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.
