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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.

 

 

 

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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.

 

 

Before and after

Brooks came to a comforting realization a few weeks ago when what started out as another night of routine dinner conversation became a philosophical discussion about birth and death: “I’m not going to die for the rest of my life.”

This was before Newtown, when this blog post might have been about how much I love watching him get a foothold on these worldly concepts that he’s just now beginning to grasp, and how that refreshingly makes me reassess my own grasp on all of it.

But now, after Newtown, that approach has lost its appeal. No one, myself included, can stomach the part where I tell him he won’t die until he’s very old, even though it is as statistically true as ever.

Because there is a hard, cold reality that cannot be wished away for the families of those 20 first-graders who tragically bucked those statistics and their 6 heroic protectors, not even in this holiday season of miracles.

Now that we know at least one of the victims had autism, I hope it is less important whether the killer did. I hope that what becomes most important is fighting for gun control laws and improving mental health care services.

I am a firm believer in tributes: whether it’s in the form of Ann Curry’s 26 Acts of Kindness or a retweet of my former colleague’s simple yet elegant 140 characters:

 

Mercifully, the promise of a brand new year is just around the corner.

 

 

 

Making peace with autism stims

My husband and I were introduced to stims long before we knew what they were. Turns out that Brooks had not, in fact, been teething for the first few years of his life, but rather eating his hands (or anything else he could get into his mouth and chew on) in order to calm and regulate himself, the same way you or I might tap a pencil or bite our nails. Except that Brooks went at it like he was on speed.

Back in those early days, we committed ourselves whole-heartedly to gently redirecting his stims—this particular oral one and the many others—into more socially acceptable behaviors. So when he got excited and flapped his arms, we encouraged him to clap his hands instead. Of course, first we had to teach him how to clap his hands. But as anyone with an autistic toddler knows, progress doesn’t come without Herculean amounts of time, effort, and patience.

to_stim_or_not_to_stim_ipad_caseAlthough I have the capacity to be very patient, as a rule, I become much less so after 6pm. I remember one evening when we were visiting friends that I told Brooks “No hands in your mouth” and I physically pulled his hand down. I fully understood that this did not meet the criteria for gentle redirection, but like I said: it was late in the day. My friend, Sue, who is one of the finest parents I know, asked me why I stopped him—what was so bad about him putting his fingers in his mouth? I was honest: nothing. Except that when he does it, all I can see is him, as a grown man, institutionalized because he gnaws on his hands.

As the therapists promised, many of his stims have improved over the years. To be clear, they haven’t disappeared—they tend to hibernate for a while and then reappear, sometimes morphing into new forms. These days, Brooks still puts his hands in his mouth and chews on the neck of his shirt more often than we wish; he runs back and forth (and back and forth and back and forth) when he’s watching a football game or anything else on TV; and although he doesn’t flap his hands exactly, he does this “body shake” when he gets excited that is socially awkward.

I like to think that, over the years, my husband and I have improved our responses to his stims: that our son’s self-esteem can survive our gentle reminders (although, honestly: I’m not sure how happy I would be with someone correcting me all the time, no matter how gentle). We’re certainly more laid-back about it, but no less committed to giving him every possible social advantage without unduly torturing him—we toe the line as best we can.

But I can’t help wondering if we’re getting it all wrong. Last week, the three of us were playing cards and Brooks made an excellent strategy move which, of course, got him up from the table running back and forth (and back and forth and back and forth).

So I playfully said: “Hey, can you please stop galloping around like a horse and play the next hand?” Brooks started laughing hysterically and so did we. Maybe we take a “social advantages, shmocial advantges” approach: this is how he experiences excitement, and as my friend Sue once wisely told me, there’s nothing really wrong with it.

 

 

 

Learning to score touchdowns

Last Thursday, we started a new family tradition: our first annual Thanksgiving football game. We’re big fans of ”if at first you don’t succeed; try, try again,” and here it is in perfect form:

 

Wishing you many touchdowns this holiday season.

 

 

 

To my son’s future significant other

If you’re reading this, I am so very pleased to meet you: it means that the future has been kind enough to let you and my son find each other.

I don’t know if you’re a man or a woman, or if you have autism or not; nor do I care. I do know that you’re gentle and caring and compassionate because that is what Brooks responds to. It’s what he’s always responded to since he was a baby, and my husband and I hope he never outgrows it.

But there are other characteristics that we are eager for him to outgrow, and you should know that regardless of how successful we are in our endeavors, we have been diligently working on them.

I thought of you the other night when we were having dinner and Brooks started eating rice with his hands. We can’t ignore that these kinds of habits will only magnify the disadvantages he’ll face in the social quagmire of high school, and even once he somehow makes it through all that, how will anyone–especially someone as nice as you–ever sit down to a meal with him? It’s not like we’ve never taught him that he can’t use his hands to eat rice, but it’s complicated for him: he wants to use his hands because of his fine motor challenges and he has trouble remembering the rules: he can use his hands to eat fried chicken–why not rice? So now he has to remember the inconsistent rules and manipulate the fork (plus he happens to have the appetite of a Sumo wrestler).

I wish I could promise you that his improvements over the years will be significant, but the reality is that they may be slight. I’m guessing you already know that he cannot be asked to make a bed unless you want it to look like a Salvador Dali painting; that he simply doesn’t process where the blanket ends and the pillow begins. And that his other home care skills like laundry and cooking and cleaning will never be second nature for him. Although he’ll continue to master certain aspects, I’m afraid that others may remain beyond his capabilities.

And that’s not the half of it. I wish I could sugar-coat his intellectual delays, but I have to be honest with you: his brain works differently. It is not defective, as some misguided parties claim, but rather unique in its processes. He experiences the world differently and he can’t easily learn what we deem valuable–only what he does: like memorizing the roster of almost every team in the NBA. And the NFL. And the MLB. At nine years old.

I’m guessing that you know all this, and that you don’t care; that you understand what really matters whether he’s nine or twenty-nine is that he’s doing the best he can, and no matter how much we want him to spare him the pain of feeling different, there comes a point where we need to graciously accept his limitations.

And the surprising truth about those limitations is that when you spend time with him, they fade away into the background. No one knows this better than you and I. He takes our breath away: his magnetic good looks, easy smile, and winning charm; the kind and gentle way he asks how our day went; his quirky sense of humor and infectious laugh; his moves on the dance floor; and finally, his unparalleled enthusiasm that hovers somewhere between driving us crazy and making us insanely happy.

Brooks is supposed to find someone to share his life with, but he was also supposed to thrive in an integrated school environment, and he was also supposed to lose his diagnosis. In the shadow of these unrealized optimistic expectations and in the interest of keeping a firm grasp on reality, I am forced to wonder whether you exist.

But then I look at Brooks–how absolutely perfect he is exactly as he is–and I realize how unfair it would be for me to play it safe and saddle him with low expectations. And when he looks back at me–in those purest of moments–my fears wash away and all I can see is the magic of his future. And your part in it.

It is my fiercest hope that someday I get to welcome you to the family.
 
 
 

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