9/27/2012

What a Wonderful World...



My children are loud, animated, engaged with each other. Their voices tumble over each other, like clothes in the dryer, and shrieks punctuate their conversations, as one says something that sets the other off, but the intermittent shrieks don't slow down their ever-louder play with words. That's what it is--they bounce against each other, their bodies touching, hands reaching out to point, to touch, to connect with one another, as they climb over each other, packing their lunch for tomorrow, the refrigerator door left open as they almost fall into it, looking for just the right thing to eat tomorrow.

Their bookbags are flung here and there, the contents spewing out, and Lily shows me the two warrior books she's reading at the same time, shoes are here, there, and everywhere, and paper and crayons dot the floor.

Laundry baskets filled with neatly-Bobby folded clothes are plopped down in the middle of the living room and dining room and kitchen and who knows where else, the boy's attempt to clean the house never quite reaching fruition. In the morning,  we will all wander the house from basket to basket looking for favorite things to wear, ignoring closets full of clothes that just don't feel quite right.

Books have overflown the wall-to-wall bookcases, and are piled on the couch, even neatly arranged as one of the arms of the couch becomes a make-do bookshelf, closest to my chair, in the order I might be most likely to read them, and books pile on top of the neatly lined and up-standing row of books. Books lie stacked on the floor all around my chair, even neatly behind the recliner, where I will never be able to reach without getting up and walking around. Once in place, they are in their home, and I will be hardpressed to find new homes for them in other nests around the house, until the sheer volume of volumes forces a move so the new tomes can lie near me, where I can touch them, see them, feel that I am surrounded by the endless possibilities the texts offer me for escape and edification.

Blankets are piled like the princess and the pea in purple velvet chairs, so that cats can recline in abundant comfort until one of us decides we need just that particular blanket--is it a zebra kind of day or a nice sherpa wool kind of day? Cat hair is a free accessory, and possibly a cat, too.

Stuffed animals sit with science fiction action figures on shelves and vie for people's attention. Occasionally these toys find their way to the floor where they are engaged in play with my little ponies and littlest pet shops. Elaborate pizza and cheesecake parties are held on the bridge of the enterprise, pulled out from under one purple velvet chair and placed on the large orange, brown and yellow sunflower rug that makes anyone in their 40s or older remember the 70s rather vividly.


The house is lived in--abundantly, freely, obsessively lived in. It is a mess, to be true, with its piles of treasures dotting the housescape, but it is at least, even though noisy, even though imperfect, a wonderful world to inhabit (and rest in).

9/23/2012

Revisiting BAPpiness: Does the Label Make the Person?


I've been reflecting on autism and what makes a disability and what makes a personality, as I wait for the APA to get its shit together and release the new DSM. Will the change in criteria mean my children are suddenly no longer autistic? (No, it won't). Psychological disorders diagnosed by behaviors are subjective at best--from both the client's side and the psychologist's side. Biases and knowledge bases make sure that there is a lack of consistency across the board in who gets a diagnosis and what diagnosis it is. The codes for the DSM are used to get insurance reimbursement--a label is needed--a number code is required--the medical model requires labeling and coding everything if people are going to get services and have insurance reimburse or cover the cost.

As a wise friend of mine likes to say--you only need the label if you need services. I tend to agree, but I do understand that recognizing yourself in a label that other people share provides comfort and a sense of community. I know that seeing other BAPpy individuals out in the real world and online lets me know that there is a whole group of people who get me, understand where I'm coming from, and can appreciate my issues. It's been a tremendous blessing, and I'm okay with my quirky tribe--I don't need to label it beyond that or rely on the DSM to discover who I am. I think we really want to avoid that if we can, especially given that the DSM sees only deficits. I know that I don't want my kids to define themselves by that flawed manual, nor to see themselves as a list of negative traits. My kids are not at all a cluster of deficits, and neither am I. Neither are any of you, for that matter. 

I think there is a serious danger in adopting an identity imposed on us by others--for example, adopting a sick role because one has health issues--not happening--when we see ourselves the way others who are narrow in their vision see us--as fat, as sick, as defected, or as limited, we give our power to define who we are and who we want to be away, and I'm not a big fan of that. I refuse to be delineated by my challenges and I will not let an environment be created around my children that says they are limited or confined by their challenges. 

There may, indeed, be comfort in numbers, but I think it's important that we don't pigeonhole ourselves into someone else's label. I think insisting on our uniqueness and value as individuals while noting our commonalities is the best way to promote a healthy climate for our children to grow up in, free to explore the range of their personalities without being confined to a checklist of deficits or stereotypes.

Sometimes a number is just a number, and a series of checks is just that--a series of checks. In the end, those benchmarks can't tell the whole story of a person, nor should they.

(June 2012)
While browsing facebook, I ran across a friend's posting of a link to a diagnostic test for autism and Asperger's that I hadn't run across before, The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R). According to the abstract,

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) is a valid and reliable instrument to assist the diagnosis of adults with Autism Spectrum Disorders (ASD). The 80-question scale was administered to 779 subjects (201 ASD and 578 comparisons). All ASD subjects met inclusion criteria: DSM-IV-TR, ADI/ADOS diagnoses and standardized IQ testing. Mean scores for each of the questions and total mean ASD vs. the comparison groups’ scores were significantly different (p < .0001). Concurrent validity with Constantino Social Responsiveness Scale-Adult = 95.59%. Sensitivity = 97%, specificity = 100%, test–retest reliability r = .987. Cronbach alpha coefficients for the subscales and 4 derived factors were good. We conclude that the RAADS-R is a useful adjunct diagnostic tool for adults with ASD."

The 80 questions will undoubtedly strike those familiar with autism as being somewhat stereotypical; there are no options for "sometimes," either. The choices are now and as a child, now as an adult, only as a child under 16, and never. Sometimes none of those choices is quite right, and sometimes some of the questions are frustrating, like "The phrase 'I've got you under my skin' makes me very uncomfortable." WTF? What if it only mildly confuses me? Why would it make me very uncomfortable? Or "I feel very comfortable with dating or being in social situations." Really? Not every neurotypical person is going to feel VERY comfortable--it depends on all sorts of things as to what one's comfort level will be and much of that has nothing to do with being on the spectrum.

According to the journal article, which examined the international validity,

"A RAADS-R score of 65 or greater is consistent with a clinical diagnosis of ASD. A RAADS-R score of 64 or lower is not consistent with a diagnosis of ASD (sensitivity = 97%, specificity = 100%). It must be emphasized, however, that if a subject has a score of 64 or lower but clinical judgment indicates that ASD is present, the clinical judgment should take precedence. This is due to the many limitations of self-rating scales that will be elaborated upon in the discussion section."

So, 65 or higher? Hmm. Before I read the study, I took the test. I answered the questions honestly as best as I could, having no idea what the cutoff scores were for autism. My score? 107.

The scale has several subscales: language, social relatedness, sensory/motor, and circumscribed interests, and I was over the threshold on all of them, although just barely on the language subscale and social relatedness. Those were surprising, although I was not surprised that I was high on sensory/motor and circumscribed interests.

What do I do with this new information, that I score above the threshold? Nothing. Do I think I'm suddenly on the autism spectrum or that I've always been and now know just because it scored more than high enough? No.

I've long embraced my BAPpiness, and this test result doesn't change anything; it doesn't make me view myself differently. I've watched my children grow, seen how their traits and mine, Rick's and other family members are all so similar. I know my kids get it from us, that genes and environment have mingled in such a way that they qualify for and need the diagnosis to get the assistance they need, that these traits rise to varying levels of impairment in the three of them. It also leads to tremendous strengths, too, though.

So even though this test, and others like the EQ/SQ/AQ suggest that I'm highly BAPpy (and sometimes tipping over the BAPpy line), I also know that I don't need the label and if the DSM criteria itself is rigidly adhered to, I don't qualify. Being BAPpy is a good enough explanation for how I see the world differently from others--seeing myself in my kids, there's a sweetness there that's also a little bittersweet. They've got some of my traits that I'm glad to see them share and others that I know cause them difficulty, and I'm sorry they have to go through some of the same things I did and still do, but because I have and do, I can help them along, give them tips and be there to understand when it's all too much.

I think we can get hung up on labels in our search for why we are the way we are, in our attempt to find our own kind. I don't need a label to do that; I don't think that label is appropriate when disability is not a fundamental part of it. But that's my own opinion, and I respect that other people have other opinions on whether autism ought to be a personality type or a disorder.

I don't know where autism will ultimately land, if people will win the day and move it to a full, inclusive spectrum that incorporates us BAPpy people on the light end and those with severe autism that leaves them significantly disabled on the other end--if we'll find a way to discuss this in such a way that the spectrum is recognized. Heck, maybe BAPpy will catch on, and all those people who are not impaired by their cluster of traits can come over to the BAPpy side and leave autism to those who are seriously and significantly disabled by the differences in their neurology. I know for me, though, that I cannot and will not co-opt a label that is still recognized by the medical, psychological, and educational fields as a disability; it would be a disservice to my children who are hampered or disabled by their autism to say that I, too, am autistic.


Me and my girls.


My first post on BAPpiness:


7/17/2011

Bippity, BAPpity, Boo!


In the autism community, it can’t help but be noticed that a good portion of the parents of autistic kids deal with the same kinds of issues their children do. Indeed, researchers also noticed that the personality traits that were similar in kind to autistic traits and behaviors, but usually of less intensity, were present in many of the family members of autistic individuals.

These personality quirks and issues that mirror autistic traits (but usually less in number and in intensity) are known as the broad autism phenotype. Micali et al. (2004) note that the “genetic liability is not only confined to autism per se, but also applies to a constellation of subtler abnormalities, known as the broad autism phenotype.”

Certainly calling this “constellation of subtler abnormalities” quirks and issues is a much more appealing way of dealing with the reality that many of us parents of autistic children have faced our own challenges in overcoming or working around or flat-out accepting (because overcoming and working around seem to be out of our reach) various social and communication deficits, or our own narrow interests that we hyper-focus on, or our own anxiety issues or sensory issues (or all of them).
Some parents even come to the realization of their own place on the spectrum after having a child diagnosed. We see ourselves and our experiences reflected back in the struggles our children face, and we feel comforted in having a name for those struggles. Even if we decide that our cluster of quirks and issues don’t rise to the need of a diagnosis, we can see ourselves and our mates, and other extended family members reflected back in our children, and we have the term broader autism phenotype to explain it.

For years, my husband and I have joked that when our powers combined (think Captain Planet), how surprising is it, really, that his issues and mine combined would bite our kids in the butt, or that our strengths would also be their strengths? Once acceptance and understanding of autism kicked in, it became increasingly easy to look around and see those traits in ourselves, in our siblings, and our parents. And it became a comfort. After all, here we all are, adults, and we made our way, mostly overcoming the worst of the issues and relying on each other to help us get through those hurdles that were still too high. If we could do it and do so without labels (other than those other kids or adults placed on us like geek, nerd, dweeb, weird, eccentric, odd, etc.), then there’s certainly hope that with a combined effort from family, school, and community, that our children will find their way in the world, hopefully with less shock and awe.

In accepting autism and the personality traits and issues that go along with it in our children, we learned to be more accepting of our own quirks and our family members’ quirks, as well. We learned to cut some slack and give more second chances. Accepting autism doesn’t mean excusing bad behavior or free passes, but understanding where the weak spots are so that more directed, targeted effort to strengthen those weak spots can occur. It meant being able to name and understand some of the issues that had kicked us in our own asses, hard, over the years, and being able to go, well, alright, then, how do we fix this? We also learned that if we wanted our children to rise above, we had better do so, as well.

Learning about autism and the broader autism phenotype, even when the scientific literature is difficult to not take personally, can be an illuminating experience.

I’ve never minded geek or nerd, or being a combination of the two, and I don’t mind knowing that I am those things because I am BAPpy, nor understanding my husband and where he’s coming from better because of his BAPpy traits.

No, life isn’t easy, and I’m not making light of the struggles that come with social anxiety or with the darn near OCD-like tendencies, and I’m sorry as all get out to see my kids struggle with my issues, to see those issues magnified and intensified in my children a hundred-fold, to realize that their genetic inheritance gave them autism and some other issues that I’d have loved to spare them. And it’s not particularly a happy moment to realize my lack of interest in social events and clubs makes helping them be more social creatures all the more difficult, but together we’re finding our niches, places where we are free to be our true selves, to leave masks behind, to be confident in who we are so that when our true selves are not embraced as we’d wish we have the internal strength to see that as the other person’s loss, not ours.

References

Micali, N. N., Charkrabarti, S. S., & Fombonne, E. E. (2004). The broad autism phenotype. Autism: The International Journal of Research.

This originally appeared at Laura's Life in the House that Asperger Built: http://lifeintheaspiehouse.wordpress.com/2011/04/28/bippity-bappity-boo/

9/20/2012

Maybe more Klonopin Lunches Are in Order

The title, Klonopin Lunch, caught my eye. It is catchy, right? And in the title alone, it encapsulates how a sizeable portion of our society gets through things. Sure, it may not be klonopin. There are a number of anti-anxiety meds available to mellow people out. In the 70s, it was valium given out like candy, and now it's xanax.

Jessica Dorfman Jones takes most of the memoir to get to the title of the book. After nearly two years of spiraling out of control and deeper into the seedy underbelly of the New York party and band scene, Jones has a serious falling out with her lover, a guitar player who becomes her addiction, and turns to an old friend for a shoulder. He serves her a little blue pill--a klonopin, to go with her tomato soup and grilled cheese, and its calming effects allow her the chance to think about her life and its trajectory.

If it were a fairy tale or a modern romance, perhaps that one blue pill would be enough to help her get a handle on her life and replot its course. Of course, we all know that one anti-anxiety med alone can't fix us or the messes we've made.

Jones, even while changing names and condensing some events, doesn't shy away from the hard things. She doesn't elevate herself or think her actions were without consequences for her or the people who care about her.

In her attempt to find herself, walk on the wild side, and break free from the monotony she felt her life was, she is glaringly honest with her mistakes, and what she feels was her helplessness to alter her course. All she knows is she's miserable, she's bored, and the life she was living, although safe and secure, is not for her. She even admits to trying to have her cake and eat it, too, trying to hold onto her marriage while still engaging in risky behaviors like snorting coke with her lover and his friends. She writes about the guilt she feels, the weight she loses because she can't bring herself to eat from all the lives she's trying to keep afloat.

Compartmentalizing only works for so long, especially when what we are doing violates our core ethics and principles. What do you do when those nice, tidy boxes you've shoved the various parts of your life in burst? Well, in Jones' case, it means losing her husband, leaving her lover, and starting all over again. She rises from the ashes and gets her second chance at living a life that she values.

Klonopin Lunch pulls the reader along, drags the reader sometimes unwillingly ahead--it is painful, even when it's a text, to watch people self-implode, and if you've ever had a ringside seat to that, it can make it even more challenging. Jones is a hell of a storyteller, and reading her memoir was an opportunity to read something completely different from my normal books for review.

While I had expected a discussion of anxiety, mood disorders, depression, and how to deal with it productively, in a healthy manner, I was not disappointed that therapy isn't even addressed until the acknowledgements. We're a flawed species with a tendency to self-medicate in ways that are not helpful in the long run. It takes courage to admit to how low we can go, to reach out and ask for help, and most importantly, to admit how frakked up we are.

What should readers take away? Is there a moral? After all, by her account, Jones landed on her feet. Divorce is common. Drug use, less common, but still not out of the ordinary. She still stayed employed, saved money, and never ended up on the street. She pulled back from the abyss. She was and is one of the lucky ones.

And, my take away, personally, is that I am abundantly lucky. Yes, I have issues, but I haven't self-imploded. I sought therapy and appropriate medication for my anxiety and OCD issues, my depression. I actuall have regular klonopin breakfasts and dinners. Why? Because it helps me manage my issues, it lets me get out of the house, and it allows me to be functional. It helps me face the demons, and keep going.

We all have our ways of dealing with existential angst and the deep, philosophical questions that keep us awake at night, wondering what the hell we're doing and why.  Jones chose a path that could have destroyed who she was, but she walked through that and came out the other side and is happier for it. There ought to be an easier way to figure out who you are and what you want, and I think there is, at least for me. Being a parent worked to ground me, to help me fight my battles in a relatively appropriate way. Sure, I rebel. I'm writing this with a purple wig and an attention-getting, potentially People of Walmart outfit. But that's my way of fighting my demons. When we most want to fade into the woodwork and be unseen, that's when we should wear purple hair and bold outfits. And, probably, have a klonopin lunch so we can actually get out in the outfit and hair, rather than being stuck in the bathroom.

9/18/2012

Falling in and out of grace

This past weekend, a friend and I attended the Partners Resource Network's Beyond the Ard Conference in Austin.




The hotel was incredible, and the conference was well-planned and a good experience for meeting parents across the state. It was wonderful to visit with people who are deeply invested in creating open playing fields for those with disabilities and the inclusion of a panel of individuals with disabilities was an important acknowledgement that the stakeholders in this are ultimately our children who will grow up to be leaders in the disability community. Our role is to support them and to create environments that allow them to reach their maximum potentials.

The conference closed with a presentation by Josh Hanagarne, the world's strongest librarian and an individual living with Tourette's. I wish I could remember the specific details of his talk--it had me crying throughout. He is without a doubt a man with a story to tell--not one of ultimate overcoming, but of persistence. Some things can't be cured, can't be overcome. They may be able to be improved, to be tackled, to be granted moments, even months, of grace, only to return in full force, a seeming betrayal. And the work begins all over again to learn to navigate the reoccurrence and to find a way to make peace with the latest hurdle suddenly thrown into one's way.


Grace is not a natural state. It is a state to be worked towards daily, to be honored and cherished when we have finally worked our way to it. It is not a state, though, that we get to and remain in. We are constantly falling in and out of grace, and it is up to us to find our way back to that state.

So when we are granted moments of bliss, let's remember them, record everything about that state so that we can hold onto it when we are in the thick of our lives, knowing that we will find our way back to that ephemeral state of grace.

9/13/2012

Meeting Time

Rosie loves her counting bears and has several sets.


She will spend hours lining them up.


This was a new arrangement she called meeting time.


According to her, the bears on the top are the leaders, 
and the other bears are listening to them.

Looks like an attempt at world domination.
Are the listening bears adoring or fearing citizens?
And the top bears benevolent leaders or sociopathic dictators?

9/11/2012

Disability and Siblings

Growing up, my brothers and I were each others' biggest allies and biggest pains in the ass. We fought, occasionally drawing blood, and we played. We spent a lot of time together, and while we weren't entwined in each other like my three kids are, we were much closer when we were younger.

We definitely had sibling rivalry and made the most of it. I can remember, though, with tremendous fondness, those times where we were close, hand-in-hand close, or middle-of-the-night talking close. My brothers and I had our issues as kids, and having our disabled grandmother living with us and requiring our care and attention definitely made for a different childhood from our peers.

In their own way, my three kids have a different childhood from many of their peers--they are all autistic. So the article in the Washington Post by Ranit Mishori about autism and siblings last week was of interest to me. If my brothers and I can be blindsided by emotions today arising from events thirty plus years ago, then the issue of sibling relationships, especially when it comes my kids and the need to respond to each of them in a way that best fits their neurology, is of keen interest to me as the mother of three.

When the girls were first born, we thought we had "dodged the bullet of autism" and worried about how they would view their brother as they grew older. In hindsight, it was a silly worry--he's their brother-he's Bobby. As the girls got older and their autism was apparent we worked at building their appreciation for differences; we had a song and dance about issues and how everyone had them and that was okay. We took them to Special Olympics events Bobby competed in, to the day center Bobby attended, and for several years Bobby had a friend from the center over on Sundays for the afternoon and supper.

The girls have been raised with an awareness that everyone has different issues and challenges and that working with each other and Bobby leads to an interdependence that increases their abilities. Bobby has them spell things for him or write the grocery list down; they go to him for help with so many things: game tips, help pouring milk, help with all the the little and big things they haven't mastered yet and he has.

They don't experience sibling rivalry in the way my brothers and I did, and I'm grateful for that. They can and do keep track of things, so we are careful to ask if they want the same number of presents or the same amount of money spent on them for events like birthdays and Christmas, but that's about the extent of that.

Call me overly optimistic, but I don't think that the experience of living with disabled siblings is a bad thing or a negative thing. I think it can be, but that parents play a huge role in whether that happens, although they can't take complete ownership of that. In the end, we are responsible for own emotions and our own baggage--we can choose to carry it around year after year or we can see the past as just that: over and done with. We can start fresh. I know we can, because when my brother had his stroke, and who he was, the life he had been living, was done, and a new life with new capabilities began, I had the option of continuing to carry that old baggage into the new. For the most part, I let it go. It cropped up at times, unexpected and shocking, and I have had to reprocess and choose to let it go again--just because it reared its head didn't mean I had to pick it up again.

Sibling relationships are incredibly complicated. They are often stormy. They are also some of the most important relationships we will ever have. Our siblings know who we were better than anybody else, and they have most of our skeletons, which means they will always have a hold on us. We learned how to be friends and how to be enemies with our siblings. We learned how to stand our ground and how to rally around and be supportive.

My children are incredible people, and we make sure they know it--know how much they are loved and valued and how important they are to us and to each other. No, life isn't easy and isn't painless and it's loud here--they argue finer points constantly-they are all opinionated people, after all, but they genuinely love each other, and most important--they like each other. How cool is that?

After all, who else is going to be that much into Yu-gi-oh, Pokemon, My Little Ponies and anime?

9/10/2012

Google Results Can Be Surprising

Lily has discovered google on her non iPhone-iPhone (she can't make calls on it). And wikipedia. Rosie ratted her sister out this weekend, telling her grandma and me how Lily knew that Taylor Lautner voiced one of the characters in Danny Phantom, leaving us both surprised that the girls even knew who Taylor Lautner is. We don't have satellite or cable tv and haven't in nearly two years. It's amazing what our kids can pick up at school and on the internet and netflix.

This morning, Lily marched into the living room, pushed her iPhone into my view and asked how a picture of her and Rosie had appeared when she did an image search for Danny Phantom logo. Hahahaha, along with the words  "that the entire premise of Danny Phantom as "half ghost" is beyond absurd."

Oops.

I couldn't duplicate the search and pull that image up--there are 377,000 images for that search, but when I googled "Danny Phantom absurd," their picture was the number one hit!



On the one hand, it was funny to watch the girls' reaction, and on the other hand, it was a sober reminder that once you put an image out there, you have no control over where it will show up. You might think that your blog is obscure enough that there's no harm in sharing, but something like this shows you that your children's pictures may show up in the strangest of places.

I'd been reluctant when I started blogging to show contemporary pictures and settled for showing pictures of the girls from behind, but the kids have appeared on the news or in the newspaper, or on websites or public facebook pages, so their anonymity was gone, and I decided that given that, it was no less safe to show them on the blog.

I think that even though the girls see the blog, okay the pictures first, that they were surprised to realize that meant they could pop up on google searches. And Lily was miffed to think that people would see their picture on a search of Danny Phantom and think they were being critical of the show. 

It raises questions, though, about their privacy that I know all parent bloggers ultimately have to consider, and it reinforces the need to discuss with them the posts before they (both the posts and the kids) go out there into the world. Does this change how and what I'll do? I don't know--the cat's out of the bag, and I wouldn't write anything that would embarrass them--or that they aren't comfortable with. 

I think that there's an important message to be sent by sharing autistic individuals' stories in an honest but positive light, to show what it's like in a family with three kids on the spectrum and BAPpy family members. I think the more stories shared, the more we'll be able to combat those unrealistic and damaging portrayals that often occurs in news stories. I think that's important--disability is often missing in discussions of culture and society. It's important to make sure that the diversity of voices is heard, that all sorts of people's stories are available, that no one has to feel his or her experience is the only one--there's a wide community out here on the internet, and no matter how rare, someone else is out there dealing with the same kind of experiences.

I know that my kids have benefited when I've shared blog posts about other kids on the spectrum with them, to know that there are lots of people who experience the world in similar ways. They feel connected and special. They feel good, and seeing pictures of those other kids makes a world of difference, makes it real to them. That is worth, I think, the chance of the girls popping up on searches for my little pony cutie marks or danny phantom searches. What'd be really cool is if you googled awesome autistic kids and they popped up. 

I think it's worth a shot to make that happen.

These are my awesome autistic kids! What about yours?







9/09/2012

Seeing Someone as Limited Means Seeing Them as Less

In a general conversation among friends and acquaintances we might not think through the ramifications of our words--we flow with the conversation and speak off the cuff. When we're not in front of the camera, like politicians, comedians or celebrities, that's probably okay--if we make a gaffe, we can fix it right then and there or in a follow-up conversation, once we realize we've shown our ass.

But when we're speaking to a group, when we're teaching a class, when we're in front of a camera, when our words should be considered, our position on complex situations worked out in advance, a slip of the tongue can have long term damage not just for ourselves but for the people we've injured with our words, which signal our underlying beliefs.

And so it is especially important when talking about those with disabilities and differences. Our choice of language becomes much more important--and all the more revealing of our underlying biases.

My son Bobby is a wonderful young man--he's sweet, he's funny, and he's got the biggest heart I've ever seen. Injustices towards others wound him to his core and wind him up. He wants to fix the world--make people be nice to others--to stop doing bad things, wrong things, hurtful things. He carries his outrage with him at a low simmer. He is also, although he often spends a lot of time talking, sub-vocalizing, relatively clipped when it comes to answering questions. He is, in other words, a man of few words when few words do the job. He almost always has a smile. He's genuinely concerned about other people and never fails to wish me a good day when I drop him off in the morning to volunteer. He always asks if I had a good day when I pick him up.

He's a joy to be with. But he also has his challenges. He can't write--because he can't spell--but he's clever and gets around it--sending me audio files as text messages. His speech, when he's trying to answer questions or explain, is halting, with stammers and stops as he works hard to find a way to communicate. And yet, these audio files never cease to make me smile--he's accomplished something that is incredibly hard for him, and I am so proud, even when I'm not quite sure what it was he was trying to convey. Did I say he was a joy? He is a miracle. He has battled against stroke damage to his left thalamus, relearned how to walk, to talk, to write, to read. He works each and everyday to find ways around his challenges, and to make a good life for himself--one where he is fulfilled and happy and of service, and he's done incredibly well--he is happy, he is fulfilled, and he is without a doubt of service both at home and in the community.

So when someone thinks of him as limited, even though no harm may be intended, the reality that despite his challenges and his successes, what is more important are the things he can't do, the underlying reality of that message is that he is seen as less than others because of those challenges.

And that, my friends, is bullshit. If you see others as limited, you are seeing them as less than equal. And it doesn't matter if you equivocate and say you have your limitations, too, because your 'limitations' aren't equal to the person you just called limited.

My son is not limited. Neither are my daughters. They have challenges. They have issues they fight to overcome. And that reality, my friends, means they are heroes. They wake up each day knowing they are going to have to work harder to overcome those challenges than most people. And they get up and they do it. Each and every single day.

That's not limited. That's valiant. That's brave. That's courageous. That's something that many people will never understand, never experience, and never be able to appreciate. And it's those people who see those with disabilities as limited who are truly limited.

9/06/2012

What You Don't See...What You Don't Know

It's weird, I think, but I'm more comfortable revealing my anxiety disorder with OCD issues than I am health issues. Maybe it's that it's possible to take potshots at anxiety and OCD, to find humor at my own expense, to share when I can laugh at it. I'm not ashamed or embarrassed, nor do I feel stigma over these issues. But when it comes time to disclose that I have fibromyalgia, that it often kicks my ass, and that the fairly typical accompanying issues like IBS and migraines can all work together to make my daily life more than challenging, I often stop myself from admitting it. Few people know that each day is a crapshoot, that I drag myself through the motions, often not knowing whether I'll be able to get out the door in the morning, whether I'll be able to walk into class and get through teaching, that I hope and pray and cross my fingers that adrenaline will take over and that being "on" will allow me to forget near constant headaches, nausea, GI issues, pain, and fatigue while I'm in front of my students.

Add in diabetes to that mix, and a medication that's working well to lower my blood sugar, but that leaves me having to be careful to eat regularly and appropriately to avoid low blood sugars, and it provides another thing to have to think about, one that can alter my personality, mood, and functioning in a moment. I'm having a harder time learning to manage this component--the need to stop and eat two hours after each meal--to eat right, so that I get enough carbs, to make sure that the food is good quality, nutritious, than I am in putting one foot in front of the other and doing what needs to be done so that I don't feel worse than I already may.

The last two weeks of classes have been spent moving through each moment, sometimes forcing myself to put that one foot in front of the other so that I can simply get home and collapse in bed with no choice but to sleep. Every single day of the last two weeks has required a nap in order to get through the day, with early bed times, too. Some days there were even two naps and I felt like I was letting everyone down by having to take that time to shut down and recharge. I don't know--still am not sure-whether last week was worse because of side effects from an increase in a fibro med, and then a weekend of dizziness as I reduced the dose back to what it had been for the last four months and whether this week is really any better--no dizziness, but that's the only difference. Having to decide on whether to live with constant dizziness or burning patches on my legs and bone and joint pain throughout my body that strikes like a knife slicing through me is a really crappy choice.

Finally, tomorrow I go see a pain specialist. I don't know that it will fix anything. Fibromyalgia is a tough disorder. I was diagnosed 24 years ago when it was psychosomatic illness and received a medical discharge from the reserves because of it. It's a name I learned to hate every bit as much as I learned to hate doctors' visits where you could see them shake their head and know that they were thinking your pain was all in your head, all because you couldn't handle the stress. I spent four extra months at basic training getting physical therapy every day, so it must have been real enough...right?

I learned, though, to hide that diagnosis in the years after my discharge, to ignore pain, to relegate it to something that was all in my head, not real pain at all, not real damage. Even as rheumatologists and other medical specialties came to recognize and accept fibromyalgia as a real syndrome, with accompanying comorbids that look like a checklist made specially for me, I refused lyrica when it first came out and a military doctor wanted to put me on it. I scoffed at the commercials. I ignored my symptoms, and kept going. I'd already been told it was effectively in my head, all because I wanted to get out of things, after all.

For many years, I was lucky to be home with the kids, where my challenges could be worked around. Can't stand for hours? No problem--at home you can stop and rest, sit or lie down when you need to. Need to sleep but got three autistic kids? Put them in the bed with you and sleep as they jump on you. Or lie on the couch by them as they watch tv. It's a lot easier to work around fatigue, migraines, stomach issues when no one but your family sees you going through it. It's a whole other ballgame when you're in the workplace and you find yourself embarrassed having to explain that the fluorescents make you have migraines, so it's either wear a hat and sunglasses or keep the lights off. For three years I wore the hat and the sunglasses and then I said to hell with that. I avoid the fluorescents when I can and teach in  natural lighting where possible. Hah, and now I wear wigs...hmmmm. I wonder if there's a part of me that recognizes that when we're afraid to stand out we lose our power, and so I push myself to stand out in other ways--ways that I choose-- even when I won't verbalize the reality that my health sucks many days.

If you're family, and close, you already know this stuff, and if you're close friends, you know--I could not have made it through these last three years without the support of my family and two of the closest friends I've ever had (and yet never met!)--their emails and honesty and support let me know it's okay to be me, it's okay to have health issues, and they don't let me wallow. They push me to go to the doctor when I need to--to take breaks when I need to, to slow down--to accept that I'm human. They do tough love really well, and I thank them for that support.

I think that we hide the things that make us the most different--things that shame us, that we think we should be able to overcome. I don't know why anxiety/OCD don't shame me--but maybe it's because I recognize the link between those things and my kids' autism, and no way am I going to project shame onto them--no way no how. It's also just who I am--it's my neurology and that can't be changed--it can be managed, but it is an essential part of who I am.

But being sick is being weak, and having health issues that are exacerbated by stress like migraines, IBS, GERD, and fibromyalgia, well, that stigma still clings to me, even after all these years. It's time, though, to let that go, to not to be embarrassed or ashamed that I have to work hard to get out the door on time because my body doesn't always work well, that I tire out easily and require naps to make it through the day, that I am never pain free. There's no shame here, and therefore, no need to hide. There is, however, a need to keep moving forward, owning that reality, but not allowing it to rule my life--neither by extending effort to hide it or by going the opposite direction and wallowing in it.

It is what it is; it's been there for longer than I've been married. I wasn't the healthiest kid, or teenager, or young adult--this isn't new--and much of it, if not most of it, simply isn't going away. It's a part of my background, like the tinnitus that's been background noise for well over a decade now. There are ways to mask it, like the fans in every room of my house, like the pills I take each day to deal with nausea, to deal with diarrhea, to deal with pain, with GERD, and to regulate my blood sugar, my anxiety, my OCD issues. Spending precious energy pretending it doesn't exist is stupid, and that's certainly a lesson I want my kids to learn well--our energy is precious and we need to use it wisely--on big things that matter.

So you may not see it, may not know it, when you see me walking through the hallways at the college, or forcing myself to get through a night time engagement, and that's okay, but if you do know, if you do see, if my mask slips and you see it, the pain, or a moment of confusion, or if I stop a class for a moment to take pain meds, like I did today, or to eat because my blood sugar's low, that's cool, too. After all, you've seen me with purple hair, with pink hair, with blue hair. If you can accept my zaniness, my issues with anxiety, my need for everything zebra, well, you can probably handle knowing that as soon as I get in my car, I'm going to let the mask drop, as soon as I'm sitting in my office, my demeanor is going to be different--one of the costs of being energetic and lively in the classroom and my encounters with friends and strangers, alike, is that when I'm alone or with family, I can simply let all of it go and sit and be still, and hell, apparently even sleep so deeply crashed across my bed, drooling, that I sleep through my son's efforts to wake me. That, my friends, is worn-out.

Hey, if nothing else, you know I gave the situation my very all. I didn't hold back. And when that nap's over, watch out! Well, after I wipe the drool away and my joints loosen up.

9/04/2012

Oh Kitty Boys and girlie girls!

They remind me of my girlies, entwined in each other.

Always wrapped in each other.

Startled by the picture taking.
But quickly embracing the photo op.

Jackie moves to my lap, deciding that it's softer than the desk.

Where he alternately hides

and peeks.
Rosie gets in on the action and poses, too.


Then Jack grabs the camera, deciding enough is enough.

Before he leaps to Rick's chair once it is empty.


9/03/2012

Moving Beyond Arbitrary Borders and Artificial Scripts: Real Social Skills Training for All

For every "treatment" or remediation in autism-land, there are both fervent believers and detractors. For every person helped, there's another harmed. Perhaps, just perhaps, in some cases, it's not the therapy itself, but the person conducting the therapy that makes it a problem.

There are bad apples in every field, people who misapply therapies, others who use their position to abuse, and others who are so incompetent as to be dangerous. Nowhere is this more evident and problematic than in the disciplines that are involved in helping people--be it in academia, in psychology or in service-related fields.

A recent post making the rounds of facebook is "How to Be Socially Awkward or What I Learned In Social Skills Class" by extemporarysanity,  a sarcastic and witty romp through all that is wrong with social skills training. There's no doubt that when social skills training is that rigid it can lead to problems, especially when interacting with people who don't know or follow the script.

Restricting social skills training to autistic children and teens is foolish at best. It assumes that the deficiency is the autistic individual's, not the general population's. And this is simply not true. We teach  people how to treat us by our behavior and reactions. We expect, as adults, for teenagers to be churlish and bored with school and with adults, and we expect them to be indifferent to others in need, when the reality is that our youth are often reacting to our expectations. Change what we expect, treat them with respect and as people with equal value, and we get a completely different response from them.

So, just because there are ineptly applied social skills programs out there, does that mean social skills training should be dumped entirely, or  should it be revamped and integrated into all classrooms and all subjects? Is there a call for social skills training to be more widely implemented throughout the entire population? Daniel Goleman has spent the last two decades studying emotional intelligence, the psychological equivalent of real social skills, not scripts for awkward situations. Emotional intelligence is, according to Goleman, on the decline--the ways we used to learn emotional intelligence have gone by the wayside, and we are too often compartmentalized--children don't have the opportunities to engage in free play and the chance to learn to navigate the social waters with each other. Instead, children are overly programmed and moved from activity to activity. Even social opportunities are programmed--playdates where parents dictate the hours, the places, the activities to be engaged in.

It's a different world, no doubt. My brothers and I had long summer days outside where we wandered the neighborhood and mixed with the neighborkids. It wasn't utopia, to be sure--there were disagreements, enemies, and the need to create safe spaces and fall back plans. We had the chance to walk all over, to go into places of business and navigate that territory alone. We were dropped at the mall so we could catch a film, eat something, roam the shops.

The freedom to learn from our encounters, especially when those encounters went badly, allowed us to grow, to problem-solve, to compensate.

Social and emotional learning is not just for autistic and other neurodevelopmentally delayed individuals. It is for everyone, and until schools and parents intentionally focus on teaching real-world skills to all children, we're going to continue to have issues with our kids, all our kids, growing into emotionally and socially mature individuals. All you have to do is look at any news article to find socially and emotionally immature trolls who have nothing better to do than to lash out at those who are different from them. Or, failing that, try driving by a school at pickup or dropoff time to see adults who believe that they don't need to wait their turn--that they are too important to not go to the head of the line.

Goleman notes that social and emotional learning curriculums for all students from kindergarten through high school are gaining ground: "In Illinois, for instance, specific learning standards in SEL abilities have been established for every grade from kindergarten through the last year of high school. To give just one example of a remarkably detailed and comprehensive curriculum, in the early elementary years students should learn to recognize and accurately label their emotions and how they lead them to act. By the late elementary years lessons in empathy should make children able to identify the nonverbal clues to how someone else feels; in junior high they should be able to analyze what creates stress for them or what motivates their best performance. And in high school the SEL skills include listening and talking in ways that resolve conflicts instead of escalating them and negotiating for win-win solutions."

Sure, there will be people groaning that this isn't something the school should have to teach everyone, but those of us who have children on the spectrum know that our children's worlds would be much easier to navigate if everyone learned the social rules--that we need to show respect for others, listen quietly, respond appropriately, and most importantly, to be kind--to give others a break.

All too often, as a teacher, I can look out at my sea of students and see their frustration with students who are different, or who choose to ask questions or comment in class--they sigh, they roll their eyes, they mutter under their breath. Acceptance of all is not something we are good at, and the greater the difference, the less the acceptance. Teachers can absolutely mitigate that, at least in the classroom, by having a zero tolerance policy for that kind of behavior and by modeling patience, acceptance, and inclusion.

There is a growing awareness among educators that social skills training is for everyone. NASP Resources' website notes, "Good social skills are critical to successful functioning in life. These skills enable us to know what to say, how to make good choices, and how to behave in diverse situations. The extent to which children and adolescents possess good social skills can influence their academic performance, behavior, social and family relationships, and involvement in extracurricular activities. Social skills are also linked to the quality of the school environment and school safety."

Instead of assuming that these social skills are naturally learned, NASP argues that "it is important that educators and parents reinforce this casual learning with direct and indirect instruction. We must also recognize when and where children pick up behaviors that might be detrimental to their development or safety. In the past, schools have relied exclusively on families to teach children important interpersonal and conflict resolution skills. However, increased negative societal influences and demands on family life make it imperative that schools partner with parents to facilitate this social learning process" (emphasis mine).

If we want our children's social skills to generalize to the wider population, we have to as a society make sure we're on the same page, that we value the same skills, that we provide a welcoming environment where quirks and eccentricities are not made fun of, but embraced. Diversity exists, so instead of isolating others who are different from us, instead of laughing at them or deriding them, let's model what we want for our children and autistic friends: acceptance and appreciation and do so by demonstrating patience, both in the classroom and in the real world.