ten hundred ways

 

 

 

 

 

Darby is currently our resident Thomas Alva Edison expert. Some may call him the Wizard of Menlo Park; but Darby calls him Al.  Apparently they’re tight, she and Al.

 

So almost every day last week I got a new tale about her buddy Al. Friday’s installment was the oft repeated story about Mr. Edison (er – Al) being interviewed for a newspaper story whose headline read, “Thomas Edison failed more than 1,000 (to be honest, she said ‘like ten hundred’)  times when trying to create the electric light bulb.” When asked about it, good old Al replied, “I have not failed. I’ve just found 1,000 ways that did not work.”

 

And so goes the story of Kindergarten Soccer – Take One. We have successfully found one way that did not work. 999 to go.

 

Kindergarten Soccer is a wonderful activity for little ones who will be entering elementary school in the fall. It’s a chance to get outside and get dirty. It’s a great way to get some exercise and to have fun being a kid.  It’s an opportunity to be a part of a team and to begin to understand what that means.  It is a time to begin fostering friendships with future classmates (and their moms and dads).  Kindergarten soccer is fun for the whole family!

 

Or not.

 

Kendall was excited to play. We did our best to prepare her for what to expect. We practiced with her. We have a goal in our back yard. She’s been kicking her little ball back there and running it up and down the ‘field’ for weeks now.

 

She was excited to wear the ‘uniform’. She had declared that she was going to be #2 (no need to tell her there are no numbers in kindergarten), just like Boots the Monkey on Dora’s Golden Explorer Team.

 

Have I mentioned the Dora obsession? One of the criteria for a diagnosis of Autistic Disorder includes an “encompassing preoccupation with one or more stereo-typed and restricted patterns of interest that is abnormal either in intensity or focus.” Yes, we checked off that box.

 

And so, the world of Dora the Explorer, and more specifically her sidekick Boots the Monkey, is part of our daily life. We have a love/ hate relationship with Dora and her friends, but they are an undeniable thread in the fabric of our lives. And hey, the girls are learning Spanish. There’s that.

 

And so it was that Saturday morning, we all piled into the car and headed to the field to play soccer ‘just like Boots’. Kendall got her orange team shirt and went running out into the middle of a trio of boys who were playing something that vaguely resembled soccer. She ran with them for a while, and then wandered off and sat on her ball near one of the goals. As the other kids started to stream in, I told her that she needed to move away from the goal so that she wouldn’t get trampled. She began to get anxious. I suggested that she kick her ball. She got upset. She turned and saw the kids coming onto the field. And then she panicked and tried to run.

 

I tried to .. well, I tried. I tried everything I could think of. And she ran, screaming as she went, “No Soccer! No soccer! Nooooooo soccer!”

 

I followed her to a hill on the outer edge of the fields. There, she found a big rock in a hole filled with dirt. She sat on the rock and began to dig her hands into the dry, dusty earth, as she said over and over again, “Dig, dig, dig! Dig, dig, dig!”

 

The kids on the fields had begun to separate into teams. The coaches gathered them up and ran some rudimentary drills. They were yelling and laughing and cheering each other on. And she was digging. “Dig, dig, dig! Dig, dig, dig!”

 

The crying ebbed and finally stopped. The digging continued. I sat with her and watched her claw at the dirt. I gently suggested joining the other kids which resurrected the “No Soccer! No Soccer! Nooooooo soccer!” mantra. So I sat at the edge of the hole and told her it was OK. I wondered, “Are we digging our way out of this hole or into it?” “Dig, dig, dig! Dig, dig, dig!”

 

She calmed down. She began to enjoy what she was doing. I took a picture of her happily playing in her hole. Eventually I coaxed her onto the playground overlooking the field. Soccer ended. And all the kids descended on the playground that had been our quiet haven. We took her ball and headed home.

 

I had a wonderful conversation last week with Kendall’s behaviorist. She had read my last post about how I imagine life for Kendall being very much like my experience trying to communicate in a foreign language.

 

She felt similarly and took the metaphor a step further. She told me that she often thinks of a trip that she and her husband took to France years ago. She said that she believes that life for children on the autism spectrum is as if they are visiting a foreign country, where they don’t know the language or the customs. She told me a story about trying to negotiate the trains out of Paris with her very limited French. She described the frustration that she felt and how easy it would have been to have given up.

 

She said she thinks about that when she sees our kids trying to interact with peers and others in their world. “It is easy to give up,” she said. Particularly when they come upon someone who is not particularly understanding about their lack of ‘French’; it’s easy to give up. And then she said the following,

 

“It is so important to have someone to encourage them to keep trying. That is how we learn French, so to speak. That is how our French gets better and better and the next time we try to buy those tickets from someone who isn’t the most understanding person, our French will be so awesome, it won’t matter. That person will understand what we want and will give it to us.  That is how we get to see Normandy.”

 

(Now you know why I am so grateful to have the people that we do in Kendall’s life. We are truly blessed.)

 

And so it is that we put our heads together and came up with Plan B. We have invited four children that Kendall knows and is comfortable with over to our house for the Wilson’s Introduction to Kindergarten Soccer. Orange shirts and all, they will play at our house and maybe we’ll build our way back up to the big field. And maybe we won’t. But according to Al, we have 999 more tries, right? And I’ll be damned if my kid’s gonna sit in a hotel room in Paris and never see the museums or the shops or the culture or the food all because she can’t speak French.

 

 

  

 

the fruits of awareness

 

 

 

Yesterday morning we had Darby’s parent teacher conference. It went amazingly well. My heart swelled with pride upon hearing, “She can strike up a conversation with anyone in the school! She is helpful and supportive with the other students without ever seeming condescending! She is a delight to have in class!”

 

As if to prove that she is indeed the angel in the picture we were all painting, she spent most of the 20 minute conference pushing her sister around the room on a little cart to help keep her entertained (and out of trouble). Kendall was having a ball.

 

At one point, they got a little overzealous and Kendall fell off the back of the cart. She was startled, but no worse for the wear. Darby helped her up and, once on her feet, she looked (almost) at Darby and said, each word painstakingly and individually articulated, ‘Thanks, Darby. You’re so sweet.” and then awkwardly ‘hugged’ her, meaning that she moved into her space with the side of her body and Darby responded by gently patting her arms in a tentative version of a hug.

 

It was warm and sweet and touching and each of us responded to it enthusiastically. So, of course, she did it again. In EXACTLY the same way. With EXACTLY the same intonation.  Punctuated again with the same awkward hug. And then again. And then the hug. And then again. And then the hug. And then again. And then the hug. We watched it unfold, smiling the whole time, simply thinking what a sweet and wonderful moment this was.

 

Later that night, I was struck out of nowhere by the following thought: “What did that scene look like from the outside?” And I started to recreate it in my head. I replayed it on my mental DVR (preceded by a warning, “running out of space! please delete any previous recordings you may not need”) and some other details came into focus. The first graders streaming into the room, the teacher watching the scene (I had assumed that she was nodding and smiling along with us, and then I realized that she wasn’t in the shot from this camera angle).

 

What must they all have thought about this odd interaction between two sisters? Why did they look almost like strangers unsure of how to approach each other (while I saw so much intimacy in the embrace that it almost hurt)? Why did Kendall keep repeating the same sentence over and over (and over) again? And when she did, why did it sound like a tape recording? Why did the words sound so precisely scripted, so unnatural? Why did the scene look so odd?

 

This is the school that Kendall will be entering in the fall. These are the kids that will be the second graders down the hall. This will be one of the teachers she will pass every day in the halls. What must they be thinking about her?

 

So many people that we know and respect put a lot of effort into ensuring that no one learns of their child’s diagnosis. They are smart, thoughtful people who adore their children and who desperately want to protect them from discrimination. And I get that. I totally get it.

 

Even after Matt and I had told our story publicly, I still had my reservations about ‘outing’ Kendall to those in her immediate world. I didn’t want her labeled. I never wanted her to be limited by others’ ideas and misconceptions about autism. More importantly, I never wanted her to limit her own expectations of herself.

 

And then we took a vacation last spring when Kendall was 4. We were down in Florida and I was watching her drift around the pool in a floaty, aimlessly wandering around the shallow end, like her own little island among various groups of kids playing with each other. She came upon three 5-6 year old girls who were enthusiastically pretending to be swimming princesses.

 

Kendall is a child who is incredibly (and, relative to her diagnosis, somewhat a-typically) socially motivated. It is heartbreaking for a parent to watch her attempt to approach other kids, particularly those who don’t know her. She obviously wants to engage other children, but she has no idea how to do it effectively. A year ago, she had even less of an idea than she does now. And so, what she did in order to try to join in the reindeer games was to tell the girls their names.

 

I’d imagine that it goes without saying that she didn’t actually know their names, but that didn’t deter her. She floated on over to them, insinuated herself right into the middle of their circle, and, with an outstretched little arm, she pointed at each of them in turn. “You’re Maya. You say, Hi, I’m Maya.” “You’re Fooey. You say, Hi, I’m Fooey.” And so on.

 

 I sat paralyzed at the edge of the pool. I had no idea what I was supposed to do. Do I smile and pull her away from them without explanation? Do I try to explain? What exactly would I be explaining to a group of 5 and 6 year olds? Do I jump in and somehow try to reshape this misguided attempt at conversation (which is what I would now do, but I wasn’t then prepared to do)? How do I save my child from the hurt that I see coming at her like an oncoming train? What the hell do I do?

 

As I sat there trying to figure it out, the little leader of the pack piped up and said, “My name’s NOT Maya, you weirdo! Come on you guys.” And with that, she and her little swimming princess posse turned their backs on my baby. I consider myself a good person. I love children. I’m an organ donor. I like rainbows and musicals and cuddly little bunnies. Yet it was all I could do not to drown that little %$@&*. I am not exaggerating when I say I actually felt my foot twitch (Step on her head! Do it!).

 

Do I think that girl was raised badly? Not necessarily. Do I wish her parents had helped make her aware that some children may have some behaviors that look a little odd to her? That she should respect other people’s feelings even when they seem ‘weird’? Yes and yes. But let’s be honest. We can’t expect the rest of the world to accommodate our children without understanding them.

 

My daughter does not always act the way the world expects her to. Her attempts at conversation can sometimes put other children off. But if they get past that, they’ll discover the most wonderful little human being that they will ever have the privilege of knowing. I believe that it’s part of my job to make sure that they know that.

 

In order to better understand Kendall’s experience, I search to find parallels in my own life to what she goes through. I think of how I feel when I travel to a Spanish speaking country. I have a decent Spanish accent, and I remember just enough from high school Spanish to be able to start a conversation sounding fairly competent. The problem is that’s all I’ve got. I know just enough to make people assume that I am a fluent speaker.

 

So they speak the way they normally would, which is extremely fast, words melding together and peppered with idiom. I am almost immediately lost and I start to get panicky because I can’t possibly keep up. My lack of vocabulary will always betray me in the end. My decent accent has done me a disservice.

 

One day after kindergarten parent orientation, I worried aloud to Matt about how the alpha moms at the elementary school might react to Kendall if they were aware that she has autism. “What if we tell them?” I asked. “What if we don’t?” he answered.

 

And it all came together for me. If your child were wheelchair bound, would you say, “I don’t want people to treat her differently, so I’m going to carry her to the playground and sit her on the swing so that she’ll look ‘normal”? By doing so, have you helped her? What happens when recess ends and it’s time to go inside? She’s stuck on the swing because she can’t walk. The gig will be up pretty quickly. That child needs a wheelchair to function. Kendall needs understanding, patience, and tolerance. She needs awareness.

 

A couple of years ago, I was with the mother of one of Kendall’s first friends from school. He is this wonderful little boy who has Down Syndrome. As we sat watching the kids play, I was amazed to find myself envying her the visibility of his disability. I was thinking that they had the luxury of people managing their expectations upon meeting him. People give themselves the gift of getting to know the truly delightful child behind the physical manifestation of his challenges.

 

Unlike her friend, Kendall does not wear her challenges physically. She looks like a beautiful, typical little girl. For her, autism is not a physical thing (coordination disorder notwithstanding). She doesn’t flap her hands or spin in circles, and although she loves being rocked, she doesn’t rock herself. Her lack of eye contact might send up a flag, but you’d have to be looking for it. She no longer sits in the corner playing with cobwebs (like she did for nearly 2 years, seeking them out in almost every environment and becoming consumed with them). She just looks like Kendall. But, like my Spanish accent, her appearance can do her a disservice. Her autism ultimately betrays her.

 

Awareness will always be a double edge sword. It is imperative to us to avoid saddling Kendall with a label. We don’t ever want her to feel that we think her autism is what defines her. But it would be far worse than naïve to think that it isn’t a part (a big part) of who she is. Autism colors everything for her (for us). We all look at the world through the lens of our own experiences, challenges and abilities. Like it or not, Kendall interacts with the world through the filter of her autism.

 

Do I think this will always be the case? No, I don’t. Adamantly, passionately, viscerally I don’t. All of our efforts are designed to give her the tools that she needs to thrive in the world (world(s)? hers? ours?). As she gains proficiency with those tools, she should (and will) be increasingly challenged to function with decreasing accommodation.

 

But where we are now, I want her to be as comfortable and secure in her world as she possibly can be. And that’s going to take some work. It’s going to take tolerance, understanding, patience, and love - all of which are the fruit of awareness. 

 

 

tea anyone?

I have been amazed to discover the many fringe benefits of writing this blog. In addition to the revelation that I find the process of writing to be cathartic in and of itself, there is so much more that I have gained from it. 

I receive a constant stream of e-mails and calls from friends and family.  I am profoundly grateful for the love, support, and true friendship of so many people in my life, some of them brand new to me, united by the commonality of our experience. I am blessed by all the people who have shared their own stories (turns out we’re not the first people in the history of the world to have struggled through a birthday party; who knew?) and I feel truly empowered by this newly forged sense of community.

In addition to the connections that I have made with so many other people, I also find that after I have written and organized my thoughts, I am able to learn from examining my own experiences. I find patterns in my life and my parenting that I may not have recognized otherwise.  If you’re familiar with ABA (applied behavioral analysis), a common and well-respected  method of teaching a vast range of skills to people with autism,  you will recognize the concept of collecting and analyzing data in order to anticipate and meaningfully change behavior. One of the central methods of ABA is the determination of what are known as the ABC’s of behavior – antecedents, behaviors and consequences. These often remain hidden until you start really paying attention to the patterns of cause and effect in your environment. So by watching for these patterns in not just my daughter’s behavior, but also my own, I start to see ways that I can avoid making the same mistakes twice (OK, let’s be honest, cause by now you’ll see right through me anyway. It’s so that  I can avoid making the same mistake 4 or 5 times; it usually takes at least the first 3 to find the pattern).

Taking this all one step further, I find that through forcing myself to really pay attention, I am becoming what I would call a better parent. Since I am more aware of the import of the small stuff, I feel more attuned to my children in general. I find that I am more ‘present’ when I am with them because I’m looking for the lessons in every experience. Sitting with the girls at the dinner table last night, I asked Kendall who her favorite teacher is (her beloved Joanie, of course). Darby then asked me who my favorite teacher is. Without hesitation, I told her that I had two – her and her sister.

So, thanks to this heightened awareness, I saw the morsel of joy that I might have missed when I carelessly hit the button on the coffee grinder with my elbow a few days ago.  Doesn’t sound like a big deal? Let me explain. To the mother of an autistic child with sensory integration disorder and extreme auditory defensiveness (this is why you often see autistic kids covering their ears) an errant coffee grinder is tantamount to an all out siege on the house. Think of standing in the middle of a roomful of fingernails on chalkboards – hundreds of them – all at once – oh, and you’re blindfolded, so you have no idea what’s happening. It’s something like that.

It made that awful whirring noise that a coffee grinder makes, and Kendall panicked, and ran to me, then away from me, then back to me, then clung to my leg like a frightened koala, then perseverated on that heartbreaking hooting noise that she makes that sounds like a frightened owl, then dug her fingers into my leg, then ran in a circle, then ran back to my leg, then managed to catch a ragged breath while crying and shouting ‘I don’t want to play with my bristle blocks!’ and I was able to find something to celebrate. No, seriously. Bear with me.

She looked up at me with her beautiful little tear streamed face and said, ‘The noise made me scary.’

OK, so the grammar was a little lacking, the syntax a little off, but let me make this clear. My daughter told me how she felt. She explained to me why she was upset.  She found and put together the words to convey quite clearly what was causing her distress. This was a HUGE moment. And I am not ashamed to say that I am so damn proud, not just of her, but also of the fact that I recognized it and celebrated it in the midst of the previously awful scene.  

I scooped her up in my arms. I whirled her around in a dizzying celebratory circle and I praised her up and down. And you know what? It made her smile. Heck, it made her laugh. And I laughed, and Darby laughed and came in from the den and joined into what was now a joyful chorus in the kitchen of ‘Great job, Kendall! We’re so proud of you!’

I once read this amazing letter on Autism Speaks. I am so terribly sorry that I don’t know the author’s name, as I’d love to give her credit here. It was written by a mom of a non verbal teenage son with autism. She told an incredibly touching story about her son reaching out to communicate with her and in it she said the following:

“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.” I will forever be grateful for those words. I keep them taped to my computer at work and I knock myself over the head with them when I forget how much the baby steps mean.  In that moment in the kitchen, I saw a miracle.

And then I unplugged that damn coffee grinder.

 

taking the bull by the horns

 

I rode a mechanical bull last weekend. No, really. And you know what? I kicked some mechanical bull butt. 42 seconds I lasted on that thing. For those of you (my friend Kelly, you know who you are) who don’t believe me, I actually have this on video. Yes, I do fall down when I bowl, but I stayed on that dang bull for 42 seconds or so help me. Anyway, perhaps a little background is necessary?

My fabulous, wonderful, delightful little sister (technically step-sister, but who keeps track of such things?) is getting married this month. I am incredibly touched that she asked me to be her maid of honor, and as such, entrusted me with planning her bridal shower and hen party (call it a bachelorette if you must, but I love saying hen party). I’m the only bridal attendant, which made it all a bit more challenging (read expensive), but also gave me the freedom to make unilateral decisions. (Anyone who has ever been part of a contentious bridal party knows why I bother to mention this).

Not long ago, my sister had declared that she had to ride a mechanical bull before she died, which made it a lot easier to plan the party. I find it hard to believe that NYC has only one mechanical bull, but I found it and built an evening around making sure that my sister and all her friends got a shot at it.

It took me 24 hours to process it, but I realized later that riding the bull was very much like caring for Kendall. It was a great metaphor for parenting in general, but the pure extremity of it drew what felt like an undeniable parallel for the parent of a child with autism.

The bull would buck and drop and change directions without warning. It would move completely counter intuitively. There were these ecstatic moments when I felt the incredible high of knowing that I really ‘had’ it. I was in the groove. It was an amazing rush, feeling like I could hold on and follow this huge bucking machine – like I had unlocked the key to the puzzle – as though I had found a pattern in what had previously appeared to be utterly random. It felt wonderful.

Then, Bam! The bull would violently shift and change direction and the horns would nearly hit the mat and it was all I could do to hold on for dear life so as not to be bucked to the floor. I was constantly shifting my weight, trying to counterbalance myself to stay astride. I needed to figure out how to feint left when the bull went right and to lie back when it lunged forward. I was learning on the fly, making it up and constantly adjusting as I went along.

Like the constant dance that we all engage in as parents, riding the bull was alternately exciting, exhilarating, frustrating, defeating and empowering, and ultimately enlightening. I learned something about myself on that bull. I learned that I could do something completely beyond what I would have thought I could handle. I had the individual tools. I just needed to realize that they were in my shed and to use them differently than I’d ever thought to before. In the end, after 42 seconds, I hit the floor feeling simultaneously like I’d been in a car wreck and as though I were on top of the world. So much like the end of a day as a parent.

At the party, one of my sister’s friends very graciously thanked me for putting the festivities together. She looked at me with wide eyes and said, “It just amazes me how organized you are. How on earth do you do it? You are so together!” And then she got a little more serious, and as though there were no possibility that I could possibly say yes, she asked, ‘Do you ever get overwhelmed?’

I laughed out loud. A little too hard. I could see by the way the look on her face had changed that my nearly maniacal laugh was a little disconcerting. Was she kidding? I spend my life in Overwhelmedland. I’m there so often that I’ve created an entire language for the place. I often refer to the way that my brain functions these days as ‘triage mode’, which for those of you unfamiliar with the language of Overwhelmedland means quite simply that if it ain’t dying, it ain’t getting my attention. We also tend to rely on the old standard, ‘the wheels are comin off the wagon’ and its cousin ‘welcome to the yard sale that is my life.’ Another phrase we use quite a lot in Overwhelmedland is ’looking for the ripcord’ – something I find myself doing more and more lately. By the way, have you seen it?

But it was obvious that the young woman asking the question was also trying to tell me that she too was overwhelmed. And I was so grateful for her honesty. It made me realize for the second time in as many days (I’ll get to the first time in a minute) that we, as people in general and women in particular, have this awful propensity to look at each other as the negative of our insecurities. The more scattered we feel, the more convinced we are that everyone else has it completely together. The tougher our relationships may be, the easier everyone else’s look. The worse the state of our finances, the more everyone else seems to be ‘getting ahead.’

It frustrates me to no end because I think half the problem is that we all put up these facades for each other and everyone else is buying em. It’s a load of bull (pun so not intended; I’m just not that girl.) but we all see what we perceive to be our deficits in relief in the rest of the world, and it is usually just not the case.

My cousin wrote a letter to the family recently in which she detailed her struggle with feeling like she was losing the fight to ‘keep up with the Joneses.’ She talked about how she had become obsessive about those darn Joneses and what they had and she didn’t. It is true that there is always someone who seems to have more, or seems to have it all together when we feel like we don’t. There’s always someone with a nicer house or car or who is going on fabulous trips when we are staying home.

However, I’ve got to tell you, as I told my cousin; I know an awful lot of Joneses and a closer look usually reveals a lot of cracks in the facade. I was thrilled to hear that her 6 year old was able to remind her (slap her upside the head?) of the fact that what matters are the love, the strength, the faith, the generosity, the integrity with which she and her family approach the world and each other.

But back to Overwhelmedland –

I felt some obligation to impart some advice to this young woman who was opening up to me at the hen party (seriously, it’s just fun to say). Like my sister, she is marrying soon, and is, by her own admission, terrified – not about the marriage, which she feels completely comfortable with, but about what she described as leaping into the awful abyss of ‘grown-up-hood’. She looked at me eagerly, knowing I’d obviously survived the leap, waiting for some tips for getting by. Since I’ve written my own Fodor’s guide to Overwhelmedland, I trotted out a couple of my tried and true traveling tips.

Years ago, when I was in college (ok, so that was many, many years ago, but I don’t think we need to harp on that) I came upon essentially the same piece of advice in two different forms that I have found to be invaluable on my journeys through (and more importantly OUT OF) Overwhelmedland.

The first time I came upon this advice was when I had called my father from college. I was convinced that the world was imminently crashing down on my head. It was one of my first trips to Overwhelmedland and I found myself in the middle of the unfamiliar terrain without a map or local currency or any working knowledge of the language or customs. So, as I have so often in my life when I’ve felt lost, I called upon one of the most rational, capable, generous people in my life – my Dad. As I have so many times since, I asked for his help. And as he always does, he came through with loving, supportive guidance tinged with long practiced and well honed sarcasm. (This was the man who gave me a card on my 21st birthday that said on the front ‘at 21 life just begins’ and inside said ‘to suck.’)

Dad’s advice was deceptively simple, but I’ve used it time and time again over the many (ok, many, many) years since he first dispensed it to me. He said, ‘Take it one step at a time, kiddo. Break it all down into small, manageable pieces and attack one task at a time. If you step back and look at the big picture when you’re feeling overwhelmed, you’re screwed. It’s all about baby steps. One task at a time. Take it one task at a time.”

I’ve since added another step to that process, which is the celebration of the completion of each task. I try to remember to take a moment to say, “I did it. I accomplished something. I checked something off my list, or at least one of my umpteen lists. But I did it. I got one step closer to getting out of this place.”

The other, very similar piece of advice came from a speaker I heard at school that same year. In a rare exhibition of studiousness, I actually showed up, voluntarily, at a talk given by an Indian chief who had been asked to speak on campus. Truth be told, I was hardly the kid who would typically be found in the classroom even when I was assigned to be there, and certainly not one who would show up for extra edification without credit.

But when I saw the title of the chief’s talk, I was compelled to go listen to him. It was called ‘Moving Mountains.’ and I HAD to find out how an Indian chief would approach that topic. It’s funny, but when I initially heard him speak, I was actually somewhat disappointed. I took my disappointment as proof positive that my previous approach to these things (letting them happen while I was out with my friends or doing something vital like, oh, say sleeping till noon) had been just fine. It wasn’t until much later that I realized that I couldn’t have been more wrong.

He told the story of his ancestors who had been forced into unforgiving terrain and were desperately (not desperately as in, “I desperately need a new pair of shoes to go with this dress, but desperately as in life and death) seeking a place to settle. He told of the tribal chief who found his people at the foot of a mountain, their only hope for survival on the other side. He told us how the chief sought guidance from a Shaman. The chief told the Shaman, “My people are doomed. For the only way out of these desperate straits would be to move a mountain. And one cannot move a mountain.”

The Shaman corrected him. “One certainly can move a mountain,” he said. “How can that be?” the tribal chief wondered. “We are so small and the mountain is so large. There is no way that we could possibly pick it up. We are so weak and it so strong. There is no way that we could possibly push it. We are humbled by the great mountain, there is no way we could possibly go over it.”

The Shaman said to the chief, “You must look away from the mountain and turn your eyes to your hands. With your hands, you will move the mountain.” With that, he dug his fingers deep into the soil and laid the mound of dirt into the chief’s hands. He had taken the first step toward moving that mountain, one handful of dirt at a time.

Years later (yup, many, many years later) I still rely on the Indian chief’s words. I’m not sure when it was that I recognized the value of them, the weight of them, the desperation (somewhere in between the shoes and the life and death kind) with which I would seek them so many times over throughout my life. But eventually I did. And all these years later, they resonate with me when I feel like I am confronted by a mountain.

So no matter what it is that makes up your mountain, You CAN move it. Whether it’s an overwhelming week at the office, a relationship that needs work, a child that needs help, a pile of papers, or, let’s just say for argument’s sake, a month in which you must do your best to:

plan and execute birthday parties for both of your daughters (you know how one of them went), plan and host a bridal shower for 36 and a hen party for 24 for your sister (who you adore), prepare for your daughter’s initial transition meeting to kindergarten, review and negotiate a proposed IEP that is supposed to somehow be designed to cover the present, the summer and the beginning of next year, all while managing your anxiety (ok, terror) about her moving on to elementary school, write and deliver a speech for your sister’s wedding, try to predict and translate into a social story the events of an entire weekend of wedding festivities in an attempt to prepare your autistic daughter to walk down the aisle as a flower girl without shrieking and running away, accepting the fact that it’s ok if she shrieks and runs away, knowing full well there’s a damn good chance that she’ll shriek and run away, campaign for a tax override in your town that you know is the only hope of maintaining the level of services that all our children need and deserve, and to protect a fire station that you know your town will not be safe without, and to save the jobs of so many wonderful, dedicated people that work so hard for your children every day (at the worst possible time to ask families to find extra money to pay higher taxes), show up at work every day hungry and aggressive and focused so that I (oops, you) can keep your job in an increasingly competitive environment, all while finding time to be a mom and a wife and a daughter and a friend and a sister and oh, to periodically breathe.

Oh, sorry, did I get carried away? I left out a lot, I swear. But now you know why I laughed so hard when my sister’s friend asked if I ever get overwhelmed. Uh, yeah, I’ve been there. But if I can ride a bull, I’m thinking I can move the dang mountain, if only one handful at a time.

 

brother can you spare some time?

 

 

Matt took Darby to one of the first Red Sox games of the season the other night. I’m not sure who was more excited. (Ok, I am, but I’m not sure Matt would want me advertising that he was downright giddy about it). They looked forward to it for days beforehand. They went decked out in their jerseys and came home still chattering excitedly about the food (cotton candy!), the crowd and the ride on the T (and oh yeah, the game). In addition to a giant foam finger, they had the sleepy hangover to remember it by the next day.

Matt and I are keenly and sometimes painfully aware of the need to give Darby some extra attention and particularly some time alone with each of us to ensure that she knows how valued she is in our family. We do it in part (no small part) because she has a sister who, by nature, can demand a lot of us all.

Loving Kendall takes time. It demands patience and restraint. Caring for her, learning about her needs, practicing what we’ve learned, teaching her, re-teaching her, sensitizing her, de-sensitizing her, evaluating her, re-evaluating her, advocating for her (and discussing, analyzing, testing, and re-testing the best ways to do all of these things) – takes time.

Joining various groups, boards, committees, seeking, researching and piecing together the resources that will make our family functional for her – takes time. Attending (and staying awake through) and sometimes running meetings – takes time. Political posturing, campaigning and strategizing – takes time.

Writing (and rewriting) and delivering speeches on her behalf takes time. Preparing for IEP meetings, team meetings, reading and writing progress reports, overseeing and constantly evaluating her education – takes time. Heck, writing these posts to keep my sanity – takes time. So, we do everything in our power to carve out special time for Darby.

Last year, we joined one of Kendall’s ABA therapists on ‘Courtney’s Crew’ for the Autism Speaks Boston walk. It was a wonderful experience for the family. We decorated t-shirts for all of us (Kendall’s favorite color – red, of course!) emblazoned with ‘Team Kendall’ across the back. We were joined by our dearest friends and supported by an unbelievably wonderful network of friends and family. We raised a staggering $17,000 for Autism Speaks and we were thrilled. On that day, our family truly was ‘Team Kendall.’

Which got us to thinking. How could we show Darby that we were also ‘Team Darby?’ That you don’t have to have special needs to feel special in our family? So we decided that we would celebrate ‘Darby Day.’ A day in the life of the Wilsons would be dedicated to Darby alone.

We sat down with our calendars and mapped out the next available Sunday (I’m not going to pretend that it wasn’t a good 6 weeks out .. welcome to our world) and we began to plan what Darby Day would look like. We told her that (within reason) she could choose the events of the day from start to finish. We had to be clear that we retained veto power; this kid doesn’t think small. Had we let her have truly free reign I can guarantee that we would have spent Darby Day at the home of a very famous mouse and a few princesses we all know and love.

We agreed that as ‘Team Darby’ we should all dress in pink that day (even Daddy, Mama!). She planned her own outfit from head to toe in pink. To the earlier point that she doesn’t think small, when I told her she could have anything she wanted for breakfast I assumed she’d ask me to make her one of my not-so-world-famous ‘egg men’.  You can imagine my surprise when my little Eloise said, ‘Ooh, anything?  OK, I want to go to the Four Seasons for breakfast.’ Mercy!

After some tinkering, the day evolved into a true Festival O’ Darby. It started with a ‘decorate your own pancake’ breakfast, followed by a trip with Mama to the Hallmark store (to pick out yet another Webkinz .. Ganz, how I curse thee and your enviably brilliant marketing team!), then to the Four Seasons for lunch (by the way, a little Public Service Announcement: if what you order on a whim is not on the menu at the Four Seasons, ask how much it’s going to cost .. turns out my off board lobster wrap was $40. No, seriously, $40. Yeah, I nearly fell out of my chair), then a trip to Mama’s office (where we logged in the aforementioned Webkinz) and then home to switch off to Daddy for dinner at Chuck E Cheese. By the way, in case you’re thinking it, I swear I did not (knowingly er, um consciously, er, hmm, well, purposefully) orchestrate Mama getting the Four Seasons and Daddy choking down frozen pizza and playing whack-a-mole at a place named after a giant mouse. And if you talk to Matt, please help me try to convince him? I’d do it for you. Anyway ..

It was a wonderful day and we’ll do it again sometime this year because it’s so incredibly important to us to spend that extra time and do these kinds of fun things for Darby. We used to worry that Kendall was missing out on many of the great things that we were doing with Darby in our effort to create extra time for her. We knew full well that many of the events were things that would be very difficult (understatement alert!) for Kendall anyway, but it’s our job to agonize over these things, right? Right.

Darby has had some amazing experiences in her short life. I’m both proud and gratified that our hard work has provided her with so many great opportunities to see and do things we never dreamed of as children her age. She has been to some great restaurants ‘the best are the ones that are so fancy, Mama, that you can’t understand a thing the waiters say’. She’s been to Broadway plays (Mary Poppins! Annie! The Lion King! Twice! – OK, don’t ask – Oh, and while you’re convincing Matt that I didn’t really mean to stick him with that whole Chuck E Cheese thing, what do you say we leave this one out of the conversation, shall we? Meaning let’s not remind him that Mama went both times and he STILL has yet to see the Lion King, ever – great, thanks – She’s been to the ballet, Fenway Park to root for our beloved Sox, NYC for tea at the Palace .. Bottom line, the child has seen and done a lot. I must say, though that the great majority of the time we spend with her is far more low key than all of these things would imply. I swear, it’s not as bad as it sounds. Our best moments are usually on the floor in her room having tea parties or out collecting sticks in the yard or snuggling up on the couch to root for our favorite American Idols .. Oh, come on, you can admit you watch it too!  Too much? Maybe. That’s another day’s discussion.

But in the midst of constantly feeling the pressure of ensuring that Darby has enough time with us, something struck me about the whole situation. When I realized that Matt was taking Darby tonight (it’s usually me who takes her on these adventures. Yes, like the Lion King. Twice.) I got very excited about the prospect of my ’special’ night at home with just Kendall.

We are so focused on making sure that Darby has our time, but what about Kendall? Yes, I do know that I just spent the better part of this post detailing all the time devoted to her. But all of those things I talked about take time FOR her. They are not about spending time WITH her. I guess that’s why I’m so excited about this gift of some free time tonight with no purpose, no event, no agenda, no objective other than enjoying my baby girl.

So, when all is said and done, I guess I’ve just identified yet another challenge – making sure that we have time with Kendall to just BE. That’s Ok; we’re up for it. We just have to find the time.

lines, lines, everywhere there’s lines

 

 

 

 

 

 

 

I walked into Kendall’s room last night and let out a big sigh when I saw the long, snaking line of magnetic pieces that she had taken from a book and lined up so meticulously on the floor.

One of the earliest signs of autism in our home came in the form of lined up toys. We noticed that Kendall lined up her figurines, showing no interest in playing with them in any other way. She made 6 foot long ‘towers’ of legos along the floor, balking when we tried to help her to turn them into any other kind of object. Magic markers were not for drawing, but they worked well end to end to make a long row.

I remember sitting with the speech therapist that first suggested that we have her evaluated at a nearby autism center, which at the time threw me into a tailspin. She asked us all kinds of questions about Kendall’s typical play and for the first time, I realized the commonality in the way she approached so many different kinds of toys. They all ended up in a line.

The better part of 2 years later, we have spent endless hours working with her teachers and ABA therapists to break the pattern wide open and offer and encourage so many other, more typical ways to play with her toys. She has grown so much and has broadened her repertoire exponentially.

Looking around the house, you’ll find picture schedules on and around many of her toys displaying 3 or 4 different ways to play with them so that she can avoid the line-up rut. These days, she sometimes uses voices for her figurines, or puts them all on a bus for a trip (they always seem to be going to New York or CVS, go figure!) and, with some help,  she’ll make a train now with her legos. She’s even started to draw people with the markers ~ you don’t think gold gilt frames are over the top do you?

And yet, all that progress aside, there are still the moments like last night when her natural propensity to create order in her world takes over. And for a moment, I have to ask, “Is that really so awful?”

I spend so much of my own time trying desperately to organize the chaos in my life. Don’t we all? I contort myself to find order in the mayhem. I have schedules, lists, filing cabinets, all to try to keep my ‘ducks in a row.’ And then, in those delicious (and rare) moments when I feel like I have it all under control, doesn’t it quiet some of the noise?

So is it so outrageous that Kendall wants to order her world in a way that makes her more comfortable? Is it so debilitating? While we will, of course, keep doing everything that we can to encourage her to expand her play schemas, I’m thinking that the next time I find her toys in a line on the floor, I just might let out a much smaller sigh. Heck, maybe I’ll even make sure it’s nice and straight.

 

 

 

 

success

success n. the achievement of something desired, planned, or attempted. the extent of such gain.

I caught a few minutes of Dr. Phil the other night before bed. The feature story was a hyper controlling, perfectionist mom who had devoted her life entirely to (and was admittedly, and almost proudly, living vicariously through) her 18 year old daughter. Now, I know I’m a control freak (so I still lay out my 7 year old’s clothes for school, sue me) but this woman was seriously over the edge. You know, like over the edge enough to be featured on Dr. Phil. You get the point.

So, in trying to get to the crux of the problem, Dr. Phil asked her what her definition of success was for her child. She stuttered her way through her self-justifying rationalization of an answer and then he offered his own. He said his definition of success for his two sons has always been for them to have the ability to walk into any situation and feel comfortable, secure, and confident, no matter where they are.

The night after Kendall’s birthday party, I was having a tough time (you know, like Sissy Spacek’s Carrie on prom night kind of ‘tough time’). In the middle of a fairly violent, wheels off the wagon melt down, Dr Phil’s words came back to me and they hit me like a ton of bricks.

I couldn’t agree more with his definition of success for children. I have always prized self esteem and have done everything in my power to ensure that my beautiful daughters recognize and truly believe in their own self worth. If a child is secure in their abilities and comfortable with themselves, they can take anything on. And if they fail, they will know that does not make them failures. They will know that they can try again. They will know that anything is possible.

But Kendall cannot walk into any situation and feel comfortable. It is my understanding that most autistic people cannot. It is certainly my understanding that most people with sensory integration disorder cannot. Anyone fighting constant, overarching anxiety cannot.

We can and will continue to help Kendall find strategies to manage her constant anxiety. We will give her the tools to handle social interaction. We will teach her tricks to assuage the sensory overload that she faces day in and day out. Though, God-willing, facing the world will become easier than it is now, I don’t know if it will ever be ‘comfortable.’ So, perhaps I need to tinker a bit with Dr. Phil’s definition of success, or at the very least take a less strictly constructionist view of it.

Last week, Matt and I met with the coordinator of Kendall’s behavioral therapy team. She proudly showed us a video that they had taken at school of Kendall walking with the other kids in a line, progressing from the ABA room to the hallway. I was waiting for something to happen, wondering exactly what the therapist was so excited to show us. Perhaps they were headed somewhere really cool. Perhaps some amazing morsel of expressive speech was coming.

And then she said it: “It took us months of pre-teaching to get Kendall to walk in a line with the other kids, but look! She’s doing it! Look at how she keeps pace! Look at how she follows the direction of the person in front of her! Look at how she stays focused! Look at how she stops when they stop. Look at how she’s doing it!” The line itself was the victory we were celebrating. The journey itself, completely independent of its destination was success.

Profound as it seemed, I decided that wasn’t ‘it.’ It was part of ‘it’, but there was more. And then last night, as I was putting Kendall to bed, it all came together. I’d say that I found it, but I didn’t. Kendall found it, or already had it, and she handed it to me.

Like we do every night, we read a couple of books, sang her favorite lullabies and then cuddled and hugged and rolled into the covers. She said her prayers and nuzzled her face into her pillow to sleep.

And then it happened. As I was about to walk out of her room, I got right up next to her ear and whispered, “Mama loves you baby.” And sleepily she said into her pillow, “I know.”

And there and then, I decided that not only did I know what success meant to me, but I knew that I had achieved it.

the $240 balloon animal (that wasn’t a monkey)

 

 

 

So I paid $240 yesterday for a balloon animal. And it wasn’t even a monkey. Kendall thought it was, though its creator was the first to admit that it had an EXTREMELY strong resemblance to a dog. Perhaps I should back up a bit.

As we approached Kendall’s 5th birthday (and by approached, I mean we were about 4 months from. Let’s just say Mama’s a little anal about planning parties) I asked her, as I always have, what she’d like to do for her party. Now in the history of Kendall’s birthdays, she’s never really seemed to understand the concept, and has never shown the slightest interest in helping to plan a party. So, that being said, I was floored when I brought it up on a drive into town and she made it clear that she had a plan in mind.

I had thrown out a couple of suggestions (the Little Gym? My Gym? Plaster Fun Time?) which were each shot down with an unceremonious ‘No’. Since no’s usually lead to dead ends, I wasn’t sure what to do next. I gave a shot at an opened ended question (not usually a wise idea) and said, almost to myself, ‘Well if you don’t want to do any of that, what are we going to do for your party?’ Imagine my surprise and delight when she firmly answered, ‘My party would be at home.’ 

I was so thrilled that she had an interest and seemed to have put some thought into this! Oh my gosh, I thought … we’ll have to have some kind of entertainment. Yes, I know how pathetic that sounds. What ever happened to the good old days of pin the tail on the donkey and a good old scavenger hunt? Yes, I know. I’d love a return to those days too, but life is a little different in our world. Here’s why.

Kendall is still in preschool. These are the days where we invite every class member, lest we leave anyone out. Besides that, I have to admit that I am so incredibly thrilled that Kenz has connected with some of the children in her integrated class, I want to do everything in my power to help foster those friendships. Sooooo, everyone it is. I just never thought of any other option. 

Kendall’s ‘class’ is actually made up of two different parts. She spends 3 hours a day in an integrated room where a little more than 1/2 the kids have some sort of special needs and the other (almost) half are typically developing. She then spends the next 2 hours in an ABA based social pragmatics group with other children on the autism spectrum.

So, add those kids together, plus 2 others that are ‘friends’ because Mama and Daddy went through a ‘basics of ABA’ class (that became a defacto support group) with their mommies and daddies for 12 long, emotionally draining weeks, and what do you have? 24 kids, at least 2/3 of whom have some sort of special needs. Therefore, what you also have is a mom who has no idea how to get that group to line up for a rousing game of pin the tail on the donkey. So, that leaves me suggesting some local entertainers.

I suggested her new favorite children’s singer. No. Hmm. How about a clown? No. A magician? No. Uh oh. Then, almost rhetorically, ‘What are we going to do with all these kids at home for your party?’ And again, as though she’d been waiting to say it, each word slowly and precisely articulated, “I would have Big Joe at my party.”

Big Joe is a fabulous kid’s entertainer that she saw when the PTO had brought him in to do his thing for the kids at school. He’s this delightful story teller who comes with a trunk full of puppets, a repertoire of silly voices, and a wonderful connection to the kids.  Well, I was over the moon that she had something in mind (an interest! an opinion! the words to tell me!) so off I went to secure Big Joe. 

Big Joe on retainer, handmade invitations on their way to all (gulp) 24 kids (and one favorite teacher!), the theme secured (Dora Halloween. Yes, Halloween. In April .. problem? I didn’t think so), cake designed, pizza ordered, house decorated to look like an ad for Nick Jr, 3 long tables and 24 little chairs rented, and we were ready to go. 

We had set up the basement for the show and then planned to bring everyone upstairs for pizza and cake. Big Joe had the fantastic idea of making balloon animals for the kids as they filed in to keep them entertained before the show began. So, our proud birthday girl was first in line to get her balloon. Big Joe said, ‘OK, my dear, I have loads of animals I can make for you. I can make cats, dogs, bunnies, swans, snakes (hmm, I can make a snake I thought, just hand her the balloon), hats, horses and giraffes. So, of course, when he said, ‘So what would you like?’ she said, ‘A monkey.’ So he ran through his list again. And when he said, so which of THOSE would you like, Kendall?’ she got to say it again. ‘A monkey.’

Now here’s the thing. Kendall has some very consistent favorites, and, as is typical of a child with autism, she can be pretty particular about them. Color = red, Shape = star, Number = 2, Letter = Y, Animal = yeah, you got it  - monkey. So, she wanted a monkey. Anyone else thinking of that kid in The Wedding Crashers saying,  ”Make me a bicycle, clown.”? Anyway, I digress.

Now Big Joe knows his audience and he confidently assured us all that although what he was about to make would have a striking resemblance to a dog, our little princess would absolutely love her ‘monkey.’ And he pulled it off beautifully. Ah, the power of suggestion. So she walked away happily clutching her monkey dog. Then the room began to fill. (Cue the doom doom ~ drama about to ensue~ music from Law and Order).

As the low ceilinged room filled, it became a sensory overload nightmare. The noise level skyrocketed. The kids ran from one end of the room to the other, children screamed for their parents, parents excitedly greeted each other. Kendall did what Kendall does. She shrieked and ran upstairs crying. We thought it wise to let her stay upstairs in the relative quiet and wait for all the kids to gather and get their balloons and then, when things calmed down and everyone was seated for story time, we’d head back down and join the party. We sat in her favorite chair and I sang in her ear to calm her. 

So, for the first 20 minutes or so, Kendall’s party carried on downstairs without her. We broached the doorway to the stairs a couple of times but she balked immediately at the noise. But hey, it sounded like our guests were having a great time. 

OK, time for the stories .. The big moment. The realization of my baby’s vision of her party. Big Joe. Telling stories. At home. With all her friends (and Joanie the teacher). Deep breath, here we go, Honey. You’re OK. Down the stairs. Mama will hold you. It’ll be OK. The kids are sitting nicely. But they’re laughing. Hard. And they’re wiggling around. And they’re gesturing along with Big Joe. And they’re shouting out excitedly. And the parents are laughing along with them in delight. And it’s her worst nightmare. And she panics. And runs. And we are upstairs. Again. And the party is going on without us. Completely. And she is shaking. And crying. And my heart is breaking for her. And for me. We sit in the chair. Again. I sing in her ear to calm her. Again. There are tears streaming down my face meeting hers. She curls up on me in the chair and rests her face on my chest. A mom walks into the room and tells me later she mistook us for a mother nursing a baby. I tell her that’s essentially what we were.

We can hear Big Joe from where we are. I encourage her to listen. At least maybe we can be a part of her party from here. I try to bring us to the door at the top of the stairs to listen better. It’s too close to the noise. She freaks, perseverating on the number 17. 17! 17! 17! We retreat. Again. Back to the chair. Again. I sing in her ear. Again. I comfort her. And me. Again.

Another little girl is now upstairs too. She can’t handle it either. I pass her mom in the hall as I hold Kendall, bouncing slightly as I sing. I’m holding a 5 year old, but I know that I look like I’m soothing a colicky baby. I pass another mom whose husband is walking her son around the neighborhood because he too had to escape the room. She sees my red eyes and quietly says, “This is what we do.” I feel better. And worse.

The show is coming to an end. Earlier, I had heard Big Joe telling the kids he was going to dress up as a princess in the last story. I’ve got it – a hook! I know she’ll want to see that. I sell her on it. She wants to give it a shot. We make it to the landing. We’re past the door. She hasn’t screamed. We’re making it down the stairs! This might work! I catch Joe’s attention and signal him to try to take the volume level down if he can. It’s too late. The kids are having a ball. They are laughing. They are yelling. They are having the great time we hoped they would. And all I want is for them to shut up so my sweet baby won’t lose it. 

She’s in the circle! She’s sitting! Wait, someone jostles her. She’s looking around. She’s not comfortable. She’s getting anxious. I can see her body starting to tense. Damn it. She’s in an all out panic. It’s been 45 seconds and she’s yelling. And kicking. And looking up at me through tears, panicked, screaming at me, “I don’t want to stay!’ and it takes me a minute to piece together the words and understand her. And then I do. And then we’re upstairs. Again. in the chair. Again. And my heart is breaking for her. Again. 

The show is over. Big Joe is packing up. And the kids are thrilled. And I’ve essentially just paid the nice man $240 for a balloon animal for my baby girl. So for heaven’s sake, please don’t tell her it’s not a monkey.