Doing for Others

Published by Amazon KDP in Paper and E-book.

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.

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Beautiful Childlife

Superboy courtesy Pixabay.com

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.

Special Needs little girl courtesy of Pixabay.com

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.

Courtesy Pixabay.com

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.

Artful Alchemy: Physically Challenged Fiber Artists Creating

My friend, Barbara Williamson and I worked hard to get this book published.  It is the culmination of our 10+ years together running a very small, but very successful nonprofit organization called Fiberarts Connection of Southern California.  We assisted physically challenged fiber artists with getting exposure for their work, and also helped those who needed it with professional development.  A lot of folks don’t realize that when you have a severe physical challenge, you might not be able to get out and about.  Even if you have transportation, many facilities and open public areas are not equipped for wheelchairs, and just getting transportation from public sources can be a huge undertaking.  Sometimes when you get where you are going, you don’t get the service you really need either.  So we tried very hard to cut through some of that as well as creating good exhibits for the artists and for practically free.

Barbara has been a wonderful and inspirational fiber artist, producing some award-winning quilts, being the featured artist in an international exhibit, and having articles written about her. She has long had her own fiber arts business selling her work, and her blog is http://www.threadscapestudio.blogspot.com.  And she served as volunteer Secretary for our tiny nonprofit while her caregiver served as our Treasurer.  We never has any money but despite that we still managed to get everything we needed done.  Enjoy!

The book is available from AmazonKDP.com.  Thank you very kindly.  We hope that you will read the story of these 23 amazing fiber artists and see their beautiful work. A lot of them are internationally renown for their unique work.