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Thursday, April 3rd, 2014
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!
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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.
Wednesday, September 4th, 2013
I know most of the country has started school. But here on the East Coast, the time is the now (or even next week!). If you’re a parent of a child with special needs, a great new book just came out for you. Author Carolyn Dalgliesh wrote The Sensory Child Gets Organized: Proven Systems for Rigid, Anxious or Distracted Kids. She hopes her tips can make school–and life–a little easier and a lot more fun. Check out my Q&A with her below, including her top 5 tips for going back to school. Dalgliesh knows what she’s talking about–she’s got a sensory child of her own.
KK: How do you deﬁne a sensory child?
CD: In my book, The Sensory Child Gets Organized, I use the term “sensory” to deﬁne children who are rigid, anxious, or distracted as a result of autism, ADHD, anxiety, bipolar disorder or sensory processing disorder. Though there are a number of proﬁles and diagnoses for a “sensory” child, the core challenges are similar for many; attention problems, inﬂexibility, anxiety, social and emotional difﬁculties – all that make for overwhelmed kids (and parents!) as they navigate daily life. I believe in focusing on the challenging behavior or task and coming up with ways to support it.
KK: Why do parents of sensory child need this book?
CD: Sensory kids navigate the world through a different lens and parents need help creating physical environments and sensory organizing strategies that speak to their child. Early on, as I was learning how to support my own sensory child, I felt like there was a major gap between the essential clinical support we received and the practical solutions that we really needed to make life at home easier for our child and our whole family. My book gives parents the sensory organizing tools of structure, routines, and visual aids that can be used anywhere, anytime and for almost any situation. My main goal is to help parents, caregivers and teachers bring out the best in these innately talented kids by providing practical solutions for every day living.
KK: What are your top 5 tips for getting sensory kids prepared and organized for Back-to-School?
CD: For a sensory child, back-to-school isnʼt about a week or two but rather continuous supports over a couple of months. For the sensory child, I like to think of back-to-school as a three-month process that starts with supporting a new classroom with new routines, then moves to getting stuff home and back to school, and ﬁnally homework strategies. Initially, we want to focus on what might be the immediate challenges as our kids get back to school and start with these ﬁrst:
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When it comes to back-to-school, our ﬁrst priority will be supporting their experiences around new people, a new classroom and new routines they will encounter when school starts. (more…)
Wednesday, May 29th, 2013
When a preschool teacher told Kristine Barnett
that her autistic son would never read–so she shouldn’t bother teaching him–she pulled him out of class. Ever since then, she’s been completely devoted to Jacob. They found out that his IQ is higher than Einstein’s, and by age 9, he was working on an original theory in astrophysics that may put him in line for a Nobel Prize someday. Kristine’s book, The Spark: A Mother’s Journey of Nurturing Genius
is a testament to her love for and belief in her son who’s potential could’ve gone untapped. Today, Jacob is a teenager and taking graduate level classes. You might have seen him on YouTube
or TV. Keep on eye on this book–it’s even been optioned for a movie.
Below, Kristine talks about her extraordinary son and popular book.
KK: In three sentences, how would you describe what your book is about?
KB: The Spark is an inspirational memoir that narrates my journey with her remarkable child who was once locked in the silent world of autism and later, despite all odds, emerged to become one of the world’s youngest astrophysics researchers. Through love and perseverance, me and my son Jacob led an entire community of autistic children to achieve remarkable results that would surprise experts and help to redefine what the autism label means. Beyond this, the story points the way to unlocking the untapped potential or spark that perhaps lies deep within all of us!
KK: How old was your son when doctors told you he would never learn? How old was he when you knew differently?
KB: When Jacob was 3 years old, his special education teacher told us that he would never need to learn the alphabet. Against the advice of everyone including my own husband, I pulled him out of special ed and began to work with him on my own. Through play and typical childhood childhood experiences as well as focusing on what he could do, rather than his shortcomings, I began to see results. I had never given up on Jacob’s potential to learn although I knew he faced tremendous challenges. Sometimes it seemed like I was the only one who could see that he was working on something remarkable deep within his silent world. Within six months of taking Jacob out of special education preschool, he was in fact reading without any formal instruction! Later that year at a trip to a local planetarium, Jacob surprised us all by answering college level astronomy questions about the relationship between the mass of the moons of Mars and the gravitational pull of the planet!
KK: What advice do you have for parents of special needs children who are getting less than positive news from their doctors?
KB: Raising a special needs child is one of the hardest things a parent could ever imagine facing. In spite of the overwhelming diagnosis that I was given for Jacob, I never gave up hope. I refused to let myself focus merely on his challenges or to let any label define his potential. Do not forget to focus on your child’s strengths and to celebrate the things that they are drawn to and inspired by. These could be the very things that can lead them to reach the ultimate potential that they have inside of them.
KK: Can you tell us how old your son is now and a little bit about what he has accomplished?
KB: Jacob is now 14, and he is a research scientist in the field of quantum physics. He is the youngest person to ever be published in Physical Review A, a prestigious scientific journal. He takes graduate level classes in mathematics and physics, tutors undergraduate students and has expanded his research to multiple areas including chaotic laser physics, quantum friction and integrable systems. At age 12, Jacob made a YouTube video on calculus that went viral and had over 2 million views. It was seen in every country around the world. He was invited at 13 to New York to give a Tedxteen talk at the Scholastic Auditorium on Broadway that is now the eleventh most watched Tedx talk of all time. This was a remarkable achievement for a boy who was told he would never speak. Jacob has been on CBS News, 60 Minutes and on the Glenn Beck Show on Fox.
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Monday, April 22nd, 2013
Author Carrie Cariello is a mom of five, including one 8-year-old boy with autism. So others will understand autism more clearly, she recounts her wondrous and challenging journey in her new memoir What Color is Monday? How Autism Changed One Family for the Better. Thank you, Carrie, for the eye-opening guest post below:
“What color do you see for Monday?” my son Jack asked as I heaved a chicken into the oven.
“What?” I said distractedly, turning from the oven to slice some potatoes at the counter. It was late afternoon one day last fall, and I was preparing dinner and managing the demands of homework and tired toddlers. (One was in a tiara.)
“What color is Monday?” he asked again, his robotic voice rising ever so slightly in irritation.
“I don’t see Monday as a color. Do you?” I asked, finally tuning in to what he was talking about.
“Yes. All days are colors.”
All days are colors. On a seemingly ordinary day, Jack once again granted me the privilege to take a tiny peek inside his fascinating mind. Without preamble, he rattled off which color he associates with each day. And then, just as suddenly as the conversation began, he snapped his mind closed and moved on to something else entirely. I tried to probe further; why was Saturday red? Was the entire day red, or just the morning? “I told you. No more,” he answered in a clipped tone.
Later that winter, Riddle Brook Publishing asked me to write a book based on our life with an autistic child. I happily agreed, and throughout the spring and early summer I wrote, putting together words and sentences, essays and chapters, to describe our days with five children and autism. Some days the words came easily, other days I struggled to make sense of my world with Jack and transport him onto the page. Whenever I approached something that seemed like writer’s block, I reminded myself that my subject—my inspiration—was right in front of me at the dinner table every night. All I needed to do was watch and listen and learn from my son.
And then, like the pieces of a puzzle, the elements of the book came together. It describes our journey to Jack’s diagnosis, and all the funny and frustrating and sad times since the day we first heard the words your son has autism nearly seven years ago. It describes how a boy with a literal mind made peace with religion and accepted his first communion, and how our family of seven took our first vacation. It describes his obsessions with things like dates and cars, his fascination with shampoo and license plates.
Every couple of chapters, I included a letter to each of my children on their birthday, describing their likes and dislikes, their temperament, their appetite. Describing the way they’ve made room for autism and embraced their unusual brother.
Recently someone asked me, “Who is this book for?” And after considering the question for moment, I answered that originally it was for me, a way for me to creatively untangle the web of emotions and bewilderment and frustration autism often left me with at the end of a long day. But, as the project progressed, I realized it wasn’t just for me; it was for Jack and our family. And by the final round of edits, I decided it was for an even larger audience then that—it was for anyone and everyone who has ever been touched by autism.
I decided it was a way to put a face to the name of autism; the sweet face of a little blue-eyed boy who loves music and marshmallows. As I read through the book one final time, making last-minute changes and edits, I realized the book puts a voice to the message I’ve been saying every single day since Jack was diagnosed: that beneath the rigidity and anxiety and stimming there is a charming, intelligent, witty child peeking out.
It’s about how Jack brings out the best in my, my husband, and my children every single day.
Throughout the summer I struggled to title the book, tossing around ideas like Life with Autism and Loving Autism. For a while I decided to use the word snowflake in the name, because that’s often the image that comes to my mind when I think of Jack and autism; a beautiful, fragile snowflake that is always changing, always in motion. But one afternoon in late August I was driving the kids to the town pool, and Jack said, “Look, the sky is so blue.” And as I peered up through the windshield at the rich blue summer sky, I thought again of our conversation the previous fall, when he talked about the colors of the week.
For a short time I thought about calling the book Thursday is Purple, but then Jack off-handedly remarked Thursday is sometimes green. (Come on, Jack-a-boo. I’m trying to write a book about you here. For real.)
And so, it became What Color is Monday? How autism changed one family for the better.
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Tuesday, January 8th, 2013
One of the most important parenting books of last year was Andrew Solomon’s Far From the Tree. I’m not usually a cryer–my eyes stayed dry during all of Les Miserables–but this book made me weep. The sections on autism and schizophrenia are particularly insightful, surprising and heartbreaking. Far from the Tree goes into intense detail about what it’s like to parent children who are out of the ordinary. What would you do if you had a child who was deaf, autistic, schizophrenic, brilliant or became a murderer? Your whole identity as a parent will be altered just by pondering such big questions.
Don’t have time to read Solomon’s 700-page book? (It took me 20 hours.) He will be featured on Katie Couric’s show, Katie, this afternoon. He is bringing along some of the parents he interviewed. I anxiously read about these achingly real and relatable people, and I want to see them speak about their children–and how they’ve tried to improve their lives–on Katie’s show. Click this link to watch the teaser for the episode.
Check out Katie today. It airs at 3 p.m. EST on ABC on the East Coast. Are you as moved by the stories in Far From the Tree as I am?
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Andrew Solomon, autism, child murderer, deaf, down syndrom, Far From the Tree, identity, Katie, Katie Couric, schizophrenia | Categories:
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