The Season of Freedom and Special Needs Parenting

By Elise Ronan – Times of Israel: Freedom. The Jewish people are consumed with freedom. From our very earliest beginnings we fought for our individuality and the right to be whom we chose to be. Abraham started it. We can blame him I suppose for imbuing in our genes the need to be independent; to think for ourselves; to rely on our individuality and abilities alone. We Jews, personify freedom. We honor freedom, independence, self-reliance and self-discovery. We promote this freedom of choice in the celebrations of Passover or Hanukkah or remembering Masada and Bar Kochba. We, the Jewish people, have always held tightly to our need to choose our own path. We love being the iconoclast.

But what do you do when everything you were brought up to believe in is threatened? What do you do when your freedom, independence and abilities are truly called into question? When that inherent need to take charge of your life is no longer part and parcel of who you are? What do you do when you know that even with all the love that you have for your child, you need help from strangers? What do you do when you realize that you cannot do it all alone? That somewhere in your soul you realize that if you love your child enough, you need to hand their future over to a “village” of people in order for your child to survive?

Now this “village” is very different than the concept of “community” in Judaism. We are a universal People, we Jews. We are distinct human beings and at the same time part of a whole community. We are the inheritors of a legacy that has shaped human history and at the same time we are individuals with wants, needs and desires. We are ourselves and at the same time we are the embodiment of all Jews.

But a village that you create for your special needs child is something totally different than a community. When you have community in Judaism you begin by saying I am a part of something. It is a positive uplifting experience that gives you pleasure, succor and direction. You begin by saying “here I am.” But that is not how special needs parenting begins. Special needs parenting begins by asking “what am I to do now?” “Where am I to go with my child?” “Who will help my child” and in the end, “who will love my child enough to care for them when I am gone?” (#youmightbeanautismparentif You may have a will and a guardian picked out, but in the end you know you can never, ever die.)

The first thing you feel, as a special needs parent is fear (yes, with alot of pissed off thrown in too). Complete unadulterated, gnawing at your heart fear. Fear that takes your breath away. It changes you. You become someone else. You are no longer the you, you knew. Your soul is consumed. And you need to acknowledge something that goes against everything you ever thought you would have to acknowledge when parenting…. You have to admit that you have no idea how to help your child. You are at a loss. You feel so abjectly alone. You feel defeated in that you must recognize your need for strangers to help and guide you in this journey.

It is an interesting epiphany when you can finally realize that you need a village to raise your child. That no, you cannot do it alone. We are taught that parenting is something we pass on from generation unto generation. It is why the jokes abound about mommalies and daddalies when talking to our children. We see and hear our parents in ourselves. But that changes when you deal with a special needs child. What worked before will not work now. What was done for generations will not help your child. The concepts that so successfully raised multitudes of human beings no longer apply. Parenting a special needs child is not innate. It is a methodical thought out, wholly planned process. It is a unique understanding of parenting.

But what is most important when you finally acknowledge that you need that village is to remember above all else, that you have NOT failed. It is not an indictment of your parenting, but an acknowledgement of what a good parent you truly are to know you need help. To recognize that you cannot always be everything to your child is important. To know that there are others out there who are capable of providing support is very important. To recognize that if your child is to succeed in life, they will need more than you can give them takes parents who see beyond themselves. It takes a type of strength, something inherent in a free and independent people, to recognize that you cannot do everything all alone. Asking for help for your child takes bravery, it gets you beyond the fear.

Parenting a special needs child is walking into an unknown future, just as the Children of Israel walked out of Egypt to a future without direction, and yes most of us do it without the missteps of the golden calf (well, as best as we can anyway). Because unlike those who waked into Sinai, we know that we cannot understand or have control over the future. We know no idols or talismans will protect our children. By recognizing that we need help we have proceeded past that initial soul crushing terror and are ready to produce a future for our children. We know we will have to do our best to create a happy and positive world in which our children can live. We know that we can create to the best of our ability, a village of people who love, nurture and support our child. We know that we can only do the best that we can, no more. We have acknowledged, stripped the confusion from our souls, because in the end we finally admit that we too are merely human.

We learn over years, days, hours, even minutes, that the trajectory of our lives can change in an instant. We understand that community is one thing and creating a “village” is another. We try to impart unto our children what we can give each of them and grasp from strangers, who can and in many ways become like family, their knowledge and compassion to help our children succeed in life. Freedom and independence is not always about being steadfast and singular in our outlook. It is not always about standing on our own two feet. At times freedom and independence is knowing, just knowing, when we know nothing at all.

One day during a support group meeting, someone asked me what I would have done earlier in my children’s lives. I think they were looking for some great explanation of how to handle issues and events and what I might have done differently. They were looking in some way for guidance on how they should process and prepare for certain problems that could arise. That of course is what I do to help people. Give them the benefit of my past experience. Practical and realistic supports that can help with the day-to-day. I knew they wanted specifics. But I also knew, that before you can have specifics, before you can create a program of support, before you can produce a village, you need to acknowledge the reality of the situation and recognize your own human limitations.

So I answered simply, “ I wish I had been braver sooner.” And I knew, at that moment, with that acknowledgment, that I was  finally, truly, once again, on the path out of Egypt headed towards freedom. For the first step towards freedom is recognizing your fears. Second step is not giving in.

Related:

83 percent of brain injury vaccine compensation payouts were for autism caused by vaccines

Technorati Tags: Special Needs,Parenting Autism,Israel,FReedom

Rejecting God; Atheism and Autism

By Elise Ronan – The Times of Israel: I want to introduce you to a term of art, “autism syndrome behavioral study of the week.” There is generally some new study into autism every few months. Most of them detail what may cause autism, why autistics may do certain actions, and who is best able to handle every autism–related issue that abounds (usually the individuals who did the study of course). Unless it’s a hard science discussion about autism, something that may truly help my boys, I generally shake my head and just say “whoopsidoodle.”

In fact, as a mom dealing with autism issues, I usually don’t wait for the latest revelation from the behavioral sciences ivory towers. They don’t tell me anything I don’t already know. I think to myself, heck I could have told the talking-heads the same thing as the study reported, and charged half as much as the researchers. You see my research is on-going and most of it has already taken place over the last two decades. I call it, life in the autism-fast-lane.

Now the real interesting aspect about the research that is done into autism behavior is that we, the parents and those self-advocates on the spectrum, have been ready, willing and able to tell the autism gurus the truth about behavioral issues and outcomes. But does anyone listen to us? Nope. It’s truly about time someone who has some pull did just that. Ask us and we will tell you the whys, wherefores and the whatnots. If the Phds want we will even let them take the credit for the study in its entirety as long as it is something that helps the majority of those in the autism community.

Furthermore, it’s also a question of what do you do with the study? Does anyone actually act upon any of the findings or do they just chalk it up to scientific research, put it on their resume and apply for another grant? How do these research studies actually benefit the average person with autism? Do these studies actually change society in anyway? Perhaps that should be part of the grant proposal. “How is your research actually going to benefit the day-to-day life of someone who lives on the autism spectrum?” Answer the necessity of that question and you get some of those very very very rare research dollars.

Unfortunately one of the rather more useless studies, to have emerged from the minds of Phds is to tell us that those with autism have the propensity to be atheists. Really, you don’t say. What a shock that people who operate with literal minds can’t and won’t take the leap into the realm of faith. So once again, how does this waste of time and money actually provide supports and programs for those adults on the spectrum?

Moreover, the study, interestingly enough, also missed out on one big factor. For some, like my oldest, it’s not about literal reality versus faith. It is about the feeling of abandonment. God’s abandonment. Not because he has aspergers. Quite on the contrary. He is very happy to have an autism spectrum disorder. His anger at God is something entirely different. Something not even related to himself, well not directly anyway.

Oldest-son was a Holocaust major in college. The more he learned about the tragedy that had befallen the Jewish people the angrier he became. Not just at the world at large but at the idea that God exists. Understanding why God saved the Jewish people from bondage in Egypt and had not saved them from the Nazis, isn’t something he could assimilate. And no matter how many times I tried to get him to read what religious people had written about the existence of God and God’s miracles in modern day juxtaposed with what happened during the Holocaust, it didn’t help. No matter how many times I tried to explain to him about the human responsibility connected to freedom of choice would he budge from his objection to the existence of God. Even when he took a class on Judaism, something that I thought might answer many of his questions,  it didn’t help. In fact, he drove the Rabbi to distraction.

Ultimately, I tried to point out the miracle that is Israel and how the Jewish people have survived. As a student of history he knows the story of the Jewish people. He knows the modern need for Israel and the place of the Jewish people in the history of the world. To understand how he views the world now you need to know that my nickname for him is traditional-secular-Zionist.

My youngest-son, on the other hand, is an agnostic. He is not sure what to make of God. He is not quite certain that he should just throw the idea of God away like his brother has done. Honestly, I think he is hedging his bets at the moment. Deciding that it might not be a good thing to anger the al-mighty powers that be in the long run. He is going to wait and see how things turn out. I figure he is trying in some way to manipulate the God-issue to his advantage.

Interestingly, one of the things that no one tells you in these wonderful studies on autism (but something we already know) is how adamant those with autism can be about their philosophies and beliefs. Some would call it rigid. I like to think of it as fervent. For an interesting view of daily living, just try living in a home with aspergeans with wildly differing views on major issues of the day. The continual individual need for them to try to get the other family members to agree with them creates a video game-like loop on steroids. It’s the same level over and over again with no one winning. Eventually you run out of lives (and aspirin for your headache) and you simply have to put a cabash on the entire discussion. You have to try to teach everyone to agree to disagree. Which also doesn’t quite work out at times either, since that lesson generally devolves into a discussion of why you need to respect someone’s “inane” opinion.

Now with Seder just around the corner, discussing the issue of God and his wonders becomes a rather interesting time in our home, once again. Because of the boys’ intense attachment to their own philosophies we have had to sit them at opposite ends of the room during the Haggadah portion of the evening. We have instructed them to ignore each other. Basically, no fighting, yelling or name-calling allowed. Meanwhile we find new ways to engage them and carry on the tradition of recounting the exodus from Egypt. Of course, when we get to the part where the Children of Israel are finally freed from bondage, the oldest without fail brings up the Holocaust. Hence, we begin, once again, our own unique version of life in Jewish-Aspergean-Wonderland.

Wrestling with God

The Search for Universal Truth: God and your Aspie

And just so you don’t think that the oldest only cares about Ashkenazi Jews here’s a link to his senior thesis:

History of Antisemitism in the Arab and Moslem Worlds

Yeah the research for that paper didn’t help with his acceptance of God either.

Related: 

Study shows exciting insights into the mystery cause of Autism…

Technorati Tags: Autism,God,Jews,Thoughts,Behavioral Scientists

Becoming an Autism-Warrior-Parent, Channeling Deborah, Esther and Miriam Read more: Becoming an Autism-Warrior-Parent, Channeling Deborah, Esther and Miriam

By: Elise Ronan | Ops & Blogs | The Times of Israel

It’s an interesting time of year. Spring. First we celebrate Purim and then Passover. My favorite part of both holidays is that their stories are replete with female heroines. And not the meek and mild kind of heroine, but one who stands up for what she believes in and risks everything in order to obtain her goal: freedom and safety for the Jewish people.

I suppose the earliest Biblical story that I always enjoyed was the Deborah story. Probably not in small part because that is also my Hebrew name. A woman who could stand her ground and defend what was hers always intrigued me. Her ability to lead men into battle and win against a stronger, more formidable foe is not a lesson lost (and yes, I know she had Barak at her side. Well I am lucky I have the husband at my side). There is fortitude among women when they encounter adversity and they can imbue themselves with an uncanny strength to protect hearth, home and those that they love.

Not by coincidence when you become the parent of a child with a special need, you summon up a strength that you didn’t know you had in you. I call it the “warrior-parent” gene. Of course all good parents are characteristically protective of their children and fight for their child on any given day, but we, we warrior-parents, are a different breed of human being. Our fights are not simply with society and the world around us. Our fights are with the everyday challenges of everyday living.

We are faced at times with a more formidable and powerful, implacable foe than the uneducated and the unaware, we fight the daily unknown. For it is not known how our child will react to change on any given day; whether the weather will set them off in a downward spiral; whether they will be able to wear clothes without feeling pain; eat a particular kind of food without deleterious effects; become overwhelmed by certain kind of lights in a store, which may turn into a sensory overload so bad that you have to find a quiet place for them in the middle of a busy city. Perhaps the unknown of this particular day will be that because your child is nonverbal they will lash out in frustration at a teacher or student with that inevitable call from the Principal, or perhaps a high functioning child will misunderstand a social cue and become so upset it leads to a suspension from school or even worse, causes interactions so bad with their peers that they become the target of bullies.

Everyday brings a new and different challenge. We can prepare for the unknown in some ways. Much like a general prepares before a battle. Every contingency and every outcome is reviewed and gone over time and time again. You have action plans. You have physical plans. You have mental plans. You have alternative plans. You have Plan A, B, C all the way down to Z. You know in your head what you are gong to do under XYZ situations. You prepare yourself for the worst, but hope beyond hope every day for the best.

Recent studies have even shown that the parents of a child with special needs (more directly a child on the autism spectrum) have the cortisol level of soldiers that have been in continuance combat. You are on, at every moment, at every day. It never ends.

I suppose that is why at my most difficult moments I channel my Jewish heroines. I ask those that came before me for their strength and wisdom. I ask for their energy and their fortitude. I see Deborah and Barak standing on Mt. Tabor ready to fight the Philistines, simply for the right to be a free people. I see Esther risking all that she had to save the Jewish people from slaughter. I see Miriam helping her brother Moses lead the Jewish people to freedom from bondage. I also see Hannah Senesh, Anne Frank and the myriad of Soviet refuseniks. I see Golda, the early pioneers and those who were unafraid to build their dreams. There is a strength in these women that speaks to me as a warrior-parent.

I also remember the strength of today’s Jewish woman; the one who lives in Sderot rushing with her babies to a shelter when there is a red alarm; the one who raises her children in the Golan, who lived through the last war and is going to endure the coming war with Hezbollah; or the mother who lives in Judea and Samaria, especially one now who has spent a year visiting her injured 3-year old in the hospital or the mother who was slaughtered along with her children for the crime of being Jews living on Jewish land. I have never met these mothers, but I understand their fortitude and their determination. I understand their strength.

And as I fight my fight as an Autism-Warrior-Parent, the one I am destined to live with in my life, I too think of all of these modern Jewish women. These other warrior-parents. And I know that in the end we, the Jewish women of this world, are all the inheritors of these legacies of strength, determination and fortitude. We, the Jewish women of this world have passed on from one generation to the next, that we are entitled to ensure, that above all else, our children have the right to be free and live without fear. This, this is what we fight for and this is who we are, this is what our history has made us, we warrior-parents. This is the legacy of our ancestors.

And for that legacy alone, we, the Jewish-warrior-women of the world, are truly blessed.

Related:

83 percent of brain injury vaccine compensation payouts were for autism caused by vaccines 

78 percent increase in autism rates over past decade coincides with new vaccination schedules

What It's Like to Have Autism 

Autism Epidemic

Autism Spectrum Disorder has Risen to New Heights 

Vaccines: Cooking Up a Witches Brew of Death and Deceit

Technorati Tags: Autism,Bible,Jews,Israel,Strength,Moms,Parenting,Love,Health,Warrior Moms,Autism-Warrior-Parent,Epidemc

Self-Important Intellectuals are Neither Important nor Intelligent: Autism Meme and Dehumanization @Guardian

by asd2mom

Cross-posted at Raising Asperger’s Kids

I have written on the subject of using psychological and developmental disabilities as insult before. Usually my disdain for the self-important pundit goes to those who attack individuals with intellectual disabilities.  Here, Here, Here  Unfortunately there is now a new trend in the writings of those who consider themselves intellectually above all us common-folk, these so-called intellects have decided to use autism as an insult in political discourse. HERE  (I have also written about the use of “autistic” as comic fodder HERE)  Meanwhile, today I came across a new post found in The Guardian (Read about it HERE). The article is entitled “If we accept Israel is metaphorically autistic we lose all hope of change.” No I didn’t leave a comment as they were already closed.

The Guardian is one of England’s leading newspapers. It is supposed to be a leading indicator of the thought processes of the intellectual, or rather the intellectual left-wing elite. Personally I don’t read it. It wreaks of antisemitism and for that reason alone there are watchdog blogs in the Jewish community that continually monitor their press. If I read anything from Britain its in The Daily Mail or The Telegraph. I don’t have to agree with everything written on these pages, but at least they don’t make me want to lose my lunch or bleach my brain. One caveat: There is a terrific advocate in the autism community Kristina Chew who writes occasionally for The Guardian. I do read anything she writes, even when I disagree with her. Her personal blog Here

The interesting issue concerning this latest anti-autism screed is that these left-wing intellectuals, who champion identity-politics and political correctness in their nations, these hypocrites who call out those they consider Islamaphobes and racists, seem perfectly fine with insulting the entire community of autistics. They think that by asking Simon Baron-Cohen about autism that that somehow insulates them from being labeled a bigot. Guess what, it does not. In fact one of the commenters dismissed the authors talk with Baron-Cohen because  Baron-Cohen, himself being Jewish, would not accept the idea that Israel is akin to an autistic person. (Heck if you can’t get a little Jewish conspiracy crap in The Guardian, you can’t get it anywhere. By the way, this is also what passes for acceptable discourse in the progressive world of The Guardian.)

Now don’t get me wrong. I am completely revolted by this latest diatribe against Israel. I am an ardent supporter of the State of Israel. The only more supportive of Israel you can get than me, is those who leave the USA to go live in Israel. But my issue with the above article isn’t about their attitude towards Israel (that is an article for a different day.) My issue is how easy it is for the intellectuals to disenfranchise and demean an entire community of people. Of course I really shouldn’t be surprised by this act of intellectual dishonesty. The Guardian editors tend to dehumanize anyone they think is their political opposite, so to deny the humanity of the autistic community is not really a giant leap for them.

The idea that somehow the autistic community is a monolith and that every autistic person is a clone of “Rain Man [Blu-ray]” is beyond ignorant and outdated. The idea that autistics are without empathy, are violent and are withdrawn has been scientifically proven void. The autistic community itself, particularly the self-advocates, are open, vocal and without par in teaching about the realities of living with autism and what they hope for the future. Autistics are proud of who they are, and quite frankly happily, openly, vociferously and proudly declare their existence and their humanity. (In fact both of my boys are not without their own autism-as-insult bullshit meters. My younger son just took someone to task on twitter for using autism as insult. He proudly proclaims his aspieness in his profile.)

I find it rather interesting that people who are so touchy and thin-skinned, as The Guardian progressives tend to be when it comes to their own selves, have no problem with insulting an entire group of people. Oddly collective-identity-punishment for the politically correct seems to be a new version of the old theory of replacement theology. Moreover, the idea that autistics are now fair game to be maligned bespeaks of eugenics and quite frankly Nazism.

Yes I know people throw the Nazi adjective around very easily into today’s day and age, but remember before the Nazis began the Final Solution to the Jewish Question, they practiced how to efficiently kill on the intellectually and psychologically disabled. No doubt there were many autistics who were marked for murder during those experiments. On another wholly disturbing level, political scientists have noted that there are  eight stages of genocide. This Guardian article employs most of them in dehumanizing autistics and Jews.

This is why the autism as political insult is not only intellectually dishonest but it is intellectually dehumanizing and morally repugnant. The purpose of The Guardian article was to say that Jews have no right to self-defense and that Israel has no right to exist. It states that Israel ‘s actions are beyond the pale of decent society and compares her actions to those of autistic persons. The forgone conclusion of the article is that genocide against the 6 million Jews of Israel is a legitimate action. By equating the actions of the State of Israel to members of the autistic community The Guardian newspaper ipso facto says autistics also have no right to exist. The Guardian author promotes the Nazis agenda that Jews, and those with disabilities, need to be expunged from the Earth.

I suppose the question then becomes what to do about this antisemitism and anti-autistic meme that has taken hold of certain levels of society? Is it simply enough to write and castigate those who have so fallen from the tree of human civilization that their politics hearkens back to one of the darkest periods in human history or is there more that we, as a society need to do, to teach, challenge and promote a concept of acceptance, tolerance and the golden rule?

*****

Meanwhile November 9th is the 75th anniversary of Kristallnacht. This was the beginning of the Nazis evil march through Europe. It is a good time to remember that these attitudes of disenfranchisement and dehumanization are anything but gone in the world today.

Here
Here
Working definition of antisemitism EU and USA
Angela Merkel on antisemitism and the 75th anniversary of Kristallnacht

Social Justice, Humanity and Autism
Blood Libeling Those with Autism

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Oh OK. You know I couldn’t help myself. Here is a blog I wrote about Israel, the Palestinians and the Peace Process. This article is a good answer to the same infantile Guardian article referenced above:  Cognitive Dissonance: Releasing Murderers in Order to Secure Peace

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