Tuesday, January 31, 2006

Creative problem solving

Tonight as we were getting ready for bed, I decided to throw a little pretend-play chaos at Bud. I climbed up onto his stool at the sink and announced, "I'm ready to brush my teeth, Mom!"

"No, I'm not Mom," he said. "I'm Bud."

"I'm pretending," I said. "You be Mom and I'll be Bud. I'm ready to brush my teeth, Mom!"

Bud paused, considered the situation, and developed a strategy before he spoke.

"Say, Bud?" he asked.

"Yes?" I replied, eagerly awaiting the rest of his question.

"Can you be Mom?"

Humbled

I'm humbled and overwhelmed by the outpouring of support and the depth of understanding that followed my last post. Thank you all. I'm sorry that you understand so well; but I really am thankful that we've all found each other.

Sunday, January 29, 2006

Stealth grief

Today during the coffee hour after our church service, an older man I'm very fond of approached me and said, "I was watching you during the service. I'm going to give you the same advice I give to my daughters when they need it: it's time to take a deep breath."

He didn't elaborate, and I didn't ask him to. I thanked him for the advice, and acknowledged its wisdom and timeliness. He told me it was the sort of wisdom that comes with age, and he smiled and walked away as my throat tightened and my eyes pooled with tears.

So there it was. I'd wondered where it was. I'd been fooling myself for the past few days into thinking that it must be packed away in a box marked "The Past," but apparently I'd been carrying it right out in the open the whole time.

I call it "stealth grief." It's the phase of grieving that gets the least amount of attention and airtime. It's what happens when the grief is no longer a gaping open wound that you couldn't hide if you wanted to, when you have gotten through the aching, screaming pain, and when the good days finally - and by far - outnumber the bad. It's stealthy because you don't always see it coming, and because it emerges in new and different ways that you don't always recognize.

At least that's how it happens for me. Sometimes I don't see it coming because it pops up out of the blue - like when I hear that Julia Roberts has given birth to healthy twins, or when a woman in her blissful first pregnancy asks me if an amniocentesis hurts, or when people talk about their children's bond as siblings. Other times, I know it might be coming because of a date on the calendar - Mother's Day, for example. Or January 27.

Eight years ago on January 27 I had a baby girl. She was born with severe spina bifida and hydrocephalus when I was about 18 weeks pregnant and she was too small to survive outside my body.

Seven years ago on January 27 I found out that I was pregnant again. I later found out that I was carrying twins, later that one of the twins had mild spina bifida and hydrocephalus, later that the affected twin had died at full-term in utero, and later that the surviving twin had autism.

As you might imagine, for the past eight years January has been a difficult month. At first, the grief was right there on the surface, easy to identify and impossible to conceal. I talked, I cried, I wrote, I read, and grieved and grieved and grieved until some time had passed and the open wound began to heal. But the subsequent Januaries have been trickier: I spend the better part of the month each year wondering how the anniversary will affect me this time. Will this be a wracking-sob year? Or a reflective-but-peaceful year? Or will this be a stealth year, when grief slips on a disguise and makes me think it's passed me by, only to jump out and grab me when I least expect it?

I never grieved Bud's autism in the way that I read about people grieving after getting a diagnosis. I understand what people experience - the "death" of the dream of the neurotypical child you thought you had, and the adjustment to the reality of the wonderfully complex child you actually have. Maybe it's because there was not a startling "moment of diagnosis" for Bud, but rather a slow-paced, evolutionary unfolding of it. I'm not sure. Whatever the reason, the autism itself has never been a source of grief for me.

Bud's diagnosis did affect me in a different way, though; it affected me in a three-strikes-and-you're-out-of-the-baby-making-business sort of way. When Bud's brother died, the fear of spina bifida was daunting. We suddenly went from having a 1 in 1000 risk of having a subsequent pregnancy affected by it to a 1 in 20 risk. The idea that the risk was too great to ever try again was overwhelming. For a while. But somewhere, on some level, there was a competing thought: 1 in 20 means that there is a 19 in 20 chance that a subsequent baby would not have spina bifida. That thought floated around through Bud's toddler years, and I imagined that a day would come when I would pull it down and have a good look at it.

Before that day arrived, we discovered that Bud had autism. Since then, the reality has set in: a subsequent baby has an increased risk of spina bifida and of autism. Bud needs all of the time and attention and care that we can muster already. We would struggle to have time and attention for another child, even if that child were healthy and neurotypical. And the chances are great that the child would not be.

Bud will be our only living child. I have known that for quite some time. Known it. But, it seems, that stealthy creature grief has been lurking in the shadows for a while, getting caught in my peripheral vision but ducking around corners right before I've turned around to get a better look, making me wonder if my imagination was getting the best of me and there was nothing out there after all, slowly getting closer until - WHAM.

Wham. Out of nowhere, someone in church calls to my attention the things I have chosen not to see, and I suddenly understand why the blogs that have resonated most with me recently have been the sad ones; I recognize that the tightness and ache in my neck and shoulders is probably not bursitis after all; I become aware of the sensation in my body I had not even acknowledged - the one that starts somewhere behind my eyes and travels down to about my navel and feels like a blend of being bone-weary tired and of getting stuck in mid-sigh, unable to take it back and unable to complete it.

It seems that in this stealth year - the one in which my 40th birthday looms large on the horizon - grief has slipped on a new identity. I am not specifically grieving the loss of my daughter or the loss of my son. Instead, I am grieving my long-imagined idea of family, the one in which I have a gaggle of children whom I adore, and who adore each other. I am grieving the relationship that Bud will never have with a sibling. I am grieving the presence of the one person who will always be there for him, even when his father and I can no longer be.

And yet, even as I grieve, I can find the pockets of comfort. I can see the ways that the babies I knew so briefly have shaped my life so completely. I recognize the role they play in making me a better mother to Bud, in helping me to appreciate things about him that I might otherwise forget to notice.

And I experience more frequently and more acutely, in those fuzzy moments between awake and asleep as I huddle together with my wolf pack, the comfort that comes from the absolute certainty that one-plus-one-plus-one equals five, that there is a warmth we have generated that extends far beyond us, that there are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.

And so, I take the advice of my wise friend at church, and I breathe,

in,

and out,

my inhales and exhales in harmony and counter-point with the rest of my wolf pack. My family. We breathe, together and apart, and we huddle closer as time passes and the calendar, once again, allows us to move forward into February.

Thursday, January 26, 2006

What, that again?

A difficult night falling asleep. A request for water. A call for one more cuddle. And then a singsong "Mo - om!"

"What is it, Bud?"

"I always keep sleeping!"

"Yes, that's good, honey. You're supposed to be sleeping!"

Pause.

"I already sleeped!"

Sure, he may like routine and predictability, but really - must the poor boy sleep every night?

Wednesday, January 25, 2006

One thing leads to another

This week Bud had one of those days you never want to end.

He looked up from his supper, glanced out the window, and was dismayed to see that night had fallen and it had gotten dark.

"Oh no," he lamented. "Bed is starting!"

Tuesday, January 24, 2006

She's a hit!

I have posted previously about how much I adore Bud's teacher, Mrs. H. Now you get a chance to see why.

This afternoon, following the hitting incident, I gave Bud some time to unwind after we got home from school, then said "Bud, I'd like to hear about what happened at school today."

Much to my surprise he said, "I hit."

"Who did you hit?"

"I hit Mrs. H."

We talked about how Mrs. H. felt about being hit (angry and sad), and I asked him if he thought he might hit again tomorrow at school. He said "no," so we talked about what else he could if he got angry. Here's what we came up with: use his words, clap his hands, take a breath. And then we practiced together fake-angry-face to fake-angry-face: "I feel angry." CLAP. Breathe in ... breathe out.

Bud grabbed onto it, and even recounted it to Nana a couple of hours later, so I sent an e-mail to Mrs. H. so she could use it as a starting point at school tomorrow. A short time later I got this fabulous reply, which she has kindly agreed to let me post:

Hi there - first let me preface this with that fact that I am still in my "processing" stage of the day. It's when I spend my "chore time" reflecting on what has happened in the day and what I need to do, or not do. I will apologize right out front, because I will be doing some of my processing "outloud", and you can certainly chose to ignore any or all of it.

Bud. Bud is an ever evolving child, no different , in so many ways, as the children I have watched evolve for the last 27 years...I started young ;) . Yet, he is so vastly different, as has been each child with whom I have worked within the spectrum. Bud is Bud, and there is no escaping that. His evolution hinges on both where he falls on a particular day within the spectrum, and where he is developmentally. I am not an expert, I am a practitioner - my practice is observing children, loving them, encouraging, and nudging them....all in the name of learning.

Bud's hitting response seems to me to stem from different avenues. It is a new tool which he has discovered, and now must learn how to use. It was a matter of time, I believe, before he discovered the "power" of hitting/kicking. With this action there is power, and response. It appears that the notion of these actions was activated by a recent video, but again I believe it was only a matter of time. The slight changes in his daily routine could have an impact on this new behavior, (specialist schedule changes, you on the couch), but in the long run, these small changes have not impacted him in the past - I know, it could now.

The issue at hand for me is not "should I address this", but rather, "how should we all address this?" There are a couple of issues at hand. First there is the actual hitting/kicking. Bud is brilliant in that he has chosen to adapt these inappropriate behaviors at perfectly appropriate times - when someone is in his "territory" (dollhouse, computers, cars. legos, my lap - especially when it's being occupied by another child in my room who is also on the spectrum), or when the world is not going "his way" (ie - I would rather just sit in front of the computer all day thank you Mrs. H., and please don't ask me to paint, draw, build, go to the bathroom, etc.).

With a child, not on the spectrum - these are daily, developmentally appropriate challenges - they just have quicker (easier?) access to coping tools. For these behaviors, we have developed a routine that appears to have worked very well: clear, consistent visual, non-verbal cues, clearly set/realistic expectations (when/then), declarative language, validation of feelings (Bud is angry/sad/worried. - "Yes". "Bud wants to shut down the computer." --"Yes"....(like everything else, I pick my battles - this is one of them. When he shuts down the computer, he thinks no one else should play on them.)

One of the first things I did was to read all the children the story, "If you're angry and you know it", and he loved it. Choices when you're angry were - walk away, tell a friend, stomp your feet, and >>>>take a breath...which we practiced a lot - sound familiar? I'll send the book home tomorrow. I have been trying to find a way to communicate my new expectations to Bud so that they will make sense to him. "Waiting and seeing" has never been my strong suit. Saying "No", or "That's not nice," just doesn't do it.

This leads to my next issue. I am not the only adult to come across Bud's path during the day. I spend a great deal of time advocating/instructing other adults in the optimal way to draw out the "real" Bud, and how to tease out all the "great stuff" in him. Fortunately, the majority of us are on the same page, so my job is easier. However, sometimes it takes just a moment of battle of wills - and it quickly becomes a lose/lose situation.

So here I am, still trying to figure out how I can follow Bud for the years to come, still trying to come up with the magic words which will help shape his behavior the way I want it to go (HA!), and keep him feeling like he is the bees knees, and the light in my heart that he is.

You know, a long time ago, I read somewhere that it takes saying something at least 500 times to a child to get it somewhat a part of their "working memory". Now, I know for a fact, I have spent the last two decades telling children in my house to load their own dishes...well over the 500 times mark - still not to total success. So, how many times am I willing to say - "Hitting/kicking hurts. Mrs. H. doesn't want Bud to hit."...I've got a lot of staying power.

Let me know what else you come up with, and I'll share this with the team. I'll talk to you tomorrow...so sorry so long winded! Get healthy! - Mrs. H.

Sigh. Don't you just love her?

The hits just keep on comin'

I wrote previously about Bud's new attitude and about him telling people he was going to hit them. It seems he's started making good on his threats, and we have a bit of a hitting and kicking problem on our hands at school. Though he is probably dysregulated when the hitting happens, it appears to be the sort of dysregulation borne of not getting his own way, e.g., it is someone else's turn on the computer and he'd rather not hand it over just yet.

We know that scolding and demands for obedience don't work. Reminders to use "gentle hands and feet" and that "hitting hurts" yield a quick (if insincere) "sorry," but have no lasting impact.

A social story?

Some sort of reward chart?

I know we need to do something soon, before Bud settles into this pattern of dealing with his frustration by acting out physically, but I just don't know what.

So, friends in Autismland, got any words of advice?

Monday, January 23, 2006

Somebody's been sleeping in my bed

Before I had a child, back when I was an expert on parenting, a friend of mine "confessed" to me that her three-year-old still climbed into bed with her and her husband almost every night. I don't remember how I responded, but I cringe at the thought that I probably launched into a no-nonsense directive on how to "Ferberize" the child. Internally, I was probably somewhat smug and thinking that she'd made her bed... so to speak.

A few years later we had Bud, and all my expertise about the "right" way to train a baby to sleep flew out the window. From the moment we settled into our room at the hospital, Bud made it clear that he was not interested in spending time in the bassinet. He wanted to be on a chest - mine or my husband's - where he could scoot in closely and sleep soundly. To be honest, my husband and I were as high-need for contact with Bud as he was with us. Bud's entry into the world had been bittersweet; his identical twin brother was stillborn. So, after nine months of having my heartbeat on one side of him and his brother's heartbeat on the other, I think Bud was frightened when he found himself all alone. And we parents, grieving the loss of one son, could not get close enough to the other.

So it seemed very natural that, upon arriving home from the hospital, we left the cribs empty and crowded together in our bed. The reference book I was using most, because it made the most intuitive sense to me, was The Baby Book by Dr. William Sears, who is a leading proponent of co-sleeping. Dr. Sears thought sharing our bed with Bud was a fine idea, and said that we could be sure that he would decide to leave our bed on his own when he was ready. All was happy for a short time, until everywhere we looked the news was full of warnings against co-sleeping. Having just lost one baby, I panicked at the thought of losing the other and immediately ordered this amazing product, which allowed us to continue to share sleep with Bud without taking any risks. When Bud outgrew the co-sleeper, we moved his crib into our room and he continued to sleep right next to me, though nearly every night he woke at some point and climbed in with us.

Dr. Sears wrote at length about the virtues of "nighttime parenting," and about responding to your child and being with your child to comfort him to sleep instead of trying to get him to self-sooth and learn to "cry it out". The philosophy made intuitive sense to me, especially in light of the loss we had all suffered. Crying it out might help Bud to learn to be more independent, I reasoned, but having just lost his twin he's probably already feeling more independent than he'd like to be. I feared that if I let him cry it out the message he'd hear would be "You're on your own, kid. Make it work." By "parenting" him to sleep, I hoped I was saying "You are never alone. You do not need to worry. I understand." I fully recognized that my need was as great as Bud's; when I returned to work full-time a few months later, my need to connect with Bud at night might even have been greater than his.

And so it continued, me cuddling with Bud until he fell asleep each night, then the three of us huddled together like a cozy little wolf pack, as the months turned into years, as we outgrew the Queen and purchased a King, until we woke one morning to find a big huge five-and-a-half year old in the middle. I consulted the Sears book again, looking for that chapter in which he assured me that my boy would be developmentally ready to move on to his own bed if we let him do it in his own time. Ah, yes, there it was. According to Dr. Sears, my son would be ready to do this when he reached the age of approximately ... three.

Ah.

I see. Dr. Sears had not accounted for autism when he made this prediction.

At that point I realized that this transition was probably not going to happen all on its own. I created a sticker chart - a cartoon picture of a boy sleeping in a bed, 5 empty squares for stickers, and then a picture of the payoff, a video that Bud knew darned well I wasn't buying any other way. I explained to him that any time he could fall asleep all by himself in his bed, he would get one sticker in the morning, and when he got 5 stickers we would buy the movie. I let him know that this was entirely up to him - if he wasn't ready to try, that was okay and he could try again another time. I also let him know that if he woke up in the night he could come into our room and he would still get his sticker.

It worked beautifully. I think it only took him 6 nights to get 5 stickers, and after a few more sticker charts (each a little longer than the one before) he was falling asleep on his own every night. But like clockwork, each and every night we heard a telltale thump-thump-thump as Bud padded from his room to ours, climbed up the foot of the bed, and squirmed himself into the middle.

We have just passed the one-year mark of Bud falling asleep on his own, and Bud still pads into our room every night at some point. Last night he climbed under the covers and sighed, "This is great." And the thing is, he's right; it is great. I don't have the words to explain it articulately yet, but on a gut level I just know that co-sleeping has made a difference for Bud. I don't think it has made his autism less severe; that's far too simplistic. But I think it has made us more connected. I think it has helped us to read each other better than we would have otherwise, to understand each other on an intuitive level.

In a chapter titled Our Most Important Discovery in her book Making Peace with Autism, Susan Senator described the pivotal moment when she began to understand Nat's need for connection. Kristina Chew at Autismland writes eloquently and frequently about her connection with her son Charlie. In blog after blog written by parents of children on the spectrum, I see examples of great things happening when they are able to connect. How we make the connections that yield success differs from family to family, but that we make the connection seems remarkably consistent. Like Lisa/Jedi, a fellow co-sleeper and recent addition to the world of autism bloggers, I believe that our connection with Bud was cemented with whispers and cuddles and giggles and snuffles amid pillows and flannel sheets.

And so, as Baby Bear said arriving home from his stroll in the woods to find Goldilocks in the house,

"Somebody's been sleeping in my bed ... and he's still there!"

Sunday, January 22, 2006

Anudderday closer to self-regulation

I recognized Bud instantly in a recent post on Autism's Edges, in which MothersVox explored her daughter Sweet M's difficulty with tantrums at the end of an activity that she's not ready to end, like being on the playground bridge by herself. She writes:

"But if I can find a way to help her know that she's not losing the possibility of that pleasure forever, then the transition can be easier. Tricks include consistency—though not necessarily rigidity—but also early warnings, and reminders that TV (or the bridge all to yourself) will be possible again, TV later, TV tomorrow. Aggressive language, a combative attitude, and demands for obedience—"TV off now, take your bath now!" would be completely counterproductive, because then her fear of losing the TV or the wobbly bridge for all time and eternity, would escalate. Parental, and pedagogical, cool heads matter so much."

This is so totally, utterly, and completely true for Bud.

Early warnings, in particular, work so well in helping Bud make transitions. Trying to get him to end his computer time used to be a battle until we figured that out. Now, all I have to do is say "Ten more minutes, Bud, and then it's time to turn off the computer and play toys," wait for the "Okay, Mom," and give him ten minutes to wrap up. At that point, he very calmly shuts down the game, powers down the computer, and walks away. (I have also learned that letting him bring closure to the activity himself is very important; it does not go well if I try to turn of the computer or - heaven forbid - we try to leave the computer on.)

MothersVox's idea of the need for kids with ASD to know that endings are not forever is also true for Bud; he transitions away from fun activities best when he knows he is not giving up his one and only opportunity to do them. For that reason, it is HUGELY important that I make sure that my actions match my words. Luckily, that was an important parenting philosophy for me even before I knew that Bud was on the spectrum; I knew that I never wanted to use "quick fix" solutions to make a transition easier in the moment unless I was fully committed to following through on the promise. I have always chosen my words and made my promises very carefully. Bud has not heard "If we leave the playground right now, then maybe we'll have time to get ice cream after supper," only to learn after supper that "It's too dark and Mommy is tired. Maybe tomorrow, Bud." I avoid answers like "maybe" or "we'll see" in the hope that after some time passes Bud will forget to ask again.

Because I have tried to be so consistent with following through I think that Bud has come to trust that if I tell him we will do something at a later date, he can be confident that we really will. (And I really believe he has internalized the value of a promise as well, which is why I wait for the "Okay, Mom," when I give him a ten-minute warning; I think that, when he is regulated, Bud follows through on his promises as well.) He has also come to trust that when I can't follow-through on something (because, let's face it, we can't always follow through) there is a good reason. So when we couldn't go to gymnastics this week because I was sick, Bud rolled with it beautifully and said "we go to gymnastics anudderday."

Even back when he first started using language Bud recognized that if, by catching me off guard, he could trick me into saying that he could do xyz, I would not reneg on the deal. So I would tell him it was time to stop playing computer and he'd say "Computer in-a morning," and I would agree, thinking that "in the morning" meant "sometime tomorrow." But there he'd be, bounding out of bed at 5:30 a.m. and heading for the mouse. And only then would I realize I'd been had.

I've become more sophisticated since then. But so has Bud. In fact, I now recognize that he uses our negotiations of future pay-offs as a tool for self-regulation. He knows that he will be able to stay regulated through a transition if he has the comfort of knowing that the pay-off will come. The typical transaction usually goes something like this:

"Oh, no! The computer game is broken."

"Yes, Bud, I think it is."

"We buy a new one at the S Store," (which is what Bud calls Toys R Us, for some reason.)

"We can look and see if they have one, Bud. They might not have it."

"Yes. In the morning."

"No, Bud, you have school in the morning."

"Tomorrow."

"No, honey, we won't be able to go to the S Store tomorrow."

"Anudderday."

"Yes. Another day. You got it."

"Anudderday" has become Bud's magic solution for maintaining balance and regulation. All is not lost. Mom said it will happen. I know it will happen.

Anudderday.

Saturday, January 21, 2006

Making Peace with Autism

I just finished Susan Senator's book Making Peace with Autism. I feel like I've gotten to "know" Susan a bit over the past few months, through the insightful posts on her website and blog and through her warm, supportive comments on my blog and others. As I expected, in her book as in the blogosphere she is thoughtful and engaging; but what really struck me about her most as I read chapter after chapter was just how honest she is.

In Making Peace with Autism, Susan invites us into the most private parts of her mind, her heart, and her family as she explores the effect that her oldest son Nat's autism has had on her, her marriage to Ned, and their family life with younger sons Max and Ben. She tells it all just as it happened, without euphemism and without gloss: her fears, her mistakes, her challenges, her anger. She gives voice to the feelings that so many parents of children on the spectrum must have, but are afraid to express because of how they might look to others: feelings of anger, grief, desperation, and hopelessness, all topped with a heavy dose of guilt for having those feelings in the first place (or, as Susan puts it, "feeling bad about feeling bad.") Susan's message comes through clearly: you can be angry and fearful and grief-stricken and desperate and still love your child with all your heart, still be a phenomenal parent.

Nat's autism manifests in very different ways from Bud's and many of the things that Susan has had to manage - aggressive behavior, uncontrollable tantrums, tutors and educators who refuse to work with Nat, and even violence - are not in my experience. I found myself thinking over and over, "this is one penguin who had to walk 70 miles AND confront a seal AND battle a predatory bird, and lived to write about it." It would be a valuable book if it were simply a memoir; however, Susan takes it a step further and provides sidebar information in a sort of "what I know now that I wish I knew then" way. She gives suggestions about very specific issues - preparing for an IEP meeting, deciding whether or not to use medication, surviving beach vacations, getting through the hard and hopeless days - not from the perspective of an expert, but from the perspective of a friend who has been there, has the benefit of hindsight, and is willing not only to spotlight and celebrate her successes, but also to expose and explore her mistakes.

And that is a very rare gift.

Thursday, January 19, 2006

Wednesday, January 18, 2006

Quiet reflection

Last night I had a tickle in my throat, and this morning I woke up with laryngitis. Just like that - out of the blue - no voice at all.

It's been a trying day. Aside from having no voice, I started the day feeling pretty healthy so I tried to do all of the things I normally do. By 2:00 I was so exhausted I was almost bleary-eyed. I happened to be reading an article about echolalia at the time and was really able to relate it to Bud's language development when it hit me: I've been struggling to talk for one day - really, for only 8 hours - and I am completely tapped out. Bud struggles to talk every single day of his life. That's when I started to see the parallels.

Obviously, speech is not a physical challenge for Bud, but the mental energy he needs to spend to try to string words together to make people understand him is at least as taxing for him as my laryngitis was for me. And it manifests in so many of the same ways.

Throughout the day, though I knew what I wanted to say to people I was continuously weighing the pros and cons of making the effort. Is what I have to say really that important? What if they can't hear me? It's easier to just say nothing. If I don't look at anyone, maybe no one will start talking to me and then I won't have to say anything.

Every time the phone rang, my anxiety escalated. Telephone communication is completely speech-based; I did not believe I could meet the challenge.

Often, when I did speak, people misunderstood what I was trying to say. It was frustrating. If I could have just carried around a tape recorder with a few choice phrases that I could play to people to approximate what I was trying to say, I would have.

As the day wore on, the effort began to take it's toll. I was emotionally spent and physically exhausted. When I came home and tried to tell my husband about my day, straining with the effort of slowly getting each word out until I had finally whispered the whole sentence, and his response was "What?" I wanted to scream and bop him on the nose.

I didn't want to talk to anyone. I wanted to be alone with my books, and my computer, and the things that bring me comfort.

Huh. Whaddaya know.

I'd better find my voice again soon, so I can get back to the work of helping Bud find his.

Monday, January 16, 2006

Night

Oprah Winfrey announced her latest book club pick: Elie Weisel's profoundly moving memoir about his life in Auschwitz, Night. I can't imagine a better choice.

Night is a short but powerful, life-changing book. I read it in one sitting in college because once I started it I was incapable of putting it down.

It's no accident that she announced her latest choice on the Martin Luther King, Jr. holiday. She said, "Like Dr. King, I have a dream of my own, too: that the powerful message of this little book would be engraved on every human heart and will never be forgotten again. That you who read this book will feel, as I do, that these 120 pages ... should be required reading for all humanity."

I couldn't agree more.

March of the Parents

I never thought about how much I had in common with penguins until I read a post by MothersVox on Autism's Edges and enrolled Bud in a gymnastics class that is designed for children with diagnosed disabilities.

We live in a fairly rural area where there are not many opportunities like the one presented by this gymnastics class, so despite the fact that the class is some distance away I did not hesitate to register Bud for it. When we arrived at the class I gave the teacher our address.

"But that's 45 minutes each way," she said, incredulously. "And the class is only 45 minutes long!"

"Yes," I said, considering for the first time that perhaps this had been a foolish decision. "But I really think he's going to like it."

"Wow," she said. "I'm impressed."

And Bud did enjoy it; in fact, he loved it. There are only three other boys in the class and though we didn't play "Name That Diagnosis," it was pretty clear that they were all on the spectrum. Throughout the class, though, the teacher made at least four more references to the fact that I had traveled so far to attend, calling it to the attention of others, and suggesting that perhaps I should sign up for the class right before it as well, to at least make the trip "worthwhile."

I started chatting with the teacher about the classes - there are three 45-minute classes being held each week for eight weeks, all of them for children with disabilities. I asked her if this was the first time they'd run a class like this, and she explained that she had approached the gymnastics center with a proposal for them. Her son is one of the boys in the class, and she was tired of enrolling him in activities only to have to withdraw after the first session because he couldn't manage it. She wanted to create a safe space for him, where he could be himself and where she didn't have to worry what other parents were thinking. So she created, and is teaching, these three classes so that he will have three opportunities each week to interact with peers outside of school.

And she thought *I* was going above and beyond by driving 45 minutes to be there.

I thought about it all the way home (and since I had a 45-minute drive, there was plenty of time to think) and was reminded of MothersVox's post, in which she draws the parallel between parents of children on the autism spectrum and the stars of March of the Penguins who withstand cruel conditions and overcome tremendous odds simply to give life to their young.

As I drove I began thinking about the fiercely determined yet gently-dispositioned penguins I'd seen in the movie just a few weeks earlier, and I began to imagine the conversations they had as they huddled together for warmth, turning their backs to the blinding snow.

"I just can't believe you walked the whole 70 miles to be here."

"Oh, that? That's nothing. What about you and that incident with the seal - that must have been terrifying!"

Why does that sound so familiar? Why are so many of us so quick to applaud the insight, determination, and plain old hard work of other parents, but just as quick to downplay our own? The penguins spend eight months every year enduring unthinkably harsh conditions; do they spend any time during the other four months just being proud of what they've accomplished?

Unlike the penguins, we don't spend eight months on and four months off. Autism is an all day, every day, every week, every month, every year, pervasive and all-consuming condition. Most of us will never arrive at the day when we can say we "beat it." For most of us, there will always be more to learn, more to try, more to consider, more to do, do, do. Despite that - because of that - we have to find the opportunities to celebrate our moments of determination and triumph:

the times we work for hours to fill 15 minutes,

the times we hurl ourselves between our children and the cruel comments from people who should know better,

the times we challenge our thinking and stretch ourselves to truly meet our children's needs,

and, yes, even the times we drive 90 minutes so that our children can participate in 45 minutes of gymnastics.

Thursday, January 12, 2006

Give me strength

I got a flyer in the mail the other day about a two-day conference being held in Providence, Rhode Island in March titled Identifying and Building Strengths and Nurturing Talents: The 11th Annual ASD Symposium 2006. The conference is co-sponsored by Barry Prizant, who led the team that developed the SCERTS model.

It's an interesting focus for an autism conference: building strengths and nurturing talents. It instantly made me think of two posts from Brett at 29 Marbles, from December and September. Brett's posts really resonated with me, especially this quote from Keith Ferrazzi's book Never Eat Alone (which Brett has read and I have not):

The trick is not to work obsessively on the skills and talents you lack, but to focus and cultivate your strengths so that your weaknesses matter less.

This makes intuitive sense to me. Let's say I struggle with math - the concepts just don't "click" for me - but I have a talent for languages. I have limited time and limited energy. I can opt to spend the bulk of my time and energy learning math. It will be difficult and the chances are good that I won't enjoy it, but I will make progress. The progress is likely to be limited, however; I'm probably never going to get an A in Differential Equations or pursue a career as a mathematician.

On the other hand, if I put that time and energy into languages instead of math I am very likely to become fluent in a foreign language (French, for example.) I am likely to enjoy it, and it is likely to build my confidence to pursue further opportunities for learning. It is likely to open doors to me that would otherwise have been closed - I might live in Paris, I might become an interpreter for the United Nations, I might become a French teacher.

Isn't the same thing true for people on the spectrum? And if it is, then why do we always seem to focus on the deficits and challenges? Of course we need to remediate the core challenges in autism, just as I need to develop the math skills I will need to balance my checkbook, figure percentages, and solve problems. But we also need to seek balance in our children's lives. Bud needs to work at the things that don't come easily - using spontaneous language, making interpersonal connections, developing executive functioning skills - but he also needs spend time and energy pursuing the things that come easily to him and feed his spirit: singing, drumming, playing music, working with computers and electronics, performing, swimming, and more. He needs to become functional in his areas of deficit; he also needs the opportunity to truly excel in his areas of strength.

So the symposium in March is exciting to me. The brochure reads:
This symposium is the first national forum to address the importance of understanding interests, strengths and talents of people with ASD relative to social, academic, vocational and leisure skills and settings. Presentations and discussions will focus on the importance of identifying and enhancing these abilities for people with ASD of all ages and ability levels in educational, community, home, and vocational settings.

The symposium's speakers include Temple Grandin and Stephen Shore. It will also feature a performance by 13-year-old award-winning jazz pianist Matt Savage.

As parents we already spend so much of our limited time and energy focusing on our children's challenges and deficits; this symposium offers an important opportunity to achieve a bit more balance and focus on the good stuff.

Wednesday, January 11, 2006

Nothing to sneeze at

I've been using an analogy lately that has gotten good feedback from both MommaD at Alphabet Soup and Bud's teacher that helps me think about the best way to work with Bud when he is dysregulated.

Lately, Bud has been experiencing more frequent moments of extreme dysregulation both at home and at school. The dysregulation often manifests in trantrum-type behavior - shouting, pouting, arguing, wailing, crying, stamping, crashing - and both at home and at school we often find that our initial instinct is to try to manage it with discipline. Unsurprisingly, this approach does not typically yield success; more often, in fact, it only makes the dysregulation more pronounced.

And so, as a reminder to myself and a roadmap for others, I've developed the allergy analogy of dysregulation. It goes like this:

Let's say that instead of having autism, Bud had severe allergies. Then let's say something happened that triggered his allergy and he was overtaken by extreme fits of sneezing, his eyes so watery he could barely see, his breathing shallow and wheezy.

My hunch is that no one would address the situation by scolding Bud and saying, "Now stop all of that silly sneezing and act like a big boy." No one would fault Bud; no one would assume that he was making the choice to sneeze and water and wheeze. Instead, we would help him wipe his nose. We would try to identify the allergen that was triggering the reaction and physically remove him from it. We would help him to calm down and breathe normally before we asked him to sit down and engage with whatever task he had been undertaking before the allergy attack hit.

Bud doesn't have allergies; he has autism. But just as if he were having an allergic reaction, Bud does not choose to become dysregulated. It is not a pleasant state of being for him; if he could regulate on his own without shouting, stomping, crashing, and arguing, he would. But he can't. He needs us to intervene - to remove him from the activity/person/environment that is triggering or complicating the dysregulation, to soothe and quiet him, and to help him regain an optimal level of emotional arousal before we ask him to sit down and engage with whatever task he had been undertaking before he became dysregulated.

If he had allergies, we'd head for the inhaler and the Kleenex. With autism, our best resources are a slow pace, declarative communication, and a great deal of silence.

Tuesday, January 10, 2006

I think it was a compliment

I am always looking for opportunities to foster positive feelings in Bud toward pets in general and dogs in particular, not because I especially want a pet, but because it would be nice to be able to accept invitations to more people's homes. So the other day when we were watching a Teletubbies segment that involved puppies and I looked over and saw a wide grin on Bud's face I seized the opportunity.

"I like those puppies," I said.

"Yeah," Bud replied, still grinning.

"Maybe someday we could have a puppy."

"No," he answered, watching the tv intently.

"Maybe someday we could have a kitty."

"No."

"Well," I prompted, trying to keep an open mind, "what kind of pet do you think you might like?"

Bud's eyes never left the screen as he answered matter-of-factly, "Just a mother."

Monday, January 09, 2006

My pants are shrinking

My dryer must be on the fritz.

I probably should have seen it coming, but with the holidays and the preparing and the celebrating and the visiting and the feasting, feasting, feasting, I was just too distracted to pay attention. And now all of my pants - even the ones that were a little baggy back in November - have shrunk.

I really must call an appliance repair technician tomorrow.

Netflix alert

If other parents of kids on the spectrum have lives like mine, then they know how challenging it is to rent movies. Well, the renting part is not really challenging; it's the renting-to-watching hurdle that sometimes seems insurmountable. I can't begin to count the number of times we've rented movies with the idea that we'd settle down to enjoy the film once Bud was asleep only to discover that this was one of his won't-fall-asleep-till-11:00 nights, or one of his up-every-half-hour nights. Inevitably, we'd return the movie unwatched. Sometimes we'd muster up a never-say-die attitude and keep it, only to end up paying three days worth of late fees for an unwatched movie. Less frequently, we'd stumble into nights when Bud would be snoozing soundly by 8:30, but we'd find ourselves with nothing to watch and no late-night movie rental place nearby.

Then we discovered Netflix. Netflix lets us keep three movies at our house for as long as we want them. They don't care if we keep them for a month. They don't care if we watch them in 15 minute clips. We still don't watch a lot of movies, but when the desire to watch one intersects with the ability to watch one, we always have a new movie at the ready. Such was the case the other night, when we watched a delightful film called Dear Frankie.

Netflix describes the movie this way:
Faced with the prospect of raising her son, Frankie (Jack McElhone), with a good-for-nothing man, Lizzie (Emily Mortimer) spirits him away to Scotland and pretends the boy's father is aboard the HMS Accra. After years of pretending, including sending Frankie fake letters detailing his dad's adventures, the jig is up when Frankie learns the ship is docked by their home. Now, Lizzie must find a man to pose as Frankie's father … fast!

The description really doesn't do the movie justice. It doesn't mention, for example, that young Frankie is deaf. Now, I recognize that the "special needs" factor coupled with the "jig-is-up" Netflix description makes the film sound like a tedious, predictable Lifetime television movie. Luckily, however, Dear Frankie is able to walk the fine line that allows it to be heartwarming without becoming maudlin or saccarine.

The characters are realistic and engaging; the plot is intelligent and moving. And, in the end, it sends a message that can't be sent enough or in too many ways: never, never underestimate a child simply because he has a disability.

Rent it. You won't be disappointed.

Sunday, January 08, 2006

'tude

Bud's developed a new verbal style. Here are a few examples.

Example 1: My husband watches as Bud attempts to scale the back of the couch. "Careful, there, Bud," he calls out. "You'll hurt yourself doing that."

"That's what YOU think," Bud mutters in reply.

Example 2: We are browsing in a toy store deciding how to spend a gift certificate. "Look, Bud," I say, holding up a toy. "Isn't this neat?"

"Actually, mom..." he says, dismissing me. (The unspoken end to his sentence is, of course, abundantly clear: "that is so uncool.")

Example 3: We are driving home to pick up my husband before we head out for dinner.

"I want to go the restaurant," says Bud.

"We have to pick up Daddy first."

Heavy sigh. "Whatever."

This can only mean one thing: my sweet little boy has started giving me ATTITUDE. It's rude. It's annoying. It's, it's, it's...

It's so neurotypical!

It may not be my favorite milestone, but it's a milestone all the same. There's a limit to my tolerance of it, though; I'm absolutely dreading the day when he starts calling me "dude."

Wednesday, January 04, 2006

Testing and triumphing in Dragonland

We've got a new obsession at our house right now: it's Dragon Tales all day every day. I have to admit that I brought this on myself. I've been trying to move Bud away from the Teletubbies and toward more plot-driven children's programming. He's had a long-standing relationship with Zoboomafoo, Sesame Street and Blues Clues, and has had passing flirtations with lots of other shows on PBS and Noggin, but the Tubbies remain his One True Love. But I was determined to keep this Christmas Tubbies-free, and I couldn't bear the thought of bringing yet another Blues Clues or Sesame Street video into the house, so this year I went with Dragon Tales. I got a little playset with the Dragon tales characters (dragons Ord, Cassie, Zak & Weezie - the two-headed dragon, and Quetzel; he has since added two Fisher Price dolls to play the roles of real children Emmy and Max), a cd of Dragon Tales music, and a video that has three little Dragon Tales stories on it.

Bud was thrilled.

Since then, it's been All Dragon Tales, All The Time. He loves the video. He even loves the opening production sequence that shows the logo for Columbia/Tri-Star (the Columbia lady with the torch and the Tri-Star Pegasus, which he calls "the mom statue" and "the horse statue"... and, of course, he would like to own these two statues, please, Mama, please.) All things considered, it's a pleasant obsession and a nice break from Tubbie-talk ("Eh-oh, Dipsy. Eh-oh, Laa-laa. Ook! Whassatt?")

This morning, however, about half an hour after I dropped him off at school I got a call from his teacher. He was in the special ed room and she wanted to have a chance to talk to me out of earshot from him. She was concerned because he got angry and told the classroom aide he was going to hit her.

Ugh. Dragon Tales. In one episode on his video, Max hits his friends when he doesn't get his way. The teacher-figure, Quetzel, teaches Max that hitting is not a good way to solve problems and gives Max lots of other, better strategies. Unfortunately, the moral of the story is not the part that stuck with Bud. The hitting part, though - that was a whole different story: Hitting??? I never thought of that! Cool! (Lesson learned: Be careful what you wish for. The Tubbies may talk like babies, but they are impeccably well-behaved.)

I gave Bud's teacher the context and we did some problem-solving. She explained that this is actually one example of a larger pattern she is seeing lately, and she has a hunch that he has hit the developmental stage that most kids hit around age 4: I-am-my-own-independent-person- and-who-are-you-to-tell-me-what-to-do. And then, because she is such an amazing Kindergarten teacher, we brainstormed and schemed and got on the same page and ended the phone call with a pretty good plan in place.

When I picked Bud up from school later, I didn't say anything about the "I'm going to hit you" incident. But as we pulled away from the school, I heard a sad little voice from the back seat say "I'm not going to hit you, Mom. I'm not going to hit you." I told him that was a very good thing, and that hitting makes people sad and angry. He was quiet for a moment, then said "I love you, Mom. Can you turn it up?" (Translation: "I'd like to end this conversation and listen to music now.")

I tried to bring it up gently a couple of other times during the day, but he wasn't having any of it. He reported that he was happy all day, his teacher was happy all day, and the aide was happy all day. End of story.

So I spent a good chunk of the afternoon wondering if innundating him with Dragon Tales had been a bad idea. But after dinner, Bud let me know it wasn't when he led me through the pretend play adventure of a lifetime. He created an elaborate story, and used totally unscripted language as he explained his role and my role and the characters and the plot: he JUMPED into Dragonland, and he told Cassie "we need to find the Mother Statue in her blue bathrobe and the Horse Statue" and Cassie said "The mother statue is somewhere" and Cassie said "Do you want to jump on my back?" and he said "Sure!" and then he rode on Cassie's back and I rode on Ord's back and Daddy and Nana and Papa watched us and - NO! - Daddy rode on Zack and Weezie's back and Nana and Papa rode on Quetzal's back and we flew all over Dragonland and...

It was amazing.

His eyes were sparkling, his excitement spilling over, his little arms flapping so hard he could have flown without the aid of a dragon. He could see it - and he could make me see it, too. He made it up as we went along, he altered the plan when he had a better idea, he improvised when he couldn't find the prop he needed. We set up his sensory integration swing and he climbed up with his Ord doll to fly over Dragonland so he could find the missing statues, and he talked and talked and talked. I even threw a little chaos into his creation just to see what would happen: "Bud, if you ride on Cassie's back, where is Emmy going to ride?"

Bud didn't even blink before he responded, "Emmy rides on Bud's back - come on!"

Bud fell asleep quickly tonight, having safely rescued both the Mother Statue and the Horse Statue. My heart is still beating a little fast, though. I'm not as young as I used to be, and it's the first time I ever rode a dragon.

But I can't wait to do it again.

Monday, January 02, 2006

Now You See Me

When I started this blog, I thought I would use it to write about a lot of things ("raising a son on the autism spectrum, progressive politics, pop culture, and coffee addiction.") But in the blog, as in life, everything else tends to fade into the background as autism takes it's solo position on center stage. It's nice, then, to have some time off from work around the holidays to be able to continue to think, write, listen, practice, and do all the regular autism things and still have a little time for something else. So this week I've enjoyed long stretches of time with some very good books; one in particular seems worthy of a mention.

I have long been a fan of the mystery whodunit, starting back when I discovered Nancy Drew, the Hardy Boys, and the Bobbsey Twins. For several years in Bud's infancy (before I had autism to occupy every waking moment), I indulged in mysteries like they were candy - until I discovered that, as with too much candy, I'd had so much that the thought of reading another could almost turn my stomach. So now they're a once-in-a-while treat, and I try not to waste the splurge on any old two-for-a-dollar chocolate bar.

For that reason I was thrilled when my husband returned from a trip with the Godiva of mysteries for me - the latest release from Rochelle Krich, Now You See Me. Krich writes mysteries that are easy to devour. The plots are tight, the characters are believable, and the writing is interesting. Perhaps instead of Godiva, though, it would be more appropriate to consider Krich's novels bags of Chanukah gelt, because in addition to being enjoyable stories of suspense, they also provide a fascinating perspective on the culture of Orthodox Judaism. In Now You See Me, as in most of Krich's previous novels, Judaism is both central to the plot and peripheral to it, in that it provides both pivotal plot points and the color and detail that make the characters real.

Now You See Me is the fourth installment in Krich's Molly Blume series, which centers on a crime reporter who is married to an Orthodox rabbi. In this latest novel, Molly works with the family of another rabbi whose teenage daughter has purportedly run away with a man she's met on the internet. The novel explores the many pressures that young people - not just those from strict religious backgrounds - face in the world today, and is a thrilling, suspenseful read. And for those fans who, like me, miss the police-detective-focus of Krich's previous Jesse Drake series, Now You See Me provides some welcome surprises as well.

So, Kol ha'kavod (kudos) to Rochelle Krich on another terrific novel - one that has given me Shavuah tov (a good week.)