Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Take Two

with 16 comments

Keystone K-48 Bel Air Movie Camera

Image by Capt Kodak via Flickr

Picture the scene: I’ve just put Cubby down for a nap.  I have a moment of peace before Pudding returns home for the day from her preschool autism class.  A phone call disturbs me.  It is one of the researchers from the sibling study.

“I know you have concerns about your son’s development, so I wanted to give you a call before we sent the report.”

I sit down, and breathe in.  I am braced for the bad news.  I am ready this time.

“At this data point, your son does not meet the criteria for an autism spectrum disorder.”

My face is a picture of incredulity.  The camera zooms in to capture my expression.  I remember my lines.  I ask if they are sure, if they scored the ADOS.  I ask if that can really be true.

“Yes.  His scores don’t come close.”

I ask about his self-regulation, motor skills and sensory issues.  I remind them that he is only 19 months old, he could still regress.  Maybe his sister did just that.

“All a concern, but with his language, social reciprocity and joint attention being so good, we just don’t see autism.  We aren’t concerned.  Just keep doing what you’re doing.  We don’t want to see him for another six months.”

She hangs up the phone, and the camera is still fixed on my face.  I have read the script.  I know I should be showing relief, joy, perhaps jubilation.  I want to feel those things, but this is not that kind of movie, and before long, enter the villains, those merciless scene-stealers: Fear and Guilt.  I’m going to have to fight them.  I can handle myself, I do my own stunts.  There will be a montage of battles and victories.

Fear that this scene would repeat itself, just like when the pediatrician claimed my daughter was fine, not to worry.  The pain of finding out otherwise.  I defeat Fear by reminding herself that my daughter is fine, she just needs more support, and she gets it.

Guilt that we missed the signs in Pudding.   That she needed help before, but we didn’t see it.   I let her down.  How do I ever defeat this one?  I remind myself that I didn’t know the signs then.  As soon as I suspected something was amiss, I dealt with it, pursued it relentlessly.  The knowledge wasn’t written into the script until then.  If we’d known then what we know now, it would be different, but I can’t travel back in time.

Actually, I can.  That is the magic of movies.  I just haven’t wanted to until now.  Guilt has kept me from doing it.  I wasn’t ready before to watch home movies of Pudding, but this week I did.  I watched them for Cubby.  And I see it.  I see how rarely Pudding looks us in the eye.  I see how she is fixated on objects around her.  I hear the echolalia that I confused for speaking in sentences.  I see autism in all its technicolour glory.  I see it a little at 12 months, more at 18 months, and strikingly 24 months.  The signs are subtle, but they are there.  But I also saw two parents who are desperately trying to connect with their little girl.  Even when we didn’t know that we had to engage her, that is what we were trying to do.  With that I knock out Guilt.  We didn’t know, but we were still trying.  We were doing our best, with what little skills we had.  Improvising.

And here we are, yet another plot twist.  Perhaps there will be a flashback scene of Cubby staring at fans and lights, or flinching from somebody’s touch to illuminate my confusion.  Maybe the audience will just settle more comfortably in their seats, knowing there is a long time to go before the credits roll.  We really don’t know what is going to happen, whoever is directing this hasn’t shared their vision.  There is a lot of improvisation going on and at times, I wish I could shout “cut” and do a retake.  Whether he is on the spectrum or not, Cubby will make a most charming leading man.  Pudding?  She is the star.  The talented Diva who commands your attention.  I’ll settle for being the supporting actress.  I don’t think there will be an Oscar in it for me, but I enjoy being part of the production nonetheless.

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Written by Spectrummy Mummy

November 22, 2010 at 6:40 am

16 Responses

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  1. Oh, i don’t even know what to write!
    I have been flooded with happiness, joy, sadness, questioning and confusion.
    I recognize where you’re at….I remember being in that same position.

    Whatever the final outcome, you are doing everything in your power to raise the most well-rounded, happy children that you can.
    Xx

    fiona2107

    November 22, 2010 at 6:45 am

    • Right there with you. It doesn’t make any difference to what he needs anyway, so we’ll just see what happens. And right back at you, even on days when you don’t feel like you are 🙂

      Spectrummy Mummy

      November 22, 2010 at 8:19 am

  2. […] This post was mentioned on Twitter by Elise , Spectrummy Mummy. Spectrummy Mummy said: Take Two: http://wp.me/pZNhv-fT […]

  3. Wow! That is wonderful news–and I can understand how you feel-a little disbelieving. Your looking back on video is exactly the way it is for me, I can think back and look at pictures and know without a doubt that the autism was there at 12 months, 18 months and 2 years–yes, definitely. I didn’t know, didn’t know what to look for, and so I missed it. But I was doing my best, I know that too. You are doing a fabulous job with your kids, know that!

    Kim

    November 22, 2010 at 9:01 am

    • Thank you! It was really hard for me to watch the videos, which is why I hadn’t until now. With photos I just deleted “bad” ones at the time, so they don’t show much, but I kept every scrap of video, so I knew it would be painful to watch. It is, but very cathartic too. The funny thing is, I’d day Pudding is a much more social being than her brother.

      Spectrummy Mummy

      November 22, 2010 at 9:20 am

  4. It’s weird isn’t it!
    I’d say Lucas is much more sociable than Harley, which is why I disregarded a possibility of autism for so long.
    But that’s just the thing…..because Pudding is more sociable, a lot of people instantly assume that it immediately disqualifies her even though everything else adds up!

    fiona2107

    November 22, 2010 at 3:53 pm

    • You know, I think she has so much of everything else, that nobody would argue the diagnosis! There might be a social sub-type. I feel like there is still a lot to be studied about the various ASDs, it is a relatively new diagnosis.

      Spectrummy Mummy

      November 22, 2010 at 5:33 pm

    • Someone just told me last night, that they couldn’t see how I could be on the Spectrum because I wasn’t introverted and I liked to dance. 🙂

      Whatever….

      I’m glad you’re doing everything you can for both of your bunchkins regardless of their placement with respect to the spectrum. You rock, spectrummy.

      Laura

      November 22, 2010 at 9:53 pm

      • I am introverted and not good at dancing, perhaps they would tell me the opposite. I love armchair diagnoses. I don’t know why we bother paying a fortune for them when the man in the street can give us their shrewd take for free. 😉

        Spectrummy Mummy

        November 23, 2010 at 7:24 am

  5. I am so pleased about that phone call. I understand your trepidation. I genuinely hope the plot line has no twists.

    DQ

    November 22, 2010 at 4:49 pm

    • I’m surprised that they would make such a definitive statement. I hope not too, but if his turns out to be a sequel, then so be it. Do you know what the sentence is for abusing analogies? I think I’m in real trouble if I don’t stop soon! 🙂

      Spectrummy Mummy

      November 22, 2010 at 5:36 pm

  6. so where to start? first off, so happy you got that call. But I know it feels like a mixed blessing. It’s the “not autistic but what is it?” we’re going through that too as you know. As long as you can get the services you all need, in truth the label shouldn’t matter. Right?

    and then the guilt. oh, the “had I known” guilt. I think we all have that with our first child on the spectrum, especially if it’s your first child. How would you know? How could you know? The only way we knew something was different was because we were comparing our son to our oldest (which everyone told us NOT to do). I can’t even go back and look at old movies because I see the signs everywhere now.

    But that’s the thing, I think. You KNOW now what you’re doing. And Cubby is getting the benefit of that knowledge and that is wonderful. That’s why you made the call when you did, that’s why you know what questions to ask, and that’s why you’re an awesome mom.
    The End. (Fade to Black) 🙂

    akbutler

    November 22, 2010 at 8:51 pm

    • Very true, we definitely have the services in place that we need. Everyone will continue to keep a close eye on him. It might prove more difficult to keep getting the services he needs as he gets older, but then again, he might also outgrow those needs over time. It is a sad matter of geography that you are not having the same experience with Early Intervention that we are. I hope a full assessment as recommended by Dr. Superman will address this.

      Spectrummy Mummy

      November 23, 2010 at 6:36 am

  7. Congratulations on the phone call! The guilt, oh the guilt. I have only recently released myself from guilt regarding Kelsey’s cranio-facial issues and not even started on my cancer business. Try to let it go…we all have it for something. SO, so glad about the phone call!

    Jen

    November 23, 2010 at 1:48 am

    • My reply to this way WAY too long, so I emailed you instead. Suffice to say…yes, let it go!

      Spectrummy Mummy

      November 23, 2010 at 7:22 am

  8. […] that Cubby also had some special needs, thinking they were more severe, then learning that they probably aren’t.  It has been a big year for being confused, and being worried. Aren’t they […]


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