If I knew then what I know now....

My baby boy is almost 16 years old.  In another life he would be getting his driver's permit.  He'd have a girlfriend and I'd be reminding him to take condoms everywhere he went (not that he'd necessarily have sex, but I believe in wearing seatbelts and carrying condoms.  Just in case.) 

And he'd be on the honor roll. 

Except he already is.  Has been every quarter for the last year and half. 

And he has a girlfriend.  Not that they go anywhere together.  But she kissed him.  Which is more than I had before...18.

He's not ready for a driver's permit.  That's the fact, Jack.

And we discussed condoms.  And I'm pleased to say he blushed.  But he got the message.  And we talked about consent.  And how even one 'No' stops the action.  From either side.

How I'd like to go back to that day when we cried the whole three hour drive home from the developmental specialist's.  My former teacher.  Who told us how he fit the criteria for autism.  On the way home we argued that he didn't.  That I had stacked the deck against him when I filled out the forms.  We listed all the ways he wasn't autistic.

And the next morning I woke up to my husband crying.   "All I can think about is all the ways he IS autistic."

And he is.

And it wasn't the end of the world. 

This probably should be written on his 16th birthday, which is still over 2 months away.  But today I got to thinking about how he's grown.  Six months ago he was shorter than me.  Now he's 2 inches taller.  4 inches in 6 months is pretty remarkable. 

And he's thinking about sex a lot more.  He copped a close look at a friend's (clothed) boobs.  And blushed.  He blushes when I talk about wrapping up his penis. 

He's such a teenager.

And he's autistic.  Unmistakably.  No cure here.  In spite of the shit ton of DAN! stuff we did.  Which I don't really regret, because *I* needed to do it.  But I don't think *he* needed to do it.  

He's amazing.  How I wish I could have whispered that in my ear those 13 years ago.  That we needed to work our asses off, but not live in fear.

If I knew then, what I know now....

I would know that my soon to be born child, his baby brother, would also have autism.  So much more autism, as we say here, than Sam does. 

I would know that we would still be waiting for that heart-lift of feeling that he might some day be independent even now that he's a teenager. 

I would know that I would still be dealing with a kid who wets his pants at 13.

I would know that the medication treadmill is a tricky thing that suddenly throws you against the wall just when you think you got it. 

I would know that PECS (and now an AAC) is not just a means to verbal language, but might be forever communication. 

I would know that puberty can be a lot trickier than explaining consent to a kid who has trouble identifying other people's facial expressions and motivation. 

I would know that speech is terrific, but it's not a panacea. 

I would know that it takes a village, and it's a hard row to hoe if you don't have that village.

I would know that it can be pretty isolating to have a severely limited support network.

I would know that living in limbo is not the worst thing in the world.

Autism is a disability of unanswered questions.  Where questions may be open for years.  Or decades.  Where having more ability in one area is not a guarantee that you will be able to function in another. 

I would be better off not knowing.


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