The Cheese of All Walking

I haven’t posted anything for a while because, to be honest, for a long time I’ve been depressed at the prospect of another glowing report about Daigoro’s progress and yet another month of little to no (perceivable to the casual observer) progress for Kenshin. That sounds overly harsh - I should clarify:

We started having serious concerns about Kenshin’s mental and social development in mid to late 2010. Marli had issues earlier far than that – but I had thought it was just a small delay, well within norms for children and not something we should be overly concerned about. We had suspected something since Spring 2009 or so, but we couldn’t put a finger on it.

Back in Spring of last year (March 2011, as documented), we took him to a paediatrician, who in turn recommended speech therapy and additional testing for autism. We were referred to another specialist in childhood development, who ran Kenshin through a series of tests through the Summer and into Fall and confirmed what Marli had suspected – Kenshin is autistic.

Not Asperger’s Sydrome (apparently now dropped from official medical usage), not “mild” Autism or having an Autism Spectrum Disorder – full, “moderate-level”, “mid-range” autism.

It was a lot to deal with. As I joked to my sister at the time, I had no idea where I was on the Kübler-Ross model of grief. It was (still is!) sort of a roller-coaster ride. Wheee... denial... whoa... acceptance? No.... bargaining! Ooooo... here we come... DEPRESSION!

I’m wondering if I’m thinking I’ve run through it quickly and am already at acceptance, or what I think is acceptance is just an elaborate form of denial.

I know the stages don’t have to be sequential, or indeed, the “Five Stages” may not even be the best conceptualization of the grieving process for everyone. I think right now I’m mostly angry, angry that this has to happen to me, and angry that I’m selfish to think mostly of the effects that it has on me, rather than Marli or the most important person being affected, Kenshin.

Marli and I had a very earnest discussion in September and I tried to be as honest as possible about how I felt, and I was surprised at how selfish I sounded, and said so at the time.

I guess one of my innermost personal failings is sometimes I have a overblown sense of what I think I deserve, and I keep thinking, “Why is this happening to me? I don’t deserve this - I deserve better!” Then I feel guilty about it. Ah, the existentialist post-modern conundrum.

So, internally, I’m mostly shouting “why me?” to myself, and then getting angry about not being concerned enough about the people around me. Then I realize there’s not much to be done about it except to just carry on carrying on and help out Kenshin as much as we can. My family was and is being being very supportive and it’s still early, of course.

Fortunately, we’d been suspecting this for well over a year now before we got the official diagnosis, and wasn’t not as much of a shock as if we had been told of something unexpected, but it’s still a punch in the gut, no matter how much you’re prepared for the blow.

Marli and I share a sort of gallows-humour about a lot of things, so I hope you’ll forgive me if I seem flippant at times. At times I’ve thought to myself, “well, at least it isn’t some terminal illness, like untreatable leukemia, or Tay-Sachs... but at the same time, you don’t have to live with and support a person with a terminal illness for 30, 40, 50 years.” Yes, Kenshin may turn out to be high-functioning enough to live on his own, but he may not, we don’t know.

Marli said at the time, “Well, it could be worse, he could have Tay-Sachs or he could be profoundly autistic. We should be thankful.”

I responded, “Yeah, but that’s like saying, ‘You’ve only gotten a $100 fine. It could have been $2000.’... That may be true, but it’s still a fine.”

I actually have a friend who has an autistic son who went from mid-spectrum in toddler years to high functioning in his pre-teens (he’s 10 now) and we got together to compare experiences and for me to take notes on his approach. He has the advantage of being quite well-off, financially, so it’s a little different for him (he had multi-hour private therapy lessons for his son five days a week, I believe), but I guess I can’t complain when Marli and my combined income is relatively high compared to the “average”.

During this time I couldn’t decide about what to document – this blog had begun as a tool to help me keep track of milestones and moments that otherwise might have passed, forgotten – but now it was becoming a painful reminder of how difficult progress was for Kenshin and how well Daigoro was doing as a normal (dare I say “gifted”?) child. This sounds horrible, but I felt terrible about the apparent favouritism a blog like this would seem to project, “Hey, Daigoro is drawing entire comic books! Oh, and Kenshin has mostly recovered from his relapse with potty training accidents.”

Does that make me a terrible human being? Do I lose my “parent of an autistic child” card now?

This, combined with the extra effort to help teach and entertain Kenshin, had put me into a pretty bad mental state for a long time - probably too long. I let things slide which shouldn’t have slid. I started feeling sorry for myself far too often, which I have done before from time to time, but it was seriously dragging me down. I tried to keep a stiff upper lip, but it was hard. Really hard. Marli suffered as well, perhaps more so, for a variety of reasons.

Anyhow, the long and short of it is sometimes I feel like I’m handling it well, and sometimes I think I’m just bottling it up and at some point the facade’s just going to come crashing down.

Things have slowly started to get better. We enrolled Kenshin in speech therapy shortly after the last blog entry. After six weeks he had made decent progress, learning more social cues and turn taking. More testing followed, at which time the confirmation of his autism was made. A flurry of paperwork and phone calls (mostly handled by Marli) later and Kenshin was on the waiting list for a number of programs, including the local respite services and Applied Behavioural Analysis (ABA) therapy sessions, and we also started to coordinate with his school for special programs available through the school. That’s still in progress.

He started a second round of speech therapy, once again concentrating more on the social/behavioural aspect of speech as opposed to the mechanics of it. His teacher, “S.D.”, was very pleased with his overall progress from the first session to the last, commenting on improved eye contact, initiating contact without prompting and generally understanding the order of events in a social gathering and turn taking.

He finished that last week.

His ABA therapy has been in progress for three weeks (he had to miss a session this past Saturday) and results aren’t yet readily apparent, but it’s good to see from his progress records what goals they are working to and what he’s able to do.

There’s a lot he can do, perhaps better than the “typical” autistic person his age (if such an thing exists), but also a lot he can’t. I’ll try to come up with a short list with Marli’s help.

He’s bright. He can puzzle his way through iPad games with frightening speed and seems to grasp some things quite intuitively, especially how to get at things he wants. You can see the cogs and wheels turning in there – he’s pondering something much of the time.

He’s funny. He laughs frequently (very much not typical for autistic kids) and he has a mischievous grin that is utterly disarming and cute. He says (seemingly) random things, like, when the family is cuddling in the queen bed, calling himself “the cheese of all walking”, Daigoro the “sausage of all skipping”, Marli the “noodle of all hugging” and me the “meat of all looking”.

Or, as we were on our way to Walmart, he said, spontaneously “Walmart and Grommit”!

This past Sunday I took both the boys to a park to go tobogganing. They laughed and ran and sledded and smashed into each other and behaved just like I’d expect a four and six year old to behave. They were having a grand old time. For a moment - just a moment - I forgot that Kenshin is autistic and I just revelled in their happiness and my own happiness about their happiness.

Wiser, more experienced parents of autistic kids would probably say, “That’s exactly the way it should be. Why would you think otherwise?” You should never think your son or daughter as “damaged” or any less worthy of your love because they have a disability; of course not. But is it not human to want to have a “normal” child? Yes, I know people with disabilities hate the “normal” word. I’m going to go ahead and be politically incorrect here. I didn’t want this, I didn’t ask for this. Kenshin, if you’re reading this at some later date, forgive me: I want you to be normal.

As I watched them, my smile faded, and I remembered that I would have to make sure Kenshin went to the bathroom before we left because he wouldn’t think to ask for himself... and that I was going to have to plan for some extra time at the coin-op car wash that I’d promised to take them to because he often doesn’t understand consequences so I’d have to be extra careful about letting him use the spray hose... and I couldn’t just hand him a juice box when we got back to the car because he might oversqueeze it and spray it all over his seat because he thought it was funny... and to make sure he didn’t chew the straw into a pancake of plastic because of his need for oral stimulation... and... and...

A dozen worrisome things popped into my head, swirled around and pushed that shining moment of bliss into the back of my mind. Clouded by shadows of doubt and worry, I lost it.

But I’ve grabbed it again and I’ve written it down here. It was joyous and momentary and all the things that are good and true in life, and it didn’t matter if Kenshin was autistic or not, because I love him so much. I will remember that hill and that moment in all the dark days yet to come.

I'm feeling better now - the therapy and group sessions are ongoing and seem to show promise. Kenshin continues to improve day by day, in tiny, almost imperceptible ways, but over time they add up to progress. I'll try to do my best to observe the little things which might be big steps for him.

I've gotten my head out of the bad space it was in and now I'm trying to push forward with a more optimistic view. He is the cheese of all walking, after all, and it takes a while for the cheese to pick up speed. In the meantime, I'm the meat of all looking.

Whatever that means.

Looking Up

This past month has been running hot and cold... some very busy weeks and some very ordinary. We took the kids on a fairly long road trip to Montreal this past weekend to visit family there. They travelled well but we had made an effort to travel mostly at night. (For future reference, 550km / 5.5 hours direct by 401, 620km / 6 hours by a detour to visit other relatives in Carleton Place). It was fun to see their faces as we pointed out the rising sun - I don't believe they've seen one other than on TV before.

Kenshin figured out how to crawl this weekend and has been scooting along with more and more confidence in the past three days. It's amazing really - before this past Sunday (November 18th) I'd say he was about 10-20% of the way to crawling as well as any toddler his age. Now he's about 70-80% a scarce four days later. Incredible learning rate, these humans.

Kenshin has also cut his primary left maxillary central incisor (the one beside the first one) and the tips of the matching top two teeth can been seen just under the surface of the upper gums. It seems that Kenshin, much as Daigoro did at his age, will be cutting all of his teeth in a hurry.

On a relatively unrelated note, I was thinking today about the question oft-asked of me, "what do you think are the differences between the boys?" It came to me rather randomly today that Kenshin has a very noticeable tendency to look up and around. Now, this seems like a relatively minor difference, I know, but as much as Daigoro was/is a very observant child, he didn't seem to look up as often as Kenshin does. This gives Kenshin a sort of dreamy, star-gazing quality at times, especially in the evening and early morning when he looks up at the lights and the small starfield ceiling pattern I've mounted over his bed. It's quite nice, really. Some people have observed that Kenshin seems to be more of a "watcher" (compared to the "doer" that Daigoro is at times); I'll agree that Kenshin is more patient and observant.

Daigoro continues to surprise me with his memory and comprehension. He'll often remember the location of objects or something that we did together several months later, without having seen the object or done the activity since.

For example, I bought a picture frame from Goodwill almost eight months ago which contained a picture of a Lamborghini Countach mounted on a cardboard backing. I only needed the picture frame, not the picture - but the picture itself was mounted on some heavy cardstock which I figured I could use some other time, so I kept it. I had shown the picture to Daigoro once or twice; we used it for a few evenings as a door to play with in a "fort" we made under the kitchen table. Eventually he tired of the game, so I tucked it behind a piece of furniture in our dining room and haven't touched it since. Last week, out of the blue, he tapped the piece of furniture I had stored it behind and asked to see the "picture of a car". I had actually forgotten it was there but, once I figured it out, I pulled it out for him and he was very pleased, behaving as if he knew that's where I had been hiding it all along.

He's also developing some unsavoury whiny traits that seem fairly common to toddlers (especially two-year olds) that we had hoping to avoid - demanding treats when none are forthcoming, throwing tantrums when asked to go to bed, etc.

He's still, by and large, a fairly easy going kid, but it's... disappointing? Frustrating? - I don't know the best word to use in this case - to see that he can be just as annoying as anyone else's kid. I suppose most parents think this way; they hope/think that their child isn't the one who pushes or shoves or throw tantrums or won't eat his supper. Someone has to be "that kid". I guess you just don't expect it to be you, especially when you put so much effort into discipline and loving and setting boundaries and yadda, yadda, yadda.

In any case, he's two and a half. I don't expect him to be perfect. Just blowing off some steam.

Standing at the Threshold

I have a personal fascination with human memory. One of the aspects of memory which I always find interesting is the capacity for human beings to forget how painful or difficult a particular episode or period was. Which is not to say all memory of the incident or time is completely forgotten, but you never recall fully how painful something is after the fact. For example, I remember that the pain of breaking my collar bone in a biking accident when I was 24 was quite intense, but when I remember the incident, no matter how hard I try, I can't evoke the sensation of pain exactly.

This is a very "good and sensible" thing, if you think about it - people would be collapsing in pain every time they thought of a previous injury. Similarly, women might really think twice about having children a second time around. Perhaps you have injured yourself a second time after receiving a painful injury previously and thought to yourself "oh yeah, that's how that felt." Now imagine that with the pain of childbirth. Nostalgia is a useful (and sometimes dangerous) thing.

Quite aside from physical pain, there is the difficulty of mental or physical stress; which brings me to the main thrust of this post - we're expecting our second child any day now. We're about to go through the whole rigamarole of sleep deprivation, which I touched on in a previous post, all over again. This time, we'll have the added challenge of a toddler.

One co-worker has commented to me that marriage is a change in your life, but relative to having your first child, it is quite minor. He then went on to compare the jump from one child to two as being a seismic shift similar in magnitude.

So here I stand on the threshold of another portal, looking back at the path that has lead me here, and peeking through to the paths beyond. I feel both elated at the ground we have covered so far, and daunted by the unknown terrain ahead.

Daigoro is steadily improving his vocabulary. Every day he seems to be able to apply the correct new word to an object or action. Marli and I find ourselves increasingly unsure if his new discovery is as a result of one of us specifically teaching him or Daigoro just picking the word up on his own. He is growing emotionally as well. This morning I watched with fondness as he lay down beside our cat and stroked it gently. He seemed pleased to be able to interact and be gentle with the cat, to which the cat responded with a few licks and purring. When the cat became a little impatient with Daigoro's attentions, he gave Daigoro a gentle bite, which cat owners will recognize as being playful as well as cautionary in different situations. Instead of reacting fearfully, Daigoro withdrew his hand and said, "kitty, no biting," not angrily, but as a loving parent might chide a wayward child.

Similarly, Daigoro has in weeks past displayed touching moments of empathy; pulling a blanket over a stuffed bear for warmth, wanting to help put a diaper on a baby doll. He almost always reacts positively to images of babies, smiling and pointing with delight. While I'm sure that his reactions will change as a new baby begins to live with us 24/7, I'm also satisfied that he's emotionally well-adjusted enough at the moment that he should be able to adapt well.

We're heading into Easter weekend, a celebration of a great transformation - an unimaginable leap from one state of being to another. A very appropriate time for a second child to be born.

Circle Game

I've recently invested some time in transferring parts of my moderate-sized CD collection into MP3 format for use on my iPod 30GB. Yes, I'm officially about five or six years behind the curve in terms of this technology, but I've never been a big "music guy". I enjoy music, but it doesn't seem to define my life in the same sense that it does for many people.

In any case, I was bopping along on shuffle mode when Joni Mitchell's song "Circle Game" came up. My pace slowed a bit as I paused to listen to the lyrics. Here they are reproduced in part:

Yesterday a child came out to wonder
Caught a dragonfly inside a jar
Fearful when the sky was full of thunder
And tearful at the falling of a star
Then the child moved ten times round the seasons
Skated over ten clear frozen streams
Words like, when youre older, must appease him
And promises of someday make his dreams

And the seasons they go round and round
And the painted ponies go up and down
Were captive on the carousel of time
We cant return we can only look behind
From where we came
And go round and round and round
In the circle game

I almost stopped in my tracks. I was really getting choked up listening to the lyrics. I don't know if most parents do - I suspect so. Same thing probably happens to men who listen to "Cat's in the Cradle" by Harry Chapin. It's horrendously cliché, I know, but it's hard not to be affected by the enormity of the passage of time and the cyclical nature of parenthood/fatherhood.

So I'm trudging along thinking about how I could possibly be getting more out of the experience of fatherhood, "savouring" more, as it were, as well as putting more into it for Daigoro's sake. As it goes, I think I'm doing pretty well - but we'll see.

Not really anything to do with Daigoro, to be honest, but certainly made me take a moment mentally and think about exactly what this whole business of being a father means. It reminds me of what I debt I owe to both my parents for giving me a loving and nurturing childhood. Not entirely without strife or darkness, of course (that would be pretty damaging in itself) but by and large, a excellent foundation for my own turn as a parent. When Daigoro smiles and hugs us, it feels like warm sunshine embodied in a little squirmy package. There are definitely perks to being a father.

I'm nostalgic by nature - I tend to really become attached to places and memories, probably more so than is good for me. The song makes me think ahead to moments when Daigoro won't look at me with the same shining love in his eyes, to times where he'll hate me or fear me in turn. The passage of time for a parent is both stunningly quick (when considering it in retrospect) and occasionally agonizingly slow (when trying to endure another fifteen minutes of a cranky toddler).

Daigoro is starting to use more words to express more of his opinion.

"Stop it! Stop it! STOP IT!!!" (general emphatic disagreement with what we're asking him to do)

"No, thank you." (in response to bathtime or the need to get ready for church)

I'm starting to ramble a little now... perhaps I'll edit this entry later. I just wanted to capture my feeling on hearing this song and thinking about Daigoro and the upcoming addition to our family.