It's Just a Wednesday

For the rest of the world, today is World Autism Awareness Day.  
For us, it's Wednesday.  Because every day is Autism Awareness Day.  There is never a day when we are not autistic.  There is never a day when we are not aware.
I certainly hope you are not feeling sorry for us when you read this...
Because we are far, VERY far from feeling sorry for ourselves.
Our Lucas is more.  He is so much more than that word.  So much more than a diagnosis.  SO much more than a label.  
He is brilliant.  He is kind.  He is fierce.  He is gentle.  He is silly.  
But, yes.  He is also Autistic.
Yup.
And I will not pretend that Autism does not have challenges.
But Autism doesn't define us.
Awesomeness defines us.  But not Autism.
Here are a few photos of Awesomeness.  Or Autism.  Whatever you want to call it.
Here is Lucas struggling with his fine motor skills.

 Here he is having difficulty relating to his peers.  It's so hard for him to connect with other children.

 Imaganitive play is a real struggle.

Sensory issues.

 If only he were more aware of other people...  

 He really can't get out of his comfort zone and try new things.  Just won't take risks...

 Here he is.  Autistic kids don't make eye contact, ya know.

Here is an Autistic kid...  They really don't do well in crowds.  

Or...  

That's MY AMAZING BOY.  On stage all alone.  In front of a hundred people.  Playing music.

When was the last time you did that?

He's doing just what his Autistic, AWESOME little self always does.  

Kicking you-know-what and taking names.

Happy Wednesday.

Hulk Smash

Lucas's birthday is next weekend.  (eight years old!!!  zoinks!)  Yesterday we took the boys to the toy store so that Lucas could look around and decide which of the cleverly-marketed-plastic-items-built-by- underpaid-workers-in-foreign-environmentally-polluting-factories he wishes to consume. toys he might like for his birthday.  I completely expected him to find the aisle of animal figures or books and camp out.  

He blew past those aisles with hardly a glance.  

wha???

He didn't really seem interested in anything (except for the Baby Einstein videos.  The boy has a serious obsession.)

Until we hit the Super Hero action figure aisle.  (AKA barbies for dudes.)

Then, Lucas went wild.  Crazy.  Koo-koo for Coa-Coa-Puffs.  Chris and I just kept looking at each other with wide eyes.  The Barbies for Dudes aisle Super Hero Action Figure aisle was the last we went down in the entire store (because a little girl tossed her cookies in that aisle, right in front of Captain America.  I think she maybe finds him smug.  I do.)  So we had to wait for that to get cleaned up.  

And then...

Then, it was Super Hero Blissfest 2013.

I now know that Lucas prefers Marvel to DC Comics.  Something that I didn't know until yesterday.  Interesting.

Hulk smash.  (My new favorite line.  I plan to use it liberally.)

He was absolutely giddy.  Lined them all up.  (Because he's Lucas.  And that's how he rolls.  In neat, tidy lines.  Or sometimes, neatly grouped according to animal kingdom, phylum, class and order.  But we're talking Dude Barbies, here.  Not animals.  Keep up.)

It's pretty exciting to see Lucas branch out a bit from his animal and Williams-Sonoma catalogue comfort zone.

And he wants to be Iron Man for Halloween.

Iron Man.

Iron Freaking Man.

Not a pirate like he has been for past two years, and what I assumed he would be for the rest of his life, forever and ever amen.  (Because that's what Garfield and Odie dress up as in the critically acclaimed 1985 smash hit, Garfield's Halloween Special.  If it's good enough for Garfield, it is good enough for Lucas.)

What the what???

Not a pirate???

Hulk smash, Gentle Reader.

Hulk.  Smash.

Book Worm

All kids get into a little bit trouble at school now and then, right?  Some cheat on tests.  Some talk too much during class (ummm, Mariah.).  But not Lucas.  He's not taking anybody's milk money.  No.  Lately Lucas has been getting in trouble for sneaking too many books to school.  

This is pretty typical Lucas reading material.  Three cookbooks, a Martha Stewart cakes and cupcakes special edition, two animal encyclopedias, and one children's book.  (The cookbooks, by the by, he saves up all of his tooth fairy and birthday money to buy.  Nobody appreciates the pastry arts like my boy.)  

He hides them in his backpack.  All twenty five pounds of them.  He has a little book bag that he takes every day, and he is allowed to take two books from home with him every day.  Two.  Two.  But sometimes Mommy gets busy with the four freaking children I have to wrestle into the van by eight in the morning that she forgets to check his book bag.  Because he's like a prison inmate and needs to be patted down for illegal paraphernalia every time he leaves the house.  Sometimes I have to check his t shirts too.   Because he'll try and sneak out of the van with a stash of Williams-Sonoma catalogues under his shirt or down his extra slim flat fronted cargo pants.

I know you're feelin' me, Gentle Reader.  You kid does this exact thing.  Right?

true love...

Holland is Pretty Great

Woo-ee, people.  Yesterday.

Dang.

Seriously.  I cried all dad-gum day.

Going public with Lucas's autism was absolutely the right thing to do.  But writing yesterday's post was not easy for me.  Ripping my heart out of my chest and laying it out on the table for everyone to see.  I was so touched by the outpouring of love and support that we received.  It was really overwhelming.  Thank you so much for all of your messages, emails, and phone calls.  Overwhelming.  Thank you.  Thank you.  Thank you.

Someone sent this to me a while back, and I think it captures so perfectly the journey of having a special needs child.  I didn't write it, but I really wish I did.

........................................................................................................................

Welcome to Holland

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

Written by Emily Perl Kingsley (in 1987) 

..................................................................................................

photo from Holland...  they have a Williams-Sonoma there.

Coming Out of the Closet: The "A" Word

Being a parent...  It's a crazy hard job.  Like all parents, my greatest desire is to be a good mother to my children.  I fall short.  A lot.  Sometimes it's just so hard to know what to do.  Sometimes you know, and then you change your mind.  And then you change it again.

To cut right to the point...

Our oldest son, Lucas, has autism.  For some of you, this news will come as a big surprise. For others, those of you who have spent much time around him, not so much.  He was diagnosed when he was three and a half, right before Max's first birthday.

Before I go any further, I want to be very, very clear about something.  If you take anything away from this blog post today, I want it to be this.

We did not wait four years to come public about Lucas's autism because we are ashamed.

Not in any way.  Not when he was three and a half, and certainly not now.

We were desperate to protect him.  Protect him from an ignorant world.  There are family members and very good friends, people that I love dearly who are learning this news for the first time.  Honestly, I told my own father only a few months ago.  We didn't want him pitied, or talked down to.  We wanted to do everything in our power to avoid a label on our precious boy.  We didn't want "The A Word" to define him.  It was very important to us that Lucas be treated by our friends and family like every other kid.  But the truth is, Lucas isn't like every other kid.  He is different in ways that sometimes fill us with pride.  He is different in ways that also occasionally bring us to our knees brokenhearted.  The broken heart days don't come very often anymore.  I'm very thankful for that.  I think it's partly because Lucas isn't as hard as he was a few years ago.  But it is also partly because we've embraced who he is, and not who we thought we wanted him to be.  There is a very fine line, in parenting all children I think, between seeing your child's weaknesses and trying to help them overcome; and accepting your child for who they are.  Seeing the beautiful little person that they are right now.  Not who they will be someday, if only you all work hard enough.  That took some time for me.  And it was not always an easy journey.

Autism is a spectrum disorder.  You may have heard the phrase, On the spectrum.  I do not claim to be an autism expert, I'm only a Lucas expert.  You can learn more about autism spectrum disorder (ASD) at the Autism Speaks website.  I'm not writing this to educate you about autism.  Just to educate you about us.  About Lucas.  And please, please.  Do not think you know about ASD because you've seen the movie Rain Man.  Seriously.

So, you are now in Lucas school.  I am your teacher.  Which is funny, because I am also in Lucas school.  Chris and I are still learning, still figuring this out.  (All parents are, right?) Here are a few things that we have learned, and that may help you appreciate our little man and our family a little better.  I have decided to write this in list form, because I have a newborn and get very little sleep.  And paragraphs are hard.

Here we go.  Crash course in Lucas.  Buckle up.

1)  Lucas is not mentally retarded.  He is actually quite brilliant.  He is probably smarter than you are.  I'm not kidding.  (disclaimer:  if you are a parent who is blessed with a child who is developmentally disabled, please understand that I am not making an unfavorable comparison between your child and my own.  I am merely stating that autism is not the same because it is a fairly common misconception.)
2)  Lucas is not mentally ill.  Autism is not mental illness.  (If you or someone you love suffers from mental illness, please apply the above disclaimer.  Again, I am just taking the opportunity to clear up surprisingly common misconceptions.)
3)  Lucas may not look you in the eye very much when he talks to you.  He is not being disrespectful.
4)  Lucas loves animals.  No.  I mean, loves.  There is only one person that I personally know who knows more about animals than Lucas does.  That is my father, who holds degrees in biology and animal husbandry. My dad might know a little bit more than Lucas.  For now.
5)  He also loves pretty deserts.  Cupcakes.  Petit fours.  Pies.  Croissants.  Cakes.  He carries Williams-Sonoma catalogues with him everywhere he goes.  His favorites are the Christmas, Valentine's, and Easter issues.
6)  Lucas needs order.  He needs for his special things to be safe and where they belong.  So if you come over to our house, I'm not going to make Lucas share his beloved plastic lion with your kid.  If that makes you think that I'm a lousy parent for not teaching him to share...  go ahead and think that.  I don't care.
7)  He is as gentle as a lamb.  Really.  I love this about him.  It would never occur to Lucas to bully or tease another child.  Never ever.  This is also sometimes a little concerning.  I worry that he will be the one that is bullied, that he will never stick up for himself.  (I guess that's why God gave him three brothers.) As sweet of a personality trait as this is, it is really inconvenient for sports.  He played soccer last year, but would have never dreamed of trying to take the ball away from any of the other boys.  Lucas really just wanted to play a little in the dirt, watch the clouds, hold his coach's hand, and occasionally run up the field.
8)  Lucas's emotional reactions can be really intense.  This isn't as much as a problem as it was when he was younger, he is getting more and more self control as he matures.  However, we do still have some fairly unpleasant melt downs.  Usually, over something that to you may seem like a non event.  For example, forgetting a book in the car in the school parking lot can completely ruin his day.  And his teacher's day.  And the teacher's down the hall day...
9)  You may see Lucas in a room with a group of children, but not playing with them.  It may be your first reaction to think that he is an outsider, or that he is too shy.  He is neither.  He enjoys being with the other kids, but he really likes doing his own thing.  I am such an extravert that it took some time for me to appreciate this about him.  It always made me sad, and I assumed that he felt the same way that I would feel had I been sitting outside a large group of kids.  That he felt lonely and left out.  But Lucas isn't like me, he's more like the anti-me.  He is perfectly happy to be close to the group of boys wrestling on the floor, but he would rather not get in the middle of all that, thanks.

I know that after learning about a diagnosis like this, sometimes it's hard to know how to act.  It may be difficult for you to know how to treat Lucas or to treat us.  Not any differently, thank you.  That may be hard, and you may feel awkward because you love us and you want to say and do the right things.  But we really don't want sympathy.  We don't want heads cocked to the side and puppy eyes.  We don't want special treatment.  Here are a few "Do's" and "Don'ts" to help you not make me mad.  (How's that for being blunt?)

DO please talk to him and not over him.  He may not answer you, he may not appear to be listening.  But I assure you, this kid misses nothing.  Nothing.  And it makes him very uncomfortable to hear you talk about him.

DON'T tell us you're sorry.  I know that this is a very common reaction to bad news.  And to you, that may be what this is.  But it isn't bad news to us, it's just who Lucas is, who our family is.  When your first reaction is, I'm sorry, you are saying that you think that there is something wrong with my child and you are sad about it.  That is not how we view our little boy.

DON'T talk to us about a "cure" for autism, or of Lucas being "healed".  He does not have cancer.  He is not ill.  Your intentions may be good, but the message this sends is that in your eyes our son is broken and in need of fixing.  This is not how we see him.  Not at all.  Lucas doesn't need to be fixed, he just needs to be understood.  He may not be like your child, but that doesn't mean there is anything wrong with him.  His brain just works differently than ours does.  That's all.

DO feel free to talk to him, shake his hand, hug him, just like you would any other kid.  Not all kids on the spectrum (or off the spectrum, actually.) like to be touched, but Lucas doesn't mind.

Do talk to us about Lucas's diagnosis if you want to.  But don't if you don't.  It's just a word.  Our family isn't defined by it.  Lucas isn't defined by it.

I'm sure that I will write more about our family's journey on the spectrum, and that there will be much more that I will want to share here in the future.  But for now...  Please just remember that we're the same family we were yesterday.  Lucas hasn't changed, he's the same little boy you saw last week.  He's the same kid, now you just have a picture to go with the word "autism".  Now you know what autism looks like.

Like this...

 And gives great hugs, like this...

 We couldn't be prouder of our boy.

Don't Worry. They're Clean.

Oh, Fuzzbutton Candy-Eater.  You are such a rascal.

Happy Friday!

The Best School Portraits EV-AH

I've been meaning to write about this for a while...  Like, since October, a while.  But I have a baby in my belly.  And the baby sucks away all of my brain power.  Which is really saying something, because I'm generally really on top of things.  Like laundry and getting new tags for my car on time and stuff like that.  And I'm a big fat liar.

But I digress.

So, I don't mean to get all hoity and toity on you, but I'm about to.  One who has such beautiful children should have a camera.  Check, and check.  I take a lot pictures.  Really, I have no need to order school pictures.  Frankly, school pictures always turn out pretty Sucksville.  Those weird muddy backgrounds and plastered on smiles?  Ick.  Not my hoity-toity cup of tea.  But I order them anyway.  There's something nostalgic and charming about their crappiness.  I love it.  And this year...

They did not disappoint.  I could have scanned the images into my computer, but instead I'll show you the picture of the pictures that I snapped with my iPhone from my car.  I want to share with you my elated feelings of mirth and glee.  And the wording around the photos that is printed on the envelope is priceless.   

Tomorrow's Treasures indeed.  Oh my sweet Lucas boy...  I couldn't possibly love you more.  Can you be more awesome?  No.  No, you can't.

(check out last year's school photo post here if you're feelin' the magic.)

And Max.  Oh, Max.  You're the cream in my coffee, little man.  I love you, I love you, I love you.

Look out, he bites.

It's decided.  I have the most awesome boys in the universe.

Lucas Plays the Fiddle

Lucas woke up early on Saturday morning.  He pulled on his shoes and went outside to play in his pajamas.  Chris and I looked out our bedroom window and saw him playing out there.  We knew what he was up to...  Working off some nerves.  Lucas was going to play before a judge in a music festival for the very first time.    He didn't really know what to expect, so I'm sure he had some butterflies in his tummy.  But I knew exactly what to expect.  So I had big time butterflies in my tummy.  Lucas was quieter and more cooperative than usual.  (hmmm....  maybe he should play in a festival every morning?  Just kidding.  No I'm not.)  

We got to the college, found the music building, and after warming up in a practice room found a place to wait for our turn.  When it was Lucas's time to play his teacher asked him if he wanted me to go in with him, or if he just wanted to go in by himself.  "By myself." he replied confidently.  

Wait...  What?  By myself?  You mean not all the rest of these people, right?  You mean Daddy can wait in the hall right?  You can't possibly mean not Mommy.  But he walked into the room in front of his teacher with his violin under his arm and never looked back.  

Who is this strange child???

I resisted the urge to watch through the little window in the door and had to be content standing outside trying not to barf.  Nobody cried, nobody barfed.  (But I was close to both.)  Instead Lucas came out into the hallway beaming.  

We all left the college campus proud enough to burst, Lucas was walking on air.  So, so, so proud of that boy.  Then we headed to our neighborhood bakery to get donuts for everyone waiting for us at home.  And a chocolate petit four for Lucas.  Because that's what you do when you're proud of your seven year old.  You let them eat petit fours at 9:30 am.

Great job, Lucas!!!

Celebrating Seven

Lucas's birthday celebration started with donuts.  Like every proper celebration should.  I tried, oh how I tried...  To talk him into taking a healthier treat to school for his birthday.  But he wouldn't hear of it.  It had to be donuts.  Okay then, seven year old.  Donuts it is.

A room of first graders with their tummies full of sugary donuts and chocolate on their faces at 10:00 am on a school day.  Bye bye!  It's time for me to leave now!  Buckle down and learn those lessons, you sugared up bunch of wild animals!

Next in the celebration queue, part-ay.  You have to understand that birthday parties are a pretty big deal at our house.  The boys decide months in advance what the theme their birthday party will be and what kind of cake I will make them.  I've been trying to convince them how much fun it would be to have a party where all of the kids get to decorate their own cupcake.  (I know!  I'm brilliant, aren't I?) But so far, nobody's going for it.

The theme for Lucas's party this year was Angry Birds.  Because he's a seven year old boy.  Of course he needed an Angry Birds Birthday.

I have always made the boys' birthday cakes myself.  But I've been so sick lately that I had to have a little help.  My lovely and very talented friend made these.  Why do I always insist on doing it myself every year?  This year was awesome!

Lucas was beside himself with rapturous delight...

I ensured that all of Lucas's friends parents would love me by sending them all home with sling shots.  But every kid needs a sling shot, right?  We used them for a game where the kids tried to knock down the piggies with a little rubbery bird and their new sling shot.  Seriously.  A big hit.

This game was a lot harder than it looked!  But Laura was tenacious.  She wouldn't give up until she had knocked down all three piggies.  She did it.  Because she's War-wah.  And she rocks a sling shot.

After taking this shot of Laura I made a joke about a Caravaggio painting that none of these uncultured whipper-snappers got...  Caravaggio?  David with the Head of Goliath, anyone?  Anyone?  Bueller??  Aww, come on!!

Anyways...

Here's an adorable baby.  It's a good thing there's a baby in my belly or this little man would cause me physical pain.  Too.  Cute.

 

Buddies!

It's good to have friends to help you open your birthday presents.  How else could you get it all done?  So much work...

 Sometimes, Lucas really doesn't like the Happy Birthday song.  So we didn't sing it.  And birthday candle blowing outness happened faster than I could catch...

 That's a supportive little bro, right there.

And then finally...  Ending the Lucas is Seven Happy Birthday Extravaganza with dinner at PF Changs.  Because it was Lucas's birthday.  And we wouldn't dare eat anywhere else.

 Hooray for seven!!!

Seven Years of Lucas

My Lucas boy turned seven on Saturday.  Unbelievable!  For the last couple of years I've put together a little video for each of the boys on their birthday.  (ummmm....  I'm a bit behind on Harry's 2nd birthday video.  I'll do it, I'll do it!  Promise!)  So, here's Lucas's seventh birthday video.  I don't mean to brag...

But... my kid is freaking beautiful.

(or go here)

The Exact Books

I don't know if I've ever mentioned it before, but my Lucas boy likes books.  No.  You don't understand.  This kid REALLY loves books.  He always has a trio of favorites that go everywhere he goes.  They sit in a neat stack while he eats his breakfast.  They go in the car every time we leave the house.  They go to bed with him each night.  The trio gets changed up every once in a while, (four actually, if he thinks he can get away with it.  But I had to lay down a "only three books in the car" rule a long time ago.) but they go everywhere he goes.

The boys did their last session of summer camp at the zoo last week.  I was somehow miraculously successful in convincing him to leave his books in the car and not take them into zoo camp.  I was pretty impressed with my skills of persuasion, actually...  But in his classroom at the zoo, they had books.  Oh, man.  Did they have books.  There was one particular book that Lucas was really in love with, and there were bitter, bitter tears when it was time to leave zoo camp and he couldn't bring it home.

Bitter tears, Gentle Reader.  Bitter, bitter tears.

But Lucas comforted himself with a brilliant idea he hatched all by himself.  "I know!  I can make the book!  I can make the exact book!"  And that was what he called his literary creations.  His "Exact Books."

 He used one of his own books as a guide.  Every page featured a different animal, illustrated in green marker.  Because that's his favorite color.  Why aren't all books printed exclusively in green?  Green chipmunks.  Green jellyfish.  Green North American river otters.

 And...  this photo has absolutely nothing to do with anything.  But I like it.  He is an astronaut.  Obviously.  I love wacky boys.