i knew if i posted that things were going well, that it wouldn't last. murphy's law. forgot to knock on wood. maybe i should have been done with the blog. end on a good note. maybe casein and milk aren't that bad. maybe too many vitamins is. maybe it's just random. maybe i should have called this space, "be crazy and never get it". or "saga of a nutball mom".
ugghh!
it's just life, isn't it? at least life with a child with learning differences- or is it all children? that is often the question. how much is attributable to her special needs versus normal 10 year old behavior? i mean she is becoming a "tween". there are hormones- i'm sure. there is the separation, individualization, that is supposed to be happening. but for some reason, in our context it just seems more challenging.
here's an example.
we spent the weekend in the north carolina mountains. absolutely beautiful, inspiring, fun, relaxing and all else posititve; and today, we had to leave. this requires that "going somewhere with your children thing"- stripping beds, packing clothes and toys and getting them to clean up, etc. i was trying to find zoe to get her to clean up with her brothers.
my parents mountain house is actually a main house and a little house- attached by a porch/ veranda. this is fabulous- because the kids get to go over to the little house to play, make forts, what ever, and we can sleep in, or read or talk with out disruption. kind of a win-win. independence and freedom for all. the land is on a dirt road, it's rural. there are neighbors, but not a lot of traffic, and not a lot of people. the kids are allowed to play outside with out us, but they need to tell us where they're going, and they are absolutely NOT allowed anywhere near the lake without adult supervision, and a life jacket.
now for most of zoe's life, she's been unbelievably compliant. she's never been a disobedient kid. she's been trustworthy to a fault. tattling on herself- even this year.
"mommy, i'm sorry but i ate those cookies."
and i'm thinking, 'i have it so easy!'
but lately, the past few weeks, she's become sneakier. and a little bit entitled. she's suddenly decided, or so it seems, that if she doesn't agree with the reason behind the rule, then she'll just go ahead and not follow it. she'll have consequences and she'll apologize, but she'll again, decide to follow her own desire and doesn't care as much about obeying the rules. most of the time this is not dangerous, or in anyway a big deal. most of the time it's like, " i know i'm supposed to go upstairs and get dressed now, but i'd rather stop and play the piano." (mildly disobedient, but no big deal).
the problem is, i don't trust her judgment. so when i was calling to her over and over for 20 minutes today, with no answer, unable to find her- i panicked. all i could think was that she'd decided she didn't agree with the rule to not go down to the lake, and had gone down, swam and drowned. i was just about to go down to the lake, looking for evidence, when jude came out of the little house shouting, "i found her!! she was hiding in the little closet."
i wanted to throttle her.
but the thing is, really, it's not that big of a deal. i mean, she really thought she was playing a trick on me, being funny, hiding. but to me, it was horribly disobedient, because i was so afraid of what could have been. because ultimately, i don't yet trust her. i dont' trust her judgment. if it had been jude, i might have been mad that he didn't answer when i specifically said, "answer me!", but i trust him, that he would never go down to the lake without me. but zoe, not the same thing.
and i found that i was getting mad at the possibilities and the disabilities and the overall big picture. i was reacting to her sometimes poor judgment. i wasn't allowing her to just be a goofy 10 year old.
she got in big trouble. she had to clean up the toys all by herself. she got a giant lecture on trust and being a "tween", and the struggle to find independence and still not make your parents crazy. she asked if this was all because of her nonverbal learning disability and i honestly said, " i don't know."
because i don't. maybe it's just 10 year old stuff. maybe it's having that immature right brain. but hopefully, we can get there - and i'll have to work extra hard to explain the "whys", and enforce the "because" and walk that line, find that balance between letting her wander, or hide and calling her back when she's gone to far. we both need to trust each other- she needs to know that i can let her go, but only if she'll respond when i call her name.
so we talked it out- and trust became our new goal. it's the key. we have the same goal- (thank God!) for her to become a functionally independent adult, who makes good choices. so that is what we'll strive for, and maybe, because of our unique circumstances, we'll learn it early, before "tween" becomes "teen". but the road is long- and as it's usually one step up, two steps back, but i'm getting used to a little shuffle.
Monday, May 31, 2010
Thursday, May 27, 2010
no stick finish
i can't believe it's over. my year with zoe. my first year of homeschooling. my life changing year- of creating space- of changing priorities, focus- of digging into something i'd never dreamed i'd do. it's a weird feeling. it's a combo of, "i'm really proud of us" and "has she actually learned anything?".
and it crept up on me. all of a sudden, just when i thought we were getting the hang of it- it's summer- the boys are home, the sun is hot, and it's time to go outside and play. i thought maybe it would feel more climactic. like my growing up end of the year always felt. there should be "field day" or yearbooks or something.
and i thought i'd feel really exhausted and done and desperate for summer- but instead i had this feeling of unease, unsettledness, insecurity. she just finished 4th grade- but what does that really mean? there are no objective tests to prove any change in her knowledge base. there is no report card to compare her with other fourth graders. it's just me. and i had heavy feelings of self-doubt.
mike could tell something was eating me. and as usually, he put it in perspective. he reminded me of where we'd been. of last spring. of her inaccessibility. her far away soul. he said that ultimately even if she had learned no academics this year (which he assured me wasn't true), she was still much better off. because she's in a place of relative peace. a place where learning is able to happen. a place that most of the time is happy. her feelings or at least comments, of not liking herself, are gone. she has a much easier time with social interactions. it's kind of like having the old zoe back (the one before she was eaten by the anxiety/ sticky monster 2 years ago) but more alert, more engaged, desiring and seeking connection, and more functional.
i decided to have an end-of-the-year celebration- for both of us.
so i made her a book about our year.
i wrote her a letter, about what i'd learned, about what i loved about our time together, and i put in as much objective evidence i could that she'd learned. i also wrote down all that we'd covered, not that she'd mastered, but that we'd worked through. and it was a lot, and i was proud. we did a lot. we made major improvements. other people have even noticed :).
yesterday, we had our celebration. we dropped the boys with my mom (thank you!) and we went to the american girl doll store and cafe for lunch. this was especially appropriate because our history theme for the year and our reading curriculum were the historical american girl books. and it was so much fun. but on the way there i realized i had forgotten the book i'd made her. i was frustrated, because i had wanted it to be the perfect afternoon, with closure and climax and finality. but really it was so typical, that i'd forget it at home. it was so, life.
zoe was amazing. she just said, "mommy, it's OK. just take a deep breath. you just need to be flexible. you can give me the surprise when we get home tonight, i'm fine with that."
did i just hear the words, "OK", and "be flexible" and "i'm fine with that", all out of her mouth- in the same paragraph?
and that, was the perfect non-sticky end to our year.
and it crept up on me. all of a sudden, just when i thought we were getting the hang of it- it's summer- the boys are home, the sun is hot, and it's time to go outside and play. i thought maybe it would feel more climactic. like my growing up end of the year always felt. there should be "field day" or yearbooks or something.
and i thought i'd feel really exhausted and done and desperate for summer- but instead i had this feeling of unease, unsettledness, insecurity. she just finished 4th grade- but what does that really mean? there are no objective tests to prove any change in her knowledge base. there is no report card to compare her with other fourth graders. it's just me. and i had heavy feelings of self-doubt.
mike could tell something was eating me. and as usually, he put it in perspective. he reminded me of where we'd been. of last spring. of her inaccessibility. her far away soul. he said that ultimately even if she had learned no academics this year (which he assured me wasn't true), she was still much better off. because she's in a place of relative peace. a place where learning is able to happen. a place that most of the time is happy. her feelings or at least comments, of not liking herself, are gone. she has a much easier time with social interactions. it's kind of like having the old zoe back (the one before she was eaten by the anxiety/ sticky monster 2 years ago) but more alert, more engaged, desiring and seeking connection, and more functional.
i decided to have an end-of-the-year celebration- for both of us.
so i made her a book about our year.
i wrote her a letter, about what i'd learned, about what i loved about our time together, and i put in as much objective evidence i could that she'd learned. i also wrote down all that we'd covered, not that she'd mastered, but that we'd worked through. and it was a lot, and i was proud. we did a lot. we made major improvements. other people have even noticed :).
yesterday, we had our celebration. we dropped the boys with my mom (thank you!) and we went to the american girl doll store and cafe for lunch. this was especially appropriate because our history theme for the year and our reading curriculum were the historical american girl books. and it was so much fun. but on the way there i realized i had forgotten the book i'd made her. i was frustrated, because i had wanted it to be the perfect afternoon, with closure and climax and finality. but really it was so typical, that i'd forget it at home. it was so, life.
zoe was amazing. she just said, "mommy, it's OK. just take a deep breath. you just need to be flexible. you can give me the surprise when we get home tonight, i'm fine with that."
did i just hear the words, "OK", and "be flexible" and "i'm fine with that", all out of her mouth- in the same paragraph?
and that, was the perfect non-sticky end to our year.
Wednesday, May 19, 2010
armless in DC
last week i was in DC with mike. just mike. and it was delicious.
getting ready to leave however, not so fun.
it seems that leaving your children, or actually any transaction involving traveling and children, be it with them or with out them, involves good planning and organization, and ends up being highly stressful. i'm not very organized, and i leave everything to last minute-and i always pay the price for this. i dream of being one of those people with the computer print out of everyone's schedules, the person who knows exactly what to pack, the person with the printed out list of what they need to bring on a trip. i am not that person, i am a terrible packer. i always have too much or too little. and i always forget socks, or my kids socks. and if i'm trying really hard to not forget socks, then i'll forget something even more important- like pants. the worst was the time i forgot diapers on the 20 hour trip to italy when zoe was 8 months old, before they sold them at the airport. i was that lady sidling up to random women with a child any age, making small talk and then asking for a diaper. "it's ok that it's a size 6, i'm sure it will be fine!"
the morning i was leaving for DC, started with zoe peeing on my hand. i was trying to collect a urine sample for brain balance to evaluate her 'allergy' profile. it was to be collected first thing that morning, driven to duluth (in some forsaken outside the perimeter location) where she also needed a blood test, all on an empty stomach. i will refrain from venting about suburbia, and strip malls and traffic and leave it that i vented to zoe the whole way there and back, while getting lost twice and cursing who ever invented "office parks". when we finally arrived at the 80's dark glass building- there was of course no signage- leaving us to circle it twice before finding the entrance. we walked in, and it was like we were in "the matrix".
a table, a book and a phone.
that was it. oh and a sign which read, 'sign in and dial "0"'. creepy. there were also no lights on and no people. when we finally got called back, zoe started freaking out. crying, going into the fetal position, refusing to unflex her arm, and after my hour long drive into suburan hell, i had no patience. alas, she was distracted by a Guster song on my iphone and didn't even notice the stick in the arm. we were done- and on our way back to the city. lost once, briefly, and not as much traffic. i dropped her at my moms and headed home to pack and leave.
and then we were off. on that plane. a time machine. back to the days of just the two of us, traveling. i had low expectations, which always helps. but it was fabulous. for me, there was no agenda, no interruptions, just hours to walk anonymously. to wander. bookshops and museums and internal quiet in the external noise. regrouping. being lost. park benches to sit on, fountains to listen to, sculpture gardens to walk through and writing to be written, with out anyone asking for a glass of milk or a bottom to be wiped. i didn't even realize how much i needed that. to be reminded of myself- separately from my beloved family.
i've never been a big believer in the "you have to know yourself- really know yourself" before you can fully love someone else. mike and i heard a lot of that when we got married in our early twenties.
"why would you get married now?? you're so young. you don't even know yourself. what if you change or he changes?"
either i was very self-actualized or just didn't care, or am kind of slow. but i felt that i'll never fully know myself because hopefully our lives will be changing and we'll be continually evolving and what seemed more important than some imagined 'arrival', was finding a good match, someone you deeply love, to go through it all with. and that's what i was so blessed to find with mike almost 17 years ago.
now our lives have become so physically and mentally entwined. then you add in our children-perhaps especially one with special needs- and you begin to feel a little bit like a fish who has turned into an octopus. how you move is different. what you can do is different. you now have all these arms and they have suction cups! so being alone, and being alone with him, was like shedding the arms for a few days. and it was fantastic.
mike and i sometimes reflect back to our years with out kids and think, what did we do with all that time? and why didn't we value it more? but we find that after a few armless days, we realize that everything now looks so different, that you can never go back to being that fish, now your just an armless octopus and what can they do? and in all those parks and museums you think, "oh jude would love this!" or "i can't wait to bring zoe back here!" or "i don't think bryn is too young to like DC". and you realize that your life is not your own anymore, it will never go back to being just yours. but now instead of just seeing the world through your own eyes you see it through all theirs as well. and more perspectives are a great thing, especially the view from a child.
it's like that line from Out of Africa.
"you've ruined it for me you know." karen blixen says.
"ruined what?" denys says.
"being alone."
i'll take ruined. i'll take my eight,long,tangled, suction-cuppy arms.
but two days off with my man, can go a long way in helping me remember that.
getting ready to leave however, not so fun.
it seems that leaving your children, or actually any transaction involving traveling and children, be it with them or with out them, involves good planning and organization, and ends up being highly stressful. i'm not very organized, and i leave everything to last minute-and i always pay the price for this. i dream of being one of those people with the computer print out of everyone's schedules, the person who knows exactly what to pack, the person with the printed out list of what they need to bring on a trip. i am not that person, i am a terrible packer. i always have too much or too little. and i always forget socks, or my kids socks. and if i'm trying really hard to not forget socks, then i'll forget something even more important- like pants. the worst was the time i forgot diapers on the 20 hour trip to italy when zoe was 8 months old, before they sold them at the airport. i was that lady sidling up to random women with a child any age, making small talk and then asking for a diaper. "it's ok that it's a size 6, i'm sure it will be fine!"
the morning i was leaving for DC, started with zoe peeing on my hand. i was trying to collect a urine sample for brain balance to evaluate her 'allergy' profile. it was to be collected first thing that morning, driven to duluth (in some forsaken outside the perimeter location) where she also needed a blood test, all on an empty stomach. i will refrain from venting about suburbia, and strip malls and traffic and leave it that i vented to zoe the whole way there and back, while getting lost twice and cursing who ever invented "office parks". when we finally arrived at the 80's dark glass building- there was of course no signage- leaving us to circle it twice before finding the entrance. we walked in, and it was like we were in "the matrix".
a table, a book and a phone.
that was it. oh and a sign which read, 'sign in and dial "0"'. creepy. there were also no lights on and no people. when we finally got called back, zoe started freaking out. crying, going into the fetal position, refusing to unflex her arm, and after my hour long drive into suburan hell, i had no patience. alas, she was distracted by a Guster song on my iphone and didn't even notice the stick in the arm. we were done- and on our way back to the city. lost once, briefly, and not as much traffic. i dropped her at my moms and headed home to pack and leave.
and then we were off. on that plane. a time machine. back to the days of just the two of us, traveling. i had low expectations, which always helps. but it was fabulous. for me, there was no agenda, no interruptions, just hours to walk anonymously. to wander. bookshops and museums and internal quiet in the external noise. regrouping. being lost. park benches to sit on, fountains to listen to, sculpture gardens to walk through and writing to be written, with out anyone asking for a glass of milk or a bottom to be wiped. i didn't even realize how much i needed that. to be reminded of myself- separately from my beloved family.
i've never been a big believer in the "you have to know yourself- really know yourself" before you can fully love someone else. mike and i heard a lot of that when we got married in our early twenties.
"why would you get married now?? you're so young. you don't even know yourself. what if you change or he changes?"
either i was very self-actualized or just didn't care, or am kind of slow. but i felt that i'll never fully know myself because hopefully our lives will be changing and we'll be continually evolving and what seemed more important than some imagined 'arrival', was finding a good match, someone you deeply love, to go through it all with. and that's what i was so blessed to find with mike almost 17 years ago.
now our lives have become so physically and mentally entwined. then you add in our children-perhaps especially one with special needs- and you begin to feel a little bit like a fish who has turned into an octopus. how you move is different. what you can do is different. you now have all these arms and they have suction cups! so being alone, and being alone with him, was like shedding the arms for a few days. and it was fantastic.
mike and i sometimes reflect back to our years with out kids and think, what did we do with all that time? and why didn't we value it more? but we find that after a few armless days, we realize that everything now looks so different, that you can never go back to being that fish, now your just an armless octopus and what can they do? and in all those parks and museums you think, "oh jude would love this!" or "i can't wait to bring zoe back here!" or "i don't think bryn is too young to like DC". and you realize that your life is not your own anymore, it will never go back to being just yours. but now instead of just seeing the world through your own eyes you see it through all theirs as well. and more perspectives are a great thing, especially the view from a child.
it's like that line from Out of Africa.
"you've ruined it for me you know." karen blixen says.
"ruined what?" denys says.
"being alone."
i'll take ruined. i'll take my eight,long,tangled, suction-cuppy arms.
but two days off with my man, can go a long way in helping me remember that.
Saturday, May 15, 2010
why i really decided to homeschool zoe
it happened almost exactly a year ago. i was at work, having a family meeting about a patient who was dying. i had silenced the call several times, and then decided it was my daughters school and i should get it. so i excused myself from the meeting.
"i think you need to come and get her. She's having a hard time."
"OK- well, i'm at work. i'm having a family meeting. someone who is really sick. someone is dying. what's happening with zoe?"
"she's under her desk- she won't come out."
it was my first month at this new job. it was more hours than i'd worked since i'd finished residency. i was really enjoying it. i was learning and having fun. but this was the third call this week, and i was having a hard time figuring out how to manage this. we knew zoe was having a hard time, and we were doing a lot of things for her. she was on some medicine, she was in OT. we'd let go of our au pair, and had been utilizing family to assist with childcare, so to minimize the interaction with people she didn't know well. we'd even gotten a dog. but, things weren't working out- at least not at school. things weren't working out for zoe. she was having high stress. she was falling apart.
we met with the principle, who seemed to think that she was "done" for the year. that she'd learned plenty academically - which was true- but that she clearly wasn't coping at school anymore- which was also true. it was april. mike and i had a moment. it was a moment of utter realization. that all we'd feared, all we'd worried about, but often not said out loud, was coming true. that our lives with her had caught up with us. we were two successful people with close to full time careers. we now owned a house (ok- one brick in the house- but still). we had two other small children. and our oldest- was now loosing it- at a "special school." that's kind of bad news, kind of some of the worst news. yet- there was a sense of absolute clarity, that came fairly quickly.
-it's your kid. you do what you need to do.
clearly, we needed a drastic change in our lives. so we decided- that i would cut way back on work. with in three days, at work, i was talking with my boss (and friend) who asked what was bothering me and i burst into tears- again- full-on ugly cry. weeping. i think she might have even cried too. she told me that i could take a break- work one a day week and figure out what we were going to do. it was temporary. it was life-saving. i went home and began to breathe.
i'm very type A. i'm a planner. i like to make lists. i like pros and cons. so of course, i got to work figuring out the problem. where could she go to school, what would the finances look like. what could we do to get her to a place where she could go to school? could we risk paying for a private school and then having this happen again? on and on.
that sunday, a friend from church asked me why i didn't homeschool the next year.
well that's easy- i said- because she's zoe and i'm kris. because i'm the most impatient person ever- and she's the slowest person ever. because i can't even do homework with her!
but it stayed with me- and i began to ask the question of myself. what was i so afraid of? maybe she needed a complete break- a complete change. maybe it's exactly what she needed. maybe it would be really good for her- maybe it would be good for me.
and when you think about life- it's always the hardest parts that grow us the most. that give us the most opportunity to change our perspective, and in seeing life differently, to change our living.
i was writing in my journal that week and i wrote, "i feel like i need to read the old testament- like Haggai." now i'll be honest- i don't often "hear God". in fact i can count on one hand- OK three fingers- the number of times i've felt, undeniably, the presence or sense of God communing with me. i also couldn't even remember if there was a book in the bible called Haggai. but there is, and that night i read it- all 2 pages of it. it was about the Israelites hearing from God that they needed to re-build the temple. it said basically that they'd been spinning their wheels, working hard and getting no where. that each person was so busy with their own house they'd forgotten all about Gods plan, Gods house. that it was time for a change, a re-focus. and then it said, the people obeyed. and were blessed.
to me it was clear as day. i needed to invest fully, in rebuilding my house. in refocusing my focus. in embracing the child i was given and changing our lives accordingly. for me - it felt like the "answer" was obvious- it was just whether i would take the harder path.
and that is why i'm homeschooling zoe. despite the shocked looks, the "oh i could never!" the "how do you do it?" the "what about your career?", and my complete lack of knowledge of 'how' to teach a child, let alone one with special needs, we embarked on our journey.
has it been easy, no. has it been totally worth it, yes.
i am learning to let go. really. to let go of schedule, of my idea of what a fourth-grader should know, and how well they should write, and how long they should sit still. i've let go of moving at a given pace. i've accepted that learning how to manage frustration is more important than completing the assignment. that understanding the whole story and explaining the sequence verbally is better than writing in little details. i've learned that if you have the tools, but have no idea of how to laterally apply them, then they're not much help- so any lateral thinking is huge. i've learned that she's really smart- but can't test to save her life. that the pieces are there, but we need to help her put them together. that splitting the social from the academic, helps her do much better at both. that the little conversations about "what's wrong with me" are never planned. i've learned that "i think i need an h-u-g" happens so many times a day, and what if i weren't there to give her that. i've learned that both our brains are plastic and that you can teach old dogs new tricks. and we've learned to help each other know when we need a break. know when to move on. know when to say "i'm sorry" and when not to.
so for us, the journey is worth it- there has been much blessing- and what seemed last year like the end of my world- became the most surprisingly beautiful beginning.
"i think you need to come and get her. She's having a hard time."
"OK- well, i'm at work. i'm having a family meeting. someone who is really sick. someone is dying. what's happening with zoe?"
"she's under her desk- she won't come out."
it was my first month at this new job. it was more hours than i'd worked since i'd finished residency. i was really enjoying it. i was learning and having fun. but this was the third call this week, and i was having a hard time figuring out how to manage this. we knew zoe was having a hard time, and we were doing a lot of things for her. she was on some medicine, she was in OT. we'd let go of our au pair, and had been utilizing family to assist with childcare, so to minimize the interaction with people she didn't know well. we'd even gotten a dog. but, things weren't working out- at least not at school. things weren't working out for zoe. she was having high stress. she was falling apart.
we met with the principle, who seemed to think that she was "done" for the year. that she'd learned plenty academically - which was true- but that she clearly wasn't coping at school anymore- which was also true. it was april. mike and i had a moment. it was a moment of utter realization. that all we'd feared, all we'd worried about, but often not said out loud, was coming true. that our lives with her had caught up with us. we were two successful people with close to full time careers. we now owned a house (ok- one brick in the house- but still). we had two other small children. and our oldest- was now loosing it- at a "special school." that's kind of bad news, kind of some of the worst news. yet- there was a sense of absolute clarity, that came fairly quickly.
-it's your kid. you do what you need to do.
clearly, we needed a drastic change in our lives. so we decided- that i would cut way back on work. with in three days, at work, i was talking with my boss (and friend) who asked what was bothering me and i burst into tears- again- full-on ugly cry. weeping. i think she might have even cried too. she told me that i could take a break- work one a day week and figure out what we were going to do. it was temporary. it was life-saving. i went home and began to breathe.
i'm very type A. i'm a planner. i like to make lists. i like pros and cons. so of course, i got to work figuring out the problem. where could she go to school, what would the finances look like. what could we do to get her to a place where she could go to school? could we risk paying for a private school and then having this happen again? on and on.
that sunday, a friend from church asked me why i didn't homeschool the next year.
well that's easy- i said- because she's zoe and i'm kris. because i'm the most impatient person ever- and she's the slowest person ever. because i can't even do homework with her!
but it stayed with me- and i began to ask the question of myself. what was i so afraid of? maybe she needed a complete break- a complete change. maybe it's exactly what she needed. maybe it would be really good for her- maybe it would be good for me.
and when you think about life- it's always the hardest parts that grow us the most. that give us the most opportunity to change our perspective, and in seeing life differently, to change our living.
i was writing in my journal that week and i wrote, "i feel like i need to read the old testament- like Haggai." now i'll be honest- i don't often "hear God". in fact i can count on one hand- OK three fingers- the number of times i've felt, undeniably, the presence or sense of God communing with me. i also couldn't even remember if there was a book in the bible called Haggai. but there is, and that night i read it- all 2 pages of it. it was about the Israelites hearing from God that they needed to re-build the temple. it said basically that they'd been spinning their wheels, working hard and getting no where. that each person was so busy with their own house they'd forgotten all about Gods plan, Gods house. that it was time for a change, a re-focus. and then it said, the people obeyed. and were blessed.
to me it was clear as day. i needed to invest fully, in rebuilding my house. in refocusing my focus. in embracing the child i was given and changing our lives accordingly. for me - it felt like the "answer" was obvious- it was just whether i would take the harder path.
and that is why i'm homeschooling zoe. despite the shocked looks, the "oh i could never!" the "how do you do it?" the "what about your career?", and my complete lack of knowledge of 'how' to teach a child, let alone one with special needs, we embarked on our journey.
has it been easy, no. has it been totally worth it, yes.
i am learning to let go. really. to let go of schedule, of my idea of what a fourth-grader should know, and how well they should write, and how long they should sit still. i've let go of moving at a given pace. i've accepted that learning how to manage frustration is more important than completing the assignment. that understanding the whole story and explaining the sequence verbally is better than writing in little details. i've learned that if you have the tools, but have no idea of how to laterally apply them, then they're not much help- so any lateral thinking is huge. i've learned that she's really smart- but can't test to save her life. that the pieces are there, but we need to help her put them together. that splitting the social from the academic, helps her do much better at both. that the little conversations about "what's wrong with me" are never planned. i've learned that "i think i need an h-u-g" happens so many times a day, and what if i weren't there to give her that. i've learned that both our brains are plastic and that you can teach old dogs new tricks. and we've learned to help each other know when we need a break. know when to move on. know when to say "i'm sorry" and when not to.
so for us, the journey is worth it- there has been much blessing- and what seemed last year like the end of my world- became the most surprisingly beautiful beginning.
Sunday, May 9, 2010
mothers day
10 years ago, i had my first mothers day. zoe made me a mother. all 5# 3 oz, 16 inches of her. fuzzy black hair and all. today, she made me breakfast in bed and wrote me this card.
" Dear mom- you smell like a rose, you taste just so sweet. i love you (heart exclamation point) love, zoe."
i have no idea what her poem means but i LOVED it! it was unsolicited. it was unsuggested. i even came down in the middle of her preparations and she simply said, " mommy, you should go back to bed." it didn't ruffle her feathers. and so i did.
and it made the whole year worthwhile. because i know how much she doesn't like to write. and how hard she is on herself to get it just right. and that it could have made her really upset that i came downstairs before she came upstairs. or that she couldn't make eggs or coffee, but had to do cereal and milk.
but- she did it all. the food, the attitude, the card, the internal stability, the ego strength, the independence and the pride in knowing that she made my day.
and she did.
" Dear mom- you smell like a rose, you taste just so sweet. i love you (heart exclamation point) love, zoe."
i have no idea what her poem means but i LOVED it! it was unsolicited. it was unsuggested. i even came down in the middle of her preparations and she simply said, " mommy, you should go back to bed." it didn't ruffle her feathers. and so i did.
and it made the whole year worthwhile. because i know how much she doesn't like to write. and how hard she is on herself to get it just right. and that it could have made her really upset that i came downstairs before she came upstairs. or that she couldn't make eggs or coffee, but had to do cereal and milk.
but- she did it all. the food, the attitude, the card, the internal stability, the ego strength, the independence and the pride in knowing that she made my day.
and she did.
venturing outside the comfort zone
i have really great friends. i have a really great family. they put up with me. with my goings on. and on, and on. i was up for 2 hours in the night- that evil time from 2-4 when all logic is out the window and my half-asleep brain, lets my emotions/ fears/ and what ever else wants to join in, govern me. i must have been dreaming about brain balance- about zoe in some therapy- and i awoke feeling like i was being "taken" by this whole brain balance thing. that it must be a hoax. a money-making gimmick. so i lay there, alone, as mike was out of town, in fear. nothing felt right. brain balance or not doing brain balance, it just all felt wrong, which should have been an indicator to roll over and go back to sleep or go get a benadryl, but i just lay there, mulling it over and over. ( a little sticky, the apple doesn't fall far).
in the morning, i ran to my computer to dig up whatever "proof" i could come up with about how ridiculous the whole thing is. about the quackiness of it all. to relieve my type A, medical doctor, analytic left-brained mind, that in fact, yes- i'd solved the case and it was a farse. and when i'd found a few articles validating my stance- i got on the phone. i talked and talked. i pleaded my case. i wanted to find someone to agree that this is crazy. that i don't need to drive to roswell three times a week. that i don't need to change our diet drastically. basically that my summer can be sitting at the pool, or doing fun activities and eating lots of sugar and carbohydrates and milk. but perhaps the scariest of all- that if we do this- my summer will be a risk. and what if it doesn't really work.... and then we've tried everything, and where does that leave us? where is the hope in that? or perhaps it's that i've spent years, getting to a place where i'm Ok with who she is, with who she's not, with not being in control, with not fixing it. and suddenly it's about control. it's about diet, and vitamins and amino-acids and supplements. and ironically, the control part is scary.
so after my restless night, i was about to pull the plug. i was about to call and say no. this is too out there for me, this is not in my comfort zone. i need to have my summer. i need to wait. i need pastries, donuts and milk. just before i called, i decided to call the woman who'd first mentioned it to me. the woman who i've never met, who'd read the blog, who'd contacted me and said i should look at brain balance. a woman who has a "zoe". a woman who gets it. and she answered and we talked. she too had been skeptical. she too didn't want to make a big diet change. but she too wanted the best for her girl and nothing else had proven to do it, so she'd drank the kool-aid. and for her it worked! not a 'cure' - but big improvement. improvement that other people noticed, who didn't know they'd changed anything. and that for me, was enough. it was enough- to not abort mission. enough to start the drive to roswell. enough to try it.
so we'll await the blood test and results. we'll follow what they say- for three months- and we'll hope and pray that her brain will become more balanced. that things will make more sense - will come easier. that life won't seem like such a mystery.
so while i'm staring nervously at a giant bottle of fish oil - unopened- i'm excited to try. excited by the hope, that what has worked for others - could work for her. that non-traditional approaches will teach this western doctor to think outside the box (and the literature). because really, i'm imbalanced too. so governed by the left brain. right brain deficient. so maybe after three months we'll both come out better.
we start tomorrow- away we go.....
in the morning, i ran to my computer to dig up whatever "proof" i could come up with about how ridiculous the whole thing is. about the quackiness of it all. to relieve my type A, medical doctor, analytic left-brained mind, that in fact, yes- i'd solved the case and it was a farse. and when i'd found a few articles validating my stance- i got on the phone. i talked and talked. i pleaded my case. i wanted to find someone to agree that this is crazy. that i don't need to drive to roswell three times a week. that i don't need to change our diet drastically. basically that my summer can be sitting at the pool, or doing fun activities and eating lots of sugar and carbohydrates and milk. but perhaps the scariest of all- that if we do this- my summer will be a risk. and what if it doesn't really work.... and then we've tried everything, and where does that leave us? where is the hope in that? or perhaps it's that i've spent years, getting to a place where i'm Ok with who she is, with who she's not, with not being in control, with not fixing it. and suddenly it's about control. it's about diet, and vitamins and amino-acids and supplements. and ironically, the control part is scary.
so after my restless night, i was about to pull the plug. i was about to call and say no. this is too out there for me, this is not in my comfort zone. i need to have my summer. i need to wait. i need pastries, donuts and milk. just before i called, i decided to call the woman who'd first mentioned it to me. the woman who i've never met, who'd read the blog, who'd contacted me and said i should look at brain balance. a woman who has a "zoe". a woman who gets it. and she answered and we talked. she too had been skeptical. she too didn't want to make a big diet change. but she too wanted the best for her girl and nothing else had proven to do it, so she'd drank the kool-aid. and for her it worked! not a 'cure' - but big improvement. improvement that other people noticed, who didn't know they'd changed anything. and that for me, was enough. it was enough- to not abort mission. enough to start the drive to roswell. enough to try it.
so we'll await the blood test and results. we'll follow what they say- for three months- and we'll hope and pray that her brain will become more balanced. that things will make more sense - will come easier. that life won't seem like such a mystery.
so while i'm staring nervously at a giant bottle of fish oil - unopened- i'm excited to try. excited by the hope, that what has worked for others - could work for her. that non-traditional approaches will teach this western doctor to think outside the box (and the literature). because really, i'm imbalanced too. so governed by the left brain. right brain deficient. so maybe after three months we'll both come out better.
we start tomorrow- away we go.....
Tuesday, May 4, 2010
the understanding 5000
one of the hardest things about being a parent is knowing is what is best for your kid. i mean- should they do soccer and t-ball, or ballet, or piano- or all of it. but when you have a kid with special needs or learning challenges- the plot thickens. not only do you have the challenge of what they "should" do (and what they "can" do) in the "regular" world- but you need to decide what therapies they "need" or should do. i put that in quotes because there is no formula. at least not that i've found. there are different schools of thought. ABT- applied behavioral therapy vs. floortime. do you do OT or PT or both? do you do sensory integration work with Tomatis or OT, or both? do you do vision therapy? social groups? what about hippotherapy? what about cognitive behavioral therapy? or medications? do you go gluten-free? casein-free? supplements? do you put your kid in a "special school" or with "typical kids"? how do you make these decisions? who do you listen to? do you really know your kid? does an expert know better? who synthesizes all this? is there any data out there to support any of it?
believe me, i wish i could answer that. i wish i could give you the latest updates on the therapies- a break down of who does what and what works for who. instead it seems to end up being a lot of trial and error. a lot of "well if it worked for him maybe it will work for her." a lot of options and not a lot of clarity. so you do your best. you try to know your kid and see what "makes sense" what sounds good- what sits well.
and sometimes you try it anyway. even if your totally not sure - even if you're not sure how it sits. because it's your kid. and what if it really does work? that is where we are right now. about to embark on a summer of "Brain Balance". not sure if it really makes sense. pretty sure i'll be cursing myself driving back from roswell three times a week at 4:30 (i'll try my best not too). shocked at myself for trying "the diet" for the summer. (zoe currently lives on carbohydrates and milk- should be fun.) but like i said, no one convincingly knows what "works". we've been in OT/ PT for most of her life. she's done social groups for years. we've tried mainstream public school and two other "special schools". she's done mainstream camp and special camp. she's seen psychologists and psychiatrists and been on meds. has it helped? yes. what has helped? who really knows. maybe it's a committed extended family. maybe it's the knowledge that we won't give up on her. maybe this gives her hope. i don't know. we're more than half way through her childhood. 7 -8 years left. so you do these things- because you love her. because if listening to one type of music, in one ear will help balance a clearly unbalanced brain- then i'll try it. because i want so badly for her world to be easier. for her future to get better. for the fog in her head to clear.
this week has been tougher than last. yesterday she was frustrated coming from her weekly school visit. she said things have changed there and it's hard for her. she had a hard time understanding what the kids were saying to her. she wanted it to not be so hard.
but - she didn't yell, she didn't get stuck in a spiral. she just talked - granted a little circularly - but she got it out. she wanted to be understood.
"did you feel like this when you were 10?"
"kind of"
"it makes me feel alone."
"i know- everyone feels alone sometimes. that i understand."
i went in to pick up the boys and when i came to the car, she said she had a great idea. she suggested her dad build her a robot called "the understanding 5000" that can follow her around and tell her what people mean and how she should respond. it was kind of funny. it was kind of sad. but- it's progress. insight. becoming real. she recognizes there is a need. she wants to learn this. she's willing to.
i say we have 7 or 8 years with her, but really in someways it's less and more. because in a few years she might not be interested in eating casein free, or talking to a therapist. she might get sick of doing OT. and in someways we'll probably check in on her in her early adult years - more so than other grown kids.
so we seize the day. the moments that we can. the times when the ground is fertile, the brain plastic, when she wants to get it. and perhaps the clouds will part. others faces will make more sense. her filter will strengthen. and her years will become easier. and if not, mike will have to get to work building "the understanding 5000."
believe me, i wish i could answer that. i wish i could give you the latest updates on the therapies- a break down of who does what and what works for who. instead it seems to end up being a lot of trial and error. a lot of "well if it worked for him maybe it will work for her." a lot of options and not a lot of clarity. so you do your best. you try to know your kid and see what "makes sense" what sounds good- what sits well.
and sometimes you try it anyway. even if your totally not sure - even if you're not sure how it sits. because it's your kid. and what if it really does work? that is where we are right now. about to embark on a summer of "Brain Balance". not sure if it really makes sense. pretty sure i'll be cursing myself driving back from roswell three times a week at 4:30 (i'll try my best not too). shocked at myself for trying "the diet" for the summer. (zoe currently lives on carbohydrates and milk- should be fun.) but like i said, no one convincingly knows what "works". we've been in OT/ PT for most of her life. she's done social groups for years. we've tried mainstream public school and two other "special schools". she's done mainstream camp and special camp. she's seen psychologists and psychiatrists and been on meds. has it helped? yes. what has helped? who really knows. maybe it's a committed extended family. maybe it's the knowledge that we won't give up on her. maybe this gives her hope. i don't know. we're more than half way through her childhood. 7 -8 years left. so you do these things- because you love her. because if listening to one type of music, in one ear will help balance a clearly unbalanced brain- then i'll try it. because i want so badly for her world to be easier. for her future to get better. for the fog in her head to clear.
this week has been tougher than last. yesterday she was frustrated coming from her weekly school visit. she said things have changed there and it's hard for her. she had a hard time understanding what the kids were saying to her. she wanted it to not be so hard.
but - she didn't yell, she didn't get stuck in a spiral. she just talked - granted a little circularly - but she got it out. she wanted to be understood.
"did you feel like this when you were 10?"
"kind of"
"it makes me feel alone."
"i know- everyone feels alone sometimes. that i understand."
i went in to pick up the boys and when i came to the car, she said she had a great idea. she suggested her dad build her a robot called "the understanding 5000" that can follow her around and tell her what people mean and how she should respond. it was kind of funny. it was kind of sad. but- it's progress. insight. becoming real. she recognizes there is a need. she wants to learn this. she's willing to.
i say we have 7 or 8 years with her, but really in someways it's less and more. because in a few years she might not be interested in eating casein free, or talking to a therapist. she might get sick of doing OT. and in someways we'll probably check in on her in her early adult years - more so than other grown kids.
so we seize the day. the moments that we can. the times when the ground is fertile, the brain plastic, when she wants to get it. and perhaps the clouds will part. others faces will make more sense. her filter will strengthen. and her years will become easier. and if not, mike will have to get to work building "the understanding 5000."
Saturday, May 1, 2010
fairy dust
this was a good week. for me and for zoe- they usually go hand in hand. it was a week when life feels really good. when i'm filled with hope. when i see her moving on, growing up- someday leaving me.
if only we could find that magic ingredient. that fairy dust that must fall on her head some nights. what is it that makes a good week? or day? is it weather? something she ate? or didn't eat? a good night sleep? random neuro-chemistry? is it that i'm in a good place and it rubs off on her? if only i could figure that out.
we were at a function tonight-for her best friends school- up at the lake claire land trust. a wonderful hippyish land of gardens and animals and drum circles and happiness. a place that zoe knows and sometimes goes to childcare. a place where she feels safe and accepted. but tonight it was filled with potential meltdown- filled with the ingredients that tend to brew stickiness. a large social gathering with people her age- her best friend and all her best friends other friends who she doesn't know. a landmine of possible jealousy and "why didn't i know her, why can't i do that, why don't i get that joke..." there were even hula-hoops- a big motor challenge for her- a great source of meltdown. there was a time when i would have avoided this event completely. and if we went, i would have been so stressed, and uncomfortable that i wouldn't have had any fun. i would have been waiting. anticipatory fear. for her to fall to bits. for that perfect storm and the embarrassment and turmoil that follows.
but not tonight. tonight she did great. she had one little moment of frustration- but overcame it quickly. and she had fun. she danced. and she pulled away when she needed to- and found an adult to talk to - to regroup. that is amazing. being there and finding herself- knowing her take on things is different, but that different is OK.
and i was OK. i was able to let it go- to not spend every minute worried about where and how she was. not feeling the need to save her. maybe my trust in her- my allowance to just "be" is freeing to her as well as me. maybe that is the fairy dust.
while the band played and the kids ran, i went into the "clubhouse" to get some lemonade. i was feeling so thankful for the evening, the day, the week that we'd had. thankful for her, and our family, and this venue. and there on the wall was a hand painted sign. it said "Be Still and Know".
i smiled, looked up, and felt some fairy dust fall.
if only we could find that magic ingredient. that fairy dust that must fall on her head some nights. what is it that makes a good week? or day? is it weather? something she ate? or didn't eat? a good night sleep? random neuro-chemistry? is it that i'm in a good place and it rubs off on her? if only i could figure that out.
we were at a function tonight-for her best friends school- up at the lake claire land trust. a wonderful hippyish land of gardens and animals and drum circles and happiness. a place that zoe knows and sometimes goes to childcare. a place where she feels safe and accepted. but tonight it was filled with potential meltdown- filled with the ingredients that tend to brew stickiness. a large social gathering with people her age- her best friend and all her best friends other friends who she doesn't know. a landmine of possible jealousy and "why didn't i know her, why can't i do that, why don't i get that joke..." there were even hula-hoops- a big motor challenge for her- a great source of meltdown. there was a time when i would have avoided this event completely. and if we went, i would have been so stressed, and uncomfortable that i wouldn't have had any fun. i would have been waiting. anticipatory fear. for her to fall to bits. for that perfect storm and the embarrassment and turmoil that follows.
but not tonight. tonight she did great. she had one little moment of frustration- but overcame it quickly. and she had fun. she danced. and she pulled away when she needed to- and found an adult to talk to - to regroup. that is amazing. being there and finding herself- knowing her take on things is different, but that different is OK.
and i was OK. i was able to let it go- to not spend every minute worried about where and how she was. not feeling the need to save her. maybe my trust in her- my allowance to just "be" is freeing to her as well as me. maybe that is the fairy dust.
while the band played and the kids ran, i went into the "clubhouse" to get some lemonade. i was feeling so thankful for the evening, the day, the week that we'd had. thankful for her, and our family, and this venue. and there on the wall was a hand painted sign. it said "Be Still and Know".
i smiled, looked up, and felt some fairy dust fall.
