Elise Ronan
Justice, justice, you shall pursue....
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Becoming an autism-warrior-parent: Channeling Deborah, Esther and Miriam

Like soldiers in combat, mothering a child with special needs means constant preparation and never letting your guard down

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 continued 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.

About the Author
#RenegadeJew ...Elise's specific background deals with the practical aspects of raising special needs children. She has over 20 years experience advocating for her sons and others. Her motto: Don't put off the important things. Stand up for what you believe in. Do what is right and honest. Have patience. Have self-respect. Be kind. And above all BE BRAVE. Elise is a graduate of Boston University Law School and a Certified College Transition Coach for Persons with Asperger's Syndrome. She blogs under a pen-name to protect her sons' privacy.
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