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.

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Don’t Let Them Take Your Mind

Courtesy Facebook Free Photos
This is a great video, and says so much about our sacred being. The music is fantastic.

This is one of my favorite pieces of music. It says so much about our integrity and sacredness as human beings. I hope you enjoy it as much as i do. It is definitely on my regular listening

In this World of Ordinary People

A couple of ordinary people, Anne and Richard

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.

A Time of Quiet Contemplation and Thankfulness

person holding ball glass
Photo by Artem Saranin on Pexels.com

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.

 

 

Want to Play?

pexels-photo-1149022.jpeg
Photo by Sharon McCutcheon on Pexels.com

“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?

 

Accidental Art

 

Just what IS accidental art?  Doesn’t everyone who paints or does mixed media or art quilts or other art forms have to plan everything out ahead? How can it be art if it is not “designed?”

Have you ever watched a child creating art?  Children don’t plan their art.  They just start making lines and marks and coloring all over the page and generally using their full imagination.  There is a freedom and spontaneity that you cannot help but enjoy, even if you are a professional artist or person who doesn’t care for art.  It reminds you of some part of yourself that many people lose as we grow older and have to deal with the everyday issues of life.

This is my favorite form of art.  All of these pieces were created in a matter of minutes, often pulling scraps from my friend Jamie Fingal’s fabric scrap can or my own, and using a glue stick or pins initially to put down whatever pieces I found.  Honestly, none of these are planned.  They just came to be born as I allowed myself to go into my childlife, just playing and having fun.  They are all in various stages as I was making them. The flowers with the frog were from my boob prints, and so much fun to play with.  I don’t think any of these took me longer than 15 – 20 minutes to create in whatever forms they are here. There is no attempt to “match” anything, to be precise, and even the stitching that comes later on to finish them is just wherever my hand feels like guiding the machine.  I don’t need to put colors in the “right places,” or worry about whether it looks like it is “supposed to look.” The striped “cat” below was just a scrap of fabric I found in exactly the shape it was.  We used to give little blocks like this to friends who perhaps hurt themselves in a fall, or maybe had surgery.  They just become something as we go along, but there is no thought given to trying to create any particular thing.

Tiger Kittykit kat and the catepillar 1 (2016_09_03 07_58_44 UTC)Annies boob quilt for autism charity - My garden of Earthly Delights

 

19995 (2016_10_30 18_27_53 UTC)

Annie's 15-minute bird 2 better (2016_09_03 07_58_44 UTC)