Saturday, July 30, 2011

SNSS: A Family Mosaic

Today's wonderful SNSS guest is Mama Apples of the blog Apples and Autobots. And she? Really has her hands full. Really. And that's an understatement. Think I'm exaggerating?

The tagline for her blog is: "The chronicles of two parents raising four children: a high energy little boy with Asperger's, his girly girl neurotypical twin sister, a quirky four-year-old daughter (who also has autism), and a nineteen month old baby boy in Early Intervention. Oh... mom also teaches middle school. Welcome to the crazy train!"

Yes. Four kids. Three on the spectrum. And a household full of love and understanding. Right now they are holding their breath to see where on the spectrum the littlest one lies, hoping that they can stave off regression.

Mama apples is a wonderful writer, a pleasure to read. Incredibly moving when she's being serious, incredibly funny when she'd being lighthearted.     

So come now, read about her unique and beautiful family here:


A Family Mosaic - by Mama Apples

My husband and I are the parents of four children.  Three of them have autism spectrum disorders and one does not.  Our children’s relationships are incredibly complicated.  I suppose they are like a mosaic — beautiful from a distance, but if you peer closely, you can see the cracks and gaps that we’ve had to fill in over the years, the places where the pieces don’t quite meet.
The individual pieces of our mosaic are, on the surface, beautiful in their simplicity.  Yet, careful inspection reveals complex patterns and even a few stress cracks born of being forced together.

‘Bot is our oldest child.  He’s nine, and he has Asperger’s Syndrome.  He’s like a gaudily painted piece of porcelain.  He’s a clown, a connoisseur of slapstick.  He tries to be a little tough guy, but his autism leaves him brittle, easily broken by too much sensory input or changes in routine.
His bright, colorful personality isn’t always enough to camouflage his chipped spots. He doesn’t socialize well, even though he desperately wants to, leading him to say embarrassing things to strangers.
At times I can see his twin sister visibly cringe at his antics.  Their relationship is strained more than non-womb mates because Princess never gets a break from him.  They spend recess at school together.  They can’t help but be compared to each other by teachers. This is true of all twins, but autism adds an entirely different dynamic to their twinship.

Chronologically they are only a minute apart.  However, ‘Bot is years behind Princess socially and emotionally.  Princess has remarked before that she wishes she’d have had a twin sister instead of a twin brother.  I can’t help but wonder if she feels twice cheated—denied the sister she wanted and forever paired with a brother so intrinsically different from her.

Princess is like a piece of highly polished quartz rock.  She is very girly and creative.  She has a sparkling smile and a keen, sharp mind.  She possesses a lovely spirit.  If you spend a significant amount of time with her, you can see that she is mature for her years.

That in itself is not a bad thing, necessarily, but her maturity is the result of nine years of having autistic siblings.  Princess has to make concessions to her siblings on a daily basis, whether it’s giving up TV time for four-year-old Tinkerbell to watch the same movies over and over, or allowing ‘Bot to push the shopping cart, even though she really wants to do it.  It’s easier not to fight him.  And it’s very unfair.

However, what worries me the most for Princess is not the number of times she has to give up a little.  Those are minor scratches on the surface of her soul.  It’s the deep gouges that worry me.  The times when her twin explodes and focuses his rage on her.  We’ve had to physically restrain him many times to keep him from hurting her, because it’s true, you know, the saying that you hurt the ones you love the most.

The scars left when even her accomplishments are a sacrifice.  You see, she’s an honor student, and ‘Bot struggles with academics.  Who do you think gets the most homework help? 

Chores are a battle in most families, but my kids take it to a whole other level.  ‘Bot and Tinkerbell have a hard time with following directions and staying on task.  Princess always ends up doing the lion’s share of the work.

We can keep glossing over these things, but eventually there will come a point that a girl’s day with mom just isn’t going to be enough to make her feel better.

And yet, she’s so strong.  She was one of ‘Bot’s first therapists, forcing him to engage and interact.  I firmly believe that the early socialization she provided him made a dramatic impact on the course of his autism.  She’s a wonderful big sis to the little ones.

Yes, she gets frustrated, especially with Tinkerbell, but she’s so good with both little ones.  She does speech a lot with Tugboat, and she did floortime with Tinkerbell.  She endures with a smile and adheres to her siblings with loyalty and love.  However, inside of her is a little girl who has always had to be so much more than just a little girl.

Tinkerbell, our daughter with autism is like a fine piece of china.  She is wafer thin, most likely from hours and hours of pacing and walking in circles.  She inspires protectiveness and gentleness in everyone she meets — well, almost.

On one hand she and ‘Bot are perfect playmates. ‘Bot’s social age and abilities are closer to age five or six, so he and Tink are on the same level in many ways.  Also, ‘Bot likes to be in control of play situations, scripting what should happen to everyone involved.
This works out brilliantly with Tinkerbell, because like many girls with Asperger’s/HFA, she is a born imitator, and she loves being told exactly what to do!  They generally play well, but we have to watch them carefully because ‘Bot tends to get too rough without meaning to hurt her, and when he does get mad at her, he’ll push her down or hit because he doesn’t make allowances for her age.
She also picks up his bad habits. A few weeks ago she embarrassed my poor husband by talking about her “nuts” in the OT waiting room!

Tinkerbell loves to follow Princess around.  Out of all of our kids, I think that their relationship is the most “normal.”  Tink is the typical annoying little sister, and Princess loves her to bits.  I get so much joy out of watching Princess paint Tink’s fingernails (after Tink has spent hours begging), and I can’t help but laugh at Princess’s incredulous expression when Tinkerbell immediately washes the polish off.

Tugboat is my beautiful, colorful piece of glass, the sharp edges of autism clearly present, but there’s time yet for Early Intervention to dull the edges.  His place in our mosaic, however, is already clearly established.  He is the baby of the family. 

Tinkerbell calls him “Baby Wild.”  She has a point. He manages to wreak havoc everywhere he goes.  He plucks blocks out of Tinkerbell’s line of toys.  He lines up bottles of Princess’s nail polish.  He loves roughhousing with ‘Bot, to the point that they aren’t allowed to play unsupervised. 

He is loved by all of his siblings, though it was a little rough between him and Tinkerbell in the beginning.  His wet fingers and toy grabbing didn’t exactly endear him to her.  Tugboat has communication delays, but the love he has for his older siblings shines through his eyes.

My husband and I practice the art of parenting day by day, carefully shaping and arranging our mosaic.  I have no idea if we’re doing it right.  Nothing is set just yet.  Sometimes one piece of our special puzzle needs to be mended, so we place it in the center and do the best that we can to hold it together.
Does that make any of the other pieces less important?  Of course not.  If one piece were removed, our beautiful creation would be left with a gaping hole, and we’d never find another piece that could perfectly fill that space.
What frightens me is the delicacy of the entire thing.  The idea that the pieces could be so easily broken, even our strong little chunk of granite.  I just pray that the glue we’re using, our love for each other and each of them, is strong enough to weather any storm.


I am so impressed by Mama Apples, how she takes her family's very complicated situation in stride. I struggle to balance the needs of my two. I can barely imagine doing it with such a disparate four.

And now that you have read her here you MUST go back and read her on her blog, Apples and Autobots. This is not optional, you really must.

Start with this post about a TOUGH day in sibling-land. Then go to this lovely one, about those moments of seeing how different children are in comparison to others, and coming to terms with acceptance.

Read this one, but not when you are already sad or depressed, it might make things worse at first. It's the tale of an awful meltdown, last winter and Mama Apples most painful experience, as a parent. And then this post is a call to arms for how folks can help a family when they see a meltdown in progress.

In this post, she has a line that I just found so wonderful for both its imagery and how it resonated, that I just have to share it: "I wish I could pry off the top of his little head and look around for a while at what's going on in there."  Anyone who has a child with a communication disorder, or whose kid thinks in a unique and normally opaque manner is nodding their head right now (and hopefully not looking for the can-opener).

Finally, you should follow Mama Apples on Twitter, and go "like" her on her Facebook page, where she is just as outspoken, lovely, lyrical and intimate  as she is on her blog.

Thank you so much, Mama Apples for gracing my blog with your beautiful words about your amazing family. (And for saving my butt. You know why.)

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