10.20.2012

How our journey began

Great eye contact, engaged

We didn't always know Sophie had autism. In fact, in the first 18 months of her life she was as unautistic as could be. We joked she was our most social child (she's the third of four siblings), as she never seemed to have gone through the shy phase that marked both our older kids' early toddlerhood. She was unique always, though it is only the wisdom of hindsight that judges her uniqueness as something indicative of a disorder that would have made such an impact in just a few short months.

 


At the time we delighted in this gorgeous creature who hardly ever cried, never fussed or seemed unhappy and had an air of quiet repose always. Nothing pointed to an abnormality, quite the opposite. She seemed to be developing beyond her peers with what we judged as incredible maturity and self-awareness. She walked late, which only added to her cerebral image. At 18 months she had around 50 words in her vocabulary, including the names of all family members and many of our friends. She would greet everyone with a "hi!" and a grin. We saw our pedeatrician for the big developmental checkup at that time and left with only mild concerns regarding her not walking yet and none whatsoever regarding her social/cognitive/emotional development.

 

Camping, playing with sand toys, interacting with older sister. No indication of autism

Little did we know that in just 6 months we would be back in his office completing the autism checklist, which was followed by a developmental pedeatrian's evaluation and subsequent diagnosis of Autism and Global Developmental Delay.

 

The Regression

The year of 2012 began, as in many households with small children, in a stream of colds, flus and general malaise that ceaselessly cycled through our family from January through April. Since any given week we were all either sick, recovering or both, initially Sophie's regression went unnoticed. We had also assumed that since she had finally started walking, learning new words had been temporarily put on the back burner. Around Easter she came down with the nastiest bug yet. A violent stomach virus raged through her little body for 2 weeks, leaving her frail and emaciated. Naturally we didn't expect her to be working on any new milestones as she recovered. Another month went by. Her appetite returned, her cheeks got rosy and her body regained its plump roundness. And we had to admit it then- our Sophie was gone. Her once bright and inquisitive eyes stared blankly above our heads. When was the last time she played with toys? We couldn't recall. We started to desperately try to engage her as she stared fixedly at the tv, Thomas the Tank engine, the only show she ever wanted to watch. When did it become an all-encompassing obsession?

 

Our realization of the occurring regression didn't stop it. Like a tornado destroying everything in its wake, the neurological storm that was going on inside our daughter didn't recede until it stripped away whatever it could, leaving just a shell of the vibrant little girl that once was.

 

And Now


Off in her own world, among the leaves in the trees
Sophie doesn't speak. She doesn't play with toys. She doesn't want company, actually she seems to prefer not to have it. Engaging her in interaction is difficult. It is unclear what she does or doesn't know or understand.

But... She is still sweet. Her smile still melts our heart. She is still seldom fussy or unhappy and she still exudes calmness and repose. She is worth fighting for and we won't ever stop.

 

8 comments:

  1. I had a lot of tears reading this post, as it brought back a lot of memories of Janey's regression. It's heartbreaking to see. I wish I could go right through the computer and sit down with you and have coffee and talk about all of it, and meet your sweet Sophie. I will of course be reading here and hoping for the very best for all of you.

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  2. Thank you Suzanne. I love your blog too. I think I decided to tell our story because there are so few of us moms of little autistic girls. We need a voice and our girls do too.

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  3. One thing that puzzles my is that my Dia never spoke, she has never said one word, just babbled alot more before now she just makes sounds or blows raspberries and flaps her little arms.
    she is also very very fussy with what she eats!

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    1. From what I read the regression may happen at a certain span of development (but usually sometime between 1 and 3). So perhaps your daughter started regressing while still at pre verbal stage. I also read that some doctors believe there is a certain regression in most, if not all autism cases, just they happen too early for parents to really realize it. I'm not by no means an expert, but naturally read a lot about regression! Thanks for visiting!

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  4. All this time, with my Little Miss, I have never once considered regression. But reading your story about Sophie is making me think twice. Little Miss was internationally adopted at 10 months. We have always wondered about the reports we got from her foster family in Korea -- they paint a picture of a very different child. My husband and I thought ther must have been a translation issue, but now I wonder... Was that the beginning of a regression for our daughter and we just didn't know because we had no idea what tot look for?

    Thank you for sharing your story and helping me to reconsider some of my assumptions. I probably will never know the answer but it's definitely worth pausing to think!

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    1. Sophie's regression was quite profound but from what I understand most cases are a bit subtler. If they happen before the child is verbal they can be quite tricky to spot (a case of "didn't she used to..." But then you're not even sure anymore). In you're case it's next to impossible to know for sure! From what I understand though, regression other than ripping the parents' heart out has no real effect on long-term outcome.

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  5. The stories of regression just break my heart
    I used to cry when I would find old videos of R
    Finally a book "My stroke of Insight " gave me some peace
    Here is a post where I wrote about how to make peace with regression
    http://www.hopefulparents.org/2011/11/finding-peace_04.html

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    1. Yes, regression is really awful and I really believe not talked about often enough. Prior to it happening to us, I had no idea it was such a common trait of autism. I had always assumed kids were born autistic. I will look at that book, I think I saw her on TedTalks. Thank you for sharing your post with me, it was a beautiful reflection.

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