Friday, January 14, 2011

When the Pieces Don't Match

Recently, a dear friend of mine shared with me an object lesson, she had recently learned in a class about teaching special needs children.  4 people were called up out of the audience and each given a different role to play.  The first one, represented the normal child.  The second represented a blind child, and the third represented a child with sensory integration disorder and the fourth was given something else.  Then the instructor gave each of them a puzzle to put together in an allotted amount of time.  The "normal" child had no obstacles, so the puzzle was quite easy.  The "blind" child had a blindfold, so there was an added struggle as in the dark they worked to match up the pieces.  To the "SID" child, gloves were given to complicate the process.  When it was all over, and they each were sharing their thoughts and experiences with it, the person assigned to be the sensory child mentioned that her puzzle pieces didn't even match. Not only could she not feel the pieces in a normal way, she didn't even have the correct pieces to put together.

I loved this object lesson, because it explains so much about a sweet little boy in my life!  6 years ago, I had never heard of Sensory Integration Disorder, let alone have any idea that I would live with a son who would suffer from it.  And even when I did begin to hear of it, I didn't think it applied to me, because I thought it was about those children who were way overly sensitive to things.  None of my children seemed to suffer from that.

However, I have since learned, so much more!  Sam has several things, as I've mentioned before.  His main diagnosis is XXYY syndrome, which in a nutshell means he has extra chromosomes.  Instead of a typical boy who would be xy, he is actually xxyy with a mosiac of xxxyy or xxyyy (I can't remember!).  He also has abnormal white brain matter, almost like a stroke victim, except his is scattered all over his brain.  He has severe apraxia which means his speech is quite limited.  At six years of age, he speaks almost entirely in only vowels.  He has Sensory Integration Disorder and he also has qualities that place him on the autism spectrum.  That's a whole lot for one little boy to deal with and he has dealt with it his whole life.  For him, I imagine that going through life and doing what others do is like trying to put together a puzzle with all sorts of mismatched puzzle pieces.  I imagine it is incredibly frustrating and overwhelming.  It explains why some mornings he just plain wakes up in a bad mood and just a look from us can send him over the edge.

But even knowing or somewhat coming to an understanding of these things, does not make it easy.  Some days, when he is especially irritable and yells at me for saying "good morning", I want to curl up and cry.  When I ask him what he wants for breakfast and he yells, "I hate you" (in vowels only), I wonder if I will even survive the day.  And some days, we barely do.  Those days, I don't push it.  We don't go out and do things, even if we have planned them because it would just be a set up for failure.  It's not an easy life, and I know that many, many of you who may be reading this may be sharing in the exact same struggles.  Sometimes I feel worn out and beaten down and ready to collapse with exhaustion by 7:30 in the morning!

Then there are the moments when the pieces do come together and even if they are mismatched and wrong to others, for you and your child-they just fit!  It's that moment when he snuggles up close and says "I love you"  or when you stub your toe and he stops what he is doing to ask if you are okay.  It is at those moments when you realize that no matter how out of touch with the world they can seem one minute, how in the moment they really are.  And it is magic.  You cherish those moments because they may be 6 months apart, at times!

And when you watch them, work and work and work to make those pieces fit, your heart breaks and soars all at once.  How is that even possible?  You see that underneath the physical challenges and obstacles, there is a little soul just like the rest of us.  One that wants to be accepted and loved and wants more than anything to just fit!  I don't have all the answers as to why some children are born with super easy puzzle skills and why others have to scramble in the dark or why others have to spend their whole lives with pieces that don't match, but I do know, without a doubt, that those children are amazing and strong and better than all of us! 

I think the rest of us can learn a lot from these little people.  We can learn patience and understanding and acceptance.  We can learn that even when we think we have it tough and life is giving us an unfair day, at least we have pieces that match and we have the ability to put it altogether.  I'm thankful to be reminded of how blessed I am-every day.  And I feel blessed beyond measure to have this little boy in my life!


Hartley said...


I stumbled onto your blog today and am so touched by this piece you wrote. My son(s) have multiple challenges, including SPD, and I feel your pain.

I would like to personally invite you to contribute to the new SPD Blogger Network group blog that launches on 2/1/11. I would love to see this piece posted there!

Please email me for more information if you are interested. :)

Hartley Steiner (coming soon!)

Laura said...

Sam is blessed to have you for his mother! Not everyone would go to such lengths to understand and help such a special little boy. May you continue to bless each other.


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