Category Archives: Special Needs

Book Review: The Boy Who Loved Too Much, by Jennifer Latson

The Boy Who Loved Too Much: A True Story of Pathological Friendliness
by Jennifer Latson
Simon & Schuster
304 pages
2017

Before reading The Boy Who Loved Too Much, I wasn’t very familiar with Williams Syndrome, a genetic neurological condition characterized by developmental delays, cardiovascular issues, visual-spatial challenges, distinct, elfin-like facial features and above average musical and language abilities.

Eli D’Angelo is among an estimated 30,000 people in the United States with Williams Syndrome. For three years, journalist Jennifer Latson followed Eli and his mother, Gayle, to explore the impact of Williams on their family. The result is this informative book, which I reviewed in today’s issue of Shelf Awareness.

You can find my full review here.

 

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Hell, No, to Betsy DeVos (Said the Angry Mama Bear)


If one values sleep, it’s probably not a good idea to watch Senate confirmation hearings before going to bed. Certainly not ones like that which occurred Tuesday evening when Betsy DeVos, filthy obscenely rich nominee for secretary of education, told Senator Chris Murphy from Connecticut (where Sandy Hook Elementary School happens to be located) that guns are a good idea in schools because, you know, bears.

It was laughable, the stuff of insta-memes, indistinguishable from The Onion fodder or an Andy Borowitz post. And part of me even wonders if there was some impetus from the power brokers-that-be, some nudge to say something kind of goofy that would prompt the Internet to lose its collective shit — all the better to distract from the real issues. Because that’s how this new regime operates.

Make no mistake: plenty more than bears are at stake here.

For me, the most egregious comment (and it is hard to choose just one) had to do with the Individuals with Disabilities Educational Act, known as IDEA.  Clearly, Ms. DeVos didn’t have any idea what she was talking about when she told Senator Tim Kaine (a.k.a. The Man Who Should Be Vice President) that she would allow the states (or, in her high-falutin’ parlance, “locales”) to decide whether to implement the federal law mandating that children with disabilities are entitled to a free and appropriate public education. Later, in an exchange with Senator Maggie Hassan, whose son has a disability, Ms. DeVos admitted she might have been “confused” about said law.

Confused, my ass. When it comes to this particular nominee, there’s no confusion. Through her prior actions and financial support of school choice, she represents a clear threat to the laws, standards, and policies that comprise public education in the United States of America. She puts us on a path to potentially dismantling the provisions that have guaranteed for four decades the same educational rights to every single child in this country.

Ever wonder what $200 million bucks can buy?  A hell of a trip back in time to when children with disabilities were forgotten and treated as less than by our government. We can’t afford to go back to those days. Our children deserve better than that. Now more than ever, they need us to be their advocates and their voice.

For weeks, my friends have been lighting up the phones–some every day–calling their elected representatives and others across the country. My Facebook feed has been full of daily actions, of phone numbers and sample scripts, of suggestions to put our representatives on speed dial.

And aside from banging out political social media and blog posts, I’ve stayed silent.  I’ve never, not once, called my elected officials despite being urged to do so. Mine were the usual bullshit reasons: I hate talking on the phone, my call won’t make a difference, blahdeblahdefuckingblah.

After watching Ms. DeVos’ utter ineptitude and lack of understanding, that changed.

By 7:15 a.m. this morning, I had left messages for my Senators, one of whom is Bob Casey, a member of the HELP (Health, Education, Labor and Pensions) Committee faced with Ms. DeVos’ nomination. I didn’t have a script and I was less articulate than I would have liked. But you know what? I didn’t care.

I realized that by staying silent I am giving way too much power to the Betsy DeVos of the world. The people who think that their money and their privilege can buy them access and power and the ability to trample on the rights of those less fortunate. I know people like Betsy DeVos. I know Betsy DeVos doesn’t care about my child with autism or Maggie Hassan’s child with cerebral palsy or your child or any other child in this country who currently receives an education.  She doesn’t care about your daughter who was sexually assaulted on her college campus. She doesn’t care about making that college affordable. She doesn’t care about existing policies that help to protect kids from harassment and bullying and threats much more serious than one of Goldilocks’ three bears coming to life and walking into a classroom.

This angry mama bear is pissed as hell and speaking up for her cub and every other cub because it’s my responsibility as a parent and as a human being who cares about what’s right and what’s just to do so with every fiber of my being.  And while there are days when it is too much and too overwhelming and everything feels futile, that’s when I will try to speak up even louder.

Because the alternative is simply far too much to bear.

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at the moment between inclusion and erasure

Japan massacre

You know that feeling you get when you realize you’re among like-minded souls who really, really get it, who understand what should be so evident and obvious to everyone else?

It’s an amazing feeling, isn’t it?  Understanding and acceptance wrapped up in group hugs and warm fuzzies.

It almost doesn’t matter what the it happens to be — and no, for once I’m not talking politics.   (Well, not really.)

On Wednesday, I spent some time at a national conference being held here in Pittsburgh with people who are passionate about making cultural organizations more accessible to people with disabilities. At this conference, guide dogs, wheelchairs, and assistive technology were the norm as attendees navigated the hotel’s conference rooms.

I was at the conference for work-related reasons, but it didn’t really feel like work. As a parent of a teenager with autism, I couldn’t help but remember The Boy’s early years — the black hole years, as I refer to them. The days when I couldn’t even take my toddler twins to storytime at the library because while The Girl would sit quietly, rapt and enthralled, The Boy would be a constant blur of motion, running for the door, making distracting noises.  The idea of going to a museum or a movie or a musical was absurd; hell, we could barely go to a park five minutes away without half a day’s preparations — and usually the exhaustion of chasing, chasing, chasing after The Boy or dealing with the stares or the inevitable meltdown became too much.

I realize now how much we truly missed out on, and it makes me angry and sad. Opportunities and experiences that are childhood mainstays were forever lost to us because there weren’t accommodations to make such outings easier or meaningful ones for our family — and especially, our boy.

Things have changed a lot in the 12 years since those dark days — in our family and, as I realized yesterday, at cultural organizations across the United States. (And I mean from all states; one session seemed like a roll call of delegates with people representing states from Montana to Massachusetts and everywhere in between.)  There’s exciting programming happening — and Pittsburgh is certainly taking its place among them with a growing number of sensory-friendly performances and accommodations at the ballet and symphony and festivals.

This post could end right here if I didn’t happen to check my phone during a break between conference sessions.

While daring to feel that things were improving, to hope for a day in my lifetime or my children’s lifetimes when people with disabilities are fully included and (dare I dream?) accepted in our society and (dare I wish?) not shot when others misunderstand the reasons behind their behaviors — my full heart suddenly felt punctured, like a water balloon.

There, on the conference floor amidst the guide dogs and the wheelchairs and the advocates and the people championing the needs of people like my kid, there I stood reading my friend Elizabeth Aquino’s post “Erasure” which was prompted by  Emily Willingham’s Forbes article “This Is What Disability Erasure Looks Like.”

I read both posts, which are vehement responses to the July 26 massacre in Japan that killed 19 people and left an additional 26 injured at a residential care facility for people with disabilities. A deliberate slaughter, this attack was, and one that was forewarned in a letter by the perpetrator in chilling detail.

“I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities,” the letter said.

[His] letter said he could “wipe out a total of 470 disabled individuals” by targeting two facilities for disabled people during the night shift, “when staffing is low”.

“The act will be carried out speedily, and definitely without harming the staff. After wiping out the 260 people in two facilities, I will turn myself in.”

As Emily’s article for Forbes states, this heinous act came on July 26, exactly 26 years to the day that the Americans With Disabilities Act was signed in 1990.

Which was the focus of the conference I was at, where we were talking about accessibility and inclusion.

I felt, at that very moment, stuck between two opposite forces: One that embraces and welcomes people with disabilities, including them in programs that were once inaccessible, and the other hell bent on erasing people with disabilities from the face of the earth.  

The danger is becoming complacent about stories like the massacre in Japan, of turning away or not reading because “it’s too much.”  Make no mistake: this massacre may have happened in Japan but there’s every reason to believe that this could have — and certainly has the potential — to happen here in the United States.  As Emily wrote, one only needs to look at the incidents that have already occurred.

  • An autistic man sitting on the ground, playing with a toy truck, and being the real target of the bullets that found their way to the black man trying to protect him.
  • Presidential nominees who mock disabled people and the people who defend the mockery.
  • A society that thinks any behavior that’s not “normal“ deserves to be publicly jeered.
  • Widespread abuse of and violence against disabled people, around the world.

We cannot and must not be complacent about this.  We owe it to all people with disabilities — the ones who came before and the ones who will come afterwards — to include them, to celebrate them, to elevate their stories and their lives against the evil that would silence their lives.

It is the very least we can do in remembrance of 19 people erased from this world.

Please consider taking a few moments to read in its entirety Emily Willingham’s 7/27/2016 article in Forbes (“This Is What Disability Erasure Looks Like”) and Elizabeth Aquino’s blog post “Erasure.”  Also worth the read is Ellen Seidman of Love That Max: “The massacre of people with disability and what parents can do.”

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for alison, for her beautiful life

I’ve always been fascinated with the interconnectivity of our lives. You know, if _____ didn’t happen, we wouldn’t have ever met.  Or the way we’re all just six degrees of separation (or less) from everyone else.

Alison Piepmeier is that kind of person for me.  She’s a “blog-friend,” as she once said to me. (And I probably should say right now that I’m not the person to talk to if you believe people you know “on the Internet” and have never met aren’t the equivalent of real-life friends. Because after blogging for almost eight years now, I know firsthand how someone you’ve never met can make a difference on your life. I’ve seen it. Up close and personal, time and time again.)

Girl Zines - Making Media, Doing FeminismBack in 2010, I read a post on Girl w/ Pen about an intriguing book by Alison Piepmeier called Girl Zines: Making Media, Doing Feminism. I knew about zines, but I didn’t know their history and significance to feminism. Awhile later, I spotted Girl Zines on the shelves of the Newark Free Library in Delaware, read it, and wrote this review.  Sometime afterwards Alison discovered it, and we became connected through our blogs.

We almost met once. Back in April 2011, Alison visited Pittsburgh for a celebration of feminism and zines, at an event that was hosted at my current place of employment.  We weren’t living in Pittsburgh yet, but had just been there a week earlier to get acquainted with the area.

Connections and missed connections.


I continued to follow Alison’s blog and her writing, still remaining her “blog friend.”

Then, in 2013, a yearly checkup at the pediatrician for my boy prompted a simple question from the doctor.

“Do you ride your bike in the neighborhood, maybe with a friend?”

As I wrote in that post, published here almost exactly three years ago on July 23, 2013, my boy’s eyes went to the floor.

There was no mistaking the look, the loaded weight of that inquiry.

His silence was just a moment, fleeting – accompanied by a quick look to me in the corner where I’d fortunately looked up from my phone to catch his glance.

His blue eyes said it all.

I don’t know how to ride a bike. 

My bike is kinda small. I got it when I was 7. It has training wheels. That’s embarrassing. 

What do you mean, a friend?

“I don’t really do that,” he said to the pediatrician. 

I remembered this post from my friend Alison Piepmeier about her experience with what is now iCan Shine, Inc. (formerly Lose the Training Wheels). I remember thinking how much my boy would benefit from a program like that.

I remembered reading Alison’s post when we were on the cusp of moving to Pittsburgh, and checking to see if our new city had the same program. I remember the feeling of this is going to be okay when I realized that they did. I remembered being at The Children’s Institute (the program host of the iCan Shine Amazing Kids Bike Camp here in Pittsburgh) and mentioning the camp during a job interview I didn’t get.

I remembered my boy’s face in the pediatrician’s office.

I looked to see when the Pittsburgh camp would be taking place, knowing full well we may have missed it. Again.

And there it was. Registration ended six weeks [prior]. 

I emailed the camp director anyway.  Long shot … just thought I’d ask … know it’s last minute …

There was one spot left.


Who knows if I would have learned about the bike camp for people with disabilities, a national program of iCanShine, if it wasn’t for Alison’s involvement with them as a volunteer and her deciding to write a blog post about the experience?  Maybe I would have, but maybe not. Regardless, it’s an example — albeit simple and small — of how one person directly influences the life of another.

Because even though my boy doesn’t ride his bike much these days, I will never forget watching him and experiencing the sheer pride in his accomplishing something that so many parents take for granted. This was a gift, a glorious momentous milestone of celebration on what has not always been an easy road.

And it was because of Alison. My blog-friend.


I’m remembering and reflecting on all this tonight because Alison’s time here on Earth is, unfortunately, very short. She is nearing the end of a long battle with cancer, a fight she fought with the utmost grace, dignity and honesty imaginable and one that she shared in heartbreaking blog and Facebook posts with those of us who care about her. Her words, here in what may be her last column for the Charleston City Paper, are as moving and poignant as ever.

Through her books, her scholarly contributions to the field of feminism and disability studies, and her work as a professor of English and Director of the Women & Gender Studies program at the College of Charleston, Alison Piepmeier has touched many, many lives — especially those of her husband and her young daughter Maybelle.

We may have never met, but I will forever be grateful to Alison for that blog post that led to my boy being able to ride a bike and thankful that her life connected with mine, albeit for a short time.

Much love, peace, and comfort to you on this journey, my blog-friend.  You will be forever missed, until we connect again.

99 Days of Summer BloggingThis is post #52 of 99 in my 99 Days of Summer Blogging project.

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Hidden Behind the Headline

PG - Autistic Adults Housing

Someone writing headlines at the Pittsburgh Post-Gazette must think that people with autism belong in a zoo.

I mean, there’s no other way to interpret what is truly an egregious and insensitive headline in the July 13, 2015 edition of our local newspaper.

I’ll give the Post-Gazette the benefit of the doubt by saying that I don’t think that the phrasing was deliberately intended to malign people with autism.  I mean, I certainly hope not, but who can tell? Given the vitriol in a hateful column recently penned by an associate editor of the Post-Gazette, the paper has demonstrated that they have no qualms with discarding a person’s feelings and dignity in exchange for the clicks garnered by a sensationalistic screed.

Let’s put it another way: would the Post-Gazette have written (and gotten away with) the same headline about people who have cancer? Who have brain tumors? Who are gay? Who are a certain race or ethnicity?

I doubt it.

Motive aside, this headline is more than an unfortunate choice of words. By using the phrase “with the general population” in addition to “house adults with autism” (as found within the accompanying article) the Post-Gazette is perpetuating decades of misunderstanding, stigma and shame while conjuring up a time in our country’s not-so-distant past when people with disabilities were, in fact, sent away to live in horrific institutions. Often subjected to abuse and inhumane conditions, the atrocities they suffered never saw the light of day because they were hidden away from the world.

We like to think that we’re more evolved now, thanks to greater awareness and advocacy efforts and legal strides. But we’re really not. Even today, people with disabilities still are treated as lesser individuals in every sense. The unemployment rate for people with disabilities is abyssmal; last month, the U.S. Bureau of Labor Statistics reported that “in 2014, 17.1 percent of persons with a disability were employed…in contrast, the employment-population ratio for those without a disability was 64.6 percent. Bullying and all forms of abuse are higher among this constituency.  Supportive services vary significantly from state to state and at 21, all of those supports vanish.

Which is, ironically, exactly why a housing complex like the Dave Wright Apartments is so desperately needed. With 1 in 68 children identified with autism spectrum disorder, the need for living arrangements like this one will only increase as these children become adults. Developer Roy Diamond, Elliot Frank, president of the Autism Housing Development Corp. of Pittsburgh, ACTION-Housing Inc., NHS Human Services, and Goodwill are to be commended for their vision and efforts in seeing this exciting concept become a reality. Their work is giving people with autism an opportunity to live fulfilling, independent lives while providing their families with a modicum of peace of mind as they plan for a time when they are no longer here to serve as advocates and caregivers for their loved ones.

People with autism deserve this chance.

And they sure as hell deserve a lot more respect from the Post-Gazette than they received in Monday’s paper.

 

 

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sunday salon: ides of march edition

The Sunday Salon

Time and Place:
Sunday evening / the couch in the living room. As per usual.

Weekend Happenings?
Not much. The Girl went to a SibShop yesterday. It’s a support group for kids who have a sibling with special needs. It took me awhile to find such a group and they’ve increased the number of sessions to three weekends per month. A bit of driving around on the weekends, but as much as I might complain about trekking around Pittsburgh, it’s worth it because The Girl loves going and the facilitators are wonderful with her. Afterwards we enjoyed lunch at Panera and I came home and took a long nap.

Today’s been a lazy day. Grocery shopping was the extent of my activity. I should have done more, but I’ve had a bad headache all weekend and wasn’t up to it.

Reading:
The last week or so has been a mixed bag on the bookish front, with everything from a book that will likely be on my Best Books I’ve Read in 2015 list to two DNFs.

The Paying GuestsLet’s start with what I loved. The Paying Guests by Sarah Waters is …well, I was unable to put this down. Set in 1922, Frances Wray and her mother live together in their large South London mansion following the deaths of Frances’ brothers in the War and then her father’s illness. Her father’s mismanagement of the family’s finances makes it necessary for Frances and her mother to rent out some of their rooms. Newlyweds Lilian and Leonard Barber join the household as “paying guests” and change the dynamic of the Wray house – not to mention each one of their lives.

The Paying Guests also is on the just-announced longlist for the Baileys Women’s Prize for Fiction (formerly the Orange Prize for Fiction) along with 19 other contenders. I’ve read only one other nominee (Station Eleven) and if I had to choose between the two, I would definitely choose The Paying Guests.  Anyway, I’m hoping to have a full review up soon.

My DNFs were Last Night at the Lobster by Stewart O’Nan – about a group of restaurant workers during their last night at a Red Lobster which is slated for closing – and Inside Madeleine, by Paula Bomer. The latter, a collection of stories, has been hyped for being evocative and daring; however, I read the first two (“Eye Socket Girls” and “Breasts”) and found both to be eh rather than edgy. It didn’t do much for me, so back to the library it goes.

Watching:

House_of_Cards_title_card
Still completely addicted to and immersed in House of Cards. I’ve just started Season 2 and will hopefully have a chance to watch episode 2 and maybe 3 tonight.

Listening:
ZZ: A Novel of Zelda Fitzgerald was on my TBR Goodreads list, but reading West of Sunset by Stewart O’Nan made me more interested in picking this up.  Z is my audiobook this week.

Blogging:
Remember the #1000Speak post I did as part of 1000 Voices for Compassion? (Listening to Our Better Angels) Well, now this project has become a monthly thing and on Friday March 20 we’ll be writing on the theme of “Building from Bullying.”  Join us on the 1000 Voices for Compassion group on Facebook. 

Promoting:

 

Bloggiesta - Spring 2015Bloggiesta comes back this spring and it is better than ever! You guys, it is a week this time. A week! I have a to-do list a mile long for this blog, so I definitely could use that amount of time. Not sure what Bloggiesta is or what it involves? Click on the button to be taken to the Bloggiesta page or go here.

Loving:

Daffodils - 3-8-2014

Look closely … my daffodils are coming up after a very long winter! You see them? Full disclosure: this is a photo from last March, taken on 3/8/2014, but they look the same right now.

Hating:
This headache that I’ve had most of the weekend. I think it’s weather-related (yesterday was rainy and miserable) and I’m being very cautious about not taking much of anything like Advil or my Maxalt because I’m scheduled for a root canal tomorrow.

I actually hate the headache more than the root canal. This is long overdue – my dentist wanted to do this back in 2012, according to my chart (I conveniently forgot about that) and now this tooth is starting to bother me. So, as much as one can look forward to a root canal, I am.

Wanting:
Don’t laugh, but I really want to do some spring cleaning around the house. (I know … those of you who know me are probably thinking my blog’s been hacked.)  Every room in this house is a disaster and could use some freshening up. Nothing major – we don’t have the budget for anything crazy. I’m talking about some significant decluttering and deep cleaning (I might hire someone for that), framing some photos for the walls … simple things.

Hope your weekend has been a good one!

 

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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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