Autism Plus Down Syndrome: One Mom’s Memoir for Autism Awareness Month

For Autism Awareness Month this April, I want to take a second and recommend a beautiful memoir called Know the Night by Maria Mutch. Her son has Down and also autism. She has a lot of heartful advice for all of us:

KK: How common is a dual diagnosis of Down syndrome and Autism? MM: The presence of autism in people with Down syndrome has really just started to be recognized in the last dozen years or so. The thinking used to be that a person with Down syndrome somehow could not also be autistic. Now there’s a better understanding of autism and its incidence alongside other major diagnoses. My son Gabriel’s autism diagnosis didn’t happen until the age of six because it was difficult to tease apart his characteristics. When his diagnosis was finally made, I went through all the typical emotions, including being angry; in the end, however, the diagnosis proved to be a relief because there was less mystery surrounding what was happening to him.

KK: Why did you write this memoir about your son and his special needs with a backdrop and parallel story of a historical narrative?

MM: I wrote about the polar explorer and aviator, Richard Byrd, and the time he spent alone in a hut in Antarctica in 1934, in part because I came across his book, Alone, and loved it. During the two year period when Gabriel developed his sleeping disorder, I was pretty much at loose ends and found that in reading Byrd’s book there was something like solace. The story had some parallels with our own, if only figuratively, and there was the presence of night in Byrd’s book as well, as he was in Antarctica during the part of the polar year when the sun doesn’t rise. The other very important reason for writing about Byrd was because I noticed, in the unique stories of isolation of both Gabriel and Byrd, a universal narrative about fearing being alone and longing to connect. I could enlarge the story of Gabriel and me by talking about Byrd, and then go beyond that. We all know what it is to feel isolated, regardless of our life circumstances.

KK: How do you think music—especially jazz—has been therapeutic for you, your son, and for your whole family?
MM: 
Discovering that Gabriel enjoyed jazz was a marvelous thing. It gave us the opportunity to connect with him and see another side of him, and it gave us a language, in a way, when he had lost all of his spoken words and signs. Gabriel does not have the auditory sensitivity that is common to children on the spectrum, and so we were able to maximize his tolerance. Listening to live jazz, in particular, gives us another way of getting Gabriel out in his community in a way that seems really meaningful. Jazz musicians tend to be very accepting of him in the audience and he has often rewarded them with some nice rocking or clapping (although, as he is now a more grown-up teenager, his response is more tempered than it used to be). This experience also taught me to love jazz—I had certainly been a listener prior to Gabriel’s introduction to it, but listening with him taught me to listen more closely and to tolerate some of the more dissonant forms. His willingness to sit with some pretty complex music showed us that his response to the world is also deeper and more complex than some people would guess.

KK: It’s April and Autism Awareness Month, do you have any advice for other families dealing with a dual diagnosis that includes autism?
MM
: The first thing that comes to mind is that they are not alone. Getting a second major diagnosis can feel overwhelming because just when you think you’ve read your last book about the original diagnosis, you discover there is this whole other world you have to attend to; and meanwhile you still have to care for your child, possibly other family members, and also care for yourself. So my advice is to start very, very small, and also to recognize the need for fun—something that I think people with ASD can be robbed of in the name of therapies and developmental charts.

KK: Anything else you’d like to say about your book?
MM:
I was on a search for answers but quickly discovered that answers are not the point, only better questions. The search for meaning is central to life, and maybe one of the benefits of having someone like Gabriel in our family is that he gives us plenty of opportunity to philosophize and to ask questions. He deepens our experience; hopefully, in some fashion, we are able to do the same for him.

KK: Mother’s Day is coming. Tell us what’s special about your son please in your own words!
MM: 
Part of the answer to this is contained in my previous response; another part of it is that he is a wildly powerful person. I have seen him, almost routinely, change people, including those who were reluctant to interact with him or work with him; he turns people into friends and advocates. The children who befriended him in elementary school where he was fully included in the typical classroom are still benefiting from having known him and he from knowing them. Every year when Mother’s Day rolls around, it feels like a sacred day to me. Gabriel changed me most of all by making me a mother.

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Kit Chase’s New Book, Her Etsy Shop and Free Printable Paper Dolls!

Kit Chase! One of the sweetest Etsy artists ever writes about her new children’s book that Publisher’s Weekly loves and also about her awesome Etsy shop. She even created exclusive paper dolls for all of us to print at home at the end of this post. (See a special offer as well.)

“My husband, Adam, and I own and operate the Etsy shop, Trafalgar’s Square, where we sell my hand-painted designs as prints, wall decals, and, soon-to-be-released greeting cards. Adam does all the operating (printing, packaging, shipping and communication), and I get the fun job of coming up with new designs and illustrations. My work on Etsy caught the attention of both my agent and editor—both of whom reached out to me separately through the site—and ultimately led to my first picture book contract.

Oliver’s Tree is my first picture book (it will be in stores March 20 of this year!). When I first started work on the story idea, we had two little girls with a third baby girl getting ready to join the party. We had just moved from a teeny, cramped apartment into a little house with an enormous yard and a tree. What a tree! With gnarled, low-hanging branches and big, shady leaves, that tree became the children’s favorite friend. As I watched my girls trying to climb it “all by themselfs,” it reminded me of my own childhood of thwarted tree-climbing attempts. Standing on tip-toe at the foot of the tree, hugging the trunk, and waiting expectantly for something magical to happen that would send me high up into the branches.  Or just waiting there with arms stretched, looking expectantly up. And waiting. Or, the inevitable, actual tree-climbing attempt, that ended with me sliding down the rough bark on scraping hands and knees. That tree brought it all back to me. So, when it came time to write a children’s story, it of course had to be about three friends, and what better play-thing for them to have than a tree?

With three little girls all under 7 (and as I write this, yet another baby girl on the way—maybe we should start a water polo team?), and writing and illustrating books, all on top of dreaming up new illustrations for the shop, things have a tendency to range on the side of um…shall we say crazy-fun? Most of the time, it feels like we’re running something like Alice in Wonderland’s Mad Tea Party in Mrs. Piggle-Wiggle’s upside down house. The wee hours of the morning are my greatest ally. Laundry is my nemesis. I do a lot of brainstorming for my books and illustrations while watching my children play and interact with one another, and I do most of my sketching in the car when we go on family outings. Not exactly a traditional lifestyle, but it’s definitely stimulating. And jolly.     
If there’s one thing I’ve learned in the past few years, it’s: Save the spotless-house-look for Pinterest and photo shoots. As a parent, you’re in the middle of the biggest creative process of your life, creating and shaping a real, live person and helping them reach their potential. Real life is pretty messy, and as any artist will tell you, creating a work of art is never a pretty sight. But the end result of creating art or children makes the creative chaos so worth it. Besides, you can always tidy up once your little art project is asleep.”
Parents.com readers get an exclusive discount code for 15 percent off entire purchase from trafalgarssquare.etsy.com   Enter coupon code PARENTS at checkout to receive the discount.  The code expires April 21, 2014.
 
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Author of ‘Parentology’ Says A Dirty House is Healthier

You know better than anyone that one-size-fits-all parenting doesn’t work. While Cry It Out is a savior to one mom, co-sleeping works best for someone else. Author Dalton Conley, Ph.D., decided to use scientific methods to “study” these and other popular parenting ideas on his own children. (i.e., They kept their house dirty to see if germs were good or bad.) The result is his refreshingly honest, funny and relevant book called Parentology. We asked Dalton, a sociologist and professor at New York University, some questions:

KK: What is Parentology?
DC: It’s feedback parenting using the traditional scientific method but applying it to your kids. You read about a particular issue, something like, ‘Should I feed my kids their dinner after it fell on the floor?’ You inform yourself with the latest research and then try a little experiment. It’s less haphazard than straight trial and error.

KK: So should let kids eat food that fell on the floor?
DC: For a long time, it’s been thought that we want to minimize kids’ contact with germs. But research shows we’re not getting enough of them, and there’s been a recent increase in autoimmune diseases and inflammation. Kids with dirty floors have fewer of these issues. So we continue to have a very dirty house and not worry about it. So far, so good.

KK: So what is your verdict about Cry It Out versus co-sleeping?
DC: We came down on the side of the Sears family bed. In our case, our daughters had been in the NICU for five weeks. We felt, by the time we got her home, we wanted to maximize the level of physical, emotional and verbal contact with her. Her circumstance led us to make a choice that was against the recommendation of everyone else in our circle of family and friends. This illustrates the fact that even though we think of science as abstract rules, for each kid, what works is going to be different.

KK: What is the takeaway hypothesis of your book?
DC: We’ve heard a lot about Chinese parenting and French parenting. These are cultures without a lot of immigration with long histories and traditions. We’re an immigrant country. We reinvent things. We make up religions such as Mormonism and Unitarianism plus sports like baseball. I believe our haphazard parenting methods are fine. We’re not going to stop worrying about our kids ever, and it’s all just one big experiment.

Plus: Are you ready for another child?

Manners & Responsibility: Chores Kids Can (and Should) Do
Manners & Responsibility: Chores Kids Can (and Should) Do
Manners & Responsibility: Chores Kids Can (and Should) Do

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Jenny Bowen Revives Chinese Orphanages in ‘Wish You Happy Forever’

Did you see author and world-changer Jenny Bowen on Good Morning America this morning? If so, did you get weepy like I did? Oh my goodness. That was sweet. The story goes like this: Jenny Bowen, a former documentary filmmaker, adopted a little girl from China several years ago. The girl was emotionally void–a victim of neglect and abuse at her orphanage.

Jenny simply said she wanted to do something. So she created the organization Half the Sky to improve these facilities all over the Far Eastcountry. She went against Chinese bureaucrats, and she’s still hard at work. She emphasized that if we–you or me–see something in the world that bothers us, we can get out there and do something about it. Big or small, in one house or in one country.

Her new book, Wish You Happy Forever: What China’s Orphans Taught Me About Moving Mountains, chronicles her journey of adoption, rehabilitating her daughter and adopting another, and her current job to work inside the Chinese government to bring a loving and caring adult into the life of each orphan. This is a book to uplift you and reaffirm your faith in humanity. Pick it up!

 

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Sexually Abused Mom Gets Real in Her Memoir ‘On the Edge of Insanity’

On the Edge of Insanity by Valerie Smith is a deep memoir about a mother who was sexually abused and really struggles to raise her children. Read about her story in her own words, below. Note: Valerie Smith is a pseudonym–you’ll understand why. And read more here about how to protect your child from a predator.

“This book is a journey of myself. I was middle-aged single mother who had a mental breakdown which was brought on by the sexual abuse I suffered as a child. My children were 3 and 6 when all hell broke loose, and I believed that with therapy I would be able to help My family progress emotionally and all move on to a better life.

It did not happen that way–regression therapy took 19 years. By the time I was given a clean bill of health, my children were in their twenties.

Before therapy, I had a desire to sexually abuse my baby boy. It’s true. But I didn’t want that to happen. It took immense strength not to harm him. Looking back, it was the biggest hurdle I had to bear. Therapy helped me get through it and never touch him inappropriately.

During those years of treatment, I was put in solitary confinement three separate times. First for two weeks, then three weeks and then finally a stay of three months, starting with being thrown into a padded cell and a new course of medication, all in psychiatry units. I was diagnosed initially with schizophrenia and then as a psychotic depressive in remission. In addition to regression therapy, I had a course of a six-week sex abuse therapy, and then I came to terms with the fact that I had been sexually abused by my  father. I was always aware that my uncle and neighbor had sexually abused me, but it took longer to admit that my father did it to me, too. With this knowledge , my fight for survival intensified and, as my father was dead, I was unable to confront him.

Being raised in a large family, I longed for affection and emotional fortitude. I tried to discuss my findings with my family,  but on my older brother showed compassion.

Finally, after those years of struggling to care for my  children, I achieved mental fortitude, and my goal of becoming a good mother in every way.

If you’ve been abused, this is real. You need help with your darkest and most depressing thoughts. Ask someone. Find help. Reach out.

If you notice signs of sexual abuse in any child, speak up. Talk to someone, anyone. Most importantly, always go with gut feelings.

Let’s stop sexual abuse right now.”

 

 

 

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