in accordance

i don't know when exactly i dedicated a space in my brain to the idea of living in accordance with ones values, and more specifically all of the ways that i (and those i observe around me) violate that relationship, but it's been at least a year or so. not that the idea that one should try and live this way only occurred to me one year ago, but it has it's own dedicated space now. it's no longer a fleeting and vague philosophy, it has become a crucial part of how i conduct myself. it was one of the major factors in our cross country move last summer, and it is center stage for my recent (albeit tentative) plan to transition to not just vegetarianism, but to becoming vegan. STOP. wait. I'M NOT THERE YET. there is still cheese in my fridge, and milk on my breath. as of today however i am committing to no longer buying meat products for anyone in my house (yes, there have been family discussions and consensus), and to not buying any new dairy products for myself. for awhile now my kids and i have been discussing the animal rights side of becoming veggie in some form or another. we are animal freaks to the core in our house, and when we talk very honestly about the relationship between being animal lovers AND meat eaters, there is no real honest justification. we are not living in accordance with one of our most treasured family values. why? for an occasional chicken finger or creamy piece of cheese? yes. that's why. we have said that the rights and lives of all living creatures are important to us, but our actions have drawn a big red line through that statement because ultimately we have prioritized our habits over our beliefs. it's shameful, and so very common. in fact i think the commonness of this separatist way of living is what really helps us justify it.

another piece of this puzzle is our families individual and collective health. as the leader of our household i pride myself on providing genuinely good wholesome foods to my family. we have been organic before organic was cool, and we avoid any and all high fructose corn syrup, hydrogenated oils, and crazy-ass food dyes. my kids have always lived this way, they have been able to identify certain "bad" ingredients on a food label since before they could read. additionally i am a really good cook, i have never been someone who will eat something JUST because it's good for me, it has to taste good too. i have learned that it is possible to make almost anything taste pretty damn good if you know the methods and trust your culinary instincts. personally i haven't eaten red meat since i was 19, and i was a vegetarian for several years during my 20's. even now i eat far less meat than most meat eaters i know. it rarely finds it's way into my shopping cart; and still i haven't made the commitment to fully transition to a plant based diet. little g and i both have acid reflux regularly, in addition to other GI issues. z. has sensory integration dysfunction, autism, and (despite it being normalized by doctors) very early puberty in my opinion. all of these daily health concerns can be traced back either wholly, or partially, to our diet rich in dairy and animal products. at the least our diet can exacerbate these issues, at the most i fear it is actually causing some of them. it's interesting because when z has food dyes she inevitably has a meltdown within 2 hours. she loves her sugar, and if it's blue or pink or bright red, all the better in her eyes! but i can count with 100% accuracy on her mood for the remainder of the day. i find that fascinating. what specifically is happening inside her body to cause that reaction? the same is true for me with my allergies when i have a lot of cheese.

now i must confess that i am someone who gets on a kick with this, that, or the next thing and tends to go whole hog (pun intended). which is why i have been gently reading, pondering, and exploring this whole plant based diet thing for months now. i have talked myself in and out of it several times, but it keeps popping up around (and within) me with a resonance that is difficult to ignore. this all or nothing mentality is also something i have learned to be wary of as it hasn't served me well in the past, so i am slowly transitioning. i'm replacing cow milk with almond milk (shockingly good, and this from someone who does not like soy milk at all!), butter is giving way to earth balance, sour cream to tofutti, and cheese... well, cheese is just going to have to fade into my past like a lover that did me wrong and no longer works in my life; because i think the vegan "cheeses" that are on the market are disgusting and insulting to a cheese lover like me. :-) becoming ok with letting go of my creamy love is a process, but i am confident that i can be happy even without it in my life.

this life is a short one and it is my intention to live as honorably as possible. there are so many things happening in this world that i have little or no control over, but which distress and worry me a great deal. war, famine, abuse, neglect, corruption, murder, natural disaster, and devastating environmental issues just to name a few of the things that make me want to crawl in a hole and sleep the time away. this is another reason that a plant based diet will help me to live in accordance with my values. it is, i think, one of the most impactful decisions i can make to start becoming more a part of the solutions versus the problems i see in the world around me, and to move even closer to aligning my values with my daily way of life.

persevere (rate)/ (ration)/ (ating)

persevere: to persist in a state, enterprise, or undertaking in spite of counterinfluences, opposition, or discouragement

perseveration: continuation of something (as repetition of a word) usually to an exceptional degree or beyond a desired point.

(merriam-websters dictionary)

"persevere" is an interesting word. in it's various forms it's meaning can change drastically. when one is struggling we are encouraged to persevere through the tough times. change that a little to perseverate and the connotation changes as well. to be honest, i didn't hear or use the variation "perseverate" much before my oldest daughter came along, now it's not only something i hear OFTEN, but i'm encouraged to persevere in discouraging her perseverating by medical and school personnel. it feels like the world says, "shut down. get going! knock it off. keep it up! time-out. get in the game! sit still. chin up!" it's exhausting, make up your fucking mind already.

as my blog pretty clearly tells you, i have a had bit of an ass-kicking year. not ass-kicking as in "that was awesome, it kicked ass!", but rather "why is that woman lying in the fetal position? oh, she got her ass kicked." (it's ok to laugh, it's funny. god knows i laugh at my ridiculous life often enough). these series of events that continue to unfold around and within me lead me to wonder whether i am, or should be, persevering or perseverating?

prime example, i am going focusing my energies in the moments, minutes, or hours between crisis management this week on tapping the maple trees in my yard to make my own syrup. i have never done this before, and so it requires learning and concentration on my part, both of which are good distractions and avenues towards persevering. this activity will serve many positive purposes in my life right now, it will get me outside, teach me something new, and result in providing my family with a connection to this earth as well a healthy product we use often. i have spent hours reading, researching, and calculating the benefits of making my own syrup; it will reduce my carbon footprint, be cheaper than buying the stuff for a bajillion dollars for a qt, and it will be fun and educational for my kids. i was thinking about it as i fell asleep last night, and i began compiling my list of needed supplies first thing this morning. am i being prepared and tackling this responsibly? sure i am *she says tentatively with doubt in her voice*. however, if my 10 year old autistic daughter (z) were focused this much on one thing, whether at school or at home, she would be considered to be perseverating and redirection would be the first order of business. we tell ourselves that this redirection would be necessary to keep her mood more stable an prevent her severe anxiety from settling in for a good long while. but here's where it gets sticky, i am overwhelmed and anxious about this syruping business too. i am doing it for all of the reasons i mentioned above, but i am also doing it to distract myself from the rest of my life and give me something tangible to focus on. if everything goes according to plan and i make some yummy sweet syrup, then yay for me- i accomplishment something positive. if the learning curve for this activity has some unexpected detours and the syrup gets all jacked up and inedible i fear a total nervous breakdown in my near future. i'm putting a lot of eggs in this basket of maple sap, if you know what i'm sayin'. i'm relying on this activity to give me a sense of purpose when my life feels overwhelming, how is that different than z wanting to know every little thing her class will do, at what time, and in what way on a monday morning so that her week feels less overwhelming? it's not different. at all.

in my perseverance i am perseverating so that i may accomplish this goal and will then be inspired to persevere. when i break it all down like this i think a.) this is riDONKulous, and b.)i'd rather take a nap than do any of it. i would rather succumb to the overwhelm than risk the possibility of failure and meltdown. maybe that's the key difference between my perseverance and z's perseverating, for me persevering is something difficult that requires i maintain great focus to do. for z, it's like breathing. she doesn't require a self-given pep talk to latch onto an idea and run with it, but i do. suddenly it feels like i am the one who needs redirection, maybe i should ask z what to do?

the new black...

it seems that comings out of all sorts are just destined to be a regular part of my life. so here comes another one. my daughter izzy is autistic. of all my comings-out this one is the most difficult. i don't like saying it, i don't like it being real. her particular diagnosis is PDD-NOS on the ASD (i know). that means pervasive developmental delay- not otherwise specified on the autism spectrum. what it really means is that on the spectrum of autism you have on one end, the traditionally autistic (non-verbal etc...) on the other end you have aspergers (high functioning autistic- usually really smart about one particular area), and then in the middle you have PDD-NOS which is a very vague diagnosis that can vary significantly from person to person and it pulls from any and all parts of the autism spectrum. a person with PDD-NOS can have any combo of autistic features, and often their diagnosis are co-morbid with other diagnosis. for izzy it is a litany of anxiety disorders. any way you spell it, it's a mouthful. slowly over the last few years we have been coming to terms with what this means for the big picture of her life and the small picture of our daily life. we have been hesitant to share this with the people in our lives because we don't feel like we are on sure footing with it ourselves and it often sparks a lot of questions, conversations, and various looks of pity, concern, disappointment, and confusion. dana and i are both blessed with the gift of sarcasm and we often joke that "autism is the new black". it seems every time we turn on the news or open a magazine there is something about it staring us in the face. these are the questions people usually have for us upon learning about izzy: do you think it's the vaccines? do you know what caused it? how did you get her diagnosed? how does she do in school? does she take medications? have you tried __________ therapy? did you read__________ article/book? did you see oprah? and on and on. don't get me wrong, i appreciate all of the care and concern behind these questions and often it's helpful for me just to get to talk about it. but it's hard not to feel like i'm doing something wrong, or i did something wrong to be among the masses who are learning that their children are ASD (autism spectrum disorder). and i don't know the answers to many of these questions, this is what i do know: i don't know if it's vaccines, so far research says no, but i can't really say. she was diagnosed about 2 years ago by a neuro-psychiatrist that we waited over a year to get in with because she is known as a conservative diagnoser who believes too many kids are being placed on the spectrum. her diagnostic report, after all of the testing, was beautifully done and i feel like the only time i've read something (written by a doctor) about my daughter that really encapsulated all of her. she does ok in school, she has an IEP and a lot of help. she loves going to school. yes, we've tried a lot of therapies, some help, some don't. there are too many for one family to try them all. i've read a lot of books and a lot of articles, and yes i saw that oprah. :-)

i'm sure you all remember when adhd was "all the rage". i know i do. i was a non-parent back then and i often judged the medical profession and sometimes the parents who seemed to be so content to diagnosis and medicate their children. it's just so easy to listen to soundbites and see a few people debate an issue on a tv show and form an opinion that, unless you're someone directly affected, you have no right to form. now i find myself stuck in the middle of the soundbites and my daily life. i'll be honest, autism is a bitch. although i know and accept that this is a part of my izzy, sometimes i fragment it. separate it. compartmentalize it, as a way to remove it and manage it. some days i parent izzy, georgia, and autism. all individuals. i don't want to label her or box her in. some days it's not so bad, she just seems like a quirky funny kid. other days, the autism takes over and i can hardly see my girl in there. those days are excruciating. i am home alone with the kids most of the time, which can be isolating in it's own right. throw into the mix a kid who has social issues and severe and debilitating anxiety and your days can become an island. izzy wants to play with typical kids, but they don't often want to play with her. and trying to get autistic kids to play together, well, let's just say that can feel like trying to swim on dry land. it's hard to watch the neighbor kids run off and play together and leave my kids behind. i understand it, but it's hard. made more difficult by the fact that izzy doesn't understand. she just wants everyone to like her and talk to her about the foods they ate that day and to listen to her read her captain underpants books. i can see the confusion and hurt on her face when others don't want this. especially kids. she has a lot more success with grown-ups. they find her very charming and funny, because she is. that kid says some of the most insightful, funny, wacky things i have ever heard. i believe that there is good that comes from struggle, and the nuggets of humor and wisdom that fly out of izzy's mouth are the good in autism. if she were typical, i would of missed out on a lot of good stuff. one of my favorite izzy stories is when she was getting her haircut at great clips in uptown. she LOVES to get her hair cut because she has a captive audience to chat at for 30 minutes. last march as she was chatting away, michelle (our favorite hair lady) was combing out her fro. her hair was parted down the middle and fully combed out on each side. izzy paused in her chat-rant long enough to look up into the mirror at herself and in a totally spontaneous moment she loudly exclaimed: "OHMIGOD! i look just like george washington!!!" silence fell over the salon for a half of a second and then everyone busted a gut laughing. it was so cute and charming, and oddly enough everyone could see what she meant. despite the fact that she is an 8 year old bi-racial girl, she did kind of resemble george, but only she could see it enough to say it. as everyone was laughing, izzy looked over at me and said, "did i make a joke mommy? was it ok?" that sums up autism for me. she said the most perfect one liner, but doesn't even understand what a joke really is without being told 'this is a joke'. knowing me you should be able to guess how hard that can be on a daily basis. i am constantly cracking jokes, consequently izzy follows me around saying, "you're just saying that, it's a joke, i know it's a joke". don't get me wrong, she laughs at jokes, but not usually until verified as such.

we recently had a talk with izzy and explained to her what autism was and how it affects her. we told her it's a word to describe the ways that her brain works differently. she said, "oh. au-tism. that's a cool word. can i watch a little something?" (she loves movies) since then when features of her autism begin to come out we point out to her, "this is a part of your autism honey, it's ok" we want to give her language for her struggles and we want to demystify this word for her as she will no doubt hear it a lot over her lifetime.

as for me, it's very difficult for me to share this information about my daughter. doing so makes her, and our whole family, vulnerable. but i have been finding myself unable to reach out a lot to other people, even just here on this blog because i am living in autism world and very few people know it. a lot of what i want to write about is how autism trickles out in a family beyond the one diagnosed. what it feels like to try and find the balance of getting your child the help she needs, while fighting not to become the poster child yet again. we are realizing that secrecy is not the right answer either. so i'm going to talk about it. it's not all i want to talk about, some days i would rather talk about anything else. but having the option is a good thing.