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.