Monday, April 13, 2015

Regression / Light it up True April 13

I will never forget the first time I heard the words "autistic regression syndrome".  Well, actually, I didn't hear them.

We had gone to our first pediatric neurologist appointment, armed with a timeline of what happened, having had a 20 minute eeg, and hoping for answers.  What we got instead were those three words, written on a prescription pad.  He didn't even say them.  What he did say what that this was a phenomenon they were starting to see a lot of and no one in the neurology field could figure out why. 

At the time, our insurance would not cover anything for an autism diagnosis, so I begged him to change the diagnosis to Aquired Aphasia which got us some insurance coverage for a little while. 

We left that appointment with no resources.  No support.  No direction.  Nothing.  We came home and both sobbed.  I was so rattled after leaving that appointment that this was all I could write.  The pediatrician disagreed about IVIG, and in hindsight I'm glad because I don't think that was the answer then or now.

It took me about a week, and I got my hands on Jenny McCarthy's book Mother Warriors.  While I cried my way through it, that book put steel in my spine like nothing else could have.  It prepared me for a marathon.  Even though in my head I was convinced he would be recovered and neurotypical by kindegarten, I think I knew we were in for a long road.

Now, reading the stories of my co-authors at TeamTMR, I know we were far from alone.  *All* of our stories are the same - our kids were fine, and then they weren't.  A whole generation of parents does not have defective parental instincts and its insulting to say that we just didn't notice the issues until the regression.  Its also insulting to say that we are imagining the regression. In the grand scheme of things, because we waited until Dominic was 2 years old before we started shots (due to a nearly life ending reaction by our niece), his regression at 3 is considered a very late regression.  Its also much harder to deny a child that was one day speaking in sentences the next was incapable of forming words.   We were not alone in seeing the regression - easily a dozen mom friends of mine remember pre regression. 

I'm here to tell you there is nothing more soul sucking than to watch your child fade away before your very eyes. 

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