Wednesday, August 11, 2010

Early signs

I've been thinking lately about the very first, honest-to-goodness, back-and-forth conversation that I ever had with Bud. I can recount it to you verbatim, because it was such a big moment that I immediately captured it in writing:

Me: Let's go get your coat.

Bud: Outside?

Me: Yes, we're going outside.

Bud (getting a ball): Ball.

Me: No, we can't play ball outside today. It's too cold.

Bud: Slip-ee?

Me: Yes, it's slippery, too. We're going bye-bye in the car.

Bud: No boots.

Me: No, you don't need boots in the car.

Bud was just over two-and-a-half, and he wasn't speaking much. There were occasional words and phrases - mostly echolalia, though I didn't really know it at the time. He was already in early intervention, but he had not yet been screened for autism - though the possibility of it may have begun to creep onto my radar.

But then: conversation! I was certain at the time that it was the start of what would become an explosion in language development - a sign that, within months, I would chuckle and wonder why I'd ever been worried. It was the thing that I pointed to - the thing I clung to - as I shaped a world view in which my child did not have a disability. Yes, I thought, his speech is delayed. But we have conversation!

And we did have conversation - one conversation - when he was two-and-a-half. The next one might have been a year later; it might have been much later than that. I'm not sure, because that one was not captured in his baby book.

I've been thinking about how that one conversation shaped my mindset in those early days. It may have held me back from really recognizing what was going on with my son's development - may have kept me longer in denial, may have made me less likely to seek additional support. But I think it played another role, too. I think it kept me focused on Bud's potential. It made me see him not as a child who couldn't converse, but simply as a child who didn't converse. There's a big difference there. With the former mindset, I think I would have viewed him as a child with limitations; with the latter, I saw him as a child facing obstacles. It helped me to focus on helping Bud master the obstacle course, rather than making it okay for him to sit out the race.

And as I think about that, I think about all of the attention paid in the popular press to the "early signs" of autism - the behaviors that indicate that your child might have the disability. It occurs to me that we might want to start giving equal attention to a different type of early sign - the behaviors that indicate that your child with autism might have tremendous potential - tremendous ability. Even if you only see those behaviors briefly. Even if you only see them once.

Bud and I have frequent conversation these days. They're different from the conversations that I imagine most parents have with their ten-year-olds. But now, as when he was two-and-a-half, our conversations are full of moments - brief illuminations - indications that he is capable of so much more and that he is constantly reaching for his capacity.

Early signs.

We should talk about them more.


MOM-NOS writes about life with Bud at Mom - Not Otherwise Specified and is delighted to have joined the Hopeful Parents writing community.

16 comments:

  1. My 7 year old was just diagnosed with PDD-NOS on Friday. We never pushed diagnosis as his pdd is mild. We only went ahead with a large battery of tests this summer as he was having alot of problems academically with school this past year. I have been wondering since Friday how different my son would be if he had been diagnosed at an early age. You know what? I think he would have been worse off and here is why.
    I had to call a new speech therapist Monday who specializes in language comprehension disorders. When I informed her that my son was diagnosed with pdd-nos she hesitated and said, well will he sit at a table and let me work with him? I don't usually work with autistics.
    There is a stereotype that comes with autism for many and it usually places the bar really low for what they can achieve. My younger son (6) who has a more severe form of autism is homeschooled specifically because we couldn't believe how low the schools expectations were for him.
    You are absolutely right. The emphasis needs to be placed on what our kids can do and will be able to do. Enough worry about what they can't do.
    Jasmin

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  2. Gosh I absolutely love this
    There was this article in CBS that I read recently which had the starting line as "yes your child is beautiful but does he have autism"
    I wanted to shout back - "yes my child is beautiful AND he has autism "
    I detest the way some people in the media talk about autism as though it precludes ability, beauty and love all of which brim in my child

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  3. Oh, MOM NOS, you always nail it.
    I wish I had read this post when in those days that I was freaking out that I didn't "intervene" early enough.

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  4. It's incredible how much the very first "real" interaction impacts us. I remember my little man's like it was yesterday. I picked him up from "special needs" preschool when he was around four and to this point our post-school day chat would go like this:
    "How was school today?"
    ".... today"
    "What did you do that was fun?"
    "..... fun"
    "Did you listen to a story?"
    " ... story"
    So on the momentous day our conversation went like this:
    "How was school today?"
    ".... today"
    "Did you do anything fun?"
    ".... fun"
    "What did you hear during story time?"
    " .... ... ... book?"
    I held my breath and said "Your teacher read a book?"
    "Read book!"
    Trying not to to cry right there in the middle of the parking lot (and having the presence of mind to step out of the flow of traffic after I had stopped dead in my tracks for a moment or two) I said
    "What was it about?"
    and my sweet beautiful silent boy said "Ladybug!"
    This from my child from whom the only clear interaction I had been able to get was the occasional "yes" or "no". He immediately reverted to his echolalia patterns but I sent a note with him the next day to find out what book had broken through to my son. (Eric Carle's The Grouchy Ladybug) We purchased it the next day on the way home and it was his favorite for years.
    Thanks, Mom-NOS for the walk down memory lane. These days when my son rarely stops talking, it's nice to be reminded how lucky I am that he speaks to me at all. Especially on those days when what I really would like is a moment of silence. :)

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  5. KathieC, I think The Grouchy Ladybug just became my new favorite book.

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  6. I'm so, so glad you're posting here. You truly are a Hopeful Parent, capital H, capital P.
    As Drama said, you totally nailed it, again.
    xo

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  7. what drama said. squared.

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  8. "It occurs to me that we might want to start giving equal attention to a different type of early sign - the behaviors that indicate that your child with autism might have tremendous potential - tremendous ability. "
    ABSOLUTELY!!
    I've been stewing like mad lately because when my son was diagnosed with autism, he was also diagnosed with a very low IQ and I felt like the prognosis from the professionals was very grim. All that number shows me is that he simply doesn't test well. I know he has tremendous capacity for learning and cognitive growth and it makes me rage that they would have me believe otherwise.

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  9. Thanks for sharing this. I have always been frustrated by those "early signs" that they didn't really fit my daughter. No smiles - heck no she smiled all the time. No babbling - no again, non-stop...drive you crazy kind of babbling. etc. etc. The first sign something was amiss was at 18 months when she wasn't learning any words, and still hadn't by 2 and only did when I started on my own cluelessly just doing whatever I could to get her to talk to me. I never doubted her potential, and still don't, but I've been wishing the signs had fit better so we could have done more... Your post gives me a new perspective that perhaps I should count my blessings instead of railing against the "system" that failed me. Though I don't want it to fail others...much to think about.

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  10. "With the former mindset, I think I would have viewed him as a child with limitations; with the latter, I saw him as a child facing obstacles." Wow. As the mum of a 14-year-old who is firmly at the center of the spectrum, this made me think, hard. The developmental gap ever widens between my son and his peers (about 7 years now), and I have fallen into the mindset of stressing about what he can't do, when really I should be thinking 'what do I need to do to help him get to the next level?' Thanks for the wakeup call.

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  11. "...a different type of early sign - the behaviors that indicate that your child with autism might have tremendous potential - tremendous ability. Even if you only see those behaviors briefly. Even if you only see them once."
    I really love this.

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  12. "...a different type of early sign - the behaviors that indicate that your child with autism might have tremendous potential - tremendous ability. Even if you only see those behaviors briefly. Even if you only see them once."
    I really love this.

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  13. Lovely. And indeed, any conversation is wonderful. I remember one when our guy was about six or seven. We had watched a movie in which a dog ran down a street and fell in a river. That night, at bed time, he said something like, "Dog is running, fall in water, and swimming." I walked on air for a week afterwards. It was the first time he had recounted anything. And, as you say, it showed me that he could. And that made us double our efforts to help him be able to do it more often. Nowadays he can recount for hours on end, and I no longer appreciate it the way I should, but it started with stringing three little word pictures together.

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  15. Everyones stories on dialoguing with their children brings me hope. It brings tears to my eyes. My son was diagnosed in April with PDD-NOS. He turned 4 in July. I wait expectantly for the day of our first conversation.

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  16. Thanks for your post! I'm a little late in reading it, but we're going through the same thing with my kiddo. He's turning four tomorrow, and I keep thinking "oh no....I can't get any more mileage out of telling folks that he is 3! :( ). It is so hard not to compare our kids to others, and It makes me anxious. I need to keep remembering that my son is his own little unique individual.
    Chris
    www.acrazykindoffaith.blogspot.com

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