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.

Catching Up...

Well, it's been a while.

The usual excuse for bloggers is lack of time, but we all know it's just plain laziness.

A lot of things happened in a year. I'll highlight the big ones.

Daigoro left JK and entered SK. He's thriving there - I'm very proud of his progress and his report cards (they have report cards for kindergarten?!) seem to reflect that he's a good influence in the classroom and a quick learner. He still has problems with being impatient with other kids and becoming frustrated with tasks he doesn't master quickly, but generally he's doing well.

Kenshin has advanced in many ways. Since the last entry, he's become much more interactive and willing to eat new foods, but he's still behind in several key developmental milestones.

He hasn't mastered washroom training, and he generally is communicative only as much as is necessary, rarely "volunteering" information other than parroting or combining known phrases. Late last year we had him tested for hearing (fine, or actually better than average) and then a couple of months ago we took him to a pediatrician specialist in development at Sick Kids Hospital. The specialist did a number of tests, many of which he completed quite well, but he also gave us a questionnaire which is typically used for autism spectrum disorder / Asperger syndrome diagnosis. We have suspected/feared this outcome for some time, beginning shortly after his delayed beginning of speech, but we were encouraged by spurts of development that have occurred since.

Last week we took him to a child development centre for speech analysis. He scored lower than average on many tests, but the analyst was reluctant to put too much weight on the scores because it was evident that Kenshin was performing poorly on some tests not because he couldn't answer the questions, but because it seemed he didn't want to.

The analyst feels that we should enroll him in a six-week, hour-per-week social/peer speech group to encourage better interactive behaviour. We remain hopeful that as we continue to focus on encouraging to speak and interact with us that we will continue to see the slow and sporadic improvement that we've seen over the past two years.

This past weekend we went out to a Thai restaurant as a family and we actually had a very nice sit-down meal, with no squirming, running about or behaviour issues. This was a really nice milestone - one worth remarking on.

I'm still chuckling at one of Daigoro's comment's on the food, which he was thoroughly enjoying.

"This is like a Heaven breakfast!"

Both of them are growing like weeds and we're constantly amazed at how big they look in bed or when we're carrying them around.

Daigoro is reading above his level and is very pleased with himself. We're proud of him too.

Last year Marli won an iPad in a contest and we've discovered that Kenshin is drawn to handheld electronics like nobody's business. He loves iPads, iPhones, laptops, desktops - anything that has buttons and a screen... or just buttons. He loves to fiddle and change things. He's managed to delete all of the photo's off my parents' digital photo frame, create new user profiles on our PS3, dial the Philippines on a relative's phone, and install new applications on my father's smart phone.

Just this past weekend, he's figured out that he can climb on our entertainment console to get up to the small box (he calls it "a bag") in which we store our remotes and PS3 controllers. When confronted, he says "I was not climbing!"

Another favourite recently is "I'm just..." as an abbreviation for "I'm just doing this." as a way to put you off asking him to do something. Similarly, he likes to say "I'm working." to indicate he's busy and shouldn't be interfered with.

Milestones

Last week, Daigoro successfully read about fifteen different words independently of prompting after Marli wrote them down for him. We celebrated by taking him to the local library and getting him a library card.

This past weekend, Kenshin requested to sit on the toilet (seat) and peed on his own.

Daigoro has become very interested in Pokemon after I bought him a video game (Pokemon: Colosseum) which features them. I had tried to sell him on Animal Crossing or a few other less competitive games, but he was very interested and I figured that I couldn't just buy completely innocuous kids' games forever.

Daigoro is expanding his eating tolerances, but Kenshin remains firmly in the starch and meat category.

Kenshin and Daigoro have been invited to a few birthday parties at a local playground/party room location - it's a lot of fun seeing them rip around having a grand old time.

Not much snow so far this year -making it hard to make snowmen, snowballs or go for sled runs. We'll see how the rest of February pans out.

A Smorgasbord of Events

Well, the last month and a half have been a whirlwind of activity and development. We found a new house here in Toronto after a fairly in-depth search. Daigoro and Kenshin were very patient as we trucked them around from house to house. Daigoro would often ask if there were "guys" (kids) or toys in each house as we went in, as one of the earlier houses we toured had toys on display in one room.

We're happy with our find, which should give us a lot more elbow room in the long term. It's close to schools, parks and shops, as well as being not too far from where we are currently, so many of the social contacts we've already made in the area won't have to be dropped. I'm also pleased that it's actually closer to our current United Church, so we'll be able to stay on with the congregation there without a long commute each Sunday. The commute will be shorter for Marli and only a few minutes longer by bike (and shorter by transit) for me, so it's a great find.

Based on the way we're bursting at the seams in our little two-bedroom apartment currently, moving day couldn't come a day sooner.

Kenshin is more mobile in his cruising and occasionally stands without support, though still nowhere near as rapidly as Daigoro seemed to progress. In the past two weeks, he's been increasingly hyperactive (in the non-clinical sense) which has been a little bit of a strain for Marli and me. Some of his increased awake time and night-time feeding may be due to yet another pair of teeth coming in, the first of which poked through his gum this morning. Kenshin's current favourite toy is a Curious George jack-in-the-box which he received as a gift from his aunt this past Christmas; it absolutely entrances him when it plays. He generally shows a markedly higher interest in music and rhythm than Daigoro ever did; Daigoro is not uninterested in music, but it's not his first love.

Daigoro swings between being a really resilient and well-behaved kid to a whiny little so-and-so, with the decent majority of it being good rather than bad. I suppose that's entirely normal for a kid his age, but I can see how some parents start to lose their cool about now. I have a comparatively short fuse when it comes to whiny-ness, whether it be children or adults. I tend to think I'm a fairly patient guy otherwise, so it's difficult for me to find myself blowing my top at times. His hand-eye coordination development continues to impress me, just last week he drew a pretty credible version of a whale which had a striking (but coincidental, in my opinion) resemblance to West Coast aboriginal art depictions of whales. I'm pleased that he's showing an interest in art.

Starting last Tuesday (February 19th), he's been running a streak where he hasn't pooped in his diapers while he was awake. He's been quite motivated by the reward of being able to wear special "Cars"-themed pull-up diapers if he tells us that he has to go potty in time (and subsequently goes). Seems the reward/carrot motivator has trumped basic training methods this time.

We're continuing our now three month tradition of going to my parents' house on Thursday and swimming at a local community centre for about forty-five minutes to an hour. Both kids seem to enjoy it a lot (so long as the wading pool is warm) and Daigoro in particular has advanced a long way towards being more confident in the water.

More to follow... I've just run out of steam on this entry for now.

Wagging Tongues

This past weekend (August 25-26), Kenshin has started to babble. He's previously been making noises; cooing and gurgling and squawking, but hasn't been stringing them together into a sequence of connected sounds. Now he's "bah-bah-bah"-ing and "goo-goo-goo"-ing with the best of them.

It was funny to observe him work up to this level. On Wednesday and Thursday of last week, I noticed that he was working his jaw open and shut in a sort of silent version of babbling - not making any noise. At the time I commented to Marli that it'd be funny to just overdub a video of him with some sort of voice track.

Then, after three days or so of this, he connected the idea of opening and closing his mouth with making sound at the same time and voilà, he had made the leap to babbling.

At the same time, in the past three weeks while we were on vacation and the week since, he's steadily improved his ability to push up and roll over, to the point that we have to be careful of putting him down on couches and chairs without a healthy padding of pillows to prevent him rolling off and onto the floor.

He's developed a cute habit which will probably pass quite quickly; he occasionally sticks his tongue (a tiny, pointed red-pink flag tip) out one side of his mouth or the other. It's almost too cute, but the fact that he's doing it without prompting or self-consciousness keeps it from slipping into the saccharine.

On the Daigoro front, he's still testing the limits of saying no to various commands, suggestions or requests. It can be wearisome at times, to say the least, and I feel for Marli for having to deal with him all day long. Fortunately these episodes are not so frequent as to make dealing with him a constant chore.

We've been able to "upgrade" his sleeping arrangements into a small cot without much fuss. He rolls about quite a bit at night, so we didn't want to put him into a full size bed yet for fear of the dreaded "thunk" in the middle of the night (as has happened once or twice when he's been left to sleep in full-size beds. Marli made the observation (and I agree) that it's curious that Daigoro hasn't formed strong attachments to single objects or routines. He doesn't really have a favourite toy or stuffed animal; he didn't protest at all when we stopped putting him in the crib and started him sleeping in the cot; he doesn't seem to bat an eye when our routine is shifted slightly or we do something out of the ordinary. In one sense I am grateful, in another I wonder if there is something to the idea of children having strong attachments. I guess he would make a good Buddhist. Well, in this one sense, anyway.

While on vacation, my in-laws made helpful suggestions about higher levels of discipline and obedience. Though I feel we've made a good effort along these lines, I admit that we can do better. In the larger spectrum, I know that Daigoro is actually quite a bit better in terms of obedience and temper tantrums than many children, but it's easy to bristle at correction from elders, even if meant with the best of intentions. So, I think Marli and I will be working a little harder on the concept of obedience with Daigoro over the next few months. My in-laws certainly have valuable experience on the subject.

Our efforts at potty training are so far met with sporadic success. He's managed to let us know on a few occasions now, but his successes are far fewer than his accidents. Nothing to worry about yet, of course; just unfortunate that he hasn't gotten the knack of yet, considering how well he seems to catch onto other activities.

Daigoro's dietary preferences have narrowed to an even thinner range of carbs and sweets, a development which does not please us. There are nights when he eats quite well, on many others he is getting a less than optimal balance. We are spending some time and discipline on this - future health depends a lot on his learned habits now.

The stresses of childcare continue to put strains on the time Marli and I spend together. Fortunately we are learning to adapt both our activities and our expectations and I am thankful for a partner who is willing to discuss issues before they become deep-rooted problems.

We took the children to visit my sister this weekend - she lives in a very nice apartment building with a penthouse level swimming pool. Both Daigoro and Kenshin seemed to enjoy their time in the water, though Daigoro is still reluctant about floating and kicking, preferring instead to be passed from one adult to another.

There are a number of stories from our vacation on Manitoulin Island that I should also relate, many of them very fond memories, but I should sign off for now and save them for another entry.

Smiley Face

Kenshin is now smiling quite frequently. He lights up with happiness when he's feeling sociable. It's quite a sight. He continues to grow like a weed and is now big enough (at two months) to fit into 3-6 month clothing. Like a typical breast-fed baby, he has rolls upon rolls of fat. My mother says that my brother was once nicknamed "Bud" for his resemblance to the common Chinese and Japanese depiction of a laughing, obese incarnation of Buddha . Our not-so-little Kenshin seems to be following in his Uncle's footsteps. We occasionally call Kenshin "Pudge" for similar reasons.

Daigoro voluntarily used his potty yesterday for the very first time. We've been using a "wetting" doll (complete with potty) as an example for a few weeks now. He's been playing with the young three-year boy that I mentioned we met in the park and seems to have been inspired to trying going potty on his own. The three-year old (I'll develop an alias for him if it looks like he'll be a frequent playmate, as he seems to be becoming) appears to be a good influence on Daigoro, and vice versa.

He also seems to developed a taste for asparagus (Daigoro: " 'spargus"), which is great for nutrition but bad for diaper smell. If you haven't eaten asparagus recently (or not at all, or if you're not genetically pre-disposed), you're not likely to know what I mean, but I assure you, it's pungent.

Curiously, he also likes peas and brocolli, but is not a big fan of carrots, green beans, peppers or many other common vegetables. I don't know if this is some odd trend for him to like foods that children traditionally hate. Perhaps I should serve him some Brussel sprouts.