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.

13 comments:

  1. Yeah it's pretty devastating when your above average child develops normally and it's ripped away by the big nasty A word.

    It's been almost 4 years and even though my son is coming back to me, I'm not over the robbery that occured and what it's costing him, still.

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  2. I cried a little with my first, my second I was ok with, they handed me the diagnosis for the third and yea I lost it lost it....It's ok because all of us wish our babies didn't have to go through this and that one damn thing could be normal...

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  3. Hey there. I also have two children on the spectrum and understand so much of what you are saying in this post. We participate in a sibling study here at an autism center in Atlanta. My youngest son is also going there to be monitored. I expect a diagnosis for him also. She did give me hope. She said that what they are noticing is that almost ALL siblings develop atypically. It does not mean autism. 25% have an 'autism-like speech delay', if this means gestalt processing or just a speech delay in general, I am unsure. Whatever happens, know you're not alone. You'd think going through it a second time, it'd be easier. Its not. Reach out, seek out understanding from other spectrum mommies. Its a tough road but you don't have to walk it alone.

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    1. Thank you so much. And you're right, the best thing that ever happened to me was reaching out to other spectrum parents and finding support and community there. I resisted at first, back when I was in denial about being a special needs parent (oh those silly, clueless days). But I finally did and it was life changing - the support of my core group gives me strength and makes me smile every single day.

      I really appreciate the information about atypical development sans autism - that's certainly what we're wishing for and it gives me hope to know there are numbers to back it up. : )

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  5. twitter: LisasLebenOctober 10, 2013 at 5:44 PM

    There is NOTHING wrong with saying you hope your son doesn't have autism. If I could take autism away from my daughter I would do it in a heartbeat, and I don't care who that pisses off. It doesn't mean I don't love her. What it means is if I could make her life less of a struggle I would.

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  6. Oh I so remember these feelings. Even knowing, seeing the diagnosis on paper for the second child was like a kick in the gut.

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  7. I completely understand!!! My DD was dx at the age of 3 and now it is a year later and mt 17 month old son was dx at 13 months! my daughter was classic....my son?? he was developing 'normally' until 5-6 months I guess....we started EI right at 9 months his communication 'score' or whatever was a 2!!!! A 2!!!!! and I still have peeps asking, "autism???really????" Now I will say that EI is a joke here, he get's speech therapy with them 2 times a month and that is it. so I take him to private speech, private OT once a week, ABA 5 days a week, and I force social play dates on him. My daughter has the same grueling schedule but add Special Ed preschool 4 mornings a week to hers. This is what I think. My son might very well NOT have autism but I will take that diagnosis if it gets him the help that he needs and later if the dx 'falls off' then so be it.
    Bottom line is this, I still am trying to process everything about both of my kids but I will do whatever it takes to do what is best for them. You are a great mom fighting for your kids and processing everything all at once. I get it. I get you.-smile-

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  8. It doesn't make you a monster, an asshole, a bad parent or anything even remotely in those categories. Hoping Dude doesn't have autism just means you love your son with all your heart and want him to have the least amount of obstacles in his path as possible. That's called "being a mom."

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  9. I can only imagine the emotions you are being consumed by right now. So much love and so many hugs to you.

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  10. I am there with you - I have 4 diagnosed with ASD and one with PDD...I lucked out with the last one who appears to be "typical" so far at almost 5 so I think we are safe there....my favorite comments "you should have your own reality show" or "you are definitely a case study in genetics!" Like really? Like we don't have enough to deal with? I love my children - every hair, every cell, every thing!! but do I wish that autism was not a part of their lives...oh yes, yes, I wish autism never passes my lips when in conversation. But you will get through this, no matter what the future holds, because you are his mom and you love him and you will do whatever it takes to make his life a good one. You're not alone ((HUGS))

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  11. Wow, I am new to your site and was giggling my way through the first few posts re candy etc and then got to this one. You have a real gift for light and dark lady!!!! Totally snuck up on me with all those...FEELINGS! But I feel you for sure. My son is on the spectrum and so am I, and while I wouldn't give up who we are for anything I do see certain things are so much more challenging for us than they are for my neurotypical husband and daughter. I bet as a mother that's the key, right? Who wants to see their kids suffer...or worry about how they will fare on their own? Love,

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