My wife did the lion’s share of these trips that were always met with a roar of disapproval from Isaac. Each one a nightmare with everything stacked up clumsily against him. His specific traits that we knew little of then were being completely compromised and this contaminated his mood and sensibility severely. His strict, systemised mind had to deal with variable waiting times, confined spaces, no entry zones, toys he wasn’t used to, toys he was, and toys he had to stop playing with. And his intense sensory seeking was bombarded with bright lights, beeping sounds, buttons, flashes, people milling about and more. (All this was probably even more disorientating to him than the actual therapy, blood tests, occasional scans, lights shone in his eyes, and people testing – or simply misreading - him.)
Isaac would surface from these gruelling sessions puffy
eyed, exhausted and sad. This disgruntlement with the world left him out of
sync and out of action for the rest of the day. The same can be said for my
wife, and on the occasions I took him, me too. At least one of us had been
spared, knowing that our presence would have made things worse.
My perceived clarity of these events benefits from hindsight
of course. Was it that bad? Most probably. Knowing now what I didn’t then makes
it all crystal clear. It also provides something very instructive – that the
contrast to the visits to professionals where the environments accommodate him
as opposed to alienate him is stark. We still split activities between the two of us, as much for reasons of time efficiency as damage limitation. And Yoga is an activity my wife has been taking Isaac to that he simply adores. Now it was my turn. I would be taking him to this appointment with a professional on my own.
The instructions from my wife were, as always, deep and
detailed. Isaac’s daily schedules need to be carried out to the letter - surprises spell disaster more often than not. That much we know. I absorbed the instructions, fully preparing to apply them consciously. But then I had a thought. And it came
from the comparable anxiety and dread I used to experience - when I
would at some point physically drag this boy into and out of meetings; him
screeching, disapproving people everywhere. What’s the polar opposite of
deliberately and forcefully having to navigate Isaac around when he least
expects it? Letting him lead the way is.
Something he does with mummy, he knows daddy is taking him
this week - why not let him apply his exacting daily schedule to this event he so enjoys. Put him in a position of
control. I’d be the flexible one for the yoga trip. Ambitious and daring maybe.
But, as I say, the contrast to where we were brings things into focus.
From the moment we pulled up at the yoga centre – that I’d
never been to before – Isaac started to orchestrate proceedings in his (currently)
clipped tones and precise manner. “Daddy, stop the car please! This is
Charlotte’s house! We are going to do yoga now. Daddy can you stay outside,
please. Isaac kisses knee. Now we are going up in lift. Okay??” His commentary
style of speaking means that right now he resembles a 1950s TV football
reporter. With a slightly higher voice. There’s a purpose and momentum to
all his discourse. “Isaac, where are we going?” I asked, genuinely baffled by
the different doors, stairs and alley ways. “This way, please. Through the
door, daddy. To Charlotte, OK”, he said skipping adeptly through a door and up
some stairs.
Inside this predictably tranquil and composed centre, Isaac
ran into the arms of Charlotte. There was a shared happiness and appreciation
that something extraordinarily brilliant and fun was about to happen between
them. He took his shoes off in a swift way that I’d barely seen, and slotted
them neatly in a box in a way I’d never seen. And then together, Charlotte and
Isaac skipped into a room and closed the door. The smoothness and speed of
everything left me surprised but as serene as the surroundings.
When, pre-diagnosis, Isaac was being examined or having
therapy - or whatever –waiting to hear the next scream was heart in the mouth
stuff. Conversely, there’s nothing more heart warming than hearing the giggles
and elation of your at-peace son emanating from a room where he’s being
stimulated, developed and understood.
After twenty minutes, the door opened and Isaac, with a
sublime smile, eyes wide, delighted and fixed on mine, sprinted into my arms.
We hugged and I held him tightly, overcome. A five year old running into a
parents arms may be an everyday occurrence; probably not when the child has autism
though. And whilst Isaac is hugely affectionate (with ‘learned’ cuddles the
latest addition to his evolving physical language) this run and hug had a
more profound feel – and felt amazing. He ran because he was desperate to tell
me about what happened and I sensed that gorgeous anticipation, the connection which
was so constrained in his early years. I saw it in his eyes. Charlotte read the
situation immaculately, teasing out little questions for Isaac to answer and
sow together a little narrative from his session: “What did you kiss Isaac?” “I
kissed my knee” “What did you say?” “I said Isaac om..” “How do you feel
Isaac?” “I feel fantastic!” Isaac took me to the big, clunky lift (I remembered that going up in the stairs and down in the lift was the routine) and we waved goodbye to Charlotte. Then barely keeping up with him, we went to the car. And as we drove off, I reminded myself of the disgruntled, out of sorts, sad boy of pre-diagnosis, and then looked at this now calm and collected boy. He was content, I imagine, as much from the yoga as from knowing that his specific plans had been executed with the precision he yearns.
But as with all things autism, I made a note to appreciate the moment and not look too far ahead. A trip to the opticians with all its discomfort, unpredictability and need for Isaac to be flexible is on the horizon.
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Beautifully written. I was moved by the image of Isaac running into your arms, and your response to it. My grandson 7, has Aspergers (a wafer-thin tissue between him and your son), and my joy comes when he sits closely beside me and rests his head on my arm. He disikes hugs and will give one only if asked. His touch is feather-light too.
ReplyDeleteGood luck with the opticians by the way. Will you follow the same plan, ie, letting Isaac lead you?
Many thanks for your comments. Really interesting to hear about your grandson. I fear I won't be able to let Isaac totally lead the way when we visit the opticians; there will be too many unpredicatable events and his memory of the last trip will possibly distress him. We will prepare as best we can with a schedule of the day. Plan, prepare and reward!
DeleteMatt, thank you for writing so poignantly about the incredible, meticulous world that autism creates. Without direct personal experience of this, it's almost impossible to comprehend - but you've done a damn fine job of explaining it. My boy has Asperger's. Trying to get the right support, from education to respite, is so hard, and a full-time job in itself. It would be very interesting to hear about your experiences of this. We're in the middle of bringing a judicial review of the local (unlawful) social care policies around high functioning autism/Asperger's. Not ideal, when every day is exhausting enough in itself - but vital to ensure no-one else goes through what we've been through.
ReplyDeleteHi. Thanks so much for your comment. And whilst what you're going through is, as you say, far from ideal, I hope the review yields something positive...how selfless but inspiring of you to work towards ensuring no one goes through what you've been through.
DeleteI will write in the future about our experiences of help; my wife has fought hard and Isaac has had some great support as a result. I'm aware that we will need to keep on fighting as his needs change.
Hi Matt, I could relate to this so well. We used to have annual week long assessments for my J, similar to what you have described, and after two I simply stopped going because they were so distressing for both me and J. I think that the one thing we have to do as parents of children with a disability is remove the words "have to" from our vocabulary and just do the best we can, day by day. Good luck at the opticians!
ReplyDeleteThanks so much! I couldn't agree more with your words...
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ReplyDelete