Monday, September 23, 2013

Perception

Finian has performed a typically autistic staccato developmental leap...he has been coasting along in his
comfortably smooth, dream-like way when BOOM!  he suddenly started sleeping by himself  (because he's a "big boy") and blind-siding us with spontaneous sentences that don't have to be extracted from him with a set of pliers and a foot planted on his chest.

Autism will never fail to surprise me, thankfully sometimes in a good way.

James and I have had to take it in turns to sleep beside him since he was a baby.
We were lucky if he slept by midnight, and inevitably we'd drop off beside him too.
We became experts at communicating efficiently over the heads of rowdy children and sandwiching quick chats  in between over-stretched schedules.
Amazingly, we still managed to remember each other's names and have been blessed enough to avoid the marital problems that so many of our friends have experienced.

Then we went on holiday to Donegal in August.
It was our first family holiday since Finian was a baby and we were prepared for it to go either way. Luckily it was a huge success.
Finian's bedroom was beside the living room and he was happy to hit the hay knowing we were only a few feet away.
The fact that he was banjaxed (one of his favourite words) from busy days surfing through the Atlantic Ocean and ploughing up sand dunes also worked in our favour.
And with that, in the space of one week, our bedtime barnacle was sleeping on his own.

Suddenly nine years of  evenings spent apart from my husband were over.
Now we toast our feet at the fire and say "don't I know you from somewhere?" to each other while our three kids sleep upstairs.
Sometimes we waken in the morning without feeling like we've been battered by a cranky warthog all night.
Sometimes, now get this,  we don't feel tired.





It's kinda weird.

Finian has also been surprising us with the odd spontaneous sentence.
Normally, speech is only drawn out of him when he really, really, really wants something.
In the past few months he has instructed his Daddy to "stop messing" (quite right too) among other sound bytes all associated with playfulness and giddiness.
He thinks it's hilarious to switch off the bathroom light (which is cleverly located outside the bathroom...for the love of God WHY???) while you're using it.  It is hilarious as long as it's not you who's spray painting the floor and tripping over your own knickers.
His sense of humour is evolving all the time, and they say Autistic people don't get jokes.

Finian changed schools in September and now attends Abacas in Drogheda.
It nearly broke our hearts to leave his previous placement at Loughmourne NS, but Abacas educate with a very strong emphasis on behavioural issues, and he can stay there until he's 18.  The worry about where he would be educated after primary level was keeping us up at night so it's a huge relief that he both got the place and that he has settled in brilliantly at it.

So all this great, positive stuff has been going on.

Then I took Finian to a rare Speech Therapy review, where we spent half an hour with a gorgeous girl who did all the tests in a kind and patient manner.
But as we walked to the car I felt like my good bubble had been pricked with a giant pin of What-The-Fuck-Planet-Are-You-Living-On (this pin exists, OK?).
I couldn't understand why I was suddenly overwhelmed with sadness and loss of hope, and why I was glad I didn't have to speak to anyone for the next few hours as opening my mouth would have released a flood of snot and tears (I've told you before, I'm not a pretty crier).




It took me a quiet half an hour in Mc Donalds with my boy to see that the Speech Therapist viewed my son, however kindly, as a set of deficits that needed to be fixed.
I'm not criticising her.  She did her job well and I'm very glad Finian has the chance to see her.
It's just that, for those few hours, I briefly saw my son through other people's eyes.

I see him as Finian.
Funny, stubborn, loving, wild.
Occasional streaker with a fondness for wearing his sister's clothes.
Chewer of coal and bouncer of beds.
Champion navigator the world wide web.
Lover of words but avioder of using them.


School (both current and previous) and our holiday have given us a sense of acceptance and our own brand of normality.
They work to his strengths and seem to use them to lessen his weaknesses.
We never get the sense that he is somehow broken.

I left that appointment with the reminder that most of the world do not see him with such clarity.

Their loss.

With Autism, the surprises come thick and fast.
Some are great, but some of them really leave a bruise.











11 comments:

  1. Full of honest reflection as usual Jean. Lots to identify with. More please

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    1. Thanks Lorraine. I'm glad you got something from it XXX

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  2. So get this! I hate those moments when you have to see your precious kid through the lens of a doctor/therapist/person who doesn't 'get him'. Glad to hear he's doing so well!

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    1. Thanks Eithne. It's a rare moment, but thankfully I don't worry about it too often XXX

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  3. Oh bugger them! Starting to see the world as 2 camps; those who want to feed the lawn and enjoy the dandelions and daisies, and those who only see weeds. After 2 weedy years with an inexperienced landscaper, Gracie now has a nurturing teacher who writes in her diary everyday how wonderful she is. It makes a huge difference to
    me and my stomach acid levels but may result in me needing bigger jeans as I am so happy all the time.
    I'm so happy and relieved for you Jeanie!! You and your lovely fella have earned this sweet spot.
    Xx

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    1. I still don't believe we'll ever get to call you Lard-Ass! That's so good for Grace. Positive thinking is infectious. We're enjoying every minute of it.
      And I LOVE daisies! XXX

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  4. Yaay for not feeling tired and getting the bed back - I think maybe I should book a holiday too :)

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    1. We're still pinching ourselves! Get yourselves to a quiet house in Donegal...there must be something in the air up there! XXX

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  5. We had those same sleeping issues until around the age of 8 (as in.. there were three in the bed and the little one said!!!). Really great to hear that it has all been sorted. Sorry about the Speechie. :(

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  6. Great to hear he's sleeping on his own!!! Awesome news.

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  7. hah! new reader here, in new york city - I just SO get your bubble burst thing: I now spontaneously leak tears at ANY parent-teacher sit down (my autistic 8 year old's AND my typically developing 4 year old's) - my body just knows, before my brain does, that this situation has SUCKED in the past and someone is about to hurt feelings about my kid I didn't know I had. ARG.

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