Thursday, December 5, 2013

"One of those well meaning moms"

Photo courtesy of Google Images
When Boo (now age 9) was three years old we went to a birthday party for one of her preschool classmates.  There were 8-10 preschoolers and as many moms.  We were all in close proximity.  While the other kids were running, playing, and having a lot of fun interacting with each other my Boo clung to my side, crying, screaming, and thoroughly not enjoying herself.

At the time I cared what other people thought of my parenting, and I was mortified that my child was the only one screaming during what should have been a fun couple of hours.  Soon it was time to eat a snack of half-moon cookies.  I remember that Boo had calmed down, but was still visibly upset.  As she sat in the chair at the table she began sobbing looking at her cookie then looking up at me.  Looking back at her cookie she reached towards it ever so slowly, the closer she got the harder she cried.  It took me only seconds to realize she did not want to touch it.  The feel of the frosting on her fingers was more than she could bare.  There I was again, caring what other parents thought of me and my child, feeling embarrassed that my child was the only child using a fork to eat her cookie. 

Finally it was time to go outside.  The minute we stepped out of the house a switch flipped inside Boo.  She was happy again, calm, and content to play in the yard.  

In the midst of all the chaos one of those well meaning moms asked, "Has she been diagnosed with Asperger's Syndrome?".  I will never forget how that one question made me hate that mom.  How dare she even suggest something be wrong with my precious daughter.  What the hell did she know!  I remember telling her she did not have Asperger's (even though I didn't know much about AS I knew Boo did not have it).  I remember complaining to my close friends how other moms never know when to mind their own business.  I never admitted that deep down inside I knew something was up with Boo.  That incident was the beginning of what would later be diagnosed as Sensory Processing Disorder (SPD). 

That birthday party was an overstimulation of senses that Boo could not process all at once.  In the noise department we had several adults talking at once, along with several children yelling & playing.  In the visual department we had pretty packages of all different sizes and shapes, balloons in many colors floating around, and a diversity of people's faces in close proximity.  In the taste & smell department we had sticky frosting, sweet cookies, fruit juices, and an array of other foods.  ALL!  AT!  ONCE!  Still don't know how that feels to a child with SPD?  Try this little experiment:  

Go into a room, light some scented candles.  Turn the tv & radio up loud, turn on all of the lights, call in your family and ask them to talk to you.  Get the dog barking, call up your best friend on the phone, grab some colorful scarves and dance to the radio.  ALL!  AT!  ONCE!  
Now shut it all off.  You can breathe again.  That was the switch that flipped when we took Boo from the party to the outside.  

Years later I no longer care what other people think of my parenting, my children's behavior, or even their misbehavior.  Years later I wish I could go back to that "Well Meaning Mom" and give her a hug and a thank you.  She got us thinking, she made us realize that we had something to research, she had us questioning Boo's behavior.  She was not rude or imposing.  She truly was one of those well meaning moms. 

I learned that I could trust other moms, trust my gut, and listen to my child.  After all, I too am "One of those well meaning moms".  

If you think your child might have Sensory Processing Disorder or want to learn more about children with SPD check out  The Out of Sync Child by Carol Kranowitz .  

Sunday, December 1, 2013

Building Blocks

Our first indication that Boo was unique or had Autistic tendencies was when she was between 15-20 months.  We were sitting on the floor with her playing with wooden building blocks.   The blocks were outlined in colors, ABCs on one side, numbers on the other side, complete with matching letter pictures.  She was meticulously stacking a tower as tall as she was.  

The blocks were aligned straight as could be with capital letters, colors, numbers, and pictures all following in their own suit.  We would turn the blocks upside down, twist them out of alignment, or match a number to a letter side.  She would turn around to get a new block, come back to notice our changes and fix it perfectly before she moved on to stacking the next block.  

Photo courtesy of Google Images
My husband's strongest memory comes from yet another set of building blocks.  She had a set of nesting blocks.  Here is his recount of that memory in a recent email to our Autism Lead at our school:  

"I wanted to share with you that we first noticed Boo’s behaviors when she was still a baby.  Boo was always sensitive to environmental changes and loud noises.  As she grew she was always content to play with her toys and did not require much interaction from other kids or us to keep her happy. 

One of the first telling experiences was when she was about 3 years old.  Boo had multi-color nesting blocks with numbers, letters, and colors on each side of the boxes.  Most kids would have been happy to stack the blocks anyway possible and make the stack high until it tumbled over.  Boo on the other hand would stack the blocks one at a time largest on the bottom to smallest on the top.  The numbers, letters, colors, and edges would always align and increase sequentially.  As a test, I would sit with her and as she stacked each block and turned to grab the next I would move, change the order, or mismatch the numbers or letters of the blocks.  When she turned around with the next logical block she would observe the change, pause, turn back around and place the block in her hand on the floor and return to the stack and correct all of the mistakes that I had induced.  She would then turn and grab the next block and continue the stack, each block perfectly aligned at the edge with all of the numbers, letters, and colors matching.  Anytime I would change something she would again correct any mistake and then continue to stack the blocks.  She never seemed to grow tired of this play."

Throughout the years Boo was was intrigued by any toy that enabled her to sort by color, shape, and size.  It did not matter if that toy was "too young" for her.  If she could stack it in ascending order, group it, or create an organized pattern it was a toy that kept her busy for hours.  At that time we did not know she was paving the way for our journey to Asperger's Syndrome.  

Years later while working with Boo's psychiatrist at Children's National Hospital we would learn that her fascination with patterns, detail to ascending order, and need for organization was a telltale trait of Autism Spectrum Disorder (ASD).  

We still have the wooden building blocks in a closet.  It is one toy I cannot bring myself to be rid of.  They are more than just a toy.  They are more than a memory.  They are what shined a light into Boo's soul.  They are the blocks that built a metaphorical stairway for us to climb towards answers; one perfectly aligned step after another in the most beautiful pattern you can imagine.  The blocks are a symbol of how unbalanced the tallest tower can be; crashing down with the slightest touch.   Even that is okay, we have learned from a very beautiful and gifted girl that with patience and attention to detail we can rebuild.

Saturday, November 30, 2013

To Be Completely Honest

Photo courtesy of Google Images

While we have known for years that our daughter, "Boo" was an Aspie Girl our official clinical diagnosis didn't come until September 2013.  She's 9 years old.  We never allowed ourselves to self-diagnose her, we never used Autism or Asperger's Syndrome to describe her.  We would never trespass on the those living with Autism until we had solid proof.

When that solid proof came I sat down and cried.  The weight of the world had been lifted off my shoulders, we had answers, we could form more plans, we could get outside help, we could talk to Boo in a language she'd understand.  It was the end of our fight to get outsiders to see what we saw.

Parents I know already living with and having learned to parent their children who are on the Autism Spectrum told me we would find the blessings, the good.  They all said the same thing, "focus on the positives".  If I were to be completely honest, my initial reaction to those parents was a great big "F-U".  My middle finger shot up at the good, the positives, and I sure as hell wasn't going to see this is a blessing.

In the middle of this came a conversation between a close friend and myself:

  • Friend: Do you find it all fascinating? Or...something else...?

  • Me: TOTALLY FASCINATING!!! Also, discouraging. I've read a bit in the past, but now I'm reading a shit ton so I'm learning a lot more and learning how to work with it. Which definitely makes things easier. However, if I could undo it all in a heartbeat for her I would. At the same time I think, if I could undo it all how else would she be undone? Would her heart not be as big towards animals, would she not have the empathy she feels towards anyone hurt? Would she be so smart, creative, and easy to love? I look at other girls her age and sometimes I'm thankful for her AS b/c she's so much NOT like those little witches. I look at other girls her age and sometimes I'm sad b/c she's NOT like those little witches. It's a catch 22 I think. I think I'd be 100% okay with the AS if Anxiety & Depression were not associated with it.

So, to be completely honest I am learning to find the good and focus on the positives.  I won't find it all overnight, and I won't always be 100% at peace with AS. You will still hear me cussing out and flipping off Autism.  I won't always parent my Aspie with zero frustration and in complete understanding.  Isn't that true to parenting any child?

To be completely honest I wouldn't change either of my children to make my life easier.  I cannot change either of my children to make their life easier.  I don't want to imagine how else they would be undone if I could do that.  So we continue on this journey...and we'll come by all of this honestly!