Sunday, June 26, 2011

A little history

Okay, so my house currently looks like an episode of Hoarders: Children's Toys Edition, but I thought to myself, screw it, I'm working on the blog.  I am excellent at excuses, by the way.
So, to back up a little, I want to detail Caleb's story.  For us, there was no single "Aha" moment when we realized something was wrong.  He was slow developing physically, but I have a family history of those issues, and our older child was also slow to walk and climb, and was a little bit behind verbally, so we didn't think anything of it.  Cade had caught up, and so would Caleb, we rationalized.  The lack of verbal skills soon became puzzling, but everyone has a story for you when your child is developing differently - "Well, my cousin's kid didn't talk at all until he was three, and he's a physics professor now."  So, naturally, my mind raced ahead to Harvard classes and degrees, and eventually to Nobel Peace Prizes.  Denial is also something I excel at.
Doctor's appointments were made, and we were still a little at sea.  Our pediatrician is an excellent doctor (who I keep trying to talk into going into family medicine so I can become a patient myself, but he's still holding out on  me.  Turns out he's a very stubborn man.)  Caleb didn't really meet much of the typical criteria for an autism diagnosis - he was not talking, but was also not exhibiting any other "red flag" behaviors, like rocking or banging his head, or spinning in circles.  He had no attachment to routines, no social anxieties that we'd observed, nothing other than the lack of speech, and lack of pointing, which turns out to be a pretty significant symptom, incidentally.  We had his hearing tested - nothing (except a big fat medical bill).  So, our pediatrician referred us to a state program that provided speech therapy assistance.  A few weeks in, the therapist dropped the "A" bomb.  Autism.  I can still remember the frozen fear that filled me at that word.  My mind went completely blank - I had no idea where to go from there.  Something like that had never even occurred to me, which is shocking, since my mind is usually busier than a hamster's wheel, stressing about just about everything I can come up with.  So, we went to the neurologist our pediatrician recommended, and I have never been as scared in my life as I was at that appointment.  Logically, I knew that my child was what he was, regardless of what a doctor wrote down on a piece of paper, but I couldn't help but pray that that "A" word wouldn't come out of her mouth - if she didn't say it, maybe it wouldn't be true.  Maybe the speech therapist was wrong - what did she know, anyway?  She only spent an hour a week with him, and we were his parents.  I was his mother, I would have noticed, right?  My mind raced as my husband, a former psychologist, and the doctor conferred while Caleb busily banged through cabinets.  We went down the checklist, and again, Caleb was a little puzzling.  The speech was a problem, but that was the only "red" flag.  He had other yellow flags, but not enough to make a diagnosis.  So, she settled on another diagnosis - PDD-NOS, pervasive developmental disorder, not otherwise specified.  Only time would tell, she told us - we could come back in six months and, after re-evaluation, he could be classified as autistic at that point - he was still very young.
Wait and see is not a good game plan for me.  I like to plan.  I like to research.  I like to KNOW WHAT THE CRAP I'M DOING, and when I don't, I get anxious.  So, naturally, anxiety ensued.  My friends, family and coworkers were all very supportive and sympathetic -  although looking back, I'm convinced at least a few of them were secretly considering crushing up a few happy pills and adding them to my morning coffee when I wasn't looking. 
For the first time in my life, I felt completely out of control.  I did as much as I could - researched therapies, schools, at-home methods, and got him signed up for a great Applied Behavioral Analysis program.  Even then, I felt helpless.  This wasn't anything I could FIX, and that made me so angry.  Around that time, Caleb started learning his letters.  We didn't think anything of this - if anything, he was "late" learning them, since Cade had learned his at 18 months.  But Caleb seemed to take comfort in them - he would carry wooden ones around with him, and focused on the letters on various toys we had.  Still, nothing to any extreme degree - we could always distract him if we tried, and he did play with other, non-letter toys.  The letters led to numbers, and we were proud of him, although still a little confused.  His speech picked up with therapy, and he had no problems expressing himself - I have a crystal clear mental picture of him at just barely 2, toting this huge box of goldfish to me that he'd pilfered from the kitchen cabinet, proudly announcing, "Shish!  Shish!"  It still makes my heart smile to think of it.
So, here we are.  Some new things have popped up since we got started on this ride, as the doctor suggested they might.  He doesn't like large groups of people, although he will usually warm up about 10-15 minutes in and be fine, but he still likes to keep me in sight.  He's very affectionate, especially with me, but tends to be clingy.  I'm still hoping this is a 2-year old thing, since I remember Cade doing the same thing, and I had extreme separation anxiety as a kid.
Unfortunately, this is the nature of autism.  No two children are exactly alike, no set of symptoms the same.  Just as I'm relieved that he doesn't exhibit one symptom I hear about, he does something else that makes my heart race in my chest, and I panic, thinking, "Is it autism?  Or is it a phase?"  Kids this age are quirky by nature, so I can never be sure.  One day he'll play with his letters for long periods of time, sending me into a tailspin of worry, the next he's crafting elaborate plans to sneak his favorite snack out of the kitchen cabinet, and shouting "RO!" into a toy telephone like he's talking to his (apparently very hard of hearing) granny.   All we can do is focus on the positive -  his therapists and doctors are very encouraging, and the research I've done on my own has been enough to make me realize that it could be so much worse, and he's got a lot going for him.  Emotions are conflicting - a terrible love tinged with worry, sadness and a fierce protectiveness.  And guilt.

Hey, I am a mother, after all.

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