so…about the boy. {in the beginning}

june, 2012

well. here we are.

new space. new adventure. new and utterly terrifying acts of bravery.

in my head, this all transitions seamlessly – i slide gracefully and articulately into writing about this child that i have protected with Grizzly-bear ferocity for the past 8 years.  i imagine unburdening myself of all the fear and doubt; sharing  the extreme, soaring,  joys as well as  the utter despair and sorrows, with charm and wit and a hefty dose of the humour that keeps me sane.

that’s what i hope for — no promises, though. this could all be a catastrophe of epic proportions.

{ cue aforementioned wit and humour }

so yeah.

this is it.

onward, then.

for those of you that stumble across this space…whether by me dragging you here from elsewhere, or just wandering through on your own chaotic and magical  journey…welcome; welcome to our story….

++++

I can go as far back as his first birthday party to find evidence that perhaps things were…. different… with Sebastian.

Our family isn’t known for it’s skill in singing, but never has a chorus of “Happy Birthday” been met with hysterical screaming and red-faced histrionics. So, no scrapbook-worthy photos of a cake-smeared baby were to be had. B and I attempted to stage a subsequent event the next day, but apparently the moment had been missed.

He became less and less tolerant of crowds and strangers after that. B attempted to take him to a playgroup when he was about 18 months hold but instead of joining in for patty-cake and sing-a-longs, Sebastian had his hand on the door-knob, screaming to be let out.

From there, we had to give up taking him to grocery stores or shopping malls {no big sacrifice, there} because he would lie down in the middle of the aisle, sobbing, until I scooped him up and carried him out, groceries abandoned, ignoring the tsk, tsk and glares of the people who apparently knew better how to parent my child.

But how could they know, when even I was at a despairing loss with how to carry on?

Instinctively, I knew.

Looking back, I can see that I’ve always known.

But I didn’t always know what.

My only knowledge of autism was head-banging, unreachable children and their heartbroken parents. That, and Rain Man.

Because he was a loving and affectionate child, he couldn’t possibly be autistic, I reasoned with myself.  And I would defend, ferociously, his right to be allowed to be himself. I had never heard of the autism spectrum and it’s many and varied manifestations — that an autistic child can be loving and affectionate with the people he knows and still illicit the traditional,  non-eye-contact approach with strangers.

I was {and am} convinced that, given the time and space and support, that he needed, things would turn out just fine.

I had a pathological degree of terror surrounding what They would do to him/insist upon, if I admitted that there was even the tiniest possibility of him being autistic.

But the time of denial is over. I have had to face down my own demons, my own desperate fears for this child {and myself}, in order to come to a place where we are now pursuing a formal diagnosis.

At some point, years ago, B and I decided not to have him assessed for Whatever Wasn’t “Normal” about him. I was convinced, and B agreed,  that a label would put him in a box and assign him limitations – limitations that I simply don’t believe in. And, to be honest, I have a deep mistrust of the System.  When I took him to a free screening to assess his speech-delay, the self-important and utterly disengaged speech therapist showed no interest in how her suggestions of my interfering in his lining up of his Thomas the Tank Engine trains with Vroom Vroom noises would send him into orbit. What kind of mother was I to not be able to impose in such a  simple way? Clearly, I was ineffective and uncommitted. But things have changed as he gets older and we are now at the point where I believe a diagnosis can be his wings, rather than his shackles.

Of course it’s all just hoops to be jumped through — whatever string of letters they want to attach to him, he is still as he has always been: charming, affectionate, brilliant and exasperating. He loves cherry tomatoes, cucumber with white sprinkles {salt}, playing outdoors in his pajamas and I Spy books. He hates singing {still}, taking a bath, loud noises, crowds and studio photographers.

This is simply the beginning of everything.

+++++

So yeah, I don’t know what I truly hope to achieve here….a chronicle of our journey, a reminder to myself of  how far we’ve come and how infinite the potential of this child and others like him.

Maybe part of it, too, is that I still see so much harmful language and assumption attached to these kids — how so much emphasis is made on assimilation rather than integration,  how so few properly trained teachers/support personnel seem to exist and how incredibly difficult it is to find and access resources for those of us who may prefer to continue to have our children learn at home.

Perhaps, too, that although autism has more of a voice in the world since those days of the Merck Medical Manual, I believe it needs different voices; voices that advocate for gentleness and grace, for a belief in the infinite potential of these children that meets them where they are, not where they ought to be.

I believe it’s time to add my voice to that chorus, because it’s never too late, or too soon. There is only now.

 

ps. i’m still rearranging the furniture here…this is my first venture into WordPress…so bear with the mess. 😉

Advertisements

21 thoughts on “so…about the boy. {in the beginning}

  1. Honoring you for ALL of the bravery you show here. I agree so much with your approach. DD22 isn’t autistic, but let’s just say she’s not a rocket scientist. However, she is loving, giving and deeply caring, a wonderful mom to her son.

  2. beautiful, true, raw.
    you “get it.”
    and so will those who surround you. family and true friends.
    congrats on being a great mama. and thanks for sharing.
    xoxo

  3. Love how you’ve put it that autism “is just another way of being in the world.”
    I admire what you’re doing here – both with you son and with this blog. All the best.

  4. There is so much I would say – but I hope it would all come at the point to *love*. Love for you, wonderful mama, and how you have protected and upheld your son. Love for him, the magical child. Love for autism, because I know and understand how it is a diagnosis, and how it causes so many problems, I really do – but at the same time I believe that it is the growing of the human experience (evolution if you want to use that word). Maybe its happening now because we are strong enough, wise and compassionate enough, to help our children as they need to be helped to find their wings and make our world fly.

    I agree with you that labels can be helpful. (And I agree with you that there’s a time, especially when the children are young, when they’re not helpful.) What’s unhelpful is not the label but all the stuff that goes along with it – the judgment, the intervention, the boxing-up and putting-down. Sebastian is very blessed to have such loving, dedicated parents who support his soul’s journey.

    And love for the name of this space. Beautiful Havoc is just absolutely wonderful.

    • oh sarah….you make my heart soar. thank you…so very much…for your kindness and your thoughts — i’m holding your beautiful, heartfelt, words very, very close to my heart. xoxo

  5. Oh isn’t that funny my last attempt yesterday did go through– despite the message that came up saying my post was disallowed . No problem. Your post was worth thanking you twice.

  6. I am so grateful that you are writing about your son here. This is the third time I have tried to comment–I keep getting rejected– and I would have given up by now if I wasn’t so moved and inspired by your decision to chronicle this beautiful and difficult journey with your son. So one more try to tell you thanks for this post.

  7. I am in awe of the depth of your beauty and strength … Sebastian has the perfect mama and of course, he is The Perfect son for you and this wild. wonderful journey. I know your voice is needed … the conversation needs to be expanded and you bring in light and hope by sharing here. We all want to honor the gifts and spirit of our children and even though our battles are different, the sentiment is still the same.

    There is a woman, Molly Kenny who has done some amazing work … I can’t find any good links, but see if this opens and scroll through the article to the section on Integrative Yoga Therapy … she seems like a wonderful resource and I’ve met her – her stories of the kids she works with are so beautiful, so powerful. Her center is in Seattle. I’ll try to find a better article … but I love this part:

    “However there is another integral aspect to this approach that, in the end, is truly
    the heart of this therapy and why it works. Yoga based therapy by definition, should have
    a spiritual and philosophical bent that separates it from conventional clinical
    interventions; that is, a focus on the divine being that exists within each individual, no
    matter how distracting the external manifestations of the diagnosis might be. Integrated
    Movement Therapy works on the principle that encouraging and developing the self-
    esteem of the individual is the single most important factor in increasing skills in all
    areas. To this end, in our therapy we focus on what is right, the goodness or divinity of
    the individual, and write our goals and develop specific therapy programs to increase
    these positive aspects.”

    https://docs.google.com/viewer?a=v&q=cache:7UmE3YhiZCoJ:www.iayt.org/site_Vx2/publications/Bibliographies_Members/autism.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEESjT8dpnVBHmxaDpv7qqtzLdSTlb9rdprAn3wtZXoLW7d0phoa22trjUyoxM7_FdtKtXYF80fSR-wJVXPLz7lHw9hyycy8fvjMYOWL02FlJTNpHcU9Un-rvZtfrM3KMxDE4ABHTH&sig=AHIEtbSacb-s9JaZ9eLUEOECJ8nUy74LJw

    I love seeing you soar! xoxo

    • GASP!!

      leave it to you, Miz Lisa, to get me all teary-eyed. i love that quote and will investigate further….that resonates SO very deeply with me {as i’m sure you knew it would, cos you’re just awesome like that}..the idea of honouring the absolute perfectness of each individual…*sigh*

      thank you…for so much more than this…you are a beacon.

      xoxo

  8. hello dear soul, your courage and love shines through here so brightly! what a very lucky boy that sebastian is. so incredibly much! that you have walked this journey so far, quietly, on your own says amazing things about trusting your own intuition and listening to your heart. brava! and that you see all the many facets of the path he walks. WHERE he is, and that it can be his wings. i am filled with love for you. does it feel good to share, as scary as that is, a little breathing room? because here we all are, a room full of love and support at the ready!! sending you oodles of love, and a giant spoon and a jar of nutella for a little self-care. xoxo

    • thank you, dearest you. yrs, it does feel good to share….it’s like a huge weight has been lifted…a weight i didn’t even realize i was carrying. ta very much for the nutella…tis a most timely gift 😉 xoxo

  9. your strength and courage are beautiful, Mel. I think, with anything, we should only follow a very small portion of what the “professionals” tell us. we need to be our own advocate, especially for our children, and take matters into our own hands and follow a path that we know in our hearts to be best. sending you much love and hope that you find the peaceful resources and guidance you need to take this journey in a way that is right for your son and yourself.

    • thanks so much, Amanda. i couldn’t agree more…the powers that elect themselves (;)) have only generalities to work with – the individual is largely lost within The System – so to be one’s own (or one’s child) advocate is a truly important role.

      thanks again for your words…they are deeply appreciated xoxo

  10. you’ve expressed everything so wonderfully – authentic, gentle, protective but brave.

    i totally understand, intellectually, not wanting any formal diagnosis and to suddenly find yourselves in that System. i’m very distrustful of labels and especially all these new ones forced upon children (don’t get me started on adhd or whatever the letters are).

    But I think you may be right, that a diagnosis now, that he’s older and you’re ‘older’ as a mama with him, could be his wings. i know you’re enough of a mama bear and intelligent and determined enough to take what helps and dismiss the rest.

    anyway, i also think that putting your journey out there will be helpful/inspiring/supportive to other families.

    • thank you so much… for seeing me and understanding where i am. i read something recently about a person who was questioning the wisdom of labels as they relate to ASD and a reply was made saying that at some point the label can become a tool rather than a sentence. i like to think that that’s where we are now.

      xo

  11. This is beautiful Mel ~ not only the blog design but the thoughtful and articulate content, not to mention the courage it clearly took you to write these words. I don’t have any wise words myself, but I support you 100%. xx

    {ps. I didn’t want to use FB to leave my comment but it was being weird about WP log in!}

thoughts are always welcome...please respect this space and those who visit here

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s