Beneath the Surface.

Things are happening at our house.  Strange, scary, and wonderful things.  Subtly, but in a big way.  When I used to got through the day with my son, I felt like I only scratched the surface of understanding.  There were barriers because of our inability to communicate. There are still plenty of barriers . . .

but some of them are coming down.

Week before last was horrible.  We had screaming, crying, unusually plentiful meltdowns.  There was a meltdown so severe, the “melter” fell asleep in his bean bag chair at 6:30 in the evening.

We have had increased physical behaviors.  Things he never did before have come into vogue.  Spinning and even a glimpse of flapping have occurred.  Running, falling, slipping, but always moving.  Accompanying all this movement, we’ve had an injury (the shiner).   He is less careful.  More wild in a way…  I don’t know if this will last.

We experienced a resurgence of play with toys that were in the back of the closet.  He’s pulled out books he read when he was two years old.  He’s reading them again, cover to cover – decimating his bookshelves, and leaving destruction in his wake.

There was a decrease in responsiveness to anything.  And then, in the second week, there were gains.  Gains that make me feel a newness with my son.  And what may seem small to you?  These things are huge to me.  At times, it almost feels like I’m being introduced to my son for the first time.

First came the eye contact.  It is nearly 80 percent improved.  He still has difficulty making that eye contact with others, doing the greetings and the goodbyes.  But when he is talking to me, he will actually put his face directly in front of mine, actively soliciting eye contact to assure his point is made.  He looks at me when I call his name, and in most instances, answers me with eye contact.

Next, I’ve noticed he has an increased understanding of the world around him.  He is more sophisticated in his operation of the TiVo.  He lists programs, scrolls through, finds what he wants and puts it on, usually with no help from me.  He will rewind and watch the same section of a show over and over, but hey!  He is no longer asking me to do it for him nearly as often.

He is playing video games with increased proficiency.  He has mastered several levels of PacMan and is getting better and better at Mario Brothers. He becomes giddy with excitement, screams and runs around.  His increased understanding is helping him learn self accomplishment and acquire confidence in himself.

Best of all is the language.  That crept up on me.  At first, I thought it was my imagination.  Then, I figured it was echolalia.  But as it happened more, and was consistently appropriate, I recognized it for what it was – communication.  Real communication.

Don’t get me wrong.  It is quite clear that my son has autism.  He’s different.  He remains different.  But now, he is has kicked some barriers out of the way.  The words are getting out.  The meaning is getting through.  And I’m getting access to things I suspected but never knew.

My son has always used the word “train” when he injures himself.  That has not changed.  Now though, he is playing Team Umizoomi’s “Wild West Toy Train Show” when he is upset.  I figured this was just part of the whole meltdown exacerbation and it seemed to help him calm down when he put it on.

But when the show was on, he told me he was afraid of the train.  When he’s hurt, he’s afraid.  Fear means “train”.  He can’t get the words out in the moment, so in the quiet of the room, with the show on, he told me.  Instead of thinking he is using “train” to express pain, I know he’s saying, “I’m scared”.  Now, I can comfort him instead of giving him the word, “ouch”.

I’ve had glimpses of language before.  There were sentences here and there.  Once (and only once) there was a string of five sentences put together that left me with my mouth hanging open.  But these were less communicative and more descriptive.

Now, daily, I’m getting communication.  Given, it’s not Socrates and Plato.  It’s mommy and 5 year old son.

He was laying on the floor, looking at his toy VW bug van. He opened the door and opened the hatch.  Then, he said to me, “I’m too big to fit in there,” very casually and matter-of-factly.  Aside from how funny this was, it showed me he has an understanding of size and he’s using his imagination.  I remember wishing I was small enough to get inside my Barbie cars a hundred years ago!

One night we were doing homework.  As usual, he was distracted while writing his name.  He got halfway through it and wrote an “a” that did not belong there.  I looked at him.  He looked at me.  I asked, “Who’s that?” pointing at what he wrote.  He sounded it out and read it.  When he did that, we both looked at each other and laughed.  It came out sounding like a girl’s name.  We both found this funny.  This had never happened before. It was a genuinely wonderful moment for both of us to bond in this way.

Just yesterday, on Halloween, he had a fever in the morning and could not go to school.  I gave him ibuprofen and he stayed home.  After a while, I asked, “How are you feeling?”  with no expectation of a response.  He said, “Better.”  Really.  He did.  One simple word and it was music to my ears for both reasons.

And lucky for me, for quite a few days now, in a rare moment of quiet, out of nowhere, unsolicited, he says, “I love you, mom.”  I have no words to communicate what that feels like in my world.  But it is amazing.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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18 Responses to Beneath the Surface.

  1. Lana says:

    Oh my gosh, Karen! I am just so happy for you right now! To be able to reach in and connect with your child and have him reaching back and connecting with you. And to hear those precious words that every mom wants to hear – “I love you”.
    Thanks so much for sharing this for two reasons: 1, so we can celebrate right along with you and 2, for restoring my hope in my own Bird!

    • solodialogue says:

      Thanks! It’s the meds that I’m talking about, Lana. The changes have come with the first full two weeks on the anti-seizure medication. It’s been a wild ride (and it’s not over) but when his levels started even-ing out, his language and his communication grew, and his eyes have opened a little wider to his world. I am so thankful that we found the right doctor. Finally. 🙂

    • solodialogue says:

      Oh Lana – there is always hope and things really change with time – always time, my friend! (And the “I love you” is just heart melting every time!) 🙂

  2. Flannery says:

    That is a WONDERFUL post!!!! I’m so happy for you, and glad that after all your hard work you are seeing progress. I swear, age and maturity really do help a lot with our kiddos. It’s so exciting to see those changes, and even better to hear the words you’ve been waiting to hear. I am smiling just reading that.

  3. Broot says:

    That’s awesome. 🙂

  4. Monica says:

    So happy for you, Karen!! The Best Great news post today. 🙂

  5. I was full of nice, insightful comments to share the whole time I was reading, but then I got to the bottom and saw that last picture… now all I can think of is how handsome your little guy is!

    Lots of great news here- very, very happy for you!

  6. Tam says:

    Just now seeing this, how awesome!! 🙂 Yay!

  7. ElizOF says:

    And then at the end, you add that gorgeous picture of your Tootles… he is such a doll… What you describe could be a shift and growth but I’m speculating.. you know best.
    I’ve been out of the loop with power outages and conferences… now catching up on comments. TY or your patience! 🙂

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