Autism or Austentism?

Our family lives with obsession.  We have a child with Autism–enough said, right?  He is obsessed with animals and tiny tiny things… like tiny beads, tiny pieces of confetti, or, well, tiny animals. 

We all have our obsessions, I have found.  Each of us, in our turn, has something that “turns us on” to the point where we can, if we let it, perseverate and obsess and just plain wallow in our chosen joy.

My husband, for instance, like most Southern men, is obsessed with Football.  My older son is obsessed with sports and SportsCenter on ESPN.  My younger son, as I mentioned, finds his joy in animals and tiny things.

And me?  Sigh…  I am not above obsession.  I have to admit that I too am obsessed.

I am obsessed with Jane Autsen. 

Persuasion, Mansfield Park, Sense and Sensibility, Pride and Prejudice, Emma, and Northanger Abby… Jane is my escape.  Through her writings she allows me to relive the decisions made in my early twenties.  She allows me to explore feelings and rationalizations and moral questions… the senses and sensibilities, I guess.  I recently took joy in reading and re-reading Pride and Prejudice to the point where I have been pondering my own parallels to Mr. Darcy and Elizabeth and even, I must add, to Mrs. Bennet.  I even added a “Which Jane Austen Character Are You” quiz on my facebook page.  This is scary. 

I believe the official diagnosis is that I am a “Janeite”.  But that seems such a plain-sounding diagnosis.  I am starting to think of it as “Austentism”.

Just how far does this go?  Well, let’s see.  I have been faithfully following the recent US Masterpiece Theater Jane Austen Revival on PBS.  I have watched the interviews with the producer and actors on PBS.org.  I took the “which one is your man?” quiz, also on PBS.org (not telling which one I prefer :)).  I have watched just about all of the movies ever made based upon her works (my favorite?  The 1995 BBC version of Pride and Prejudice with Colin Firth and Jennifer Ehle, of course, but the Bridget Jones’ Diary series is also a favorite as a “loose translation”).  I just rented “Becoming Jane” and loved the theory it presented about how Miss Jane Austen may have gained the life experience reflected in her works (such a fresh yet plausible story).  I have her books and books by authors who wrote sequels and books that tell the stories from an others’ (usually the man’s) point of view.  I have the soundtrack to the 1995 BBC version of Pride and Prejudice on my iPod.  I’ve read through (and reference) www.Pemberly.com  quite often (see link in the sidebar).  I’ve looked up patterns for the dresses and accessories that were worn and referenced in her books.  I even have a book titled “Jane Austen’s Book on Manners” and have thought about getting a cookbook that is now out with recipes for things that are mentioned in her books.   Like a drug addiction, I crave them and want more. 

Forget scary – now that I am writing this all down I realize that my addiction is… REALLY scary!

If my powers of concentration were better, I’d be able to ignore the dishes (ok, I am already pretty good at ignoring the dishes), and the kids’ homework, and the latest report demand from my boss, and just submerge myself in my passion.  Perhaps that only comes in the most advanced stages of obsession… or in Autism…

Did this come on after prolonged use of Teflon coated pans heated above 450 degrees?  Vaccinations?  Mercury poisoning?  A genetic predisposition?

Can I be cured through diet?  Chelation?  ABA?  Hyperbaric Oxygen Therapy?  Vitamins? 

I hope not.  I’m having too much fun!  🙂

Church Musings

My younger son is so verbal.

Sometimes we wonder why we ever taught him to speak (and then – why he speaks so LOUDLY). 

During the sermon while in church he pipes up with important questions like – “Mommy, why do your boobs hang out your chest?” and “Why is Pastor so old?”

As we walk up for communion/blessings he’ll ask “Why do you get snacks and I don’t?” and, with wide eyes, referring to the communion wine, “Is that real BLOOD in there?”

Our favorite was when, during the sermon he called up to the pastor… “Are you done talking yet?”

A Budding Novelist

My youngest has had a school assignment to write a story.  This will, in a few weeks, be “published” in book form.  The little authors will have a class party where the parents are invited and the authors read their stories in front of everyone.

We’ll cross the reading-out-loud-in-front-of-everyone bridge when we get there.  We had to get through writing the story first.

Now let me make this clear up front.  My son has no problem making up stories.  He’s actually quite good at coming up with ideas and events to put in stories – quite an active imagination.  But we often are left wondering where he gets his, shall we call it, inspiration.  Sometimes his stories even “inspire” questions from others about our home life – sometimes funny questions, sometimes not so funny.

We drafted his story this last week.  He would get going telling his story and I would type out his words.  I asked a few questions to get some more detail and we ended up with something like this…  There’s this Crocodile whose dinosaur friends are all dead, his parents are dead (this is where it turns into a Disney classic), he doesn’t know what to eat but does know what can eat him…  (okaaaay…)

He moves to a new lake where there are no Raccoons, Snakes, or Birds… and is trained on the Tuba and plays in victory parades.  (Tuba?  Where does this come from?  We don’t know anyone who plays the Tuba… Right after my younger son says this about the parade we have to shush our older son who tries to point out that crocodiles do not have the lip structure to play horn instruments.  After all, we tell him, we’re being creative.)

Eventually the Crocodile (whose name is actually “Crocodile” in case you were wondering) finds his parents (who aren’t dead after all, they just moved to a different lake – which turns this from a Disney movie to a twisted and dark commentary on child neglect, but thank God we’re… I mean they’re… still alive) and all live happily ever after.

I don’t want to change his story (although we did make some gentle suggestions), but I am curious as to what sort of looks we’ll get as my precious lovey (who, for the record, we cherish and love very much AND who we’ve never left at a lake, never starved, and always brought with us when we moved to a new house) reads his story to the rest of the class.  Should we expect a call from social services…

Or negotiate a contract with Disney?

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/

The Slumber Party List

My older son, 9 yrs old, wanted to have a sleep-over party with his two neighborhood buddies.  He asked us about it over dinner one evening and we agreed that he could ask them for the upcoming Friday night.  This would be the second time our son would have a friend sleep over and he was thrilled.  While he has two boys that he likes to play with regularly in our neighborhood, he doesn’t have a strong social network, due largely to the various demands his younger brother places on our time and attention and the fact that most little boys in my son’s peer group don’t see his little brother as someone cool to associate with.  It usually isn’t a big issue – it just is what it is. 

As we discussed the sleep over, my younger son (with Autism) was wildly enthusiastic about the idea and immediately assumed he would be co-host, to my older son’s dismay. 

Our older son worried that his little brother, with his strange speech and odd behaviors, would make the evening “uncool” and that his buddies wouldn’t want to spend time with this weird little brother.  He worried that his little brother would do something to embarrass him.  We had a little talk with him and asked him to go along with his little brother’s excitement and just trust that the event would go off without any issues.  Plus, we added, if it went well we would be happy to host such events much more often.  With that carrot dangled in front of him, he happily agreed (with only a trace of trepidation lingering in his eyes) and we started to call his friends’ parents.

Our younger son, still in party planning mode, asked for help in coming up with a party “list”.  He dictated the following (in order):

1.  Jokes

2.  Pizza

3.  Stories

As with all highly important strategic family documents, we read the list aloud and tacked it on the refrigerator for reference.  My older son rolled his eyes and announced that this was “a SLEEPOVERFORGOSHSAKES and cool dudes (where on earth does he get these terms?) don’t have lists, they just do fun stuff like play the Wii and eat pizza and stuff.”  Younger son’s eyes filled with tears and he shot back “You goof brain!”   Oldest son cried out “But its dumb!  You’re a potato head!”

I first reminded everyone that we do not call each other names, then comforted my youngest with a “we’ll see how it goes and make sure we keep this list.  It is a good list and we cannot forget the pizza!” while shooting my oldest a look that warned him to keep his darned mouth shut because we respect each others’ ideas and if he doesn’t there will be no sleepover list to concern himself with as there would be no sleepover and he’d better not forget that I control the ice cream distribution in this house young man…

So anyway… the big evening came and two little boys arrived, pyjamas and sleeping bags in hand.  Younger son excitedly tore his list off the refrigerator, said “Here’s a list of what we need to do for the party!” and presented it to one of the boys, who glanced at the list, then made a face at my older son.  Younger son tried to present the list to the other boy who just ignored him and turned away (I had to restrain myself from swooping in).  Older son distracted them both by challenging them to a game of Guitar Hero (a Wii game where you “play” the guitar in a rock band – one of the boys brought it with him). 

Soon the strains of “Slow Ride” began (the first of about 183 repetitions of this song) and the three boys happily took turns while my youngest, quickly forgetting the slight, adopted the role of groupie by cheering them on from his sleeping bag.

Later, we ordered pizza and the boys attacked it as if they hadn’t eaten in days.  They happily munched and recounted stories from Guitar Hero (“remember when I missed that note and there was all that booing?”), questions about Pro-football (“who is your favorite… the Bears or the Colts?” note we’re in Atlanta and the Falcons weren’t even mentioned – darn that Michael Vick), and general 9 year old boy potty humor comments (“THHFIIPHPHFFFF“, “Hey!  You farted!”, “Gross!”, “belch”, “I saw a dog with diarrhea…”” ).  It was… fascinating… and our youngest, while not adding alot of content, continued his groupie role by faithfully chortling along with the others and adding his own trick – showing everyone the chewed up pizza in his mouth before swallowing (I am assured that this is a totally normal behavior, although it understandably doesn’t appear in any of the standardized testing our Developmental Pediatrician has used to date).

After pizza the boys went back to Guitar Hero (more “Slow Rider”) and then put in a movie.  All seemed to be going well, we reassured ourselves.   This is easy – we can do this – not a problem – we’re cool – the house is still standing, and no-one is crying – we’re good).  After the movie they went back to some more Slow Ride… I mean, Guitar Hero.  Our youngest wrapped up in his sleeping bag and fell asleep.  Another boy looked heavy eyed and ready for his own sleeping bag.  I suggested it was time for the slumber part of the party, but the boys rallied and loudly declared that they were going to stay up until midnight!  They were dudes that stayed up late!  They were just getting started partying! (and one went so far as to proclaim that he stayed up until after mid-night every night of the week!)  I smiled and told them that they could stay up but needed to shut down the Guitar Hero and turn off the TV since the rest of us were going to bed.  They said “no problem” and “Good night Mrs. X” and “this is a cool party, Mrs. X!” and “What are we having for breakfast?”  As they scooted into their sleeping bags, I told them we would deal with breakfast in the morning, wished them good night, and climbed the stairs. 

As I got to the top, I paused to listen to their chatter below.

“So what can we do now?” yawned one.

     “I don’t know”

          “There’s the list”

     “Let’s look at the list”

         “Here it is.  It says Jokes first”

“We did that at dinner”

         “Then Pizza”

    “We did that at dinner too”

         “Then Stories”

“That was the movie”

    “Maybe we can tell more Jokes”

At that they began with “Knock Knock”,  “Who’s there?”, “THFIIIIIPHPHPFFFF”,  “GROSS!”, “Do it again!”

I smiled.  What a good list.

Trapped in a diagnosis?

This was forwarded to me  in one of the online discussion groups to which I belong (how valuable these are!) and thought it was just too good to not share.  If you’ve ever felt trapped in a diagnosis, particularly with your lovely and yet developing child, this is a good one to bolster your spirit.

Forget the Diagnosis (By Jene Aviram)

Autism! PDD-NOS! Aspergers syndrome! ADHD! High functioning! Low functioning! Delayed! Hearing these words about your child can be crushing. They can devastate you to your very core. The good news is THEY DON’T HAVE TO! 

Let me tell you why…It doesn’t matter. That’s right. It simply doesn’t matter. If you want to really help your child then read on. I’m serious. Don’t be like the thousands who wish they had “lived” this concept sooner.

Pretend for a moment you have a newborn. He is simply perfect. By the time he is two years old, his fingers are so long, they look strange. You go to a renowned physician and ask “What’s wrong with my child? Why are his fingers so long?”. The physician smiles and says “Your child has a condition called spindle fingers. He has a natural gift for playing musical instruments. Many dream of having this talent”. You’re absolutely thrilled and can’t wait to share the news. You rush home but on the way you stop to buy a toy xylophone, piano, drum set and flute. You set them out on the floor when you get home and you watch proudly as your toddler strums each one of them. You don’t care that everyone else thinks it just sounds like noise. You have a budding musician on your hands and he’s practicing!

As the months go by you encourage your child to play instruments. He gets a little older and expresses his preference for the piano. You take him to piano lessons, listen to famous piano players and perhaps even go to concerts. You explain to your son that his fingers are long because he is talented at playing the piano. Your son plays the piano beautifully. He is proud of his fingers and his talent. You are proud of your son.

You run into the physician a few years later. You tell him proudly about your child’s piano skills. He smiles broadly and says “I made it all up. There is no condition called spindle fingers”. “What?” you shriek “that’s impossible. My child is an excellent player”. “Of course he is” says the physician “It’s called belief. You believed in your child’s fingers. You believed in his talent. You encouraged him. It didn’t matter how many mistakes he made. You hardly heard them because you knew he was on the path to greatness. Your son felt your belief. He saw it in your eyes. He felt it course through his being. It inspired him. Every time he looked at his long fingers he thought about his talent. He felt proud of himself. He knew he could do it. Your unwavering faith inspired him to be the best he can be”.

My advice to you is this. Forget about the boxes and the labels. Ignore the judgments. Your child is fascinating. Your child is a unique and wonderful being who is incredibly special. Give him or her the tools. Encourage them on their journey. Never lose faith in them. Stand by their side. Teach them as much as you can. Watch in delight as they soar far beyond everyone’s expectations. Everyone’s except yours and all those who joined your belief along the way!

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Thanks Jene for articulating something that rings true for parents everywhere!