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"For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil,
to give you a future and a hope." Jeremiah 29:11 (NKJV)

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Sunday, April 22, 2012

What I Learned from Eustacia Cutler

I wanted to pick up where we left off in regards to the conference I attended where Mrs. Eustacia Cutler, mother of Dr. Temple Grandin, lectured to a group of parents, individuals with ASD and professionals. Like I mentioned in my previous post about Eustacia, the entire group sat in absolute silence clinging to every one of her words. She had given us handouts (typed with a typewriter, so cute!) but I chose to listen and take in everything she was saying. I also took notes of those things which she said that touched my heart or that I felt were specific words of wisdom. I wanted to share my notes with you (I will use the word "autism" to refer to all autism spectrum disorders. Asterisks mark the statements by Mrs. Cutler that I found most touching.):

The concept of "identity":
- "We are social creatures, dependent on each other for our identity" (direct quote)

-** Identity is a fragile core of our being. It is born of  moments when we feel most "ourselves." We acquire its structure in increments, gradually becoming visible to the world. (paraphrased)

- Autism is a family disorder; it changes the entire family identity

-** "When a baby retreats into the world of autism, not one, but two identities are affected. A baby needs a mother to know she's a baby, but a mother needs a baby to know she's a mother." (direct quote)

-** "The sensory scrambling facing the (autistic) child is reinforced by the emotional scrambling facing her parents. When the usual (social-emotional) responses can't grow, consciously and unconsciously, a whole family is changed." (from A Thorn in My Pocket, p. 167)

- Nurture is a two way street, and is therefore affected by autism when the child can not give back

Mrs. Cutler's advice to parents:
-**As parents and caregivers, we must focus on fulfillment and happiness, and not a cure

-** Tears suffocate thoughts

-** Only listen to those who you feel are worthy of listening to

-** "Tantrums are hard to handle, and fecal smears are smelly, but exclusion breaks the heart" (from A Thorn in My Pocket, p. 38)

- When you feel at the end of your rope and like you won't make it through as a parent (paraphrase), "Tie a knot and hang on. It won't be easy, but you'll get there" (direct quote)

- There are no answers, only choices. Choices change. You can only grow by making a choice and making a change. Change can be threatening, but going back to the same path creates neurological synapses and they become behavioral patterns... and THAT is NOT good choice. (paraphrased)

- Men tend to take autism harder than women, as it directly attacks their "sense of honor." It takes away not just any child but HIS child and it cannot be "fixed." (paraphrased) "Odd that autism is primarily a male disorder" (direct quote)

- "The child with autism has to think hard all the time. He has to work out each (social) exchange consciously, often at the same time that there's another coming at him--and another, and another... No wonder he gets exhausted; no wonder he has tantrums; no wonder he's rigid." (direct quote)

For professionals:
- Our/Your professional skills can make a parent feel hopelessly inadequate (paraphrased)

- Parents of autistic children are best served when the professionals act as "coaches" to teach them how to work with their child, therefore giving them the necessary tools to use every day (paraphrased)

All of this information comes from Eustacia Cutler's Lecture at the Boston Autism & Asperger's Syndrome Conference presented by Future Horizons, Inc. (http://fhautism.com/) on March 16, 2012 in Danvers, MA. I take NO credit for any of this information... I am merely sharing with you what Mrs. Cutler shared with us based on her experiences raising Temple. Some of these are paraphrased, based on how quickly I was able to write what she was saying. Some are direct quotes. I hope they will be a blessing to you and will help guide you in your journey on the autism puzzle. Enjoy and feel free to pass this on, I just ask (beg) that you give Mrs. Cutler the credit for any/all of the following information. 

To learn more about Eustacia Cutler's story, please read her book A Thorn in My Pocket and/or read her article "WHO IS YOUR CHILD AND WHO ARE YOU?: Coming to Terms with Autism" in the 'Perspectives' section of Autism Advocate (Second Edition, Autism Society of America, 2009).

Soon I will be sharing with you my own thoughts on identity as a parent of a child with special needs and as a Christian...

Blessings to you!

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