Let Her Be

Autism still lives at our house.  And because Nea is doing so well, it seems that some wonder if Autism really lives here at all.

This is a post that probably is going to come off snarky and mean....but I truly don't mean it to be that way.  I want all persons who come in to contact with an Autistic person (adult or child) to understand that good days and bad days happen.  I want folks to understand that therapies make a difference in how my girl interacts with the world.  It's important you know that Nea's progress is because she works hard, she is surrounded by a supportive network and she's one damn determined girl.

But there is no cure.  Let me reiterate.

There is no cure for Autism.


"She's doing so well.  I would almost say she doesn't have Autism"

Aside from dropping my jaw to that comment.  I simply replied.  "Come live at our house"

In an effort to keep Nea from regressing while school is out, we do some sort of school work daily.  Her teacher gave us ideas to do daily with her and my Mom bought this really cool workbook full of activities for Pre-K kids.

We were working in the workbook the other day tracing the letter A and B.  A is an easy letter for her because her name (Ántonea) starts with A. However, B proved to be a much more difficult task.  She grew frustrated quickly.  She grew so frustrated  she slammed her head on the table and threw the green marker across the room.  I let her express frustration, but I draw the line at throwing objects.  I told her to pick it up, which she refused.  She had thrown herself to the floor, and began hitting herself repeatedly.  It was hard to decipher tantrum vs meltdown with this one and decided it was a combination of both.

Her frustration with the letter tracing took over quickly.  She kept saying, "I can't do it.  I can't do it."  And when I offered hand over hand with her, that seemed to make it worse.   I think the throwing the marker was 4 year old tantrum about the situation and had to be addressed.  She was distraught.  She was screaming, crying, flailing all over the floor.  I had to physically pick her up, take her to the green marker, use my hand over her hand to pick it up and then hand it to me.  The whole time, staying calm and using a reassuring voice while being assertive.  Hell, is that even possible?  I don't know, but eventually she collapsed into my arms, shaking and cried herself to sleep.

Yah, come live at our house and watch her spin constantly in the middle of the living room.   You'll never wonder again if she has Autism.

"She really enjoys other children.  She sure doesn't act Autistic"

 Yes, she really does enjoy the company of other children.  But have you seen her try to play with them?  She doesn't understand the social rules and as she gets older, it's really starting to become evident.  Younger kids are given a "pass" for awkward social behavior.....older kids are not.  I watch her on the playground and it just breaks my heart.

She will run up to some random kid and yell " Tag! You're it!"....running off.  The kid (having no idea why he was suddenly tagged) just looks at her oddly and runs off.  So she then goes back and starts yelling at him like a dinosaur.   She will walk behind him, growling like a dino for quite awhile.  Finally the kid will turn to her and say, "Stop that!  Get away!"  And she will turn, head down....and walk away.  It makes me cry every time.

We talk about it of course and often times I try to facilitate play with her and another child...usually a younger one.   But more often than not, this scenario plays over and over again.  Every once in while, another child will connect with her and she is blissfully happy playing games, running and giggling.  They are hard to find, but I am grateful when we do.

She wants friends.  She wants to connect.  And we have to work on how to do it every day.

"I'm sure she'd be just fine mainstreamed.  When she goes to kindergarten, you won't have to worry about special needs classes.  That will be too hard anyway."

*sigh*  I don't know.  And if I don't know, you certainly don't either.  I battle this one often in my own head.  Her IEP works so well for her that she is able to navigate her outside world very well.  Should I then take it away?  That seems counter productive.  I can't even begin to think of that sort of decision without input from her therapists and teachers.  It just seems odd to me that we would take something that is allowing her to be so successful and put it on a shelf.


Yes, Autism still lives here.  There is not a day that goes by that I don't see it rear its ugly head.  Please don't diminish Nea's hard work, courage and strength by telling us that "she seems so perfectly normal."  (a word I dislike anyway).  She really has Autism.  And we really have to address every single day.   Her family, her teachers, her therapists will work diligently to give her all the tools she needs in this world.

Let her be Autistic.