Wednesday, June 13, 2012
He Tried... to... trick... me (Vignette)
Well, that at least exhibits a sense of self and awareness of other... I guess.
Friday, March 09, 2012
Love Notes
Tonight I found one of those notes in Daigoro's lunchbag.
On it, I had written. "I love you! - Daddy".
He had written back, in his still developing but very cute handwriting, "I love you too."
Thursday, February 16, 2012
Kenshin's Particular Flavour of Autism
For convenience, I'll just follow along with the wikipedia article on Autism using the characteristics it describes. I'll then compare his "flavour" of autism with the new redefinition of Autistic Disorder.
His speech was delayed and he had only begun rudimentary speech at 18 months. Kenshin began to exhibit signs of noticeable developmental delay at age two. Walking was somewhat delayed, but within "norms" for boys.
Social Development
Aside from speech delays, we noticed that Kenshin did not typically register social greetings (hello, goodbye, how are you) and would not generally wave. He would only infrequently make eye contact. This is apparently typical for many autistic children. Although he went through a period of "screaming", this was not typically a tantrum in the commonly understood sense - in that he was reacting to not getting something he wanted, but he would scream when something he didn't like (certain foods, foods with sauce on them) was placed too close. Asking for things and looking someone in the eye while doing so is difficult for him. He will generally take an object if available without asking. This is problematic when trying to play with other children.
He was (and is) generally a "fearless" kid - he doesn't seem to mind wandering off from us (the parents) or other caregivers - he exhibits less need for attachment than peers his age.
Turn taking is also a problem, though he is slowly learning how that works through repetition and reinforcement.
He does not appear to be lonely; generally he seems quite happy to play independently, but I have noticed a preference to play in the vicinity of other children or adults. He will come into the room, situate himself within 1.5-3 metres, and then play on his own. If you move, he will tend to move to maintain that distance - close enough to be aware of your presence, but far enough not to be playing together. He will ask us as parents to accompany him to a different room while he plays, not necessarily to play with him, although he will now phrase it as "playing with me".
As he has grown, he has begun to seek out more interaction with other children, often by "clowning" or chasing. Interactive play is possible but usually only with prompting. He is beginning to interact more spontaneously with playmates, but progress is slow.
He is generally not aggressive at all; in fact I would characterize him as being a pretty peaceful child with a fairly even temper.
All of these aspects of social behaviour are fairly typical for autistic children of Kenshin's age.
Communications
As mentioned above, Kenshin was delayed in developing speech, and is probably currently speaking at a 2.5 to 3 year-old level (he is currently four and a half). As noted on this blog, development was very slow, with occasional bursts of advancement. We have noticed he has particular difficulty processing questions like "Why are you sad?" or "Why did you take that?" and also reverses pronouns (yours/mine, me/you), especially in questions or situations which deal with concepts of self. Joint attention is problematic, but not as much as it seems to be with some children, and inability to point or misunderstanding pointing is not as pronounced as would seem to be typical with other autistic children; he will generally understand what you mean when you point to something, though he will seldom indicate things by pointing himself.
I have noticed that he will repeat others' words or his own words in situations where he doesn't seem to understand what is being asked of him. This echolalia is most easily replicated by asking him a complicated "why" question; for example, "Why did you throw the jar of jam down the stairs?" - he will say in answer: "I throw the jar of jam down the stairs." On other occasions, he seems to be repeating words quietly to himself (sotto voce) for the pleasure of hearing the words again, or to reinforce something he has heard - not in response to a question or a situation, but because he wants to say the words to himself.
For example: He will be sitting in bed, quietly, and he will say, apropos of nothing, "Rainbow fish gives his tail," very quietly to himself. A few minutes later he will say the same thing. Marli and I jokingly refer to this as the "creepy movie kid voice". Fortunately he doesn't say things like, "When Mars is ascendant in the house of Ares, my unholy father will come to destroy the world," or else it would be a little too creepy.
In most respects his communications are typical for an autistic child, with the exceptions as noted above.
Behaviour
If there is one category that I would say Kenshin is most atypical for an autistic child, it is behaviour.
He does not engage in stereotypy - repetitive movement "such as hand flapping, making sounds, head rolling, or body rocking." There are one or two hand configurations, flexing his index finger underneath the tip of his middle finger and splaying out the little finger - looking a little like a an Buddhist mudra, which I have seem him do when he is somewhat anxious about something or wants something.
There is little compulsive behaviour - he does not line things up in a specific pattern, or stack things or make sure things are done in a specific order. Our developmental specialist did note that there is an aspect of clinical "compulsion" to his behaviour, but it is atypical in its manifestation.
He does not require sameness - we can switch up his daily routine or the positions of objects in the house with zero complaint from him. He does tend to resist being interrupted at times, but only slightly more so than I would expect from a neurotypical child.
I have only observed a few rituals - when I drop him off in the morning, after he takes off his coat and boots, he will invariably say "hug" (give me a hug) then say, "then a kiss," (and give me a kiss) and then say, "aaaand done," then walking determinedly (and without looking back) to join his peer group. However if we cannot perform this ritual or it is interrupted, it does not seem to phase him. I haven't seen many other rituals - perhaps Marli will chime in with some.
Restricted behaviour he has in spades. He only wants to play on the iPad or one of our game systems (PS3 or Gamecube), or on the computer. He will ask for it repeatedly, from the moment he gets up until he goes to bed. We allow him approximately 30 minutes per day. He would play all day, given the chance. This is one of the more worrisome (and stressful), not to mention socially embarassing behaviours he exhibits. It gives us the appearance of absentee parents, content to let him know nothing other than video games.
He does not self-injure to any extreme degree, though I have seen him bonk his head on walls as a joke for his brother or to act the clown.
Other Symptoms
Kenshin is sensitive to bright light or loud sounds, but actually doesn't mind bright light once established (in fact, he will sometimes become agitated if we turn off a light in a brightly lit room when there are two light sources on). Sudden loud noises seem to startle him, and he will turn down a TV if he finds it too loud. We have had his hearing tested and he is well within norms (in some frequencies, better than normal) for his age group.
He used to show poor coordination and muscle tone, but as he plays more often in parks and runs, this awkwardness is less pronounced. He's actually quite nimble on monkey bars and climbing equipment, and aided by his obliviousness to injury or danger, he seems quite proficient where some neurotypical children would balk or otherwise perform poorly.
Kenshin dislikes certain sauces, mixtures and presentations of foods. For example he will not eat hamburgers or hotdogs with anything on them - even the slightest appearance of ketchup or mustard will elicit complaint or, if there is a lot of sauce, tears. He seems to love Kraft dinner macaroni and cheese, which has a sauce component which doesn't bother him, but he balks at homemade macaroni and cheese, which is apparently "too saucy". Curiously, he is fine with pasta and meat sauce/ragus, despite its saucy nature. If he sees Daigoro with a burger or hotdog with sauce, he will immediately say "I don't want sauce on mine."
He used to be dead-set against vegetables, but he is much more accepting now. He loves rice (he will wolf it down) and most meat.
A common complaint, when he doesn't like the food, is "I want plain food." Marli and I believe this is a reaction to flavours and textures which may be too intense for him. Strangely he seems more tolerant of "spice" - spciy hot - than other kids. I've seen him eat some spicy chips and other salty snacks which I would have assumed would send him screaming for water, but he simply sits and munches away happily. I don't know how to reconcile this with his sensitity to other common spices like basil or oregano. For example, he recently ate a number of cinnamon hearts happily, while his brother was fanning his mouth and asking for water after eating two.
We have progressed to the point where he can eat a relatively nutritious meal, though I would still prefer more variety and less salty, pre-prepared foods.
He definitely has no appetite problems - presented with food he likes, he will eat voraciously. I am not aware of gastrointestinal issues.
Amusingly/ironically Kenshin never really ran around on his toes (apparently one common indicator), but Daigoro did.
Some children with autism have sensitivity in varying degrees to being touched. To my everlasting relief, Kenshin is a huggy, touchy-feely kid who doesn't mind being touched or hugged.
The proposed new AMA definition of Autistic Disorder:
Autistic Disorder
A. A total of six (or more) items from (1). (2), and (3). with at least two from (1) and one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression. body postures, and gestures to regulate social interaction
b) failure to develop peer relationships appropriate to developmental level
c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing or pointing out objects of interest)
d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following
a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
c) stereotyped and repetitive use of language or idiosyncratic language.
d) lack of varied, spontaneous make-believe play or social interactive play
(3) Restrictive repetitive and stereotyped patterns of behavior, interests, and activities as manifested by at least one of the following:
a) encompassing preoccupation with one or more stereotyped andrestricted patterns of interest that is abnormal either in intensity or focus
b) apparently inflexible adherence to specific, nonfunctional routines or rituals
c) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting or complex whole body movements)
d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one ofthe following areas. with onset prior to three years (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
So, in looking at these in order:
Section A:
1 a) applies
1 b) applies
1 c) partially applies
1 d) applies
2 a) applies
2 b) applies
2 c) applies to some extent
2 d) applies
3 a) applies
3 b) does not apply
3 c) does not apply
3 d) does not apply
Section B:
All three categories apply.
Section C:
Rett's Disorder or Childhood Disintegrative Disorder does not seem to account for the disturbance.
So, even by the new AMA definition, Kenshin could be classified as having austistic disorder.
Different not Less (?)
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.
Wednesday, January 25, 2012
Sursum Corda
She mentioned that the Killilea family named their house "Sursum Corda", which is Latin for "Lift up your hearts".
I think it a terrific and heartening coincidence that one of my favourite quotes from Prime Minister Winston Churchill (who was in turn paraphrasing the Bible) is an excerpt from his June, 1941 address to the Allied Delegates:
Lift up your hearts, all will come right. Out of depths of sorrow and sacrifice will be born again the glory of mankind.How's that for a propos?Winston Churchill
Now, I'm not comparing being in the middle class with a decent income and two healthy boys (albeit one with autism) to facing the possibility of all free peoples being conquered by Fascism, but beautifully crafted words with an inspirational message sure can come in handy at times.
Here's a fun version of it set to a catchy beat:
Listen to the rhythm of his words. Amazing.
Tuesday, January 24, 2012
BAD: Potty Humour - GOOD: Writing Down What He Wants
Kenshin is appending "poop" or the adjective "poopy" to everything. He thinks this is hilarious.
We tell him that "potty words" are not acceptable and punish him (verbal chastisment, corner, room, in that order) but it only seems to encourage him.
I'm thinking it's some manner of attention-getting thing and it's annoying because he definitely knows better. I'm mostly embarrassed that he might be influencing other kids at school or in daycare.
GOOD
Marli was surprised by Kenshin walking up to her and giving her his light up sketch-pad, on which he had written:
Mom
I
want to
TV
please
The words were a little misshapen, but quite legible. Marli was so impressed that she went to get the camera to record the "sentence" but by the time she returned with the camera he had erased it.
This isn't a communications breakthrough - he can ask for things quite clearly (and does, frequently) already, but it's pretty amazing, all things considered. There was much hugging and positive reinforcement. At least until he abruptly erased the words.
Oh well, next time.
Monday, January 23, 2012
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 KĂ¼bler-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.
Thursday, March 31, 2011
Opening Moves
For the record, I am not a great strategic thinker. I do think that I am a very good tactical thinker. Tactical thinking, while not a obstacle in chess, will almost always lose to strategic thinking.
Daigoro at this point is about six years old. He is asking to play chess. We're happy to oblige, of course, but we have to walk the fine line of presenting a challenge and not putting him off games altogether. Marli has adopted her father's strategy of never playing sub-optimally for a child's benefit. Unfortunately, this has the effect of putting Daigoro on one heck of a losing streak.
I've made clear to Daigoro that I'm willing to play at a variety of difficulty levels, like the difficulty levels in video games. Marli takes a different tack. As long as Daigoro continues to enjoy chess, I'm happy with either approach.
Wednesday, March 23, 2011
Catching Up...
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.
Tuesday, February 16, 2010
It was SOOooo funny...
We visited the " 'Chans" this weekend. They have a large exercise ball, about 700mm in diameter. The kids love playing with it - bouncing on it, rolling it around, running at it and bouncing off... you get the drift. I've never been a skater, really. I can stand up and make decent speed (for a newbie) but I can't stop except by a very shaky snowplow or what I call the "rapid deceleration by collision" method.
Anyway, at one point I heard gales of laughter from the other room - Daigoro was having an absolute blast with Kenshin. Daigoro came in completely out of breath. When he had recovered somewhat, I asked him what was so funny.
He replied, "I was bouncing the ball and den [sic] I rolled the ball at Kenshin and he bounced off it and den he fell down and the ball rolled on him and den I was laughing so hard even my germs were laughing."
That's descriptive gold right there.
I love to hear children laugh. I've said it elsewhere in this blog and I'm sure I'll say it again. Innocent, unforced, devoid of pretence or malice - it is a balm for my heart in troubling times.
Tuesday, February 02, 2010
Milestones
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.
Monday, October 26, 2009
Brothers
For quite some time now (a few months at least), Kenshin has been able to point at Daigoro when asked "Where's Daigoro", but he's never actually called him "Daigoro".
Yesterday and today he's been calling him Daigoro.
Also, another milestone for Kenshin - on Saturday we left the children with their ba-chan and gi-chan for the day. When we arrived at the door Saturday evening, he said quite clearly, looking from one to the other of us, "Hi Daddy, hi mummy."
Once again, pretty run-of-the-mill for most parents of two and a half-year-olds, fairly substantial progress for Kenshin.
Wednesday, September 30, 2009
Ts-icken Little
Added recently:
"I would like..."
"...milk."
"...water."
"...noodles." (President's Choice White Cheddar Macaroni seems to be his favourite meal at the moment. That kid can pack the stuff away like there's no tomorrow.
"Don't want." (pretty much the answer to anything that isn't meat of some kind or PC white cheddar macaroni)
He's learned his colours and the first five numbers with a great deal of help from nightly sessions with Fisher-Price board books. His pronunciation of the word "pink" is darling.
He also likes to watch the small chickens in the child-friendly faming-based video game "Harvest Moon" and say "chicken in" or "chicken out" (of the henhouse). Only when he says it, it comes out "ts-icken in" "ts-icken owwt".
Daigoro began half-days of kindergarten, although as mentioned below, it wasn't really the same jarring transition it might have been, since he was already spending part of the day with the kindergarten class in his daycare class. He continues to be a gentle, loving and very considerate young boy, if a little spazzy at times. He surprised me the other day with a question about stars and falling stars, asking if the far away stars are suns, and if they are suns, how could you catch a falling star? I suppose he had heard or seen something which had involved catching a falling star.
Two weeks ago was my brother's wedding, which was an absolutely fabulous affair. Daigoro looked handsome beside his father the groomsman and his uncle the groom in the wedding party as the ring bearer. I'm not sure what is quite so adorable about children dressed up in formal wear or uniforms, but it sure is cute.
There's all sorts of other things about Kenshin's progress which I probably should document, but it's all happening so fast it's hard to keep track. I'll have to ask Marli for some input. More later.
Wednesday, September 09, 2009
Breakneck Acceleration into Speech Country
Somehow, for whatever reason, the spoken word switch seems to have suddenly flicked on for Kenshin. He's now actively asking use to "read book" (or even more impressively "read Sandra Boynton"), "I think I want to watch [Wall-E, Bolt, I Spy]" and dozens of other sentence fragments and individual words. He says "look, plane!" or "look, noodle!" appropriately when pointing at those respective objects.
This really must sound like "yeah, so what?" territory for many parents of 30 month old kids, but for Kenshin to be speaking at this level (~24 months) is a big leap forward in a very short amount of time. For the past six months previous to this latest development spurt, Kenshin had been speaking around a year-old level, well behind his age. Fortunately, as mentioned in previous posts, developmental assessment indicated that he wasn't too far behind in other aspects.
He's beginning to talk without prompting, excitedly describing things he wants or has seen. This, paired with his increasing comprehension of our commands to him ("come upstairs", "let's brush your teeth", "time to change diaper", etc.) has made it a little easier to deal with him.
Strangely, as I say this, he's actually not generally troublesome in the sense that he's actively causing mischief - it's just that due to his slow comprehension of verbal commands, he's generally indifferent or ignorant of what we want him to do, which makes him seem very uncontrollable except by pulling him about or physically sitting him where he needs to be (on the couch, in his chair, in bed, and so on). He's not drawing on walls because he wants attention - he just doesn't know any better.
Daigoro, by contrast, was speaking fairly clearly at this point in his development, albeit still in sentence fragments.
We took them to African Lion Safari this past Labour Day weekend. Surprisingly better than I was expecting, though I have to say I thought the kids would be more interested in animals roaming just outside the car windows than they ended up being. Kenshin in particular was more interested in his toys than the baby zebra frolicking about four feet away.
Daigoro and I had an interesting duel of wills a month or two back - I need to document that, but not tonight. Just wanted to get a record in while I had a spare moment.
[edit] OK, I have a spare moment.
I was instructing Daigoro to do something - what exactly I can't remember.
I was getting frustrated and I said, "Daigoro, it makes me very angry when you don't listen to me. Please do what I say."
To which Daigoro replied, "Why do I have to do what you want when you don't listen to what I want?"
I replied (in a somewhat taken aback manner), "Daigoro, children have to to what their parents want so that they stay safe and learn from what their parents know. Sometimes children don't know the right things to do yet."
That seemed to fly, but I have to say I wasn't expecting the teenage rebellion angle for at least another eight years.
Tuesday, May 19, 2009
Identity Crisis
After visiting relatives in Montréal and Ottawa, I can say that we're definitely getting better at the packing and planning aspects of our trips, though maintaining car tidiness and packing cohesion over the weekend is not yet optimal.
Both of us are big believers in not resorting to DVD players and other digital distractions, preferring to try to interact with the children in song, conversation and sight-seeing. One such conversation had a particularly humourous twist.
Marli and I were discussing the family history of my Japanese-Canadian roots when Daigoro jumped in with his frequently-asked question, "Excuse me, what are you guys talking about?"
Marli patiently (and very concisely) explained the concept of identity. She talked about how people talk about appearance, culture and other aspects of one's background as making up one's identity. She finished by asking, "So, what things identify you and our family?"
Daigoro thought for a while, then answered, "Daigoro is fast. Daddy is strong. Mommy is safe. Kenshin is screamy."
Thursday, May 07, 2009
Lasts
Fortunately the specialist indicated he seems to be developing mentally, physically and socially the way that a two-year old should, just that his linguistic development is about a year behind.
On the happier side of things, he has developed a veritable obsession for having books read to him - he will press a book into our hands, listen beaming while we read it, then demand a second, third and fourth reading. It's quite endearing - he will smile and giggle at the book content and look positively radiant with joy.
He is progressing slowly. Besides his early words of "Mom", "Up", "Bye" and "No", he's added "outside" (ow-syyy), "ball" (baaah) "yay" and a few other words to his lexicon. You can see the wheels turning in there. He will spend literally an hour or more positioning and repositioning trains on his Brio-compatible tracks and toys, and laying out the track in various patterns. He's actually figured out polarity on the magnets on the trains, knowing to flip them around when they're repelling each other. He also engages with all manner of buttons and switches at every opportunity. At least once or twice he has managed to turn on, off or otherwise reconfigure equipment that I wouldn't have credited him with being able to figure out.
Daigoro continues to astound me with his ready grasp of difficult concepts and excellent recall of things I've often only spoken to him briefly about. He progresses very well in his drawing and writing skills as well as displaying a well-developed sense of empathy and care.
Marli has weaned Kenshin down to a single morning feeding per day, which brings me to the title of this entry - the idea of a last feeding. Often we note firsts - teeth, walking, word, etc. - but we seldom take note of a "last". Kenshin is very likely our last child and Marli will consequently likely never breast-feed again. At some point in the next three to six months will be the last time that Kenshin will have breast milk, Marli the opportunity to feed Kenshin breast milk, and I to see the two of them share such an intimate and serene moment. Similarly, once Kenshin starts to speak, it will be the last of baby-talk, and eventually the last of the loping, lop-sided toddler run, the utterly unfiltered laughter and soon enough, the last time I'll be able to bundle either of them up in my arms, cradled like an infant.
Last week I took the children to see cherry blossoms in High Park. It is a nation-wide phenomenon in Japan to go sakura hanami (cherry flower-viewing) - besides being an excellent excuse to get sozzled and write maudlin poetry, it has a much deeper sense of bittersweet awareness of the temporary nature of natural beauty. They even have words for it: mono no aware - the poignancy of things. As I watched my pre-schooler and toddler run beneath the gently falling cherry petals, I felt it deeply within my heart that these are moments which will never come again, and yet they are nonetheless happy and beautiful. This, I think, is the deepest wisdom that one can try to grasp - that even though all things will pass and come to dust, there is no need for despair and ennui in the world.
Gleaming petals fall
Dying light of a spring day
Children run, laughing.
Monday, February 09, 2009
Firsts - Writing His Own Name
Daigoro seemed to think this was a very equitable exchange.
We've also managed to arrange a few playdates with local children of Daigoro's age, which helps to quell some of my latent fears about him having trouble making friends and seeing them regularly. We haven't yet managed to find a female playmate for him - all of his contacts so far have been boys. I'm not going to worry so much about that yet - even at this early age, there are marked differences in how boys and girls play.
Saturday, January 31, 2009
Interesting Quotations
"No, I'm being problematic. I want pop."
Given bacon, Daigoro asked if Marli could remove the fat. He added,
"I'm a vegetarian for fat."
Monday, January 19, 2009
Treasured Moments
Daigoro still speaks quite well and continues to show remarkable powers of observation daily. He's going through some odd phases of on-and-off separation anxiety at pre-school - probably arising from the long Christmas break.
Last night, after we put the kids down, Kenshin was crying and not wanting to go to sleep. We decided to wait and see what happened for a few minutes before we intervened. Our bedroom shares a wall with the kids' room and we can often hear what's going on.
We were laying in our bed, when I heard Daigoro start to sing to Kenshin in a soft, gentle voice. I couldn't quite make out the words, and the tune was unfamiliar, but Daigoro was definitely trying to comfort Kenshin with song. It was very, very sweet. About two minutes later, Daigoro stopped singing and sweet, blissful silence fell upon the house.
On the other end of the sweetness spectrum (what I like to term the "razza-frazza kids" end), the children are generally safe enough to be left for a minute or two without someone watching them like a hawk (enough time for me to go to the washroom, or go downstairs for something, etc.), but this little vignette was an exception.
The weekend before last, I was looking after the kids. Marli was in the house but didn't have responsibility for them at that moment (we usually verbally "hand off" the kids to one another a la pilot-in-command transfers on aircraft - a habit which generally avoids the "I thought YOU were looking after them" arguments). I had to go upstairs for something. Marli was already upstairs - I think Daigoro was with her. I figured, "I'll be upstairs for a few moments," what kind of trouble can Kenshin get into?
Heh.
I run upstairs, get the thing that I need, am coming down the stairs and see Kenshin there at the bottom of the stairs with a jar of jam hoisted over his head and about to throw it on the hard ceramic tile floor of our front hall, looking for all the world like some sort of bizarre toddler variant of Charleton Heston playing Moses in the Ten Commandments about to dash the stone tablets down the side of Mount Sinai.
I vault down the last few steps and grab the jam jar out of his hands just as he's about to throw it.
Frickin' jam? Why does a kid want to throw a jam jar around!? JAM!
Razza-frazza kids.
Sunday, December 07, 2008
Lawn Shovelling
So tonight he got to stay with his ba-chan and gi-chan and shovel snow to his heart's content. He shovelled the walkway, the driveway and, in a little bit of overzealousness, started to shovel my parents' lawn as well.
Kenshin is experiencing something which is disrupting his sleep and making him wake up in the night again. Judging by the redness in his cheeks and his running nose, we're thinking its something to do with his teeth again (apple-red cheeks and runny noses seem to herald teething quite clearly for Kenshin). He's also developed a scaly, reddish rash on his calves and thighs which appear to be eczema, though we're not entirely sure.
Yesterday Daigoro was thrown into fits of laughter when he started putting on my battered brown fedora and Marli and my mom would say, "hey, it's daddy," and then when he took it off again they'd say, "oh, it's Daigoro again." Later, he found my father's slippers and they'd say, "oh, now it's gi-chan!" He thought this was hilarious, but when he put on both the slippers and the fedora, the women would say, "oh no, now we don't know who it is - is it daddy or gi-chan?"
Daigoro thought this was the height of modern comedy and repeated it for about ten minutes.
Kenshin is learning certain verbal cues for things - "a doi doi doi doi" is "I want that."
"Amaaaa." is "here, take this thing which I am giving to you.
"Uh-huh, uh huh!" (accompanied by head-nodding) is "yes, I am doing what I want to be doing," or "yes, I like what I now have in my hands."
"Uh-ohhh," is "something has fallen/broken" or "I think I have done something wrong".
"Nah!" (accompanied by twisting his head and body violently away from a proferred food item) is, of course, "no, I don't want this; how can you possibly think to offer this to me?"
He also seems to be increasingly happy to interact with Daigoro - the two of them thumping around the house chasing each other while laughing delightedly is a great joy for me.
Daigoro has been a bit of trouble lately at suppertime. He's become more and more squirmy and fidgety at meals, which obviously reduces the amount of food we manage to get into him. Today we reached the limit of our tolerance and buckled him into his booster with the warning that we will now buckle him in every time he squirms and does not sit properly in his seat. We'll see how effectively this solves this problem, if at all.