12/29/2012

Messages Lost

Everything lately seems to be a reaction to something else, someone else, with the end result being entrenched positions and the belief that any difference of opinion means that other person is the enemy. Pretty soon all we're going to have left is a "no man's land." And nothing happens there.

It's impossible to have a discussion of mental illness and violence without incredible blowback. And it's impossible to discuss gun control without someone thinking the second amendment is threatened. And that's just one of the currently hot topics out there. It seems that anything that can possibly be divided into either/or is, even if this is always a fallacy.

The middle ground seems to be growing smaller and smaller, disappearing as we find more and more things to divide us.

And there's no shortage of folks reinforcing their foxholes and girding themselves for war.

What's lost in this back and forth of competing facebook statuses and blog posts and newspaper articles and petitions and memes gone wild is the underlying message.

Fear prompts much of this, and so do our wonderful heuristics, which are great to have until they bury the message under so much baggage it's a wonder the message isn't forever lost and relationships forever torn apart.

In our own families and friendships, we either learn what we can talk about safely when we disagree or those bonds are damaged and broken. In the online world, shifting allegiances based on issue-positions leave me, at least, with whiplash.

We can keep ourselves firmly chained to our beliefs, ostracize anyone who thinks differently, or engage others in a continual attempt to challenge our own beliefs and work to find out how the world really works. Being skeptical, being a critical thinker, means constantly challenging one's beliefs and conclusions, looking for disconfirming evidence. It means being open to new data. It means living precariously on the edge, admitting that very little is absolute. It doesn't mean further entrenching oneself and crying foul when one's beliefs are challenged.

The scientific method is the best chance we have of finding out how things really are. It's awfully hard to maintain that skeptical, show me attitude consistently throughout our life and apply it to all our beliefs.  But if we don't, we can be certain of one thing: messages will be lost and we will see the world as we want it to be rather than as it is. And as long as that happens, it will be impossible to effect real, lasting positive change.

12/24/2012

Celebrating Milestones

Somehow, Bobby's 23rd birthday passed without me getting his birthday post written and up. Given the intensity of things in our autism community and in our real world life, that's understandable, but I can't pass this birthday up. 
Bobby got two cakes this year, one at home for just the six of us (we added a 19 year old to our household in October and she baked the cake he's holding up above). We had the Cisco College Anime club over on his birthday and talked anime and planned for the spring and then had cake. And then when my parents were back in town, we celebrated Dad's, Kurt's, and Bobby's birthday like we do every year. It, too, was a yummy cake.

And they were happy as it was an ice cream cake!

Too often, in autism-land, people ("experts" and families alike) think that autistic individuals have reached their potential when they age out of the school system. I don't know why--I can't imagine anyone saying people in general stop growing and learning at the magical age of 18 or 21. Seriously, if they did, I'd be out of a job. Bobby has made his most progress, his most growth in the last two to three years.


He's learning to roll with the punches (and that this is a metaphor and no one is going to punch him nor is he going to have to roll on the floor--the three LOVE metaphors and idioms and picking them apart). He's continued to grow as a cook and I remain forever grateful for that talent of his. He loves cooking and I love letting him take over the kitchen. It's a huge blessing. 

His heart has to be one of the biggest and sweetest I've ever seen. He cares deeply and instantly and wants to help. It's one of his best traits (of course it is--it would be one of any person's best traits to have). I used to tell him when I was his teacher, having homeschooled him for a decade, that he needed to let his light shine (using the Christian hymn "This little light of mine" to motivate him and later the girls). He shines brightly, each year more so. 

Our Christmas picture with the only Xmas decorations.

He is now 23. It blows my mind to have spent more than half my life as his mother, to see the sweet, kind man he has become. I have to be completely honest, though, and share that our life together is not without its frustrations as we still work hard to communicate effectively with each other. I misunderstand him at times, and talking on the phone with him is definitely ya-ya (thing the Ya-Ya Sisterhood and Sandra Bullock's character slamming the phone repeatedly out of frustration and her mother doing the same). The ya-ya moments aren't out of anger, but out of frustration and they're always mental images, but still...I imagine he feels that way too when we just miss making ourselves understood. And yet...it happens every day, several times a day, but he keeps on trying, doesn't let it phase him and I am amazed and honored to be his mother. It has been a life-changing 23 years and he has made me a better person. So, to Bobby, who can never remember how many times he's tried something and is ever surprised, I raise a glass and toast him. May the next 23 years be as inspiring and incredible. One thing I have no doubt: he will continue to grow and learn and amaze me.






If being Bobby's mom has been a heck of journey and an incredible experience, it's all due to being Rick's wife for 24 years today. 

How can you not adore this man?
He does my hair! :)
He plants my rose bushes (over 100 at one count).

He volunteers with me.
He laughs and loves me however I am. :)

Although he occasionally looks at me like I've rightly lost my mind.

He paints Tardis doors.
And when it's time to ease a beloved cat's pain, 
he holds him and cries as we let the cat go.
And he does it again and again.
And keeps believing that love is worth the pain.
And lets two more kitties in and adores them.

He never wanted six cats, and yet, here we are,
a full, overflowing household.
He may not be the wordiest of men.
Or the most romantic.
But he is honest, faithful, and true.
He loves deeply and completely.
And he believes that when you see a need
and you can do something about it,
 you do.
Period.

After 24 years together, he contines to frustrate and amaze me, often simultaneously. When he discovers something I've bought and placed around the house (our game with each other), I will often hear what I have decided is a laugh of equal parts delight and frustration.

He has given me the greatest gift any one could: unconditional, unreserved love and acceptance. He has helped me overcome challenges and had faith and conviction that we can and do have what it takes to get through any experience. He is my best friend, my confidante, and he makes me laugh and giggle each and every day.

To the perfect husband for me, thank you for sharing this journey with me. 







12/23/2012

Tis the Season: Making Our Own Traditions

Rosie is lying on the couch wrapped in blankets, watching me, every now and then muttering "two more days." It's the first time in my 23 years of being a parent that I've ever experienced a child counting down Christmas. Bobby never did, even when we had a figurine where you took an ornament off every day and it counted down for you--we always forgot and never had it accurate because the boy would either ignore it or take them all out within the first week.

I don't know what clicked for Rosie, that at nine, she has spent the entire month of December announcing every day multiple times the days remaining to Christmas and her belief that "this will be the best Christmas ever!" I've enjoyed the daily reminders, seeing this anchoring in time. It's a novel experience for all of us in our house--Bobby and Lily show no concern and seem to pay no attention to the counting down. It's not that they're not looking forward (well, I'm not so sure about Bobby) to it, but that they aren't anchored, don't feel the need to count down to anything. I think. I don't really know.

It's okay, though, that my three experience time in their own way, that they don't tend to the same kinds of behaviors that other kids do. I've read blogs over the years, laments really, that Christmas is so hard for families and for autistic individuals and it's always seemed to be because of expectations of certain experiences.

I think we've been fortunate. We have a very small tight-knit family and few expectations placed on us. My parents have always accepted my three as they are: unique, wonderful individuals with different needs and ways of expressing themselves. As I learned over the years with Bobby that absolute honesty was going to happen despite attempts to teach him to not share when he didn't like a gift, I learned to ask what he wanted, to shop with him to get what he wanted. We learned what he liked and what he didn't. How hard is it to stop and ask? I applied the same thing with the girls. Instead of Christmases being fraught with meltdowns and let down expectations, we have a blast. Our household is designed around their (and my) sensory issues. If they need to disappear and calm down, they do. If I need to do the same, I do. Acceptance that we are all different with different needs and that it's okay to take care of our needs means that holidays aren't any different than any other day.

I'm not saying that it's perfect, though, without some level of conflict and sensory overload (just like every other day). It's not. What I am saying is that when our expectations are in line with reality, and when we are fortunate to have friends and extended family members  who understand our children (or us) and are accepting of our individual needs, holidays can be navigated successfully and pleasurably.

Maybe it doesn't look or feel traditional. Maybe there aren't decorations (or many). But it is our holiday, our way. Tomorrow Rick and I will have been married for 24 Christmases. It's taken (quite) a few of those Christmases to learn how to let go of expectations, to look at how things really are, and to create meaningful traditions for ourselves.

May your holidays be exactly what you want them to be.

We'll be pausing to remember those families who have lost beloved family members and friends.

12/21/2012

The Best We Can

Some Much Needed Levity

It's almost impossible not to have a heavy heart this week--the pain radiates out from Newtown and we, as parents, teachers, as human beings, place ourselves in the feet of the Newtown community. As we grapple with the idea that there is often no way to foresee such a horrendous act, even as people pretend they could and shift to blaming those around the young man who acted so violently, so viciously, with such evil. 

We grappled this week with how to tell our children, whether to send our children to school. We read and watched in horror as the media and people on the internet blamed Asperger's for the shooter's spree killing. We also stood and fought against such ignorance, and then as the individual victims' stories came out, we felt all too keenly the pain and the bravery of the parents, siblings, spouses, children who lost someone. We learned that at least one, probably two of the sweet, innocent children lost were autistic. And we grieved some more.

Grief, disbelief, anger, despair. I have little doubt we all felt that this week, even those who wrote such nasty, awful things about individuals with Asperger's and those grappling with mental health issues. Those who kept posting pictures of weapons and advocated everyone being armed, that more guns were a solution, felt the same things. So did those who advocated strict gun control.

Out of the same swirling morass of similar emotions came vastly different responses. We forget that we all experienced the same emotions. We continue to forget the common humanity that underlies each of us. We see enemies everywhere. And we forget that we are a global community: one people, with all life valuable. 

Each of us can only do the best we can. It's all we've got: the belief that what we do can and does matter, that we can make a difference. It's up to us whether it's a positive or a negative difference.

Somehow we must loosen the heaviness weighing on our hearts and souls while still holding on to the lessons learned: lessons that move us forward into a more full  and "joyful participation with the "sorrows of the world."



Participate joyfully in the sorrows of the world. We cannot cure the world of sorrows, but we can choose to live in joy. --Joseph Campbell

12/19/2012

People Have Scary Backwards: Embracing Our Common Humanity in the Wake of Unspeakable Tragedy

Across the internet and in the real world, people are offering opinions concerning autism/aspergers and violence. While media outlets are making an effort to be more responsible and counter the incredibly frightening ignorance that so many are displaying regarding autism and violent behavior, commentators are continuing to double down on their hateful, fearmongering rhetoric.

It's enough to make anyone weep. I'd link to some of the nastiness out there, but really, all you have to do is read the news articles, look around facebook, and venture out into the community and listen to people talk and it's obvious that we in the autism community have so much more work to do to convey the humanity that is intrinsic and should be unquestionable to our autistic children, siblings, parents, spouses, friends, coworkers.

If ever there was a need to advocate for acceptance of people in all their diversity, it's now. And it's not just our autism community we need to be pushing for acceptance for. Neurological disorders labeled as mental illnesses (with all the negative, stigmatizing emotions attached to the labels) continue to be vilified. People coping with disorders like bipolar,schizophrenia, depression, and mood disorders are not people to be feared. They certainly don't need the additional baggage of having people fear them.

Mental health issues aren't new. They aren't rare. Every single one of us undoubtedly is either dealing with an issue personally or has a loved one or friend coping with one. Where support and acceptance are available to all those involved, outcomes don't have to be poor. Mental health issues and neurological delays and disorders don't have to be burdens to either the individual or the family. Suffering is not a necessity. Support matters. Being open and honest and accepting matter.

I don't know how we shut down the ignorance and the hate and the ugliness that is currently on display. I don't know that we can. All I know is that we can not give up the fight to bring light to the misconceptions that abound. All I know is that we must rally around our community and offer the truth of our lives as we face the challenges that society places in front of us. It isn't the neurological differences that are the biggest problem people face. It's the hate, the ignorance, and the lack of accommodations and acceptance.

My children are not violent. They are not aggressive. They are not scary. They are loving, happy kids who deserve none of the bullshit flying around about autistic individuals. So many of the autistic individuals I know are like my children, doing the best they can in a world not designed for them.

We don't know why Adam Lanza did what he did. We never will. Opinionated ignorant bigots looking for easy answers aren't likely to figure it out, but they'll be certain whatever answer they come up with is the right one. Life, though, isn't that simple, isn't that easy.

Recognizing that people are complicated, complex individuals with issues that may not be apparent to others is vitally important. Even more important is seeing the common humanity we all share and working to make sure that all people have the support they need and the validation that they are worthy and valuable and have something to offer their community.

We can't convince everyone this is true, but we can work in our way to make sure that our lives echo that belief system and hope that the ripples will be felt, that all of us making our own waves will create a sea change.



12/16/2012

How do you explain?

I've spent the weekend keeping the news off--working to protect my three kids from knowledge about what happened on Friday while trying to figure out how to share the news so that they aren't blindsided tomorrow as they return to school and volunteering.

I've read the blogs, news articles, statements on the shooting and the speculation that the shooter was on the spectrum. I've watched my facebook feed, not commenting, as friends deal with this incident in their own way, with some furious, upset, and unsettled with the speculation that the individual was either on the spectrum or mentally ill (two different things), with many of them focusing their disappointment and outrage on the blog by Liza Long in which the author writes openly of the difficulty in getting her beloved son the help he needs, the threats of violence he often makes, the need for psychiatric inpatient care, how he can change rapidly from sweet and calm to violent.

Some parents and individuals have greeted the piece with an amen that the issues of dealing with violent and aggressive children are being openly spoken about. Some individuals are horrified that the mother has written the piece, suggested that autism or another neurological issue is at the root of the issue.

Whiplash and whirlpools.

And none of it helps me explain to my daughters that they may hear about this at school. None of it helps me figure out how to convey what happened with the gravity it deserves without harming them. While media figures speculate about autism and lack of empathy, my three children who feel events as if they personally happened to them, who ache for those who suffer or hurt, will have their world changed by the words I say, their innocence shattered. And yet that shattering is nothing to compare with what the families of those who were killed are dealing with.

While pundits argue about gun control and mental health issues and autism and so many people put their spin on the horrible tragedy, families are forever torn apart in Connecticut. So many innocent children lost, along with the adults who taught and cared for them, so many families devastated.

And all the while whiplash and whirlpools as people line up on sides and try to out-talk the other side. Why can't it be a call to grieve and offer comfort and also, when there's been time to honor those lost, the opportunity to talk openly about both gun control and mental health issues? Why can't we discuss what the second amendment means, why "God in the schools" wouldn't change a thing when an armed gunman walks in off the street, how we talk about, with and to those with mental health issues?

Why don't we talk about the lack of training, the lack of support, the lack of facilities equipped to help children with severe behavioral issues? Why don't we talk about how far too often families are isolated and left to deal with loved ones with significant issues without adequate health care?

Why do we have to be all or nothing? Why do we have to yell at each other and use every incident to further our own agendas?

Why? Why are so many families dealing with the loss of their loved ones while so many others weigh in when they don't have all the information about the events?

How do we explain to our children that horrible, terrible things happen? How do we equip them with the strength and fortitude to continue to go out into the world certain that good people abound and that everything will be okay? How?

12/15/2012

Out of the Mouth of Babes...



The girls are participating in helping collect data on fitness for a grant their school received. This means every few months they wear a pedometer for a week and we have to record their steps each day. Keeping up with their pedometers isn't always easy or fun, so Thursday night, I told Rick he didn't have to do anything he didn't want to (Lil was supposed to wear the pedometer through Sunday while Rosie was done Thursday) and he could send it back with Rosie's.


This morning, Rick said something, and I reminded him that unless he wanted the girls sharing that at the school, he needed to take care of what he said in front of them since they had a tendency to overshare. Lily immediately piped up that she had shared what I said about the pedometer because her teacher wanted to know why it was coming back early.


So, of course, I was left with composing an email to the teacher to explain (?) her response:

Lily just shared with us that she explained why she was giving the pedometer back. Oh my--I hope you got a chuckle out of it--Rick's been responsible for keeping track of the pedometers and was getting frustrated with making sure they didn't get lost.
Perhaps not the best lesson for Lily to take away: "we don't have to do things we don't want to." I'll be working on clarifying that statement to her so she doesn't try to apply it to other areas. If she tries, she loves Big Bang and Howard having Penny tell Sheldon "It's a non-optional social convention." We simply use that with her and it gets compliance.

I recognize that I didn't apologize, but well, it's the truth: some things we just don't have to do if we don't want to. And that's also a good lesson to learn and one I'll be working on with the girls, too.

12/11/2012

Undercurrent Whirlpools: What You Can't See

Lately, I've been dealing with a free floating anxiety.  I say free floating, and I picture it as somewhere above me like a little gray cloud shooting little bolts of lightening at me, but in reality it is an undercurrent often pulling me down, leaving me feeling more than a wee bit helpless.

I've been having to work harder to breathe through it, to keep panic attacks from fully developing. It's there--the sucking feeling, the shortness of breath, the feeling that things are swirling out of my control.

Sure, I'm used to this, having had periods of intense anxiety and daily pulls and tugs of anxiety, but this time I'm at a loss. It's a constant undercurrent and I feel there's no good way to express it or mediate it. Maybe that's because this time, things truly are out of my control and I have no way to know how things will work out. There are undercurrents that I'm not use to, subtexts that I've not had to deal with very often and certainly not in my closest relationships.

In many ways, the way I communicate has been altered dramatically by having three kids on the spectrum--three kids who communicate without those whirlpools of unstated things that threaten to take a person down. My communication has changed to reflect theirs'. When the people you spend the most time with say exactly what's on their mind, it's hard to remember that other people don't do the same thing.

I like clear communication. I like knowing where I stand with people. I do not like subtexts and undercurrents, and so I have my free floating anxiety often threatening to topple me into full blown panic attacks. I suppose one solution is to directly confront and offer clear communication, which I do when I can, but that option is not always available.

It can be easy  to forget when one's gotten used to a certain style of thinking and communicating that other people can be drastically different. I suppose that those undercurrents and whirlpools go both ways, then, and it's a wonder that communication happens at all.

That does little at all to reduce the free floating anxiety, though--it just makes that cloud bigger and grayer and me feeling frakked either way.

12/07/2012

System Overload?

I don't know about you, but by this point in the school year (mine and the kids), I am on system overload. It's natural and normal--finals are next week, so I've got a lot of work ahead getting all the papers graded, the grades figured, and grades turned in. I've also got to set up the minimester class that will start in a week. No pressure, right?

I'll have a partial week "off" before the girlies are done--I mean, really, two half days don't really count, do they, as being at school? What is with the early release? No work is being done. I'd rather the girls just be home instead of the sham that they've had two school days. Oh, I get it--the school has to hit the magic number of days, funding is tied to attendance, blah blah, but come on--that's two days that many families have to scramble for child care coverage and they just did that in November with those early release days.

Still, I long for the girls' two short but all too long weeks off--days where I don't have to get dressed, go out, can do my work from my recliner. Where I can listen to them chatter about My Little Ponies and Dragonball and Fruits Basket. Where I can hear Rosie tell me a million times a day that Christmas is this month and exactly how many days are left till the holiday. Oh, and of course, where Kathleen and I will be trying to figure out how to film more episodes of our blog ladies show--expect plenty of drop ins from the kids and creatures.

Naps. I'm looking forward to naps, too. And to catching up on all the novels I've had to let pile up-Nora Roberts, Janet Evanovich, Charlaine Harris, Kim Harrison, and more. And movies...stupid movies! All my favorite ones like Dude, Where's My Car? After a semester of heavy, weighty topics in my English classes and my life, I'm ready for fluff and laughs.

I'm looking forward to the break, even though it's not entirely a break, to the chance to recharge my batteries, restore my energy to tackle projects. And, believe it or not, despite system overload, I'm already looking forward to the spring semester and starting all over again!

May your holiday "break" be restorative and silly, too!

12/06/2012

Autism, Siblings, Victims: One of These Words Doesn't Belong

It's been a week since Barbara Cain's article on the siblings of autistic people ran at Time. In that time, bloggers have shared their insights and reactions to her article, to Time's choice of headline: "Autism’s Invisible Victims: The Siblings," and to her novel, Autism, the Invisible Cord: A Sibling's Diary.

There are so many things about the article itself that are striking. I suppose that the fact that a short essay can cause a week of reflection means, whatever Cain's intentions or Time's, the article is a success in that it has generated discussion in the community.

Are the invisible victims of autism really the siblings? Why is it okay to use that kind of language when discussing the effects of neurological delays and differences on the siblings of those individuals actually living with the condition?

Are there victims in autism? Isn't that a personification, harkening back  to that horrible PSA from a few years ago that Autism Speaks did?

Even if we move past the unfortunate title, the very first sentence gives us more to consider: is autism a "virtual epidemic"? Why do we have to be inflammatory? Yes, autism diagnoses have increased, but epidemic should be reserved for actual epidemics. I know, the use of "virtual" cuts that somewhat, but still, wouldn't a less inflammatory way to start have been something along the lines of "With the number of autism diagnoses significantly increasing, it's important to look at autism and its impact on not only the autistic individual, but his or her family members, as well. The impact of autism on the siblings has not been adequately researched"?

I think about this--this idea of siblings as victims--and I try to connect it to other types of neurological conditions like schizophrenia or bipolar and whether we would be comfortable in saying that siblings of those individuals are victims. Certainly, psychological and neurological differences in individuals not only make the individuals' lives more complex and often more difficult, but these issues also have an impact on family members. That doesn't make any of the individuals involved victims, though.

When one child has greater needs than another, it can be all too easy for parents to put greater responsibility on the unaffected child or to neglect that child's need for attention and instruction. It is not the affected sibling's disorder that creates the neglect or the "burden," but instead the parent's failure to successfully navigate the potential pitfalls involved in parenting children with differences. This is not to lay blame at the parents' feet, but it is important to realize that parental education and support can make a huge difference in how families cope with the unique challenges that different neurological and medical conditions can create.

Will life be challenging for the unaffected sibling? Yes. And it can hurt to see your brother or sister struggle, be bullied, and it can frustrate, too. We need to find a way for everyone in the family to safely explore their emotions and express them in an open, honest, adaptive way.

Ultimately, as siblings to individuals with challenges (whether they are those challenges created by autism, schizophrenia, bipolar, ADHD, addiction, etc.), victimhood is a choice we make. So are the feelings of anger, bitterness, and resentment. If you are an adult sibling and see yourself as the victim in the situation and are feeling these emotions, please seek out someone to help you work through those emotions and help you view your experiences differently. I say this as a sister who refuses to believe that my brother's issues in anyway victimized me and as the mother to three children with autism who sincerely hopes my three children will never look at their siblings in that manner.