Party Hat

Maybe Sophie Knows Best

posted Thursday November 12th, 2015


Today’s one of those days where I wouldn’t mind having a good cry.

Not a burst-int0-tears-at-the-drop-of-a-hat cry, but the kind you schedule, like Holly Hunter’s character in Broadcast News — where she sits on the bed in the hotel room, unplugs the phone, takes a deep breath and lets it rip.

It started this morning when I stumbled on the fact that not only do the gifted kids at Sophie’s school get to take drama, they also have a journalism elective.

I guess that makes sense, I chuckled to myself. Given the state of my chosen profession it will take only the best and brightest to get us out of this mess.

No journalism for Sophie, or the rest of what I call the “general population,” the kids who didn’t test into the gifted school-inside-a-school. All the kids on campus — gifted or not — can take choir, band, visual art, home economics, computers, Spanish and P.E. But other electives, like drama, sustainability and journalism, are “project based” and reserved for the gifted kids who passed a special test.

Sophie really wants to take drama. And, now that it’s come up, journalism.

“I’m going to talk to the [principal of the gifted school] about it again today,” she told me in the car this morning.

“Oh no, please don’t. You’ve already –” I began. Then I stopped. “You know what, Sophie?” I said. “Say whatever you want.”

Maybe Sophie knows best. I’m beyond knowing what to do. Last week, she made the junior varsity cheer squad. I found myself wondering whether she would have been chosen if there’d been a way to mask the fact that she had Down syndrome from the decision-makers — if her loud voice, memorized cheers, coordination, ballet-inspired grace, high kicks and ability to do the splits would have gotten her in. Her merits, with no qualifications. I’ll never know. The skids were greased. And not in a bad way, necessarily, certainly with the best intentions. But they were greased.

Now the question is, where else to get slick? And that is what has me wanting to cry, because I don’t know the answer. Am I pushing too hard, or not hard enough? What is Sophie capable of? What does she need? When do all the requests for equality get obnoxious? Where is the fucking instruction manual?

After weeks of pleasant conversations at the district level, I’ve made no progress beyond the promise that maybe someone will sponsor a drama club again this year for all the kids at Sophie’s school. It doesn’t appear that anyone’s willing to budge on the question of fairness — explaining why the gifted kids get more options than the non-gifted ones. If a gifted kid can take Home Ec, why can’t Sophie take Drama?

And so I’ll take it up the ladder, hoping the conversations will stay pleasant, but knowing that’s not likely if I have a hope of achieving anything. (And by achieving anything I’m not referring to just Sophie — this is unfair to the hundreds of typical kids who also attend that school and have limited options for electives.)

It doesn’t end there.

Sophie’s been asking for a while why other kids at her school are going on an out-of-town trip to tour colleges. I mentioned it to a couple of staff at the school, who decided Sophie should apply to the program, which is designed for college-bound kids. (Which is sort of depressing — why aren’t all, or at least most kids considered college-bound in middle school?) So now I have another form to fill out. I don’t mind the paperwork, but I’m worried about the implications.

Every week, it seems, a new college program for people with developmental disabilities pops up. So  yes, Sophie will be able to “attend college” in some form. But will it look anything like that out-of-town college tour? Hard to say. Am I just setting her up, showing her what will never be hers?

It reminds me of the conversation I had with her ballet teacher (who happens to be my mom) when I pressed on the issue of whether Sophie would ever be able to dance on pointe. My mom emailed back with a detailed explanation of the physical reasons it would be dangerous, and concluded, “Sure you could put her in a pointe shoe with lots of gel and stand her at the barre but it would be wrong in every way, especially that it would give Sophie hope that’s not realistic.”

For me, that ended the pointe shoe chapter decisively. I still look at pictures of friends’ daughters getting fitted for their pointe shoes with a little sadness, but both Sophie and I have moved on. (At least, she hasn’t mentioned it lately.)

But drama class, journalism class, the dream of attending an awesome college — those are not physical like pointe shoes, they are tougher pages. I’ll need Sophie’s help to turn them.

As I was sitting down to write, a friend posted this on Facebook:

“If disability awareness does not lead to inclusion and full integration and parity, then it is little more than tokenism.”

She’s right. Some days I think that if I see one more television news story about a young person with Down syndrome being elected homecoming king or queen, I’ll scream. I like the fact that people with Down syndrome are modeling, bring awareness and diversity to the runway, but I can’t help but think, “Really? That’s the best we can do?” And I’ll always be conflicted when it comes to cheerleading, no matter how much Sophie loves it.

But none of this is as simple as a status update. Putting Sophie on the cheer squad isn’t enough, I know that. So just what is enough? What does integration and full inclusion and parity look like? Where do we compromise and where do we refuse to stand down?

I don’t fucking know, and that’s the part that has me frustrated.

But I put on mascara this morning. So I’ll have to schedule that cry for another day.

Party Hat

Please Don’t Tell My Kid She Can Do Anything

posted Sunday October 4th, 2015


Sophie has been really into groceries lately.

Not eating them. Her four food groups are still rice, noodles, cheddar crackers and chocolate ice cream. I’m talking about groceries in the grocery store.

It began at Trader Joe’s about a year ago, when she developed an interest in scanning all the items in our cart. Not one to take no for an answer, Sophie didn’t even ask — just shoved the clerk aside and began pulling out wedges of cheese and baskets of strawberries, waving them over the censor and reaching for more while I did that Mom-Dance on the other side of the counter: “Is that okay? Are you sure it’s okay? Sophie, you better hurry, the line is getting longer. Let the nice man –”

Oh forget it. I began to seek out particularly cheerful-looking clerks and hoped for the best. Sophie walks out with a handful of stickers and a grin every time.

Last week she upped the ante at Safeway. We were grabbing a few items before a dinner party, so I hustled her through the store and past a million temptations (“Mechanical pencils, can I have those? And I really need a cute binder for choir. How about more cheddar bunnies? Can we go to Starbucks PLEASE?”) and into line, gratefully accepting her help when it came time to unload groceries onto the conveyor belt.

At 12, Sophie can still barely reach, but she was determined, stretching all the way over till it looked like she might actually flip herself into the cart if she wasn’t careful. But she’s always careful.

She couldn’t get around to the clerk’s side to scan items and her braces mean no chewing gum, so Sophie was clearly at a loss for a few moments for something to do or ask for, as she stood at the checkout counter. I was distracted, digging for my debit card, swiping, donating a dollar to the day’s charity because I’m that superstitious, when I noticed Sophie was no longer by my side.

I found her quickly. She’d moved to the end of the check out counter, and was quietly bagging our groceries.

I froze. “NO!” I wanted to yell. “DON’T DO THAT!”

From the beginning, when we first learned she had Down syndrome, I’ve been telling everyone who will listen how determined I am that Sophie never bag groceries.

It’s not that I have anything against grocery baggers. It’s honest work. And over the years, as I’ve discreetly (I hope) observed other people with intellectual disabilities bagging groceries, I’ve come to understand why it’s such a good job for so many. It’s done in a public place with constant supervision, bright lights, a lot of activity. The work is not easy and you’ve got to do it right or the eggs get broken, the bread gets smushed — so it’s valued, and that’s good. There’s conversation, music, community.

I still don’t want that to be Sophie’s only career option. I want her to do — well, anything she wants, right? Isn’t that every parent’s dream, what we whisper to perfect little babies as they sleep? “You can be anything you want to be!”

As far as I’m concerned, that’s a shitty thing to say to Sophie.

Lately I’ve heard a lot of talk about college programs designed for people with intellectual disabilities, and I think it’s awesome. I am confident that Sophie will be able to attend one, or do something else similar. It won’t be the same as what her sister Annabelle gets to do, there won’t be the same range of choices and brink-of-adulthood freedom — and Sophie will understand that.

And then what? What I don’t hear much is stories about people with intellectual disabilities having a lot of job choices once they do finish school. I’ve come to realize that it’s not so much that I don’t want her bagging groceries and more that I don’t want that be her only option.

But you know what else I don’t want? I don’t want anyone telling me that my kid can be whatever she wants. And I don’t want to tell her that, either. Because it’s a fucking lie.

I have a low threshold for inspirational sayings on a good day. On a bad one — keep me away from the Facebook Down syndrome groups and the memes in general. The other day someone posted an image of a cute, chubby boy with Down syndrome holding a sign saying, “I can do anything.”

Look, not to put too fine a point on it but I can’t do anything, either. Who can? I don’t see typical kids holding signs that say that because everyone knows it’s bullshit. About the only place it pops up for the rest of us is on the occasional fortune cookie. But for a little kid with Down syndrome it’s cute, because really, what sort of things will that kid want to do anyway? It’s safe, the kid doesn’t really get it, and the parents feel great. But really, what’s the point of the hyperbole? It might make you feel good as you scroll through your feed but in real life it’s just gonna kick you in the ass when you’re down.


I stood at the check out counter, debit card dangling from my fingers, staring at Sophie as she calmly bagged our paper napkins and instant pudding. How did she even know what to do? Is this, like, her birthright? Is it a genetic thing, that she’s drawn to this? I’ve never seen Annabelle do it. I know I never did.

I shook my head hard, grabbed my receipt, the bags and her hand, and headed out of the store.

Maybe Sophie will bag groceries for a living, I thought as we climbed into the car. Maybe that’s really what she’s suited for, what she’ll want. It’s so hard to know now. Or maybe she’s just a kind and helpful person — and a bit of a control freak.

Twelve is a hard age. Sophie is beginning to show physical signs of adulthood but she’s still such a little girl — twirling her hair, sucking her thumb, watching Peppa Pig. I’m pretty sure she was the only seventh grader who held her mom’s hand at “Take Our Parents to School” day at the junior high this week.

When I was searching for just the right junior high, a special ed teacher at a charter school who bragged that she had 20-plus years of experience with kids with special needs told me with great confidence that kids with Down syndrome stop progressing intellectually at 12. I looked it up and saw how controversial (and unproductive, not to mention hurtful) that comment was and soldiered on, ignoring it — for the most part. Sometimes it creeps back in, on a particularly bad day.

There are fewer and fewer bad days (knock wood) and Sophie keeps learning and growing. She is making friends (sort of), she is keeping up at school, her conversations are getting so mature and so (very slowly) are her television choices. She doesn’t always pitch a fit when I tell her to get in the shower or pick up her clothes (though she might be annoyed in an appropriate tween-y way) and the other day, when she overheard me telling a friend I needed to make a Power Point presentation for a conference I’m attending and admitting I’ve never made one, Sophie called from the backseat, “I’ll help you Mom. First thing you need to do is pick a background.”

So what background do I pick for Sophie? I guess it’s somewhere between “all cognitive growth stops at age 12″ and “you can be anything.” Finding that place is going to be a lot harder than building a Power Point presentation — even with Sophie’s help.



Party Hat

Conversations with Sophie

posted Monday August 31st, 2015


For as long as I can remember, Sophie has loved to talk on the phone. She can certainly hold down her end of a conversation, if she’s the topic. But lately I’ve noticed a sea change.

Sophie is engaging with the person on the other end of the conversation in ways I’ve never heard. For years I’ve hovered in the background and stage-whispered, “Ask, `how are YOU, Aunt Jenny?’” or “How was YOUR day, Papa?” and suddenly — it feels like overnight — she’s doing it herself.  She’s asking questions and she’s interested in the response.

She hasn’t mentioned it or acted like she’s noticed, but from my perspective it’s a new chapter for Sophie, an important sign of maturity. Apply it to text messaging, and — wow.

This weekend we drove to Flagstaff to spend the night at my parents’ house. I promised my mom we’d let her know when we arrived home safely, and crashed on the couch before remembering I hadn’t called — so I asked Sophie to do the honors.

This morning I picked up my phone and found the exchange posted above. She didn’t just tell my mom there was a dust storm, she engaged her, predicted her feelings, and wrote about it pretty darn eloquently.

I never thought a text message could elicit such pride.

Party Hat

Acting Up

posted Friday August 21st, 2015


In the end, I did not bring food to the first team meeting of the school year. Or a lawyer.

Instead, I brought Sophie.

It was not a tough meeting; I hadn’t expected it would be, or I likely would not have brought her. Sophie’s formal IEP meeting takes place each spring, and because so much can change in a few months, a long time ago I asked that the IEP require that a meeting be held within the first month of school. It’s been a really valuable tool.

We tweaked a few testing modifications and talked about lunch time procedures. Sophie interrupted several times, despite sharp (but, I hoped, kindly maternal) glances from me, and finally the speech pathologist jumped in and stage-whispered very loudly, “Do you want me to make this one of her goals?”

I nodded, my face hot. No one else in the room seemed bothered by Sophie’s excited questions and comments; I guess they are all used to it, used to her. Maybe more than used to her.

Mainstreaming a kid like Sophie is such a new thing at this school, a school that already has so many challenges, left with the kids who don’t qualify for the fancy gifted academy next door, whose parents haven’t sought out high-browed charter school options. This school, which is obviously starved for resources, with shabby edges and the challenges every public school faces today, has embraced my eager but challenging kid and given her the tools she needs to thrive.

Except for one.

Math, science, reading, social studies — Sophie’s getting it all, plus choir and visual art. It’s pretty amazing. But she’s made it clear that it’s not enough. She wants what other kids are getting. She wants drama class.

And so at the end of the meeting, I shifted awkwardly in my chair and made a little announcement. I know this has nothing to do with anyone at the school, I began, but I don’t want anyone to be blindsided, then explained that I’ll be approaching district administrators with my request to get Sophie (and any other kid from her school who wants to be) placed in a drama class at the gifted academy next door.

Some background:

When Sophie began middle school in sixth grade, she quickly realized that drama class was not among the elective options for students at her school. But it is for the kids at the gifted school. To complicate matters, the kids at the gifted school can take any elective offered at Sophie’s school; that is not reciprocal.

Sophie figured all this out before I did. She cornered the gifted school principal in the cafeteria at lunch and bugged him about this for months, to no avail. Ultimately I wrote a note to both principals and was told that no, this was not an option. You must qualify as gifted to take a class at the gifted school, even if it’s drama and not, say, pre-calculus. Sophie and I both tried to accept this, and took the options offered — including a not-great attempt at starting a drama club (which all but excluded Sophie) and the suggestion I sign her up for summer camp (that was a great week, but not enough).

I thought about it all summer, I told the team, and I have to say something. I haven’t done a formal analysis, but I’m willing to bet that the racial and economic breakdown at the gifted school looks a lot different from the racial and economic breakdown at Sophie’s school. Down syndrome aside, this is simply unfair. These gifted schools are segregating kids in dangerous ways that have flown under the radar — and someone needs to say something. Perhaps it’s easier for me, the parent of a kid whose entry into this school was never in question.

Plus, I don’t have a good explanation for Sophie as to why she can’t take drama. It doesn’t make sense to either of us.

And so, game on. Now the only thing to decide is what to bring along to that first meeting with the district administrators, assuming I get one. Food, the lawyer, Sophie? Maybe all three.

Party Hat


Sometimes you’re moving along through life, feeling like you have certain things down, know others to be true, and something happens that just completely rocks your world and makes you question everything you’ve done as a parent.

Or something like that.

A few days ago, a Facebook friend and fellow parent of a kid with Down syndrome posted an article about the relative merits of bringing food to IEP meetings. I stared at the computer, mouth literally hanging open.

Before I go any farther, let it be said that I am 100 percent in favor of gifts, including food, for everyone at my kids’ school from the crossing guard to the principal. Back to school gifts, teacher appreciation gifts, Christmas cookies, valentines — I’ve even been known to send round challahs during the Jewish holidays.  I like to connect on a personal level with the people who spend so much time and effort on my kid and ours is not a school where a lot of gift giving goes on, for whatever reason. As far as I’m concerned, teachers should be showered daily.

The gift giving argument is one for another day, though. I’m talking more specifically today about food at IEP meetings.

The IEP meeting is federally mandated and designed to create a document that gets a lot of scrutiny — a roadmap, in essence, for your kid with special needs. It’s arguably one of the most important sessions of the year. I’ve been through many, with a kid in seventh grade, and I can say that I’ve had my share of contentious IEP meetings, as well as uneventful and even a few downright pleasant sessions. But never with food.

To me, that’s like eating in church, one of the few times of the year when I have no appetite.

It never occurred to me — the one who made it my business to know the kindergarten teacher’s standing order at Starbucks, the principal’s dietary restrictions — to bring food to an IEP meeting.

Instead, when Sophie was in third grade, I started to bring a lawyer.

It would have been a lot cheaper to bring a bagel platter.

Do you bring food to IEP meetings? I’ve got one next week.

Party Hat

The Eyes Have It

posted Tuesday July 21st, 2015


I’m not sure when it happened — maybe it was always the case and no one noticed — but suddenly, Sophie’s eyes are two different colors. It’s subtle, but it’s there. One is greenish, the other blueish.

I pointed it out to her the other day, tried to get a closer look, and she pulled her head away, scowling. For a moment I wondered why, then I got it.

“You know, Sophie,” I said, “having two different colored eyes is not a Down syndrome thing. It’s a Sophie thing.”

Big grin.

To be honest, I’m not sure if it is a Down syndrome thing. But I’m not going to Google it. Not this time.

(Photo and makeup by Annabelle.)

Party Hat

Travels with Sophie

posted Thursday July 16th, 2015


Turns out, Sophie was born to travel.

She doesn’t get car sick, has no anxiety about flying, can sleep just about anywhere, and while she doesn’t pack light, her things are so small they never take up much space. She is pretty easy to feed as long as there’s bread, rice or some form of noodle on the menu; all she really wants is a to-go cup with a lid, preferably filled with cranberry juice but she’ll compromise.

And she loves hotels. Most of all, Sophie loves the front desk clerks at hotels. Maybe she’s got it in her blood (until recently, my family on my father’s side ran a hotel) or maybe it’s just because she is at her best with a captive audience.

She charmed so many staff members so quickly at the Ace Hotel in Portland a few weeks ago that by the time we checked into our room, there was a handwritten postcard and salt water taffy waiting for Sophie, wishing her a fun time. Later, a clerk overheard me admonishing Sophie for trying to score another free toothbrush and reached around me, silently handing her one. Without being asked, the bell boy produced a cardboard envelope to hold Sophie’s photo booth loot. It was out of control, in the best ways.

Then we got to San Francisco. Sitting in the lobby of the Hotel Triton, watching a young hotel employee teach Sophie to hula hoop, I started thinking about how we could make this a lifestyle. By the time that clerk had returned from the drug store with a coloring book and crayons for Sophie (no kidding and yes, I gave him a giant tip), I had an idea.

We should start a blog, call it Travels with Sophie, and make it all about her adventures — dancing in Jackson Square in New Orleans, walking Goofy down Main Street at Disneyland, doing the splits for President Obama in front of the White House. It would be great! Because Sophie is at her most awesome when she’s out in the world, soaking it up and letting it soak her up, too.

The next day we woke up and took a trolley to the Castro, wandered through the most incredible variety store (Cliff’s) I’ve ever seen, and stopped at a restaurant for lunch. Ray wasn’t with us in Portland, we’d joined up the day before in San Francisco, and he wasn’t as into Sophie’s super-friendly ways as I was.

Now I must pause to say that I totally get that. Sophie can overstay her welcome, and more important, there are some Stranger Danger and general etiquette lessons to be taught. So I don’t blame Ray for scolding Sophie gently after she’d asked the waitress what might have been her fiftieth question. And I didn’t think much of it as we all proceeded to finish our lunch.

A few minutes later, we’d paid the check and I took Sophie to the bathroom. I was still humming away, thinking about our future travels, high on vacation, when Sophie asked me, “Hey Mom, will I have Down syndrome my whole life?”

I felt my mood shrivel up and drift away, like a popped balloon.

“Yes, you will.”

“I don’t want to have Down syndrome.”

I didn’t know what to say, so I hugged her. It wasn’t the first time she’d told me she didn’t want to have DS, but it had been a while. Every day, it seems, I get more comfortable with the fact that she has it; not so for Sophie, apparently.

We walked out of the bathroom and Sophie picked up where she’d left off with the waitress, comparing notes on favorite TV shows, and we met up outside with Ray and Annabelle. The rest of the trip was filled with candy-making, browsing in Chinatown, walking (part of) the Golden Gate Bridge, then driving to LA, where Sophie charmed another set of clerks, securing free books from the hotel library and eliciting whispers of “Look at her! She’s so cute!”

And she was, strutting through the hotel lobby in one of her several wardrobe changes of the day, free from school dress codes, hard tests and unfriendly junior high peers. But not free from Down syndrome. That goes with her wherever Sophie goes.

Party Hat

The S Word

posted Thursday June 25th, 2015


I didn’t like the movie Inside Out, but not for the reason you’ve already guessed.

I will admit that I think about things too much — and also that I fell asleep during a critical time during the plot development of Pixar’s latest — but really, I thought the whole thing was a convoluted, over wrought mishmash of how to not try to explain emotions to your kid. Not in a meaningful way, at least.

In a word, I thought the movie was stupid. Which is kind of funny, since a lot of people have been criticizing it for belittling people who are not “intelligent” — a discussion that has now expanded to include other Pixar movies.

And, for me, life.

Because let’s face it, almost all of us (me included) use, see and hear the word stupid (and moron, idiot, dumb, the list goes on) all the time. It’s not just in Pixar movies. It’s everywhere.

The question: Is that okay? The answer: Please don’t make me decide.

At this point most of us can agree that the word retarded is not cool — not the way it’s come to be used, as a playground/Internet/water cooler slur. The rest of language gets a little fuzzy. Last night someone posted the above sentiment and I realized that this kind of thing is like pornography — you know it when you see it.

This one really cut me. “EXACTLY!” I practically yelled at the phone when I read the words, stark white on black, no cute old-fashioned lady illustration required to send it over the top. YES, I wanted to yell, I KNOW THAT WHEN SOMEONE ISN’T OF AVERAGE OR ABOVE AVERAGE INTELLIGENCE, THEY MIGHT NOT REALIZE IT. NO-FUCKING-DUH.

Here’s the thing. No one is going to “take back” the word retarded like queer, bitch and even nigger have been reclaimed, because there really isn’t the same kind of community around developmental disabilities. Not on a widespread basis, anyway.

By the very nature of the disability, a person with Down syndrome or another intellectual disability is bound to miss a slur, a slight, a nasty word. Like how dead people don’t know they are dead.

That is why parents like Jisun Lee take this kind of thing so seriously, and it’s probably why the word retard is the last big dig making the rounds in high schools and bars. This isn’t a community equipped to defend itself. Hence, what some consider an overreaction to the use of all related terminology.

I don’t like censorship. As a friend and I discussed the other day, I don’t want people to be afraid to talk around me, to cringe if they use the word dumb. I’m not sure I want to give it up, either. Words are powerful and we are their stewards and the best thing we can do is try to use them with care — acknowledging that in the heat of the moment, we all say things we later regret. As I like to say, it’s all a work in progress.

The best thing we can do is talk about it.

As usual, the person with the clearest vision on all of it is none other than Sophie.

Not long ago, she came home and reported to me that someone at school had used the S word.

“Oh dear,” I said. “That’s pretty strong.”

And then I had a feeling that Sophie wasn’t talking about the word shit.

“Can you say the word?” I asked.

“I can whisper it,” she said. “It’s a pretty bad one.”

I put my ear next to her mouth and she whispered.

“Stupid.” She looked a little ashamed, and shook her head like she couldn’t believe it.

Smart kid.


Party Hat


Summer birthdays suck.

Particularly in Phoenix, and Annabelle’s is smack in the middle of July — the worst time of the year to gather friends. So last week we grabbed her ballet classmates (the ones who hadn’t yet fled the heat) and gathered for a little swim party.

Sophie squirmed the entire time, eyeing the present table, firm in the belief that present opening should be the first activity at any birthday party worth its salt. But Annabelle took her pile home, and as we sat at the kitchen table late in the evening I was glad she was able to open them in the light. The gifts were sweet — a homemade tee shirt with her current favorite saying (“Absosnootly!”), a super soft blanket, a succulent, a plush “piece” of toast with a fuzzy pat of butter on it (yes, you read that right — and the oddest part is that “a stuffed grilled cheese sandwich” is actually on Annabelle’s birthday list).

But the best part was the cards.

I’m not talking Hallmark here. Nothing pre-fab. Almost to a person, each gift included a handwritten (both sides of the paper, in tiny words) letter to Annabelle — complete with drawings of “bun heads,” rainbow markered wording, one girl even made her a book – wishing her the happiest of birthdays, and sharing sentiments about friendship, dance, beauty and life. There were personal jokes, historical references (if you count starting ballet together at 3 “historical” — these kids do), true expressions of love — all the stuff you’d want in a real letter.

Annabelle read each one carefully, her eyes big, and at the end she announced quietly that she was going to save them forever.

Don’t get me wrong. These are girls who text and Instagram and Snapchat (whatever the hell that is). I sometimes catch them sitting together but apart, staring at their phones the way we all do these days. But at a time when we grown ups are lamenting the demise of the old fashioned, handwritten letter, these kids have embraced it and even taken it to a new level.

The next day, I dug up all the half written, yet-to-be-addressed notes abandoned on my desk, finished them and mailed them off. It was a nice reminder that some forms of communication can’t be bested by an app. And I know one thing Annabelle’s getting for her birthday next month: stationery.



Party Hat

butter charlene

I don’t know much, but I do know Phoenix. I’m a native (like, a real one — I was actually born here) and while I escaped for a few years, I’ve been back for more than 20. This city is a tough nut to crack, particularly in the summer. (Don’t worry, the forecast for next weekend is down to a balmy 109 degrees.) But in the last few years the city’s grown up a lot, and there’s more to do here than you might think. Better restaurants, too. Here are a few of our favorites.

(Be sure to call ahead for summer hours; you won’t likely need a reservation this time of year, but hours do change and sometimes folks close up for the summer. Another caveat: pretty much nothing on this list — and, in fact, nothing in general — is close to the convention site. Phoenix is a car town.)


The one-two punch of Chef Charleen Badman and front-man Pavle Milic is irresistible. This is hands-down my favorite restaurant in town — high-end cuisine in a lovely, low key setting. Pavle will kill me for saying this, but I’ll warn you to steer clear of the Arizona wines unless it’s Todd Bostock’s sparkling rose in a can or Milic’s own line of wines. The menu is veg friendly (and kid friendly, too, though not for chicken nuggets-only types) but if there’s lamb that day, GET IT. And don’t skip the butterscotch pudding for dessert. Or the negroni. Side note: Charleen and my Sophie are BFFs — more than one science fair project has gone down in the FnB kitchen. (See photo above. from the time Sophie and Charleen made butter.)

(Other wonderful Scottsdale restaurants for dinner and cocktails include PoshCitizen Public House, Virtu and AZ88, where Sophie’s favorite is the grilled cheese and my favorite is the espresso martini.)

Barrio Cafe

Sophie also has a love affair going with Silvana Salcido Esparza, the chef at Barrio Cafe (she has a couple locations at the airport and recently opened Barrio Urbana as well). My husband and I remember going to the original Barrio for our first real meal after Sophie’s first heart surgery 12 years ago — the restaurant is in Phoenix’s barrio, a few blocks from Phoenix Children’s Hospital. We don’t see much of Sophie when we eat at one of Silvana’s restaurants; the kid disappears into the kitchen with the chef!

Other options for Mexican food in metro Phoenix: the Sonoran Hot Dog is a must-try “dish” and you’ve got to get it off a cart. If you want your food super-hot, go to Los Dos Molinos (my favorite location is on South Central Avenue, in an old adobe). Los Olivos in Scottsdale is basic Sonoran Mexican food, kitschy and kid friendly.


Okay, I get that sushi in the desert sounds kind of sketchy. But Lori Hashimoto does it right. She will also accommodate “someone” (not Sophie!) with a fish phobia. (Thanks, Lori.) Seriously, every fish lover I know raves about this place. So if you need a sushi fix while you’re here, this is the place. Lori’s another local chef on Sophie’s list of favorite people.

Welcome Chicken and Donuts

No, that is not a typo. I did not mean to write chicken and waffles. The folks behind the amazing Welcome Diner (come back during a cool-weather visit, the seating’s mainly outdoors) recently opened a place that pretty much only sells fried chicken and donuts in flavors like Key Lime Pie. And cold brew coffee, they serve that too. It’s pretty much perfect. And right near the airport. You’re welcome.

Crepe Bar

What Jeff Kraus does with a crepe should be a crime. This place is casual with counter-service and the line can be long but it’s worth it — and you’ll probably get a sample of the best granola you’ve ever tasted.

Pizzeria Bianco

It’s probably the city’s most famous restaurant, and it’s worth going! But go to the Town and Country (20th Street and Camelback) location. It’s closer to the hotel, and I can almost guarantee there won’t be the infamous wait. Make sure you ask for the chef’s mom’s desserts.

Super Chunk

Country and Sergio Velador are the Wonkas of Phoenix. You have to see it to believe it. Their little candy shop features only handmade items, from sweet and savory popcorns to brittles, hand-pulled taffy and gorgeous cakes. Sophie never makes it out of there without a small tub of chocolate chips.

Sweet Republic

This ice cream shop (with locations in Scottsdale, Phoenix and the airport — you can also find it at Whole Foods) is exactly what you’re going to need in Phoenix in June. Helen Yung is one of the most creative chefs I’ve encountered — she often mixes it with mash-ups with local restaurants and even a local beer, recently. And you should watch her order dim sum. Both my girls are in total awe of Helen.


Frances, MADE and Bunky Boutique, all in Central Phoenix, are amazing little indie shops. Our beloved bookstore, Changing Hands in Tempe, recently opened a second location in Phoenix — with a coffee/wine/beer bar. Sophie pretty much runs the joint (the book part, anyway) when we visit. She wishes there was a children’s drama section but otherwise it’s pretty much her favorite place in town.

Desert Ridge is the closest mall to the convention site — it’s okay but typical and big box-y and chain-y, and, be warned, outdoors. Even in the hottest months, they tend to keep large fires roaring outside; it’s a little disturbing. Kierland Commons is a better bet, though a little snooty and still outdoors. Scottsdale Fashion Square is giant and INDOORS. Score. (In Phoenix in the summer, one must learn to embrace the mall.)

Stuff to Do

There’s a children’s museum in downtown Phoenix, as well as the Arizona Science Center, Phoenix Art Museum (sorry, you just missed the Warhol show) and the Heard Museum (largest Native American art collection in the world). If I was going to choose one museum to go to, it would be the Musical Instrument Museum, which (bonus!) is actually close to the convention site.  We took Sophie several year ago and she loved it.

You’ll have a giant pool at the Marriott, so I won’t give you specifics about other pools in the area — but there are several, including water parks like the old school Big Surf in Scottsdale.

If you’re into Paolo Soleri, go to the late architect’s bell factory, Cosanti, in Paradise Valley. And of course there’s Taliesin West, Frank Lloyd Wright’s winter HQ. Or go hang out at the Arizona Biltmore hotel, built by Wright disciples. (And there’s a nice bar in the lobby!)

If you get desperate, you can always Google “ice skating” and “Phoenix.”

You also might want to get out of the heat entirely. The beach is six hours, so Flagstaff’s the best bet for that (two hours north on I-17) and when you’re there, be sure to go to Macy’s for coffee. Black Bart’s is super kitschy and silly, with waiters singing show tunes. Awesome. The Monte Vista is a cute, vintage hotel in the heart of downtown Flagstaff.

Hope that helps! Don’t forget sunscreen! 




Amy Silverman
Amy Silverman has two beautiful daughters, Annabelle and Sophie. Sophie has Down syndrome. These days, Amy divides the world into two groups: the people who adore Sophie, and those who don’t look twice. Amy has to remind herself that once upon a time -- when it came to people who are "different" -- she fell in the latter category. And therein lies the blog... Read more


All content ©Amy Silverman | Site design & integration by New Amsterdam Consulting