Tuesday, September 24, 2013

Bittersweet

The other night, I had an unusually long conversation with my son, Danny who has autism.  In all his 8 years, we have rarely had a lengthy talk, which has been a source of grief for me.  I have always wondered what he is feeling and thinking;  I want to understand where he is coming from so I can help him and so I can know him better.

When Danny was a toddler, he didn't speak.  In fact, that was my first clue that something was different about him.  Sure, he babbled, but at 2, he still hadn't uttered a single word.  When he did expand his vocabulary, every word was a hard-earned achievement.  We practiced and modeled speech for Danny hours every single day.  I dreamed about the day that my son would be able to communicate with me.

Now that he's older, Danny's speech is much more advanced, but still he rarely shares his feelings with me. He'll talk readily about certain subjects, like LEGO and Angry Birds, his two recent obsessions, but I don't often get much out of him about how his day was or how he's feeling.  And when he is experiencing a strong emotion, he has enormous difficulty communicating. He often gets tongue-tied or uses language inappropriately, which makes it almost impossible to decipher his meaning.  And he gets really annoyed if I grill him with too many questions.

In recent months, we have been making some headway; he has been telling me how he feels about things and offering up information to me like so many bits of treasure.  One day, Danny excitedly shared that his teacher had made Bruno's cake from a story they had read in class.  Another day, he declared that he wanted to buy his teacher a Valentine's Day present and listed possible gift ideas (LEGO sets were at the top of the list).  In preparation for a field trip, Dan remembered to inform me that he needed to wear a red shirt.

This breakthrough excites me so much, I can hardly stand it. I feel like I am getting a glimpse into a different side of my boy.  Like I am privy to some of his private thoughts.  All these years, I have been waiting for Danny to let me into his head a bit, to share his thoughts and feelings.  I have been imagining and daydreaming about what it would be like to understand my son better, to be allowed into his life more.  And it has been amazing.  I feel like I am bonding with him in a way that I never have before.  And this gives me hope for him and his ability to self-advocate.  I can tell he feels better too; he's less frustrated and seems proud when he can articulate his feelings.

So, why, why am I fighting back tears?  Why are some of my conversations with him breaking my heart?  Because along with his joys, Danny has also been sharing his disappointments, his fears, his struggles.

Often in the last few months, Danny has been coming home from school telling me how much he missed me all day long and that he hates being away from me that long.  Last week, Danny told me that he has no friends at school and that making friends is really, really hard.

And just last night, we had that long conversation I mentioned.  Danny explained to me in halting terms why he hates school, how everyone talks too much, how it just overwhelms him and gives him headaches, and how he can't really understand what is expected of him.  And he topped it off with this: "Mom, I am just no good at listening to directions.  I'm terrible at it.  I try.  I try my best, but I'm bad at it, and it's all my fault!"

All those times I wished and prayed that Danny could communicate better, I never considered that what he had to say would be very difficult to hear.  I always thought that I would be able to help him more if he could adequately express himself.  Somehow, mixed in with the immense pride at how hard he's worked and how far he's come, I also feel sadness.


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Patty is a stay-at-home mom to three wonderful kids, all of whom have Sensory Processing Disorder.  Her oldest son is also on the autism spectrum.  She is a freelance writer and started a LEGO Social Club for kids on the spectrum last year.  She blogs at www.pancakesgoneawry.blogspot.com

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