Category Archives: Autism

My Apology to Ron Howard, Jason Katims, and Everyone on “Parenthood”

Parenthood-Family-tree-infographic6

Dear Ron, Jason, all the writers and every member of the cast of “Parenthood”:

I’m sorry.

I owe all of you an apology.

A big one.

Back when your new show “Parenthood” premiered (how could that have been six seasons ago? seems like forever, yet not long enough) I underestimated you.

I mean, I seriously underestimated you.

I wrote in this post that I thought you were going to be yet another copycat family drama that we’d seen countless times before.

They’re all similarly formulaic. A white, upper-middle class family where everyone is more good-looking and put together than the next person. A matriarch and old-fashioned patriarch intact …a long-brewing kettle of DNA dysfunction. A family where you need a family tree cheat sheet to figure who is married to or divorced from who and who has slept with who and who wants to sleep with who. A home (usually in California) ripped from the pages of Architectural Digest where everyone eats gourmet meals together on gorgeous plates and secrets are spilled while cleaning up the mess. Tonight, the Bravermans join the mix, and they fit the bill perfectly. They are, according to the script above, right out of Central Casting.

What really irked me – and what made me skeptical, and even a little bit angry – was the inclusion of the Asperger’s storyline. It felt gratuitous. Pandering. A cheap shot. It certainly wasn’t how I felt like relaxing after work, which at that time, included a 3 hour commute every day.

Then yesterday, I heard about the Asperger’s storyline in Parenthood and thought – CUT! No freakin’ way. NO FREAKIN’ WAY I am spending an hour watching this. If I want to see a drama involving Asperger’s, I’ll watch the drama right here in my family room. Besides, I was convinced there’s no freakin’ way they will even come close to getting it. Not to mention, there’s another unmentionable aspect of this show that slams pretty close to home, so … yeah. No thank you.

I wanted no part of this show.

Of course I watched anyway. All in the name of the blog, mind you. Either way I would probably get a post out of it.

Which I did.

Max Burkholder is brilliant as Max Braverman, who in this first episode, is considered by school officials to have Asperger’s Syndrome. The frustrations over what is for others a simple fine-motor task in the classroom leading to a meltdown and biting incident (been there, done that), the brilliantly portrayed breakdown by Peter Krause and Monica Potter of the parents when the fear and uncertainty of the diagnosis sinks in while life goes on around them (that scene was particularly tough for me to watch – did that bring home the moment of diagnosis for anyone else?), the wearing the pirate costume to school each day, the missed social cues.

I thought this premiere episode had to be a fluke. How could one person’s experience get translated accurately onto the screen in such a way that could be universally felt by so many, including those who aren’t on this particular parenting journey? How were you going to keep this up, week after week after week?

That’s what I doubted. I didn’t think you could do it  – and I certainly didn’t think it could be done well. I fully expected to hate “Parenthood,” to write bitchy ranty blog posts about how you got some aspect of Asperger’s oh-so-woefully wrong. Because you didn’t know me and the Asperger’s world I knew. You didn’t live in my house.

At least not yet.

Sure, I knew that Jason had personal experience as a parent of a child with Asperger’s but as those of us in this community are fond of saying, if you’ve met one person with autism, you’ve met one person with autism.

It’s too early, I think, to say if “Parenthood” will become a groundbreaking show in this area – much as “St. Elsewhere” (my all-time favorite show, ever) was progressive in its day by having a child with autism as a central character – but I think “Parenthood” is off to a very good start. It will be interesting to see how this unfolds.

Because make no mistake, I will most definitely be watching.

We’re a bunch of mama bears, those of us who have kids on the autism spectrum. Just look at all the crap you’ve gotten for Kristina’s frequent use of “buddy” as a term of endearment with Max, and how much their parenting philosophy is often criticized on the comment boards. We’re used to that from our own real-life families – people who think all we need to do is spank our kids a little more often or feed them a little less sugar and their issues will miraculously disappear.

So perhaps that was why, six seasons ago, I felt a little protective of Max Braverman – and of Adam and Kristina, too. I wanted you to do right by him, by them.

Maybe it sounds dramatic, but thinking back to 2010, perhaps I was at a point where I needed you to do right by all of us. As in, the entire autism community.

An unfair, unspoken burden, perhaps. But you know what?

You did.

For six seasons, you did exactly that and succeeded. You were our voice to others who needed to see the small big moments of our lives, how we feel when we’re overwhelmed for our kid’s future or when we don’t know how to tell a sibling what she needs to hear.

You transformed how people view people with autism. You shattered age-old stereotypes.

I didn’t trust that you could do that.

So, I’m sorry that I doubted all of you but so glad that I was wrong.

Which leaves just one more thing left to say.

Thank you.

UPDATED TO ADD:  And an additional thank you to BlogHer for featuring a version of this post on January 30. Click here to read “I Was Wrong About the Asperger’s Storyline in Parenthood.”

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State of the Blog: My Top 10 Most Popular Blog Posts of 2014

Delaware State Fair 2010

In some ways, 2014 was not my best year of blogging.

In other ways, it was excellent.

The not-so-good was in the quantity of posts.  I ended the year with 137 new posts. By my standards (admittedly, pretty high to begin with), that’s pathetic. How do you call yourself a blogger when you ONLY BLOG FOR A THIRD OF THE DAMN YEAR?!

But you know what? We’re not going to dwell on that. Another year is here and there’s always room for improvement, right?

Instead, I want to focus on the 10 most popular posts in 2014 here on the blog. By most popular, I’m talking number of views.

Unless you happen to be a big-name blogger with thousands of followers and a book deal (or three), every blogger wonders if anybody is out there reading. Even when you check your stats and see numbers that indicate that someone, somewhere in the world is paying attention, there’s still a lingering doubt that wonders if what you’re saying in this space makes a difference.

I’m not a big name blogger and I certainly don’t have a book deal (yet), but I know this: I’m incredibly proud of the 10 blog posts I wrote that received the most views in the past year. thanks to all of you. (Some of these were written pre-2014, but for various reasons, experienced a bit of increased traction over the past 12 months.

Links take you to the actual post.

10. The Sunday Salon: Yet Another Best Books of 2014 List
I love lists. I especially love lists that feature books. So, when everyone was sharing every possible incarnation of best books lists several weeks before the end of the year, I had to jump into the fray by offering up my list of “best books I read in 2014 that were published in 2014.” Apparently, other people like lists of books as much as I do. (That’s good because I have more such lists from 2014 in the works.)

9. Book Review: My Beef with Meat, by Rip Esselstyn
A post from 2013 that continues to get a decent amount of traffic. I’m not sure if this is linked someplace, but it resonates with people for some reason.  

8. Book Review: The Returned, by Jason Mott
I’m guessing that this review got some attention because of the TV show that it is based on. Of all the books I’ve reviewed, it was just okay … not one of my favorites.

Seinfeld - show

7. Punch Lines: On Jerry Seinfeld and Autism
When comedian Jerry Seinfeld mentioned in a November 2014 interview with Brian Williams that he thought he might be on the autism spectrum, several people saw Mr. Seinfeld’s statement as less than … what? Less than genuine? Less than heartfelt? In the ensuing backlash, I wrote, “If we truly believe that there isn’t one autism, then there’s no room for throwing punch lines when one of our own is vulnerable.  We need to truly reflect on what the meaning of “not one autism” means and we need to truly embrace the spectrum for what it is – as a place where we all need to co-exist together.  This isn’t a battle of who has the more difficult autism – because we are all fighting difficult battles.  And through it all, there is too much at stake for us, for our kids, for our friends and our loved ones.”

Kristin text

Text message Kristin Mitchell sent to her boyfriend, who was later charged with killing her. Photo credit: The Kristin Mitchell Foundation, www.kristinskrusade.org

 

6. forever 21: remembering kristin
I never met Kristin Mitchell, yet her murder at the hands of her boyfriend has profoundly affected me in a way I can’t quite put into words. I am humbled to use this space to remember her with this post (which has been repeated here several times) and to honor her memory however I can.

5. Book Review: Sea Creatures, by Susanna Daniel
My most popular book review, one that was written for TLC Book Tours in August 2013 but continued to get a lot of traffic this year. 

Philadelphia Flower Show

4. For Sonya
Probably my most controversial post, but one that I don’t regret publishing.  This case brings out the nasty in people in a way I never imagined.

3. #SaveDallas and a Piece of Our Childhoods
I was pretty active on Twitter during the six weeks after “Dallas” was cancelled by TNT and fans were trying to save this iconic show. Unfortunately, our effort wasn’t successful but I still think it was worth it.

Daffodils in snow 4

2. On National Adoption Day, Baby G. Still Waits
I am beyond humbled that this post is #2. Thank you for caring so much about Baby G. As we go into Year 4 of this ordeal, her story and that of my friends becomes even more heartbreaking and maddening. I hope and pray that 2015 is the year they are reunited as a family … because as we turn the calendar to another year without a resolution in this case, they are still waiting. (A disappointing update on this is that the ACLU of Wisconsin declined to take the case.)

And the most popular post of 2014?

1. Weekend Cooking: Hits and Misses with ALDIs LiveGFree Products
Seriously, I should send ALDI an invoice for this one because this has been my #1 top-ranked post since I hit publish on it back in May 2014. I even had the guy who worked on the LiveGFree packaging email me! For real. This has to be on some website someplace (I can’t figure out where) but it is has staying power. Who knew?

As I typically do at this time of year, I’ve been reflecting on the blog and my writing and what I want I do here. I have some thoughts and goals, but would like to hear from you. What posts resonate with you most? Do you most enjoy the book reviews? The food posts? The advocacy posts, such as the ones about Kristin and G.? What do you want to see more of in 2015?

Wishing you and yours a very happy, healthy and safe New Year!

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Punch Lines: On Jerry Seinfeld and Autism

Seinfeld - show

Welcome to the club.

That was my first reaction on Friday, upon reading news reports of Jerry Seinfeld’s comments that he believes “on a very drawn-out scale, [he thinks he is] on the spectrum.”

“Basic social engagement is really a struggle,” Mr. Seinfeld said, adding that he is “very literal” and has difficulty “paying attention to the right things.”

Turns out, those personal admissions might not be enough for some people to accept one of the world’s best-known and most-popular comedians into the autism club.

There have been no shortage of blog posts and commentary (some downright cruel) taking issue with Mr. Seinfeld’s revelations.  Over the weekend, I spent some time reading a lot of perspectives on this subject and (despite knowing better) too many online comments. And after seeing the backlash on social media, I wouldn’t blame Mr. Seinfeld if he never said another word about autism – his own or anyone else’s – ever again.

Which, in my view, would be a huge loss for so many people.

People like my son, who despite our best efforts to boost his self-esteem and encourage his talents, could benefit from more real-life, successful examples of living people with autism. (Sure, the likes of Einstein and Mozart are impressive, but to a kid who aspires to be a reality TV show host, Jerry Seinfeld is more relevant.)

Or, people like my friend Rich [name changed] who at 56 is giving serious consideration to those who have told him he may be on the autism spectrum. “But after reading what’s being said about Seinfeld,” Rich says, “I’m pretty sure it would just make me feel even more like I don’t belong anywhere.”

He’s referring to the backlash that has ensued since Mr. Seinfeld’s interview with Brian Williams. Because he’s a comedian, some feel as if Jerry Seinfeld was somehow minimizing the very real aspects of autism and self-diagnosing himself with a condition that is best left to the professionals.

I don’t see it that way. What I saw from Jerry Seinfeld was a candid statement from someone who felt comfortable disclosing something that he has more than likely pondered for some time.  Mr. Seinfeld is clearly familiar with and identifies with some of the traits of people on the autism spectrum. Obviously I don’t know the guy, but I’d imagine this isn’t the first such conversation he’s had. His comments were honest, reflective and thoughtful – not mean-spirited or belittling, as others have insinuated.

The comment that I’m concerned about is the one that’s not going to make headlines.

“I’m pretty sure it would just make me feel even more like I don’t belong anywhere.”

That’s what I keep coming back to.  My friend Rich and all the others like him who wonder what kind of response he’ll get if he mentions his own struggles with social interactions and tendency to take things literally.

People have said Seinfeld should get himself to a doctor and get a proper diagnosis.

I’m no expert on Seinfeld’s medical situation – or my friend’s, for that matter – but when you’re 56 years old in this healthcare day and age and you think you may be autistic, I’m pretty certain seeking medical attention is easier said than done.  Where do you go?  And what does such a diagnosis get you at this stage in life, anyway? Legitimization in the eyes of the autism community?

If that’s what we’re after, I think that’s a dangerous path. It’s sure as hell not one I’m interested in walking down.

But that’s what we’re asking of Jerry Seinfeld, isn’t it?  To prove it before we accept him as one of us, as a member of this club?

Aren’t we better than this?  Don’t we want to be better than this?

Perhaps we should consider the possibility that Jerry Seinfeld thought there truly was nothing wrong with a casual, yeah-you-know-I-think-I-might-kind-of-maybe-sort-of-have autism approach. Perhaps its how he has coped all these years.

Tears of a clown and all that.

Perhaps it is the only way he knew how to tell us what he has wanted to tell us for so many years.

And who are we to judge? If we truly believe that there isn’t one autism, then there’s no room for throwing punch lines when one of our own is vulnerable.  We need to truly reflect on what the meaning of “not one autism” means and we need to truly embrace the spectrum for what it is – as a place where we all need to co-exist together.  This isn’t a battle of who has the more difficult autism – because we are all fighting difficult battles.  And through it all, there is too much at stake for us, for our kids, for our friends and our loved ones.

All of them need the likes of Jerry Seinfeld, whether they know it or not.

And we owe it to them to accept him into this club.

 

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giving up the ghost

Mom-Mom's Halloween Party (3)

“In one aspect, yes, I believe in ghosts, but we create them. We haunt ourselves.”
~ Laurie Halse Anderson

Moreso than any other, this time of year supercharges my nostalgia meter into overdrive. It’s a combination of reasons: lots of holidays jam-packed into a few weeks, the kids’ birthdays, the anniversary of The Husband’s cancer diagnosis. 

Even without the obligatory #Throwback Thursday Facebook photos, I still remember the kids’ first Halloween vividly – not for its Norman Rockwell qualities, but because it was something more befitting Norman Bates. Halloween 2002 was a nightmare of preparing and feeding 11-month old twins their dinner and cleaning up two food-encrusted high chairs (no small feat, that); a husband coming home from a demanding job; visits from doting grandparents with cameras in hand to document the occasion; neighborhood kids ringing the doorbell, and squeezing two squirmy kids into too-small costumes which, being a one-income family in those days, I had frugally borrowed from a friend.

All of this was a hoax, of course. It was just one big photo opportunity. There was no way we were going trick-or-treating.

We wouldn’t go trick-or-treating for years.

*
Like that first October 31, last night was strange because of what it wasn’t.

At 12, my boy suddenly had no interest in Halloween. No costume, no trick-or-treating, nothing.

The idea of candy, on the other hand, now that was a different issue. Despite getting a stellar checkup from the dentist last week, that he was quite interested in. Since The Girl went trick-or-treating with a friend, my little Mr. Wonderful brokered a Shark Tank worthy deal where he acquired a percentage of her candy.

“I think I’d just rather stay home,” he announced, very matter-of-fact.

He wasn’t upset. Nothing was wrong, he insisted. He just … was done with the whole thing.

That’s it? I wanted to say. After we worked so hard to get here? 

A part of me felt cheated.

*
We hung out at home last night, seemingly no different than any other ordinary Friday evening, despite The Girl being out with a friend. We ordered our regular pizza, we watched Shark Tank, we puttered online.

And my seasonal wave of nostalgia threatened to overtake me as I scrolled through Facebooked photos of costumed kids, their doppelgangers appearing at my door almost instantaneously, smiling and chanting trick-or-treat, politely saying thank you as I handed them a bag of chips.

There were a few good years when that was us.

When all the best laid plans worked.

When my boy decided he no longer needed to ask every neighbor their birthday and then record it (along with their address) on a notepad, as if he was impersonating a census-taker. When he didn’t need the social stories to ease the transitions, to explain that we weren’t going to be staying at every house for an extended visit.  When we didn’t need to only visit houses where people “would understand the situation.” When we didn’t need to have a stash of gluten-free casein-free treats when he got frustrated at not being able to have something everyone else could eat.

Halloween was a nightmare until one year it wasn’t, and it was added to the ever-growing list of Things Our Boy Could Do.

*
When one kid decides he doesn’t feel like going trick-or-treating anymore, and the other kid is out with her best friend.
And you’re left holding the damn bag of your life, wondering where the years in between disappeared to.
– my Facebook status, 10/31/2014

I’ve written before about my increasing awareness of the passage of time. Often, I’m caught off-guard, in the close encounters with reality I’m not prepared or ready to have.

Such was Halloween 2014.

Stay little for a little longer, I wanted to tell my boy. You’re not too old for trick-or-treating. 

Enjoy that childhood you worked so hard to have. 

Maybe I was the one who needed the talking-to, I thought. If autism – and life – has taught me anything, it’s that things happen when they’re supposed to, not always when we want them to.

And the sooner we give up those ghosts of what should have been, the sooner more doors tend to open.

 

 

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Book Review: Letters to Sam: A Grandfather’s Lessons on Love, Loss, and the Gifts of Life, by Daniel Gottlieb

Letters to Sam: A Grandfather’s Lessons on Love, Loss, and the Gifts of Life 
by Daniel Gottlieb 
Sterling Publishing Co.
2006
176 pages 

There’s something powerful in a personal moment of vulnerability, of difference, of change or of broken spirit, when you find another soul who says, “Me too.”

Sometimes that person is a friend or a teacher. Sometimes it is a stranger. Sometimes, a relative.

Daniel Gottlieb is a Philadelphia-based psychologist, family therapist, columnist, and author. When Dan talks with his clients or writes about coping with life’s changes and unexpected turns, his insights come from a deep well of personal experience.

More than 25 years ago, Dan became a quadriplegic after an automobile accident paralyzed him from the neck down. As most of us would, he thought his career – and his life – were over, that he didn’t have anything left to give.

He was wrong.

Sometimes we don’t understand the reasons behind the circumstances in our lives. In Letters to Sam, Dan shares the moment he knew he would be able to continue living, but this memoir’s purpose is to show that there is sometimes even more of a greater reason than may readily be apparent.

For Dan, that reason is his grandson Sam. Like many grandparents, Sam is the very joy and light of Dan’s life – a reason to keep living in spite of adversity; however, theirs isn’t like most grandparent-grandson relationships. At 14 months old, Sam was diagnosed with PDD-NOS (Pervasive Developmental Disability), a form of autism.

(My boy was initially diagnosed with PDD-NOS shortly after his 2nd birthday.)

Daniel Gottlieb knows a little something about the frailty and unexpected nature of life. While he hopes he has many years together with Sam, he knows more than others that things can change in a matter of seconds. Thus, the concept of Letters to Sam – a touching book that is exactly that: a grandfather’s words of wisdom to his grandson about how to survive (no, thrive) in a world that may not always be too kind to people with disabilities, about embracing life and keeping hope, about making peace with the past, and ultimately, about finding acceptance.

 

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Book Review: The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, by Naoki Higashida

The Reason I Jump

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, by Naoki Higashida 
Introduction by David Mitchell
Translated by KA Yoshida and David Mitchell
Originally published in Japan by Escor Publishers in 2007
Published in the US by Random House, 2013
135 pages

Before reading The Reason I Jump, I hadn’t been aware of the reaction this book was getting from the autism community. Like similar books written by or about people on the autism spectrum, this one evokes powerful emotions and viewpoints, dividing readers into two camps.

There are those who believe it is “a one-of-a-kind memoir that demonstrates how an autistic mind thinks, feels, perceives, and responds in ways few of us can imagine” (as described on the book jacket) and who marvel that Naoki has achieved this at all.

That’s because “Naoki’s autism is severe enough to make spoken communication pretty much impossible …[b]ut thanks to an ambitious teacher and his own persistence, he learned to spell out words directly onto an alphabet grid. A Japanese alphabet grid is a table of the basic forty Japanese hiragana letters, and its English counterpart is a copy of the QWERTY  keyboard, drawn onto a card and laminated. Naoki communicates by pointing to the letters on these grids to spell out whole words, which a helper at his side then transcribes. These words build up into sentences, paragraphs, and entire books.” (pg. xiii)

It is in this process – and translation – that there becomes the tendency for a bit of wishful thinking to come into play, writes Sally Tisdale, in her excellent New York Times review (and one that I agree with) of The Reason I Jump.  Especially so when the translators are themselves the parents of a nonverbal child with autism, as KA Yoshida and David Mitchell happen to be.

“…but it was his explanations about why children with autism do what they do that were, literally, the answers that  we had been waiting for. Composed by a writer still with one foot in childhood, and whose autism was at least as challenging and life-altering as our son’s, The Reason I Jump was a revelatory godsend. Reading it felt as if, for the first time, our own son was talking to us about what was happening inside his head, through Naoki’s words.” (pg. xiii-xiv) ~ David Mitchell, in the introduction to “The Reason I Jump”

My desire and intent isn’t to point fingers or make unsubstantiated allegations. Those aren’t my issues with this book. (We’ll get to them in a minute.) In fact, David Mitchell’s introduction was my favorite part of the entire book. It was an excerpt from this introduction that made me curious about The Reason I Jump before seeing it at the library, and I was again gripped by Mr. Mitchell’s words as I re-read them during my lunch break at work. You can tell his is a life of caring and loving someone with autism, that he knows this life intimately well.

However, there are portions of this book that are … eyebrow-raising. 

The Reason I Jump is written in an interview/question and answer format, and also includes drawings and some original creative writing pieces of Naoki’s. I can only surmise that the writing was included to support the premise that a 13 year old boy is capable of writing things like this: 

“But for people with autism, the details jump straight out at us first of all, and then only gradually, detail by detail, does the whole image sort of float up into focus. What part of the whole image captures our eyes first depends on a number of things. When a color is vivid or a shape is eye-catching, then that’s the detail that claims our attention, and then our hearts kind of drown in it, and we can’t concentrate on anything else. 

Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it’s a kind of blessing given to us. Wherever we go, whatever we do, we can never be completely lonely. We may look like we’re not with anyone, but we’re always in the company of friends.” (pg. 59-60)

and

“Q39: Why do you like being in the water? 

We just want to go back. To the distant, distant past. To a primeval era, in fact, before human beings even existed. All people with autism feel the same about this one, I reckon …” (pg. 71)

The emphasis above is mine. Those of us who have traveled along the autism spectrum road with a loved one know the mantra all too well: if you’ve met one person with autism, you’ve met one person with autism. It’s called a spectrum for a reason.

My concern with The Reason I Jump  is how Naoki often claims to be “speaking” (for lack of a better word) for everyone who has autism. It makes me nervous when one person appoints him or herself the spokesperson for all who are afflicted with a condition that has so many variables and differences as autism. Now, since Naoki was 13 when he wrote this book, that’s forgivable but there are a lot of people who are putting much stock into his statements and ascribing them to ALL persons with autism. That, quite frankly, is worrisome.

“Q47: Would you give us an example of something people with autism really enjoy?

We do take pleasure in one thing that you probably won’t be able to guess. Namely, making friends with nature. The reason we aren’t much good at people skills is that we think too much about what sort of impression we’re making on the other person, or how we should be responding to this or that. But nature is always at hand to wrap us up, gently: glowing , swaying, bubbling, rustling.

Just by looking at nature, I feel as if I’m being swallowed up into it, and in that moment I get the sensation that my body’s now a speck, a speck from long before I was born, a speck that is melting into nature herself. This sensation is so amazing that I forget I am a human being, and one with special needs to boot.” (pg. 88)

Back when he was first diagnosed with autism, my son hated the beach. He refused to go near the ocean, preferring to pace along the shoreline shrouded in a towel like a devout monk. While other toddlers were gleefully building sandcastles and jumping in the waves, my boy (and we) walked back and forth, back and forth, back and forth, dragging our expectations of the perfect family beach vacation behind us.

It’s fair to say that we weren’t a friend of nature during those years.

My point is that it’s tempting to read The Reason I Jump as a position paper about what all people with autism think, especially if you care for and love a child who is nonverbal, but that its dangerous to view it exclusively in that light. Unfortunately, that’s how this book is being marketed.

Instead, it should be taken for what it is: a prompt to walk even more closely with the people in our lives with autism to see the prisms through which he or she uniquely views the world. 

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Weekend Cooking: Gluten-Free 2.0 (along with a few of my favorite gluten free things)

Weekend Cooking - NewWhen our son was diagnosed with autism almost 10 years ago (we’ll reach that milestone next month), we tried something that a lot of parents were doing: we put him on a gluten free and casein free diet.

In January 2004, this was anything but easy. This involved a lot of trial and error (like everything else about parenthood, autism or not) and with 2-year old twins, spending hours in the kitchen whipping up GFCF concoctions with ingredients I’d never heard of, ordering food online at astronomical prices to be shipped to our home in space-age looking container, and toting said food to family gatherings was not exactly how I’d envisioned this motherhood gig.

Still, we had it easier than most of our friends who were heading down to the children’s hospital for feeding therapies – or worse. Most importantly, our little guy responded well to the diet, showing significant improvement – along with, let me be clear, lots of therapy and love and patience. (He obviously still has his diagnosis.) Still, one day, we decided to introduce some “regular” foods to see how he did … and eventually, that was the end of that. After 3 years, we were truly gluten and casein free in every sense of the word.

Now, ten years later, I find myself traveling back on this road. It’s kind of like driving in a town you lived a decade ago when it was all farmland, where you knew the backroads once upon a time, but now? They’ve paved everything over and put in a four lane highway, and there are all these new stores that weren’t there 10 years ago when you were last here.

I’m back on the gluten-free path for me, not my boy. I’ve suspected for awhile that I’m gluten sensitive. I’ve been a lacto-ovo vegetarian for 17 years now, so meat isn’t the issue. I’ve always suffered from migraines. Stomach distress (to put it nicely) is very common for me after a gluten-heavy meal, like Italian dishes laden with pasta and bread. My cholesterol wasn’t so great – not bad, but it had been approaching a point where it would start to become a concern. For several months, I had unexplainable joint and muscle pain so severe that I couldn’t raise my left arm – and then it disappeared, and then it went into the other arm. (Of course, I didn’t go to the doctor.) There were often entire afternoons when I felt like I was in a “brain fog,” even during the months I wasn’t working. I chalked that up to the depression and stress of unemployment. There were the chest pains that felt like a heart attack, which sent me to the ER, where they pronounced me as one of the millions with acid reflux and gallstones.

Grain BrainSince the fall, I’ve been doing a lot of reading into all this stuff (I’m currently reading Grain Brain: The Surprising Truth About Wheat, Carbs, and Sugar – Your Brain’s Silent KIllers by David Perlmutter, MD) and I’m intrigued enough about the gluten connection. Same with dairy.

So, my new approach to eating is currently something like this:

Lacto-ovo vegetarian (a vegetarian who eats dairy and eggs) who eats occasional fish, who is trying her damnedest to be gluten-free and who is an intrigued vegan.

To complicate matters, I’m working on reducing my dairy intake. I’ve switched to almond milk in my cereal, and oatmeal – and I love it! I also eliminated sugar altogether in my coffee.

I guess it’s no surprise that I’ve fallen off the bandwagon several times. I’ll have a great week of eating gluten-free, feel terrific, and think that means I’m “better” …and go ahead and go back to eating gluten. This happened on Thursday – I was having a great week, completely GF (as far as I know)  … and I had a tomato, pesto, and mozzarella PANINI for lunch. With chips.

Total brain fog the rest of the afternoon whereas the other days were so productive. And stomach upsetment.

When the hell will I learn?!

So, it’s back on the wagon. I’m trying. One of the things that’s great this time around – as opposed to when we first embarked on the gluten free diet with B. – is how almost everyone knows someone who has “gone gluten free.” It’s not uncommon to find entire aisles and sections of GF products in supermarkets. What I would have done ten years ago to have had all the products that we have now!

Speaking of which, here are a few of my favorite eats. I have absolutely no affiliation with any of these companies or brands. I wasn’t contacted by any of them to do a review and I purchased all of these products with my own hard-earned cash. Thus, these thoughts are just my own opinion of gluten-free products that I’ve been trying and enjoying over the past few months.

Chex now makes seven varieties of their cereals gluten-free. I nearly fell over when I saw these in my supermarket. As a kid, I used to eat Chex all the time. I’ve tried the Rice Chex, Corn Chex, and Cinnamon Chex. My favorite is the Cinnamon. There is also a gluten-free Rice Chex version by Millvale that I’ve found at ALDI. That’s pretty good too.

Bakery on Main Traditional Oatmeal

Now that winter is upon us, I’m starting to switch to oatmeal for breakfast on occasion. But oats can be tricky because some oats are not gluten-free. Fortunately, Bakery on Main makes a variety that is and their Traditional Flavor Instant Oatmeal comes in six instant packets for additional convenience, which I appreciate. I added a banana to this and it was delicious!

Multi Seed CrackersFor snacking, I really like these Crunchmaster Multi-Seed Crackers in Roasted Garlic. I’ve heard you can find them at Costco, but I haven’t checked my store to see if they have them there.  I especially like these crackers with Tofutti’s cream cheese. 

Goodbye Gluten White Bread

Our grocery store was doing a sampling of Goodbye Gluten White Bread, which was really good. I’ve been buying it for several weeks. It’s a bit crumbly, but it’s the best texture to regular bread I’ve found. I also like it for when I have bread and butter cravings or for dipping bread into soup. (It’s also made in the Philadelphia suburbs – h/t to my hometown.)

Glutino - Apple Cinnamon Pastry

When I was little, I hated Pop Tarts and anything resembling them. Wouldn’t touch them. But when I saw these Toaster Pastries by Glutino, I immediately bought a box. Not sure what came over me, but they looked like something I had to have. I had tried Glutino’s breakfast bars and liked them, so I thought these would also be good. And they are. Their crackers are pretty tasty, too. Glutino is quickly becoming one of my go-to GF brands.

Amy's GF DF SF Mac and Cheese

Another one of my go-to GF brands is Amy’s. My family loves macaroni and cheese, which obviously isn’t something I can have anymore. (Mac and cheese was actually one of my trigger foods that something might be amiss.) But this? I could eat this for every single meal.

So far, the hardest thing about the gluten free diet has been giving up bread as well as the meat substitutes. We eat a considerable amount of fake meat in our house (we love Gardein products) and that’s become a hard habit for me to break. (Nobody else in this family is interested in going GF.) But when I do and I am more conscientious about what I’m eating, I’m finding that I really do feel better. Less headaches, less stomach upset, more energy and more productivity … can’t really argue with that.

Some things really are better the second time around.

Weekend Cooking - New

Weekend Cooking is hosted by Beth Fish Reads and is open to anyone who has any kind of food-related post to share: Book (novel, nonfiction), reviews, cookbook reviews, movie reviews, recipes, random thoughts, gadgets, quotations, photographs.

 

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