Hatred Is Not The Answer-Terrorists

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I’ve been to Paris three times during my life. The first was almost thirty years ago during our honeymoon, the second time was about five years later and recently we went two summers ago. Like most major cities, I have tended to avoid Paris because there are just too many people in too small of a place. I feel the same way about London, Beijing and New York. So when I frequent these places, I am already on edge. But usually then I meet people who have stories to tell, tears to fall and a love of life that is extraordinary and somehow these big cities become almost magical because I am reminded just how similar we all are in our shared dreams and in our desires.

The last time we were in Paris we were traveling with our children. Around the corner from our hotel was a bank of small restaurants and sandwich-to-go types of places. We entered one of the latter. It was a small place and behind the counter were three men who appeared to be of Middle Eastern descent and spoke Arabic to one another. When they heard us talking with our distinctive American accents immediately their faces hardened. Then when I went to order for our family all of a sudden the place was CLOSED. They were no longer serving they told us. Yet, after we walked outside all of a sudden they were serving again to the lady who ordered a tomato baguette. So I went back in to order only to be told again that they were not open even though there were more new customers being helped. I was mad and sad about the situation but what was worse is that my children were witnessing this and wondered why they would not let us buy their food. And so I told them this:

“For some reason these men do not like us. I do not know why and neither do you. If I had to guess I would say that they were probably hurt or their relatives were probably hurt in some way by American policies or forces. They are probably still upset or angry by this. Of course, we will never know the real reason and I am guessing only to try to understand why someone would hate us even though we have never ourselves done anything to them. So this is why we cannot hate because hatred begets hatred. Anger creates more anger and people do things to one another that they should not. So I want you remember today not because of what happened but because of how we will handle it. For if we let it, the small thing they did to us will someday make us think that we can do something to someone we think has wronged us. But what is most important here is that we must remember that our lives as human beings are linked together in so many mysterious and interesting ways to people we know and people we don’t. If we allow this link of distrust and anger into the chain of humanity that we carry with us it will only create sorrow both for us and others that we will unintentionally effect by this hostility. So we must smile at those men and show them that we see their humanity even though they do not see ours.”

And so we did.

I wish I could say something changed and one of the men smiled back but that did not happen.

Tonight as I sat and watched the news pouring out of the City Of Lights I was dismayed as I listened to the political pundits demanding retribution, retaliation and encouraging a decrease in our hard fought freedoms (as if that will make things safer!) so the world will be a “better place” and I wished that they had been with us that day in Paris. For while the experience of being hated just because of where you come from was a bitter disappointment; I also know that my children learned a valuable lesson on that street in Paris that day. They realized that hatred is not the answer. I hope that calm heads will prevail in Paris and that human beings throughout the world will remember this truth too as they struggle to find a way through the carnage that they have seen and endured.

Sit with the Frustration

frus·tra·tion
frəˈstrāSH(ə)n/
noun
  1. the feeling of being upset or annoyed, especially because of inability to change or achieve something.

As I go back over the notes I have written during my therapy sessions one thing is abundantly clear. My therapist keeps reinterating that I need to sit with the frustration I am feeling and just be. Another thing that remains abundantly clear is I STILL struggle with this. I guess I am rather like a two year old… I want what I want, when I want it. And this means NOW.images-2

Coming from a family where life and death hung in the balance by only the newest that science could offer; that lack of control and unsettledness continues to effect me in ways that I am still unpacking and just beginning to understand. When you have life-threatening illness at your doorstep for years it doesn’t stop banging on the door just because the patient is doing better. In my case I was not the very ill child, my sister was. But in those days parents tried to protect their other children from “the truth” believing that they shouldn’t have those burdens put on them at such a young age. However, in my case, the lack of true understanding and knowledge lead to envisioning things in my mind that were probably worse than any real facts would have been. And basically since that time I have spent my life trying to mitigate surprises and always planning ahead. Frankly, this just doesn’t appear to be compatable with sitting in the silence, sitting with the unknown or sitting with frustration very well. I want purpose and I want action…NOW DAMN IT!

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Making this “sitting with frustration” even worse is that I am suppose to wait until B makes his own discoveries about himself and his own truths instead of spoon feeding my perception of the truth to him. His process is suppose to be his own process but like a famous Hollywood director I have the script already written and filmed in my mind about how the scene is suppose to go. And because feelings are on the periphary for him which makes any sort of immediate action of self-discovery difficult; I am afraid that this film is going to be WAY OVER BUDGET both emotionally and financially.

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And so I sit. Tired and frustrated. Tired of sitting. Tired of waiting. Tired of thinking about all this sitting when suddenly it occurs to me that B is probably just as tired of waiting for me to just sit. What a gift it could be it I could just be comfortable being in this limbo and in doing so freeing him up to make his own discoveries on his own timetable instead of feeling the silent pressure of my discomfort in sitting having to sit with my frustration. This realization sends a shiver of freedom down my stiff spine as I contemplate what it would be like to let others set their own timetables instead of trying to get them run on mine. And just like a passenger waiting for a delayed train getting annoyed at the situation isn’t going to change a thing and it certainly isn’t going to get the train there any faster. So today..a breakthrough… I finally “get” that I must tolerate this frustration without disappointment or anger because in the end I am not in control of it anyway.

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Trying To Find Our New Roles In Life

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Throughout our lives we have roles we take on. Some have been forced upon us and some we take on willingly. Many of these roles we discard as time goes by, some we reinvent in a slightly different form, while some we seem to keep until the day we die. Somehow the latter seem to be the ones that we like the least and yet we retain them the longest.

This weekend was difficult for us. I think that when you are over 50 and going through a “maybe divorce” that one of the biggest issues is the discarding of roles and the discovery of new slots out of which you are now going to behave. After operating from one set of expectations for thirty years it is difficult to recognize and accept new patterns of doing things and unfamiliar ways of thinking. Years of acting one way are difficult to channel into something else and difficult for “the other” to accept.

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I know that in your 50’s it is suppose to be a time of gains. Money, richer relationships, second homes, etc. For me, it feels like a time of discarding stuff including those parts of myself I no longer need or wish to operate from. As I take out this “stuff” I am forced to really look at it and contemplate whether it is of value to me anymore. As a result, I am feeling lighter and freer than I ever have before. But that doesn’t mean it is easy especially for the other person involved. Honesty, in the form of being true to myself, has moved to the forefront of my life which at times hurts B. And while I dislike seeing B feeling uncomfortable and knowing that I have caused his discomfort; at this point in my life I am not sure that I care anymore as long as I know that the truth of who I am…who he is…will make things better in the long run. But what exactly is BETTER? What does that mean?

I guess I won’t know the definition of BETTER until we reach the end of whatever all this is. And I’m okay with that because either way whatever changes I have made I suspect will have led me to a more authentic me.

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And this relationship? It will either be or it won’t but in the end I will be all that I have envisioned and right now that is what feels important.

THE HAPPIEST HALLOWEEN EVER

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Sometimes I am really worried about the young people growing up in today’s impersonal world. Often it seems as if they have little compassion, are involved in things that are questionable, and spend way too much time on video games while not spending enough effort on interpersonal relationships. Tonight, I am pleased to say I am going to have to re-consider those impressions.

This Halloween Andre chose to forego the usual costuming and instead he decided to be the one to hand out candy to all the kids in the neighborhood. I remember years past when Trick-or-Treating was very hard on him. Too much commotion, too much noise and too many scary things. Yet, tonight he wanted to be part of the action; just from the safety of his own front porch.

This evening I heard constant giggling coming through our door from the little kids as they came up to the front porch where Andre was sitting, candy in hand, excited to hand it  all out. Andre talked to every child and had a running commentary going with everyone who approached. There wasn’t one person who came to our house that he didn’t  talk with and befriend. And then something magical happened.

To understand Andre, you have to understand that he has only been invited to one or two birthday parties in his entire life. While kids at school are mostly kind, he has never had much of an out-of-school relationship with anyone. His rapid speech and his way of relating to others due to his autism has made attracting and maintaining friends difficult for him and so I was amazed by what I saw as I opened the front door by chance.

There on the porch stood five gangly boys all of whom had been in Andre’s class last year. They were the popular kids, the ones THE OTHERS all wanted to be like, especially Andre. I watched as each one of them came up to him saying “Hi Andre” while giving him a teenage boy pound on the back usually reserved for young men on the football team.  All seemed glad to see him and each told him that they missed him. But the most profound moment came when one of the boys looked Andre in the eye and said, “School isn’t the same without you. You taught us all so much.”

And then they left.

“Did you see that mom? All my friends were here. I can’t believe it. Wasn’t that great!”

Yes, Andre, it was great and for more reasons than you will ever know. For those boys restored my faith in today’s teens. They are good boys with great hearts and an ability to make everyone feel liked and included. But most of all, I came to finally understand that there are all kinds of friendships, and while Andre’s are certainly different from mine, to him they are every bit as valuable. Even if those friendships occur just for a few minutes at a time on a spooky Halloween night.

Times Past

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I still remember the things my parents did for me that my children or the kids in my neighborhood will most likely never experience. Sometimes that realization makes me sad. Some of this disconnect from my past stems from where we currently reside but some of it is due to the change in times. It seems strange to me how so much of the innocence I experienced of 50 years ago is gone and seems unlikely to return. Things like:

My father standing out in the bitter cold, night after night, pouring water over a homemade ice skating rink. Sliding the water here and there to make sure that the surface was even in thickness and perfectly smooth like glass. Then after several days of hard freeze he would lace up my skates while my wobbly ankles would cross precariously as I put one foot in front of the other, my blades slowly carving up his masterpiece.

Watching our black and white television where killers or carve-them-ups were not allowed to enter our household. Cuss words were unheard of too. The only things on television back then were shows which presented people trying to do their best and to help one another. In short, they showcased families/individuals who loved each other and the positive in life.

My parents pulling us through the streets on sleds to see the Christmas lights that decorated each set of eaves as the snow fell over them; creating a colorful shimmer that I remember to this day. Then, should we complain of cold (which we always did), my mother would magically pull out a thermos of hot chocolate to warm our bodies and our hearts. Such a simple way to show love and concern.

My grandmother making homemade mittens and scarves while my aunt sewed us outfits for Christmas. In addition, my mother always sewed my halloween costume (once out of old drapes) whereas I have yet to sew one. Most kids today have never experienced the thrill and the patience while waiting for the perfect outfit to emerge out of odds and ends that litter the sewing machine table.

Most of today’s kids will never hold an ice cream social, a play, and sell trinkets to earn money for charity. Back in the day, my mother would gather the squirmy and oh-so-hyper six-year-old neighborhood kids together for rehearsal everyday for the entire week prior to the performance. Then we would sell tickets to the big event to all the neighbors. Afterwards, my mother would load all the thespians into our dark blue Rambler station wagon and off we would go to the charity of choice to deliver the money we had collected. Being that this was in the days before digital photography I have grainy superimposed pictures to remind me of these times but I do remember the sense of pride and accomplishment I felt for doing something to help others. It’s something that appears to be lacking from the experience of many kids these days.

Crisp fall days during which my parents took us to the Franklin Cider Mill where we watched the apples being pulverized by the turning of the water wheel and where we ate fresh hot powdered cinnamon donuts on picnic benches while the cool wind blew the sticky sugar off our treats.

Back in the late 60’s and early 70’s the grocery aisle was a real treat. I remember picking my breakfast cereal not for taste but for the records by teen heartthrobs David Cassidy, Bobby Sherman or the Monkees that were on the back of the boxes. How glorious the sound after taking the time to carefully punch out 45’s from the cardboard box. Decoder rings and invisible pens were also prized possessions.

Once upon a time science was  new and exciting and at the forefront of our lives. When discoveries were made it was a time for everyone to rejoice along with renew our sense of national pride. In 1969 when I was just a kid I remember my mother waking me up to see Neil Armstrong walk on the moon.It was really late and our black and white television was fuzzy with the pictures being beamed back to earth. Now big discoveries are so common place that it seems as if the breath-taking excitement just isn’t there anymore.

Riding our bikes within a five block radius and exploring the world like children are suppose to be able to do without fear of injury or death. No wonder so many kids these days are afraid of failing…they never got the chance to try the little things that instill confidence.

Knowing all the people at the stores where we shopped. Back when I was a kid there was the crooked old man (Mr. Banner) who ran the milk store where milk was kept in bottles not cartons. There was the butcher who always smiled at me as he wrapped my mothers picks in white butcher paper. I also knew the liquor store owners because they had a penny-candy section that upon occasion I was allowed to peruse. The Chinese couple (The Kims) at the cleaners were favorites as was the old French lady who made the sweetest potato bread I had ever tasted. These days, unless you live in Europe, those relationships are missing from our children’s lives and its such a shame because these are the people who taught me that people who were “different” than me and my family were loving, kind and interesting. It was they who inspired me to seek out individuals who might teach me a thing or two as I journeyed through life.

These and so many things shaped me as I grew up into the imperfect person that I am but without these experiences I am convinced that I would have thought that the world was a harsh and lonely place; a place that so many of today’s kids believe the world to be.  A life without happy, positive and inspiring memories is hardly a life at all. And that is why I worry about so many of our youth of today.

An Intruder

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I am guilty. Probably most mothers of autistic children are guilty, too. We talk about our children and their difficulties and then add something to the effect, “but K wouldn’t be who he/she was without their autism.” Pretending that having autism is somehow okay. Almost sounding desirable. But, it is not. Autism is not okay and I, for one, am tired of pretending that it is okay in any way, shape or form.

Too often I have heard the old cliche that adversity builds character. That I should be somehow thankful that my children are lucky to be learning character building at such a young age. Well, thank you very much, but, my children have enough character already. They don’t need any more. And they certainly don’t need life’s hard lessons to be pounding at their door at such an early age. Frankly, it isn’t fair that their door is pounded on while others just get a tap. Which brings me to my next point. Life isn’t fair.

Growing up, I remember getting the “you weren’t born with a fairness guarantee in life” spiel from my parents. Well, fairness applies if you have a level playing field. Autism distorts that field. Everything that neuro-typical persons know about the game is understood and is defined in the play book. For the person who has autism, there is no rule book and there is no team. There is just them standing on the sidelines trying to “understand” the game. Like all parents everywhere, I don’t expect that everything should or will be fair for my son. I just want them to be able to have the chance to get into the fairness game and I want the same rules that other kids play by to apply to both of my children.

I also think that the old saying “life is not easy” when applied to our kids is wrong. Yes, life is not easy, but, who says life should have to be so hard? A middle of the road approach by society to my children would be nice.

But, what I hate the most is the kind of unspoken belief that children who are “different” are put on this earth to teach others character traits such as compassion. While it is wonderful that some (and I say some) children will be able to recognize and develop these traits as a result of knowing my son, it is not their primary purpose in life to help others gain their moral grounding. Their purpose is to bring their best person forward both in society and within themselves. And autism robs them of their whole self and their ability to achieve their full potential. Even if the only thing missing from their full potential is just to be able to tell and understand a joke.

Autism is neither my two boys friends nor mine. It is heartless and cruel. Autism has no compassion and shows no remorse. It just walks in our door and into our lives and makes itself at home. It is an outsider who doesn’t belong and I refuse to forget that. Just as we would fight off an intruder trying to get past our front door, so too must we fight autism. We must find the causes, discover better treatments and offer more to those who find autism at their front door. We must offer meaningful services to those with this neurological disorder. And as hard as autism tries to fully push open our door, I will continue to try and shut it out. I will NOT let autism take my sons and I will not let it take me. Until my last breath I will push against that door trying to keep autism and all of its idiosynchrocies at bay. It is a fight that I intend to win.

Copyright 2015

Who I Really Want To Yell At…Upcoming IEP…Shoot Me Now

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So we have an IEP coming up. Any parent who has ever participated in an IEP meeting knows the special kind of hell that is reserved just for us.  It is a game for adults while the pawns are the kids. These are children whose lives can be changed for a lifetime if they only get the help that they so desperately need. Parents wrangle to get what their children are entitled to under the law while school districts try to keep their budgets in line or just disagree for purely reasons of precedence. And with an unfunded federal mandate to provide these services to those in need…well, it truly is a no win situation except in the simplest of cases.

This time when I walk into that room with principals, teachers, school district big-wigs, and lawyers I want to say something meaningful, poignant and straight to the heart. What I want to say is this:

“Every year parents of special needs children divorce. In fact, according to statistics provided by various sources it is estimated that 80-90% of couples whose children are considered special needs divorce; thereby disrupting the most vulnerable of families. These are families in need of two adults in a household to co-parent and provide support to one another while they manage hour-long tantrums, disruptive behaviors, and the close supervision that is often required of children with autism and other neurological conditions. Divorce is ugly. It changes the hearts of both children and adults. It makes kids feel unsafe and unsure about their future.

So why am I telling you this?

Unfortunately, our family may soon become one of these statistics. Although we are fighting to stay together I don’t know if we will win this battle. It is ironic because we have stayed together for 29 years with ABA therapists in our home 5 days a week. We have made it through home safety issues, seizures, special diets and numerous calls from the school. And we are tired. Worn out. And haven’t had time for one another for so long.

So what does this have to do with you and how can you help?

Do what is right by our children. Honor our requests instead of just setting them aside and ignoring them. We know our kids and often we know exactly what they need. Think in terms of the far off future and outcomes that will ensure that my child will one day be a tax paying American instead of someone who needs assistance their entire life.  Provide those things you would expect for your own children or grandchildren. Think beyond and outside of the box. Do what is moral, courageous and honorable. And do it now. Stop being intentionally adversarial and work from the belief that if we cooperate, children with special needs can and will reach their full potential; thereby benefitting this community and nation.

Finally, I am letting you know that while I do not blame you for our marital issues, I do want you to be mindful that the constant extra challenges such as IEP meetings add extra layers of stress on top a marriage that can cause it to eventually sink. Remember these IEP meetings are not a game and our family is not something to be manipulated and discarded without regard. We are people trying to do our best in situations that most of you cannot truly comprehend.

In conclusion I ask you to take to heart the words of James Rachel who said:

“Principles of justice are principles that rational, self-interested people would choose to govern the society in which they were going to live, provided that they did not know, at the time they chose the principles, exactly what their own place in society would be” “– James Rachel’s forward  to John Rawl’s  book, Two Concepts of Rules.