Tick Tock

Thursday, October 10, 2013

I had the dubious honor of learning that a pregnancy after having had one child on the autism spectrum means being bombarded with variations of "soooo... what are the odds this one will be autistic too?"  Ya know, because people are always so tactful about deeply personal things like reproduction.

For the record, the latest numbers put the odds for my second child at 26%.

We told ourselves that the odds were on our side.  We told ourselves that we knew what to look for. We told ourselves we would know what to do.  And we hoped.

By the time my precious little Dude was 8 months old I could no longer deny he was missing communication milestones. By 10 months old it wasn't getting any better.  I knew what I was seeing because we have unfortunately been there, done that. At 11 months, I called Early Intervention. For his first birthday, he got a full blown evaluation.  They found a significant speech delay - my 12 month old was communicating at a 4 month level - and a borderline cognitive/developmental delay.

The best thing I can say about all this is at least people stopped saying "aren't you glad this one is normal?" (File Under: People I Deserve a Medal for Not Throat Punching)

Just a few weeks after the Dude's initial EI workup, Bear had his routine neurology checkup.  I went in knowing I had to ask a question I deeply, desperately did not want to ask.  But the Dude was 14 months old and the clock was ticking... I was painfully aware that 15-18 months is the age regressive autism commonly sets in.

So, I asked him. "Is it possible to have classic and regressive autism in the same family?"

He said yes, of course. I told him that was the wrong answer.

He was quite concerned about how things were going with Dude and was glad to hear we already have him in therapy through EI.

It's been several months and we saw him again this week for Bear's checkup.  He was, of course, interested in that wrinkled eyebrow, frowny face doctor way when I told him the Dude had slightly regressed developmentally, developed dangerous sensory seeking behaviors and was now up to 3 EI therapies a week.  I asked him if he thought a Developmental Pediatrician might be a good idea; he said absolutely and quickly recommend two he has worked with.

The thing is, I don't want my baby to be an interesting case for one of best pediatric specialists in Chicagoland.  I don't want my kids to be so fascinating that the fancy doctors tell us we ought to have a genetics study done.  And I really don't want a Very Important Doctor to tell me I should take my baby for a consult with one of his colleagues. 

I know I'll get in trouble for saying this, but I'm gonna say it anyway: I don't want my baby to develop autism.

I can already hear the haters and the trolls warming up their keyboards.  But seriously? They can suck it.

This does not mean I love my autistic son any less.
This does not mean I will love my baby any less if he does develop autism.

I love both my boys with the full ferocity of a mother's heart.  More so, even, because the world is not a welcoming place for those born with different brains.  And it tears me apart knowing they will have to work so much harder to find their way.

I watch the days and weeks tick by and I wonder what will happen.  The Dude is doing very well in therapy, and we celebrate his successes.  But there's a shadow clouding my joy.  Because what if?

He's definitely got Sensory Processing Disorder.  We will not be surprised if he receives a Language Processing Disorder diagnosis. The speech therapist was happy to hear that we'd scheduled a hearing test because they're seeing the same things that concern us... and the hearing test was fine, which sets us on a path for a potential Auditory Processing Disorder diagnosis someday.  The red flags marking the path to a place on the spectrum keep piling up.

My precious little Dude is the joy of our family.  He is loving. He is engaged.  He looks into my eyes and smiles and - a year belated and coaxed out with endless months of speech therapy - says Mama.

He is a force to be reckoned with. The sun at the center of our family universe, his gravitational pull brings Bear out of his world and into ours more than anything we've ever tried.  The Dude is not just a gift himself, he gave us the gift of a richer relationship with our Bear.

I find it both easier and harder to raise a baby who notices my presence, mimics my actions, wants my attention.  And bittersweet; it was almost better not knowing how much of this I missed out on with my beloved Bear.

I hear stories about how devastated parents are when their children regress into autism and, honestly, I've been grateful that my Bear was a classic case.  Because I couldn't imagine the pain of bonding with your child and then watching that fade away.

Except that now I can. And it scares me to death.

I'm scared that all I may get is another few months with my Dude before he follows his brother into the internal world he so happily inhabits when it's autism's turn to have him.

I'm scared I'll forget what it was like, to have him smile at me and lift his arms to be held.

I'm even more scared I'll remember what it was like, and the pain will be too much too bear.

As with any child, I carpe every diem with him.  And I watch the calendar.  And watch for signs.  And wonder as each tomorrow dawns if this will be the last day he looks into my eyes and smiles.