Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘home movies

Take Two

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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.

Written by Spectrummy Mummy

November 22, 2010 at 6:40 am