An Update on the Hidden Shovel

Nearly a month since my last post here, with the thought that somewhere there was a shovel in there. I went out to the garden today to see how it fared. Shovel still buried. I took some pictures and stayed awhile to work in my chaotic but still beautiful garden. It may still have large pockets of beautiful, but I can guarantee if it isn't tended to more frequently, as the winter comes, it will go from chaotically beautiful to a complete and total mess that no one will find attractive.

It seems to me, naturally, that this idea naturally dovetails over into real life. We have to tend to ourselves, take care of ourselves. Sure, we can get away with it for a little bit, but if we don't focus some attention on our own needs, well, at some point, it isn't going to be pretty (and I'm not talking looks). We get run down, our soul on empty.

It's been a hell of a fall semester. I can't not think of time in that way, what with kids in school, me both teaching and taking courses. There have been some crises, lots of challenges, and a significant amount of  adjusting for Rick and me as our roles shifted. I'm out of the house, well, darn near as much as he is, and when I am home, I am working or studying a good bit of it. So, we've shifted a fair amount of the parenting and carting of children over to his shoulders. A good bit of the cooking, as well. Not as much of the housework as I was hoping, and we all know he and the bright boy really blew it on the garden front.

I have to start with the positives, though, as I talk about the difficulties that have arisen this semester. It's been a good couple months for my bright boy and garden girlies; they are thriving and happy (despite the rough week plus with the H1N1 we dealt with). Still autistic, though, so I'm not saying they've not been challenging months as a parent. I'm stressing that overall, for my children, the balance is absolutely in the positive. They are doing well in their lives, at their capacities, and are reasonably happy. They have friends and they are coping with the challenges. No, not without a fair amount of meltdowns, but I'll take what I can get. Most days, we run a tight ship and it helps keep everyone on an even keel. It's the only way to keep all three of them functional (goes for their father and me, as well).  Yes, there's a lot of yelling, but a lot of that is because none of my children have a volume control. They are LOUD.

At the beginning of the semester, one week in or so, maybe two, my brother Kurt had emergency surgery for an abscess that ruptured in his colon, resulting in a colostomy. That was a rough patch, but he actually has coped pretty darn well with the colostomy bag. He plays with it way too often, and, well, me being me, he has a nickname that isn't at all kind, referring to his bag, with boy at the end (let's go with colostomy bag boy, as it sounds nicer), but, seriously, what are sisters for?

My other brother, Kyle, found out last month that he had a brain tumor (I named it Fred and started calling him tumor boy, naturally). He will, by the love of all that is holy, get the damn surgery scheduled tomorrow or big sister will hurt him. Smack him upside Fred, give him an aspirin. You know? Enough is enough.

In the midst of life-risking and life-altering changes for my brothers, I've worked at teaching three classes that, being charitable, have provided me with the most challenging (and not in a good way) students I have had to deal with in an interrupted teaching career that goes back, frak, way too long, over 17 years. If we counted the years I homeschooled the bright boy, in all honesty there was no break, just pockets of no pay, and bucketloads of challenge. I also started back to school to work on my bachelor's degree in nursing, having had not quite a midlife crisis, but a shift in how to accomplish my goals of working with chronic pain patients and conducting research. Hopefully, it will lead to a merger of nursing and health psychology, although withthree and a half years left for the nursing, Rick would be less than thrilled at another three years to get the doctorate. Well, we won't tell him, then, will we?

My point, convoluted as it ususally is, is that in the midst of the chaos that my life is, a loud, vibrant cacaphony, honestly, some things get neglected, like gardens, and while for a time, things can continue to grow and flourish without active tending, it doesn't stay that way. Eventually, you have to pay attention to those things you've neglected before the work is too daunting, the task too demanding, and the effort too much to make.

Yes, the shovel may still be buried in there, but if we don't uncover it soon and tend it, it will no longer function as a shovel. It will, like the rake that had been leaning against a tree for six months that my husband grabbed today to use, fall apart and be of no use to anyone.

Friendships, relationships, tending our soul, our body, our mind; women tend to let these things fall by the wayside when the daily demands grow excessive. Before we know it, these things have been covered up, hidden away. Wait too long, and we may find the damage too great to fix.

Next weekend, my husband's definitely unearthing that shovel.

taken today

Go to Countering and make a joyful noise!

http://counteringageofautism.blogspot.com/2009/11/making-joyful-noise-what-we-love-about.html

There's a shovel in there somewhere

Seriously, there is a shovel in there somewhere. My garden remains, for the most part, unattended, ignored, shoved to the side as if it no longer mattered. My gardens, over the last two decades in the various places we've lived have been my visible reminder that what I do makes a difference. My gardens have given me peace and hope, as they have been visual reminders that our work, our careful tending has a demonstrable impact. There were many years, so many years, in my bright boy's soon-to-be two decades where it felt like no progress was made, no developmental strides occurred. My gardens gave me the fortitude to continue my work with my son (and later my garden girlies), with the hope and the belief that careful tending matters, makes the difference.

There's no real miracle story, no one day the bright boy was normal, here. He's a vibrant, sweet young man who has carved out a good life for himself at the day center he attends. He has a best friend, he's had the good fortune to have three girlfriends at the center in the past year. He had a first kiss a year ago, his first date a few month ago. His goodness shines from him. I am proud of him, of the man he is growing into.

The girlies thrive, as well, happy to go to school, happy with the lives they are working so hard to create for themselves, and I am for the first time in my adult life able to spend my time on my work and on working towards a new career, full-time work and the chance to tend new gardens of different kinds.

Like my garden outside which, although no longer time-consumingly tended, continues to grow and evolve, with a wild, chaotic and yet beautiful flowering, my children grow and bloom in their lives. They don't need my complete absorption and assistance now. The years of careful tending are paying off as they move forward into their lives. Yes, they still need some spot tending. But they don't need all of me anymore to thrive.

Autism, in all its varieties, does not have to keep a child, a person, from thriving. Parents who see autism as shackles on their children, as a thief in the night, miss the point. Miss the child. Miss the person. Miss the shovel, I suppose. We are a complex waltz of neurons and neurotransmitters. Of glial cells supporting the wonderful electrical dance. We are all-or-none kinds of people, and yet many of us miss that, miss that who we are is ever-evolving, that we are a part of a convoluted, incredible tapestry. We miss the beauty in the flowers blooming crazily everywhere when we focus on the weeds that peek out beneath the blooms, when we focus too narrowly on what we are missing or need to do instead of looking at the totality and what we have now.

                             

The National Park Look, or a garden unattended

Gardening was for many years a creative outlet, a way to keep my hands busy while my mind turned things over. It was a way to see fast results from effort when it seemed as if all my work with my bright boy yielded no progress.

I love flowers. I love working in the dirt and I especially love being busy. I've spent the last seven years tending to the half acre we have, working to create an oasis in West Texas. I've had some successes and I've created lots of work to be done, as the flowers (and weeds) have taken over that half-acre.

This August, I accepted that my front garden had gotten past my ability to tend (I didn't use to teach through the summers, so I had no outside-the-home work and the time) and grudgingly let my husband mow it almost entirely down. And I handed the reins to the back garden over to the bright boy and him with the instructions to put it to bed for the fall and winter. Rick hates the sunflowers, so I thought for sure it would taken care of.

That was the end of it; I hadn't been out back since school started up on the 24th of August (except to feed the fish two days last week in the wee hours of the morning in the dark). I thought they had it under control. Hah. The last two weeks, Rick and Bobby attended Mike's AIT graduation and were out of town for two days, and then the fair started, so Rick's been busy working security out there when not tending the kids or at his regular work.

This morning, I stepped outside to do play with yeast and hydrogen peroxide with the girls, mirroring part of what I had done in chem lab this week. And I took my camera with me to catch the last of the morning glories, the sunflowers, you know, the glory that my garden ususally is.

Oh my God. Rick hadn't mowed the grass since, I don't know, three or four weeks ago. No one's weeded in at least two weeks. It is a total disaster. I don't know when the last the time I have been so mad is, but, wow. I was mad today. I called my dad and asked him if he had seen my backyard, knowing he had and asked him how come he hadn't told me it was a complete disaster. He said he thought I was going for that natural National Park wild look.

Well, there you go. :--)

Balancing Beams and the Quest for Perfections

Three weeks of the semester, of the school year, are down. While I'm nowhere near ready to contemplate the summer, I do know that those of us who have some wear and tear on us will feel that we'll hardly blink and the school year will be done.

So, as the days fly by and I find myself juggling the various demands of being a student (did I mention that I swim in a sea of puppies?), of being an instructor in two different disciplines, of being a mom and a wife and all the various jobs those titles of honor convey, as well as being a blogaholic, I wonder, do I find the right balance? I'm an extreme kind of gal, which should come as little surprise to those who know me. I might do some things half-assed, but I'm fiercely committed to that half-assedry. I jump into things full tilt and moderation is not the name of the game. Ever.  Ask anyone who knows me.

I've jumped into the A & P and chemistry full-tilt. I don't just want to get by. I want to know it all and know it well enough to teach it. I now dream A & P and chemistry. And I love it. Puzzle boxes. Chemistry is puzzles. A & P is a different set of puzzles. The students and instructors also puzzles. My students are, as well. All of it, life, is a giant set of puzzle boxes, and  I am absolutely immersed in the experience.

I'm tired, though. And perhap a bit pissy as my Countering Posts might reflect. I don't tolerate fools well and the world is still full of them.

I am tugged in so many directions it is a wonder I don't spin constantly, but they are good tugs. Wonderful tugs. Tugs from children and spouse and parents and brothers. Tugs from friends that delight and amaze me at my good fortune to have met them. Tugs to write, both blogs and stories. Tugs to grade essays so that I can  have the blessing of being allowed into the interior worlds of my students (and so often find my heart tugged until I cry, no choice but). Tugs to enter grades. Tugs to organize and restructure my growing piles of books around my recliner. Tugs to study, to learn, to be more and do more than I do now. Tugs from the garden. Tugs, never ceasing, never ending tugs.

What more could a person ask for than this abundance of people, of goals, of tugs? It is an embarassment of riches, and if I never find a balance, if I am always full tilt into life, what's the harm of that? To live fully in the moment, to love fiercely, to feel passionately about everything so that you give yourself over to it, even if it is chemistry, well that is perfection. My perfection.

What is yours?

Sibling Reflections

I am the oldest of three and mother to three. I watch my garden girlies and the bright boy, how they interact with each other, treat each other, feel about each other, through the prism of my relationships with my brothers. I'm sure most of you who have siblings and are parents do the same thing. I think, all things considered, that my children's relationships with each other are strong, warm, and affectionate. Yes, they know what sets the other two off, and yes, they usually run with it when the chance presents. And I watch and smile. They razz each other in perfectly normal sibling ways.

My brothers and I were rough and tumble kids. We fought, often physically, and got into trouble whenever we got caught. My brother Kurt was something else as a child. Boy, he'd have had some labels, for sure, had they had them. I'm surprised he didn't since some of the labels were around. He was trouble as a kid. Biggest smile, incredible charm, and complete trouble. He was the same into adulthood, as well, until drug abuse culminated in a stroke a little over four years ago and left him a changed person. The smile is still there on occassion, but the charm is mostly gone. The vanity and handsomeness has been lost in the nearly hundred pounds he's gained since shortly before the stroke. The keen intelligence and the certitude of that intelligence have been dampened.

The brother I had before the drugs took their toll and slowly stripped him away was lost all but completely the day of his stroke. Yes, he survived, but the things that made him a wonder to behold, the shiny bits, those were taken away and we were left with someone who was significantly diminished. Yes, there were positives; the drug abuse stopped; he's on medications to manage the underlying mental disorder that plagued him. He's home all day everyday and he's safe.

Until this week, when he began to feel ill, complaining of intestinal distress. My brother, easier as he is now to deal with, is still not an easy person to deal with. He's a gaping maw of wants and needs, a perpetual baby bird with his mouth continually open and cawing for more, more, more. He's got a fairly lousy diet despite my mom's best efforts, and he was inconsistent in letting anyone know of how bad he was hurting when this started Tuesday.

 Did I mention he's not the easiest to deal with? He bitches a lot. It's a lot like my bright boy, who at the time of his stroke at the age of nine, had spent the previous six months complaining of headaches whenever he didn't want to do something. I dismissed the initial complaint the day of my son's stroke, because like Peter calling wolf, I'd heard it time and again. We perhaps did the same sort of thing with Kurt.

Last night, he went over to my parents and complained more specifically and my mom took him to the emergency room, where they found an abscess in his colon. He was admitted, and this morning when I talked to my mom after taking my A & P test, she let me know about his admission. I spent the rest of the morning with Mom and Kurt. He kept demanding a drink, even though he was NPO (nothing by mouth). He even snuck some tea while Mom was out of the room, admitting it to us before he was wheeled into surgery several hours later.

Did I mention he's difficult, needy, and pushy? And yet, he is my baby brother and I love him. Even though, as I sat with him earlier today and watched him in the hospital bed demanding ice chips or something to drink, a  pepsi even, and thought to myself, you know he really looks like Jabba the Hut laying there. Still I love him.

He was rushed into surgery late this afternoon once the surgeon finally saw him and saw his CT and read it as perforated instead of just an abscess.  Less than two hours later, my brother was out of surgery, minus some of his colon and with a colostomy. An hour or so after that, he was in his room, demanding again. Ice chips. Glasses. The remote control. Pain meds. And still looking like Jabba. And me still loving him completely and forever.

Because he's my little brother. And that's what siblings do. They love each other completely and forever, even as they razz each other, even as they think uncharitable thoughts. They love each other. And they're there when it matters. Both Kyle and I are there for him when it matters. And even when it doesn't. Because, well, there's a little ping of satisfaction in raising a bottle of water to one's lips and taking a nice, lip-smacking, thirst-quenching drink of it while giving your baby brother who keeps asking imperiously for a drink a shit-eating grin. I admit it. And he'd have done the same. And once upon a time, his grin would have been even bigger. And the smacking would have been a whole lot louder. And I'm pretty sure I'd have smacked him. And then we'd have gotten into trouble. :-)

May you get well soon, little brother.

Ebullient Joy, or not a bad week at all

This has been a good week. It's been busy, certainly, chock-full of new people and new things, not just for the garden girlies, but for me as well. The garden girlies first week at school was, in Rosie's favorite word, awesome. They did well adjusting to new teachers, new classmates, and for Rosie, a new campus.

And in all honesty, so did I: a new campus, new teachers, and new classmates for me. I started back to school this semester at a local university to do my prereqs for the BSN program here. I'm taking Anatomy and Physiology 1 and General Chemistry 1 this semester, and the spring will be the second sections of the courses.

While I take these classes, and let me tell you, wow, lots to study and more hours than a full-time job on these two courses alone, I am also teaching my normal load of three courses at Cisco. I have to be on both campuses Monday through Thursday, and so make mad dashes between the two those four days. It's beyond awesome, as Rosie would say. Friday is just one class at ACU, so it seems light by comparison. :-)

So, this week, I met 73 brand new students in my classes I teach; nice folks each and everyone, and I'm looking forward to getting to know them, and had four of my favorite former English students come take me for psychology, how nice is that? I met the three instructors I have for the two classes with labs I'm taking, and watched in a bit of awe the two classes and the chem lab be filled with 40 to 60 students each depending on the course (A&P lab is small, less than 20). Wow.

Oh, and I learned what it's like to be the OLD student in a mass of veritable puppies. And the most important lesson I learned: me sitting relatively still and quiet for 50 minutes to an hour and a half is not EASY! At all. Damn near impossible. It got easier, though, as the week progressed. So much to soak in, not just the course information, but people watching at its best.

These kids are a little younger than my bright boy. They are busy, energetic, LOUD young people who bustle with purpose. Sitting in the labs and listening to them chat about their majors and their plans for their futures tickled me. I remember being a puppy, too, and being absolutely certain of my life's path. I've learned by now that a general idea is better than specificity, and that there's no way, knowing me, that this will be the last "career" choice I make. I'm sure more will occur to me, but knowing me, I'll just want to add them onto the pre-existing career choices.

I started out as a pre-engineering major at HSU in 1986. I took physics and calculus, English and psychology that first puppy year. I wanted to switch to psychology, but my dad convinced me that English was more employable. English it was. Years later, I started a master's in English and stopped when I hit the 18 hour mark because the bright boy needed me more than I wanted that master's.

A few years ago, the bright boy and the garden girlies needed me just a little less, so I went back to do my master's in psychology online. I focused on chronic pain for my thesis and how adaptive copers might be those who were more optimistic in explanatory style, might have certain personality traits like agreeableness, openness, extroversion, and might have greater spiritual well-being. I knew before I finished that master's that I wanted the nursing next. Oh, of course I want more schooling after this next four years are over. I'm me. I'll try to be content with it, and I think there's a fair chance that my curiosity will have boundless and endless opportunities to find satiety with the field I have chosen and the possibilities I will have for career choices. And in the meantime, I've got the next four years to learn all sorts of new things, not just from the courses themselves, but from the people in them, as well.

All sorts of people, an almost limitless supply of people to get to know between the courses I will take and the courses I will teach. It's my ebullient joy. Stories and relationships. It's even better than the information in textbooks (and if you know me well, you know I adore and collect textbooks)!

So, if I'm not on the blogs quite as much, and I see no way to do all of that right and write with the sheer abundance I usually bring to the blogs, you know where I am and that I am grinning fiercely with ebullient joy.

It was an excellent week, all in all. I mean, there weren't any sheep brains in the A&P lab like I was hoping for, but there's always next week, right?

As Much to Worry About

Last night was meet the teacher night at the girlies' school. It's a big school, over 700 kids in K-2. Daunting, to say the least. The girlies were quiet and big-eyed. I worry for them, as all parents do about their children. Will the kids in the class accept and like them? Will the bullying that seems to be specialized with girls be worse this year for the older garden girly? Will this be the year that the littlest one faces that specialized bullying? How do I help them navigate the social world while tending to the academic one?

There are no easy answers for my children, and none for yours, whether they are NT or not. We need to work harder as parents to teach our children kindness, compassion and acceptance, to make the world easier and softer for all kids, for all people.

I'm working to teach my children to stand up to bullies, to treat others with compassion. I need parents of NT kids to do the same. To work as hard as I am to make the world a better place. If we all worked together to stand up to the bullies of the world wherever we find them, to tell them no, enough, then things will get easier for our children. And for us. We won't have as much to worry about.

Choosing joy, celebration, and light

Petunia wrote a lovely piece, "Perspective Parenting" at http://lovelifeandaspieantics.blogspot.com/2009/08/perspective-parenting.html. It touched on the article so many of my woo fighting warrior princesses chose to actively rebut, along with my posts on the subject. It's been a summer of pieces and comments like it, the martyr pieces, the woe is me, the autism-is-worse-than-cancer crowd, and our not-quite-frenzied responses to them. It's been a weird tug-of-war (and apparently it's a post of hyphens. WTF?) between members in the autism community.

I wrote in depth on Julie's piece, and commented on the NY piece, and taken on additional pity party posts (see, I can do alliteration, too). I've written on autism and the pain I suspect that is driving the parents who choose anger, bitterness, and blame. And I'll continue to comment directly to parents who post things like they wish their child had died or cancer would have been better, because it has to be recognized that these are not appropriate emotions and signal that the parent or person feeling that desperately needs some help.

To put your name on it and then post it on a site that is read by tens of thousands of people, and at the same time admit that in fact your child is "recovered" and you're still feeling that way is a further indicator of the need for some help, and I write this with complete and total compassion for the mother who wrote that and for the many mothers who high-fived her. To sit back and pretend or advocate that these emotions, responses, reactions, and associated behaviors are appropriate or beneficial would be beyond wrong.

You can be compassionate and caring while being honest in conveying the unacceptibility of certain emotions, behaviors, and actions. Conveying it in writing may be difficult, but we should still try to reach out and offer understanding while promoting more positive and adaptive coping skills.

Not getting over something you've been dealt in life is a choice. And I say this as someone who's been dealt significant challenges and hurdles. How you react to a situation ultimately is up to you. Blame and anger eat away and leave no room for joy or appreciation.

I choose joy. I choose a celebration of life. I choose the light. And if I am lucky, that example will lead my children to choose the same joy, the same celebration, the same light. And I will, of course, do it with my kick ass kumbaya style that is all my own. Because that's just the kind of gal I am. :-)

What have we gained and lost over the Summer?

Two weeks and one day. That's it. That's all that is left of summer vacation. It didn't feel like a vacation to me. There was one week off after the girlies' school year ended before they started five weeks of a summer program at the elementary.

The week that ended was the week I started teaching two courses for summer 2. I've had less driving around carting children this five week session, but it still doesn't feel like I've quit running.

Summer 2 will finish on Thursday, and I'll go to the adjunct meeting that evening. The following week is passport session on Monday and Tuesday for ACU, where I'll take classes part time, and three separate doctors appointments, so it really won't feel like a break there. I'll finish prepping the two classes I've already been assigned and get ready to write a syllabus and course outline and prep for whatever third course is thrown at me at registration (please let there be a third course!). Hopefully, this week I will find out what classes I could still get into at ACU, get the financial aid worked out and begin to get a feel for my schedule for both teaching and taking classes. It may take until the 21st to have it all squared away.

This gives some idea of the business of the summer without even adding in a garden that got badly overrun as my ability to tend it significantly diminished this summer compared to previous years. Then add in what a busy time it has become with the internet community of friends I have added to my life. I feel blessed, enriched, and thrilled. This year saw not only the making of some incredible internet friends, but the making of real-life friends as well, after so many years of really only having my parents, brothers, children and husband to talk to.

I think I have gained alot as I have worked to find a balance to my life, one that lets me reach out past my family, past my students, to have an impact on the wider world (maybe a small one, but an impact, nonetheless), my effort to make the world a more welcoming place for my three children.

We kept the bright boy in his regular routine of attending the day center during the week, having learned from winter break that two weeks home with his sisters saw the girlies showing significant regressions when they went back to school. It kept Bobby happy; he likes routine and he likes his life at the center and returning home each afternoon. To disrupt that would have served us all poorly.

The girlies progressed academically over the summer since I teach them for part of nearly everyday they are home year round, figuring their education remains my responsibility, and because I believe that whatever academic edge I can give them gives them time to focus on other skills at school, like social skills and following rules, schedules, and directions. So, I believe there are strong gains there for both girlies and I feel lucky that neither girl has the cognitive impairment that the bright boy does (and now folks will go, is she being tacky with that name? -- no, he is the bright boy because his smile is radiant, his soul so sweet that he shines so bright-- look through the pictures of him on this blog and it's clear. It didn't occur to me the other way of reading that phrase until I just now wrote the sentence).

Are there losses, though? Did they lose social skills? Their cousin's been here, so they've played almost every day with her. Was that enough? The first week of school will tell, I suppose.

I think, in two weeks and one day, though, when we put a close to this summer, that overall, we will feel it has been a summer of progress, of gains, and not losses for the children. Rick and I sustained some career disappointments, but rebounded quickly. So, even those I won't count losses when you can use them to act as the catalyst to making changes.

We faced adversity, as well, and handled it fairly well. And we move into the fall with some challenges, as well. That's life. How we handle adversity matters more than the things that befall us.

I hope everyone can look back at this summer as it comes to a close and see that they, too, made some gains and that the losses they sustained were necessary, catalyzing ones.

Back to Positive Stories! A ghosthunting we will go!

My bright boy loves ghosthunting shows on television. Talks about it nonstop. And I mean nonstop, so when my friend, who loves to go ghosthunting with her husband and other friends, invited me to go some time, I promptly suggested that Bobby come, too. Last night was THE night. As the girlies were jealous that the boy and I were going to go, we decided to go earlier in the evening, before it got dark, and we left the cemetery shortly after nightfall (caretaker coming along to shut the gates helped that).

No, we didn't get any ghosts, although we found that my digital camera's night option triple flashes, causing some really cool pics, but the kids had an absolute blast. And the girlies' bright, loud, and happy chattering probably helped some lingering ghosts choose to pass over just to get away from the chatter.

Our Children's Stories: How to tell the bright spots when nasty people attack

This past week was an interesting and challenging week. It was a week where some "people" decided to see how nasty they could be. And how one individual could take a piece from here and twist it and mock it. This person had a blog of her own under another screen name that she took down this week once it became apparent that my friends and I knew who she was, had been kind and empathetic to her, and yet she'd been a bully.

I was left with the struggle of how do I write about my children when there is that kind of nastiness out there? Especially considering that this nastiness is being done by OTHER parents of children with autism. Not strangers with no commonalities, but parents whose children have the same neurological condition, face many of the same issues. These parents attack other parents with lies, distortions, and sometimes just complete assiness. What the frak is wrong with them? It's one thing to disagree and debate the person's argument, to debate the words, to point out where one disagrees. It's completely different to call names, distort, and lie. That's just being nasty to be nasty.

What to do? Cave into the bullies and go silent? Not a frakking chance of it! I will not be intimidated. I will not be silenced. I'll be damned if these people will keep me from telling the stories about my beautiful children, both their triumphs and their struggles. These people should be ashamed and they will be the ones who face their someday grown children's wondering looks as their words come back to haunt them, as their children see the nastiness, the negativity, how these people treated adults on the spectrum.

My two oldest children watched all of the nastiness unfold this week and tried to figure out how parents could do this to other parents. My children are taught to stand up against bullies. What I do, how I handle this adversity matters beyond the wider scheme of things. It matters to my children. They watch me, they see the names (although only the oldest knows the nastiest), and they see me choose my words, they listen to me as I tell them why I choose to keep writing.

Yes, I could make this private as Powered suggested, or I could do what she did and wipe the blog. Interesting choice for a bully to make. I will not, though. I'll keep writing. I'll keep working for my children.


My friends, allies, partners, and I, we will continue to fight. And when we question it, the wisdom of continuing, we can look to one of our friends, who has had a blog for a great deal longer, who has faced this nastiness for years and yet keeps going, keeps speaking. When it beats us down, we'll share with each other and agree it's hard and it would be easier to just go quiet. And we'll take breaks from the nastiness and then hopefully, because we'll always have each other, we'll stand back up and wade back in. We'll tell our funny, poignant, meaningful stories about our children and we'll fight the nastiness that would silence not only our voices, but the voices of those autistic adults who fight beside us because one day those adults will be our children.

And I will admit to feeling a great deal of personal satisfaction of metaphorically giving the finger to those who tried to silence and intimidate us. Yes, I do believe I will.

God made me this way

My littlest picks at her nails and her cuticles. Constantly, until she's bleeding, which then causes a crying jag because she's bleeding. My oldest did the same thing for years, and truth be told my youngest brother, who is "normal," does the same picking at his cuticles still today. Maybe he doesn't do the crying jags, though. Maybe. I don't know, though. Not for sure, anyway. :-)

Rosie is picking away at her nails this afternoon, and I take her hands in mine and tell her gently to stop it, to just stop picking at her nails. She looks me straight in the eyes and says, "God made me. He made me this way." And pulls her hands out of mine and starts picking again.

Lily, resident woo fighter in training, is leaning over the back of her father's recliner and deadpans, "Oh, yeah, what proof you got of that?"

Rosie ignores her sister, looks back at me and says, "Well, he did." Apparently that means nail picking is fine and should be left alone. I'll use this line on Rick the next time I go on an online shopping spree. I wonder if it will work any better.

"Autism is not like cancer.."

"Autism is not like cancer, where there are fewer controversies surrounding whether one should select embryos who will never suffer from cancer. That is because autism is not a disease, and need not lead to suffering, and with enough accommodation by society, people with autism can be free of suffering. Autism itself is a wide spectrum, and many people with autism can make valued contributions. But even those who will remain dependent all their lives are either special to those who love them, or just intrinsically special." Simon Baron-Cohen

http://www.communitycare.co.uk/Articles/2009/01/14/110412/professor-simon-baron-cohen-autism-is-not-cancer.html



Well worth the reading.

Unfit parenting Charge for embracing diversity

"If there was a big red switch marked "NORMAL", and you could flip that switch to make your ASD child "normal" -- what parent wouldn't flip the switch?!
If you wouldn't, you aren't "celebrating neurodiversity", you are an unfit parent.
It's one thing to count our blessings and to love our ASD child unconditionally. It's quite another thing to FAIL TO TAKE ACTION to "heal", "treat", and "cure" that child. "

http://www.ageofautism.com/2009/07/who-is-truly-disabled.html

The poster argues from the false premise that someone who advocates neurodiversity is promoting a do-nothing policy for children with autism. This is beyond absurd. Even more absurd is the argument that any parent who wouldn't flip a switch to make his or her child normal is an unfit parent. The poster rambles about NDs being terrible, then switches tacks and says they're good because they make parents work harder for a cure. All in all, it's a fairly offensive comment. But what's new for AoA, right? (At this point, my readers are probably wondering why this isn't over at Countering. I thought I'd take it to a personal level, so it's here).

Readers know I have three children on the spectrum. My girlies have no cognitive impairment, are highly verbal, and should do well with continued social skills interventions, speech, OT, and PT (working on the last three for the middle child). They'll be odd little ducks, but if you know me and my husband, well, quack. Right? :-)

So, contrary to the poster above, he's completely wrong as well as offensive. To pull a switch and take these incredibly bright, creative, funny, stubborn, opinionated, often difficult children and make them "normal" makes me want to tell the man to kiss off. I'll work my tail off to give them the tools to succeed, but I would not take from them what makes them who they are.

My son, my beautiful boy, has the added onus of cognitive impairment both prior to and after a stroke. I would flip a switch if it were that simple and remove the cognitive impairment. It's a different matter. Just as I would go back and undo my brother's stroke, if I could. But to flip a switch and remove personality traits that make my boy who he is? No. I would not. Again, I will bust my rear to give him the tools to function as well as he is able and to be as happy and fulfilled as he can be.

The commenter seems to be making the argument, if you read his entire post, that parents who don't go down every possible woo trail aren't being good parents. He's wrong. I'm just not being gullible, forcing quack procedures on my children, making them swallow 50 plus supplements a day, nor buying into the charlatans who try to convince parents that if they don't stay on the detoxing program fully or for long enough that it is their fault and their child's fault the child wasn't "recovered."

I didn't lose my children, so I don't need to recover them. I have, however, lived through my son's stroke and a prior hospitalization for a blood infection. I have held him and wondered if he would live. I have watched my middle child in the NICCU as she breathed with the aid of a ventilator and wondered if she would survive. So, I say this with a bit of righteous anger to those who equate autism with someone having stolen their child, or who think of their child as someone to be recovered: it is the parents who spend hours each day working with their children on social skills, on functional skills, who get their children the appropriate interventions at school, the speech, the OT, or the PT who are fit parents.

It is the parents who try every untested therapy, take every supplement, put their child into HBOT, put them on Lupron, on chelation, who are unfit, all because of the mistaken assumption that they can recover their child if only they throw enough money at it. Sit up a minute and pay attention. Maybe the docs you see don't take insurance but cash or credit because they are selling you a bill of goods rather than effective treatments for autism.

Don't tell me you love your child unconditionally and then subject them to all of the above.


(Note: I am not talking about regular vitamin supplementation).

Autism in a Positive Light: places for support and laughter

Raising Autism Forum
http://www.raisingautism.co.nr/Raising Autism, new forum run by the admins of the Facebook group, with the same mission as the facebook group.This will allow those who want a more anonymous setting or non-facebook interface. Both the forum and this will be maintained. We will place articles, links, information over at Raising Autism.

We hope you will join us over at Raising Autism as well as here. :-)

http://raisingautism.webs.com/Website with mission statement, blog, and collection of links to our blogs and sites.

Facebook Group: Countering AoA

Facebook Group

http://www.facebook.com/group.php?gid=91368243169 Countering AoA is now on facebook. Please come join and contribute. :-)

Accountability and The Nastiness of Divorce on Extended Family Members

or, What I'd say to my former sister-in-law if I had the opportunity:

1. The day you let your lawyer argue that my brother shouldn't have primary custody because he would bring my niece back here to live with my parents where she would be exposed to my three children with autism, which would be a danger to her, is the day you lost any respect I had left. When you then also let your lawyer argue that my disabled brother who does nothing but eat, smoke, watch tv, and sleep was also a danger, that was a further nail on the coffin.

For this alone, you will never see my children again. If we are at an event celebrating a milestone in my niece's life and you see us, do not approach my children. Seriously.

2. Bringing my niece back after a visit with a sunburn so bad it blistered and will leave scars is abuse and neglect.

3. Giving my niece your old phone with pictures of your current boyfriend's genitalia for her to see, which she did when my brother and she were flipping through the photos, was stupid, thoughtless, and disgusting. The hundreds of text messages you left on there were also not kosher. Thankfully, my brother was able to remove them before my niece saw more than the first photo. Not seeming to think it was a big deal and that my niece wouldn't know what it was, well that was icing.

4. Letting your child gain 30 pounds over the course of a year because she's had a rough year (wasn't that your fault, by the way?) by stuffing her with fast food, junk food, and then sending her back with said junk food is at the very least not good parenting. I'd argue it's a great deal more than bad parenting.

5. Your response to my message to you (which I will gladly post here) amply demonstrates your true colors.

My message to you:
Please let your mother know that her two rather ugly phone calls to my mother, where she accused Mom of several flat out lies, have put Mom into an Addison crisis. And then please inform your mother that if she has problems with how Mom and I are caring for ... while ... is working that she can filter them through you. And you can take it up with .... And then you might remind her that Mom has had the courtesy to never call her to bad mouth you or to interfere. Had Mom not erased the number from the caller id, I would have personally taken the time to chat with your mom and let her know the above. If you've never seen an Addison crisis, then you can't relate to the serious risk it puts a person in. I personally don't appreciate my mother's life being put into jeopardy because your mother chose to insert herself directly into a situation that did not involve her and was ultimately based on a series of fibs ... chose to tell. Your mother owes my mother an apology. And no further phone calls. Thank you for relaying the message. If you are uncomfortable relaying this information to your mother, you can always message back her phone number so that I can address it directly. I will send a similar letter to your mother thanking her in advance for making sure she relays her concerns to you and not to my mother. After all, I am sure you and ... would both prefer to handle the parenting of your child and your own families yourselves rather than having in-laws calling in-laws.

Your response (and out of deference that not even the full extent of your callousness needs to be made evident here, the worst of it is actually removed):

I would appreciate no further letters from you or any of your family on this or any other website. This is not designed for me to get ugly letters from you, it is for fun. I am sorry for your mother being in an addison crisis, but Kim, ... If you have a problem with my mother, then take it up with her, NOT me. Her number has been in the phone book for years, but then again, why should I expect a masters degree woman like yourself to be able to figure that out???
Leave me alone!

(a). Since this is the first time I've actually contacted you since your separation and divorce, and none of my family has done so either, perhaps you are confused.
(b). My letter wasn't ugly. And yes, from the photo you had on, I can see it was all about the fun. Since you ended your response with leave you alone, I certainly would have done so, so you had no need to close your facebook account because of one message from me.
(c). Well, at least you said sorry, right? But then, you pissed that away.
(d). Gosh, my message made it clear I would have if I had her cell; since she's not home but is on vacation, what good exactly would her home number (which I have) have done me?
(e). Hey, thanks for demonstrating the contempt you have for me, there, with the last little comment about the master's and not figuring out a phone book, especially in light of the fact that you knew your mother wasn't home. It was a lovely finishing touch. Especially in light of the fact that the person spending hours each week working with your daughter on academic skills isn't you. It's me. Nice touch.


Anything else I'd say to M if she were smack dab in front of me or did that get it all?

Oh yes.

I'd say that bringing her girlfriend into my home while she was still married to my brother and parading her as just a friend when it was obvious to all that she was far more than that was tacky. Leaving her daughter with me for days while my brother worked and she went and partied with said girlfriend was beyond tacky.

I'd say that I think a 35 year old woman who wants to have fun and party and can't make up her mind as to whether she's straight or not and has been through a steady stream of girlfriends and at least one boyfriend (see 3.), whom she has paraded through my nieces' life, is not a good parent. And whose bill collectors are constantly calling my parents' home looking for her isn't particularly responsible.

Oh, and telling my niece that my disabled brother isn't safe and she isn't to go over to his trailer is beyond ugliness.

I think that about gets what I wanted to say out of my system. I'm pretty sure that does it.

Cat pee and watered down lemonade

No, they don't taste the same. I don't think so, anyway. But I bet the title caught your attention.

I get migraines. I know, lots of us do. I used to get only ocular ones. They were cool; my eyes would go wonky on me and I'd see zig zags of white or squiggles or see blank patches in my field of vision. No head pain, or anything, just a couple hours of weird vision that made it challenging to do things, but then things went back to normal. No major inconvenience.

About five years ago, the migraines moved from solely ocular to classic migraines, and lots of them. Few of them put me in my bed and completely ruined my day, although some did. Most just made my day more difficult to wade through because of the pain, nausea and bathroom trips. And then fluorescents became a trigger, and I wore for a couple years visors or ball caps and sun glasses whenever I was under the lights. We went through all the classes of preventative meds, though not all of the possible drugs, to curb the migraines, but either the meds didn't help, seriously hurt (we had a summer trying to figure out why my heart rate and blood pressure kept tanking -- bye bye beta blockers), or had significant enough side effects that I ended up resorting to B2, CoQ-10, and Magnesium, which helped some.

A year ago, though, my doctor and I tried one more preventative, a low dose buspar, and it was the right thing. It works well enough without any significant side effects that fluorescents aren't a problem, and I was able to shed the glasses and hats, which made teaching so much more satisfying. And my migraines went from 2 to 3 times a week over the last year to once or twice a month. They no longer dominate my life. They are minor inconveniences and once again occasionally intellectually challenging trips on the wonders of the mind.

A couple years ago, my aura also switched from just ocular to olfactory. I've had migraines where everything tasted like scrambled eggs, or smelled like shrimp. Yesterday's migraine was primarily olfactory. Minor pain, relatively, just everything smelled and tasted weird.

Half the morning I spent asking my kids and husband if they smelled cat pee. I smelled it everywhere. After returning home from a visit to a friend and her son at the hospital, I finally realized what was making the house smell like cat pee to me. I had lit a sandalwood candle in the morning (my favorite scent and one that doesn't smell like cat pee at all), and when I walked in the door, I smelled cat pee. I went and sniffed the candle. Cat pee. Ahhh. At this point, I was four hours into the migraine. Fortunately, the pain never got significant. But hour six into it and the perfectly good unflavored bottled water I was drinking took on a vaguely sweet and lemony taste, which my husband tasted and assured me was good old water with no taste.

So, there you have it, cat pee and watered down lemonade.

:-)

Countering AoA Facebook Group's Focus of Interest


Join us at the new facebook group, Countering AoA (http://www.facebook.com/group.php?gid=91368243169 ), if you are ready to leave behind:

the anger,
the bitterness,
the woo that charlatans try to sell desperate parents,
the idea that vaccines, heavy metal toxicity, lyme disease, herpes, SV-40 and whatever the next nonsense is are the cause of autism.

Join us if you are ready to:
follow the science, wherever the science leads,
accept that autism is a life long developmental disorder and that while not all children will achieve independence, many will make drastic improvements as they age,
support other parents kindly and compassionately,
be tolerant of where others are on their journey of acceptance,
be critical evaluators of both the science and the claims made by those pursuing pseudoscience,
love your children unconditionally while working to improve their social skills, functional life skills, and academic skills.

This new group, born out of a desire by several parents to raise our voices to counter the negative, inaccurate, unrealistic view of autism that Jenny, Generation Rescue, and Age of Autism, Countering AoA: Following the Science, is a group ready to make a difference.

If you are looking for honest, often blunt, answers and have a truly open mind, then all the above conditions really aren't necessary.You, too, are welcome, if you are truly interested in stepping away from the anger, the bitterness, and the woo.

No comment moderation, no censoring, and no hiding. But also no harassing. Be nice. Breathe and imagine that someone else was saying that to you.

When your children make you go, 'You're kidding me, right?'

Last night, I was visiting with a new friend on the phone, and my littlest garden girlie came running up with a bloody nose. Her daddy handled it; neither one of us really gave it much thought, as the her sister is nicknamed Diggah, well, for you know, and nose bleeds happen in our house as a result of that digging fairly regularly. This afternoon, though, it was obvious the little one's nose was still bugging her, and she was still messing with her left nostril. So, I looked. That child, who will soon be six, had a small toy stuck about a quarter inch up her nostril. I mean, there are times when you just gotta ask, what-the are you thinking. She's never and I mean never stuck anything up her nose, in her ear, in the toilet. None of them did. A lot of other stupid things, but not this. Never tried to swallow small toys. Chew on, but not swallow them. Lick the furniture. But not this.

We got the tweezers and Grandma got the toy, a small Star Trek accessory, out with ease. Over and done with no problem. Thankfully. All the while (and we are all in the pool when this is discovered and taken care of), Grandma and I are telling the little girlie, for whom it has to be said, if you know what I mean, thank the heavens she's pretty, how incredibly three-year-old of her this is. On and on we go, because my mom and I are excellent at making a point until you want to scream (I'm way worse than Mom -- ask Moffie, she may not know my mom, but she knows me through Huff and man do I harp on things). The other girlie and her big brother are chiming in, so that there is a virtual cacophony of voices telling her how, well, let's call a spade a spade, stupid that was. Not calling her stupid, just pointing out sticking a toy up her nose and then not telling a soul about it for 18 hours was not her brightest moment. At all.

I don't think she'll be playing with Star Trek toys anytime soon, as she kept saying she wouldn't be going in the playroom "this night."

She did, however, get over the aversion to the playroom quickly and is in there now with her sister and cousin (who by the way were both in the same room at the same time last night and missed the whole sticking a toy up her nose episode). Let's hope the little petshop accessories don't wind up her nose tonight.

Tomorrow I will be 41. My mom is surely in awe to think that over four decades have passed since she had me.
I blinked. And now I am middle-aged. I am graying. I am wrinkled. My body looks like the statue from above. Well, maybe not quite, but seriously heading that way. Way closer than I'd like to admit, that is for sure. I am not where I thought I would be, not who I thought I would be. Vivid imagination that I have, I could not have dreamed this life for me. Just because I could not have imagined it doesn't mean I would rather be anywhere but here.
I am fortunate enough to have travelled far enough and wide enough for long enough that coming back home and settling into a life next door to my parents is a dream come true and has been for the last seven years. I am lucky enough to have survived with my husband some extremely difficult experiences, and to still be here and still be standing, with him by my side for 21 years now.
More than half my life has been spent with this one man. They have not been easy years. The Army is not an easy life, and it was hard to make it through all the separations, the first Gulf War, Kosovo, and all the field exercises. We survived our son's stroke at the age of nine, and before that all the years spent trying to find out what exactly was wrong with our boy.
We survived misdiagnoses, we survived medications, we survived 36 hour stints of being awake because the boy was awake. We made it through the decision to try to have more children, a vasectomy reversal that didn't work until two years later when it magically did and we were surprised with a pregnancy. We made it through that difficult pregnancy and our middle child coming into the world five weeks early and not yet ready to breathe. We made it through the nine days in the NNICU and the fear we would lose her. We made it through another pregnancy two years later. We've made it through the tumultuousness that having three children on the spectrum brings to a marriage.
My long-winded point is that we made it. Through it all. I don't wax mushy much, but there's something to be said for a man who makes a promise and keeps it. He's been here and stood steady. And so have I. He's let me be me, even when it mystifies him. And I do my best to afford him the same opportunities to be free to be himself, to go for the things he wants to do.
My husband had the faith in me to let me choose my own direction. Okay, fair enough to say that this freedom didn't always extend to actively helping maintain the household while I did it, but he's a man and he does and did the best he could. As my father says, it ain't eatin' no hay.
My parents believed that I was smart, capable, funny, and could do whatever I wanted to do. They still do. They might also be a bit mystified by my insatiable curiosity, but they've learned to buckle up for the ride of whatever my current obsession is.
My son, my baby, will be 20 this year, and he more than anyone else has made me who I am. He changed me, changed my ambitions, changed my personality, made me more patient, more giving, and certainly more compassionate than I would have otherwise been. I turned away from the potentiality of a career nearly twenty years ago to give him the best chance I could for an independent life, to help him achieve his potential. We may not, will not, see that independent life, but he is happy, he is sweet, and he is safe. He set me on the path to a master's in psychology in the effort not just to understand him, but to understand how so many shrinks could get it so damn wrong.
My daughters, who will be 6 and 8 soon, have taught me to laugh, to celebrate, and to fight for their chance to be included in the outer world. Bobby isn't leaving home for the outer world, so my fight for him was and is different. My girlies are bright, odd, quirky little ducks who are utterly delightful and they will have a place in the outer world, so I'm gonna fight my rather abundant derriere off to make it a nice, welcoming world for them.
So, no this isn't where I would have dreamed I'd be when I was younger, but it seems a perfectly good place to be, even if I'm closing in on the Venus figure. :-)

Open HuffPost thread for comments that won't make it through censors

Feel free to get it off your chest, but remember that you'll have to live with the words you post. And the potentiality that it will get an award of the week, as well as be used as an example in any of my courses. On the plus side, that might mean you are held up as a bastion of good sense or an exemplary writer. On the downside, well, you know.

My name is on my posts. My credentials available on my website, http://www.kwombles.com/. All I ask is that you not be anonymous. Own your words as I own mine and make available for my students to see. :-) It'll keep you from being horribly uncivil, right? Because the worse it is, the more I'll deconstruct it.

Empathy Quotient, Systemizing Quotient, Autism Quotient, oh my

http://eqsq.com/eq-sq-tests/


My Score:
EQ: 65
SQ: 112
Extreme Systemizing



http://www.autismresearchcentre.com/tests/aq_test.asp

AQ: 15

If y'all get bored, it's about forty minutes or so of your time. And good clean fun. :-)

The silent boy is no longer so silent

This is the boy who didn't talk for years, at least not English. He babbled nonsense (he still does, but now it's English, he just butchers the facts worse than Tim the Toolman Taylor could have ever dreamed of), but he didn't communicate much at all.

Fast forward to present day and last night, he juggled repeat, conjoint phone calls between his girl friend and his best friend. We had to keep reminding him to put the phone back up to his ear, though, as he'd put one down at waist level without saying he was done talking to that person, without saying good bye, without hanging up. Quite a change for all of us to experience. He talks LOUD, so no matter where he is in the house, you're in for the conversation. But, he's talking. And laughing. And engaging the world. Maybe not the great big wide world, and maybe his circle is only others who are also disabled, but he has real relationships and he's happy. It's a hell of an accomplishment and worth the noise.

To Moffie

Since I don't know if it will post or not on Huff:

And, you dear woman, who foolishly posted her real name, city and state, home number and cell number and also provided the name, address, and phone number of the mother who had stem cell treatment for her daughter for everyone to see, miss the point completely in my use of Moffie. I adopted you months ago in my mind as someone who reminded me a great deal of my late grandmother, who if she had lived long enough to have internet access and a forum to let loose her ideas, would no doubt have come across just as you do. No disrespect was ever intended by the nickname; it reflected that while I might consider your ideas to be wrong and woo-ey and you to be a nemesis, I consider you to be my woo-ey nemesis. I spent a significant portion of my night last night trying to get Huff to remove your identifying information post out of my concern for you. And the information I found out about you in my attempt to find an email address for you. I emailed you at the sbcglobal one but it was kicked back.

So, you can keep your knickers in a knot, or you can take a minute and consider that someone could completely disagree with you and yet care for you.