typical

*

Last night, I wrote this ..

Screen shot 2012-12-27 at 5.59.03 AM

983 of you liked it and a whole lot of you left comments on it. One of my favorites was this one …

Those incredible moments of true clarity. When you’re not sure who’s teaching whom. 

I’m lucky enough to be a 40-something single dad with a four-year old son on the spectrum. 

I hope I teach him half as much as he’s taught me.

And then there was one that made me think.

One that woke me at 3 a.m. with this post in my head.

One that started an avalanche of thoughts about how I view autism. About how we all do.

It was this …

One of the things I love too… those moments of complete ‘typical-ness’ that you never want to end.. and in holding on to that you realize NOTHING else in life is really so important…  Raising a special needs kid has made me a better person in so many ways …

It was a beautiful sentiment. And one I might have written myself not long ago. But last night, it started the avalanche.

I began by responding with this …

A, I don’t think there’s anything typical about it really 😉

And then the questions began to thunder down the hill  …

Why is it that we are so quick to demonize autism — to make it the catch-all for anything difficult in our children’s lives, in our families’ lives; how is it that we are perfectly willing to assign to it anything and everything challenging and yet, when we find something beautiful, it is either in spite of autism or gloriously representative of its ‘absence’?

As I lay awake, I thought of Godpsell — my baby’s beloved Godspell — of the first time that we took her to see it on stage two years ago, in the form of a dress rehearsal at a local playhouse. I thought of the joy and the wonder on her face seeing her favorite thing in all the world come to life. And I thought of Luau’s reaction to that night, and mine.

This was what I had written following the show …

It wasn’t until yesterday morning that I saw the status that Luau had put up on his Facebook page on Sunday night. He had written, “For three hours tonight, life felt .. typical.”

I had a very different experience. While I don’t take anything at all away from his sentiment, I have to say it was nothing like mine. For me, the night was anything BUT typical. He later told me that he felt like autism wasn’t there. That for three ecstatic hours, it had receded into the background and blessedly, finally, just didn’t matter.

For me, autism was front and center that night. Autism was part of what made the whole thing what it was. There is nothing in our world that compares to Brooke’s pervasive and abiding love of Godspell. Sure, Katie loves Taylor Swift and a show would be a hoot. But does she listen to her EVERY day, google her, watch clips of her EVERY chance she gets? Does she draw pictures of her in Halloween costumes, at the dinner table, riding on a rocket ship? Does she talk about her, reference her, create games and scripts and whole worlds around her? Is she literally imbedded in every aspect of her life? No.

I can think of nothing that comes close.

If Brooke were not who she is – autism and all – that experience would never have been what it was. For her nor for us. While I’m not ready to say that I’m grateful for autism in and of itself – not by a long shot – I am deeply thankful that within it there are moments like this. Moments of grace, moments of joy, moments when judgement is replaced by generosity and kindness and the world comes together to make something wonderful happen for a little girl who deserves nothing less.

*

Last night, when my girl kissed my arm then climbed into my lap, she forced the world, for one blessed moment, to stop spinning. The quiet, gentle intensity with which she approached me is not something that translates into words, no matter how talented the writer. I certainly am not up to the task.

The love that radiates from her — and the way that she expresses it — in overwhelming, all-encompassing bursts, is not remotely typical. It’s far, far more.

And I fear that if we spend all of our time chasing the Myth of Normal, we might just miss the reality of what’s in front of us.

Autism is hard. Sometimes it downright sucks. It challenges our kids and it challenges us. It can hurt like hell when we can’t take away their fear or their pain or figure out how to keep them safe or Make It Better.

But that’s not ALL that it is. It’s not one-dimensional. It’s not just the negatives. It can’t be. And if we allow ourselves to believe that it is, then how can we possibly expect that our children will not hate that part of themselves, no matter what we might tell them? How can we not hate that part of them too?

But what if we allow ourselves to see the rest of the picture? To see that the moments that we so fervently appreciate, the ones that we call time-outs from autism — aren’t? That they really are just as attributable to it as all the rest?

That when our kid plants a kiss on us and runs away, leaving the kissed spot feeling warm and loved – that’s autism too. That when our child is distracted by a small detail in a far too busy world and he draws our attention to it, allowing us to see something beautiful that we never would have seen otherwise, that’s autism too. That when our kid squeals with delight spinning or flapping or running in the wind, that his unbridled joy is autism too. That when she enjoys something with an intensity that we can’t begin to understand, that’s autism too. That when she laughs at a joke that no one else hears, that’s autism too. That when he remembers every detail of every train schedule in the Northeast Corridor, that steel-trap of a brain is autism too.

That when we become better people for parenting these incredible kids, that’s autism too.

I don’t want to whitewash it. It’s not all unicorns and rainbows. Not by a long shot. But neither is it all negative.

Because my girl has the power to stop the world from spinning. And that’s anything but typical.

 

 

16 thoughts on “typical

  1. As a mama to two children with special needs – one on the spectrum who also has Tourette’s syndrome and one with Down Syndrome – I couldn’t agree more with your sentiment that being a parent to sn children has made me a better mother, and a better person. Before I had children I thought of all of the things I would teach them; what I can give seems far less than what they have given me.

  2. We are going through a patch where autism is really, really hard. Where keeping her safe feels almost bigger than me, and this Christmas ‘break’ is anything but. But I took her outside to play yesterday, and I got to watch her perfect joy as the snowflakes landed on her face, and I got to watch her face scrunch up with delight as she peeled her gloves off to dig her fingers into the snow. And you’re absolutely right, Jess — it was anything but typical.

    Thanks for the reminder.

    • Yes, it is that one boy – right now, exactly as he is, in all his glorious wonder. And yes, that is autism too. Thank you for sharing. I’d read if before but was happy to read it again. 😉

    • That’s part of it – but that’s not the point.

      It’s a really important stop on the way to the point, and it’s why I wrote this — https://adiaryofamom.wordpress.com/2012/07/07/person-first.

      — but it’s not the point of this post – at least not for me. You of course, are welcome to read it as you choose 😉

      But for me the point is that the autism (which is decidedly not separate from the person) is as fully dimensional as the person.

      That it’s not – and can’t be — all negative any more than it can be all positive. That it creates challenges but that it also creates beauty. That it’s hard, but that it’s rewarding. That there is far more balance in it than we acknowledge.

      But yes, the first point too.

      😉

  3. I have my daughter on he spectrum and can say with certainty that my 21 yo son is too, but when he was little, they called it “ADD and anxiety and OCD”. Anyways, I think of all I have earned from heir “obsessions”, things I never would have taken the time to learn. I am well versed on tornados and thunderstorms, all construction vehicles and the Armed Service. My oldest is now in the Reserves and going to school to be a nurse. (Um, no empathy? I don’t think so). We have had our share of problems, but truthfully, the 2 children I have on the spectrum are easier to live with than the one who is not.

  4. Thank you for lighting the way to a destination, a state of mind, that many of may have a hard time imagining at our point in the journey. We all peel this onion back one layer at a time. 🙂

    You posted (yesterday, I think) about being sorry for not understanding what it was like to not shower during a day. Not so long ago I was thankful to shower once a week. I spent nearly two years not going to the bathroom alone. Paper cuts versus double amputee…. Not sure where we land on that particular spectrum, but with 2 pre-schoolers on the spectrum, probably nearer single amputee and charging our way towards lacerations (through therapy and growth in all of us, big and small). I’m not sure where your family lies on that spectrum, but it may be a different experience for Luau who is immersed in the requirements and limitations of super-parenting more hours of his day.

    I think you’re about 5 years further into this experience, down that road of awareness and discovery, than us, and I thank you for showing us what might be to come.

  5. I think what you describe is so very beautiful, but I must tell you that as a little one you also provided those very same moments with the same depth of feeling, with your touch or need to be held or just by slipping you tiny hand in mine as we walked along. It has no relationship to any condition other than the great intensity of love a parent and a child can share… I miss my “little one” but although her grown up love is different it is just as rewarding…
    Love you,
    Dad

  6. Hi Jess, after a rough day with Liam on Christmas, we were both feeling worn-out, run-over, and just generally down around here. At the end of the night, I walked past his most recent school picture on the wall, where his little face just beams in this otherworldly way, and that made me catch my breath. I sometimes feel like I have two children in him: the quiet gentle soul that I see much of the time throughout the day and then the wild, ravaging child who tears through our home for the rest of the day. And so what I decided on that night was to suspend my disbelief that everything about life with Liam sucked. That autism was making me old, and that he was not connecting with us in any way. I decided it was time to believe in him, in us as a family, and in the hope that life has. I am trying to see his autism in a wholly new way, and to see it as just him, as he is, good-bad-ugly-sweet, just as we all are. And that helped yesterday and today be much, much better. And then I read this beautiful post, and I thank you for your wise words. : )

  7. Struggling to clarify my thoughts after reading this- you have really struck a chord in my thinking when you say there is nothing typical about it…. but I think I approach it from a different angle in that I say in our house everything is normal for us, without labelling anything good or bad…..and in others houses everything is normal for them. Does that make sense? Anyway, just wanted to thank you for the honest sharing of your thoughts- you have got me thinking again too!
    Michelle

  8. from diary’s FB page:

    Molly – Amen. I pay attention to developmental things from time to time, and obviously to sensory needs, but mostly I just try to love life as it is.

    Robin – The truth of the matter is “normal” doesn’t exist.

    Jennifer – I love this post and I completely agree with you. Autism IS hard, but it has opened my eyes to things I never noticed and made me appreciate little things that I may have once taken for granted. I hope it had made me a better person, it has definitely made me a stronger one. You were the first blog I started following because I feel you show the beautiful parts of Autism, and give others encouragement to work through the hard parts. Thank you

    Chris – If you haven’t, you should consider spending some time reading about Buddhism. Almost all of the teachings of the Dharma break down to this one truth and then go on to teach us how to apply it to our own lives to find peace.

    Chloe – One of the 1st lessons I had as a student nurse was, ‘There’s no such thing as normal, all of the people you will meet are unique, do not judge’ I have stood by that all my life

    Natasha – Every “that’s autism too” charged me with more and more strength to love and embrace my boy’s autism. Thank you for perfectly laying it out!

    Lisa – awesome, the simple messages are so powerful

    Nicole – Thank you for all your posts, but especially this one. You always seem to put what I feel and think into real words.

    Dawn – Beautiful. Needed this so much today… thank you xo

    Kristin – I think that’s my favorite entry.

    Kristen – Love, love. Thank you. I’ve become much better at embracing all of it. ALL of it. There are blessings to be found, for sure. While initially we were forced off of the “typical” path, today I’m grateful that I can now stop and breathe…look at things differently, more compassionately. While I still yearn for all things typical, I’m trying not to miss the beauty in looking at this life through a different lens.

    Gina – Amen!

    Beth – Love this…

    Cheryl – Normal is overrated! Well said!

    Dawn -…and, exactly

    Lakredi – I love that. Thank you!!!

    Martinez – Everyone needs to believe in that!

    Camille – I agree it’s not all.bad but I love typical moments where.the stares are noy rampart, my son is enjoying himself without overload, my husband not uptight just simply being and my son smiling, while joy has nothing to do with autism or typical I love the moments in life where autism is not all.consuming…..but I can always call.on the name of JESUS

    Gina – Wow, does that ever sum up life with special needs!

    Florence – Beautifully written!

    Eileen – Thank you! This is beautiful.

    Jennie – I agree, no such thing as normal. Thst flew out the window when I suspected my daughter had autism. It’s okay, because we’re not normal. we’re a fun and weird family anyway.

    Sabrina – That Is in fact what worries me the most…

  9. Pingback: Time Well Spent | Pucks and Puzzle Pieces

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