Rebooting... again... and again.

So... it's been almost four years since I posted. No excuses. Just life.

Daigoro and Kenshin have been making steady progress. It'd be impossible to try to go back and document it all. I'll try to make some manner of summary post in future.

Right now, I just want to record the fact that Kenshin took a regular burrito and added onions and black beans, two things he's never added to a burrito before. Onions especially he usually doesn't eat.

This is all part of Taco Tuesday, something that has become a regular event in the household for the past two years. Today it's beef burritos. Another evening it might be chicken tacos, or pork tacos... whatever. The point is he's trying out something completely new for him in a food. Which as anyone with a child who is on the spectrum will tell you, is a Big Deal.

Kenshin has been making amazing progress, and I regret not noting all the little steps. But here's one I can record. I intend to record more.

Different not Less (?)

Last night Marli and I watched Temple Grandin, an HBO movie about the eponymous real life person, Temple Grandin (wiki link) . I confess I wouldn't have rented this movie on my own because I generally find made-for-TV biographies (and movie biographies in general) to be overblown (dramatic where they need not be dramatic, and wrong where they should be accurate). What bothers me is that these sorts of movies take a story which is potentially already inspiring on its own, and take it into glurge territory by making everything into a hyper-real, one-vs.-all, "nobody helped me" story of personal triumph. It's rare that you get a biography that "feels real", and this is all too often confirmed when one reads into the actual history behind what is portrayed. It's like a war story where the original story is amazing enough already, but screenwriters have to add a love story, add four superfluous characters who get killed unnecessarily, make three important historical people into one "composite character" and then change some of the plot so that it makes less (or no) sense from a historical viewpoint. Oh, and change the nationality of some or all of the people in uniform. [*cough* (U-571) *cough*]

You know, minor editing like that.

Temple Grandin (the movie), to its credit, generally steers away from this sort of hyperbole (mostly). It did make me want to purchase the book to get a better sense of her thought processes and individual challenges away from the screenwriter's (and producers') need to make everything into a drama.

In a nutshell, Temple Grandin (the person) is a woman with autism who uses her particular way of looking at things (she used it as the title of her book "Thinking in Pictures") - as a springboard to an education (and later career) in Animal Science and autism advocacy. To explain much more would spoil some of the more interesting twists and turns of the movie.

It's well acted, and Claire Danes, playing Temple, seems to nail a lot of the mannerisms and "looks" that I've seen Kenshin do. In particular, one scene in which she has a bit of a breakdown over not understanding social cues during a society party, she covered her face with her hands with palms out and interlocked thumbs in front of his nose exactly the way Kenshin does when he's particularly upset. Danes definitely had the "chops" for this role.

The story is definitely quite inspiring while at the same time bittersweet. I can envision Kenshin having to endure much of the same prejudice and misunderstanding that Temple went through as an autistic person who otherwise appears quite normal. I also look forward to encouraging Kenshin to use whatever gifts or strengths he has now or manifests later. I'm very glad that Marli coaxed me into watching it. I'm going to recommend it to others, especially in my family.

That said, I think there are problems with it.

Not to say that it is bad, or the problem is IN the movie itself, but for me it is the expectations that it raises. Temple Grandin is a high-functioning autistic person with an exceptional gift of insight and intelligence. Her way of "thinking in pictures" while not uncommon in autistic individuals, is exceptional because she has learned to articulate and put it into action in engineering applications as well as her psychological research and lecturing.

Even in my very limited exposure to people with autism and understanding of it through reading and research, many, many people with autism (I do not have the numbers back up a statement to say "most" or "a large majority", but I do suspect it is the case) won't have this particular "presentation". Many are bright. Many have unique ways of looking at things and can express that somehow (through writing, speech or drawing) to non-autistic people. Not all of them have both characteristics.

There is a trend now, generally in society, but increasingly in biopics like this, that all persons with disabilities have this or the other barrier/disability/impairment - whatever - which sets them up as an outsider in "normal" society but they invariably have this other ability (frequently so remarkable so as to seem superhuman) which outshines the disability and helps them to earn the respect and admiration of others - showing the "normals" that they are as good or better than the rest.

"Forrest Gump" overcomes physical handicap and mental disability and lives a remarkable, event-filled life (earning the Medal of Honour, no less). John Nash uses his unique viewpoint to earn a Nobel Prize, sidestepping delusions and paranoid schizophrenia along the way, in "A Beautiful Mind". David Helfgott, played by Geoffrey Rush in "Shine", puts aside his mental illness (schizoaffective disorder) to win accolades as a concert pianist (quite aside from the ongoing difficulties of the real life David Helfgott). Raymond Babbit is the "Rain Man" with remarkable powers of recall and mathematics who manages to humanize his selfish brother and win a lot of money through gambling as a bonus.

What worries me about these movies and the popular Hollywood portrayal of mental illness, developmental challenges and disorders like autism is that they show the "minus" column - the challenges, the prejudices, the sensation of being outcast, but there's always a huge "plus" on the other side of the equation - Forrest Gump's tremendous courage, heart and remarkable running ability, John Nash's mathematical "beautiful mind", David Helfgott's piano-playing, Raymond Babbitt's card counting and instant recall. Somehow they're all "savants". They all have superpowers!

Rarely does one see a screen character for whom the equation of their abilities and disabilities are equal... or, heaven forfend, leave them less capable than a person without a disorder.

The wiki article I just linked to about Savants quotes a study by Dr. Darold A. Treffert who indicates that 1 in 10 individuals with autism may exhibit "remarkable abilities in varying degrees". Yes, that's amazing and it should be celebrated... but there's 9 other individuals who aren't Savants. Where are the movies about them? Should it be necessary that all parents of autistic children have to patiently explain to well-meaning strangers that, no, their son/daughter does not have eidetic memory, the ability to see numbers and equations floating in the air and connect them with glowing lines, or play grand pianos with the fingers of a maestro? What about the autistic kids who can't walk down a hallway without bumping into people, or can't read social/visual cues at a birthday party in other kids' faces, or don't know enough to not run into a street if they're having a tantrum about something?

I'm exaggerating a little here, of course. Most people don't have an inkling of what autism is past a single viewing of Rain Man (if that). But so many movies about people with disabilities portray them as paragons of virtue (or, occasionally, embodiments of vice) with these strange, superhuman abilities that I worry that people like Kenshin will never be viewed as people - with strengths and weakness like everyone else - and that they may not have enhanced senses or tremendous gifts. They can just be ordinary (with the "asterisk" of their mental or physical illness or disorder). Do they need the "asterisk"? I don't know. I think so, at this point in my life.

Anyhow, that's a long-winded way of me ranting about the portrayal of disabilities in Hollywood. I don't want anyone to take the idea that people with disabilities/disorders/illnesses shouldn't be portrayed, or should always be venal or self-pitying individuals. They should be real, fully-three dimensional characters with all the good and the evil that implies.

Temple Grandin is/was remarkable. She's a hero and a figure of hope for many. As I look at the potential I see in Kenshin, I'll keep her in mind. "Different, not less" is a good starting point... I would temper that naked optimism with "Different, not less of a person." They may have a lesser ability to read social cues, regulate their behaviour, and establish communications. They MAY have abilities which are better, in their own way. They may not.

That all depends on the individual. Kenshin is very much an individual, and I'm going to treat him as one. I'm not going to expect Savant abilities, but I'm not going to dismiss evidence of them either.

He may be completely ordinary, aside from the autism. Or he may become a world-leading expert on Robotics for all I know, because of his fascination with Wall-E and electronics. I'll be there to help him, if that's what he wants and he's able. Temple Grandin, eat your heart out.

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.