I guess you need some background

by Jennifer on June 30, 2011

I suppose I should have done this at the beginning, but I’ve never been one for following the logical steps. 

This website just sort of happened rather spur of the moment as a result of a series I did on travelling with special needs children.  Originally this 3 part series was published at Who Wants to Know.   It was then picked up by a travel agency and posted on their blog.  Rather heady stuff to know that people want to read what you’re writing.  After discussions with friends and with my partner I decided to start writing about our life with autism. 

It’s been a hard road to get here, I won’t lie.  My daughter was diagnosed when she was 3 1/2 years old.  Looking back it’s easy to see that it was always there, but with two kids under 3 just getting through the day was an accomplishment.

At about 3 we started to realize that she just wasn’t just slightly behind in her communication, she was falling off the scale.  Around age 3 is when children start realizing how communication works and start putting two and three word sentences together.  She never made this leap and to this day most of her functional communication is one or two words….want juice, go bed, etc.

A lot of her communication is also echolalia.  Think about that old George Burns skit (oh my, I’m dating myself)….”say Goodnight Gracie”….”Goodnight Gracie”.  Yep, like that.  Pretty much anything you say to her will be repeated back.  It’s hard because when you’re trying to tell her what to say “Say Hello”, she repeats “Say Hello”.

She also repeats lines and scenes from Dora and Diego.  Those are her two favourite shows and she has every episode memorized.  Echoing from existing scripts is pretty common.  I‘m going to refer back to Mom-NOS and the presentation she gave to her son’s class.  She talked to them about why Bud repeats things from tv and again, she explains it better than I ever could.  Go read it.  I’ll wait.

OK, so now you understand about scripting and echolalia.  Since almost all of my daughter’s communication is through functional language (to get a need met) and through scripting and echolalia, you can see that it is pretty one-sided.  She can tell you what she needs or wants but she can’t answer your open ended questions.  There are no after school conversations about “how was your day” or “what would you like to do today”.  Most of it is just guess work.

There is a lot of guess work in autism.  Guesses as to causes, cures, therapies, treatments, etc.  But it’s the guess work that occurs at the daily level that is tough.  You have to guess….will she wear these shoes, why is she crying, what caused this tantrum, why won’t she eat her favourite food, etc.

Some days you guess right, some days you guess wrong.

{ 1 comment… read it below or add one }

KJ and the Kids June 30, 2011 at 4:36 pm

And I’m sure guessing wrong will, for obvious reasons, bring on more tears and tantrums.
You are an amazing mom to a wonderful little girl. Keep up the good work.

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