How many of you remember this absolutely delightful and magical story from the early 70’s? I loved it since the beginning and have listened to it over and over and over again. What might it be that makes it so appealing? Well, that would be aside from so many delightful aspects of the story of a little boy, Oblio, born with a round head when everyone else in his village had pointed heads. Can you imagine such a dreadful thing?
Although his mom and dad loved him very much, they felt sorry for him, so his mom made him a cap with a point in it so that he too could have a point and be accepted by the other villagers. He did have a wonderful little dog though, and his dog’s name was Arrow. Now, like most dogs (and other creatures), Arrow was His Owner’s best friend, and they played all the time happily together. Arrow did not care if Oblio had a point or not.
As you can imagine, eventually trouble follows the one little guy who is different from all the other folks, because he has no point. And so of course, an evil Count comes to dislike Oblio because Oblio won a game of Triangles that was only meant for those with points, and the Count’s son just happened to be one of those. Don’t you just feel the chill of what is about to happen?
That’s right – Oblio and Arrow are banished by the Evil Count because, well just because, to the Pointless Forest, the dreaded place where no Point person had ever gone. But sturdy little boy that Oblio is, he and Arrow set off on a journey with a good amount of bravery, or perhaps some kind of adventure to the Pointless Forest. Along the way he meets many characters in the Pointless forest, and one of them is Rockman, who gives him a good life lesson.
Well, there you have it. Oblio and Arrow have a long and exciting adventure with lots of amazing creatures and things in the Pointless Forest, none who have points. He returns to his village and is happily greeted by all the people with points, or so it seems. And he tells all the people with points how everything in the Pointless Forest DID have a point. They all cheer because somehow they all knew that even though they could not see it, that it did exist. Oblio had a point all along! Well, I have to save the rest of this wonderful story for you if you don’t already know it, and so I will leave you with this thought. Even if you have no verifiable proof that something exists does not mean that it doesn’t. Arrow always just knew this.
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.
I was born November 22, 1941, very shortly before the bombing of Pearl Harbor and our full involvement in the war. My father was an Army non-commissioned officer for most of his days in service. He went off to the war shortly after I was born; I am not really sure how long he was gone or what countries he was in.
When I was perhaps two or three, my mother and father and I drove to Rhode Island from Ft. Jay, New York, where we had been living and where I was born. We drove to get my maternal grandmother, for my grandfather had passed away, and she could not afford to live on her own. In those days, a widow whose husband died in the army, a sargent I believe, got some $50 a month.
My father’s background was very strange. He came home from school one day when he was 16, at the heart of the depression. He had other brothers and a sister, but his family had abandoned him. So I think he might have struck out to live as best he could, and as soon as he was able, he joined the army. In order to be accepted, he had to give his salary to a poor family. He would receive room and board, but they would get his salary. He told me once that they never once sent him a card or thanked him.
Dad apparently found out where his birth family was living, but they never accepted him back, and to this day, I live with the mystery of what caused that. I do know that his only sister who was younger than he was committed suicide, shooting herself in the head. Even after my dad and mom got married, his family still never accepted us and so we never knew them at all and no one spoke about the issue.
Neither my mother or father ever finished high school, so schooling was very difficult through all elementary and high school learning. We lived in the same town in El Paso, TX until I grew up except for a couple of years when we were sent to Okinawa. But we returned to El Paso afterward and we always lived on the outskirts of town and only my mother had friends, and that was later in life. I was not allowed to have friends except the little girl my same age next door. And she never came into my home; any playing we did was outside or at her home.
I cannot remember when it began, but my father began to molest me. I might have been as young as three or five. For a young child to have to suddenly think of the people who are considered the world and all the child knows and learns from to suddenly be faced with people they somehow know but who have turned into monsters is almost unimaginable. Everything that is known must be unlearned because nothing seems to make sense anymore. The mother is not there for the child, but accuses the child of being the cause of the issues when she is confronted with the truth. The world was suddenly shaken on its very foundation, and the child caught amongst people who were no longer there to attend to her most basic needs.
Every little child has a sacred little place in his or her mind where he or she goes into and no one else enters it. It is the place of childlife magic. It was as though someone went in that little sacred place and broke all the dishes. Even if the dishes were to be repaired, they could never be capable of magic again.
This was how I lived my early life. I felt ashamed and yet there was no one I could trust to tell, and in my mind, I was probably the only one in the whole world with such a burden on my soul, one that I struggle to understand to this day. But somehow other children saw something in me that conveyed my shame at being a victim, and they bullied me all the way through school. I hid on the playground in the bushes at recess, and would only go home when all the other children had left. But as hard as I tried to avoid them, I often failed. One day another young girl held a knife at my chest; to this day none of it seems real. Another day some boys grabbed me after school and threatened to cut off my fingers with some kind of equipment that looked like a guillotine and was used to cut cigars. They ultimately let me go, but the layers of needing to hide and not being accepted were building up thickly.
I often wonder which nightmare was worse. I ran away several times, but always got caught, for I had no place to go. And I could not give a reason to the police who found me riding my bicycle after dark down the streets not so far away. I was punished of course, often staying in my room for a month or two at a time when I came home from school, even eating my dinner alone, and no one speaking to me, though my grandmother shared my room. I think she would have, but she was a vulnerable hostage as it were too. She did manage to whisper good night, but that was it.
We went overseas to Okinawa with my grandmother for a couple of years when I was in 2nd and 3rd grades. By then, my younger brother had been born sometime before we went to Okinawa. He was five years younger than me. I remember his innocence and how I felt a need to protect him even though I had no one to protect me.
The whole world seemed to be insane. The wives and children of the men there seemed really crazy. One day a woman who lived nearby in another quonset set her home on fire and ran down the street naked screaming. The children were even worse, and bullying was an everyday occurance, and this time instead of one or two children it was a gang regularly. I was shot with a B B gun, luckily with no long-term damage from where the B B hit, and I wad “crowned” with a skull as I was tricked into going into a cave in the hills. And once again, I was threatened with having my fingers cut off with a film cutter that looked a lot like the previous cutter that I had experienced.
We lived through typhoons that threatened to topple our quonset, and weekly practices of having to run into foxhills on the beach and take shelter until we were released verbally. My father shot and killed a boa constrictor that somehow had found its way into our quonset. The beaches were littered with the remains of landing crafts covered with rust, and the hills and mountains contained many jars filled with bones and belongings of native peoples who had died in the war. The native peoples were extremely impoverished, and the military people were ordered to take in at least one person to help with household chores and make sure they were fed and cared for. When we got sent home again, they ran all the way to the ship we had to board, holding onto my parents’ legs and sobbing to have them come with us.
This is a long and painful journey to recount to you, so if you have difficulty reading this, you may want to stop reading now. I will be posting the next episode within likely a few days, There IS a good message to come from this living nightmare and pain, but as in all horror movies, you have to watch the bad parts first. This is written to all those who have suffered in some way in their lifetimes from painful memories whose doors they have not been able to close. Most of us have chosen over the many years to hide issues of identity and abuse away because it is too difficult to deal with and we are living in fear that society will judge us negatively and perhaps hurt us physically. In the end result, we hurt ourselves more than anyone else possibly can.
“We don’t stop playing because we grow old; we grow old because we stop playing.” George Bernard Shaw – Dramatist (1856 – 1950)
I was thinking about how much fun I have had when I allow myself to play freely as this child is doing. The freedom to explore the world we don’t see everyday, sometimes when it is right in front of us, is a wonderful thing.
I remember when I was turning 65, how I decided to put on some African music I had and begin to dance to it naked in my own home. And then I got the idea to paint my breasts and make prints from them onto cloth. I had no idea what these simple parts of my own body look like from a different perspective and it just seemed a fun way to play. There is nothing strange or silly (well, silly I can live with) about it. It was playing, and discovering, and it was immensely a fun way to celebrate. In the end, the two prints I made – one white and one multi-color, ended up becoming quilts that looked nothing at all like breasts.
I once saw the installations of art by a famous artist who did basically the same thing with parts of his body he said he never saw before. It was amazing, for he had manipulated the images that he got, and nothing was even recognizable as whatever it was originally, but it was immense fun to think about someone to be unafraid to play and to discover whatever there was to find.
It isn’t just the human body with which people are afraid to play and discover. It is things we all take for granted. The cracks in sidewalks, the marks on trees, the forms of all sorts of things out in nature, and perhaps a million other things that we really don’t know at all except from a distance. It isn’t just about playing with toys or playing games that we played as children. It’s about getting to know the world we live in, up close and personal. Have you played lately?
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!