Ferris Wheels Rock!!!

Autism loveRegressive autism is strange.  One day Kirsten is there, talking, looking me in the eye, even joking.  And the next day she is gone.  So where did she go???

How could it be that the child that was, is no more?

I have a vivid memory of Kirsten, 2-1/2 years old, teasing me.  Yes, teasing me!  you see, I had this musical carousel horse that she knew was special.  And with a sparkle in her eye, she gives me this little sideways glance, grins an says, “That’s Kirrrsten’s hooorsey!”  Me: “Noooo.  That’s mommy’s horsey!”  K: “That’s daaaddy’s hooorsey!”  What a sense of humor!  At 2-1/2?!!! 

Oooh, to imagine the things to come.

Of course, all this was gone just months later.  No more sparkle, no more teasing, no more smile.  Just gone.  Replaced with this beautiful girl that appeared to be in her own little world.  Language down to rare, difficult-to-understand, single-word requests:

K: “Awel.”  Me: “Awel?”  K” “Awel.”  Me: “Awel?”  K: frustration!  Me: “I’m sorry honey.  I know it’s hard.  Say it again.  I’ll get it!”  K: “Awpel.”  Me: “Apple!  You want an apple?!”  Got it…

And this was life, with the exception of an amazing, albeit brief, reprieve:

Right in the midst of these initial days, a little fair came to town.  Kirsten and I headed off for some mind-off-it activity.  We jumped onto the Ferris Wheel and settled in for a ride.  It went up and up and up… and just as we headed over the top, fear – anxiety – joy – excitement… whatever it was kicked in.  Kirsten, my nearly-non-verbal little girl, held me tight while loudly and rapidly repeating, “I love you!  I love you!  I love you!  I love you!”  Wait, whaaat?!!  Best moment ever!

I knew she was still in there!  I knew it!!!

And although this burst of language didn’t last beyond the Ferris Wheel, I took it for exactly what it was …the promise of great things to come.

Your turn! How has your child surprised you?

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4 Responses

  1. Rebecca Cufaude says:

    Wow, Abel was 12 months and starting to speak..he could say clearly three word sentences. They were rare, and would catch you off guard. He mostly whispered them. It would be mostly to family friends in reference to where mommy was. I had heard it my self several times, then at 18 months he completely stopped….replacing his clear words with babble. The babble had inflection. You could see that HE knew what he wanted to say and it was not getting to his mouth properly. Oh, his frustration. At age three he started to replace his babble with a word here and a word there…he is still behind, but is doing much better. If his world is calm and quiet he can speak clearly and well. But if it gets to be to much he reverts to three word sentences. We explained this to the psychologist yet, he did not believe us. We have an ADHD diagnosis which we accept. We decided to approach his learning as if he had a diagnosis on the spectrum. We are happy we chose to do this…he has responded much better to this approach. We had the help of his daycare provider who also feels he is on the spectrum. Being she has worked with several we decided to follow through. Sometimes it is better to know your gut, just because we don’t have an “official” diagnosis” we have his best interest at heart..and it is working. We have a long way to go…he still talks like a two year old…but he is talking.

    • Autism Makes Me Laugh | Tammy says:

      Well *I* believe you Becca! When Kirsten lost her language she could talk better in a quiet room, while NOT giving eye contact, and given LOTS of time – at least 15 seconds before she would respond. (Probably trying to form words in her head). If I repeated my question she would just repeat it back to me and her original thought would be gone. Yeah for you in treating him “unofficially” on the spectrum! Smart mama ;)

  2. Cheryl says:

    Tammy — I love your blog! You’re a good writer, and I’m looking forward to reading more entries!