The Tao of Roo

What does it mean to have autism?

What does it mean to have a child with autism?

By now, you might expect me to have some insights. Not only have I been thinking about these questions as they pertain to those of us here at Casa del Rooster for the past five years, but I have cultivated a community of people with autism and their families, and many have been grateful enough to share their own insights with me.

And still, I have no great understanding about the meaning of autism.

Then again, I have no great insight into what it means to be one particular race, or religion, or profession. I only know what it means to wake, and work, and walk, through this life that is mine, and to see each event, each day, each person, as I see it, through the filters of my own feelings and the lens of my life experiences.

There is no one autism. There IS only one Rooster. He is my little boy, seven years old, impossibly cute, and I love him. I do not know why he has autism, but every maternal instinct I have tells me he was born roostery, that he has always been who he is, that autism has been part of his package since day one. I can't define his autism for you, and it makes me uncomfortable to categorize people by their "functioning" level, like they are competing appliances. But I can tell you this: people who do have a singular image in their mind of what autism is often find my boy surprising. They often don't know what to make of him or of many of his friends or of my friends who are "on the spectrum."

And to be honest, while I find the word spectrum somewhat satisfying in its representation of infinite variety, what exactly is up with the singularity behind "the"? I mean, I find myself saying, "Rooster is on the spectrum" and thinking: Well, who isn't? When I really think about it, it stops making sense. I buy into the notion that there is a continuum to human sexuality, so I believe all people are somewhere on that continuum because there are no asexual people. When I say we all have special needs and fit into a spectrum of personalities and behaviors, that's not me trying to make my boy sound more typical, that's me confessing I have no idea what typical is, and owning that I'm certainly not it, even though I don't have autism.

Very soon, a new school year will begin. With it will come eighty-six gajillion opportunities to discuss with teachers, parents, kids, and strangers that my son has autism. They will look to me to help them make sense of it. Sadly, I imagine that I will be of very little use in that department. But I will tell about my boy. I will tell them he is seven, we call him the Rooster, and he's good and some things, great at some things, and challenged by some other things. When he struggles, we like to help him find ways to use his strengths as leverage for success. When he feels upset or sensitive, we model coping mechanisms and make sure he knows he is safe and loved. When he makes poor choices, we try to help him learn for the next time. When he does well, we celebrate a lot. Maybe telling people all that doesn't help them understand autism on any deeper level. But my son is not autism.

Backpack Essentials

I remember finding a closet to duck in so I could talk on the phone. The inclusion specialist had called to talk to me about the Rooster's difficulties in school. He seemed to have some understanding about phonics, she thought, but she could glean no evidence of number sense. He had multiple needs, fragmentary attention, and precious little time for services. What did I want her to prioritize?

Deeply grateful for her interest, efforts, time and talents, I said, "Here is what my gut tells me. He needs the math support more. But if you can teach him to read, I think he will read to learn. He came out of the womb loving books. I say you focus on reading."

I remember dialing my husband next, whispering, a tear in my throat. "Honey? It's me. Do YOU think he will learn to read? Do you think he can?" We had to wait and hope, but my intuition told me a boy who loved stories as much as mine would persevere.

I remember taking him to the ed therapist who took one look at his deplorable handwriting and wanted to work on writing and reading. We have one of the best ed therapists you can find for kids on the spectrum - she just finished her Ph.D. and she used to be a behaviorist; she is charming and tenacious and can tame wild beasts, plus she has amazing toys and the most robust sticker collection I've ever seen. "I know you know more about this stuff than I do," I told her. "But this kids has no number sense. Zero. Nothing. His amazing inclusion specialist isn't there any more and no one at school is making any headway with our boy and math. Do the math. Help him gain number sense. Besides, he already loves to read, and I can help him with all the language issues. You concentrate on numbers."

I have no illusions that school will be easy for my son. At seven, he still has the number sense of a kid half his age. But the ed therapist is moving the needle. We see progress. And he's learning to read well enough that it will not be long until he's reading to learn. As I type this, he's pretending he has gone to bed, but I see the light under the door and I know he's cuddled up with a book about a little boy whose mom is president.

I have never been an expert on autism, but so far my gut instincts seem to know how to help my Rooster.

You think I'm talking to you? No, this is the pep talk I give myself as the weather cools a tad and people begin to talk about QBs and new lunch boxes. I feel fall coming, and if I didn't give myself this pep talk right now, anxiety might be the next feeling to dawn.

When September comes, I hope all you special needs parents out there will join me in listening to our instincts. Gut instincts and hope -- my back to school essentials.

Sitting Out

Even in the toughest of economies, I have often been surprised that people are willing to babysit my children. As my husband and I return home, dread begins to pool in my belly, and I cringe as I strain to ask, "How were they?" It stuns me each time our gifted sitters tell me they had a fine time, and sometimes my shock compels me to want to overpay them. Once in a while I've had sitters tell me my kids went to bed early, after making a picture, playing a game, listening to a story and brushing their teeth without any fuss, and I've wondered if I returned to the right house. I've suspected some of my sitters of sorcery or hypnosis, and I have been humbled in the face of their superior child charming strategies.

Don't get me wrong: I have worshiped my babies since before the first time I kissed the top of their funny little heads, and I Mama Bear with the best of 'em. But if I am totally honest with you (and I am compulsively honest) my children usually seem to me like the kind of kids that, if they weren't my own, would cause me to suspect inadequate parenting. From where I'm sitting, as the parent in question who works day and night to try to do what is best for our family, I tend to want to blame genetics a little higher above me in my family tree for my kids being willful, wild, and impulsive, but I would add that autism probably deserves some credit as well. My kids are not perfectly behaved with ANYONE, but they sometimes can be cute and charming with pretty young sitters they don't see that often, or they can be holy terrors for those very same sitters who somehow love them regardless.

That is all a very long introduction to today's headline. We just had our first sitter quit on us. It shocks me that it has taken this long. Truthfully, I would not want to babysit my children! And yet I didn't take it all that well. In fact I'm still not taking it all that well; thank goodness for blogging so I can get it out of my system.

See, we don't usually get sitters so we can have fun. (I THINK I remember fun.) Unless it's our anniversary, a date night is rarely involved. But sometimes we both actually need to go to work, and yet also take the kids somewhere else at the same time. So this week, I arranged for one of the sitters we have used before to drive the kids to Rooster's ed therapy, then get them to camp. For the bargain shuttle rate of $55 thank you very much. Plus twice as much for the therapy, of course. But we could at least go to work on time. At the end of the day, when my husband picked the kids up from camp, the camp staff members sought him out. They wanted him to know that they observed my children behaving uncharacteristically aggressive with one another as they entered the campus, with Peach scratching and hitting her brother, and even leaving marks from her finger nails on his neck as they both screamed at one another. As they watched in shock (my kids have had no problems at camp that I know of), my disgusted sitter marched off, leaving the camp counselors to regain control.

I expected to hear from the sitter, but I didn't, so today I emailed her. I said I heard my kids gave her a tough time and I wanted to know what happened.

She wrote back and told me that the Rooster is not the problem, that he follows her rules and usually makes good choices, but she doesn't want to babysit for us anymore. She doesn't want to endure Peaches' disrespectful and rude behavior, and she doesn't want to be responsible if Peaches hurts her brother. I wrote back and said that it's fine if she doesn't want to babysit in the future, but yesterday she already WAS responsible for my children and all reports indicate she simply walked away. And with that, friends, we are down one babysitter.

Believe me, I deeply understand the urge to turn and walk away when my kids get like that. I have felt it myself many times. But I hired this sitter because she had some experience with special needs kids and she is getting her teaching credential. Before she worked for us, I invited her over to observe them, and I gave her FULL DISCLOSURE. Sure, we get just as fed up with Peaches, but in this case, what about my boy? What about keeping him safe? And she thinks after a couple of hours with them once every few months that SHE feels overwhelmed? Really?

And why did she not contact me, but wait to cancel our next babysitting appointment (in two weeks, in case you were interested in filling in?) when I asked her what happened? Is that her plan when she has her own classroom? Or her own kid?

We used this sitter when our other gifted and amazing sitters were not available, and so luckily we still have them (J, J, A and M, for instance) to call upon in the future. It isn't losing a sitter that has me down. It's just -- well -- losing a sitter does have me down. You know what I mean?

Forget the Mainstream Media

Sick of bad news? Me too. So I'm taking a different angle.

Lately, I've noticed my seven-year-old Rooster hitting the kind of milestones you might not be able to appreciate fully unless you love a child with special needs. So, I bring these jewels to you, hoping to find an audience who will understand the unabated joy in some of these less-than-typical milestones. Give us a shout out, will ya'?

- While out of town for a reunion, Roo tells me, "I miss my Iron Man costume. Where is it? I have not seen it. It's LOST..." I say, as I often do, that it's not lost, it's just not here with us. It's at home. Then, he floors me. "What part of the house is it in? Maybe we can find it later."

- While visiting with his infant cousins, he patted them on their heads and told them they were beautiful. Then, he looked at his toddler cousin whose hair has grown long and lighter than it used to be. "Do you remember when her hair was dark, mommy? I miss her dark hair."

- A few times a week I ask my little guy how much two and two make. Almost every time he counts on his fingers. This has gone on for about 14 months or so. Last week I asked, and he kept his hands in his lap. "Still four!" He beamed at me.

- My boy started to read in first grade, but about 20 times slower than his teacher would like. He. Sounds. Things. Out. At. His. Own. Roostery. Pace. An "I Can Read" Book at Level 1 could take all night. In the past few weeks, he's sprinting along at a new pace. And forget just sounding things out, he read "laughed" and "peace" without pause. He read about 6 books before bed and still went to sleep at a reasonable hour.

- Monkey bars represent an enormous obstacle to my low-tone boy, but he made it across three rungs the other day for the very first time!

Maybe only some of these make any sense to you, so let me just say my boy is showing signs of developing temporal understanding, better abstract reasoning, more ability to plan, more interest in others, improved strength, and improved academic skills. We feel like his most recent eye surgery has helped his vision and his visual perception. And he's getting cuter all the time, reaching a level of almost impossible cuteness.

So isn't that awesome? Much better headlines than you are going to find elsewhere this week, if you ask me.

Lottery Winnings and Losings

In previous posts, I mentioned a situation we have been dealing with regarding school placement, and this weekend that drama unfolded in a way that leaves us facing another decision.

Maybe you have some wisdom that might help? We welcome all thoughtful and supportive insights.

Here is the basic breakdown as I see it of a very complicated situation.

• In March, we put the Rooster's name on the Open Enrollment list at a school I'll call The W that we heard is more "autism friendly" than the school he attended in kindergarten and first grade. This other school, we hear, has a more actively involved special needs parent body, more active parents overall, a beloved resource teacher, and a very strong principal. We assumed we would not get in, the way you assume you probably aren't going to win the Powerball, but it's surely worth a buck to try.
  
• In May, we had our IEP. The Roo's current school generously agreed to increase all kinds of services for our boy, mostly because he struggles so much with math and he has extremely slow processing skills. Oh, yeah, and monumental ADD. But every person at that table, without exception, acknowledged what a great boy he is, and that he is bright and charming and learning a lot, with help...
  
• In June, the W called and said we had won the lottery, (and no that is not a metaphor I'm extending, it's an actual lottery where they supposedly draw names at random to be FAIR) and that our boy would be able to attend their school. Thrilled, my husband and I rushed over to sign the papers a week later as instructed. When we got there, it seems they had discovered my son's IEP. (We had not hidden anything, we completed our application fully and honestly.) The woman who greeted us at the reception desk explained that my son could not go to that school after all. She said, "We are a small school, and we already have a lot of kids with autism."
• This next bullet point represents my husband morphing kind of like Bruce Banner into Lou Ferrigno on some level, and while he remained respectful at all times on the outside, he popped some serious muscles of indignation and outrage on the inside. Let's just say lawyers, civil rights experts, district officials, and experts in education immediately heard from my husband, all in his admirably polite but clear and definitive terms. Let's just say that my husband is a professional writer, and he used the tools of his trade to make his perspective absolutely clear. "This is not just the back of the bus," he explained, "this is being dragged from behind the bus, and it is NOT right, and it will not stand."
• So this weekend we got a call and an official email from the district saying that the principal has been instructed to enroll our son on August 25, and we should go to the school to meet with her again on that date.

My husband needed to fight this because he knew he could not let injustice score another point against a child, our child, and he feels deeply gratified that he prevailed. That does not mean, however, that we are at all certain we now want to send our boy to the school that does not want him, where we have clearly made some enemies. It's very complicated, of course... but we have a month to figure out what to do next.

Keep him at his old school, where parents have made us feel heartbroken, the kindergarten teacher probably deserved to be fired, and all three of the first grade teachers he had seemed good but only lasted a matter of months? But on the other hand, at his old school, he had some really good service providers, a wonderful IEP, and people who find him adorable. They have told us that we are wanted there, and that's not for nothing, though it is a school with lots of room for improvement, and possibly at risk.

Or move him to the new W school, where the principal has us flagged as troublemakers, we don't know anyone else, and the amazing special ed resource teacher everyone has gushed about for the last 4 years is leaving anyway? But it's a nicer campus with more stability and resources, and better programs.

I didn't even mention the wild card that our daughter, Peaches, is starting kindergarten in a charter school next year. That means a year from now, she should be able to pull in her brother, as a sibling, and we'll have to consider what THOSE changes might mean, besides even more transitions for a boy who doesn't navigate them with particular grace and agility.

So, if you have a positive, encouraging comment to leave, we welcome it. (Of course, trolls and critics need not apply; comments will be moderated thankyouverymuch.)

For now, we breathe a little easier, at least, knowing that we have a choice at all.

Facing Myself

I haven't posted regularly in what feels like forever, because I've been going back to school while working full time and raising two kids and helping my son navigate autism and finding a new job and ... well, acquiring significant material for this blog just by living my life. Now, I need to share. But I might ramble. And you might not want to follow, but I've got to get it all out, just for my own good. It might not seem like it, but I'm writing about autism, and the thread it stitches in indelible patterns throughout all the backdrops in my life.

So I'm in my first week at my new job, a chaotic event week at my new workplace that takes place once each year and coincided with my arrival, and so far I've attended a seminar about context in documentaries (there are inherent choices behind each cut, frame, shot, and edit), a live testimony from a survivor of the Rwandan genocide, and a presentation by an expert in the Holocaust. Now I am in line to get a plate of food, which I will eat during a working lunch on a topic I have not yet mastered. It would not surprise me if I looked a little pale, and if I had smudges under my eyes. The lady behind me said something like, "What moving, amazing... what stories... it's so hard, but so important..." She looked pale and had smudges too as we exchanged a few more convoluted thoughts, and I don't recall the transition, but I came around to full alertness when she said, "My friend told me after my family recently experienced our own tragedy that I was experiencing my own holocaust... You see, we lost my three and a half year old grandson..."

At some point she said she had no idea why she was sharing this with me, because it was not typical for her to do that, especially in a buffet line. At some point after that, she said, "He had autism. He wandered off... "

Every life is a story, every story is all about context. You cannot document a life without making choices of which context to include and which to leave out, because life is too big and messy and layered.

Our lives can seem so random, so disconnected, so different, but that's just costuming, just the cover art.

You see? I have not been writing much here at Rooster Calls, but I've been thinking about you, this, IT, quite a bit.

And now this is going to seem like a tangential explosion, but if you have come this far, hang on for a moment. I have not changed workplaces in 16 years, when I was a BABY, and I feel a little scared as I tackle my new responsibilities. My son got accepted into a new public school through a lottery system and we celebrated because it has such a good reputation for special education, and then that school said, "Oops, we missed the fact that he has autism, and we already have enough of 'those kids' so we are rescinding his acceptance" As my husband pursued legal recourse, I felt torn between wanting to fight and wanting to run from any school that wouldn't want my beautiful boy. Someone I love just had her heart badly broken. I turned 40 and worried about aging.

So all this to say I think it's a really good (scary, overwhelming) thing I made a career change that will help me remember things like CONTEXT, that will help me with the perspective I've been begging for on this blogging journey.

From my own bias as storyteller, through my own lens, via my own filters, this is what I heard this past week, in various experiences, and what I carry with me:
Life is hard. There is no justice. Life has no undo button. Memory is powerful. We live for our children - they are our hope. It does no good to compare suffering. Giving testimony can help a survivor go on. Some atrocities are very hard to fathom, and we must stand in the way of anything like it. Music can transport you. Our memories, stories, context change over time. Silence does not help. To choose not to choose is a choice. Choices have consequences. Never be a bystander. Time will pass. Hate hurts everyone. In the end, we have to live with ourselves alone. Stories teach. Writing matters. Live another day. Assume nothing. Show respect. I am a humanist.

I have no idea if I'm doing what I am supposed to be doing, and I mean that on global and granular levels, and I mean it about my career, my family, my blog, what I wore today. I do know I'm listening and learning, and my instincts tell me I am doing what I need to do. I don't claim to know if there is a reason that I met that grandmother in line for food, but I do believe that our stories mattered to one another, that we had something to offer one another. If you got to this point in this post, I hope that what I wrote today mattered somehow to you, had something to offer, something you can take away with you. My story is a patchwork, shot through with countless colors and threads, autism among them; just telling it helps me find the beauty in this messy life.

To Infinity and Beyond

Today a stranger heard me mention that I have two children and he asked their ages.

"My son is seven and my daughter is five," I said.

"Oh, so you are practically done with your son! My friends told me that once your kid turns seven, you have taught them all they need to know, and then rest is up to them. Take 'em to school and let them do their thing, but by seven they are ready for the world."

I doubt that works for anyone -- in fact I know it doesn't, because well into her eighties my grandma was still teaching and worrying about my mom -- but clearly my beautiful rooster needs more than being dropped off at school to be ready to tackle the world alone. I write largely about the good things lately, because my boy has a lot to celebrate, and because I am feeling stronger these days, but we have plenty of work cut out for us.

Among many other things, we still need to teach my seven-year-old boy to ride a bike, swim, add, and BE A FRIEND. He needs help with zippers, snaps, utensils, and IMPULSE CONTROL. He has yet to master board games, hopscotch, sports, or CROSSING THE STREET. My husband just remarked to me, "I still yearn for when I can have a conversation with our boy about a non-preferred topic. I know we will get there, but it's taking a lot longer than I had hoped..."

All this flashed in my head in the moment after this stranger told me I was "all done" parenting my oldest child. I thought about just letting it pass but you know I don't roll that way.

"My seven-year-old has autism," I said. "He is a great kid, I'm so proud of him, but I'm pretty sure we are not all done yet."

There are no right answers, but I liked the way this guy handled what could have been a real conversation stopper.

"So you'll give him all he needs to be the most that he can be," he said, not breaking eye contact, not reneging on his persistent smile.

I decided to match him smile for smile, and I said, "Really, that's the best we can hope for anyone."

"Yes," he said, "it certainly is."