The boy with no words speaks to us all

Avonte1This morning on the A train, I found myself looking at a young teenage boy with Nike sneakers and sweet eyes. Old habits die hard: I am still looking for Avonte.

On October 4, the non-verbal 14 year old with autism walked out of his special education school unsupervised. We all searched for him: far and wide and then farther and wider. We tweeted and shared and emailed and blogged, and when that wasn’t enough, we tweeted and shared and emailed and blogged all over again. We worked with police search parties and we organized community search parties. For weeks and weeks and months and months and however long it would take. And we hoped.

But hope abandoned us all. There is no shade of black dark enough to characterize how this story ended: decomposed, partially-clothed body parts at a river’s edge. No mother’s scream that is primal enough; no garbage that is rancid enough.

Things need to change. Special education schools need to properly supervise students with a history of running off. Parents of school children that go missing need to be notified right away and not 45 minutes later. New York City missing child email alerts need to be sent out immediately and not 72 hours later.

We are devastated. But we are also human and hope is resilient. We have to believe the day will come when things do change: when we take good care of our most vulnerable citizens; when we understand that different isn’t less-than; when we truly value diversity.

Nothing can return Avonte to his family, but I will think of him and picture his smile every time I advocate for Brooks. And I hope that brings his mother some small measure of comfort.

 

 

 

 

Last Days

ImageBrooks had his last day of school on Friday, and today is our last Orange Demons little league game (Brooks is the one in the foreground cheering on his teammates).

Although my son frequently reminds us that the Demons are 1 and 5 this season, my husband and I are grateful that no one else in this Hudson Cliffs organization seems to be paying much attention to the stats. Brooks is picking up baseball skills in a supportive environment where winning is nice, but only gets ranked third in team goals and priorities (perfectly summed up this way by one of our volunteer parent coaches):

  1. Developing sportsmanship (fair play, support of teammates, collegiality in the face of competition)
  2. Developing players’ baseball skills
  3. Trying to win games

Because these last days seem to come at my husband and me faster than we can process them, we will try our best to slow down and really acknowledge this one.

This afternoon, whether the Demons win or lose , I will take this one last opportunity to enjoy the company of the other Demon parents on the bench where, together as a community, we will shout encouraging messages to our boys and girls. When Brooks plays well, I will make sure to bottle that proud smile of his that won’t quit and save it for the off-season. And if he drops a pop fly, I’ll go with: “Good try–you’ll get it next time!”

What I am most grateful about in this league is that Brooks gets recognized and appreciated beyond being the kid on the team with autism. He’s Brooks. Like Ben, Calum, Gabo, Javier, Michael, Noella, Owen, Sam, Stephen, Sundar, Theo and Will–all individually spectacular Demons.

 

 

 

How do you get to Carnegie Hall?

The traditional punch line is “Practice,” but in our family, it’s “Cousin Susan.”

Outraged that her children’s school in California had no orchestra program when she moved west twelve years ago, Susan founded the South Pasadena Strings Program, an award-winning, nationally-acclaimed music program for 5 – 12 year-olds. The youngest orchestra ever  to perform at Carnegie Hall in May of 2009, Susan invited us to a recent return engagement.

Although we don’t see my husband’s first cousin very often, we’ve always had a special connection to her and her family. When we do sneak in mini-reunions over lunches that are over too soon, Brooks is often unavailable which is a shame because he would love hearing her reminisce with my husband about the songs they wrote together when they were seven (of course, they actually sing them right there in the restaurant!).

So we ignored the fact that this performance was on a school night and seized the opportunity to introduce Brooks to this legendary concert hall, and more importantly, to reintroduce him to the cousins and aunts who knew him only as a toddler.

I don’t know that I could choose a favorite moment about that night: seeing Brooks as enchanted with classical music as with Jay-Z or Taylor Swift; seeing Susan up there on the conductor’s podium completely in her element creating music with her accomplished students; watching 10-year-old Jenna (Susan’s daughter and principal cellist) coming over afterwards to give Brooks a big hug, not having seen him since they played together once lifetimes ago; reconnecting with Susan’s older daughter, Ariana, a freshman Julliard student who we intend to see perform very soon; seeing Aunt Lee’s face light up when she laid eyes on the boy she never fails to send a birthday card.

Given that we are geographically challenged with regards to extended family, we are so grateful for special occasions like these so that Brooks gets the chance to connect the dots. Especially since I can so distinctly recall a time shortly after he was diagnosed when relationships like these were fraught with uncertainty.

Cousins then…

photo (28)

and cousins now:photo (27)

And let me take one last opportunity to brag about my extraordinary “cuz:”

 

 

 

 

The sweet sound of “goal accomplished”

Our roller coaster ride of autism parenting has brought us plenty of ups and downs but the latest round of school progress reports has brought us to a new high.

Brooks is finally becoming more comfortable at school: talking to his peers and actually forging friendships with them, something we’ve been working on since pre-K. We understand exactly what this transformation can be attributed to: a gifted team of teachers and therapists who take the time to carefully develop his personalized goals (most recently: “I will talk to my friends at appropriate times”), his work with our longtime weekly psychologist outside of school who always listens and helps beyond reasonable expectations (and who has reported how incredibly happy Brooks has been during their past few sessions), and the ingredient each one of us brings in heaping amounts, without which there can be no forward movement: patience.

We are a long way from unbelting our seats—sharp turns and loop-de-loops may certainly be part of our future—but for this moment, the air is clear and the view is spectacular.

Even more so when Brooks came home from school recently with this self-portrait.
self-portrait

 

 

 

Raising a musical theatre geek

rocky-scoreBrooks loves musical theatre.

Did we encourage it? Sure. From populating his lullaby mixed tape with show tunes to religiously attending Merkin Hall’s Broadway Playhouse Series to teaching him about how musicals start out as readings.

But if you’ll excuse the mixed metaphor: you can lead a horse to the stage door, but you can’t make him sing.

So my husband and I continue to be grateful that Brooks shares our passion for this art form. And we found it especially sweet when we recently passed a marquee for Cinderella and Brooks cried out with the same enthusiasm he reserves for Lady Gaga or Adele: “Look, Rodgers and Hammerstein!”

 

 

 

How wrong is it to do your child’s homework?

Somewhere between my son’s annual science fair last year and his most recent monthly book report, I have turned into that kind of parent. You know, the kind who becomes so attached to designing and building the paper-mâché volcano that their child’s involvement becomes quite beside the point?

rocky-score

It started out innocently enough: my idea was for Brooks to write a song about “Scaredy-Cat Catcher,” a chapter book we had been reading together. Yes, it was my idea, but in my defense, I only presented it because my son’s idea was to repeat a project we had done the last time (which had been my husband’s idea).

On the plus side, Brooks was very involved with many aspects of this perhaps overly-ambitious project. We read the book together twice over a period of a few weeks and outlined the basic storyline. And then Brooks came up with the chorus on his own: he simply started to improvise and I picked out one of his catchier melodic phrases that rhymed.

It was when we got into writing the lyrics that I thought I might be losing him: the first clue was when he asked me if he could be excused “to go do something fun.” He was pretty surprised to hear that we already were having fun. I managed to keep him engaged a little longer choosing rhymes, but I knew time was not on my side.

Although I didn’t even try to get Brooks to participate in writing the piano score or notating the music into an iPad app so we could print it (Notion), he did follow an aggressive practice schedule for singing and playing the song so that we could make the video.

Here’s what I loved about this project: it paired my son’s reading comprehension challenges with his love of music, a refreshingly non-verbal pursuit that is one of his true strengths (sadly, to all children’s detriment, the DOE continues to skimp on arts programs).

Did I get too involved in this project? I didn’t think so, until the day after Brooks presented it when I found myself brooding that Mr. Neil didn’t email to congratulate me on a job well done. Perhaps that’s the red flag?

 

 

 

The bus strike is over

bus-strikeAt 7:10 am tomorrow morning, we will be happily reunited with my son’s bus driver and matron. I know it will be exactly at 7:10 because they are never late.

Sadly, Mayor Bloomberg has made certain that our reunion will not last long—in June, he will bring in a lower-cost workforce that will be more transient, less punctual, and most importantly, will have no experience with special education children.

The Mayor has claimed all through the strike that the bus drivers’ union request for job protection was illegal. Ironically, when it was illegal for Bloomberg to run for a third term in 2008, he managed to find a loophole. Given that he couldn’t manage to bring himself to a single strike negotiation meeting and given his poor legal record when it comes to educating my son and his peers, perhaps it’s time to conclude that he doesn’t really have anyone’s best interest at heart except his own.

Thankfully, advocate groups like The Arise Coalition, Advocates for Children, and Parents to Improve School Transportation (PIST) continue to work tirelessly, understanding that the strike didn’t solve anything. There will be a public speak out this Thursday night at 6pm—please attend if you can.

 

 

 

Challenging day trips

One of my favorite dinnertime traditions in our house is when we share our daily highs and lows. Brooks picked it up from his school (LearningSpring), and my husband and I are grateful for this simple but powerful construct that provides our son with a convenient shortcut that focuses him and cuts out the perseverative white noise. And it works nicely for my husband and me too!

aquatics_DSC_3148But last month brought my least favorite incarnation of this tradition when Brooks came home from a Y day trip to an indoor water park: “My low today was when I drowned-ed.”

To my credit, I did not choke on my dinner. I have always been deeply afraid of my son’s swimming challenges, especially when paired with his challenges communicating that he can’t swim. But the staff at the Y knows all this, and we consistently provide them with extra reminders at all morning drop-offs that involve bathing suits, as my husband had that very morning.

Having pretty much lost my appetite, even for a family favorite like cheesy pasta, I calmly moved on to some follow-up questions; but it only got worse.

Here’s how he presented it: he had gone down a big slide, and even though a counselor had promised him she would catch him at the bottom, she didn’t. Yes, the water was deep. He went under and then came back up again, and then he went under again, except this time, he didn’t come back up. And that was when the lifeguard saved him.

Now the smell of the broccoli was making me nauseated. Somehow I withheld blurting out the questions that multiplied exponentially in my head and instead slowly continued my careful line of pointed questioning: “Where was the lifeguard? Was she sitting on one of those tall chairs high above the pool and she had to come down to save you?”

“No, Mom—she was right there!” Brooks answered immediately. “Two miles away.”

I didn’t sleep that night. Even though I knew the Y staff would have called me if something significant had happened, every time I closed my eyes I saw Brooks drowning with no one to help him because of some innocent misunderstanding; because a counselor didn’t realize that Brooks can describe something right beside him as two miles away.

First thing the next morning, we met with the program director and got the facts: The deepest section of the pool only three and a half feet, and there was a lifeguard positioned at the bottom of the slide to help all the kids up. From their perspective, Brooks was afraid of the slide at first but then worked up the courage to try it and everyone was proud of how brave he was. Whether or not it was necessary at that point, I felt the need to reiterate my “we need the staff to be vigilant” speech: Brooks cannot swim;  he can easily get separated from his partner; he can easily be unaware that he’s even been assigned a partner. Even though they know him well and they are familiar with his challenges (some of his counselors over the years have even become trusted babysitters!), there is no denying that what they offer is a mainstream program with some special education support on the side. Most of the time, this is the ideal program for my son.

There is an inherent risk in exposing Brooks to the wider world of kids and adults who are not necessarily versed in autism, but my husband and I both believe it’s worth taking. Even though it continues to keep us up at night.

 

 

 

We’re paying school bus drivers too much? Really?!

SchoolBus_EnglishSince pre-K, my son’s New York City school bus drivers and matrons have always been professional, punctual, and polite. This year, every morning as Brooks boards his yellow minibus, I watch the matron help him with his seat belt, and I know that she and the driver will look out for him because they understand that he can’t always speak up for himself. They both have years of experience with special needs busing, and because of that, my husband and I can wave goodbye to Brooks comforted by the fact that he feels safe and is in good hands.

I could go on indefinitely about the mind-numbing bureaucracy of the Office of Pupil Transportation when it comes to setting up routes and travel times, but our experience of the drivers and matrons in the field has always been positive.

But this week, thanks to Mayor Bloomberg and Chancellor Walcott, our dependable allies will likely have no option but to strike.

Chancellor Walcott claims: “Though the City cannot legally do what the bus drivers’ union wants, they are threatening a strike that would impact our students and families.”. Of course, that is hardly the full story: according to PIST (Parents to Improve School Transportation): The City is hiding behind an unrelated Court of Appeals decision that does not apply to special education children.

Does it make any sense to cut our school bus driver salaries below the current annual $36,000 average? Given that we pay our sanitation workers  an average salary of $49,600, the truth is that we spend more money transporting our garbage than our school children. If you’re as appalled by this statistic as I am, please take a moment to sign this petition.

Since the DOE’s pattern of doling out indignities to special education families is not changing anytime soon, chances are that my husband and I, along with 52,000 other special needs parents, will be turning our lives upside down this week figuring out how to get our kids to and from school.

 

 

 

The zen of jigsaw puzzles

puzzleBefore our eagerly anticipated New Year’s 4-day weekend began, I went out and bought myself a 500-piece jigsaw puzzle.

I am not fooling myself that there is any high art in this–putting these puzzle pieces together–but that was part of my plan: I didn’t want to create something new. I wanted the comfort of knowing the picture was already there waiting for me, full of whimsical colors and shapes; I just needed to negotiate how it all fit together.

And I could do that while sipping a cup of coffee–or a glass of wine–for as many uninterrupted hours as I liked. And long after it got dark and the boy and the dad were happily fast asleep, I took Pandora up on its offer to play me all my favorite late-night holiday songs.

That’s how I spent Saturday night, and by 3am I was holding the final piece. Once it was placed, and I had had my fill smoothing out the puzzle grooves with the tips of my fingers so that I could properly admire Picasso’s unique composition, I removed a single piece.

As per my deal with my husband, he would be the one to put in the final piece the next morning. That way, we could tell our friends that I started the puzzle but he finished it.

Perhaps it’s no coincidence that a puzzle piece has become the autism icon. It’s one of my New Year’s resolutions to evoke Saturday night’s approach when it comes to understanding Brooks: slow down, take one piece at a time, and most importantly, never lose sight of how beautiful he is.

 

 

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