January 19, 2013

Dear Miss America Judges

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , at 11:37 am by autismmommytherapist

Miss Montana

Dear Miss America Judges,

This past Saturday night after a nice meal out I snuggled up with my hubbie, and turned on the Miss America Pageant. This occurred in part because nothing is as fun for me as watching gorgeous women parade around in swimsuits after having stuffed myself with bread (it was warm AND crusty!), and in part because in spite of having seemingly thousands of channels at our disposal, nothing was on television.

Literally.

As I settled deeper into our bed sporting my “forgiving pajamas” I heard something on the broadcast that forced me to sit my tired body up in bed (you know it was good if I was willing to elevate myself). It turns out that one of the contestants, Alex Wineman from Montana, is on the autism spectrum. After propping myself up I next watched in awe as this beautiful young woman took the stage to introduce herself in the twenty-three seconds she was allowed to do so. She made great use of her time, telling the audience she had autism and that she had been bullied as a child. She finished her spiel with almost casually mentioning that until recently she hadn’t known it was okay to have autism.

It was then I found myself crying during a Miss America Pageant. Dear God, what has my world come to.

At this point I actually made the supreme effort to get out of bed and google her (I’m so proud of myself) to find out more information about her. In flipping through a number of posts about her since that night so many of the things we autism bloggers are always writing about popped up, namely commentary she has given with such maturity, and confidence. During an interview with KRTV she declared that for her, “it’s not autism that defines her, she defines it”. That “spreading the message that everyone is different whether they’re autistic or not- it not only spreads autism acceptance, but a universal acceptance.”  And last, but not least, my personal favorite: “Normal is just a dryer setting.”

Amen to that.

Judges, I just want you to know (and I am certain you care dearly about my opinion) that if there’s a deserving contestant down the road, that it’s time for Miss America to get with the program, and crown a differently-abled woman onto that stage. Of course, I say this with the profound bias of having two differently-abled kids myself, but there’s another reason as well. Prior to the event, by online voting, Ms. Wineman won the People’s Choice Award.

In the words of the wonderful Sally Field, they loved her. They really loved her.

I neither know Ms. Wineman nor have witnessed her level of autism, but upon further reading I’ve learned that she’s had great difficulty with speaking, and has had speech therapy for many years. She even mentioned in the interview that she’d stayed in the background during childhood a great deal because of her difficulties conversing. Since she was bullied as a young girl, I imagine that along the way she had some trouble making friends. I would hazard a guess that since she didn’t know it was okay to be autistic until recently, that she sometimes struggled with self-esteem issues. And yet, there she was on that stage, pushing herself into an arena that requires public speaking engagements, a gregarious nature, and a high level of confidence and poise.

And throughout her brief time in the public eye that night, she achieved all of those goals.

So, my dear judges, I have to part ways with you by saying in my not so humble opinion that Ms. Wineman, despite not taking the crown, truly won that night. This is no slam against Miss New York, who actually made me enjoy tap dancing for three consecutive minutes. No, it’s just that this brave young woman had to scale mountains to get where she is, and it seemed as if the other contestants might only have had to traipse a few hills to get there.

And since apparently character factors so much in this contest, I just think that should have been given more consideration. It should at least count more than the 15% allotted to the “fitness/how does she look in a bikini” portion of the event.

Again, just my opinion.

So Ms. Wineman, if I haven’t made it clear, you got my vote, and obviously the nod from many other people in our country as well. Congratulations for taking a stand and giving inspiration to thousands of young woman who may be struggling daily with who they are, and how they fit into this tough, predominantly neurotypical world. As far as I’m concerned (and really, my voice means everything), you won, and you’re so right.

Normal is just a dryer setting.

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June 1, 2011

“You’ve Got Hate Mail”, by Billy Van Zandt and Jane Milmore

Posted in AMT's Faves, If You Need a Good Laugh, My Take on Autism tagged , , , , , , , , , , , , , at 9:43 am by autismmommytherapist

Recently I had the pleasure of venturing to NY with a dear friend to see an hilarious play, You’ve Got Hate Mail, co-written by playwrights Billy Van Zandt and Jane Milmore. It was pretty much a miracle that we both made it there and back given our combined geographical illiteracies (yes, my friend actually brought her GPS), but we did manage to see the performance and return home in one piece. Of course, the hours leading up to our departure were fraught with intrigue, as generally nothing is simple in autismland. I planned this particular evening long before I knew my son’s field day was also scheduled, and subsequently spent a good part of that day making wholly unreasonable deals with God to hold off the rain and any delays, pleas which if answered would enable us to make that coveted 3:30 train. Cindy and I nearly stroked out when confronted with purchasing our train tickets from a MACHINE, not a MAN, but we managed to successfully book passage to New York, not Newark. There were a few testy moments when we thought we’d be walking the forty blocks uptown to the theatre, but eventually a cabbie stopped for us, and delivered us there safely. We were fairly pitiful travelers, but we did it.

As my friend so aptly put it, it was the blond leading the blind.

I will share with you that despite living fairly close by, my trips to the Big Apple are few and far between. Most days making it to the end of the driveway and back to get the mail is enough of an adventure for me, as often I am surprised by what I find when I return to the house, and not in a good way. If I’m going to schlep to the city it had better be for a really exciting reason- either I’ll be consuming a fabulous meal, or I’ll be fabulously entertained. In this instance, I managed to do both. The only thing that would have made the night better was to have a driver deliver us door to door with someone reading “Go the F*** to Sleep” to me, and have the Triad Theater allow us to consume our two-drink minimum on the way home so we wouldn’t get tired by 8:00 PM.

I’m allowed to dream.

The play itself is conducted with the entire cast seated in front of their computer screens, the themes are marriage and adultery, and it is told in its entirety through texting and emails. Richard (Billy Van Zandt) performs as the cheating husband caught in a web of internet intrigue, when an email meant for his mistress Wanda (Fran Solgan) is mistakenly diverted to his wife Stephanie (Jane Milmore). As Richard digs himself deeper and deeper into a morass of immorality, the married couple’s friends get involved, also played brilliantly by Bonnie Deroski as Peg, and Glenn Jones as George.

Anything that captures my attention past 7:00 PM is a winner by me, and this play certainly fit the bill. The dialogue is funny and fast-paced, and each character in the ensemble is equally strong. One of the best parts of the performance is watching the cast’s hilarious facial expressions as each moment of the well-contrived plot unfolds, so I recommend getting there early to sit as close to the stage as possible. Perhaps you don’t need to get there at 5:00 as we did and run into the cast prior to the show (who knew intimate theaters don’t have box offices?), but getting there a little in advance will be worth it, I promise.

Van Zandt and Milmore have written countless plays and television scripts over the span of their several-decade career, and I’ve been fortunate to see a few of their productions. All of them, no matter what was transpiring in my life at the time, have made me laugh (and for those of you who also dwell in the world of autism, you know that’s no mean feat). The two of them are hugely successful, and clearly do not need Autism Mommy-Therapist to give them a good review.

But it’s my damn blog, and this play made me happy, so here we are.

I am aware of how difficult it is for some of my readers to get out of their houses for pleasure, but since most of you seem to be located in New Jersey and New York (except for my one international reader in Irleland, “Erin Go Bragh!”), I urge you to consider giving it a go. I laughed my ass off, didn’t think about autism for over an hour, and I’m not too proud to admit I snorted within the first ten minutes. As my readers know, I don’t put my name behind anything I can’t recommend unequivocally, and “You’ve Got Hate Mail” falls into this category. As an added bonus the Triad Theater is an extremely cool venue, and if you live in the area, you can be in bed by 11:00.

If your son is your 5:00 AM wake-up call too, that’s key. I have my priorities.

Those of you who read me also know I like promoting good people, and although I’ve only met two of the cast members, I can vouch for the playwrights themselves. Jane Milmore is the sister of the famous romance novelist Kaitlin O’Riley, a talented girl with whom I go back to our days at Rumson-Fair Haven High School. Jane and Billy themselves have always been lovely to me throughout the years. And since I’m increasingly convinced my four self-defense classes my mother made me take in 1978 would not protect me from a number of celebrities these days, the fact that they remain such good people after such a long span in Hollywood counts for a lot.

Truly, they’re just like us, except extremely talented.

Anyway, if you’ve got some free time (hah!) and are looking for a really funny play, I highly recommend you spend those limited moments at the Triad. Other than pageant moms, I can’t think of a group of people who deserve a fun night out more than parents of autistic children.

So Jane and Billy, continue to “break a leg” (a term I’ve never understood, which is only one of a thousand reasons I would make a sucky actress), and here’s wishing “You’ve Got Hate Mail” a long and illustrious run.

And once again, thanks for giving this tired girl the good seats, and some great laughs.

March 30, 2011

Wretches and Jabberers

Posted in Fun Stuff tagged , , , , , , , , , , , , , at 10:28 am by autismmommytherapist

This Friday night in New York a documentary film will be airing called Wretches and Jabberers (I know, it sounds like something that would have been broadcast on PBS twenty years ago). Despite its strange title, the movie is actually focused on a subject that, to my intense delight, is becoming more and more mainstream in the press. Its protagonists are Tracy Thresher and Larry Bissonnette of Vermont, and the film documents the struggles and triumphs of two adults with autism who remain all or mostly non-verbal, yet still have a great deal to communicate to the world.

And yes, if I had a life, I’d schlep in to see it.

Directed by Academy Award Winner Gerardine Wurzburg, the film follows both men on a tour of Sri Lanka, Japan, and Finland, as they speak with both “everyday folk” and Buddhist monks in an attempt to change peoples’ opinions regarding disability, intelligence, and modes of communication. Bissonnette possesses some facility with traditional language, Thresher does not. Both struggled in school and within their communities, but had whole worlds opened up to them with the creation of augmentative devices.

Yes, there’s a theme here. My fingers are crossed Justin’s iPad may one day lead to a similar success for him. Let’s just say my toes are crossed too.

When recently asked at a conference by the mother of an eleven-year-old girl with autism what advice the men had to give her, Thresher replied, “That is easy. Believe in their intelligence, presume competence, and most of all don’t sideline them. Make sure they live a life with dignity, having a purpose in life.”  That quote particularly resonated with me because my son, although non-verbal, possesses a fierce intelligence, one that might have gone unnoticed twenty, or perhaps even ten years ago. I shudder to envision the trials and tribulations these men must have encountered in childhood, living in a world not yet equipped to celebrate them. I shudder to think if I’d had my son at a “normal” age, this might have been his fate as well.

The director’s motivation for creating the film was to “challenge the general public’s perception about people with different abilities”. She considers this mission to be “both a human rights and civil rights issue”. Through their own accomplishments and Wurzburg’s “voice”, Thresher and Bissonnette have since successfully challenged these presumptions, as the two men formally regarded as “social outcasts” now are popular speakers at workshops and conferences. They have already altered the landscape of disability, simply with their presence.

And to Tracy Thresher, Larry Bissonnette, and Gerardine Wurzburg, a most heartfelt “bravo” for sharing and facilitating a story the world still needs to hear.

Wretches and Jabberers, for those of you who are not NY locals, will be playing at local AMC theatres nationwide on Saturday, April 2nd, World Autism Day.

For more information regarding the film:

http://www.wretchesandjabberers.org/

Larry Bissonnette:  http://www.myclassiclifefilm.com/

August 26, 2010

Guest Blogger Thursday

Posted in Uncategorized tagged , , at 6:12 am by autismmommytherapist

Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist

Today’s guest blogger is Brian Carr, a family friend, lawyer with a heart, and an exceptional writer to boot. Brian (and his lovely wife Jeanne) were two of the innocent bystanders I conscripted to read my original manuscript last year, and the fact that they still speak to me is a testament to our collective friendship. There are some wonderful insights in his missive today, and frankly, I think multiple copies of the second portion of this piece should be dispensed to all parents whose children receive an autism diaganosis so they can pass them out to friends and family (it’s just that good). Many thanks to Brian for giving up sleep to write this (I would never be that nice), and enjoy!

To Guest Blog or Not to Blog. By Brian Carr

“How’d you like to guest blog?” Kim asked my wife and I. That hadn’t taken long. We’d barely sat down with a drink and some chips, having shunted the kids to the pool, when Kim was already asking this question.

I suppose it was my own fault in a way. Saturday was our annual pool party pilgrimage to Jeff and Kim’s house. This month my wife Jeanne and I will have known Jeff for 25 years (since college) and Kim for maybe five years less. It was our job to bring the cheese and whatever else old college friends can offer. Mostly relaxing, casual and clever chat, the easy conversation you slip into with those who knew you before you had to pretend to be adults, when ill-conceived escapades ended up on as fond but secret stories, not broadcast on Facebook to future employers and the world.

It was my fault because Kim asked me how I was doing, and I’d tried to generously volley, saying, “Fine, but how are you? – I’m not the one pushing the rock up the hill.” After a short update on her blog, out came the guest blog question.

Guest blog? Was she honestly asking me to do something just 15 minutes after getting here? Wasn’t it enough that I’d spent the early afternoon the last place I wanted to be, stuck on the Garden State Parking Lot, crawling through traffic all the way from New York. Our two girls 11 and 14, were keen on their pool, but surely there has to be a pool that doesn’t require a 5 hour round trip. But it was a trip I made happily, if grumpily as we sat in traffic, a slog relieved only by a high speed motorcycle/state trooper chase up the breakdown lane, the only possible place to get a speeding ticket that day. The cops are probably still writing tickets.

“No,” I said, pretty quickly, “I don’t know anything about autism and I’d have nothing to say.”  Subject changed, we spent 5 or 6 hours of enjoying beers, burgers and good company, then headed back to New York. Around 2 am I woke up, thinking about the guest blog thing. Ideas? None. What do I know about this?

I’d managed to write something before which was helpful, but that was totally inadvertant: our Christmas-time family “newsletter” 5 years ago. I wrote it because…. I hate family newsletters. Which is why mine explained that I’d had such a bad year, having read in their holiday missives how wonderful everyone else’s lives were, about their great jobs, vacations and most of all their perfect kids. The sense of inadequacy, I explained, was driving me to drink, what with my wife who was tired of me, our un-exceptional children, disappointing vacation and generally dull life. After 2 pages of moaning, I concluded by saying that, “while things could always be better, we remain hopeful and most of all thankful, especially for our kind, forgiving, self-actualized friends. From your newsletters we only hope to glean the missing clues to a happier New Year.”

We got three reactions to this little stunt. Some thought it was funny. One couple, close friends, immediately called, offering to help put together an intervention. Seriously. We’re here for you, they said. Which they are, bless them. (Just for the record, they’re earnest newsletter writers. Most earnest.)  And then there was Jeff and Kim.

They dubbed it one of the highlights of their year. Almost at the end of their rope from dealing with Justin’s diagnosis, they explained that, that year at least, the circumstances made it too painful to read the otherwise welcome news about everyone else’s children. Hearing about someone’s comic disappointment on the other hand – the first we’d laughed in ages, they said. And so it was that I got to be useful again to them that night, just by listening for an hour or so over drinks in a New York City bar on a rare early day away from autism, as they described their weariness and isolation from having to tend to Justin constantly, the endless bureaucratic struggles for his care, and how I’d accidentally been helpful in print.

But what to say now? About the most I’d had to offer Jeff and Kim directly on topic was early on, putting them in touch with a former high school girlfriend and her husband whose oldest son was autistic and who were very involved in research fundraising. If nothing else, it was someone farther along in dealing with the situation who might offer some words of knowing advice.

Maybe someone could offer a few thoughts about how to interact positively and help out a friend or acquaintance with an autistic child. After thinking a moment, I had to assume this has been done before – my wife says there are no more original thoughts (I’m scared to ask her whether her pronouncement was one since she’s always the exception to her rules). Rather than research the topic to prove her right yet again, and because different things work for different people, I decided to list a few of my own thoughts, such as they are, if only to remind myself of my own goals.

After mulling the categories, it seemed that there was a decent overall rule of thumb, which is not a bad place to start: do those things you would to help someone with any other long-term medical condition.

Don’t withdraw. No matter how casual your relationship, no one wants to think that their child’s condition has made people pull away. Some people don’t deal with illnesses and serious issues well, but you can be sensitive to how you go about things if that’s the case.

Make yourself available. Don’t be afraid to offer. You don’t need to be there all the time for someone in order to be helpful. It’s a comfort to hear someone say that you’re there for them whenever they need you, even if they never take you up on it. Let them decide when to ask. You can discuss when they do whether you’re comfortable with the request.

Don’t contact them every time you see an article or a news story. (There was a featured story in the New York Times just today). Chances are, they’re already reading everything they can about the subject and thinking, if only I researched more… And everyone else is pointing out the latest article. Read a few yourself and you might notice that most articles are general and don’t have anything new or specific to offer. (Probably not this one either for that matter).

Every child is different. Remember that just because someone else you know has a child who’s made great progress doesn’t mean it will translate or apply. Chances are, they’ve researched the therapy in question and considered it. Someone else’s success is great for them, but that’s a painful reminder.

Give them a break. Autism is a full time job for parents. Marriage, work and parenting are hard enough on most couples even without the challenge of trying to help a child to live with, if not overcome, autism. Whatever you can think of that will help ease the load is probably a good idea. Visit, call, send joke spam, send a random gift basket or something for no real reason. Some part of their day has to be their own.

Educate your own children. If you’re going to visit someone with autistic children, explain to your own children what to expect. Children with disabilities are often mainstreamed today, so your children are probably in a better position to understand this than when I was kid.

Don’t brag or complain. Parents of children with autism don’t expect everyone else to stop having their lives which are autism free. By the same token, they also don’t want to hear someone brag about their perfect children, the overcompetitive striving we often default to as we begin plotting almost from birth what college our child will attend. Complaining about how hard our own minor troubles are doesn’t seem to go over well either. Instead, show equal interest, perhaps let them lead the conversation to topics that are comfortable.

Pray for them. I wasn’t much for praying when I was younger but that’s changed over time. Thinking about things beyond myself helps keep the big and little things in perspective, and the details become less stressful. To me, praying is like the moon. It’s far away, but it affects the tides, the spin and even the shape of the earth. If you can, tell them they’re in your prayers. Even if you’re not religious, tell them they’re in your thoughts. How many of us watch TV and cheer on our team as if it has some invisible effect on the game? If you can believe in that, why not cheer on a friend. It’s helps to know someone is pulling for you, like your own fans, your very own moon.

Write a guest blog if you’re asked. A day off from blogging might be a nice present. This one’s for you, Kim. Enjoy. You’re all in my thoughts and prayers.

April 7, 2010

My Real Birthday

Posted in Fun Stuff tagged , , , , at 9:23 am by autismmommytherapist

Children. First they consume you. Then they destroy you.

This isn’t a perfect quote from the excellent play “God of Carnage” that I got to see in New York City a week ago Saturday, but you get the gist. I can’t remember the exact wording because I was laughing too hard, but this is pretty close. Why, might you ask, was I even in NYC in the first place, shamelessly (and gleefully) ignoring my children?  Because the travesty of a holiday that had occurred just ten days prior on my actual birthday necessitated a do-over, so this year I have deemed March 27th as my “real” birthday (by the way, I’m 43, out and proud).

Birthdays are serious business to me. After my parents separated when I was nine, the holy day quickly extended itself into the entire month of March, because I knew how to work that whole guilt/divorce thing. There was the celebration of my actual birthday, and then subsequent fetes at each grandparent’s house, then, of course, the culmination of the celebration of moi which ended with the mandatory sleepover/pizza/Ouija board extravaganza. Although I shared the month with two of my grandparents and an aunt, they were just bit players in my birthday world. I, of course, was the star.

I kept the tradition going into adulthood because it reminded me of my childhood, and because it was an excuse to treat myself well in multiple ways. It’s something I think we as women forget to do too often for ourselves, and God knows we need to, whether we have a disabled child or not. I even continued the thirty-one days of glory after I had Justin, because if there was ever a time I needed a little fun, it was after having given birth to that little boy. Honestly, from then on, I should have made it my birthday year.

For the most part Justin has been respectful of the ritual, particularly on the exact day in March in which I officially inch closer to death. He has generally slept well the night before, chosen not to become ill on my special day, and overall, has acquitted himself well. He gets that I brought him into the world, and he owes me, well, everything.

Somehow, my other child missed the memo.

When I found out I was pregnant naturally with Zachary, which was rather surprising since my other child took up residence in my womb only after marinating in a test tube for three days, I was thrilled. After all the miscarriages and years of infertility, I had given my husband a deadline if he didn’t want to pay for a kid. He had to knock me up by June of my 39th year, because I don’t do babies after 40. It’s not that I have a problem with older moms. If you feel it’s in your best interests to push one out at 65, go for it, you have my blessing. It’s just that after all the fertility drugs, needles and surgeries my ovaries were begging me to “just say no”, and I had to respect what they’d gone through. I left conception up to Jeff.

My husband loves nothing more than a bargain, and indeed, the man came though. I quickly figured out that, like many men, he had left the job until the last-minute, which meant my second child was due exactly on my fortieth birthday. This, of course, would not do.

I wasn’t too worried however, as Justin was a planned C-section, and I was determined to continue the tradition. My firstborn was a ridiculously huge fetus, I was a fairly ridiculously tiny woman, and he was so far ensconced up my uterus my ob said he might qualify for Canadian citizenship. If I wanted him out before he turned eighteen, they had to cut. I figured we’d do the same for #2, which because C-sections are planned, gave me a little leeway to control things. Yes, I’d have to share my MONTH, but not my DAY. I could live with that.

Unfortunately, although we had picked out a lovely date in early March where nobody we loathed had been born, nor anybody we liked had died, my son decided to make an even earlier debut. I’ve been told neither I nor the baby had any control over when my water broke, but still, I think he was pissed. He wanted to steal my thunder.

And he’s been doing it ever since.

On my 40th birthday, when he was five weeks old, he decided it would be great fun to spike a 103 fever and land himself in the hospital for a week with strep. Believe me, nothing puts a damper on your birthday more than watching your son get a spinal tap.

He cut me some slack for 41, but last year he gave me bronchitis, while he himself recovered just in time to watch me hack and heave over my birthday cake. I am confident he was greatly amused.

This year was the final (I hope) coup de grace. I was worried about the other one, as a trace of green snot had made its appearance in Justin’s nose just 24 hours before the holy day, and as my husband was leaving for DC that morning I knew if he missed school, I was screwed. Justin rallied however, and I got cocky. I made it to Barnes and Noble for an hour (even got my favorite chair!), had a lovely lunch with one of my dearest friends, and felt triumphant. The curse was broken. This, in fact, was truly the Me Decade.

Alas, my triumph was short-lived. When Zach awoke from his nap he greeted me with a cough that conjured up Sammy the Seal, and I was immediately aware my youngest had contracted croup. ON. MY. BIRTHDAY.

Fortunately my youngest son’s pediatrician has insanely late hours on Mondays, and I was able to bundle him up (in pouring rain, OF COURSE!), get him to the ped, drop off the scrip that would hopefully prevent us from a repeat of last year’s croup (where due to my son’s burst lung capillaries I looked like an extra in Carrie), get him drugged, and contemplate the taking of my own mind-altering substances before Two and a Half Men started. At least I salvaged something.

Clearly, this was an unacceptable attempt at celebrating the day my mother foisted me upon the world, and as soon as everyone (including me) was stable, I planned a do-over. This year, my birthday was on March 27th. It involved only two hours with my children (balance people, balance), two meals I didn’t have to create or dispense with, a play that made me forget about autism and made me laugh, and perhaps most importantly, two five dollar hurricanes with extra maraschino cherries.

It’s the little things.