Hide and Seek… and Thoughts of Divorce

My youngest son doesn’t answer to his name.

Or at least, now he only occasionally answers to his name.  We keep working on it.  It goes something like this:

Mommy is in the kitchen, washing dishes, while her son, X, is playing in the living room (she thinks).  Mommy looks up from her suds and notices that X does not appear to be in the living room.  She calls “X!” then listens.  No answer.  She calls again “X!” and cocks her head, straining to hear any movement, rustle of clothing, footsteps, anything to indicate that another living soul is in the house.  When she hears nothing, she checks behind furniture, the bathroom, then goes to the front door and calls again “X!”.  When nothing responds she goes to the back door and again calls “X!”  In a bit of a panic she runs out into the back yard and again calls “X! X!  Where are you?!?!”  The neighbors come out of their houses (Mommy has a good set of pipes on her – she could signal in fishing boats in a dense fog) and offer to help look for X.  Mommy goes back into the house and, a bit shaky at this point, calls one more time “X!  X!  What do you do when Mommy calls ‘X!’?”

“Here I am Mommy,” he calmly says while crawling out from behind the sofa.

Now – I know there are smug parents out there thinking “Why doesn’t this Dodo-brain just say “X!”   “X!”  “What do you say when Mommy calls X?” the first time?  You see… this would make sense.  But remember… this is AutismWorld we’re talking about – where rules are changing and the only consistency is inconsistency (it is a game that will likely not be marketed by Hasbro or Mattel anytime soon).  Apparently we first must call and call his name repeatedly, then ask “What do you say when Mommy calls X?” (requirement is that this phrase is usually only valid when we begin to sound hysterical) before he will respond to this latter phrase.  

This was recently tested during a holiday shopping trip to WalMart where first my husband disappeared somewhere around the pharmacy section (without alerting me as to where he was going), then my older son wandered off near the bike rack (“Stay in this section or come to us in Toys when you’re done,” I told him), and then my Autistic son disappeared while I was checking in what country the supposedly lead-free toys were made.  I started calling out his name.  And let me tell you, after the first unanswered calls – those “pipes” kicked in.  “X!  X!  What do you say when Mommy calls X?” 

My older son came running.  Five other Mommies offered to help us find my younger son.  After 5 minutes of searching the management shut the store exits down (my apologies to the WalMart shoppers out there).  The tears started to spill down my cheeks as true panic kicked in.  We jogged down aisles calling “X!  X!  What do you do when Mommy calls ‘X!’?”  Employees checked restrooms.  Pages flew across the rafters.  And then, another 10 minutes later, an employee ran up to me and said “I think we found him!” She led me to an aisle where my son was happily sitting in a corner next to some paint rollers (one aisle away from the toy section).  He looked up and said “Here I am, Mommy!”  I held him until my shaking stopped.  After a while, we stood up and started to walk toward the exit – all thoughts of Christmas shopping having fled.  That’s when my husband strolled up.  “We found him!” I said with a weak grin.  “Oh, that was you that caused that ruckus?” he asked.

No wonder there is such a high divorce rate in AutismWorld.

My son’s behavior reminds me of one of those funny stories that circulates occasionally on the internet.  I’ve copied it below for you:

Why Parents Drink:
The boss wondered why one of his most valued employees had not phoned in sick one day. Having an urgent problem with one of the main computers, he dialed the employee’s home phone number and was greeted with a child’s whisper.
“Hello”
“Is your daddy home ?” he asked
“Yes”, whispered the small voice
“May I speak with him?”
The child whispered, “No”
Suprised and wanting to talk with an adult, the boss asked, “Is your Mommy there?”
“Yes”
“May I speak with her?” Again the small boice whispered, “No”
Hoping there was someone with whom he could leave a message, the boss asked,
“Is anyone else there?” “Yes”, whispered the child, “a policeman”
“May I speak with the policeman?” “No, he’s busy” whispered the child
“Busy doing what?” “Talking to Daddy and Mommy and the Fireman” came the whispered voice.
Growing more worried as he heard a loud noise in the background through the ear piece on the phone, the boss asked, “What is that noise?” “A helicopter”, answered the whispering voice.
“What is going on there?” demanded the boss, now truly apprehensive.
Again, whispering, the child answered, “The search team just landed a helicopter.”
Alarmed, concerned and a little frustrated the boss asked, “What are they searching for?”
Still whispering, the young voice replied with a giggle, “ME”

Peace to you all, and may you always find what you’re looking for!

Wii Play

I never thought we’d get a gaming system (lesson #1226 – never say never!) but we found ourselves last year asking each other if it might be a good time to get one.  We shopped for a game system, weighed the pros and cons, looked at prices and games.  We got more excited as we shopped.  I still felt guilty about the cost and the idea that we were in some way encouraging mindless zombie activities.  We tried to justify it all by considering how everyone in the family might enjoy it.  We finally settled on a Wii …and we love it!

You see, my Typical son and husband are very “into” sports. My Autism son is not (frankly, neither am I).  We thought that, perhaps, his lack of coordination just kept him from enjoying sports.  We thought that a Wii, with the more physical interaction, could add to our Autism son’s sensory diet and motor skill development, as well as give him a way to play sports that didn’t require great control of a ball, actual running, etc.  We rationalized that we’d save on remodeling costs since our Typical son could play this and not tear the house apart when kept in on rainy days.  I rationalized that I might could use it to spice up my exercise routine (that is, if I actually had one).

We took the plunge and bought the Wii.  We brought it home and placed the shiny box on the coffee table.  My Typical son rushed to rip off the plastic wrap, while my younger son danced about, soaking up the excitement.  I read the directions and we hooked up all of the cables and cords.  The anticipation of that first game was thrilling.  We took the controls in hand and played what ended up being a really pathetic game of doubles tennis – but we laughed and yelled and got our heart rates up.  We all enjoyed it very much, all except for my Autism son, who tried swinging the “racket” once and then refused to play any more.  Since then we’ve played and added to our game library, but my Autism son hasn’t gotten into the sports games at all – not tennis, not golf, not even bowling (which he sometimes enjoys in real life).  We felt a bit dismayed.  I felt guilty (gasp!  Just the thing I warn others about and here I was succumbing to it once again!) for purchasing something that left one of us out.

Then, surprise surprise, my Typical son brought home a quirky game called Cooking Mama Cookoff!  My Autism son, a bit wary at first, soon was drawn to this strange and silly game where he pretends to chop, peel, stir, crack eggs, and create gourmet dishes. He never wants to help me cook in the kitchen (of course not!), but he loves this game, and we get such a kick out of playing it with him. I figure, not only does it entertain, but he practices controlling repetitive “small” motions, just like you would when chopping or slicing vegetables (that rationalization again :)).

Now I look at this game system with a sense of satisfaction.  We have found another way to include everyone in the family.  We each have our preferred games but we can all play together.  Wii scored!  Wii play!

Now we have a new challenge – when grocery shopping my son refuses to leave until we buy ink for the “Squid in Ink Sauce”.  Sigh

Advice for Parents

I recently joined an on-line group called FoggyRock.   Their tag-line is “When autism is your mountain, you will never have to climb alone”.  What a great tag-line! (check out the link in the sidebar)

Within FoggyRock, I joined a group for people in my state, and saw a question posted.  Basically it was asking what one piece of advice would parents of children with Autism give to a parent for a child newly diagnosed.

WOW!  What a question.   What a really difficult question.  One piece?  Just one piece?  I thought long and hard about that one.  What could I offer?  What did I wish someone would have told me when we first started on this journey?  What advice has most helped me over the years?

And I found I couldn’t think of one thing that would be the most important thing for all people.  I figured each parent comes from their own unique place, and with so many differences between kids (and all of the inconsistencies within each kid), differences between families, differences between support structures available, and differences between diagnoses, there can not be one thing that will be most helpful for everyone.  But… maybe this person was asking for one thing because, like most of us, they felt overwhelmed with the diagnosis and wanted desperately to prioritize.

I get that.  I remember that.

So what would I offer?  Some of the gems in my treasure chest would include “allow yourself to grieve because this is a normal response and it will help you eventually move toward acceptance” and “get moving on intervention as early as you possibly can – don’t wait for a cure to be announced” and “accept offers to babysit because you need it” and “Valium can be your friend” 🙂 but when it comes down to it, there were really two things that I wanted most to tell parents and anyone who loves a person who has been diagnosed.  These two things are the most important and influential pieces of advice I wish someone had told me way back when.  They are validating, they are constructive, and they are, in my opinion, liberating.

Most important advice #1 –

Don’t sacrifice your entire life or your family’s life to the Autism beast.  You MUST take care of yourself – it is actually OK to take a break and do something that has nothing to do with Autism once in a while.  You also need to not let the beast make all your family’s decisions.  Make decisions in the context of the family (whether that is just you and your child or includes a spouse, other children, grandparents, etc.). You only have x number of resources for your family (money, food, time, car, energy, etc.) and you have to figure out how to budget that out across the entire family – so every person gets a reasonable amount of resources depending upon what they need and what you have to give and relative to what the others need. I see so many families sacrifice the marriage or sacrifice other kids so that they can throw all of their resources at fighting the Autism beast. And while they may make great progress against the beast, I am not sure (in some cases) it was worth what they sacrificed. That is not to say that we shouldn’t make sacrifices – we all have to make sacrifices, just that priorities need to be set in favor of the family, rather than just the child with the disability. 

There are so many approaches and therapies – I cannot try them all and some are cost-prohibitive to even try much less sustain. So I try to think of it along the lines of a resource budget – it helps me feel less guilty about diverting a resource to pay for my other child’s baseball league or my church fund raiser and helps us live a (slightly) more balanced life than we are tempted to live when we live with Autism.

Most important advice #2 –

Guilt – No one should let themselves feel guilty because they may have “done something wrong” in pregnancy or they think they followed poor advice or because they didn’t know something earlier, or they aren’t adopting the latest x therapy/drug/treatment, etc etc etc.  We can destroy our lives this way and it just isn’t healthy.  We are human.  Whatever your religious convictions (or not) we are not created (or randomly born, whatever) as perfect beings.  We’re just not.  We’re not mind-readers, we’re not infallible, and while some of us specialize in certain skills (like Drs or therapists) none of us can be all things that our child needs.  It is just impossible, so we need to not hold ourselves up to an impossible standard.  We just do the best we can in this crazy, confusing, inconsistent world.  So my advice is to cut yourself some slack and just take it day by day.  Do the best you can but don’t beat yourself up for not getting it right every time, every day. 

And – don’t feel guilty about feeling guilty once in a while, either.  You are human (remember that?) and this is normal, too.  Just do your best to not wallow in it.  Try again tomorrow and work with what you’ve got! 🙂

Peace to all out there!

Size Matters… in Valentines

My son with Autism, my youngest, has quite a personality.  With or without Autism, God blessed him with a creative soul, and with the Autism what I think would already have been a unique perspective is perhaps spun around even more.  His perspective is, shall we say, unique.

Take Valentines Day.. or rather… the preparations for it.

My son, like most children in the U.S., is tasked with providing valentines for each of his classmates.  He also was assigned this week to be the class’s “Star Student”.  This is a program where each child gets a week to be the classroom’s “star”–they make and post a poster all about them, their likes and dislikes, etc.  They also have the opportunity to bring in show and tell every day [the only time they are allowed to do this during the year] and other fun “star” activities.  We had to prepare the Valentines and the “star” poster on the same day.  Because of this, I think, my son decided to make his poster a Valentine’s Poster all about him and his loves.

Important point here.  My son, more than just about anything else (even more than ice cream, which is saying something) loves animals.  I mean he LOVES animals.  He obsesses about animals.  Go Diego Go! Animal Planet, the Zoo, the Aquarium… he is there, mind, body, and spirit.  He wants to be a rhinocerous when he grows up, and then a tiger, a Cyclops, an Ibex, a pirate parrot, a beluga whale, and then maybe a kitty (so he can curl up in my lap and purr all he wants).  I am not sure how he will accomplish all of this, but he has plans for them all.

One of his favorite activities is creating tiny little animals out of bits of foam, trash, tape, and his imagination.  It is wonderful how he uses color, how he slots pieces together (like fine Amish furniture), the mechanics of it all is fascinating.  And he plays with these animals.  He assigns them likes and dislikes and personalities and sometimes gives them a voice…  He loves them.  We find these animals everywhere in our home, our car, in my purse, in pockets, in the lint screen in the dryer, between his pillow case and his pillow… everywhere.  So naturally they would be part of his poster.

His poster board was green, since this is his favorite color, but the animals had to be “valentines color” which is red.  So he cut out the profile of a triceratops, put it on the table and examined it.  Then he carefully made a three-dimentional puma, and then, still not satisfied, looked around for a bigger piece of red foam.

“What are you doing, hon?” I asked.

“I need to make a Valentine animal for my poster,” he answered as he rummaged around on the table of art supplies and foam scraps.

“What about this Triceratops?  Isn’t he a good Valentine animal?” I was hoping he’d go along with this, thinking that it would be easier to paste onto the poster than the puma.

“No!  That is a dinosaur!  A dinosaur is NOT a Valentine animal.  He has horns.  A Valentine animal is red and…” he paused to sieze a large piece of red foam he had spied underneath the construction paper, “big because he is a lovey.”  (Lovey is a word we use to describe someone who likes to be cuddled – usually describing me or my son, since we love to cuddle with each other – he gets the sensory input and I get the cuddles – it is an excellent deal)

Hmmm… I thought.  Big, red, and a lovey?  I couldn’t imagine where he was going with this.  What animal did he think best represented Valentine’s Day and loveys?  Something big?  Should I be worried?

He began to cut the foam.  His tongue peeped out of the side of his mouth as he concentrated on his creation.  A long, slightly curving line appeared, then he cut in angles, then another long sloping line…

I glanced away for a moment and when I looked back… the Valentine Sperm Whale had made its appearance.

My son held it up for my inspection.  “See Mommy?  See?  What Valentine animal is this?” he grinned.

“Is that a Valentine Sperm Whale?  He is handsome.”  I kissed the top of his head as he proudly nodded agreement.

And then, I had to ask “Why is the Sperm Whale the Valentine animal?”

He looked up at me as if I were a tall, but sadly slow child.  He took a deep breath and explained in his best imitation of a teacher’s lecture voice “Sperm Whales are big whales and they hold alot of love and they take care of their babies and so that is the best kind of Valentines animal you can make.”  He smiled “and he is red.  Red is a Valentines color.” 

Well.  That just explains it all, doesn’t it? 

My precious lovey.

Neurotypical Syndrome?

A different perspective…

The “Institute For the Study of the Neurologically Typical” is an outrageous website created by a gentleman who was diagnosed with Autism in his adulthood and was, in his own words, “outraged” at how he and others with the Autism diagnosis are portrayed in various literature and studies.  The site is a sarcastic (and some might say bitter) parody that turns the tables on “typical” folk to give us a different perspective.  It comes complete with theories, statistics, papers, and (I particularly enjoyed this one) an online Neurotypical Screening Test.  Check it out – and enjoy a laugh (perhaps at your own expense)!

http://isnt.autistics.org/

Superbowl Sunday Ad Shows We’re Not As “Abled” As We Think

There’s a new kind of ad planned for Superbowl Sunday.

PepsiCo has a commercial that is scheduled to be aired on Superbowl Sunday and you can get a peek at it on YouTube (link below).  This ad turns the tables on us “typically-abled” folk and plays on a joke common in the deaf community.  If you have a sense of humor, you’ll really like this one.  Thanks, PepsiCo!!! 

http://www.youtube.com/watch?v=ffrq6cUoE5A&feature=related