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Party Hat

That Phenomenal Moment

posted Wednesday May 30th, 2018

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The dust is settling around Sophie’s freshman year of high school. It was one of the messiest yet. And also pretty awesome. Sometimes in life, all it takes is one phenomenal moment to make you feel like you’re doing the right thing.

I spent much of this last year looking for that phenomenal moment, the sign that Sophie was in the right place, at the right school, on the right track. There is no obvious path, not for Sophie. Even in Arizona, where state leaders brag there are more school choice options than anywhere else, there is no school designed for her, few that welcome a kid like her. So we are figuring it out as we go along. When you’re blazing your own trail, it’s easy to get lost. I don’t mind wandering a bit, even stumbling, as long as it’s my knees that are getting skinned.

But Sophie’s got enough challenges, navigating the world through the lens of Down syndrome.

I was reminded during Sophie’s freshman year that public school in this country for a kid with significant learning issues is death by a thousand paper cuts — a tangle of bureaucratic forms, lists and goals designed to ensure safety and success that too often results in distraction, confusion and excuse making.

The truth is that any meaningful education, anywhere, is about the people, not the paperwork. That’s what I’ve learned, anyway.

The pre-school teacher who still keeps in touch, more than a dozen years later. The school bus driver who showed up on our doorstep with a get well gift (a stuffed Winnie the Pooh — I’ll never forget that) when Sophie had open heart surgery. The seventh grade English teacher who made it her mission to fully include my kid in class and see her succeed, right down to her “Are You There God It’s Me Margaret” multi media book report. The drama teacher who treated Sophie like every other kid in that general ed class — and made sure the students did, too. The aide who made mainstreaming — and meaningful learning — possible for Sophie.

Those experiences — and those people — were hard won, all in the rear view mirror that first day of high school as I dropped her off, Taylor Swift (Sophie’s pick) blaring on the car stereo.

You take a deep breath
And you walk through the doors
It’s the morning of your very first day
You say hi to your friends you ain’t seen in awhile
Try and stay out of everybody’s way

I spent a lot of time worrying this year that the opposite was happening — that Sophie was in everyone’s way. I braced for every phone call, email, meeting, cringing and lecturing myself that this kid deserves a fair shake, a chance to learn, socialize, perform, grow up.

As we rounded the bend from the first semester of freshman year to the second, I was increasingly disheartened. I had not found our people, not really. Sophie’s English teacher made it clear she didn’t want her in class. I fought with her case manager over unanswered emails. Sophie hadn’t made the cheer line or the school musical, and although she was the shortest kid in her choir class, somehow she kept getting placed in the second or third row, completely out of sight during performances. She hadn’t made any real friends, but instead was obsessed with a senior boy who eventually (and understandably) blocked her texts and calls. A girl promised to take her to a dance, but backed out at the last minute.

We switched English teachers and case managers and I tried to keep the rest in perspective. Not everyone makes the cheer line. Not everyone can sing. Sophie seemed relatively happy with her largely imaginary friends.

Anyhow, everyone’s miserable in high school, right? I don’t love that storyline, particularly not for Sophie. Life is too short, especially when early onset Alzheimer’s is practically a given and life expectancy is better than it was but still not as good as it is for your peers.

Fuck that. I needed my sign, a sign that high school was going to at least be okay for Sophie.

I got it. Toward the end of the second semester, Sophie’s dance class participated in a school-wide show. It was intense — several nights of three-hour rehearsals, baskets (literally) of costumes, cues and moves learned over the course of the entire year.

I snuck into the auditorium during a dress rehearsal, prepared to not see Sophie at all, figuring that as with choir, she would be pushed to the back of a giant group, hidden. Turns out, she was anything but. The very last number in the very long show featured the beginning dance class, a large group performing to Sinatra’s “Luck Be a Lady.”

There was Sophie, quite literally front and center. She was a half beat behind everyone else, like she always is, but what she lacked in precision she made up with flair honed during a decade of dance classes. She was part of the pack, and totally visible in it; she was performing to the best of her abilities, and very much holding her own.

In that dance, I saw everything Sophie has worked for all these years, everything I’ve hoped for since her first day of pre-school.

It was magic.

And, of course, it was anything but. As always, it was about a person, a dance teacher who nurtured and celebrated my kid all year, who quietly made modifications when Sophie needed them, and who let her shine on stage without making a big deal out of it.

In the end, Sophie barely passed math, aced history, and did okay in English. She looked forward to school every single day, even though halfway through the year she told me she doesn’t want to go to college anymore; too much homework. There’s time to change her mind, and so much for her to learn and do over the next three (maybe more) years.

It won’t be easy. But she’s signed up for dance.


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Party Hat

Birthday Girls

posted Monday May 21st, 2018

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“HEY ARE YOU ALMOST DRESSED?” I yelled out from the bathroom one morning last week.

Sophie appeared in the doorway, wearing a tee shirt that said Hopeless Dreamer on the pocket, chewing hard on her well-worn thumb, almost twice the size of a normal thumb from years of sucking. Fifteen years.

“This is what 15 looks like,” I thought, gazing at her for a moment before breaking the reverie for the mad dash out the door to school.

It looks pretty good.

This morning Sophie was up early, at 5:30, ready for presents on her actual birthday. She burst into the kitchen and requested a cup of coffee.

“Now that I’m 15 I will drink coffee,” she said.

I put a lot of milk and sugar in it.

“It’s so weird that I’m 15,” she kept saying, almost to herself.

I get it. It’s weird to me, too. Sophie is caught in that space between child and adult, and I wonder all the time when and if that will end.

Yesterday at the spring ballet recital her moves were (almost) perfectly matched with her classmates, and from far away the biggest giveaway that Sophie is different was her boobs — the rest of the class, a couple years younger, was flat chested. She didn’t seem to notice or care, too focused on remembering the steps.

Sophie’s soundtrack these days is the Avett Brothers, Taylor Swift — and the “Wow Wow Wubbzy” theme song. She got almost every question right on her world history final this morning, I hear, but blew the math. She loves YouTube videos about how to put on makeup and organize your room. She is boy crazy. She has mixed feelings about her bangs. Last week, her dad noted, she used the word “viable” in conversation. Correctly. Last month she wanted to be a choreographer and photographer when she grew up; last night she told us she’d like to be a dancer and a babysitter.

She is, in equal parts, a giant pain in the ass and an absolute joy. About right for 15, no?

There’s another birthday today, the birthday of this blog. I know it’s weird to remember the birthday of a tiny media outlet, but it’s pretty easy to remember that I started Girl in a Party Hat on Sophie’s fifth birthday. Today that girl is 10. I baked her a cake, which Annabelle decorated.

This blog has been such a gift to me. I met some of my favorite people through it, worked out some problems on it, documented highs and lows and, I hope, offered a glimpse of what it means to raise a child with Down syndrome in the 21st Century.

I’ve definitely slowed down on Girl in a Party Hat in recent years, partly because I’ve been busy and sometimes a Facebook status update does the trick, but also because I’ve been holding back as Sophie gets older, and more aware. Sophie loves that I write about her, she always has. Last week she talked me out of three copies of my books, which she signed and gave to three of her high school friends.

“Mom,” she told me recently, “it’s time for you to write a second book, one about my teenage years.”

Not so fast, I told her. “We’ve got several years to go.”

I’m okay with taking our time. At almost 17, Annabelle is entirely too grown up — driving, taking the SAT, wrapping up her junior year of high school.

And so this morning, when Sophie asked for coffee again tomorrow, but in a sippy cup this time instead of a mug, I smiled instead of cringing — and said okay.

 


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Party Hat

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Several weeks ago I asked readers and friends and readers who are friends to share stories of inclusion — what works, what doesn’t work. I got a wide range of answers with some repeating themes, and today I’d like to share them with you. I left names out on purpose, since not everyone is an oversharer like me. Thank you for sharing your experiences — it meant a lot to me to read about them, and I bet it will mean a lot to others. Later this week I’ll share some thoughts about Sophie’s first year of high school.

*

It was not my son’s first choice (marching band was but we quickly realized that would not work for a variety of reasons)…so we tentatively asked about Army JROTC and everyone said “Yes” and it was the best decision in retrospect, curriculum already designed for peer support and inclusion as well as real leadership opportunities that my son craved. It gave him a group of true friends at the sporting events (JROTC worked every event), weekend fundraising car washes (I may have engaged in a bit of bribery — always having him be the kid who showed up with the ice cold sodas and pizzas), and all the special events, military balls, veterans parades, etc.

He is almost 27 and still friends with many he served with. I should note that I had no prior military background and my son’s dad is a Buddhist, so this definitely was NOT our first choice. Sign language as his foreign language was a great choice as well as the honors classes in English and history.

*

I feel like I don’t have a positive example to offer. Kids are nice to mine (an eighth grader with Down syndrome), all high fives on the way out of school. But watching him dance on the outside of a dance circle made me want to vomit. The circle shifted and enclosed several different kids at various times throughout the night, but not my kid. He danced the whole time, all by himself. He said, “I danced like Kevin Bacon, Mom.”

I was thinking, “Ya at the beginning of the movie, when he was a total outsider.” Seven hundred friends on Instagram but not one invite to anything (birthday thing, jump place thing, after school yogurt) in 3 years. I dread the promo dance, grad field trip to Big Surf, and endless promo party pics that he will either be on the sidelines or not invited to.

*

When my son (who is now in college and has epilepsy) was a junior there was a girl with a wheelchair who ate lunch every day in the nurse’s office. When I noticed I asked Brennan about her and her solo lunch (he went to the nurse’s office every lunch for meds). Brennan didn’t know why the girl ate alone like that (and he wasn’t going to eat with her because he had a girlfriend to make out with). I was angry at the school for letting this go on all year. The good (sorta) news is that the next year she didn’t eat alone anymore. I think a relative started school there that I saw her with regularly. I wanted my son to fix it. I wished there was something I could do. I was mad that no staff seemed to fix it somehow. I don’t know what the parents knew. At least you know and can ask for some help.

*

My daughter (a high school student with Down syndrome) is boy crazy and obsessive. Stalking is a good way to describe it. She calls me “Caleb” and pretends I am this kid she likes. She literally greets me, “Hi Caleb.” It’s exhausting. She also has crushes on a few pop stars and a typical student in her theater class. I remind her not to say, “He is my boyfriend” in that class so that she doesn’t embarrass him.

I think she is lonely. She’s an introvert, so school is where she is around people, and none of her classes are very good. I only have her go a half day. She won’t be able to graduate technically because she won’t have enough credits, but I honestly don’t care. I hope better things are coming. I can’t wait til summer.

*

My typically developing daughter has struggled to make friends in high school. I have no help to offer. I seem to remember that high school sucked even when I attended.

*

Until my son (now an adult, he has Down syndrome) became the “assistant” to the baseball team high school was horrible. But in the spring of freshman year the coach invited him to be the team assistant and my son was finally a part of a group and had a sense of belonging. He was the only student with DS or anything other than a learning disability mostly-included in his high school. And there was a “severely handicapped special day class” on campus. THAT class left campus…on Fridays—when there were pep rallies, assemblies and fun opportunities to be socially included on campus. Such a disservice to the students.

But I digress. My son had no peers with DS in his classes—and the typical peers included him in when he showed up but never had one call and invite him to go with them.

….We created “Cool Club” in high school. Twelve friends with a variety of disabilities—each family planned an activity one weekend every 12 weeks for the group to do together. That gave Sean the social circle he needed outside of school.

*

My daughter (an adult with intellectual disabilities), was very happy in high school and often talked about all of her friends. But none of these friends called or asked her to do things with them. And when my daughter asked them, it was seldom acknowledged. (She did have one special needs friend and they did things together.) For graduation, though, two of the most popular kids asked my daughter to walk with them. I have no delusion that this was a generous offer on their part, but still — it made my heart happy.

*

It will be ten years this June that my daughter (she has Down syndrome) graduated. She is still madly in love with one of her teachers. Still surfs the web to find any and all pictures of him and snaps them on her phone. She still believes he is going to divorce his wife and marry her. This week a teacher at the same school who is a customer at our shop came in. She knows the whole story. She was one of the females that helped him understand that he had to stay away from my daughter. Like avoid her at all cost. Being take the really long path around the building when classes changed so she wouldn’t see him.

This week when the woman asked how my daughter was doing I said great although she is still pining for Mr. K thinking he is going to divorce his wife. In all seriousness she said…”He did.” Oh lordy lordy lordy I can’t let that slip out to my daughter. But now I feel like I’m withholding information. It’s never easy. I don’t think there are any right ways or wrong ways. Sometimes we just need to let life happen.

*

So high school ended last May, my daughter (who has Down syndrome) graduated with her class, fully included, or was she? Senior year was her most inclusive year, educationally. She loved her time in the chorus, teacher was great, loved having her there, students were kind and accepting, but no one invited her anywhere outside of school. She loved drama, had parts in all the musicals, teacher was skit-zo, sometimes saying she enjoyed my daughter, other times complaining her head off!! I was hugely involved in drama, food, costumes, chaperone….My daughter was better behaved than half the typical kids.

She ended up leaving lunch early (and had speech at that time) because she just couldn’t get the social piece. She took kids’ food and pushed and fooled around (just like she saw everyone else doing, except she didn’t have the same relationships). Her married sister took her to homecoming and proms, she wasn’t interested in sports. Academically she did great, gen ed classes with support facilitation (ESE teacher push in). Hundreds of acquaintances, no friends.

Fun story: She got to hug the cute guy in drama, hold hands, he was so sweet to her. I said to one of the girls that my daughter had such a crush on him. She said, we all do, wish he was that nice to me!! To my daughter, it was a very real relationship. Perception.

So, I’m rambling…. My daughter loved high school and was ready to graduate and move on…. What more do we want for our kids?


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Party Hat

The Magic of Public Education

posted Wednesday April 25th, 2018

thumbnail-18Once upon a time, in a land scorched hard and dry by the sun, public education was in trouble.

For decades, the state’s leaders had starved the schools — underpaying teachers, letting buildings decay, and concocting elaborate schemes to create shadow school systems to replace the ones they’d all but destroyed.

These leaders founded and worked for these alternative systems; they profited on the backs of the children. The people failed to elect better leaders, and they paid dearly for it. The schools continued to decline. Teachers did not make a living wage. Test scores dipped, economies soured.

That is a true story. It’s what’s happening right now, here in Arizona — my hometown state, where I was educated in public schools, where my children are educated.

It’s not the end of the story. It can’t be. But actually, today, what I’m interested in is the middle of the story.

What I’ve seen happen in classrooms in Arizona in the last dozen years is nothing short of magic. And I worry that in all the marching, the politicking, the negotiating and (sadly) the shaming, the magic has been forgotten.

If you have — or have had — a kid in public school here, I bet you’ve seen it, too.

I’ve written a blog about my daughter Sophie for almost a decade. It’s about life, but when you’re a kid, life is mostly about school, and so this blog has been mostly about school — about Sophie’s experience at Arizona public schools. I’ve done my best to catalogue the good, bad, and uncomfortable, believing it’s important to let it all hang out, but today I want to talk only about these people who manage to educate with little more than thin air.

Like the magic of the pre-school teacher who taught me to be in awe of my kid and her accomplishments (rather than her shortcomings), who quietly urged me to push to have Sophie included at our neighborhood elementary school.

The kindergarten teacher who taught Sophie to write her name by the end of the first week of school, even after therapists insisted it would never happen.

The second grade teacher who could casually clap her hands together three times and instantly capture  the attention of 25 7-year-olds.

The fourth grade teacher who purposefully taught literature that included the word “retarded,” then led an amazing lesson where the kids discussed language and name-calling and life.

The P.E. coach who taught the entire school the Thriller dance.

The music teacher who didn’t mind one bit that my kid couldn’t stay on key, only that she loved to sing.

The fifth grade teacher we still run into at the neighborhood Chinese restaurant, who remembers not only Sophie’s name but her passions and dislikes, and makes room at her table so my kid can sneak away from ours to catch up.

The seventh grade English teacher who taught with such passion and attention that she was able to capture my kid’s imagination and get her to write.

The eighth grade Social Studies teacher who once told me, between fits of giggles, about how Sophie was conflicted because she hated Republicans but had a big crush on Paul Ryan.

The high school dance teacher who put my kid onstage last week and let her shine.

And then there are the therapists who helped to teach Sophie to walk and talk, the school counselor who started a Best Buddies program, the staff who encouraged the principal at her middle school to create an inclusive drama class. That’s a very short list and that’s just what I know about. My point is that these people are making magic all over the state, every day, with all of our kids. Backward, in heels, blindfolded, bound and gagged.

This fairy tale has grown dark and cruel. Some of my best friends are teachers and — clever-ish writing devices aside — they don’t relish the role they’re playing. They are heartbroken that it’s come to this, and terrified. I guess I shouldn’t be surprised by the teacher-shaming going on, given the politics in this state, but I am. For years, my friend Rachel ran the school carnival at the school where she taught because there was no “P” in the PTA there. My friend Trish can barely speak of her students without getting choked up.

If you want a villain, ask the governor why he thinks he has any right to make any decisions regarding public education when he sends his own kids to an expensive Catholic school. Ask the vast majority why they don’t vote. Beg our legislators to get lost.

Once upon a time, in a land scorched hard and dry by the sun, public education was in trouble. The teachers walked out and the schools closed and the question remained: Would there ever be a happy ending?

It’s going to take some magic.

 


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Party Hat

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The other day I was excavating Sophie’s bedroom (if you have a teenager, you know what I mean) and happened upon a middle school relic, a Best Buddies application.

Sophie has Down syndrome. She’s the target audience for Best Buddies, a kid who should be matched with a typical (or choose your favorite term for such) kid, right?

Not according to Sophie. It’s hard to read but look closely at the crumpled application and you’ll see that Sophie was applying to be a peer.

Awkward.

When she started middle school, I begged the staff to start a Best Buddies program. They did — one of the few junior high-level clubs in the state. The local administration for the national organization left something to be desired (more than once, the year’s biggest local Best Buddies event was scheduled on the same day as the local winter Special Olympics events, leaving kids with very few options to begin with a Sophie’s Choice. One year we tried to do both and it was a disaster) but I know everyone was trying.

Except Sophie. She was not interested in the Best Buddies model, not as it was intended for her. Like I said, awkward. I cringe at the thought of her turning it down, but I get it, too. Sophie takes math and English alongside her typical peers, but when it comes to extra curriculars, there’s only one club where she’s truly welcome.

It’s been the same in high school. Sophie attended a meeting of a Best Buddies-style club, in which kids from the self-contained special education program at her school are matched up with typical peers. Again, she decided it wasn’t for her.

She also decided last week, after the first miserable day of tryouts, that cheerleading isn’t for her, either.

So what’s in between? In between is Sophie herself, working on a daily basis to worm her way in at the school she loves so much. On the outside is ballet class, a theater troupe, and unified Special Olympics cheerleading. Sophie keeps busy, outside of school. Inside of school, not so much.

Best Buddies is great. But it’s not everywhere and it’s not enough.

 


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Party Hat

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Sharon Cowan Landay is the amazing mother of Sophia. I met Sharon when she took Mothers Who Write, the workshop I co-teach, and we stayed friends on Facebook. I saw her post last week, looking for someone to accompany Sophia to her senior breakfast, and I asked Sharon to write a guest post about the experience. She did that and more, and I’m so grateful. 

Thirty three days – this is the number of school days left in Sophia’s senior year.

The completion of four years of high school in Arizona means Sophia will have attended approximately 720 days of school. Sophia is what society calls Special Needs. Foolishly, I thought that this descriptor would not exclude Sophia from a typical high school experience. Four years ago, as we were completing an IEP for Sophia’s freshman year, I had the dream, though now it seems it was a delusion, that students in the “mainstream” would embrace Sophia, invite her to activities, engage her, find her amazingness, value her for who she is – all the things the media portrays when you see stories of the student with special needs who was voted Homecoming Queen/King.

Yah, that didn’t happen. Not even close.

Sophia is my daughter. She is also so much more. Sophia was born at 40 weeks, approximately 7 pounds, and had an Apgar score of 0. She has endured, recovered from, and thrived following 7, maybe 8, surgeries. At 17, Sophia is all of 75 pounds, 4 foot 11 inches. In her 17 years, Sophia has received many diagnoses. The first, given when she was just 28 days old, is ACC – Agenesis of the Corpus Callosum (www.nodcc.org). These Latin words mean that the fibers that connect the left and right hemispheres in the brain did not develop. This, as best we know, is Sophia’s “umbrella” diagnosis. All diagnoses that have come after are likely related to this midline anomaly.

Though Sophia developed slower than books tell you an infant/toddler should, she did develop. She walked at 2. Her verbal skills exploded around 2 ½. Sophia walks, runs, climbs, rides a 3 wheel recumbent bike, and stares at screens with the best of ‘em. Sophia rides horses once a week. She colors on the driveway with chalk. Like most every student, Sophia has slung a backpack over her shoulders for 12 years. She writes and tells great stories, often pirated from a show she has watched or a book she has read. Her grammar is atrocious, so grant-writing is out as a career. Sophia has a basic command of elementary math — addition, subtraction, multiplication, as well as knowing how to figure perimeter of a polygon and what a noun is. She has very little concept of the passage of time: five minutes could be two hours, and an hour could be three minutes, so she won’t hold the stop-watch at track events.

She loves animals. All animals. Her goal and dream is to work with animals. She will pet anything, loves pictures of everything, and has no fear of any animal (or insect. Eww.)

In the past four years, Sophia attended 0 school (sports) games, 0 school dances, 0 after school activities.

Sophia would, usually once or twice a year, tell me about a school activity that she wanted to attend. A football game; Homecoming; Prom; Coffee House. Activities that many kids attended, with friends, assuming this as their right as a high school student. Sophia did attend Coffee House one year, with a Respite provider (who graduated from the same school 4 or 5 years earlier). Not a friend, rather someone paid to hang out with her. (I would say babysit, but she’s in high school and it doesn’t sound right.)

In the past four years, Sophia has attended approximately six “mainstream” classes. The rest of her classes were modified, attended exclusively by students receiving Special Education services.

In these same four years, the number of “gen ed” students that called/texted Sophia – 0.

Number of students that invited Sophia to an after school activity – 0.

Number of students who called Sophia a bitch (because they lack the social skills to have healthy friendships) – at least 3.

Number of classes in which Sophia learned something new – maybe 2.

Number of hours spent “working” in the cafeteria, under the guise of “job training” — at least 180, quite likely more.

No one should walk away from high school with 0 friends.

This spring, Sophia heard that there would be a Senior Breakfast.

While the other seniors learned of this sometime in March, Sophia just got wind of it the week of. Yes, last Monday she came home telling me about the Senior Breakfast that would be Friday morning, stating she wanted to attend. On Tuesday she brought home the requisite permission slip. Even the permission slip assumes typicality – students would transport themselves. (Every senior drives?)

I didn’t give Sophia an answer immediately. I thought about it. I decided I would publicize our vulnerability (to my Facebook network), asking if any other seniors might be willing to be Sophia’s “friend” for the morning, so that she would have someone to sit with.

Radio Silence.

I do get it. They are seniors too. This is their Senior Breakfast. This is one of their final hurrahs.

But what about Sophia?

With a lot of nervousness, I took the signed permission slip and fee to the high school and purchased Sophia’s entry to the Senior Breakfast. Friday morning Sophia woke up, excited for the breakfast. I drove her to the location, walked her part way in, and watched her walk the remaining distance behind two unknown classmates.

Sophia sent me a text picture of her breakfast. She told me she was sitting with Brooklyn. Brooklyn is a junior. She was at the breakfast as a student government representative. She found Sophia and joined her. Sophia did not sit with any seniors. Sophia might have said hello to a few, and vice versa, but she was left alone.

The saving grace, in a twisted way, is that Sophia didn’t seem to notice or care.

I noticed and I care. I will always notice and always care.

Sophia went, she was happy, and that has to matter.

I hold no bad feelings toward any student or parent. The school failed Sophia. The district failed the school, that failed Sophia. For four years, students could have been part of Sophia’s high school experience. Instead, she spent four years in relative isolation. Didn’t anyone think to encourage friendships among different kids? Didn’t anyone remember there was a group of students, off in a proverbial corner, who might want friends? She seems to be a forgotten student.

Even worse, there are so many just like her in their isolation.

Sophia will complete high school soon. Sophia will complete high school with, it seems, no genuine friends. No one to celebrate with. No one to realize she, too, completed four years. 720 days of missed opportunity. I’m sad for Sophia, but I’m also sad for the kids who did not get to know her. Sophia’s love for Fairly Odd Parents, Teen Titans Go, animated Disney films, Disney villains, and Top 10 Lists for anything related to any animated show, should not disqualify her from developing friendships.

No one should walk away from high school with 0 friends. Yet, here she is. Three Dog Night sang “One is the loneliest number…”

I think zero might be lonelier.


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Party Hat

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Sophie was applying her third layer of mascara (mostly to her lashes) and muttering under her breath.

“I’m taking a big risk today.”

“What?” I asked, looking away from traffic for a second.

“Nothing,” she said quickly.

“No, tell me,” I urged. “Did you say, `I’m taking a big risk today’?”

“Yes.”

“Oh, because cheer tryouts begin this afternoon?”

“No, because choir auditions are today at school. Can I put on a song?”

She grabbed my phone and cranked High School Musical, as if on cue.

This is high school — so far, anyway — for Sophie. There’s a lot of good. And there’s some not-so-good. Yesterday I hung up the phone with the director of special ed for the school and wondered, am I doing this even remotely right? Am I asking for enough? Too much? What does this guy think — of me, of Sophie? He laughed a little when I said Sophie was trying out for cheer. What did that mean? Pride? Nerves? Something else?

My current requests: I asked if the speech therapist could work with Sophie on non-verbal social cues, with the hope of limiting what can only be called stalking. If you are the object of Sophie’s affection, watch the fuck out. If you are a teenage boy trying to navigate high school and Sophie simultaneously, I feel for you. But I’m also not your hugest fan when I hear that your phone — texts, Snapchat, Instagram — is suddenly “not working.” I do,  however, get it. But could someone else — like an adult — get it, and try to fix it, or at least smooth it over?

Isn’t there any way for the best buddies group to find Sophie some peers to have meaningful friendships with? I asked the special ed director. He said yes, acting like I hadn’t been begging for this at meetings all year. (To be fair, he’s only been at the school since January, so he’s only heard me beg once or twice. The rest of the team has been hearing it all year.)

We’ll see. Sophie is still happy at school — my main goal. It’s only freshman year. Eventually she’ll make it onto the cast of a school play or even onto the cheer line, right? She’ll make a real friend, yes?

Yesterday a friend of mine posted on Facebook, asking if anyone with a kid at her daughter’s high school would be willing to sit with her kid — who has special needs — at an event for seniors. I saw that and cringed and realized that that “yes” is not a given.

My friend’s post concluded:

I also understand this is your senior’s final hurrah, too. I respect their privilege to enjoy their last few weeks without feeling the need to embrace an outsider. No guilt. No pressure. Truly. I’m so excited for this chapter to close. Cheers, friends. We’ve lived through 4 years.

I hate to think that all Sophie will do is live through the next 3-plus years. But I’m at a loss. What should I expect? What should I do? I need help.

And so, friends, I’m crowdsourcing. Tell me your stories — here in the comments, on Facebook, message me at amysilvermanaz@gmail.com and I’ll put together a post. What worked for your high school-aged kid? What didn’t work?

What should inclusion in high school look like, anyway?


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Last night we had a family reunion of sorts. Annabelle and I had traveled to northern California for spring break — the college tour has begun — while Ray and Sophie attended his grandfather’s 100th birthday party in New York. We regrouped over beer (for the grown ups) and Cornish pasties and I realized that today was World Down Syndrome Day.

“So, um, you’re supposed to wear crazy socks or something like that,” I told the girls. Sophie made a face.

“Well, you could wear a tee shirt that says something about Down syndrome,” Annabelle said.

Sophie shook her head.

I get it. I like to say that for me, every day is World Down Syndrome Day — but for Sophie, it REALLY is. And I can only imagine what goes on in her head in such situations. I got a taste last night.

“Hey,” Ray said. “In honor of World Down Syndrome Day, we should tell people about how Sophie can do a slope equation in algebra.”

Annabelle, Ray and I started compiling a list — Sophie can do the splits, Sophie knows the capital of the Byzantine Empire, Sophie can use a computer better than her mom, Sophie can swim the butterfly, Sophie has a poodle, Sophie is an amazing modern dancer.

Sophie shook her head hard and told us to stop. Then she got up, moved to the next table, and started tapping on the phone. She came back with her own list — way better than ours. I’d envisioned 21 items in honor of that extra 21st chromosome, but Sophie got to 32 so what the heck, here (completely unedited) is her list of 32 Things Sophie Wants You to Know About Her on World Down Syndrome Day:

Sophie Likes to Make friends easy
Sophie is a nice sister
Sophie has good friends
Sophie is nice to others
Sophie has a lot of friends who are boys
Sophie is kind
Sophie is nice
Sophie likes to hangout with her babysitter
Sophie hangout with her Friends
Sophie likes watch her show fuller house
Sophie likes to lo listen to her music
Sophie cuddles with her mom
Sophie has a book about her
Sophie likes to have sleepovers with her friends
Sophie likes to travel
Sophie likes to try new foods
Sophie does not like spicy food
Sophie is awesome
Sophie is the best
Sophie is a good dancer
Sophie likes to sing
Sophie likes to act with friends
Sophie does camps in the summer
Sophie is kind to others
Sophie is sweet
Sophie likes piglet
Sophie loves To watch fixer upper and cuddle with her mom
Sophie has good clothes
Sophie has an amazing sister in The Whole wide world
Sophie likes to go shopping
Sophie does cheer
Sophie loves cranberry juice


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The Spaces in Between

posted Saturday March 3rd, 2018

 

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It was a pretty Arizona winter night. The church grounds felt like they went on for acres, probably because they did, and as I waited I tried to distract myself by wondering how much this North Scottsdale real estate is worth. A lot.

Modestly dressed middle-aged congregants gathered outside in a courtyard, lining either side of a red carpet, as an announcer I couldn’t see introduced the guests over a PA. He called each one by name, welcoming them to the church, telling them, “Jesus loves you! This is your night to shine!”

Finally, after what felt like weeks but was probably 20 minutes, he announced Sophie’s name. My little agnostic Jew bounded down the carpet, grinning, a fancy corsage hanging from her wrist, and struck several poses for the photographer.

It was awful.

And awesome.

Sophie had a blast. She ate garlic bread and sang karaoke. Every party guest got a crown.

That is where I live these days, in the spaces in between. In between awful and awesome. It was Sophie’s idea to go to the prom. I didn’t even know who Tim Tebow was, until she found a flyer at a play rehearsal and insisted I sign her up, buy her a dress and new eye makeup.

How could I explain to my almost 15-year-old that I hate it when people commit good acts simply in the name of religion, that the term “special needs ministry” makes my skin crawl? That it’s horrible to segregate people with disabilities like this? That after no one wanted to go with her to the Homecoming dance at school she finally had a chance to attend a fancy event but I wouldn’t let her?

So I took her.

I want to say that it wasn’t so bad but I just told you how bad it was. It was bad. But it was also good. Because rarely in life are things that black and white. Definitely not in this so-called community of people focused on disability rights. (Yes, I know, the title “disability rights” is controversial. There’s no right way to describe anything anymore.)

In other places, I don’t make space. None of this applies to Donald Trump or gun rights or how I feel about grammar. But in this part of my life, the Sophie part, it’s different. It has to be. This isn’t academics, it’s live time. For all of us, life is a series of constant recalibrations, moving targets. Most days, a vicious game of Whack a Mole.

If you’re looking for me, I’ll be in the spaces in between. For example:

You can be 100 percent pro-choice and still want better prenatal education for a woman who finds out she is expecting a baby with Down syndrome.

It’s possible to hate the fact that a boy with Treacher Collins syndrome was not cast in the lead for the movie “Wonder” but still love the film and have a good ugly cry, and particularly love the discussions it sparks among your teenage kids and their friends. And among you and your friends.

It could be that it was absolutely the right decision to mainstream your kid in school — and that still, every day is impossibly messy in ways that make you want to poke out the eyes of well-meaning teachers, staff and administrators, followed by your own.

It’s okay to admire the matching tattoos lots of moms of kids with Down syndrome are getting — and to also have absolutely no desire to get one yourself, not only because tattoos look like they hurt a lot but also because you’ve spent the last 15 years learning what makes your kid unique, not what makes her the same, so if you get a tattoo for her it will be something no one else has.

It’s possible for your kid to know every single student at her high school — to get high fives and hugs and lots of love from her classmates every day — and still not have a single true friend.

It’s okay to be in awe of the fact that there’s now a Gerber baby with Down syndrome, to think about what that would have meant when your own daughter was born and you felt so alone and like no one out there even knew what Down syndrome was (including you) and to marvel at how far we’ve come, even if it’s not far enough and even if there’s a very strong possibility that Gerber is a crappy company doing this for some of the wrong reasons.

It’s possible to hate the school choice movement — particularly because it excludes kids with disabilities and is re-segregating our schools — and still choose to send your typical kid to a charter school because you believe it’s the best place for her.

Speaking of that typical kid, you can simultaneously feel that having a sister with special needs is the best thing that could have happened to her, and potentially a burden that will ruin her life.

It might well happen that you grow up hating cheerleading and all that it stands for and swear that your daughters will never be cheerleaders — until the day your daughter doesn’t make the cheer squad.

You can be a huge champion of the First Amendment and still have the right to ask people to not use the word retarded in front of you.

It’s just fine if you don’t like everyone in the disability rights community. Some of them might not like you, either. Just because you both have a kid with Down syndrome doesn’t mean you have anything in common. But some of them might become your favorite people.

And it’s okay if you find yourself at church on a Friday night, even though the idea of a special needs prom makes you wildly uncomfortable, because you’re in this for your kid and she begged to go and the world isn’t perfect — and neither are you.

 

 

 

 

 

 


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So far, I have not failed at high school.

This morning — the first back after the two-week winter break — Sophie popped out of bed, drank her Carnation Instant Breakfast, and chose a cute new outfit. She refused to brush her hair, but found her ID, remembered her lunch, and cranked Stevie Wonder, then something from Glee, then the theme song to The Office in the car on the short drive to school.

“This will stay with me all day!” she announced cheerfully, pretending to play the piano along with The Office.

I, on other hand, could barely open my eyes. I piled my hair on my head and wrapped a soft red shawl around my pajamas, not bothering to change out of my slippers, looking, I’m sure, like some sort of drunk, though I swear, the strongest thing I’m drinking these days is kombucha. Up an hour before Sophie to make lunches and coffee, I was pretty much ready to go back to bed by the time we had to leave the house, and I found myself purposely missing a yellow light so I could stay in the car a little longer, prolonging the agony of the fluorescent-lit main office where I drop Sophie each morning with her aide.

“Bye Mama! Have a good day!” Sophie said, swinging on her backpack and swiping her mouth with the back of her hand in preparation for a kiss on the lips.

I slouched back to the car, where I sat for several minutes as the sun finally rose, sending emails and texts to school personnel and other parents in my ongoing, desperate attempt to stay one step ahead of Sophie.

If she’s happy, I’m happy. And so far, Sophie insists she loves high school. I’m glad one of us does and I call that success. It’s my job, I figure, to manage things behind the scenes to keep it that way. But I’m not sure how much longer I’ll be able to do it.

Let’s just say that last semester didn’t end well. Sophie failed all of her academic finals. She passed all her classes, and even did well in a couple, but those four Fs were all I saw when I looked at her report card.

I don’t care much about grades — not for either of my kids — but this is different. This is failure. This means things are not right. This is not the way I wanted Sophie’s second semester to begin.

Honestly, I’m out of ideas. Nagging obviously doesn’t work. The week before finals, I sent several emails to special ed personnel at the school, asking (begging) them to tell me how they were going to modify her finals.

Instead of responding — and working to make sure Sophie’s finals were accessible while still meeting state standards — her case manager emailed me a copy of a form he insisted needed to be signed and returned immediately. He sent a hard copy of the form home, too, very concerned that he get it right back.

I confirmed with Sophie’s lawyer that that particular form doesn’t need to returned for at least three and a half years.

And why weren’t Sophie’s finals appropriately modified? Because the paperwork calling for such a thing — her IEP (Individualized Education Plan, the legally binding document that follows her through school) —  is currently being revised, which I guess means that no one needs to bother to give my kid a fighting chance until signatures are in place.

It makes no sense. And that, my friends, is special education policy in the United States of America — and really, while I’m at it, education policy in general. There is no room for critical thinking, only space to fill in the blanks. We teach to the test, almost always with poor results, made much worse when it comes to kids who learn differently and when that kid is profoundly different but still capable of learning and growing, forget about it.

Here’s what it boils down to, here is my plea — and I bet I’m not alone:

STOP LOOKING AT PAPERWORK AND START LOOKING AT MY KID.

That’s what I’ve been asking these people to do since high school started.

They can’t. Or they won’t. Or they figure that if they ignore me long enough, I’ll go away.

Trust me, I would, if there was another fucking place to send Sophie. But there isn’t, not even in Arizona, the school choice mecca. We’re stuck with each other, high school.

At least Sophie’s happy. Those Fs aside, she appears to be learning. She’s comfortable at the school, making friends (sort of). Happy to get in the car each morning.

I haven’t failed — yet. I can’t.


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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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