Sunday, October 10, 2010

Six years and counting

I had forgotten about the significance that October 6th holds for me, until a friend reminded me. It is my friend’s birthday, and also, apparently, a really crappy date for our family.  This year on October 6th we buried my 93 year-old Mother-in-Law. Six years ago, on October 6th, 2004 we received Jacob’s first autism diagnosis, and for me, for just a moment the planet stopped spinning and all the stars dropped from the sky.  I had sensed it was coming, but until you hear those words you tend to hold onto the hope – that he’s just language delayed and has a lot of sensory issues, nothing a few years of early intervention won’t fix. But when you take 2 from column A and 3 from column B and add them up together, you really do end up with the PDD-NOS special. No getting around that.  So on October 6th, when Jacob was two years and change, our world changed forever.

I don’t like to think back to that time, it was not good.  Jacob had already had six months of early intervention to little effect. Speech Therapy, OT, PT and one measly hour a week of “play therapy” with bupkis. And then at our six month team meeting I asked the question: “Why does he still not seem to understand anything we say to him?  Why is he still putting all his toys in his mouth instead of playing with them? Why is he making such slow progress?” And they gave me this answer: “Well, we only evaluate, we don’t diagnose. For that you need to go to a Developmental Pediatrician or Neurologist. And we think it’s a good idea that you do.” REALLY??? It took you six months and ME asking you what’s up to come up with this piece of advice? And then afterwards everyone fesses up they’d known or “strongly suspected”  that he was on the spectrum.

To tell you I was mightily pissed off about all this, to tell you I was ready to shred the world at this delay at such a vital time in his development is an understatement. I am surprised I did not catch on fire in spontaneous combustion, I was so enraged. This is one of the many reasons I don’t like thinking back to that time: I still burn a bit whenever I do. I will never completely get over wondering where Jake would be now if, right from the start, he’d had the 25 hours a week of effective, cutting edge, natural environment ABA, that it took us almost 2 years and much fighting to get set in place. But to go down that path is to get caught in the whirlpool of what-ifs that would drag me under, and Jacob needs me here and now, swimming alongside him.

Six years ago was not like today, when there are hundreds of Autism mom bloggers and dozens of organizations with the word Autism in them, dispensing information and advice; whether wise or dubious, they are at least visible. Today everyone is talking about Autism, it’s all over TV. Six years ago was just before the big groundswell, just before the Dawn of Autism Awareness, so I had to dig, dig, dig to find information and work hard to assemble some semblance of community.  I encountered lots of disbelief when I told people Jake was autistic because he was cuddly and smiley and joyful (as well as spacey and non-communicative) and most people only knew of classic autism, the totally shut inside themselves, rocking and self injuring kids who didn’t want to be touched.  We have all learned so much since that time.

I have also learned to reframe my definition of hope. Six years ago, so many people spewed sunny predictions, they said “he’s so bright, he’s so motivated to learn, surely he’ll be mainstreamed by kindergarten, surely this is just a little blip in his development.”  Bur some, wiser, more honest, more sober individuals pointed out that the fact that his receptive language was way more delayed than his expressive was an ominous sign. It pointed to significant language processing issues, organic brain processing differences which do not go away. Ever. As much as they can lessen and be compensated for.

And thus far the cautioners have proven to be correct. As much as Jacob has made tremendous strides, as he so fully engages in the world, seeking out friends, attempting to share his attention with everyone around him, he still has significant processing deficits which keep him far from swimming in those mainstream waters. He still needs a very special Special Education classroom, with a small class size, lots of adults present AND kids who are fairly well related to engage with him.

But looking back does help me to see how far he’s come. To celebrate again this amazing, talking all the time, interactive boy who will now grab my face and turn it to him because he WANTS me to look him in the eyes as he tells me something.

He may still have significant issues, but he is not the boy he was 6 years ago, when they first tested Jacob; when the Developmental Pediatrician asked if I noticed that he climbed on me like I was furniture; that he didn’t seen to care when we called his name; that his eye contact was variable and fleeting; that in spite of the obvious joy that suffused him, it’s not the same thing as relatedness.

Six years ago I was told that my happy, loving boy was not just speech delayed and sensory seeking, not just “dreamy” as his rather useless first speech therapist had reassured me, but was actually “Autistic.” And my world cracked open. And I began to reshape that world, into what Jacob needed it to be, to let him come to the here and now. 

We have been in this together for six years now, and I am sure I will be in it for the rest of my life, figuring out what my son needs to make his world work for him, how he needs to grow and change and how his environment needs to be shaped so he has the best possible chance to do that growing, and be successful in the world. 

Six years from now where will I be looking back from? What will life with fourteen year-old Jacob look like?  I surely can’t know.  And while a part of me can’t wait to find out, wishes I had a crystal ball that would offer shadowy glimpses of our future, I know that the only way to get to that bright future is to keep putting one foot in front of the other, day by day.

Day by day, together.

 

Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She is proud to be a Hopeful Parent.



4 comments:

  1. Varda, as ever this is beautiful. I remember the psychiatric who assessed Max telling us he was just 'bad with rules' and independent, only to tell us 18 months later that he was autistic, and 'didn't I tell you?'. I could have killed her. Sorry that October is such a crappy month for you. It's a favorite one for me: my birthday on the 18th (40 next week!) and our wedding anniversary on the 30. I'll try and send you some of my october positive vibes. Hugs.

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  2. You spoke many of my own thoughts
    I loved your post
    I am 3 and a half years into my journey
    I wonder where I will be 3 years hence
    But I know if I could look back to a younger K - I would tell her that life though unexpected and hard - was still very very beautiful

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  3. I loved this post. Jacob is a lucky boy.

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  4. We have a similar story, except that our daughter was over 4 years old before anyone bothered to recommend a developmental pediatrician, something that I'd never even heard of before, and then we had to wait several months for an appointment...and then after we got a diagnosis the school still didn't agree, and we had to fight pretty hard for the services we needed. This was all just over two years ago. At the moment we're on a good track. My daughter seems to be coping well with her gen ed 1st grade class, in part due to her excellent teacher.
    It is amazing how our bodies/psyches hold on to those hard anniversaries. For several years running Thanksgiving was very hard for me. I think it is very important to keep that day by day outlook at the ready for such times as these.

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