I Need to Remember this: “You Will Miss Your Mother…”

Kate Di Camillo’s one of my favorite writers ever. I was lucky enough to meet her and interview her several years ago, and I still get excited when she releases a new book (like Raymie Nightingale, coming soon, hooray!).

I also follow her on Facebook, and her way with words translates there too. Today, she really struck a chord, and I post this here because it’s beautiful. Because I want to remember it long after my Facebook feed moves on. Because my dear grandmother– my mother’s mother-is having cancer removed this week. Because my own mother and I cried on the phone tonight. Because I don’t get to have lunch with my mother nearly as often as I like (every 3 years is not often enough). Because, someday, I will miss my mother. And my boys will miss me. And it’s a beautiful reminder of life and death and it makes me cry every. single. time. I. read. it.

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Cannon Beach Wrapped in a Cloud

We went to the beach today. Just took off after A’s work. Drove over the mountain. Drank coffee. Stepped away from the inertia of the every day. It was 80 in our town when we left, the temperature dropped as we passed ancient trees, their branches covered in carpets of moss. I’m not sure how I feel about Oregon, but the trees are actually quite lovely here, to paraphrase the Dread Pirate Roberts.

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Coming up the beach, we entered a cloud. It was like another place. A dream country. Like walking along the ley lines in Maggie Steifvater’s The Raven Boys (have you read this book? You should. Immediately). I had packed shorts, sunscreen, a frisbee. We bundled up in sweatshirts and hats, ran to the sand, and dug our toes in deep. L rolled in the sand, giggling. photo 4

E chased fat, gray gulls. photo 3

I took pictures and smiled at my husband, calling out, “This is fairly perfect!” “What?” he asked. The wind had taken my words and sent them cartwheeling down the beach. I just shook my head, smiling, and chased after L, who wanted nothing more than to plunge into the shivery, gull-filled high-tide pool at the edge of the sand. It was a nearly perfect moment of just being together. photo 2



Kids with Autism Have a LOT to Say!

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I’m worn out from all the autism-is-awful posts I’m seeing lately (which I won’t even link to here because they’re too damn crushing). But you know the kind. So, here’s my reply to them all–

This blog was originally published at Parents.com

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Autism is often cast in a tragic light in the media. And although it’s good to be open about the challenges our kids on the spectrum face, it’s much more productive to focus on stories of kids with ASD expressing themselves and using their voices to create change.

Recently, I ran across two stories that show exactly that, and I want to share them with you as a counterpoint to all the grim autism news that seems to fill our Facebook feeds. Read these stories and hope. Read them and let the tears of wonder run down your face. Read them and know that our kids desperately want to express themselves and that our energy is best spent finding ways to foster communication and connection.

Meet Mollie-Raine, a 7-year-old with autism from Ireland, who penned a friend wish-list that touched the world. In the list, pictured above, Molly wrote:

“Wanted

A friend

Someone who…..

– anbrstands [understands] me

– nos I have atesm [knows I have autism]

– smiles all the time

– cees me comgin wen Im sad [sees me coming when I’m sad]”

I think we all would love these qualities in a friend, and Molly’s wish list speaks to how desperately she and other children on the spectrum want connection with the world and people around them (which flies in the face of many theories about autism).

Enter Emma (18), Ben (19), and Huan (19), three teens on the autism spectrum, who have been doing RPM with speech-language pathologist Elizabeth Vosseller for the past two years. In that time, they’ve really been able to express themselves, and along with a few other friends, they wrote and starred in the short film, “The Power of Words.” Watch it here:

It’s incredible, and it brings tears of joy to my eyes every time I see it!

All of these kids attend public schools, where they have no support for RPM and/or are in autism-only classrooms and are not receiving academic instruction. Earlier this month, Emma, Ben, and Haun used RPM to ask the Arlington County Special Education Advisory Committee for a meaningful, high-quality education. Check out their impressive self-advocacy in action:

They said:

MY EDUCATION IS IMPORTANT TO ME. PLEASE GIVE ME A CHANCE TO LEARN (Ben)

STOP TREATING ME LIKE I CAN’T LEARN. (Emma)

I ECHO WHAT MY FRIENDS SAID. I AM SMART AND SO ARE THEY. PLEASE RESPECT US AND GIVE US A MEANINGFUL EDUCATION. THANK YOU. (Huan)”

I love these stories, and they underscore the fact that autism is fundamentally a communication disorder. Although it’s a disorder that can feel like, “A tornado ripping through [a child’s] brain,” to quote James, one of the teens who wrote for “The Power of Words”—and it often looks like a tornado’s ripped through my house, thanks to my energetic, curious son with autism—too often we just see or hear about the tornado, not the child at the center of the storm. But those kids have a lot to say, and it’s time for us to listen.

3 Haikus for Fall

Fall is the time for haikus in our house…Adam and I are trying to send each other one a day…here are some recent ones I wrote, inspired by photos I took, the way the wind pulls at the trees…

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Shadows, leaves,sunlight,
Weave labyrinths in the sky
The way is twisted.

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Sunlight grips my hair,
Pulling me away from I,
We are exiled stars.

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Today the air sings.
Green leaves rattling their deaths.
Autumn creeps closer.

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15 Things I Tell My Friends When Their Kids Get an Autism Diagnosis

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This blog post was originally published at Parents.com

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Autism diagnoses are on the rise, and so I wasn’t surprised when two of my friends recently approached me with questions about their sons’ looming diagnosis. I’ve had so many people—other moms, dads, and professionals—help me better understand how to parent Liam, my 7-year-old non-verbal child with autism, over the last four years that I was happy to share what I’ve learned. I wish someone had told me these things on the day my son was labeled autistic, and I hope they help other parents facing a similar moment.

I’m here to listen. Your friends and family want to hear you talk about autism. We want to know about your fears, hopes, and what keeps you up at night. Talk to us. Reach out. We are here to hold you and we want to help you.

It’s hard, but it will be ok. Getting an autism diagnosis can be hard,but as a fellow autism mama pointed out to me: your child is the same as he was before the diagnosis. The diagnosis is just a tool to help you better understand the way his brain works.

You must be an advocate. Autism makes advocates out of most parents. I’ve met moms who’ve set up community advocacy groups, who’ve waged legal battles, and whose writing raises awareness. Be prepared for this role of advocate. Be ready to ask questions, direct programming, say no to therapies that your gut tells you aren’t working, and be proactive.

Educate yourself about government services. There is a lot of help out there, but you have to find it. Research government services and see what your state offers. In Wisconsin, where my son got his diagnosis, there was an Early Intervention Waiver program that funded intensive therapy for three years. But the waiting list for the program was over a year long when we signed up, so it’s important to get on these lists as soon as possible.

Be bold, be brave, be patient. One of the biggest things I sense from friends is fear or shame about taking their children out in public. I remember this—my son’s behavior was erratic, and I found the “helpful” advice of strangers frustrating, condescending, or both. I decided, however, that I had to take him into the world, come what may. And so we went places like the art museum, the grocery store, and coffee shops. It wasn’t always smooth, but in time, Liam learned how to behave in these community settings and I could take him even more places.

Breathe. When it gets too overwhelming, just breathe. It sounds simple. It sounds silly. But it helps. Taking ten deep breaths—even when my kids are having tantrums, even when I’ve been on the phone with insurance companies for hours, and especially when life makes me want to hide under the covers—can be immensely helpful.

Find ways to make the daily challenges more livable. Like many kids on the spectrum, my son has erratic sleep patterns and many other daily living challenges. One of the first things I tell my friends is to try to make daily living as easy as possible. I share sleep tips and we brainstorm things like how to rearrange a house or schedules, just to make life a bit easier.

Support your child’s interests. Many adults and kids with autism have written about why they like to watch the same TV show over and over or perform the same action repeatedly. It’s for comfort. It’s predictable, and it’s something that all of them encourage parents to support. Whatever it is that your child likes to do, let her do it (as long it doesn’t hurt anyone, of course).

Understand that behavior is communication. If a child can’t talk, his actions are telling you what he wants to say. Watch, “listen,” and try to understand. Also be aware that sensory issues affect many children with autism, and their behavior may relate to sensory overstimulation.

Communication is key. Autism is primarily a communication disorder, and much of my son’s problem behavior and frustration was alleviated once we got more robust communication methods in place. I recommend the Rapid Prompting Method (RPM) and the video “A Mother’s Courage” to help my friends start thinking about communication options.

Be wary of “cures” and “recovery.” One of the first books I read about autism was a “recovery narrative.” It was well-wrttien, but what it told me was that if I just worked hard enough, poured enough money into chasing a cure, and found the right combo of supplements and therapies, my son would get over his autism. It’s a destructive mindset to have, and it caused me and my child heaps of stress. Autism is a neurology, it’s a different way the brain is wired. You can’t recover from neurology, and a more productive focus for everyone is helping your child become his or her best self.

Seek community online and locally. Find groups in your area, but also look online. I always send my friends to Jess Wilson’s fantastic blog, “Diary of a Mom”. Her community is huge, and I recommend “Welcome to the Club” as a great starter post. There are also Autism Societies in most states, and looking them up can help connect you with other parents, support groups, and events that will be fun for you and your kids.

Learn to speak the language. There are a lot of terms that get thrown around during meetings with autism professionals. Luckily, there are helpful glossaries out there that can help you understand the vocabulary of autism treatment.

Don’t get bogged down in the debates in the autism community. There are a lot of camps in the autism community. Some people want cures, other blame vaccines, and others demonize autism. Autism self-advocates are changing perceptions of the disorder through their advocacy. People will tell you to cut gluten, try cod liver oil, and the fights can grow nasty. I align with certain views, and I try to live those. But I tell my friends to keep the focus on their child as they wade through all the extra noise in the autism community. I also always recommend that parents new to a diagnosis read what writers with autism are saying as a way to navigate some of this debate.

Never lose hope! Things will change. Your child will grow. Keep an open mind and heart. Hope for the future, live in the present. I know that hope sometimes takes practice, as one my friends says about parenting her child with autism and cerebral palsy, but it’s an exercise that’s well worth it.

Image via Shutterstock

Pregnancy Timing and Autism Risk, My Thoughts on a New Study

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This post originally appeared on Parents.com

New autism studies come out all the time—and I cover a lot of them here when they seem useful to parents of a child on the spectrum—but sometimes I come across a study that doesn’t add much to the conversation and seems only to cause more confusion or fear. Last week, a new study was published in Pediatrics that claims a younger sibling has a higher risk of developing autism if parents “waited too few or two many years between pregnancies.”

While the researchers may have found some correlations between birth intervals and incidences of autism in their large sample group, my real question here is: Who cares? What good does this type of study actually do for kids or adults with autism, parents of a child with autism, or people who are considering getting pregnant again? Autism is a different neurology that’s tied to genetics, and this sort of study just makes anxious parents sweat even more. It adds to the fearmongering surrounding a naturally occurring condition that’s been around for centuries (if not longer) and it makes the idea of having a child with autism seem like a worst-case scenario.

It’s not the worst-case scenario. My son, Liam, is a non-verbal 7-year-old with autism. He is also a joyful, unique boy who—yes—faces challenges, but who also has many gifts.

So, while you may have seen this study, I have to say this: Don’t worry too much about it. If you have a child with autism, like I do, sure there’s a chance your other children could have autism. I see traits from all over the spectrum in both my boys, though only one of them has an official diagnosis. But it’s OK.

As Steve Silberman, author of my new favorite book Neurotribesargues, autism is “a valuable part of humanity’s genetic legacy.” Or, to put it another way: “just because a computer is not running Windows doesn’t mean that it’s broken.”

Image via Shutterstock

 

Rethinking Autism, One Day at a Time

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This blog post was originally published at Parents.com

 

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Autism—the official diagnosis for my 7-year-old son, Liam—has taught me a lot, but no lesson has resonated more than this simple and crucially important one: behavior is communication. My boy is non-verbal, smart, kind, curious, and affectionate. He has interests but very few ways to communicate his likes and dislikes beyond making noises, pulling me places, and a limited use of signs. We are working on using theRapid Prompting Method (RPM) with him, but he still often gets overwhelmed and frustrated by his inability to communicate. Add a host of sensory issues and GI pain to the mix, and it’s no surprise that he has meltdowns. That he acts out. That he sometimes bites or pinches when feeling really frustrated. I’d do the same thing in his shoes, but I struggle sometimes with how to best parent him when he’s having a rough time.

Obviously, it’s not okay for him to bite me so hard he draws blood or to pinch his brother until he leaves a mark—these are dangerous, unacceptable behaviors for anyone—but I often wonder is it better to try to manage these behaviors through forced compliance or to figure out the causes of his distress and address that?

Consider one recent morning. As we were getting ready to go the park, Liam pinched his brother, started screaming, and then went on to bang his head on the floor and try to bite himself. I pulled him away from his brother, sent him to his room to calm down, and then a few minutes later, went in to talk with him. Eyes red, tears still streaming down his face, he babbled at me, trying to communicate what was wrong. I grabbed the letter board to try to ask him, but he didn’t spell anything coherent. Throughout all of this, the downstairs neighbors’ puppy barked. And barked. And barked.

It was really annoying, and I’m not even sensitive to sounds. But my son is. And the dog’s barking coincided with the timing of his meltdown. All at once, I had an “ah-ha!” moment and realized the meltdown was triggered by sensory stress. Liam wasn’t trying to act out, but his nerves were fried by waiting on me to get ready and by the barking dog.

This reminded me of an excerpt I read recently from the new book Uniquely Human: A Different Way of Seeing Autism. In the excerpt, author Barry Prizant makes this point about methods of caregiving that just seek to manage behaviors, rather trying to understand the underlying causes for a behavior:

“This way of understanding and supporting people with autism is sorely lacking. It treats the person as a problem to be solved rather than an individual to be understood. It fails to show respect for the individual and ignores that person’s perspective and experience. It neglects the importance of listening, paying close attention to what the person is trying to tell us, whether through speech or patterns of behavior.

People with autism, primarily due to underlying neurology (the way the brain’s wiring works), are unusually vulnerable to everyday emotional and physiological challenges. So they experience more feelings of discomfort, anxiety, and confusion than others. They also have more difficulty learning how to cope with these feelings and challenges.”

This insight is not new—autism self-advocates have been writing along these lines for years—but it’s a good reminder when things get rough in the trenches of parenting. Liam’s not a problem to be solved. He’s a child with a unique perspective on the world and sometimes his anxiety, confusion, and discomfort make him act out. My job as his mom in these moments is to be patient, listen, show empathy, and remember always that my child is not trying to give me a hard time, he’s having a hard time.

Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton

 

5 Reasons to Read Neurotribes, the Autism Book Everyone’s Talking About

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This blog post was originally published on Parents.com.

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Autism Acceptance grows every time a non-verbal child finds his voice and can tell us his thoughts and feelings. It shines through every time a parent or caregiver understands that autism is something to work with, not try to cure. It’s there when we listen to Autism Self-Advocates, and it’s there every time someone publishes a book that encourages the world to embrace neurodiversity.

Steve Silberman‘s NeuroTribes: The Legacy of Autism and The Future of Neurodiversity is exactly that kind of book. It’s the book I wish I’d read first when my son Liam, a non-verbal 7-year-old with autism who has many challenges, first got his diagnosis 4 years ago. And it’s the book that I think should be required reading for every parent, teacher, therapist, and person who wants to know more about autism. Here’s why:

It offers a wide-lens view of the history of autism.

Too often it’s said that autism is a 21st-century epidemic and that it’s a fairly new condition. Silberman’s book shows, in exquisite detail, how wrong this assumption is. Using narrative, he paints portraits of many famous people throughout history who’ve been on the spectrum, and he also examines many of the pivotal clinicians who helped shape the way we diagnosis, think about, and view autism. All of this history fascinated me, and it helped me see my son as much more historically situated than many other accounts I’ve read.

It tells stories about families who’ve struggled through a battery of treatments and arrived at acceptance.

I started reading this book in the wee hours of the morning as my son bounced and chattered nearby. I was mentally and physically exhausted, but as I read about one family’s life with a child much like my son—from diagnosis, to worry over vaccines, through shady biomedical interventions, and about daily struggles, adaptations, and joys—I felt connected to and strengthened by their journey.

It details how people with autism have been mistreated and marginalized, and suggests how that colors of our views of autism today.

I’m not going to lie—there are parts of this book that are very, very hard to read. I wept as I read about the Nazi’s deliberate, scientific extermination of over 200,000 people with disabilities. All I could think, as I read through my tears, was: “that could have been my child.” And the thought took my breath away. And it also made me realize how much of the rhetoric used to justify such crimes lingers still in things like calling children with autism a “burden” or saying the disorder is “stealing our children.” This section of the book made me reaffirm my commitment to giving my son the best life possible, to seeing him as fully human, and to treating him always with dignity and respect.

It sifts through the many camps in the autism community and argues for neurodiversity.

There’s a lot of anger in the autism community and a lot of disagreement about how to approach the disorder, how to spend funds (cure or care?), and many other elements. It can be confusing, andNeurotribes does a good job making sense of the many conversations about autism. Silberman also firmly agrees (as do I) that we should be listening to autistic voices and promoting autism as difference, not deficit, which is the heart of embracing neurodiversity.

It offers hope.

Parenting a child with autism is hard. I know—my son struggles daily with problem behaviors caused by his inability to communicate, he doesn’t sleep much, and sometimes it’s nearly impossible to see the gifts his unique neurology bring through all of his challenges. But the gifts are there. And reading a book likeNeurotribes and learning more about autistic adults like Temple Grandin or Ari Ne’eman reminds me to hope. To believe in my son. To believe in his future. To love him and support him for exactly who he is. And to keep working to create a world where he can have the support he needs and the respect he deserves throughout his life.

Jamie Pacton lives near Portland, Oregon, where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton