In August I received an email from the Publicist for Kerry Cohen (author of Loose Girl and many other award-winning books) newest book, SEEING EZRA- A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal. The email described her book as an eye-opening and inspirational chronicle of a mother’s struggle to protect her son from a system that seeks to compartmentalized and “FIX” him. I was intrigued so I Googled to find out more.
What I found was a 2008 babble.com article called “What’s Wrong With This Picture? My autistic child doesn’t need to be fixed.” The last sentence of the post got me!
If I am only able to do one thing for him as I usher him through childhood, it will be this: I will protect him from anyone who might make him feel that he is somehow not perfect.
I knew I had to read the book. And read the book I did. I LOVED IT! Finally a book that lays it all out there. A book full of honesty and raw emotion. It doesn’t sugar coat things and claim to have all the answers. It is a quick read that many autism and non autism moms will be able to relate to. It deals with being a mother, being a wife, being a woman. It deals with self doubts: as a mother and in her own marriage. But in the end, really it a love story. A story of a mother’s unconditional love for her child.
As I read the book I could not help but jot down things that spoke to me. I knew I had to ask Ms. Cohen some questions. I was not just content with her book ending. I needed more. Since going out for an Apple Martini and just chatting was not a viable option, (Yes this is the kind of gal I can see my self throwing back one with… and LAUGHING), I settled with passing along a few questions to her publicist with the hope that Kerry would respond.
Guess what, I got back an email with her responses in less than 24 hours! And guess what else… I LOVE HER EVEN MORE now that I read how she responded.
And there is more… I AM GOING TO GIVEAWAY A BRAND NEW COPY OF HER BOOK TO ONE LUCKY MAMA’S TURN NOW READER. Directions on how to enter to win following the interview below.
Without further ado…
ME: You mention something in the beginning of the book that I believe many autism moms feel (I know I have). “I don’t do enough for him, or I do too much. I am never ever doing the right thing.” Since your “AhHa” moment when you were finally able to see and accept Ezra for the beautiful person he is, has this feeling of doing or not doing enough gone away?
KERRY: Somewhat. Mostly. Partly I can relax because he’s at such a a wonderful school, and he’s getting therapy all day long there. And, in fact, the teachers there – whom I adore – often say things to me like, “Ezra is doing xyz here when we require him first to do xzy. Be sure to keep this going at home.” I always nod and say I will, but I never have any intention of doing it. I just want Ezra to be able to relax at home. I’m his mommy, not his therapist. I want him to know he doesn’t have to do things in order to feel approved of by me…I’m aware this is a fine line. Obviously there are some things he has to do, just like my other son. He has to be kind to people and he has to wear clothes while at home (the latter he genuinely doesn’t want to do), but I don’t want to require him to have to do more than my other son does.
The other part of relaxing comes from believing entirely that therapy will only do so much anyway. There’s a great movie called Autism: The Musical (hopefully you’ve seen it), and one of the parents won’t lay off her perfectly lovely, fine little boy. She says, “I’ll do anything I have to to keep him out of an institution.” I thought, Holy hell. That woman has lost her mind.” For one, he was FINE. For another, we can’t make them less autistic. It isn’t going to happen. So, my goal is to help him be functional in the world. But my bigger goal is for him to like who he is.
ME: You talk about the time you visited the psychic and how she said something so profound an idea that is part of every Eastern philosophy and religion. “What is, is. Let it be.” I for one want to cross stitch this into a pillow (that is if I knew how to cross stitch) and carry it around as a reminder for myself. How do you feel this statement, this realization or reminder perhaps, really affected your life, and how do you remind yourself to just LET BE when you are deep in one of those moments that all autism moms unfortunately know all too well?
KERRY: In many ways we moms of kids with special needs have to know and live this idea more than others, I think. We constantly have to remind ourselves of it. Perhaps we should all take some cross-stitching classes? Get it tattooed on our wrists? I think because I had to learn to live this truism with Ezra, it taught me to do it more in the rest of my life too – which is part of what the book is about, particularly in terms of what happened to my marriage.
ME: You make a very powerful statement about the media in the book. You say, “…the media encourages the notion in our society that autistic people are untenable, empty shells, that autism steals children from their parents like the devil might.” How do we change this perception?
KERRY: Well, for starters, we have to stop focusing so much on the cause and this notion of a cure. All of that is so incredibly harmful. This is such a big part of why I despise Jenny McCarthy for what she did. That’s right! I said it! I just thought she used her celebrity status for so much harm by suggesting that autism is terrible and we need to get rid of it. Yes, she focused on “greening” vaccines, but by doing that she encouraged people to remain in the mindset that terrible things were happening to our children. She encouraged fear about autism. She made it more likely that other people will look at our children and think, “Please, God, don’t let that happen to my baby.” She made people believe, along with the media, that autism is a tragedy. So, how to change it? Let’s tell more stories like mine! Let’s put research into support for autistic people rather than prevention. Let’s stop creating bogus research about how to kill off the autism and start paying attention to what science tells us.
ME: How do we get the world to see our kids for who they really are, to accept them for the unique individuals they are, to appreciate their talents and special abilities, when in our own autism community there is so much tension, controversy and animosity among us?
KERRY: I fully believe that parents who spend so much of their energy trying to make their kids “better” all the time are just terrified of their grief. I get that. Who wouldn’t be? It’s painful to sit inside it, to really know in the truest way that our kids are different from others. They will never be welcomed. They will never be supported. They will always be autistic. I get how some parents work so hard to avoid those feelings. But….and I hope this isn’t unfair…that is about protecting themselves. It’s not really about helping their kids. What helps a kid more than him believing he’s worthwhile in the world just as he is? Every last adult autistic I’ve spoken to has told me that the only thing that sucks about being autistic is other people making them feel like they aren’t right or good enough. We can support and encourage and, yes, provide help and therapy, for our kids while still acknowledging how perfect they are, can’t we? We all want the same things, I think. It would be great if we could acknowledge that with one another.
ME: What advice would you give to a mother with a newly diagnosed child or perhaps one who is starting to go through evaluations to receive a diagnosis?
KERRY: Find other mothers who have been there. Get away from those who are convinced they know everything about autism (no one does yet!) Trust yourself as your child’s biggest advocate. Talk honestly with your partner about your feelings. Mostly, know that you will live through this – your life will change in ways you hadn’t expected, yes, but that’s not all bad. There is no tragedy.
Now if this interview doesn’t make you want to run out and buy her book then I am not sure what will. BUT WAIT FOLKS… now is your chance to win your very own copy for FREE!!!! Yup the winner will receive there own brand new copy a $25 value (Although I believe it is much more valuable than that if you ask me.) and it will be delivered to you directly from the Publisher! How about that! Here is how you can win.
As a mandatory entry you must leave a comment below stating one of the many wonderful things about your autistic child! (Example one of mine could be Jay has a wicked sense of humor.)
Want extra chances to win? Do the following (or leave me a separate message for each saying you already have done them) and then come back here and leave a comment saying you did.
– Like Mama’s Turn Now on Facebook (1 entry)
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-Follow @MamasTurnNow on Twitter. ( 1 entry)
– Tweet the following message ( 1 entry for every tweet and you can tweet once a day but you must come back here and leave a message saying you did.) on Twitter: I just entered to win the book SEEING EZRA a Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal @MamasTurnNow http://wp.me/p1pu3Q-bG
– Subscribe to Mama’s Turn Now. (1 entry)
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-Place a button for Mama’s Turn Now on your blog and/or a text link on your blog roll. Post a comment with your blog’s URL. (1 entry for button; 1 entry for text link)
One winner will be randomly selected from the qualified comments received by Saturday, September 24th, 2011 at 11:59 PM EST. Please leave an email address on one of your comments. Winner must respond within 72 hours or another winner will be drawn. Contest is open worldwide!