All of my quilts come from a spiritual place or from something that tickles my funny bone. They come from things I think about and work out in a symbolic way for my own self.
I was thinking about trees in a spiritual way, and I suddenly experienced an epiphany. I realized that not everything needs to be seen to be understood, or to have faith that it exists somewhere. I cannot see any of the great Gods of the world, except as man himself has presented them, and I have no way in reality if any of those things are actually those Gods or not. I guess that would be a belief that Gods are those representations of Gods that existed in their times and places in the universe. But the reality is that if I am accepting any of them appearing as man presents them, then I am believing and trusting man and not the Gods themselves. But if I feel in my heart and soul that there are Gods, have always been Gods, and that I, and everything that exists in this world is sacred, and that we too are aspects of God, then that is faith.
And so this tree in the piece has places where you cannot see the branches, but it has places where you can see the branches. Is this tree then a belief, or is it perhaps faith?
I wish that all children had an opportunity to learn some form of music. It is so good for the soul and I honestly believe it helps them to be able to learn other things as well more easily. If every child in every culture, every nation, had music from such an early age, do you think we might have a more peaceful world?
I have a number of heroes in this life, and I think heroes are good for all of us. We all need others who inspire us and give us something to keep us going when the going gets tough. One of Zig Ziglar’s quotes I always remember is “Get a checkup from the neck up and avoid stinkin’ thinkin’ and hardening of the attitudes.”
In these times, we all can benefit from our heroes. The daily news is often dismal, the sign of a dysfunctional society for sure. It is easy to get down when we read nothing but the worst of the worst in human behaviors throughout the world.
Zig Ziglar was not born a privileged man. His father died when he was young, and a younger sister died a couple of days later. His mother kept the family together, and he worked hard all his live after that, serving in the military and then working in sales. But he took what he had in life and made it work for him and his family, and he is today remembered as one of the greats in inspiration. His first book went through some 30 publishers who thought it was a waste, and then a publisher picked it up and it sold half a million copies right away.
No matter where we have come from or what we have been through, we CAN make our lives better. But it doesn’t happen if we sit there and wait for someone else to do it for us. And remember that no matter how difficult our lives may be or how challenged, there is always someone who would feel wealthy if they had what we do.
I have many heroes in all sizes, shapes and colors that I follow. I will ultimately reveal all of them over time, and some I have already mentioned. Who are your heroes in this life and why?
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.
In this world of ordinary people, extra-ordinary people, I am glad there is you. I wish each and every one of you extra-ordinary people the very best life has to offer for the New Year and all the Years to follow. Some of you may think yourselves ordinary, but in my life, you are miracles, and you are sacred. Thank you for the many gifts you have brought into my life.
As we continue a season of holidays, I want to wish you the very best life has to offer, no matter what set of holidays you choose to celebrate. I wish you peace, joy, and an appreciation of the sacred in this world.
This is a time of renewal, and a time of quiet contemplation about the world that we have been given in which to have the experience of being an important part of the universe with its many different dimensions. As the world seems to sleep, new life is forming quietly in so many different places and going unnoticed until it bursts forth in all its glory when spring awakens.
You were there for me, and you didn’t even know my name. You fought for me, and millions like me whom you never got to meet. And you fought for your wives, your children, and your grandchildren, and this country of ours. You came back, alive but wounded, or you came back in a casket. You did your best to preserve our country and our freedom. You were terrified at times, and sick from seeing all the dead and dying and the wounded, but you kept fighting. Thank you forever. Thank you for all the children growing up in a free country, and for all those who don’t even realize how great was your sacrifice. I don’t know your names either, but I know that you did the best anyone could have done for any of us. And I thank you one and all. I wish you could hear me say it. I wish I could shake all of your hands, or perhaps make a quilt for you and your families, who still cry when they remember what you were willing to give.
I cry when I remember my little brother, barely a man at 18, and how he came back 100% disabled from a war we should not have perhaps fought. His sacrifices, like yours, gave me the heart to forever on work with those with physical and other challenges. It gave me the heart that when I see you missing a limb or more than one, or suffering from PTSD to want to hug and comfort you and to say that I will never forget one of you. I grew up in a military family and every male member fought in one of the wars through time; some never made it back home.
This day is coming to an end, but your day will be forever remembered in the hearts of many of us. And again, I want to say to all of you, thank you forever.