Trying on a new hat for a good fit…

autism3I’m considering having this made into a t-shirt ;)

Generally speaking, in our daily lives, we are fortunate enough to have a wide circle of loving and understanding friends, who have made it their mission to investigate the situation we find ourselves in with Ted, and how best to interact with and understand him. Those who cannot understand it, or who expect us to ‘carry on as normal’, have naturally fallen by the wayside. Without rancour, but it is much too stressful to pretend to be something you are not, to have to keep apologising for something that should require no apology, to navigate places and people who have unrealistic expectations of what is possible. It is a much less stressful proposition, we have learned, to have a meal with friends at their house, or at ours, than to attempt to sit through a meal in a restaurant. Although we are learning those little tricks I have mentioned before (stocking up on little toys from pound shops etc) to get through such situations, should we have to.

We don’t encounter too many folks who clearly weren’t told not to stare as curious children, but the sad fact is that we tend to avoid areas and situations where there are too many people or too many expectations to conform to a standard mode of behaviour since, as I have mentioned before, judgment is never far behind when you are attempting to live a ‘normal’ life out in the big, wide world, with an autistic child in tow. And of course, as I have said before, part of the issue is that there is nothing obviously marking an autistic child as autistic. By and large, an autistic child looks like any other child. Which reminds me, I also love this:

met one

Because the fact is, while autism has many common traits, no two children display the exact same ones, and like every other child on the planet, each is different. So there is a very real danger of making assumptions or basing expectations for a child with autism on your experience of another, totally different child.

At the outset of Teddy’s investigations I, too, was guilty of the sentiment behind one of the most common exclamations I hear:

“Oh, I thought they weren’t supposed to be able to do that!”

It’s a difficult statement on many levels. First, your child is being lumped in with everyone else, which is never a comfortable situation, even without the challenges that autism brings. Secondly, it can engender a very uncomfortable desire to defend the diagnosis and, if you are not careful, you can find yourself listing all the ways in which he does conform to it. That brings with it a horribly dirty feeling of betraying your child, since you spend the vast majority of your life with this small beloved person focusing on the positive. On what he can and does do.

A simple example to demonstrate this point is that many autistic children cannot stand to be touched. Teddy, on the other hand, spends that small portion of his life that he is not running around his immediate environment, climbing furniture, or demanding food, snuggled into or onto either of his parents, usually with the command: “Big cuddle!”

You know what? It’s a minefield. You think one thing is positive and a sign of hope, and then someone in the field of paediatric care comes along and says “Ah yes, they often do that. It means…” something completely opposed to the hopeful spin you had given it.

But no matter what anyone else thinks, says, or has experienced, Teddy surprises and delights us every day. The moments in which we throw one another puzzled or dismayed glances at some particularly troubling new development or behaviour are regularly and completely eclipsed by the moments in which our hearts and souls soar with love, pride and joy at some tiny, tiny milestone we were never sure he’d reach.┬áSpeaking to his occupational therapist the other day, I said to her “It’s baby steps, really…” and she looked at me quizzically.

“Have you said that before, during this meeting?”

“No. That’s the first time.”

She paused.

“Then it was one of the mothers I saw this morning. The exact same words, in the exact same tone.”

There’s a reason for that.

As soon as the word autism has been heard (and you will never unhear it), the facts, experiences, and literature ingested and digested, the biggest and most helpful thing you can do is open your mind (your heart, of course, is already cracked wide open) to everything. And your eyes and ears. Because, if you are not careful, you can miss those baby steps.

Two years ago, when Teddy was progressing more or less as you would expect for an 18-month old child, he could tell you all the sounds the animals make. It was one of our favourite party tricks and I remember very clearly the pride we felt as we heard his beautiful responses.

As he became less and less verbal and responsive, he stopped doing that.

But with the acceptance of his challenges, investigations into changing his diet which produced immediate and dramatic results, we have watched him slowly coming back to us.

Driving to nursery the other morning, we passed a field of cows.

“Moo,” said a little voice from the back seat.

Baby step. Don’t miss it!

“Yes…! … Teddy? What does a sheep say?”

“Baa!”

“Yes! What does a dog say?”

“Woof woof!”

Once, such responses were taken for granted. Now, the smallest response can set you up for the rest of the day. Once, I was grateful for big things, and took the rest for granted. Now, the smallest things rock my world.

If you want your child to be understood, I have begun to learn, then you need to teach people how to understand him.

autism2

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About Alice

I'm a mother, I run a business, I make things out of wool, I take pictures. And I write about most of those things, on a very sporadic basis :) View all posts by Alice

2 responses to “Trying on a new hat for a good fit…

  • Patricia Appleton

    I probably don’t do my autistic daughter a service just because I hit the end of my rope w/ “normal’ people and explaining how to understand her behaviors, Rituals and patterns. I applaud how you have embraced your son and accept his uniqueness. Most my friends and family have fallen to the wayside not knowing how to deal.I gave up any kind of relationship over 20 years ago. I look back now and it’s so clear she has taught me so much. I had to change to accommodate who she was/is. She is now 32 and I’m approaching retirement still lives w/ me and tho sometimes all I can do is go in my room and close/lock the door there is much personal growth and maturity happening w/ her. Baby steps for sure but gained confidence and self esteem. Luckily I’ve adapted to life’s demands enjoy our home life and house full of kitties. When I can’t cope w/ her needs she’s old enuff to leave alone a few hrs and I can escape on my bike…Thanks for sharing…

    • Alice

      Patricia, thank you so much for sharing your experience. We have only just embarked on this journey here, and it is all still fresh and raw.
      Your comments about your lessons – both of yours – are so heartening.
      I do hope you give yourself credit, from time to time, for the safe home and haven you’ve provided for your daughter…?
      I read today, on a Facebook page for Autism families, how easy it is to underestimate how well you’ve done, how much easier it is to find fault with our actions / reactions. 32! You’ve done so well!
      With love <3

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