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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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!

When life hands you a rusty-spoon day, call for help!

Simpler times - ah life!

Simpler times - ah life!

I have from time to time, rated particularly challenging days with my all-boy progeny as “rusty spoon” days.
These are the days when I report to my husband that if time travel were possible I would head back to the early 90s and tear out my ovaries with a rusty spoon.  I tend to dabble in metaphorical sadism when I am at my worst. And obviously, with time travel an impossibility, there is no need to worry that I will be castrating myself with rundown flatware any time soon. Also, this kind of hyperbole has great shock value – it gets my feelings across in a graphic, attention-grabbing way, that my husband can read as clearly as a red-flag at the beach when the currents are too high for one’s personal safety.
Obviously, it’s a cry for help.  I realize this kind of black humor is frowned upon by decent mothers and would-be mothers everywhere, but then they are not in my boat, nor am I in theirs so, I will leave them to come up with their own metaphors for crying “Uncle”.
These women would also find no solace or humor in the saying “mothers of teenagers know why animals eat their young.” But, yesterday, I considered this as a possible tattoo with only slightly less seriousness than my H.G. Wells-inspired spoon surgery.
It started when I went off my nut about the condition of the family room and began threatening removal of any and all fun possibilities in technicolor language until said mess was cleaned up.  It finished with my dear teen digging in his belligerent heels to the injustice of it all and flipping me a certain gesture that I can say with all honesty I never imagined in my wildest dreams would be intended for me. I’m not naive, I expected the gesture would be exercised at some point in his adolescence, like when the first mad driver cut him off in traffic. But, not when the first mad mother asks him to pick up a few dishes and socks. I was so shocked I actually called my husband at work – which is the equivalent of “Now you’ve done it” around here. He‘s like my fire extinguisher – “break glass only in an emergency“.  My husband is a passionate *cough* if not volatile devotee of RESPECT. Perhaps it’s the Navy man in him, but calling Dad, is not done lightly. I am a very independent person. I pride myself on managing home, hearth and unruly boy brood with a minimum of whining. Mostly because reaching the Navigator on an aircraft carrier is a lot like trying to order pizza online – it’s such a huge hassle you can’t even remember why you wanted to do it in the first place. Sometimes this is a good thing, I hang up out of frustration with something new to be pissed about.
Another first of my rusty spoon day- my dear teen got to hear me get in touch with a phrase I vowed never to say to my own kids, “Just wait ‘til your father gets home.” 
I guess it was a day of firsts for us. And, like all adventures in parenting, we both learned something.  I hope that my son learned there are some lines you shouldn’t cross, (that is a direct quote from his Dad) and that paying the piper is more expensive than listening to her pipe, and lastly, waiting until your father comes home is a long and uneasy wait.
I learned that my little boy is not such a little boy anymore, and that tirades aside, respect will have to be a two-way street if I want to get through these coming years.  I will have to take a page from my husband’s book as well – talk less and act more.
Also, I am going to try giving more responsibility to the irresponsible  and see how that goes.  My eldest has the “Tom Sawyer trick” to doing chores – if done badly enough perhaps someone else will step in and do them. And, I hate to say it, it has worked in the past.  I am also going to stick to my guns when it comes to the consequences. I have trouble staying the course when my children are unhappy, and unfortunately they know this. As my husband says, they play me.
 I have to remind myself that while I can’t always give them everything they want, I do give them everything they need. I have to remind myself that while my teen may hate me from time to time I can love him enough to make up the difference. And loving him doesn’t mean loving his behavior.  In a past argument he accused me of only caring about his future, and I am guilty as charged. I need to stay focused on what he can do today.  I’m sure I can step back a bit, but I will not step away.
While having two D’s on his report card “is still passing” and that’s hunky dory with him, the consequences that loom are summer school and 3 months of restriction. While he believes homework is just busy work and “beneath him” so too will be my extraneous housework, chores and chauffeur duties. While I may have to watch him flush away some opportunities and close some doors that could have been open to him, I will love him enough to let him make his own mistakes and be a soft place to land when he falls.
And should adolescence rear it’s ugly head again as it most likely will in the near future (my middle son turns 13 in two weeks!), I will try to remember that while standing knee-deep in the flow of life, sometimes all you can do is roll up your pants and call a plumber.

Put your money where your mouth isn’t, President Obama

Kolan McConiughey bowls at Colonial Lanes in Ann Arbor, Mich.

Kolan McConiughey bowls at Colonial Lanes in Ann Arbor, Mich.

There is a buzz moving across Holland since President Obama planted his foot squarely in his mouth Thursday while chatting with TV talk show host Jay Leno.

During his interview with Leno, he was asked if they would be removing the bowling alley at the White House (an obvious jab at Obama’s poor bowling skills made infamous during his campaign for president.) Obama said he had actually been practicing and his latest bowling score was 129. He went on to compare his bowling skills to the Special Olympics. Perhaps he was taking a shot at some self-deprecating humor, but it was the short-sighted shot heard round the world – well at least as far as Holland. (See the clip: http://www.youtube.com/watch?v=vE0yAEvVsUo)

Blogs by parents of special needs children were aghast, even Sarah Palin got in her licks. But most media outlets have let him off pretty easy and frankly, (we speak that way in Holland) that sucks.

In Holland, the “R” word is taboo and no one has anything but the utmost respect and awe for the athletes of the Special Olympics – to disparage them in anyway in these here parts, well them there’s fightin’ words Mr. President.

Which leads me to the best news reporting done on this whole heartbreaking incident, and the best headline too:

 Special Olympics bowler to President Obama: Let’s meet in an alley sometime

 Corey Williams, from the Associated Press, interviewed this bowler. His name is Kolan McConiughey, and he is mentally disabled. According to the article, the 35-year-old has an IQ of less than 50 – 100 is considered average. McConiughey lives with his foster care mother in Ann Arbor, MI and has worked at the same grocery store for 16 years as a custodian. He is also one of the nation’s top Special Olympics bowlers with a mean left-handed hook and five perfect games to his credit. When asked about Obama’s bowling skills, McConiughey’s response: “He bowled a 129. I bowl a 300. I could beat that score easily.”

He followed that up with some advice for the President: “I’d tell him to get a new bowling ball, new shoes and bring him down to the lane. Keep his body straight, his arm straight and keep his steps straight. He has to practice every single day.”

The President could certainly learn more than bowling tips from this man, who exemplifies the grace and generosity of a true Hollander.

Unfortunately, that’s pretty much all there was to the story – human interest fluff. It was wrapped up neatly with the widely reported apology the President made to the chairman of the Special Olympics from Air Force One and a quote from the foster mother brushing off the gaffe as a forgivable mistake.

Special Olympics Chairman Timothy Shriver also felt the apology was sincere: ” He expressed his disappointment, and he apologized in a way that was very moving.”

It was also reported that Shriver wants to have some Special Olympic athletes visit the White House to bowl or play basketball. I expect that will be the next top-loader-spun story and I wouldn’t be a bit surprised to see Kolan McConiughey bowling on Leno sometime soon. For most of the neurotypical and un-physically challenged world, that will be enough, but here in Holland, memories are long.

So, Mr. President, all of Holland will be watching to see you make good on this gaffe by putting your money where your mouth isn’t. Using a phrase everyone in my region of Holland, understands: “perseverate, don’t prevaricate.”

 President Obama could start with some updates at his next state-of-the-union address. While I’m sure the economic crisis consumes most of his time, perhaps his recent gaffe would make a nice segue for the latest news on the Community Choice Act, a bill he co-sponsored with VP Joe Biden and has spoken little of since he said “We can”. This bill, which seeks to expand care services for the disabled, will be a tremendous step on the road to equality the disabled and their families are still traveling. The legislation will give the disabled a choice of living in their community, rather than an institution.

And while he’s addressing that, how about the $10 billion promised to invest in early intervention programs under another bit of pending legislation – the Individuals with Disabilities Education Act (IDEA). And, directly from Obama’s early childhood intervention plan, he said he would “support setting a national goal to provide re-screening for all two-year-olds – the age at which some conditions, including autism spectrum disorders, begin to appear.”  There’s been no action on that either.

You see, in Holland, we do have a sense of humor, “early intervention” here is an oxymoron, like “honest politician.”

We are also waiting to see if he will reinstate Executive Order No. 13173 which President Clinton enacted just before he left office. Increasing employment and pay for the disabled is a promise Obama made again and again during his campaign. So, what is the deal with those 100,000 federal jobs for people with disabilities? He said he would issue this executive order early in his first term and designate a senior White House official to assure that all federal departments and agencies meet the mandate. When will we see some action on this?

There are many more promises our president has made to the disabled community that I could list, the Help America Vote Act, increased funding for the National Institute of Health (under funded since 2003) and making the United States a signatory to the UN Convention on the Rights of Persons with Disabilities. We will continue to wait patiently for some action here in Holland, waiting is  something Hollanders know intimately – it’s a national past-time here.

  So, can Holland forgive Obama’s heartbreaking comment? To steal a phrase from his playbook, “yes we can”.  But how long will Obama’s Special Olympics blunder be remembered in Holland? I think it will be remembered for a long time to come. I say that because the disabled in America are the caboose of the equality rights train, and their journey to becoming an accepted and respected part of the human spectrum is far from over. Until then, comments like this will continue and they will be easily forgiven with public apologies and photo-ops.

But I hope not. I voted for change.

 

Moles Unite – Get Back Out Into The Big, Bad World

Safely celebrating a birthday in our burrow

Safely celebrating a birthday in our burrow

 There is a trend among the parents of young autistic children I like to call the  “mole syndrome” – where you and your untypical family go underground.

 There are many reasons for the mole syndrome, but the initial one is safety. Many of our kids on the spectrum just don’t behave safely when outside of the confines of the burrow. They are impulsive to the nth degree, many like to run (mostly away), most like to climb (the higher the better) and I haven’t met one yet that isn’t attracted to water- they will head straight for it like a bloodhound to a scent.  And, when it comes to water, they are not particular about the source, be it a puddle, fountain, river, ocean or toilet. When Zach was 4 he had a penchant for climbing in any toilet he encountered every chance he got.   (Incidentally, while at an autism conference a few years back I recall a slide show on just this nuance – a shot of a young lad soaking up to his chin in the can – it got the biggest laugh I’ve ever heard at one of those gigs.)

So, we parents learn to hollow out a little safety far away from prying eyes. We take turns “making appearances” (those are important!) we don’t eat out, visit friends, go to movies, malls, or markets together because the pandemonium factor is so daunting. 

Back at the burrow, we parents can let our hair down. We don’t have to take turns watching the doors (even the ones to the bathrooms) because they’re deadbolted and wired with alarms and potty locks. Who wants to visit the neighbors whose appliances aren’t bolted to the walls? Why eat out at a restaurant when your darling child can snarf food in a Tijuana minute and no amount of crayons is going to keep him or her from climbing under the table to look at the pattern on the rug, or better yet climb over the booth to taste the man’s french fries behind you.

I remember the last family outing we had right before we dug into our burrow.  Zach was 4, Patrick was 6, and Tyler was 8. It was Tyler’s birthday and we had arranged for a bowling party for a half dozen of his little friends.  Everything was going great – we got through pizza and cake without *cough* much incident. Then the kids started to bowl. In our infinite wisdom we rented two lanes, one for the birthday party crowd and one for the “Z ” man. While my husband was gently showing Zach how to roll the ball between his legs, Zach had a better idea. He took a running start and slid headfirst all the way down the finely polished lane. He was just getting ready to climb through the pins to check out the mechanics of the ball-return when the manager of the place was at our side shouting. We went home and didn’t emerge for a year and a half.

The other reason for the mole syndrome is one we parents don’t like to admit, embarrassment. It gets better over time, in fact the longer you live with an autistic person the less likely you are to become embarrassed about anything – and I mean anything, nudity, loud comments on balding doctors,  your son ogling (and sometimes hugging too vigorously) large-breasted strangers. Once this hurdle is made, along comes another -tedium – we tire of explaining our children to ignorant strangers whose senses are more impaired than our kids’.

Here’s a snapshot:  My three boys and I are taking a  five-hour flight from Los Angeles toVirginia Beach after spending Christmas with my brother’s family. Two hours into the flight Zach is calling me a “dumbass” over and over and over again. (Sidenote: I boarded this flight with Zach in a kid harness and his name, flight # and my cell # taped to the sweatshirt on his back.) I am done being embarrassed and am fairly numb if not catatonic after an hour of this.  Passenger X, to my left, who boarded the plane right behind me when Zach was trying to touch each and every person on the way to our seats, says: “What’s wrong with your kid?”

I would like to rewrite this whole episode with a pithy reply that makes Passenger X feel like shit, but what I really did was ignore Passenger X and his asshole comment. 

I think that may have been the beginning of our emergence back into the world and now we fly our freak flag with the regularity that Zach deserves.

We are still cautious though, movies over two hours are a no-no, a buddy system for public bathrooms (even if Zach, who is now as tall as me has to use the Ladies room), no going where we’re not welcome (a post for another time) and no apologizing or explaining Zach to anyone.  

This works well for us most of the time and each new outing gives us the courage to try new things or adapt how we operate. Sometimes all it takes to get back out in the big, bad world is a little bravado and a dash of creativity.

One thing we discovered was the joy of Hibachi bars.  If someone is playing with fire, juggling knives and making volcanoes out of onions, Zach is less likely to wander around the restaurant checking out the customers and looking for french fries.  He will announce loudly to the chef that he thinks shrimp is “disgusting”. And we have found it best not to let him participate in the “catch-a-piece-of-chicken-in-your-mouth” game. Zach was indignant for a week after one of our outings, telling anyone who would listen about the man who hit him with hot chicken!

Another trick we have learned is to bring along some of his favorite Star Wars Action figures in case we have to “wait” for any reason (the DMV, lines at Disneyland) – these keep Zach happy and since he makes the most authentic light saber sound effects you’ve ever heard there is an added bonus – free entertainment for strangers!

His Star Wars guys helped us get through another long flight to Los Angeles just last Spring – with his tray down,  Zach happily recounted  entire scenes of dialogue to the delight of the woman we were sharing a row with.  It was a little touch and go when he dropped Obi Wan into her lap, but she kindly handed it back to him and he kindly thanked her by saying “May the force be with you.”  An absolutely priceless moment for his proud parents!

“Normal is nothing more than a cycle on a washing machine.”

2008-june-showalter-visit-0291This is a great quote from Whoopie Goldberg and one of many quotes I love about the word “normal.”
When anything or anyone departs from an accepted standard, we call that abnormal, odd, freakish. My son, Zachary, has been described with many of these adjectives and more over the course of the last 10 years. But none of those words really fit him. What he is is exceptional, extraordinary, rare and striking.
I had to add striking, because he really is. He’s a damn good looking kid. He has the most beautiful blue cow eyes and a leprachaun smile that would melt an iceberg. And when he smiles, he has this look, like he has some really delightful secret and he just can’t share it with you, not yet.

Zach sees the world in such a unique way that he has changed the way I, and the rest of this family, look at the world. The stereotype of an autistic person is that they are unfeeling, checked out, vacant, something is missing. I believe it is exactly the opposite. They feel too much, they are clued in to everything going on around them, they are filled to the brim with seeing, hearing, touching, tasting and it is overwhelming for them.

For my beautiful boy, the world is often too much and he is too much in it. He is easily frustrated and monumentally impatient.  Whenever there are any changes in the house, from the furniture to our routines, he is the first to notice and the first to object.  He is a visual learner and a stubborn one. If he doesn’t want to cooperate it is a real challenge to change his mind. He likes to repeat phrases from TV and commercials, he has an unending interest in Star Wars, Godzilla and any and all superheroes. He likes to wear costumes and he is not afraid to talk to anyone about anything.

I used to want to change him, make him more accepted, acceptable, less annoying, smaller! The struggle was exhausting.   Now, I try to welcome his “obsessions” and his stubborness, within reason.  And life is much more “normal” now that we’ve expanded what that means to us. In our home it’s normal to get into your pjs as soon as you get home. It’s normal to wear one mitten on your left hand for two weeks, no questions asked. It is normal to quote entire scenes from “Star Wars” and to never tire of a peanut butter and honey sandwich for lunch.

  Some of these “normal” habits have faded away over the years and I actually miss them. For instance, Zach used to say “bless you” when any of us passed gas. He used to insist that I sing a goodnight song without fail at bedtime. He also used to ask bearded men if they were George Lucas and he was positive the little girl next door was Wendy from Peter Pan.  I miss those things. 

But I can’t say I miss Zach leading a “normal” life, not anymore.  Somehow, somewhere it was decided that he should have an extraordinary life and we, his family, are along for the ride.

Raising Boys – Learning to Not Ask Why

Missing forks?

Missing forks?

I heard a comedian once compare raising children to living with dwarves on acid. I have to say it really feels like that sometimes. Or maybe boys are just more unruly, uncivilized, strange. They do weird things while they are trippin’ on growing up. I’ve learned to accept the weirdness, but I haven’t learned to accept it without wanting to know why. I am tortured on a day-to-day basis by the tiniest, strangest mysteries.  

I was thinking of this yesterday while I was cleaning the house. I have a cute little fake book/box I bought for our family room to keep (or I should say hide) the remote inside. So, after fishing it out of the sofa cushions, I went to replace it in the secret book and what do I find inside?  My eldest son’s toenails.  I know they belong to him since he asked me where the clippers were yesterday while lounging in front of the tube.

I could have asked him, Why? But I have learned from many such fruitless attempts that this route is pointless. I always get the same pat response: “I don’t know.”  Just once I would like a real answer, even a weird one. I can imagine several he could give me, such as: he didn’t want to get up, the box was there, he had a handful of toenails he wished to be rid of, no one was looking or he was pretending the clippings were pirate booty.

I would welcome these explantions because I am ever curious to the motives. There are many mysteries surrounding my children and I wish they would give me the answers. I think it would put my mind at peace if I could just know why.

My dear boys Why do you put the empty milk carton back in the fridge? Why collect Q-tip fuzz in your desk drawer? Why pee in the waste basket? Why melt crayons in the toaster? Why are there always Slim Jim wrappers in your hamper?

But, like many of the larger mysteries in life (Stonehenge, the Pyramids, why we still vote on Tuesdays) I think I shall never find the answers. And I will have to learn to live with that.

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