a beautiful night.
the sky is light cobalt and the tree frogs have replaced the birds- a constant soft hum.
the kids are in bed.
the day is closing it's eyes.
today was good in it's hardness. it reminded me of things i needed to remember.
mondays are always our toughest, readjusting from the weekend, and zoe was especially 'off'. she was easily annoyed, things were 'scratchy', questions were being repeated, she had a far away look in her eye, there was disconnect. i responded poorly. i responded with high expectations and not a lot of understanding. i responded out of a much bigger frustration than the monday morning challenges. out of a 'need' for her to be normal, out of a desire to not have her be different. i responded out of fear, not out of faith. of course, none of that helped, either of us.
at around 11 am, my aunt called and asked if she and my uncle could take us to lunch because they were in the neighborhood. sounded perfect. we weren't getting very far at home anyway, and zoe tends to do well when she gets to socialize with people who like her, especially with people who love her. so i was hoping this would help reconnect the circuits. it didn't. she was stuck there too. she sat at the burger place and talked american girl dolls, and played with her littlest pet shop pet. she wasn't engaged- she was just 'off'.
i was annoyed. i just wanted to talk to them with out being interrupted. i didn't want to hear about her dolls and i really didn't want her inability to participate to be so glaring. i wanted them to see her and see progress. i wanted them to see her on a good day- all circuits firing together-the system working in unison. so it just added to my frustration with her, she wasn't living up to my expectations for the day.
after lunch we got dropped off at bryns school and walked home with him. i held his hand, zoe trailing behind, complaining about how it was so unfair that i wouldn't let her pet every dog we walked by. i was so irritated. i couldn't get out of my head either. i went to my happy place. i returned to ethiopia, to the pool with my book, and lisa, and happy hour and people who speak other languages and don't know zoe, with people who've never heard of a nonverbal learning disability. when we got home bryn ate his snack and she went upstairs to play with the dolls and i got on the computer. i wanted to catch up on emails, and to make myself feel worse by checking facebook, where everyone always seems to put there best face forward, where other peoples lives always look pretty. but that backfired. someone had posted a youtube link about a girl with severe autism who is 14 and has never spoken, but recently learned to type and has been able to express herself incredibly well. as i watched this girl and listened to her story and heard her words through the computer about her life-her perspective- her feelings- her sensory system-her isolation-her desire to fit in- her overwhelm by life- her inability to hold it together even when she knows what the right thing to do is because she just can't.
her words were similar to how zoe will explain her world. yes, this girl is an extreme example, but i realized, zoe's world is on that spectrum. and then i felt complicated emotions; thanks, sadness, impressed- but mostly i felt like an idiot. how quickly i forget how much zoe does, given a differently operating nervous system, how far she's come. how quickly i dive right into 'lets be normal'. she gives me an inch, i want to take a mile. the worse part is that on her most challenged days, i add to her struggle by being annoyed with her- and i'm her mother!
i hung my head and went to talk to her. she was sitting beside her cd player, playing the first 6 notes of a miley cyrus song, over and over again. i told her i loved her and i was sorry that i was having a sticky day. that i get stuck not understanding her. i asked her what it feels like when she's having an 'off' day.
"it's hard to explain. today it just feels really quiet. like i have a bubble around me, and i'm safe in my own little world."
at least she said safe. at least she didn't say 'i've created this bubble to protect me from my idiot mother who just doesn't get it!' but i don't get it. and when i think i might- it's for a moment or a day if i'm lucky- and then i forget again.
it's about the perspective.
is this a table or two people facing each other?
how do i see her? do i look at the image that appears obvious? or readjust my eyes and see the image formed in the negative space? do i look at her as disabled normal or super highly functioning on the spectrum?
it's about framing it. wrapping it up. packaging.
ironically, it's the frame you don't want - it's the label you fear- that can give the greatest sense of appreciation and thanks.
maybe someday i'll 'arrive'.
maybe someday i'll be able to take her out of a binding and just for once and for all, see simply 'zoe'. purely. maybe someday i'll remember.
the sky is light cobalt and the tree frogs have replaced the birds- a constant soft hum.
the kids are in bed.
the day is closing it's eyes.
today was good in it's hardness. it reminded me of things i needed to remember.
mondays are always our toughest, readjusting from the weekend, and zoe was especially 'off'. she was easily annoyed, things were 'scratchy', questions were being repeated, she had a far away look in her eye, there was disconnect. i responded poorly. i responded with high expectations and not a lot of understanding. i responded out of a much bigger frustration than the monday morning challenges. out of a 'need' for her to be normal, out of a desire to not have her be different. i responded out of fear, not out of faith. of course, none of that helped, either of us.
at around 11 am, my aunt called and asked if she and my uncle could take us to lunch because they were in the neighborhood. sounded perfect. we weren't getting very far at home anyway, and zoe tends to do well when she gets to socialize with people who like her, especially with people who love her. so i was hoping this would help reconnect the circuits. it didn't. she was stuck there too. she sat at the burger place and talked american girl dolls, and played with her littlest pet shop pet. she wasn't engaged- she was just 'off'.
i was annoyed. i just wanted to talk to them with out being interrupted. i didn't want to hear about her dolls and i really didn't want her inability to participate to be so glaring. i wanted them to see her and see progress. i wanted them to see her on a good day- all circuits firing together-the system working in unison. so it just added to my frustration with her, she wasn't living up to my expectations for the day.
after lunch we got dropped off at bryns school and walked home with him. i held his hand, zoe trailing behind, complaining about how it was so unfair that i wouldn't let her pet every dog we walked by. i was so irritated. i couldn't get out of my head either. i went to my happy place. i returned to ethiopia, to the pool with my book, and lisa, and happy hour and people who speak other languages and don't know zoe, with people who've never heard of a nonverbal learning disability. when we got home bryn ate his snack and she went upstairs to play with the dolls and i got on the computer. i wanted to catch up on emails, and to make myself feel worse by checking facebook, where everyone always seems to put there best face forward, where other peoples lives always look pretty. but that backfired. someone had posted a youtube link about a girl with severe autism who is 14 and has never spoken, but recently learned to type and has been able to express herself incredibly well. as i watched this girl and listened to her story and heard her words through the computer about her life-her perspective- her feelings- her sensory system-her isolation-her desire to fit in- her overwhelm by life- her inability to hold it together even when she knows what the right thing to do is because she just can't.
her words were similar to how zoe will explain her world. yes, this girl is an extreme example, but i realized, zoe's world is on that spectrum. and then i felt complicated emotions; thanks, sadness, impressed- but mostly i felt like an idiot. how quickly i forget how much zoe does, given a differently operating nervous system, how far she's come. how quickly i dive right into 'lets be normal'. she gives me an inch, i want to take a mile. the worse part is that on her most challenged days, i add to her struggle by being annoyed with her- and i'm her mother!
i hung my head and went to talk to her. she was sitting beside her cd player, playing the first 6 notes of a miley cyrus song, over and over again. i told her i loved her and i was sorry that i was having a sticky day. that i get stuck not understanding her. i asked her what it feels like when she's having an 'off' day.
"it's hard to explain. today it just feels really quiet. like i have a bubble around me, and i'm safe in my own little world."
at least she said safe. at least she didn't say 'i've created this bubble to protect me from my idiot mother who just doesn't get it!' but i don't get it. and when i think i might- it's for a moment or a day if i'm lucky- and then i forget again.
it's about the perspective.
is this a table or two people facing each other?
how do i see her? do i look at the image that appears obvious? or readjust my eyes and see the image formed in the negative space? do i look at her as disabled normal or super highly functioning on the spectrum?
it's about framing it. wrapping it up. packaging.
ironically, it's the frame you don't want - it's the label you fear- that can give the greatest sense of appreciation and thanks.
maybe someday i'll 'arrive'.
maybe someday i'll be able to take her out of a binding and just for once and for all, see simply 'zoe'. purely. maybe someday i'll remember.
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