit up, and that was her own doing. She would put her tiny hands together and clap any time she was successful in her efforts. She could read well and talk well at age two, and she could memorize her storybooks too. My two sons were very different from that – slow to learn to do everything and slow to read. It is normal for children to progress at different rates.
One of the things that happens from the stress and other issues parents face is that special needs children are more often abandoned, abused, and even murdered than regular children. They are also very highly bullied. The problem however, is that the tallies on these crimes are all thrown in together with those of children who are not special needs, so as a result, no one knows the true figures. But some people who have studied and worked with the children have long thought that the figures are higher and it makes total sense. And if a special needs child ends up being institutionalized because of abuse or abandonment, there is little chance that the child will ever do better in this life. And the people (if parents) who do these things to special needs children, at least in the past, often did not get severe jail sentences if any at all. There used to be a young man who likely had Asperger’s, a high functioning level of autism, who wrote posts regularly about these issues. These young people can be and often are highly intelligent, but are unable to deal with socializing and interacting with others.
Even the best of parents with special needs childrens do not know all they need to do about what happens when their children grow up. Not all parents with older special needs children know about estate planning for the children. There are three very specific and important reasons that this needs to be addressed.
First is the fact that these children will need special physical and mental/emotional services all their lives, even the most proficient of them. This will involve very careful financial planning to ensure that the parent can provide such services.
Secondly, a special estate plan is the only way to ensure that the child can be provided for without having them become ineligible for government and private benefit programs.
And finally, if the parent is no longer alive or available, without such planning, the child can end up in an institution, or worse, can become homeless and at the mercy of every transient out there. I have actually witnessed such cases, and I am pretty certain that no parent would wish this on any child of theirs.
The best way for parents to plan for a special needs child is to set up a Special Needs Trust. In this instance, the parents appoint Trustees to manage the Trust for the child’s benefit. This person needs to be trustworthy, and someone who is capable mentally and emotionally, as well as financially to direct and manage the child’s care through the remainder of his/her life.
I am retired from working with the special needs children now since I was diagnosed with severe PTSD from heavy-duty traumas followed by cancer (cancer-free following surgery in 2016), but I still tutor privately, often as a volunteer these days with special needs or ESL (not always Spanish either) children and adults. I completed a degree later in 2016 in Criminal Justice with a minor in law, but could not work as a mentor/advocate for juvenile delinquents because of my age and the PTSD. I always keep trying to do what I can and I have been happy for whatever I have been able to contribute to the lives of special needs children as well as others with special challenges. It is not going to change what they go through overall, but it does help them for a moment in time and I am not sure what more any of us can do.
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” Leo Buscaglia – Author (1924 – 1998)
We are all here on this earth because we are loved. We have all received the greatest gift a person can get in this life, and that is life itself. Treat yourself with the respect and dignity you deserve – Never send yourself to the bargain basement. You are sacred because everything on this earth is dependent on everyone and everything else. You are important to the survival of this planet.
One of my favorite old-time actresses, Jo Coudert, since passed on, wrote in a book, Advice from a Failure, “Of all the people you will know in a lifetime, you are the only one you will never leave nor lose. To the question of your life, you are the only answer. To the problems of your life, you are the only solution.”
Although I am normally of a cheerful spirit and am always trying to provide inspiration for others, today is a truly difficult day.
I have been working with physically/developmentally/emotionally challenged children and adults perhaps since the 1970’s when my younger brother came home from Vietnam, 100% disabled with a TBI, a spinal injury, and permanent PTSD. It gave me the heart for this work and I have done it ever since.
It has been a good journey, and I am glad that sometimes in the face of tragedy, we are led to do things to help our communities and to help others who are going through challenges.
Yesterday morning very early, I got a call from one of my best friends who helped me to create and run our tiny, but successful nonprofit for some 15 years, providing exposure and professional development for physically challenged artists. Barbara Williamson is a paraplegic lady I met more than 15 years ago when she was looking for help to become a professional with her own business selling her fiber arts work. It was natural that we came together to do the work we did with virtually no money for all these years.
Barbara Williamson, “Buddha’s Garden,”
one of three pieces left because they are in an exhibit in another town
Barbara was shot point blank by a felon when she was in her mid 20’s; the bullet missing her heart by one inch, and leaving her permanently physically challenged. She was approximately four months pregnant at the time, and miraculously, the baby was born early, but survived, so today she is a mother and grandmother. All these years, Barbara has been a productive fiber artist, a writer, and she has contributed so many things for her community and for others in need.
The phone call was short; she, her caregiver, and her dog had to evacuate their town. There was a huge fire coming up the mountain in the valley below her home. As we tried to hear the news throughout the day yesterday and today, we heard that the hospital has been destroyed (all patients evacuated) two blocks from her home and the fire is blazing through the entire town. My friend is presumably safe for they got out early, but all of her artwork and her sewing machine and everything else had to be left behind. This is some 15+ years of art quilts that have been in many exhibits including international ones, and which we were preparing to sell on a website we were creating for her.
But they were more than just that. They were the reason she has survived cancer, a burst artery, a stroke, and any number of other physical challenges through these many years. There are tears in my eyes, but there is joy in my heart, for what is taken from us today will live on in our memories over the many years. Perhaps I have impacted her life in a positive way, but she has brought so much more to mine.
I remember that my mom had more “mom-isms” than probably most of the moms on my block. If you don’t know what a mom-ism is, your mom probably never had one, but you might ask her what mom-isms her mom or grandma used to use. A mom-ism is when you make a remark, such as “Oh Mom, I can’t.” And your mom replies, “Really? Did you know that there is no such word as ‘can’t’ in the English dictionary?” Or perhaps she might say, “Where there’s a will, there’s a way.” Think back on some your mom or grandma might have said. I know some of you have some in the back of your memory. They were intended to have us not give up easily, or perhaps guide us in some other area of life. The quilt that is painted and stitched below is one of my mom’s mom-isms. I would say something like “I just am not sure if I can do it,” or perhaps “Mom, I am afraid to do it,” and she would reply, “Oh, take the bull by the horns.” I have no clue where these mom-isms came from, but they were definitely an important memory in my youth. I will look forward to seeing some of yours. Perhaps you have pop-isms, or grandma or grandpa-isms. And you know, these worked too. Look how worried this huge bull looks compared to the little cowgirl. Have fun remembering!
I know you cannot see the whole quilt, and I would like you to be able to do that. This was made some years ago as an exchange quilt. We each send a package of fabrics we want to have in our quilt, and the other person does the same. A middle person handles all the fabrics, sending them to different people, and the quilt we make for this unknown person will be returned to them when we are done and all the pieces have been collected by that middle person.
We all have a dual nature, and we generally take on one or the other each day. Just as we have day and night, cold and warm, floods and droughts, love and hate, success and failure, so we can choose to be one personality or the other.
I always love this quote from the book, Advice from a Failure, by Jo Coudert. “Of all the people you will know in a lifetime, you are the only one you will never leave nor lose. To the question of your life, you are the only answer. To the problems of your life, you are the only solution.”
I would love it if each of you who follows this blog posts something about something you absolutely LOVE to do, be it making a good pot of spaghetti, painting something that means something to you, or whatever brings Edison in all his brightness he created for us into your heart. I am going to share some of mine here. I am NOT a professional artist in the sense of having a degree of art, and have had very little professional training of any kind. But what I DO know is what I like, and what speaks to my heart. I love fiber art, or art quilts and others too, but I do the art quilts. I love anything unique, and I love things made from nature or from recycled things. And I love urban art and also what I call interactive art. This is art that causes the viewer to need to interact with the art in some manner to perhaps try to figure it out or its message to viewers. And I love to put it everywhere – not just in the house or an exhibit or publication, but anywhere my mind decides would be fun to have some art. So if you are expecting some really polished stuff, you probably should go to a different place. This is stuff that comes from the center of who I am.
The life of a child is magical. It is almost unbelievable that something that starts with an egg and a sperm can grow into something so complex and full of so much potential. They are sacred.
I have worked with children for more than 15 years as a substitute paraeducator, instructional aide, and teacher in various California districts. These days have been some of the best days of my life. Every time I get a new child or a classroom full of children I feel as though life is giving me the best gifts a person can receive. My children have been all ages of special needs – physically, developmentally or emotionally challenged, or a combination of any of those things. But I use the word “challenged” instead of disabled because disabled suggest that a person is unable to do things, which is far from true, even in the most severe cases. With consistent assistance, the children CAN learn at some level.
In one of my classrooms as a paraeducator, I served as a one-on-one for a little boy who was autistic and nonverbal, and he had braces on his ankles and feet. He also had to have special liquid frequently to help with his digestion. Although he had these challenges, he was generally cheerful and seemed to have a good sense of his own abilities. The only area that was a challenge was when the children went outside for their exercise.
The braces made it difficult for him to walk very fast at all, and running seemed out of the question when the aides would play a sort of baseball with a big rubber ball and “bases” leading to the home plate. They would throw the ball and the children would run from base to base, trying to get a home run. The little boy I had charge of seemed to see this as a time to “watch” as the other children ran. When his turn came up, he would stand watching, but not try to move forward. This day I took his hand, held it tight, and encouraged him to keep going. We managed to get through all the bases, and at last made a home run. We had two more turns, and each time I held his hand tightly, encouraging him all the way.
Soon we were sitting in the grass resting as the game was over. I turned to him and told him “Wow! We made three home runs!” Suddenly he grabbed me around the neck with both arms and began to hug me until we both fell over. I knew it meant he was so happy because he sensed his victory.
I will never forget that day. As he got into the car and his dad began to drive him home, he reached out with both arms and threw kisses at me. I will always have a smile in my heart when I think of that child.