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 seems an odd thing to think about when we are still alive and perhaps still young. Writing your obituary is a good idea though because if it is left to others to manage, they may write things that you would not have wanted to have written about you, or perhaps they would leave out things that were important to you.
It is a good way to remind yourself of all the things you have accomplished in your lifetime, and to remember people who others might not remember who were important to you in life. We don’t have to be thinking about dying, but we don’t really know what life has in store for us.
I often think of the story of Anne Frank, and how her story of her life in those last days was captured and has been an inspiration for so many people because it is the story of someone who lived a life with such meaning in just little everyday things. That is something I think it would be very difficult for another person, no matter how close they were to you, to capture your life the way you would have thought of it.
I think of my father, and I have not a photo or anything left of his life. He was not a role model for a father in some ways, but he did take care of us to ensure we had a roof over our heads, food on the table, and clothing always. He once got me a Ford Taunus, and I drove it out to White Sands Proving Grounds with him, and it went on the fritz out there. I could only drive the whole way back in 1st gear, not being able to shift at all. It seemed that drive was forever, and I never wanted to drive that car again. Tomorrow is Father’s Day, and I wonder how I might have written his obituary while he was still alive. I think the same for all of my relatives who are gone now, and those I particularly loved, and I so wish now I had captured their lives for my own children and their children and grandchildren.
Perhaps this is a good way to spend a bit of Father’s Day. If you can’t capture the life of your own father, perhaps you can capture your own growth from being a child to growing up and then becoming a father. I know someone will be glad someday to read about who you were as a human being and the things and people that were important to you in this life.
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.