Severe Autism at 3?

I've been in this autism game what seems like a looooooonnnggg time.  12.5 years since the first diagnosis.  Of course, I was playing the game incognito for 2.5 years before that.   'Cause I didn't know what was going on.  And how the shit was about to hit the fan.

And I see these poor souls hanging out in the low functioning autism boards with toddlers that have a diagnosis, and I think "What's up, homies?"  Because they don't know for sure that LF (whatever the hell that means) is where they really fall.

What I do know is that you don't know what's going to happen.  The future happens with a little input from genes, a little input from therapy, and a lotta sweat equity from all the folks who believe in these little people.

We started out with two autistic kids.  Because 3 weeks after diagnosis that's what we had.  One autistic toddler, and an infant-in-training. 

Toddler had NO speech.  Zero, zip, nada.  Did not develop real speech until around 5.   Did not develop early conversation until around 8 or 9.  Did not potty train until 7.  Was granted a diagnosis of mental retardation by a stellar idiot at 7.  Is still nicely autistic, but has made the honor roll the first 3 quarters of this year.  Plays in the band and sings in the chorus (doncha know that's how to meet girls?  I'm not kidding.  The ration is like 10:1 in there.)  Still has lots to learn, but, man, makes me proud every single day.

Infant-in-training watched all those language videos with brother.  Had 50 words at 2 years.  And proceeded to use them for NOTHING for the next 8 years.  Was severely hyperactive.  Had poop smearing.  Has ongoing self-abusive behaviors and aggression.  But finally, starting around 10, is starting to verbally communicate.  And is smart as a whip, with a wicked humor.  He also makes me proud every single day.

My point is, that at 2 or 3 or 4, YOU DON'T KNOW.  Your child may seem severely affected by autism, but then make huge gains.  The statistics seem to be in favor of that.  When they are little and have not learned to cope with their very sensitive nervous systems, of course they are going to look severe.

So you have to keep moving.  You can't assume that because some MD or PhD said "Severe" that means forever.  You have to keep trying.  You have to keep intervening.  You have to keep learning.  You have to take breaks, and come back refreshed and ready to try again.  Because it IS slow sometimes.  But it is ALWAYS worth it.  When you try things that don't work, you know it doesn't work RIGHT NOW.  But maybe it will work next year.  Or maybe it will be helpful to that parent who needs some advice. 

Because someday, YOU will be the person writing this.  The person with 15 years of experience teaching autistic children.  The person who has gone to numerous conferences and lectures, read books, have more books on autism than a NYC library.  The person with experience in dealing with autism.

And you'll think "SHIT!  I did learn a lot.  And what an amazing, unpredictable journey this has been."


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