The change

I never noticed the change. Roman was about fifteen months old and we were preparing for our oldest son to undergo a major surgery. Tycen would have four surgeries in less than a year on his legs, landing him in a wheelchair for nearly half of a year. Eric and I were fully focused on Tycen and his recovery. Our other two children were well fed and clothed and we gave them what we could in the way of attention, but unfortunately, things slipped through the cracks. Roman’s regression was one of them.

from my current work in progress

I am writing a memoir of tackling Roman’s autism, from thinking that there was a slight possibility he had a delay through the progress he has made thus far and on to the 48 weeks of the Buspirone trial.

This passage is as good of a place to start as any, I suppose, because it takes me back to the very beginning.  According to a study done at The University of Michigan, 20 to 40 percent of those with autism develop normally and then regress.  For many, this regression happens at about 18 months.  Roman’s regression happened a little earlier.  I’m guessing it was at about 15 months.  I am guessing because I don’t really remember.  I feel horribly guilty about that in retrospect, but at the time we were nearly solely focused on getting Tycen out of his wheelchair.

According the the U of M study, 77% of those suffering from regression of verbal skills also lost non-verbal communication skills.  These children stop eye contact and responding to their names.  This fits Roman perfectly.  He was a very attentive baby and loved to smile when he looked at our faces.  But somewhere in the 12 to 15 month old range, that stopped.  He quit looking at us when we called his name.  The baby I had once known was locked up inside his own body.

Roman was actually an early talker.  I remember him calling for me, saying “mama” and getting excited when “dada” got home.  He was saying “no” and “Tawn” (what he called our daughter, Tanis) well before he was a year old.  Now, he uses “mom” and “dad” rarely and has not gotten “no” back.  He still doesn’t vocalize his siblings’ names.

This rebuilding of a vocabulary is painfully slow, but every time he says a new word, it is a huge celebration in our home.  Most of his “words” now are actually word approximations like “eee” for eat, “buh” for “bye”.  Sometimes, though, he spits out a perfect word out of nowhere.  Then, we won’t hear it again for weeks, months or maybe not at all.

Roman has had great successes in communication though.  I will talk about some of them more in depth later, but he is skilled at using the Picture Exchange Communication System, or PECS.  His eye contact is getting better every day.  He responds to his name.

Slowly we are getting my boy back.  Every day is a new adventure and I know that the future is bringing so many more advances.  Stay tuned faithful, we WILL get there.

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