Left Brain Right Brain

  In retrospect I will realise that I am already quite stressed when I get off the train and walk through the doors to be confronted by the steepest set of escalators I have ever had the misfortune to encounter. There have been changes and garbled messages that have added to my uncertainty and now, having panicked at a change in the ontrain destination screen I have got off the train a stop early and now have to explain to my friend why she has to go further out of her way to meet me. I am feeling thoughtless in the sense of being unable to think clearly and thoughtless in the sense of inconveniencing someone and my mood, therefore, cannot be said to be ideal.

 The escalator rises up, steep and relentless in its motion. Never stopping, constant up and rolling motion that doesn’t allow for any individual difficulties the person might have when encountering it. I read the instructions several times, then take my older lad out of his buggy and get him to hold my hand. There are no worries about him, he adores going up these contraptions and most of the time I’m pretty ambivalent towards them, Except today, when having to hold his hand and hold onto the buggy as well means that I can’t get a balance on the bottom step. To those watching my actions would probably seem ludicrous, even laughable. I take a step and place my son on the step as well. I move my other foot forward and then sway backwards. It’s an act that should be simple, should present with no difficulties and yet I cannot counter my co-ordination problems. Later, I will realise that I should have placed my son on first and got on the step below him, dragging the buggy behind me, but now, in the state I am in, rational thought and myself are not compatible.

 Then it happens. My legs seem to freeze, my mind stops even trying to think of solutions and I’m standing at the bottom at in tears, trying to quell the rising wave of panic that is starting to grip me. I remain gripped by an inertia brought on by stress and worry and uncordination, an intertia that hasn’t held onto me this strongly for weeks and I’m staring up at the seemingly impossible before me.

 It appears to be an eternity, but i nreality can only be a couple of minutes before the next train pulls in and a man approaches the same set of moving steps. Straightaway he offers to hold the buggy and, with more gratitude and relief than I can show I thank him and take my son’s hand, no longer trying to balance and co-ordinate to the same extent. I phone my friend who later tells me that there is, in fact, a lift I could have taken and had I gone out a different exit I would have discovered this. I do my upmost to pretend this was not said.

  And now I am looking through a recipe book, trying to work out how to go about preparing one of the meals. “A medium sized onion.” How large is that exactly? What if I go to the supermarket and there are no medium sized onions? “Dripping?” I can’t abide the thought of dripping. Can I dry fry it? Use oil? There are so many steps to this recipe, I’ll never remember them, I’m getting confused just looking at it and yet the result would be rather nice.

 I look at it again. Look at the ingredients. Check my cupboard and realise I have most of them and those that I don’t have can be replaced. I put down the book, ignoring it and start making up my own recipe. It turns out to bear as much resemblance to the one in the book as a domestic cat does to a tiger, but it works well. I have found alternative to a seemingly insurmountable problem.

    There are times when the escalator cannot be tackled on its own. Sometimes someone will lend you a hand. Sometimes you will find an alternative and bypass the problem. Sadly, sometimes you will be left standing at the bottom waiting until you can see a way up it yourself. For those of you standing at the bottom of your own escalators I hope someone carries some of your load for you, or directs you to a different way.

Just over 2 1/2 years (and just over 200 posts) ago, I started an autism related blog called 29 Marbles. Writing that blog helped me better understand not only autism, but my thoughts and feelings about autism. As I’ve come to better understand these things, I’ve found that I’m writing less and less. I was considering just stopping, but like Kev I just couldn’t bear the thought. I was very happy to take Kev up on his offer of participating in an autism team blog.

The “c” word – cure – was back in my mind this week thanks to Kristina Chew’s post The Cure Question earlier this week. By way of introduction (for those who don’t know me), I thought it might be good to give you my thoughts on this question.  (This is an update of an earlier post on 29 Marbles.)

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In any discussion about autism, especially with parents of newly diagnosed children or friends/family who have no direct experience with autism, the subjects of cure and prevention will inevitably come up. “Can you fix him?” “What went wrong?” “I’m trying to get pregnant, is there anything I can do to make sure my kid isn’t autistic?”

The answers to these questions depend quite a bit on whom you ask, and also when you ask them. In one of my early posts to 29 Marbles, I wrote the following:

“We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?”

Pose this question to a group of parents of children just diagnosed with autism, and chances are you would get a very quick, passionate, and nearly unanimous response of YES!!! Ask this question to those parents of older children, though, and the responses would likely be more hesitant, not quite as passionate, and definitely not unanimous.

In (R)evolutionary parenting, MOM-NOS describes how her feelings have changed toward her son’s autism over time:

When Bud was initially diagnosed, I viewed autism as “other” – an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.

Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part.

But as I came to understand Bud better, I learned that his autism is not…one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy.

The other key thing we must consider as our kids grow older is that they will develop opinions of their own about their ‘condition’ in life. If you were to present me today with the cure question I asked above, I would be unable to answer. Not because I’m undecided about what I would do, but because I think at this point (15 years old) it is no longer my decision alone to make. Sure, as a parent I would expect to have some input, and would do my best to make sure my son understood the implications of both options.

If you had asked me the question 13 years ago, I would have had to decide. Not knowing then what I know now, I have no doubt that I would have quickly and unreservedly said, “Yes.” But if I had known then what I know now, what would my answer have been?

pregnant pause

In many ways, asking the cure question at the initial diagnosis (assuming it was early enough) is the same as ‘preventing’ autism in the child; if the autism is removed before it has a chance to “infuse every part of him and it shapes who he is in this world,” then the autism will have been prevented from being a defining part of the child. Is prevention a ‘bad’ thing? Again, it depends on whom you ask.

If you are talking about pre-natal testing, the discussion will range from “with this test you can determine if your child will be autistic or not and decide whether or not you want to have him” to “this is the first step to eugenics and wiping out of autistics.” I’m choosing not to engage in this discussion in this post, though I’m sure it will come up in the comments and in later posts.

If, however, you are talking about prevention through a “shot” like I mentioned above (I know, I know, this is not the way it would probably work – please bear with me), how would you answer the question. What factors would you consider?

I can’t help but go back to the questions in my mind that prompted me to write To hear or not to hear. What do I want life for my son to be like? What options do I want him to have? What will he think of my decision when he gets old enough to understand what I have done?

If I had a child who was born deaf and I was told by the doctors that through surgery my child would be able to hear, but the longer I waited the harder it would be for my child to transition from a non-hearing world to a hearing world, I must admit that I wouldn’t hesitate any longer than it took me to figure out how to pay for it. Why should I think any differently about autism?

By saying I would prevent autism at an early age if I could, I’m not saying that I don’t value my child as he is now. I can’t imagine these past 15 years without him (or his autism), and it is safe to say that my career path, my wife’s career path, and my other son’s life would be completely different had we not lived in Autismland all this time. But at the same time, I have no doubt that life without autism would have been just as enjoyable and rewarding, yet filled with the more ‘typical’ challenges that parents of teenage boys experience.

Parenting is hard, mainly because it is a long-term investment of time and effort (and money, of course) with a high degree of uncertainty about the final outcome. The things I do today will have impacts years from now that I could never imagine. I see one of main roles as a parent as the one who sets the path along which my children will begin their journey in life. Along with that, it is my job to help them understand the path they are on, the future paths that lie before them, and an understanding of how to navigate the world.

Or, as MOM-NOS says in (R)evolutionary parenting:

I will try to help him build the foundations that will serve him best [as an autistic person in a largely neurotypical world] – foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he’s learned.

Or not use them.

My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.

Parenting is hard, and every parent approaches the challenge in different ways. I don’t like the way some people parent their children, and I am in awe at how others make it look so easy. This applies to both “typical” parents and autism parents. But it is not my place, nor anyone else’s I believe, to tell another parent how to raise their children. (And no, I don’t believe anyone else should tell me how to be a parent either.)

In the end, parents answer only to themselves (obvious legal/moral exceptions aside) and, when they get older, their children. I’ll leave it to them to judge.

  “Now this” I inform my son who is busy helping to get himself dressed, “is a pirate jumper.” I cover up one eye and then mime “jumper” for him as I do so. He doesn’t reply, but places his arms through the sleeves and then makes a good attempt at yanking the body of the jumper down. I carry on nattering to him.

 “Do you like your pirate jumper?” (hand taps heart area, hand over eye, tap arms). “Pirates say ‘shiver me timbers'” (hand over eye, shake shoulders, forearm on top of fore arm, the last one being improvised) He grabs my hand and places it onto his trousers that are lying on the floor.

 “You can put those trousers on yourself” I tell him, miming “you” and “trousers” as I do so. He stands up and immediately places both legs in the same hole, struggling and falling over.

 “Nearly”, I tell him.” “Sit down and try again.”

 He remains standing, trying to pull the waistband up, not realising why he’s finding it difficult.

    “Sit down” I tell him, adding the sign this time. He carries on with his endeavours. I’m torn between wanting to help him and wanting him to learn how to get himself dressed without any help. He appears about to tear the material on his trousers without any help. I make one last attempt to get him to sit down and the problem is solved when he falls back onto his bed and rather angrily takes his trousers off himself. The next try is rather more successful.

 “You’re going to nursery this morning” I tell him as we walk down the stairs to wait for the bus. “The bus will be here soon. Bus for nursery” (hands mime big steering wheel, hand up to face and round in circles to show the nursery).  He keeps quiet then starts humming a song about rabbits and their dastardly attempts to munch a plot of carrots.

 “Do you sing that song at nursery?” Again there is no reply. The bus turns up and he gets on it happily enough. I hope that the home school book will have enough information in it to help me talk and sign to him about what he’s done.

 Five hours later and we’re walking to the playground. He understands the sign for that now, thanks to “Something Special” doing a show about it the other day. As we’re approaching the park it occurs to me that I’m not sure where the entrance is, since we usually go to a different one. I confidently walk up to where I think it is and realise that the gate’s on another side, which means backtracking.

 “Wrong way” I tell Tom and his brother, who is sat in the buggy, though with designs on escaping the second my back is turned. “We go round”.

 This is not in Tom’s plan. We were going to the playground and now we are going AWAY from the playground. Not good. Not good at all. He says nothing but insteads sinks to the ground, tears streaming down his face.

 “We’re going to the playground” I try and reassure him. “We have to go to the gate.”

 His sobs become louder. I move to pick him up and he struggles, refusing to be carried or persuaded to walk. I look at him in despair.

 “Think!” I say to myself. “What would Mr Tumble do?”

 I kneel down besides him, my hands wiping at his face and hug him tightly. He cries for a bit more then wipes his face on my shirt. His hands move up to my chin and he starts moving it up and down, then starts to pull at my hair. One hand then moves up towards his own face and he covers his eye.

 “Are you a pirate?” I ask him, covering my own eye. He repeats the pirate sign several times.

 “Pirates say? …” I ask him

 He shakes a bit from side to side, then places one forearm on the other.

 Five minutes late my fearsome little pirate is battling  the slides.