today zoe and i 'met' taylor morris, a girl with aspergers syndrome. we actually watched her youtube video explaining life for her on the autistic spectrum http://www.youtube.com/watch?v=U05xcavvgno
(found through another blog http://nldinontario.blogspot.com). it was fascinating.
first i watched it alone and then we watched it together. it was very cool on many fronts. first of all it was encouraging because she is this beautiful, highly successful and more importantly, happy, 17 year old girl. it gave hope. i tried to stuff the mildly panicky 'but what was the key to helping her, what was the magic?' feeling away and just enjoy what she said- so we could learn from it. and i tried to stuff the creeping self-doubt of 'maybe the key is that she was in school, taught by people who know what the heck they're doing and not home-schooled' feeling away and tried to remember this is about zoe not me.
zoe was enthralled. she nodded along with this girl's well articulated words, smiled sometimes, and said- 'that's like me'. i was so happy to see she felt less alone- that for zoe who processes her life out loud, she could hear clearly, someone else processing their life out loud, a life that she understands. taylor talked about feeling trapped in a world that often didn't make sense- and needing to be taught what comes naturally to most people in order to fit into that world. zoe has heard this stuff before- in books and from us- but it was totally different to hear it from a girl who gets it- out loud on a screen, appearing to look right at her. she couldn't get enough. she wanted to watch all the video's this girl had ever made- we would pause it and discuss how zoe felt- if it was similar or different to zoe's experience. for 2 hours we watched and talked and zoe shared what her 'other world' is like, how frustrating it is to not know when something is going to scare her, or upset her one day, when another day, it won't bother her at all. we talked about learning tools to manage the things that seem 'weird' and she explained that she often doesn't know what she's doing is weird- she's just responding to the world around her. she was happy to know she's not alone, and that there are ways to learn how to feel less alone.
for me, aside from that hard to explain but 'panicky' feeling that i'm somehow failing to help her reach her full potential- it was a great morning. as i watched and listened to this girl and my daughter- i realized there is no ' magic bullet' no ultimate 'key' to unlock her. it's about listening, following her cues, the floortime philosophy lived out. and i became a bit unlocked. i was reminded that zoe's brain is categorically different. that it's OK to acknowledge this- that it's even essential to acknowledge this. it isn't about a 'cure' or rehabing someone into being 'normal'. it's about helping each other to understand each other.
we are on a path with no clear road map- we've got some machete's and we're in a jungle. it's a metaphor for life- you go to the next stop sign and wait for direction- you never really know the full path. it's given in bits and pieces, frustrating as that is, that's life.
one of my favorite dr. seuss books is 'oh the places you'll go!' i was given it at the end of high school by a great friend (one who i can still laugh the belly-aching laughs with) and i've read it over and over since then- and now to my kids. it talks in that dr. seuss-sing-songy-made-up-word language about life- it's ups and downs.
"You will come to a place where the streets are not marked. Some windows are lighted. But mostly they're darked. A place you could sprain both your elbow and chin! Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win? And IF you go in, should you turn left or right.. or right-and-three-quarters? Or, maybe, no quite? Or go around back and sneak in from behind? Simple it's not, I'm afraid you will find, for a mind-maker-upper to make up his mind."
i could quote the whole book, but i won't. it just sums up life well- and life with a kid on the spectrum might just be a louder version of life on fast-forward.
living with zoe makes this impossible to forget, the road forks and forks again, and we're back where we started from at one point- yet i still manage to forget this! i still search for the clearly marked trail- perfect signage- travel insurance- a guarantee.
but there is only putting one foot in front of the other, holding hands and walking through it together.
(found through another blog http://nldinontario.blogspot.com). it was fascinating.
first i watched it alone and then we watched it together. it was very cool on many fronts. first of all it was encouraging because she is this beautiful, highly successful and more importantly, happy, 17 year old girl. it gave hope. i tried to stuff the mildly panicky 'but what was the key to helping her, what was the magic?' feeling away and just enjoy what she said- so we could learn from it. and i tried to stuff the creeping self-doubt of 'maybe the key is that she was in school, taught by people who know what the heck they're doing and not home-schooled' feeling away and tried to remember this is about zoe not me.
zoe was enthralled. she nodded along with this girl's well articulated words, smiled sometimes, and said- 'that's like me'. i was so happy to see she felt less alone- that for zoe who processes her life out loud, she could hear clearly, someone else processing their life out loud, a life that she understands. taylor talked about feeling trapped in a world that often didn't make sense- and needing to be taught what comes naturally to most people in order to fit into that world. zoe has heard this stuff before- in books and from us- but it was totally different to hear it from a girl who gets it- out loud on a screen, appearing to look right at her. she couldn't get enough. she wanted to watch all the video's this girl had ever made- we would pause it and discuss how zoe felt- if it was similar or different to zoe's experience. for 2 hours we watched and talked and zoe shared what her 'other world' is like, how frustrating it is to not know when something is going to scare her, or upset her one day, when another day, it won't bother her at all. we talked about learning tools to manage the things that seem 'weird' and she explained that she often doesn't know what she's doing is weird- she's just responding to the world around her. she was happy to know she's not alone, and that there are ways to learn how to feel less alone.
for me, aside from that hard to explain but 'panicky' feeling that i'm somehow failing to help her reach her full potential- it was a great morning. as i watched and listened to this girl and my daughter- i realized there is no ' magic bullet' no ultimate 'key' to unlock her. it's about listening, following her cues, the floortime philosophy lived out. and i became a bit unlocked. i was reminded that zoe's brain is categorically different. that it's OK to acknowledge this- that it's even essential to acknowledge this. it isn't about a 'cure' or rehabing someone into being 'normal'. it's about helping each other to understand each other.
we are on a path with no clear road map- we've got some machete's and we're in a jungle. it's a metaphor for life- you go to the next stop sign and wait for direction- you never really know the full path. it's given in bits and pieces, frustrating as that is, that's life.
one of my favorite dr. seuss books is 'oh the places you'll go!' i was given it at the end of high school by a great friend (one who i can still laugh the belly-aching laughs with) and i've read it over and over since then- and now to my kids. it talks in that dr. seuss-sing-songy-made-up-word language about life- it's ups and downs.
"You will come to a place where the streets are not marked. Some windows are lighted. But mostly they're darked. A place you could sprain both your elbow and chin! Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win? And IF you go in, should you turn left or right.. or right-and-three-quarters? Or, maybe, no quite? Or go around back and sneak in from behind? Simple it's not, I'm afraid you will find, for a mind-maker-upper to make up his mind."
i could quote the whole book, but i won't. it just sums up life well- and life with a kid on the spectrum might just be a louder version of life on fast-forward.
living with zoe makes this impossible to forget, the road forks and forks again, and we're back where we started from at one point- yet i still manage to forget this! i still search for the clearly marked trail- perfect signage- travel insurance- a guarantee.
but there is only putting one foot in front of the other, holding hands and walking through it together.
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