Passing through the eye of the needle

“I want to believe in the misdiagnosed but see: he is not altogether well. He escapes to a room in his head like a ship to sea, even as the gulls fly above, imploring: land, land.  I am earth beneath storm, the air inside a snapped reed.  I scream my helpless anger into an empty room.”

– Beth Kephart (A Slant of Sun)

It was eight years ago this month, January 17, 2002,  that we finally got the answer to a question my husband and I had been asking ourselves since Zachary was just 10 months old – Is he “all right?” Back then, being “all right” was the answer we wanted despite all evidence to the contrary.

We had gone the familiar route – hearing tests, assessments for early intervention, numerous trips to doctors and fruitless internet searches. Zach had been “evaluated” from every angle – and now, in the small office of a very nice licensed psychologist we would have our worst fears confirmed, our path forever altered. But, that dreaded diagnosis gave us a place to begin.

Getting in the game is, for many ASD parents, the hardest part. Labels, constructs, pigeon-holes – all are fashioned so that parents can qualify for special therapies, insurance coverage, placements.  Classifying, naming, qualifying that otherworldliness each of our kids possess is left to the professionals – doctors, therapists, educators – even legislators. The toughest job is the navigating;  That is left to us parents and they don’t hand us a road map.

Imagine being dropped on a lonely highway in the middle of nowhere and having only your wits to find your way. That is where most of us start out – thumbless, clueless – hitchhiking along to an undetermined destination.  I believe it is easier for the biblical camel to pass through the eye of a needle than for an ASD parent to enter the kingdom of  Autism. But, times are changing and there is much more available to today’s parents.

This morning, as an experiment, I googled “autism services” for my area of Virginia and the search yielded 27,600 results in .34 seconds – and when I googled “autism services” alone, my computer spat out 6,810,000 in .26 seconds.

Progress? Maybe. But the sheer number of routes are intimidating and most of us aren’t hoping to stay long. We have a “temporary visa” mentality – get in, get out – more of a rescue mission really.

I was definitely hoping to keep my visit short, in fact I felt instructed to do so. When Zach was initially diagnosed his psychological evaluation described his verbal skills with a caveat – that while he was expanding his vocabulary and had the capacity for appropriate interaction, this was typically “fleeting.” His skills at that time represented “an instructional window that if appropriately utilized, is strongly predictive of a good outcome.”

Reading that caused a tremor of panic inside me, because this isn’t the kind of window that stays open, it’s the kind that someone paints shut when you’re not looking. 

For a very long time after “D-Day” we did what we thought we should for Zachary – he ceased being our son during that lost time and became our project. We even bought a sturdy plastic file box where we housed all our war plans.   We pursued every avenue of therapy, diet and medicine with the urgency and fervor of the newly converted.

Some helped, some didn’t. Most didn’t. The only thing we knew for certain was how miserable we all were trying to figure it out. That fleeting window was what we focused on. In the end, Zachary was the only one who could show us how to keep it open. When we quit struggling out of exhaustion, with nothing but our helpless love to give him, he let us follow. He showed us more and more of the person he continues to become today.

The reality of the window is that Zachary will always be on the other side of it. I don’t have the power to pull him back through it, nor does he need me too. But it isn’t shut – I can follow him through it; I can let him show me around. I can relax in this new, exotic land. My guide is from here, he belongs here and there is so much he can teach me if I let him.

Zachary’s salvation is not something I can control, things will unfold as they should, and we will survive. In the words of Mother Teresa We can do no great things, only small things with great love. And that is enough.

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Hat’s off to “Sensory Friendly” films

“Sensory Friendly Films”  is a fantastic collaboration between AMC Entertainment (AMC) and the Autism Society of America.

They put their heads together and came up with a way for ASD families to go to the movies ” in a safe and accepting environment.”  Once a month, this theater chain will offer a showing of a family film “in a more accepting and comfortable setting for this unique audience.”

Lighting and sound will be adjusted, families will be allowed to bring their own snacks and most importantly “audience members are welcome to get up and dance, walk, shout or sing.”  I can tell you with absolute certainty that this venture is going to be a success. So many ASD parents are too wary of their children’s “enthusiasm” to go to the movies. We choose matinees at discount theaters where crowds are likely to be smaller, poorer and hopefully less judgemental. Plus, we sit by the exit with a getaway plan at the ready. I can remember taking Zach to see “Batman” (the first one with Christian Bale) – he was so excited during a scene where Batman tests drives the new Batmobile that he stood and applauded while fellow viewers yelled “sit down.” There were other movie outings (Spiderman 1,2 or 3) when Zach was aggressively shushed by strangers because of his ongoing monologues. I can’t count how many times we simply picked up and left a theater in the middle of a film because his behavior was too distracting for fellow viewers –  or too insulting. He used to comment loudly about bald men in our midst – and the follicly challenged masses never seemed to appreciate his observations. It was better to skeedaddle than get into a debate with someone when asked if I knew that my kid was “really rude.”

With “Sensory Friendly” films, families will be able to enjoy an outing where their child will be free to repeat lines, stand up, sit down, fidget and wiggle to their heart’s content. This is preferable to watching the film from the exit aisle while your son does zigzag laps. Think of the gentle understanding, the freedom from persecuting stares! Why, your dear daughter could eat some stranger’s popcorn and the worst that will happen is their kid will eat yours!

And imagine the stress free potty breaks to the ladies room escorting your son! When you get  “that look,” in the gals-only enclave, just reply confidently, “I’m attending a Sensory Friendly film, thank you very much.”

This month’s film is “Tooth Fairy”  and the sensory friendly version will be shown Feb. 6. You can check for a local theater near you on the ASA website at: http://www.autism-society.org/site/PageServer?pagename=sensoryfilms

Here’s to hoping you have a non-judgemental, incident-free outing!

Gizmo can help give a voice to those without one

In ASD circles, “assistive technology” can mean a variety of different things, from software to teaching tools.  There are literally hundreds of products available and they can be costly.

“Tap to Talk” is one of the coolest and fairly priced communication programs I’ve seen in a long time and it can run on a Nintendo! I would love to hear from anyone who has used it. From what I have read on their website (lots of raves from ASD parents) , it is an application currently available for Nintendo DS and personal computers. It can help a non-verbal child or adult communicate through  pictures (similar to PEC communication symbols) and you can customize the application from a library of more than 2,000 pictures, as well as adding your own.  Taptotalk.com advertises their service for $99.95 per year, which would not include the cost of a Nintendo DS. According to their web page, the Nintendo DS-Lite costs about $129 and DSi about $169.

I think this device could be helpful to ASD children who are verbal as well. I know Zachary still responds much more quickly to picture symbols than words and we used some assistive technology when he was very young.

I am really excited to see if  Tap To Talk has any success with adults on the spectrum.

Post a comment if you or someone you know is using one of these!

Life is sweet when you’re coming unglued

I am looking out my window at a dust bunny colored sky and craving soup instead of exercise.  Potato soup to be exact- made with real bacon and butter.

It has been a little over a month since I had surgery to repair a “ventral” hernia – doc speak for some of your innards poking their way through weak spots in your abdominal wall.  

To repair mine they made a two-inch slice vertically over my belly button, stuffed my escaping viscera back inside and closed me up.  The surgeon instructed me not to lift anything heavier than a phonebook for six weeks. After that I could  exercise as strenuously as I please. The problem is that I am nearing the six-week mark and the only thing that pleases me is taking it easy for a little while longer.

I’ve enjoyed having an excuse to do the light lifting around here. Besides, instead of stitches, my surgeon used glue to put me back together. Coming unglued is something that happens to me daily in Boy Town, but now that it might come with a visual, I use it to my advantage.  It’s been much easier to get the kids’ attention with disembowelment on the line – you just have to know how to tweak the drama.  A little grimace hear and there and one of the boys insists on carrying the laundry hamper downstairs. With a carefully placed hand over my midsection, I bend to pick up a wet towel from the bathroom floor and another of my brood rushes to hang it up for me.  Bracing against the kitchen counter with both hands,  I ask meekly if  they have finished their homework and I get a “Yes Ma’am.”  Life has been pretty sweet.

The problem is my midriff has relaxed quite a bit too – right over the top of my jeans.  I don’t know the extent of the damage in pounds, but  I’d say it’s easily a baker’s dozen. And then there’s the dust and dog hair issue – the devil’s in the details. While the males that surround me have been helpful and agreeable, they don’t give a whit about the flying filth and filaments. Not so for me – I wield sticky lint removers and vacuum attachments with the persistence and skill of the last Samurai.

Perhaps  I will  start slowly – in the face of a thousand dog hairs I could focus on one baseboard.  Maybe tomorrow I could tackle the smutchy ceiling fans, and the furry heating ducts. And once I’ve made the house fit for man (not beast) again I can summon the courage to get my expanding bod back to the gym.

But first, I really need to make some soup.

Scaring Armpits is Funny Business

There was a time, several years ago, when I used to make deals with God. It went something like this . . .Dear God, if Zach can learn to use the toilet I promise not to ask for another thing . . .Dear God, if Zach could just learn to eat with a spoon, I’ll never ask for another thing . . .Dear God, if Zach can quit grabbing women’s breasts . . .

Back then I just couldn’t see that my odd, loving, little nightmare on wheels would ever grow up, ever change, ever learn – not without divine intervention.  Instead of having faith in him I pleaded with the Almighty.

Zach was 7 when he finally conquered the potty and he quit using shite as an artistic medium. He began eating with utensils and behaving himself around the fairer sex shortly after that. Our rocky little boat set sail in smoother waters. We are still riding on an even keel, navigating a wake here and there, and I am enjoying Zach instead of managing him. Truth be told, he is the easiest of my offspring to deal with now.  Of course, the competition consists of two hormonal teens and a cranky 4-year-old, not too tough to outshine, but still – the boy is the cream in my coffee!

Nowadays, the only thing rockin’ our boat is the dreaded, awful P-WORD – puberty. It’s here and I can’t fight it. Pleading with a higher power now is not going to stop the fact that my beautiful boy is going to turn into a man, with all the smells and hair that entails.

Which is how the day came that I had to “scare his armpits.”

Since I have already walked the puberty road with my older two, I am familiar with the boy aroma that starts ripening to man stink somewhere between 10 and 12. So, with the help of his brothers, reeking of teen spirit but trained in the ways of the roll-on, we gave Zachary (ever the visual learner) a live demonstration of the latest hygiene habit he must acquire – deodorant. He watched, he listened and then, when I attempted to swipe, he clamped his arms down tight at his sides like two chicken wings. I, being trained in the ways of distraction, rolled a little on the back of his clenched hands to show him that the stuff was harmless and told him to smell it. Well, you can’t sniff your hands without lifting them and I went in for the kill.

Every morning after that I still had to pry open the pits, but I did it as quickly and quietly as possible. It wasn’t pleasant but the aftereffects were.  Recently though I had the bright idea that an aerosol (sorry, Al Gore) would be so much easier – why, I could spritz those stink holes before he knew what hit him! And so, armed with a travel size bottle of Axe (easier to hide in your hand) I snuck up from behind and managed to strike. This was easy to do, since Zach was busy admiring himself in the mirror (an essential part of his hygiene routine), but before I could manage the second strike, he turns to me all big-eyed and yells “You scared my armpit!” The both of us froze and then we started to laugh.  I laughed until tears were streaming down my face and when I finally gained my composure, Zachary dutifully lifted his other arm and said “Do it again!”

Now, scaring armpits is a delightful part of our morning. And I never had to plead with God once. . .

For those of you who could use a printable visual aide, go to this link: http://www.tinsnips.org/Media/social/deodorant.pdf

Temple Grandin – Always my hero, my hope

I  just finished listening to Dr. Temple Grandin’s latest interview on NPR that aired Jan. 5 and, as always, I am completely blown away by her. For me, Grandin is the guardian angel of autism. She gives us hope and understanding from a perspective every parent craves – from the inside.

When my son was newly diagnosed, nearly seven years ago, her book,  Emergence: Labeled Autistic,  was among the first I checked out of the library. I didn’t appreciate her insight then as I do now. To be honest, the part of the book where she talked about the “squeeze machine” she designed for herself and how its deep pressure helped calm her, scared and horrified me. At that time I could only see what lie ahead for Zachary from my own narrow view. And to borrow a line from Joni Mitchell, I can see autism “from both sides now,” thanks to her. 

Grandin, an expert on livestock behaviour and a Professor of Animal Science at Colorado State University,  was discussing her new book, Animals Make Us Human: Creating the Best Life for Animals, but she touched on autism here and there throughout the discussion. She said that both animals and autistic persons engage in repetitive behavior when they are upset – pacing polar bears and dogs who chase their tails are not unlike our kids when they are spinning objects or lining up toys.  She said she enjoyed playing with sand and watching it flow through her fingers as well as spinning a metal plate on her bedpost when she was overwhelmed with sensory input as a child. But, she cautioned, if she had been allowed to do that all the time she would never have been able to achieve the success she has now. She said her life at home was very structured and credits that structure with helping her become so functional. Mostly, the interview concentrated on her work with animals. She talked about how animals have the same basic emotions that humans do – “fear, anger, separation anxiety and seeking” – and how understanding that has helped her understand them and how better to handle them.

The interview, as all earlier interviews she’s done with NPR, was incredible, not just for the content, but for the simple fact that this brilliant woman is conducting an interview on NPR without a single misstep – she has learned to navigate both the neurotypical and the typical world with grace and confidence. Being a huge fan of hers, I am loath to miss any interviews she does, so I am in the habit of  tracking what she is up to – an internet stalker of sorts. I find her absolutely captivating.  She is such an inspiration, not only for all she has achieved in spite of her disability, but for her spirit. What comes through more clearly than her achievements, than her brilliance, in all her interviews is her happiness – and that is at the very root of my worries for my soon-to-be teenage son.  I have made my peace with all that he may not achieve, but, as we should for all our children, I want him to find happiness and a passion for something – a connection so strong to the world that he will not spend his days hiding inside his own mind.  She is living proof that there is a future out there for all our children on the spectrum to become happy adults  in whatever capacity that might entail. So, I am thankful, ever thankful for her – Thank you Temple Grandin, thank you, thank you!

If you would like to hear her latest interview in its entirety go to  http://www.npr.org/templates/story/story.php?storyId=99009110

And be sure to set your DVRs for Saturday,  February 6 at 8 p.m. ET, when Temple Grandin: , Autism Gave Her a Vision. She Gave it a Voice, premieres on HBO. Actress Claire Danes will portray Grandin. The movie is based on two of her books – Emergence  and Thinking in Pictures.

If you would like to see The Woman Who Thinks Like a Cow, a documentary she did for the BBC, click here http://www.documentary-log.com/d49-the-woman-who-thinks-like-a-cow/

The Boom List – Trudy’s Favorite Things

5. Regretsy.com – If you like a good bit of sarcasm as well as funny parodies then you will love this website which is a spoof on Etsy.com, a website dedicated to the craftastic folks who like to buy and sell their handmade items.  At Regretsy, they come up with creatively crafty items that no one will buy, but will bust a gut reading about – such as this handmade matchbox spoof on “Charlotte’s Web” that reads “Charlotte’s Evil Twin” – the web message the evil twin has spun reads “Pork 49 cents a pound.”  But this was not as hilarious as a posting about vulvacrafts – priceless!

  

 

4. The Bissell Proheat Select Pet 2X – When you live with 4 dwarves on acid and a crackhead blunderhound, this thing comes in handy! Let’s say your ready to crawl in bed with a good book and a nice glass of Pinot Noir after a tough day of muttering under your breath. But your freshly bathed preschooler, upon seeing the pretty glass of  “juice” decides to climb the nightstand to investigate. It’s all over before you try to read the same chapter you tried to read last night . . . or is it? This thing is a lifesaver! One minute to heat up and three minutes later – no vino stain. Of course, if you cry too hard while you are cleaning your eyes will be too swollen to do any reading, but you will have enough energy left to get yourself a fresh glass of wine. And when you wake to find a mess of Blunderhound poo (induced by the Hickory Farms summer sausage stick the goat-dog gobbled up with the paper still on it) just take a deep breath, get those yellow rubber gloves you swore you would never wear and let the cleaning fun begin!!  Bissell Proheat Select Pet 2X, I love you!

3. Trudy’s Sock Sack – If you hate socks as much as I do, this could be a great way to find the love again.  I have taken to stuffing socks in a little gizmo I bought once-upon-a-time at a dollar store.  Sock-like in appearance, it was originally intended for storing plastic grocery bags. It has an elastic opening at both ends and a fabric loop at the top. I recently found some again at the grocery store, made by Brawny and strangely enough, called the SacSoc! I now have one for each kid and hang them on  door hooks. Prior to my genius idea, when time allowed I would sort the socks and dutifully stuff the children’s designated drawers with them, but more often than not it was a pair-at-your -own-risk-two-basket method, one basket for dark socks, one for white. It wasn’t a bad method, but with the new one my kids actually wear matching socks now, so that is a bonus!

2. Green Smoke – the electric cigarette! A friend of mine purchased one for his mother for Christmas – I thought he was pulling my leg and had to google it! The environmentally friendly advertising ploy kills me! I think it would make a nice gift for the smokers in your life – they get the nicotine hit without the bad benefits that come from a real cigarette – no chemicals, no tar supposedly. And they come with little battery chargers! They claim you can use these in restaurants since there is no real smoke! I’d like a video of someone explaining that to a waiter. I hope they try it on St. Paddy’s Day, then they can order a green beer to go with their smoke! If anyone one actually tries one of these things please post a full report!

1. Taking the Law Into Your Own Womb – In the state of Utah gays cannot legally marry and unmarried couples cannot adopt, i.e. gay couples cannot adopt. Apparently this rubs one Utah legislator the wrong way. Rep. Christine Johnson (D-Salt Lake City), perhaps knowing how slowly this state’s laws catch up with the rest of the country, has taken a rather vigilante approach. She announced this week that she is currently carrying a baby for two Salt Lake City men who were legally married in another state. She is already 4 months pregnant. She decided to become a surrogate for her friends and is accepting no compensation outside of the medical bills. She said, “I can very much empathize with their desire to become parents and share their lives with and open their hearts to a child. I’m immeasurably grateful to be a mother. Gender or sexual orientation is less important than children being welcomed into a supportive, loving home. This child is going to have an amazing life.” I must say, Rep. Johnson, you may go down in Utah history as the most innovative lawmaker this state has ever known, you go girl!

Resolutions . . .

I haven’t written anything here in months  –  call it the doldrums, a dried-up muse, writer’s block,  reaching the knot at the end of my rope (and trying to untie it) –  but whatever you call it, it is in direct violation of my New Year’s resolution, which is rather vague right now, but involves me getting my head out of the sand, or my arse . . . whichever comes first!  Truth be told, I think I have been doing some wallowing while loosening the grip on my basket – definitely lots of napping, and growing – my waistline that is.

My resolution is still fleshing itself out (along with my waistline), but at the very least I have resolved to keep writing because  I am happier when I write, or so I’ve been told.  I hope to be thinner while writing as well, but baby steps for now.

What about the dried-up muse you say? Screw her – I have decided to do it the 12-steppers’ way and  “Fake it ’til I make it!”

Besides, I love the idea of turning over a new leaf, fresh beginnings, redemption – maybe I can ride that excitement right into a new, more engaged me! I have my doubts about my enthusiasm, my stamina to resolve much of anything, but I did get excited earlier today over an infomercial about E-Z Hangers (my closet is another resolution and could stand as a metaphor for my disorganized mind!) so there is hope! Also, the Rascal Flatts “Life is a Highway” song has been stuck in my head for days – another sign?

So, in the spirit of a new decade, I am rebelling against my inner demons!

But, enthusiasm aside, I can’t think of a damned thing to write about, so I shall bore you with one resolution in the making, which is to quit avoiding my books. You see, when I am a cheerier me I read like crazy – a total book whore – strong term, maybe, but I will and normally do, read anything and usually more than one book at a time. Why, books are lined up on my nightstand like Johns outside a cathouse.  Books collect around me like lint on black pants – not only are they are piled alongside my bed, they’re stacked on the floor, the dresser, the passenger seat of my car – and right now they are all collecting dust.

So far,  I am only four days into the New Decade and I have just finished  “The Master Butcher’s Singing Club” by Louise Erdrich and loved it.  In a nutshell, it’s about a singing German soldier who marries his war buddy’s widow, moves to the badlands and opens a butcher shop.  Lots of great characters, war, passion, love, vaudeville, war, murder, mystery, war and singing. I surprised myself choosing this since I had vowed not to read anything moving for a while – I read “The Road” by Cormac McCarthy over the summer and wanted to put my head in the oven.  A post-apocalyptic tale of a guy and his young son trying to survive while pushing a shopping cart of rags and canned peaches to the coast – dark, bleak, brutal and you will stay up all night reading it, but it may take you weeks to recuperate from it.  It’s now a movie starring Viggo Mortensen – I would almost go and see it, just for Viggo.

Now I am reading “The Absolutely True Diary of a Part-time Indian,” by Sherman Alexie – I am halfway through and it is a hoot. I am a firm believer in reading humor between any terribly moving novels, especially war novels. I should have tried a little David Sedaris after I read “The Road.”  “When You Are Engulfed in Flames” would really have helped get the images of ravaging cannibals in an ashen and hopeless landscape out of my head, title to the contrary.  In his latest book, Sedaris writes of his family, living abroad and of his efforts to quit smoking – his books never disappoint me and always leave me laughing out loud.

What’s next for the nightstand?  “The Physick Book of Deliverance Dane” by Katherine Howe. It’s about a college student who unravels a mystery involving early American life and witch trials.

And, my most recent discovery was a recommendation from author Sherman Alexie’s website, “Going Bovine,” by Libba Bray.  It’s actually considered teen fiction (but I am very immature) and it’s about a high school kid who has mad cow disease and an hallucinatory adventure.  Sound like fun . . .you should see the trailer on the Amazon.com website – check it out:

  http://www.amazon.com/Going-Bovine-Libba-Bray/dp/0385733976/ref=sr_1_1?ie=UTF8&s=books&qid=1262639822&sr=8-1

Hey, after only a few hundred words I am actually feeling better – go figure! And I hardly ever take my own advice. 

Stay tuned for the further unraveling of my mind – If life is a highway, I’m going to pull over and write about – hopefully all year long . . .