Wednesday, September 03, 2014

Always Another Turn

We began our homeschooling path as unschoolers. Radical unschoolers. But as with most things I start with great passion time tempered my initial feelings and we moved into spaces that were not so easily labeled. We've never been schooly. There were never lesson plan books or school at home desks. There were suggestions and plans along with math curriculum. On a sunny crisp fall day schoolwork was eschewed for long walks through the woods or sometimes a surprise trip downtown to whatever city we were living in at the time. Things on a list can always get always get done is what I learned, and if they don't, the world is not going to come crashing down. This might seem obvious to you but for me it was a lesson.

I am a woman who lives on lists. I used to think I was "scatterbrained" but I now suspect I might have a different brain that just functions divergently. But lists...well lists kept me focused. I wouldn't have finished my degrees (and both of those took an incredibly long time to complete) if it weren't for the lists I made up every morning along with my coffee. These lists littered my life, to do marked clearly on top with lines through what had been done although sometimes I forgot to do the lines.

To Do:
clean up kitchen
feed cats
write journal for Alice
go to class
library for research and books
takes notes for Jennifer's paper

H and I did our Masters with three small children. They were five and under when we began. We also started our homeschooling road at the same time. Our house was a happy chaos in those days. Papers everywhere. Books piled high on end tables. Our kids were more comfortable on college campuses then they were in classrooms. We read picture books in between our daily does of Foucault and Butler. Camille learned to untie shoes by hiding under the table in a conference room as my favorite professor and adviser lectured on theories of religion. They articulated complex thoughts about God and nature because they overheard H and I talking about these things. I still look back over those times with a fond eye...and oh the lists. They were there, coming and going as I moved through the complexities of thesis writing and through doubt about unschooling. They had become computer files at this point, and they still haunt me as I go to open documents.

When we moved to Athens, things shifted every so slightly in that I became a full time stay at home mom instead of a part time one. I spent a couple of years in a fog trying to figure out what this meant. My too do lists mocked me as I tried to organize my day around things that brought me little joy. Washing dishes does not answer the meaning of life. I focused my meaning on the children's schooling, and my to do list for them became complex diagrams that looked an awful lot like the pages of a lesson plan book. And then I had Jude, and when I decided to homeschool her, I told myself "Now you're going to have get it with it missy." I didn't think I could unschool Jude. The old fears that I'd ruin her crept in as I held her tiny body close to mine while I worried away at those future stones.

A couple of weeks ago, I went out to dinner with some of H's friends, and they started to ask me why we homeschooled, and as I tried to articulate why, I realized with a jolt how far I had drifted from those idyllic days from the past. I told H's friends that we hate how the system shapes children and that we wanted to shape our children with a different kind of ideology. I told them how confident our children had become, how sure of themselves. That what people had kept calling sheltering was actually a safe place to become who they were so that when they left our arms, they were proud of who they were instead of ashamed or beaten down. And as I talked I remembered Camille's only year of school and how shattered she had become and the years it took to heal those wounds left by a few awful people. As I talked I also thought about the books that were cluttering up my shelves, the binders, the lesson plans that were taking over the creamy smooth pages of my Moleskin journals. But the kids need this, I thought to myself confidently. I am just doing what they want.

We started "school" on Monday. I got up reasonably early (for me). I had a to do list for each child. Oh how the list had evolved. Things went smoothly until Camille woke up. I handed her the list and she looked at me askance. I knew resistance was coming and I steeled myself. Things went relatively well until I asked her to write a journal entry on the book she was reading. At first, she resisted silently. Sitting in the corner of the couch curled up around herself. I gave her space and did some things with R. Every once in awhile I'd remind her that she needed to do a journal entry. The tears came next. I looked over to see her silently crying over the journal and book. I sat with her and tried to talk to her about what to write. Finally frustrated I snapped "Do what ever you want. I give up. You're not going to get into college if you don't write." She quietly gathered her things and went to her room. H shoot me a look.

Maybe you should back off. he said quietly.

I sulked. And then thought back to how Umberto didn't really do anything until last year and really didn't blossom until this summer. I thought about my friend's son who was taking college classes at 16 after years of being unschooled. I took a deep breath and then another...Camille wrote for hours everyday. Her fan fiction covered our house in comics and filled screens upon screens on the computer.

Well she does write all the time. I said.

The raging came later as she lashed out against R. H looked over at me and said "We've seen this before."  I went in to talk to her and she was lying on her bed with pages of writing before her and the book. She was trying to make a journal entry. For me. I felt the tears prick on the back of my eyes.

I hate this. she told me.

I rubbed her arm, and said "Then don't do it. Why don't we just talk about it once you're done reading." She nodded and gave me a small hug. I wasn't going to be one of those awful people. Later Camille will remember how light years are described in A Wrinkle in Time. Later we will watch the best of time warp scenes from Star Trek, and laugh over Shatner's hair and debate who was a better captain (Picard of course). And I will sit surrounded by these beings and remember why we began this journey in the first place.

Around this new turn, I find myself staring face to face with the past. We are taking a risk raising our children this way. A leap of faith was what I called way back when Umberto was five. And we have encountered doubts that blocked our way. Umberto wasn't reading at nine and voices were telling us to quick put him in school before we ruined him. There was something wrong. And there was a block but school didn't loosen it up. Epilepsy medicine did the job. A couple of years ago it seemed like all Umberto did was play Xbox, and I was worried. This summer he had to get a second summer reading program list as he had read too many books to list on his first sheet. I am not sure what the future holds for us, and I am sure that in many ways my children will see what we have done as a failure. But I also hope that they will be able to pause and say "Wow my life was pretty interesting and it showed me other ways of seeing the world."

I end this with remembering that time does not march straight ahead. As I rounded that sharp curve on Monday, I came face to face with a wounded six year old who hid from us for a long time. And I was able to hold that child now grown and turn around to see another image. Where we will go this year, I do not know but I do know that what I have created was a way to make meaning for myself. We have to sit down again and find ways that will sustain us all.

Wednesday, August 20, 2014

The Power of Being Wanted

Every night I do something with Jude that I don't do with any of my other children. Every night as Jude falls into sleep, her beautiful lashes brushing her plumb cheeks, her sweet lips puckered out, I whisper into her tiny shell of an ear "You were wanted. Never ever forget that we wanted you." I have done from the first time she feel asleep in my arms until this very day.

Looking back perhaps I should have been whispering to my children these very words. This hit home when I looked at the children being crammed into too small holding rooms. Children who were fleeing the violence in their countries, alone at tender ages. These children sometimes looked like my children. And at that point I began to think about what it means to be unwanted.

This was on my mind as I read as the first flurry of news items about Baby Gammy began to come across my screen.  While the information surrounding Baby Gammy is filled with contradictions and the usual he said, she said, it is undeniable that Gammy's biological parents saw little use in the twin with Down syndrome. So they left him and took the sister who did not have Down syndrome. The pain of this action cut me deeply as the mother of a little girl with Down syndrome. At first, I focused on the issue of surrogacy as a business in developing countries, a kind of repulsive medical tourism laid out on women's bodies. And this is an important issue, and perhaps one of the main issues that ought to be focused on as this conversation continues. But as the days pushed forth, and more news came out, including the horrid interview with the biological father, I couldn't turn away from those words I whisper to my daughter--I want you-- and reflect on why I must say them to her and why I say them to my older children in different ways. Why I must push away with the softest hope of promise what the world seems to be telling me about  my child with Ds; about my Latino/a children. 

And then a cop shot Micheal Brown and the world exploded.

From across the Continent two stories collied on my horizon; and in a dream the collision of these very different things lit up the sky. I woke up with the words "I want you..." on my lips. You see, Michael Brown was wanted by his mother, and he meet death at the hands of someone who very likely didn't want him around--who saw him as a nuisance who needed to be erased. Today I read the comments in a vigil I partook in about how Brown was a bully and a thug and was likely very (un)missed by those he bullied. I have read about how he was someone who would have come to this end in the long run. "I want you..." I hear in the sobs of his mother, of her stories about her son's plans for the future. And I watch how the news tries to use those plans as a way to make a case for murder. But it's murder even if he was all those awful things people say, right? Proving worth...but only some of us have to prove worth. And that is where "I want you..." comes to be a statement that reveals bias.

I am aware everyday that most people wouldn't wish for a child like mine. When people find out that they are not carrying a fetus with Down syndrome they say things like "It's okay!" "We're safe!" And people tell you "I don't care about gender as long as it's healthy." I have had to leave parenting groups filled with very nice people because they describe getting a high risk on a blood test as a "Scare." Sometimes in my darkest moments, I wonder if all the people who love Jude would even want a child like Jude. I hear it sometimes when people say things like "You're so brave." and "I don't know if I could do it." What I hear is "I'm glad it's not me." 

Sometimes I even say it when I say "Not everyone could raise a child with Ds" as a way to think about abortion. 

Today it came shattering down around me. I read Dawkins' horrible words about fetuses with Down syndrome. According to Dawkins' it would be immoral to carry a fetus with Down syndrome. After all they don't contribute anything to society (one could make the same argument for Dawkins but I won't sink as low as that scum). And as I nursed my girl to sleep, I sobbed into her hair. Sobbed because it's not the first time I had seen such things said about people with Down syndrome. Sobbed because I know that this is not just one asshat's opinion but the opinion of whole societies. I know this because the abortion rate for fetuses with Down syndrome is painfully high. I know this because when people with Down syndrome are beaten or killed by the police or by people acting like the police, there is so little outrage. Instead it is hinted in hushed tones that perhaps this was the best thing. After all what future did these people have, really?

I have often tried to write about how I reconcile being pro choice with being anti-eugenic and I never get it quite right. I suspect I won't get it right this time but I am going to put this out there. When prenatal testing is marketed as a way to rid people of unwanted birth defects, we have eugenics. Prenatal testing as it is offered now is being offered as eugenic tool. When someone like Dawkins suggests that there is an idea of perfect or that a parent can should screen their fetus in order to choose the most perfect child, we are falling into the world of eugenics. Because the idea of testing as a screen to weed out what is undesirable is dangerously close to an idea of a master race. It is the promotion of a dangerous idea about how some people might know what it means to be a superior person, a superior race. And that should have us frightened.

And this is ultimately what the difference is for me between being pro-choice and anti-eugenic. I am utterly against infringing on a women's right to choice. But if the only choice is to offer a society where her child can be shot down by the police, maligned in the media, not given proper housing, food and education. If it is a world where her child is treated as subhuman, a world where people tell her she was immoral to carry her child, a world where people make memes of her child and mock that child. If it is a world where people casually drop slurs about her child and then defend their words as if they mean nothing..what kind of choice are we really offering? The reality is that we must fight eugenics in the ways companies word their tests, the way that genetic counselors tell parents of their options, the way that Drs. treat our children. We must fight eugenics at the government level by demanding the best education for our children which is clearly to be found in inclusion. By insisting that our children deserve to have saving accounts which can help them survive after their parents are gone and allow them an independent productive life. We must fight for our children to have meaningful and engaging work surrounded by other people. Eugenics does not begin and end with abortion, I am afraid, it extends into the lives of babies who are left behind (thankfully to loving parents), into lives taken too soon because value was not seen, into the words of those with influence. 

Every night until I no longer have the right to do so I will whisper to Jude "I want you. Never think think that I didn't want you..." and I hope that someday she will whisper to herself "I was wanted. My parents wanted me. My siblings wanted me. My friends wanted me. The world wants me." 

Tuesday, August 19, 2014

Another Trip Around The Sun

I woke up this morning with a foot in my face. An adorable foot grant you but a foot nonetheless. It's a pretty typical way to start my day. Over the last few months, I have marveled that not once since Jude was born have I ever imagine my life any differently. While this is not the path that I would have chosen twenty years ago nor the path I had envisioned myself, it is the path that has brought me an incredible amount of joy and peace. I spend every day surrounded in love and that is no small thing.

The last year has been intense emotionally. As Jude moved through her second year, I found my views on disability shifting even more as I struggled with ideas about difference and sameness, about how to fit those ideas into a voice that expressed just how amazing Jude was but how her difference did sometimes make things different. And I also struggled to talk about how having Jude changed me not because Jude has some magical powers granted through her extra chromosome but because the process of accepting Jude as is changed something deep inside me. I learned to look at the world in a new way.

The other children grew and changed as well pushing to me change even more. Being a parent, I think, is about change. All the time. Camille did trapeze and we watched as her newly found confidence shown as she swung through the air, twisting her body and dancing with the help of a bar and a rope. Piper shown in trapeze as well taking to this unusual dance form with a naturalness that was breath taking. Umberto has become such a neat , interesting person, finally emerging from his slight gaming obsession to expand his interest in other areas. I am amazed at these bright creative kids surrounding me, and sometimes even ponder how I had such people come from my body.

And of course there has been pain. There's always a bit of pain. On a personal level, I lost some friends. There were a few big blow outs that have alienated me from many different groups. I almost lost a good friend because of my own jealously. I almost shut down the blog but luckily I was able to find my way back to why I started the blog in the first place. Over the last few months, I've become stronger, more sure about what my writing means to me and while I still struggle with envy, it does not cover all that I do. I am saddened by the friends I lost, and am still not sure if I am okay with being alienated from all the major voices in the Ds community but I am learning to live with my mistakes and to just move on hoping that things will work out. And I have also learned that even when the disaster that happens may be painful that sometimes it was the right thing. I have given apologies to those I feel deserve one but have not done what I usually do and apologized for things that I don't really feel deserve an apology.

There was the emerging from a depression that I had been in slight denial about over the last two years.  Depression that was exasperated by my faulty gall bladder. Being sick for 9 months takes a toll on one's emotional life for sure. It also really played out on my eating disorders and lead to some revelations and also a lot of shame. But the good thing was that I realized that my over eating has much to do with emotional pain around ideas about food, my body, and value. In the end, I got the pesky internal organ removed and am feeling so much better. It's nice to eat without fear, and although I'd admit that I've been in indulging in some "not so healthy" foods, I feel zero shame. I'll get back to my normal eating schedule soon but right now it's nice to eat a fry and not feel like I'm giving birth. The other good part that came from all this was that I realized I really do need therapy and am going to get some next month. I feel like I'm making a very important choice in making my life even more livable.

Basically all this is to say that I feel like while the greyness of depression sucked a lot of my energy from me, it also served to let me rest, mull things over, and emerge with some new ideas and plans. It's funny how this thing is both so soul sucking and also affirming. It's why I think I have a hard time writing about my depression. Anyway, I am looking forward to this new year. I have many plans, books to write, posts to blog, new friends to make, old friendships to develop, and the very important work of nurturing the new relationships I've just started. I have things to knit and books to read. I have coming fall park days with my beasties. More love with H, the best husband a woman could ask for. I am filled with hope, even if it is a tentative hope. The world sometimes seems to be exploding before my eyes, and I feel the pain acutely. But it is the love that I feel that fuels me to go forth and say "No more."

Monday, August 18, 2014

The Difference In a Traffic Stop

When I about a month post-partum from having given birth to Piper, I went out for a brief foray to grade papers at the school where I taught. I was leaving that year, and wanted to make sure I left on a good note. On my way home, frantic with worry over my wee baby who didn't yet take a bottle, I was going a little fast. Okay I was going about ten miles over the speed limit which anyone who lives in Charlotte can verify is no big thing. I was pulled over very close to home. The officer who approached my car did so initially with his hand positioned over his gun. This was not surprising considering I was driving an older model Honda Accord in slightly ritzy neighborhood. Once he saw me though, he took his hand off and sauntered over with a smile on his face. He asked if I knew why I had been pulled over and I said "I know, I know I was driving too fast."

"Why the hurry?" He inquired as I finished gathering all the information he needed including my expired Maine licence.

"I just had a baby," I explained looking back toward the backseat where three car seats sat jammed together. "I had to go to my job and grade some papers and I'm worried about her."

The officer looked over my stuff and I saw his eyebrows raise over the license which had expired last year. "I'll be right back." he said, moving back to his car. I waited sick with worry over not just Piper but over a ticket that I knew we couldn't afford, and over the possibility that I was going to be arrested for driving on an expired license.

When the officer returned after what seemed like a half hour but was more like ten minutes, he handed me my stuff with a smile. "I'm going to let you go with a warning on the speeding. But I am going to write you up for the license so that you'll go get a new one. If you get it done in the next month there won't be a fine. You have to go to the courthouse and show that you got your license updated."

After assuring me that I could drive home, I thanked him profusely and went on my way, thinking that the CMPD were actually pretty decent.

But then my husband got pulled over by the same department. My husband who always obeys the traffic rules. My husband who frankly drives like a little old lady. He was pulled over in a "rough" neighborhood on his way to school/work. There were cars passing him the whole time even though he was already going about 7 over the speed limit. He was the one pulled over though, and it will become apparent why. The officer who approached him never took his hand off his gun. He harassed my husband for twenty minutes with questions like "When's your birthday?" "What's your address?" after he had already had his license in his hand. He even went to his car to run the license, and returned it asking the same question. It was clear that he was fishing to see if my husband was undocumented. He snorted with disbelief when my husband explained that he was on his way to teach a Spanish class at UNCC. And in the end, not only was my husband too late to teach his class, he was given a ticket despite his clean record. A ticket so horrendous that he had to go to driving school with a bunch of drunk drivers to get the points removed.

And this is not an isolated incident. Horacio was stopped on his bike for passing a stop sign, something that I notice at least 97% of the bikers in Athens doing (and not motorcycle bikers, bike bikers). He was asked if he was "blind" and given a lecture. He was stopped for supposedly running a stop sign when driving the van even though he was stopped TWO blocks away from the said stop sign (the cop visibly following him). When H had to open the door since the window was broken, he put his hands up, and when the cop, hand on gun of course, pulled up beside him, he was scared as he gestured to the broken window that he was going to be shot.

I hear again and again how if you're compliant you'll be safe. If you are an upstanding citizen you'll be protected. And I look at my husband who is a brilliant PhD student, a teacher of many years, an amazing father, and I wonder why he wasn't protected. Why he was harassed whereas I was let go. And it's not just me who has been let go. We watched a police officer give a breathalyzer test to the preppy albeit slightly scruffy young man who had just hit our parked car so hard that the car was blocking our neighbors driveway. We watched at that young man pretended it was his gum that made the alcohol content too high. We watched as the cop refused to let him drive home. And then when we picked up the accident report we learned that the cop hadn't even charged him with drinking and driving. In addition, we never got any money for the car he destroyed because the kid was driving without insurance. H often asks, "I wondered how things would have gone down if I had been the one who hit the car."

The fact of the matter is that if you are a person of color in this country you are in danger. It does not matter if you comply. If you are upstanding citizen (and please don't give me this bullshit about speeding being against the law), if you're educated, if you're documented, etc. I don't give a shit if Brown really did steal some cigars (which it isn't clear if he did and it is clear that the officer who shot him dead did not even know about the shoplifting incident). I don't care if Brown smoked some pot in his life. I'll admit to shoplifting as a teenager. Hell most of my Wild and Wet nail polish collection was shoplifted from the local Woolworth's. My brother stole all the time, and was even brought home by the police a time or two. I have a few white friends who smoke weed and somehow I don't think most of us are going to get down with shooting pot smokers. In this country if you are a person of color, you are in danger just for being a person of color. When you are not allowed to break the law and face the same consquences as your white counterparts that is racism. You are in danger. Maybe not more danger than someone with a mental or intellectual disability but certainly in as much danger. There is an assumption that if you are different, that if you act in a way that is different, in away that does not immediately acquiesce to obedience than you are fair game.

I am not in a place to write as eloquently as I'd like on this issue but there are several very good bits of writing out there. David Perry, in particular, has written a truly excellent piece on the cult of compliance. I can not recommend it highly enough.

Tuesday, August 12, 2014

Remove an Internal Organ And Life Looks Better

My surgery went well. It was not the best experience of my life has I had been rather hoping it would be. Instead, I had to wait six hours past my scheduled surgery time, and as a likely result of not eating or drinking anything for almost 24 hours,  I woke up a hot mess. I was sick, pale, and needed oxygen for hours afterwards. I was so sick I couldn't go home and had to spend the night at the hospital. There was also not an immediate feeling of awesome, and I spent a couple of days in a fair amount of pain. But I also got to eat a cheese burger and fries, and then some eggs without ill effects. Today, I am finally pretty awesome. I cleaned the kitchen, got trash outside, and even planned some of our homeschooling year. Pretty awesome.

In fact, I'm feeling better than I have in three years. I realized the shift when I gleefully signed Piper for sewing classes. Looking back over the last few days, I realized that despite the post surgery crap, I was excited for the coming year. Not only do I have big plans for the kids but I have big plans for myself. Two novels in the work, one a dystopia and one, a supernatural bit of fluff. I am also thinking about putting together a book with photos of religious places, an academic work on how religion influences perceptions of disability, and I am learning to draw so I can work on a graphic novel. I might not do all these things at once but for the first time in a long while I have big plans.

My problems with recognizing my depression is that it takes so long to get through one, and I have found throughout my life that I don't even seen it until I am finally through the tunnel. And of course there are the false hopes, the moments of light as my train speeds through a pocket of open air before chugging right back into the tunnel. In the last three years, there have been those bits of light, the birth of Jude, seeing Camille fly through the air in trapeze, discovering the unschool for Piper, watching H become an even more amazing scholar, making new friends, discovering hidden places of beauty. Those moments were like life lines that I held onto as I speed through more darkness.

Of course from the other side, I am kicking myself for not getting the help I needed. It was there even for me with my lack of insurance. But instead, I pretended it was okay, and I used those fragile threads of joy as an excuse to just keep sludging through. I ate a lot of chocolate. I slept more than normal. I played stupid games. I watched a bunch of junk T.V. I did a lot of things to numb the pain that feels so constant in my gut. I told myself I had reasons to be sad, and that this wasn't like the other depressions that seemed to materialize over nothing. I did some things right this time though. I did more self care than I normally do. This time I didn't turn to alcohol or to developing bad relationships which created an intensity and drama that made my emotional life pop. I didn't beat myself for eating or gaining weight. I did get out and exercise a bit. I forced myself to hang out with friends. And those things did make this time a lot easier than it had felt before.

But now I'm out and even my mom commented that I was acting a lot more emotionally healthy. I'm out and I have decided that I really do need to seek help on this one. I need to start seeing  a therapist. I need to look into antidepressants again, I need to take care of my self so that when that time comes, and experience tells me it will come again, I am in a place where I am not floundering, questioning if it's real this time. I decided a long time ago that I was going to figure out a way to keep the oven mitts off, to live my life without that dull gray emotional pain that dampened my experience. And I've come really far but I've also come as far as I can on my own.

Postscript: I have no intention of jumping on the Robin Williams band wagon. Or perhaps I should I had no intentions of doing so as this post has been percolating for the last couple of weeks. His death though has coincided with this post which is going to touch upon depression. I am saddened of course as Robin Williams was a funny, wonderful human who brought laughter and goodness into the world. He was human, and he struggled of course with addiction, something not uncommon to those who deal with depression. Whenever our world loses someone whose brightness touched us, it's hard and I think appropriate to grieve that empty space. I hope that Robin Williams found some peace, and I hope that in the end his death might spur someone in that same place into reaching out. And just so don't worry, I am not suicidal and haven't been for many years but I understand that feeling where death feels like a good answer.  If you're depressed, and you need help, please call the National Suicide Prevention Hotline 1-800-273-8255.

Monday, July 14, 2014

Operation Remove Ginger's Gallbladder

I have a whole long eloquent post in my head about this whole mess but it's not been still inside me to get it out. I know there's going to be a ton of judgment and I have to prepare myself for that kind of criticism. I'll save that story for another time.

Right now I am in a place where I need to ask for help. I started a Go Fund Me campaign:

H and I negotiated a price from the hospital of around 11, 000 and we're sent in the paperwork to see who much the monthly payments will be. We have to pay the surgeon up front, and while we can make payment arrangements with the anesthesiologist we can not get a reduced fee. All together this surgery is going to cost us around 13, 000. As much as it hurts my pride to ask for help, that is where I am. We have raised enough for the surgeon so far, and I'm hoping to raise enough to cover the anesthesiologist fee as well as the down payment required for the hospital. This will allow me to have the surgery as soon as we hear back from the hospital as opposed to waiting until we can bring these funds together.

If you can help, thank you so much. Please don't feel bad if you can't as I know so many of my friends are in the same place I am in! Feel free to share as I'm trying to get this out as far as possible. And of course we'll take all the prayers, good vibes, etc  that you can offer. Thank you again dear readers.

Wednesday, July 02, 2014

Camille, Flying

When Camille asked to take trapeze, I did not immediately say yes. Instead I asked her to watch one of Piper's classes, and to think on it. Camille has never been one to bust out into new activities. She's more cautious, and it's harder for her to add new things to her routine. There was a time when this was incredibly difficult for me to comprehend as I am just the opposite. I tend to jump into one thing after the other--leaving one half finished project after another. Too often my own desires, and sometimes needs conflicted, greatly with Camille's, and for awhile it meant butting heads. Over time I adjusted my expectations, learned ways that we could both live the way that our brains are wired so to speak. I have never subscribed to the idea that parents must sacrifice all to their children but I have learned through time that parents must adjust their reactions to their children.  Thus I overrode my impulse to gleefully sign her up and went with my suggestions first.

Camille persisted in wanting to do trapeze even after the stipulations. We signed her up. She was in a class with two of her friends which helped in her feeling comfortable. Initially she did okay with getting up early (for a kid with insomnia 11 is an early class). As time went on it was harder to get her moving. But she only refused to go twice in a five month period. I watched her in the class with a feeling of both pride and trepidation. My own childhood filled with ostraziation and bullying often colors my reactions to my children's social interactions. I stifle my impulse to interfere, and long ago stopped giving them little suggestions to fit in. As long as they are kind they are allowed to be who they are.

Perhaps it's the nature of a class like trapeze that Camille was not mocked by the other kids. There were lots of kids who were quirky and funky. Everyone loved that Camille brought a stuffed Pokemon to each class to watch over the kids as they practiced. There was always at least one kid who admired Camille's Minecraft and Dr. Who tee shirts. No one minded that Camille dresses like a boy much of the time. After a fresh hair cut, there were lots of compliments on her short funky style.

Of course Camille's behaviors often go beyond the funky and into places that are easily misinterpreted. She would sometimes refuse to do certain exercises or moves. When it was due to over stimulation, she would just go sit and cover her ears with her head down in her lap. Other times it was because the bar was hurting her hands and she hated the feel of the grip spray on her hands. Her teachers were kind and considerate of her needs. They learned to just let her be when she was over stimulated. They encouraged her gently when she was clearly stumped by a move and just stood by her bar. We worked together to come up with a solution to the spray problem (powder is a better choose for Camille).

The biggest test for Camille came when it was time to perform. She was very scared, and I had assured her that she totally did not have to do the performance. She wavered for a time but finally committed to performing. I admit I was scared for her. Scared she would freeze in the middle. Scared she would be whispered about. That those whispers would reach her ears. I worried that it was too much pressure and that she would be pushed into a place hard for her to escape. The memories of where we had been was so fresh. The times I had pushed her into places that did not feel safe to her, and the struggles that ensued. We had come so far in our relationship. I felt like I had finally earned her trust back, and of course I feared jeopardizing what we both had worked hard to build. But it was her choice, and one thing I have learned is that children are quite capable of making choices on their own. We just have to learn to back off and support them quietly from the side lines.

The day of the trapeze was rough. I had been in the ER the night before, and I think Camille had sat up worrying as she does for me. She slept late but was still tired when we roused her to shower and dress. She spent a bit of extra of time with her rituals, a sure sign of nerves. But she didn't fight us, and she didn't change her mind if it was with more a grim sense of determination than genuine excitement.

As we got closer to the studio instead of growing more afraid, she began to bounce with excitement. She leapt from the van, skipped to the studio, and ran off to join her class before the rest of even reached the front door.

And when she came out to perform? She was shining. She bounded on the mats, her head high. She was breathtaking beautiful in her confidence and her strength as she swung up on her bar to the open notes of the song.  For what seemed like the briefest of times she took flight with that bar. Watching her as she twisted her body through move after move, graceful, strong, and so sure of herself brought tears to my eyes. She twirled, spun, and  flowed through the air. She had pushed herself into a place that  was new and not comfortable at first and made it her own. The air was hers as were the bar and the rope.
When the routine was done, she spun in a circle on her bar, and landed with cat feet on the mat, her arms up in triumph. She bowed with a sense of drama rarely seen in Camille. She was a star and the huge smile on her face as she tuned to me let me know she knew it. After the show, parent after parent came up to me, saying "Your daughter's smile at the end of the show was the best." She had captured the perfect the joy of achievement, and the sheer fun of ariel dance. 

For me it was so much more than just a successful show. It was the culmination of what had been for me a rather scary experiment. You see we pulled Camille from public after school after her disastrous K year. She was mocked and bullied by the adults I had trusted to teach her. They made fun of her when she held her arms up in her puffy coat because she hated the feel of "fat coats". They ignored her as she sat alonr on a bench during recess. She tried so hard to be "good" for them that when she got into our van at the end of the day she would start to beat on her sister. I would pull over and hold her as she raged and screamed taking the blows on my own body. We finally pulled her but I didn't learn even then. 

Instead I subscribed to the ideas proposed by groups like Autism Speaks...the idea that my child had a disease and I had to cure her. We never did anything extreme in terms of quasi medical treatment but I did try to make her social, make her  communicate in ways that society deems normal. I tried to stop her ritualistic behavior. I forced park days on her, and forced her to talk at said park days. I didn't vaccinate my fourth daughter because I was scared it might put her on the spectrum too. And then one day we were in the teary aftermath of yet another battle. Camille and I were both holding each other, sobbing while the other children looked on, eyes wide. And I knew there had to be a better way.

At the time, I didn't know there was a whole different way to think about Autism/Asperger's. I only knew that I could not do the same thing to my daughter that the adults at her school did. I had to find a new way to approach her. For the next three years, Camille and I started on a new journey.  A journey where Camille's neurology was respected. Instead of working to change Camille, I worked on both of us learning to trust her choices and ways of being in the world. We learned to negotiate situations like park days something her siblings loved and she hated (she could bring a book and read). We learned how Camille could enrich her friendships, and I taught her ways to communicate her needs to her friends.  Over time, Camille changed. She was confident in herself and most importantly confident in her difference. She was bold and proud. Tantrums tapered off. Of course things weren't perfect. We still all got grumpy when we were ready to go and Camille had to spend 15 minutes with her leaving ritual. And I,m sure R wasn't fully happy at being vaccinated at two. So at the end of this performance, I saw a child who had stepped out into the unknown, confident because she trusted us, and she trusted herself.

 In the interest of other parents avoiding the painful path I had to take, I offer these links. Please if you have a child on the spectrum go read these pages. Our children do not have a disease. They are not an epidemic. They deserve acceptance not awareness: