Faith is a bird
that feels
dawn
breaking
dawn
breaking
and
sings
while it is still dark
Scandinavian saying
Wednesday, September 29, 2010
Monday, September 20, 2010
Co-morbid
Madelyn enters the crowded reception area with deceptive stealth and purpose. All of a sudden she is right next to me, a request spilling into the space between us. A small beautiful child hugs her leg; she rests her hand on his little round head. Her other hand touches my arm. We meet each other's eyes.
In a voice barely above a whisper, yet absolutely discernible, she tells me the name of the little boy. Dominic, her next to youngest son. He is at camp for the first time. Her eldest son has been coming for several years and she is ready to entrust me with this one. She has an even younger one at home who is likely going to be a future camper, but it is to the eldest boy that our attention now turns.
Might you ask the student who will be working with Daniel to accompany me to the car and invite him to come in? Madelyn asks this as if it were the most mundane of requests. Her decision to bring in Dominic without Daniel lets me know that a serious negotiation has already failed and that she will not allow herself the luxury of annoyance or disappointment. Daniel is the priority. His anxiety and pride blend to create this present situation, one where he will not be able to give in and so will be forced into a default position of depriving himself rather than capitulate. It is a cycle with Daniel and one that he cannot break out of on his own accord. His autism and his anxiety combine to complicate simple events, the complication then becoming a spiral in itself, one with seemingly no way out .... this combination of two intertwined disabilities is often referred to as a "co-morbid" condition. Not a word one hears used unless it is to describe someone whose idiosyncracies are a tad too ....idiosyncratic. One does not hear about someone who is co-morbid with shopping and driving, or with headache and nausea, or burgers and fries. No, indeed; some terminology is reserved for the best of us.
Madelyn sees the way out. She sees how she is intertwined in Daniel's spiral and is humble and wise enough to get out of the way. He needs to engage with someone who has not witnessed his being caught in his own web and his accompanying shame. He needs it to be simple, again.
Madelyn knows that she cannot even be a witness to his rescue. She steps back. I admire her. I want to tell her so. Her mothering is a dance of stepping back; like a tango, the dance always begins with a backwards step.
I send my student out. I tell her how casual to be with Daniel. No big deal, he just felt like hanging out in the car so his little brother could have some special attention. Thanks for being such a caring big brother.
Madelyn hands Dominic over to me. I take his little hand and bring him to his group. He is welcomed and fussed over. He smiles and giggles. Madelyn leaves before anyone notices she has gone. Daniel saunters in with his student worker. I give him a glance and a nod. Nice to see you again, buddy, I say.
Nice to be here, he says.
In a voice barely above a whisper, yet absolutely discernible, she tells me the name of the little boy. Dominic, her next to youngest son. He is at camp for the first time. Her eldest son has been coming for several years and she is ready to entrust me with this one. She has an even younger one at home who is likely going to be a future camper, but it is to the eldest boy that our attention now turns.
Might you ask the student who will be working with Daniel to accompany me to the car and invite him to come in? Madelyn asks this as if it were the most mundane of requests. Her decision to bring in Dominic without Daniel lets me know that a serious negotiation has already failed and that she will not allow herself the luxury of annoyance or disappointment. Daniel is the priority. His anxiety and pride blend to create this present situation, one where he will not be able to give in and so will be forced into a default position of depriving himself rather than capitulate. It is a cycle with Daniel and one that he cannot break out of on his own accord. His autism and his anxiety combine to complicate simple events, the complication then becoming a spiral in itself, one with seemingly no way out .... this combination of two intertwined disabilities is often referred to as a "co-morbid" condition. Not a word one hears used unless it is to describe someone whose idiosyncracies are a tad too ....idiosyncratic. One does not hear about someone who is co-morbid with shopping and driving, or with headache and nausea, or burgers and fries. No, indeed; some terminology is reserved for the best of us.
Madelyn sees the way out. She sees how she is intertwined in Daniel's spiral and is humble and wise enough to get out of the way. He needs to engage with someone who has not witnessed his being caught in his own web and his accompanying shame. He needs it to be simple, again.
Madelyn knows that she cannot even be a witness to his rescue. She steps back. I admire her. I want to tell her so. Her mothering is a dance of stepping back; like a tango, the dance always begins with a backwards step.
I send my student out. I tell her how casual to be with Daniel. No big deal, he just felt like hanging out in the car so his little brother could have some special attention. Thanks for being such a caring big brother.
Madelyn hands Dominic over to me. I take his little hand and bring him to his group. He is welcomed and fussed over. He smiles and giggles. Madelyn leaves before anyone notices she has gone. Daniel saunters in with his student worker. I give him a glance and a nod. Nice to see you again, buddy, I say.
Nice to be here, he says.
Friday, September 10, 2010
T.F.B.
John Livingston, a naturalist of some acclaim and author of a wonderful book, Rogue Primate, proposes that there are two characteristics or habits that seem to distinguish animals (who co-exist in communities) from humans (who co-exist in communities), these being rationalization and deceit. Apparently, animals do not engage in these distinctly human behaviours. Why do I include this information here, at the beginning of a post that will take up some recent adventures at autism camp? Well, dear reader, perhaps you might consider it a courtesy, a foretaste of what is to follow, an anticipatory set....I'll leave it to you to draw your own conclusions.
I believe I've already mentioned that the autism camp I so affectionately write about has been in operation for about 15 years. I believe it would also be fair to say that I am a tad protective of my camp and my campers. It's also unfortunately accurate to say that in spite of my (admittedly anal and compulsive) attentiveness to detail and organization, every year something seems to slip through my grasp.This year was no exception. Somewhere in the back of my mind I knew that another camp was going on at the same time as mine, that another HUGE event was also taking place on the campus where I hold the morning half days of my camp and that my camp and the other camp would be sharing space. Somehow, this did not translate into my NOT using a gymnasium space that I had counted on in my schedule rotation. So, when I arrived a little before 8:00 am on the first day of camp after having spent the previous day hauling and setting up equipment for my activity and arrival stations, and encounter the other camp's director and his entourage of camp counsellors assembling outside the entrance doors of MY arrival space, I was unimpressed. You might even say perturbed. Others on the scene used other words as well..... I think I heard one of the entourage use the phrase Total eFfing Bitch (except he didn't use the word eFfing... if you get my drift). The Other Guy and I exchanged mature pleasantries that went something like this:
OG: the building manager was supposed to have told you about our camp
me: he did
OG: so why the surprise
me: i'm not surprised about the camp.... i'm surprised about the space that your camp is using ( i am also getting a bit panicky about the 60 plus autistic camp participants and the 60 students who will be arriving ANY TIME NOW who will NOT have an arrival gym.... not good, not good at all)
OG: i had this space booked already....
me: could you have said anything that could be more unhelpful than that statement?!
OG: ( slack jaw stare)
me: i don't CARE about that.... what are we going to do now? right this moment!!!
OG: ( slack jaw stare)
[pause.... imagine 60 autistic people spread over a large arrival space, say the size of a large gymnasium wall; they can arrive and bring their stuff to a designated spot, it will stay there undisturbed while they can go to the other activity spaces and begin their large equipment activity, or their fine motor activity or their outdoor activity.. following these activities, they can return to that large arrival space and use its spacious bottom half (divided by a sound barrier curtain) to engage in games skills activities. the 60 campers are divided into four groups so that no more than 15 people are in an activity space at a time.... perfect for this population... this is now dismantled by the loss of the second gym to the Other Guy's camp. just thinking about it makes me livid]
me: so, my campers, who always get the shit end of the stick, will have to be the ones to do the adjusting ?! my campers who have meltdowns when a back pack is misplaced by a quarter of an inch will be the ones doing the adjusting?!! [ you can see, i was livid]
OG: ( clenched jaw terror)
OG's barbie doll counsellor [ ok, that's totally unfair, but did i mention i was livid?] : well, if you like you can see the schedule... right over here on the wall [my schedule is also on numerous surfaces, but never mind; the writing is now on the wall as far as i'm concerned]
me: please do not placate me; in fact, it would probably be a good idea not to speak to me at all for at least the next hour or so.... i shall certainly be verbally abusive [ i wondered at the time about the word "placate" .... my therapist tells me that i ought not to wield my intellect like a weapon.still, it was out of my mouth before i could stop myself]
upshot: my camp moved across the hall; we reorganized one space so that three different types of activity could go on in more or less divided and function -specific stations and we got it done in the 15 minutes we had before the campers arrived. i was seething and putting considerable energy into not letting it spill over onto my camp counsellors and certainly not my campers. we get the day going and even though the kids are more agitated than i'd like for what i usually am able to achieve at my camp ( so much unavoidable human noise from all of us sharing one big space for at least three of our activity stations), the day goes reasonably well ( but you can check back to the day one blog and see all the goodies that did happen). we have this arrangement for the next day as well, and then have a big trip to a theme park on day three. by day four, we get our other gym back and move things around again. our more vocal and observant campers point out to me that the space is different and don't i realize that this is a stressor for someone with autism.
no shit.
next time, i am going to invite my campers to be my negotiators. why waste this valuable resource ? and who better to make the point? sometimes, ya just gotta let a crisis happen.
btw, pride not being one of my deficits ( i swallow it with great regularity) i apologized to OG for being a T.F.B.
he accepted.
I believe I've already mentioned that the autism camp I so affectionately write about has been in operation for about 15 years. I believe it would also be fair to say that I am a tad protective of my camp and my campers. It's also unfortunately accurate to say that in spite of my (admittedly anal and compulsive) attentiveness to detail and organization, every year something seems to slip through my grasp.This year was no exception. Somewhere in the back of my mind I knew that another camp was going on at the same time as mine, that another HUGE event was also taking place on the campus where I hold the morning half days of my camp and that my camp and the other camp would be sharing space. Somehow, this did not translate into my NOT using a gymnasium space that I had counted on in my schedule rotation. So, when I arrived a little before 8:00 am on the first day of camp after having spent the previous day hauling and setting up equipment for my activity and arrival stations, and encounter the other camp's director and his entourage of camp counsellors assembling outside the entrance doors of MY arrival space, I was unimpressed. You might even say perturbed. Others on the scene used other words as well..... I think I heard one of the entourage use the phrase Total eFfing Bitch (except he didn't use the word eFfing... if you get my drift). The Other Guy and I exchanged mature pleasantries that went something like this:
OG: the building manager was supposed to have told you about our camp
me: he did
OG: so why the surprise
me: i'm not surprised about the camp.... i'm surprised about the space that your camp is using ( i am also getting a bit panicky about the 60 plus autistic camp participants and the 60 students who will be arriving ANY TIME NOW who will NOT have an arrival gym.... not good, not good at all)
OG: i had this space booked already....
me: could you have said anything that could be more unhelpful than that statement?!
OG: ( slack jaw stare)
me: i don't CARE about that.... what are we going to do now? right this moment!!!
OG: ( slack jaw stare)
[pause.... imagine 60 autistic people spread over a large arrival space, say the size of a large gymnasium wall; they can arrive and bring their stuff to a designated spot, it will stay there undisturbed while they can go to the other activity spaces and begin their large equipment activity, or their fine motor activity or their outdoor activity.. following these activities, they can return to that large arrival space and use its spacious bottom half (divided by a sound barrier curtain) to engage in games skills activities. the 60 campers are divided into four groups so that no more than 15 people are in an activity space at a time.... perfect for this population... this is now dismantled by the loss of the second gym to the Other Guy's camp. just thinking about it makes me livid]
me: so, my campers, who always get the shit end of the stick, will have to be the ones to do the adjusting ?! my campers who have meltdowns when a back pack is misplaced by a quarter of an inch will be the ones doing the adjusting?!! [ you can see, i was livid]
OG: ( clenched jaw terror)
OG's barbie doll counsellor [ ok, that's totally unfair, but did i mention i was livid?] : well, if you like you can see the schedule... right over here on the wall [my schedule is also on numerous surfaces, but never mind; the writing is now on the wall as far as i'm concerned]
me: please do not placate me; in fact, it would probably be a good idea not to speak to me at all for at least the next hour or so.... i shall certainly be verbally abusive [ i wondered at the time about the word "placate" .... my therapist tells me that i ought not to wield my intellect like a weapon.still, it was out of my mouth before i could stop myself]
upshot: my camp moved across the hall; we reorganized one space so that three different types of activity could go on in more or less divided and function -specific stations and we got it done in the 15 minutes we had before the campers arrived. i was seething and putting considerable energy into not letting it spill over onto my camp counsellors and certainly not my campers. we get the day going and even though the kids are more agitated than i'd like for what i usually am able to achieve at my camp ( so much unavoidable human noise from all of us sharing one big space for at least three of our activity stations), the day goes reasonably well ( but you can check back to the day one blog and see all the goodies that did happen). we have this arrangement for the next day as well, and then have a big trip to a theme park on day three. by day four, we get our other gym back and move things around again. our more vocal and observant campers point out to me that the space is different and don't i realize that this is a stressor for someone with autism.
no shit.
next time, i am going to invite my campers to be my negotiators. why waste this valuable resource ? and who better to make the point? sometimes, ya just gotta let a crisis happen.
btw, pride not being one of my deficits ( i swallow it with great regularity) i apologized to OG for being a T.F.B.
he accepted.
Friday, September 3, 2010
Triolet Interlude: commemorating birth/day
Love is a habit of heart
weaving its spell over time
holding a flame is its art
love is a habit of heart.
Strange, it begins; doesn't start,
stays at the scene of the crime
love is a habit of heart
weaving its spell over time.
Time is a habit of care
word is a habit of craft
walk on this path if you dare
time is a habit of care.
Trusting with feelings laid bare
tears taste much better when laughed
time is a habit of care
word is a habit of craft.
Care is a habit of word
space is a habit of dance
watching as clear becomes blurred
care is a habit of word.
Solitude's lessons are heard
here, when the heart takes a chance
care is a habit of word
space is a habit of dance.
Heart is a habit of hope
you are a habit of heart
tethered, as if by a rope
heart is a habit of hope.
Climb is a matter of slope,
sweet craves the temper of tart.
Heart is a habit of hope
you are a habit of heart.
Thursday, September 2, 2010
Autism Camp 2010: a.k.a. I don't usually learn much on a " good" day
that being said, the past two days have been decent, considering.
Victoria, my oldest camper and by far my most irreverent, had a huge seizure in the pool locker room, giving her head and cheek bone quite the crack against the wall on her way to the floor. she was shocky for awhile after and then consented to being driven back to the home site in a car instead of on the bus... it likely helped that she was driven by two " hunks" ( last week, before camp, she had spoken with me via email and reminded me that i had to have " hunks" ( ie, handsome, young men) at camp for her amusement). all the same, she was in rough shape and i called her mom and dad to be ready for her once we got her back there. later on in the evening, i called and spoke to her dad. i heard victoria yelling in the background: is that her?
her dad: yes, it is
victoria: give me the phone. hi,you. tell me a joke
i comply.
then i ask if she has a bruise on her face
victoria: yes
me: well, we will be painting faces tomorrow for our out-trip, so no-one will notice
victoria: i will be a rat... maybe a princess rat; but a rat for sure. my dad's a rooster and my mom's a pig.
beat.... a pause just long enough for me to catch the code ( chinese astrology, in case you are still wondering...)
me: i'm a monkey
victoria: i shoulda known that!
me: you're some tough ( that's my newfoundland heritage coming out, there)
victoria: t'anks ( that's her making fun of my newfoundland heritage)
what else... our pristine non-pooping record was broken today with a spectacular spray of shit that earned us a shrill whistle blast and an everybody out.... only ten minutes left, so the damage was not as great as it could have been. moral: promises are empty in the presence of warm bubbly water, and so are bowels.
other gems borne of a few not so good days.....
* planning works
* sleepy kids are cranky when mom has to wake them up to get them to camp (hey, it's our job to wear them out, and we pride ourselves in doing just that)
*balloon badminton is fun ( and possible)
* no matter how badly you toss ( drop) a bowling ball, it manages to hit something and knock it down
*when the kid you're working with makes funny noises and/or does strange things, other people look at you
perhaps the " not so good days" are gems in themselves and perhaps this camp is like a river... we never dip our hands into the same water twice
Victoria, my oldest camper and by far my most irreverent, had a huge seizure in the pool locker room, giving her head and cheek bone quite the crack against the wall on her way to the floor. she was shocky for awhile after and then consented to being driven back to the home site in a car instead of on the bus... it likely helped that she was driven by two " hunks" ( last week, before camp, she had spoken with me via email and reminded me that i had to have " hunks" ( ie, handsome, young men) at camp for her amusement). all the same, she was in rough shape and i called her mom and dad to be ready for her once we got her back there. later on in the evening, i called and spoke to her dad. i heard victoria yelling in the background: is that her?
her dad: yes, it is
victoria: give me the phone. hi,you. tell me a joke
i comply.
then i ask if she has a bruise on her face
victoria: yes
me: well, we will be painting faces tomorrow for our out-trip, so no-one will notice
victoria: i will be a rat... maybe a princess rat; but a rat for sure. my dad's a rooster and my mom's a pig.
beat.... a pause just long enough for me to catch the code ( chinese astrology, in case you are still wondering...)
me: i'm a monkey
victoria: i shoulda known that!
me: you're some tough ( that's my newfoundland heritage coming out, there)
victoria: t'anks ( that's her making fun of my newfoundland heritage)
what else... our pristine non-pooping record was broken today with a spectacular spray of shit that earned us a shrill whistle blast and an everybody out.... only ten minutes left, so the damage was not as great as it could have been. moral: promises are empty in the presence of warm bubbly water, and so are bowels.
other gems borne of a few not so good days.....
* planning works
* sleepy kids are cranky when mom has to wake them up to get them to camp (hey, it's our job to wear them out, and we pride ourselves in doing just that)
*balloon badminton is fun ( and possible)
* no matter how badly you toss ( drop) a bowling ball, it manages to hit something and knock it down
*when the kid you're working with makes funny noises and/or does strange things, other people look at you
perhaps the " not so good days" are gems in themselves and perhaps this camp is like a river... we never dip our hands into the same water twice
Wednesday, September 1, 2010
Autism camp 2010: writing from the inside out
... you need to know up front that i am a deeply damaged person & the mere fact of my survival with/in this world of others is an accomplishment; that, you need to know
you need to know that preferences are baffling and i have no idea what one is and i wouldn't know one if it bit me on the arse and i wish i was not called upon so often to have to know what the damn things are much less express them, and thinking about this all the time is exhausting; this you need to know
you need to know that i don't know what triggers those awful responses i sometimes have and that i don't know when or how those things roll in like thunder clouds and those cracking and crashing sounds i hear might be only mine but i hear them anyway and i feel them too and i am scared shitless and ashamed but i do the things i have to do to get through; that you need to know
... and by the way, you need to know that darkness has a sound and a touch and a temperature; this you need to know
you need to know that some mornings it can take me hours to get dressed because i have to change my clothes so often because they ITCH or they don't feel right or they don't work together or they aren't matching the ways they need to or they are and it still doesn't matter because something could happen later on and what i am wearing will not be what is needed in the time when i should have been wearing something else and i forgot about this thing that was going to happen in this time when i was getting ready earlier and that is what was making it so impossible earlier, so much to consider, so many ways that things can turn out; that you need to know
you need to know that i might have lots of times when i appear to be just like you and that perhaps i am more like you than you know; this you need to know
that is enough for now; so much for this and that
you need to know that preferences are baffling and i have no idea what one is and i wouldn't know one if it bit me on the arse and i wish i was not called upon so often to have to know what the damn things are much less express them, and thinking about this all the time is exhausting; this you need to know
you need to know that i don't know what triggers those awful responses i sometimes have and that i don't know when or how those things roll in like thunder clouds and those cracking and crashing sounds i hear might be only mine but i hear them anyway and i feel them too and i am scared shitless and ashamed but i do the things i have to do to get through; that you need to know
... and by the way, you need to know that darkness has a sound and a touch and a temperature; this you need to know
you need to know that some mornings it can take me hours to get dressed because i have to change my clothes so often because they ITCH or they don't feel right or they don't work together or they aren't matching the ways they need to or they are and it still doesn't matter because something could happen later on and what i am wearing will not be what is needed in the time when i should have been wearing something else and i forgot about this thing that was going to happen in this time when i was getting ready earlier and that is what was making it so impossible earlier, so much to consider, so many ways that things can turn out; that you need to know
you need to know that i might have lots of times when i appear to be just like you and that perhaps i am more like you than you know; this you need to know
that is enough for now; so much for this and that
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