Sunday, October 24, 2010

Autism, The World Series, and Me: An Anniversary

Today is the 5th anniversary of the day that I realized that Audrey had autism.  It wasn't the day that we received an official diagnosis, but the day that I knew.  To commemorate this auspicious occasion, I'm posting an excerpt from my never-gonna-be-published book.  Today is Part I, which tells the story of the ton of bricks that fell on my head on that day.  Coming tomorrow in Part II -- how autism crapped all over my World Series parade.


The only reaction this should
elicit is "What in the hell was
up with her hair?"  But instead
it reminds me of that day.
Monday, October 24, 2005 was a beautiful fall day in Northern California. I was stopped at an intersection not far from my house, when I had a sudden and certain realization. My daughter has autism. A light bulb went off as if I had just realized that I’d forgotten to take a pill, or send a birthday card, or turn off the oven. The fallout from this was likely to be slightly more life-altering than having a bout of heartburn, pissing off a friend, or even burning my house to the ground, but somehow the initial jolt was a similar sensation. Then came the after-shocks.

No, wait. That can’t be right. Can it? No. I don’t think so. But. Is she? Maybe. No, she is. I think she is. She definitely is. Absolutely. No way. You think? Wow. Really. Autism.  Everything had been fine just seconds before, and now nothing would ever be the same. Audrey was in the back, flipping through books in her car seat as she always did. Nothing had changed about her in those few seconds but suddenly my perception of her was completely different. She was no longer just a late bloomer or an introvert. She had autism, a neurological disorder from which she might never recover.

That morning, we’d had her 18-month doctor appointment. Not much had changed since her 15-month checkup. She still wasn’t crawling right, let alone walking. Nor was she talking or pointing or in any way trying to communicate. She couldn’t do where’s-your-nose or play peek-a-boo, didn’t answer to her name, and her eye contact was poor. There were some new developments, but they were uniformly disturbing. Her disposition had progressed from fussy to surly to exorcism-ready. She had lost all ability to play appropriately with her toys. And the latest trend was her becoming increasingly upset to the point of inconsolable when she heard the cries of another child.

The pediatrician never uttered the word autism at that appointment, and only made vague comments about developmental delays. She said that she had seen this sort of thing before, and that the children were usually caught up by the time that they were in first grade. First grade? I was incensed! She was only 18 months old and she was already making a judgment that she would be hopelessly behind until first grade?

After the checkup, we headed to Audrey’s weekly physical therapy appointment. We had started PT at 11 months. At the time, I thought that it was just a temporary thing. She just needed a little jump start to get her going. Karen was a great therapist, and Audrey had made a lot of progress over the 7 months that we had been seeing her. She had been commenting all along about how Audrey reminded her so much of another little boy that she had worked with. She brought Ben up frequently, and, when Audrey developed the new habit of repeatedly flinging toys over her shoulder, she again mentioned Ben and how he had done the same thing. They were so much alike, Ben and Audrey. I knew that Karen dealt with all kinds of different kids with a myriad of disabilities, and I had studiously avoided ever asking her what exactly was wrong with Ben. But on the day of that 18-month appointment, I related the story of what the pediatrician had said about Audrey falling behind and not catching up for five or six more years and awaited her horrified response. But she clearly did not get the script that I was telegraphing her. She wasn’t shocked and disgusted. In fact, she didn’t say much at all. A few minutes later, she brought up Ben again, and I finally blurted out, “So what exactly is the deal with Ben?” She said, “He’s autistic.” And just like that it began.

My number had come up. I was ordered to report for duty. I could not imagine the battles that lie ahead.

39 comments:

  1. wow...you certainly don't forget a day like that, do you?

    Brian was different.....I don't think I wanted to think that word...but I remember after the eval the person asked me if I had any ideas and I said something like, "Well maybe autism?"

    So I guess I had been thinking it, just didn't allow myself to.

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  2. Lynn so touched by your story.
    i can feel your pain
    We were completely in denial and had to be told at 26 months- told very cruelly too by an idiot psychologist
    Still I am grateful we got no sugar coating as it got us in high gear immediately
    I do wonder though if there is a way to communicate the urgency without the unpleasantness for docs and psychs doing the first diagnosis

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  3. This was awesome to read. We're a shit load alike.

    Bea had really stupid hair for most of her baby and toddlerhood.

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  4. wow. great post. you and tulpen are a lot alike - both of you need to write books, you are both truly gifted writers. that picture of audrey is so cute.

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  5. Lynn, that was a well written post- you should get published today! I'm so glad to be a part of Audrey's journey. :)

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  6. 3 things:
    1) That picture of baby Audrey is adorable, and the hair just adds character
    2)Your excerpt was so well-written! I want more!
    3)It's funny how we can remember these defining moments in our lives like they were yesterday. You described the moment of clarity perfectly.

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  7. Is it still considered "self publishing" if I publish your book and you publish mine? Well done. I hear your voice and I love it. Sucks that the publishing industry is so focused on celebrity and platform rather than funny and compelling stories that need to be told. But, at least, if you post more excerpts, I get to read the book without paying for it.

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  8. Isn't blogging publishing?

    I'm grateful for your story as most of the ones I read are similar to K's - shocking and impersonal pronouncement from an authoritarian physician.

    Wondering whether you think your gradual self-realization is preferable? Looks to me like the PT and your pediatrician were working on that premise. Barbara

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  9. A) you'd better write that book. I'll take a shout out in the acknowledgment section. Or I'll write your foreword. Whatev.
    B) same here. All of it. Of course you know all this already. Started with PT for the delayed gross motor, knew she'd catch up by 4 or 5 (still waiting... Or am I?), fishing for comfort and a crystal ball from every therapist, doc, passerby, etc!
    C) funny kid hair.

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  10. I agree with Big Daddy! Your book would be awesome, I have no doubt. I LOVE Audrey's hair in the picture! She has a pretty amazing head of it.

    My experience was so different. I never had an "AHA" moment that my daughter was autistic. That could she be, no she isn't went on for a full year (from 3.5 to 4.5). Like Audrey, my daughter was a late walker, but she didn't start PT until 18 months. The PT, working with my daughter for 7 months thought my daughter was fine, just low muscle tone. At the end of doing PT, she gave my daughter the thumbs-up, saying I have nothing to worry about.

    When I began to suspect "something" was up (what I had no idea), her teachers reassured me that all was well. Even when I FINALLY went to get her assessed at 4.5, I didn't think it could be autism but something else (okay, Asperger's was beginning to occur to me).

    I'm looking forward to reading part ii tomorrow.

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  11. When you do get the book published, I'll seriously buy it for everyone in my family. I love how you tell it like it is :)

    I had the same thing, at 12 months. I finally got up the nerve to google the diagnostic criteria for autism, and yup, she fit every single '4 traits from this area, at least one of these, two of those' on the criteria.

    For some reason all the 'professionals' kept telling me she was NOT autistic until this past summer (4 years!). I don't know if it was because I was youngish (23 when she was born), but it absolutely drove me nuts.

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  12. I'm impressed that you remember the date it happened. I remember the AHA moment but not the date. I'm not nearly together enough to know the date on any given day anyway.

    Beautifully written as always. You have a gift for conveying so much with so few words.

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  13. I only have one question: What the hell was up with her hair???

    ((((((YOU))))))

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  14. I vividly remember the moment when I considered the possibility that GL might be anything other than a brilliant eccentric. I felt as if I had somehow betrayed him. As if considering the possibility that various professionals (who never seemed to see him at his best, and who refused to believe us when we gave examples of things he routinely did at home) were right, somehow made it happen.

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  15. It is amazing how much remember.. when we finally realized how "different" our child really was from the rest of the world. Reading your post brought back a wide range of emotons for me.

    *hugs*

    Your an amazing mommy and your daughter is lucky to call you hers

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  16. @All: You'll see tomorrow why I remember the date so well...it's not too hard to consult the internet and find out which date fell between games 2 and 3 of the 2005 World Series.

    I love hearing everyone else's stories of how the "news" was delivered...and yeah @TherExtras, I'd much rather have it happeen my way than the way K was treated. At the neurologist appt a couple of weeks afterwards, he wouldn't diagnose her. No one wanted to do it before she was 2. I had to go elsewhere and fight for it.

    @Cara: I hate to be a conspiracy theorist, but I really felt like they were trying to delay giving me the free Early Intervention services.

    @PapaBear: I totally get what you are saying. I think it's called the bargaining phase of grief where you think that you can control fate with your thoughts.

    @dotcomkari (and all): Thanks so much! I love my autism peeps!

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  17. First of all, MY GOD that kid is gorgeous! My kids were Q-balls til almost 2.

    I can't remember the exact aha moment. But I know it was either the day a therapist suggested she has some autistic tendancies at 18 mos (the therapist,btw, is actually a really nice person who's guts I will always hate) OR the day that same week this other mom stood next to me at observation window of speech group comparing my kid (outloud) to her kid with autism. (she was weird, she kept saying "We have autism." --talking about her son and her, even though SHE didn't)--I hate her too.

    I then proceeded to hide my realization from my husband for about 6 months. (couldn't find the words to tell him and I knew he wouldn't believe me) When I finally told him, he thought I had lost my mind. Couldn't believe my level of worrying about her speech delay had escelated this much.

    She's 8 now and I think he's nearly convinced of the diagnosis. I think he's even said the A word a couple of times.

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  18. Thanks for sharing! I found it interesting that Audrey cried when other kids cried. Cody use to do that. It tugged at my heart strings.

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  19. Reminds me of my sister (tulpen)'s story. Really well written. Don't give up on the book.

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  20. Lynn, you are such a gifted writer to share something so personal in a way that connects everyone who reads it to you in that moment. Thanks for the glimpse into your journey.

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  21. I am anxious to read tomorrow's post and, eventually, the whole book. Thanks for sharing your story.

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  22. I have autism, I always remember being dragged to all sorts of people I didn't/don't like and I never really knew what was wrong 'till I was older, though no one directly told me, but I never felt any different or better when I found out. Out of all those people I was dragged too, I've only liked two or three.. or one, so you're lucky to of found good ones early :) It's interesting to read it from a Mommies perspective

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  23. What a wonderful writer!

    It is YOUR story for a reason.
    You seem to be connecting hearts in a way that only one going through it can.

    Keep sharing and inspiring!

    If it is your dream, you will have a book.
    The main piece is already in place.
    YOU, the artist- literally painting your life through words !

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  24. those AHA moments are like living a lifetime in a nanosecond! write the book, please!

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  25. Great post!

    Audrey is adorable in the pic and I love the hair. Your day sounds very similar to mine(except mine was 6 1/2 years ago). I was researching language delays when it hit me. Nothing was ever the same again.

    pps

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  26. @Kat: Hopefully Audrey will have better memories...we have had absolutely wonderful therapists and she has seemed to adore them all. It will be interesting to see what her "aha" moment is like when she realizes that not everyone has all of these friends/teachers/therapists.

    @Reyna/aimee/only/kathy/mindi/all: thanks so much for the encouragement. I'd love to get my book published, but I'm not a former playmate with a celebrity "platform". I would pose nude if it would help, but I know no one wants to see that.

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  27. interesting.

    I am wondering if we went to the same doctors since we were there too in 2005 in san jose and santa clara area. We went to 3 different practices and not one of the doctors would say autism. we were never diagnosed until we moved to PA.

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  28. I remember my shock and outrage when I read the possible diagnosis from the child study team about my son. You never forget something like that.

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  29. @kim: we should talk sometime. Did you by any chance see Dr. Guarino? I swear there was a deal between him and the guy who ran Santa Clara County Early Start to not diagnose.

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  30. I remember that day. Well, not your day, but ours.

    And I always hated that pointing thing you mentioned. At every damn appointment and evaluation they asked if he was pointing. If not, how did he show us things, since he couldn't talk. I don't know, he just does, was my angry response. I just didn't get it at all. But now that I have a neuro typical baby, I totally get it. He points at everything. He really does use it to communicate. Hm, imagine that?

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  31. idk the name sounds familiar, he could have been at one of the practices of groups we saw. we were at camino medical group, santa clara location and mountain view location, there was another one and I forget the name and we also went to stanford medical center at stanford

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  32. Found you through BiG Daddy Autism.

    You wrote this a month after my daughter was officially diagnosed at the Erikson institute. It was the pink elephant in the room for months with her therapists. With our oldest daughter the day we walked out of the evaluation they told us she did NOT have Autism. When we went back with our youngest for her evaluation they didn't tell us that. That's when it sunk it. A week later it was in black and white and the reality set in. September 18th 2010.

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  33. How frustrating that the ped just sort of brushed it off with vague statements.

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  34. I am also surprised the ped didn't think to do further testing.

    Happy SITS day.

    LisaDay

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  35. Wow, your story is heartbreakingly well-written. Great blog!

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  36. I can't say I understand per se, because it was my brother who had delays and he had them from the day he was born. However, I do recall the moment when I had to realize I am a carrier. A 1 in 4 chance carrier.

    Those moments are the calmest and yet most profound in our lives. I applaud your efforts in the every day successes (for those are the most rewarding).

    Happy SITS day.

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  37. My little girl has autism too. I also live in Northern California. What part? It's so rare to find other people who have girls with autism.
    Im in Sonoma County. Can't wait to read more on your blog. bless you

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