her place

Katie, Aug 2010

**

Katie stopped and sat down on the stairs on the way down to breakfast – never a good thing on a school day morning. There’s just enough time for eating, toileting, dressing, tooth brushing, medicine taking, vitamin picking (can’t have two gummies the same color or apparently the world comes to an end), hair brushing, toileting (yeah, again), communication log book filling, lunch making, library book hunting, backpack filling, shoe finding, running late and hurrying out the door. There’s NO time for sitting on the stairs.

“I don’t feel well, Mama,” she declared in her best “I don’t feel well, Mama” voice.

I looked at her. She had her arms wrapped around her tummy.

“Sorry, baby,” I said, “But I’m not buyin’ what your sellin.”

She looked at me, surprised. And then she remembered she wasn’t supposed to be feeling well, so she quickly changed “surprised” face back to “Oh yeah, I’m not feeling well” face.

“Sweet girl, you made a fatal error.”

She looked incredulous. “I did?”

I nodded. “Yup. You asked me last night if you could take the day off today. ‘Member?”

She looked down at her feet. “Oh yeah. That.”

“So what’s really going on here?” I asked.

“I’m scared to go to school,” she said. “I don’t want the kids to tease me about my eye.” Two days before she’d tripped on a stone wall. She’d gotten a pretty decent gash above her eye that landed us in the ER, but it was now, thanks to the incredible medical advance that is DermaBond, pretty much a non-issue. So, yeah. Still not buyin’ it.

“Katie, love? Your eye is fine. Call me crazy, but I think we’re just needing some attention here. And I’m pretty sure there are MUCH better ways to go about it. Starting with breakfast. Off your bottom, kid.”

She got up looking dejected and followed me into the kitchen. She pulled her chair closer to mine as we sat down to eat.

“Mama,” she said. “I really do need some attention.”

“I know baby, and we’re going to make time today, OK? Just you and me. I promise.”

Her face eased a little. “Promise?”

I nodded emphatically. “I promise.”

I knew we needed time together. Real time. Alone. And I knew it wasn’t just her that needed it. We both did.

I knew the other day when she handed me a tattered piece of paper that read, “I’m Sorry.” I knew when we sat on her bed and both of us quietly cried. I knew because when I asked her why she was sorry she had said, “I don’t know, Mama, but I haven’t been good lately. I just know it.” I knew because sh-t rolls down hill, and there’s been a lot of sh-t rolling down some pretty steep hills around these parts the last few weeks. I knew it because my girl was struggling with some vague sense of having done something wrong only because she was standing at the bottom of the hill.

I would find time.

We carved out a couple more minutes between toileting, hair brushing and shoe hunting to talk again. I told her that I knew that we’d spent a long day the day before focused on her sister. I told her that those days can be emotional for me and I suspected that they are for her too. She nodded and grabbed my hand. I squeezed it and told her that I guessed that sometimes it can be confusing, figuring out her place in all of it. She blinked back tears. I told her that I loved her and promised that we’d find more time.

Last week, I filled out an application for a Sib Shop for Katie. She has one at school, but I thought it might be nice to branch out from the same kids year after year. One of the questions on the form was, ‘Are there any particular topics that you’d like to see the group address?”

I started to think about it, but realized I wasn’t the one this was about. So I asked Katie. I thought she might hem and haw, or simply demure with a typical fourth grade, “Whatever.” She did neither. In no time at all she answered, “I want to talk about how to deal with being embarrassed and how you can make new friends when they don’t know about your sibling.”

I smiled and said, “Great, I’ll write that down,” but every internal organ had cringed. Of course she does. Of course. Katie doesn’t have a lot of girls over to the house. There are new girls in her class this year. She has yet to ask for a play date with any but one. Of course. How did this not hit me before?

I thought the sib shop was free, but it turned out that due to the ubiquitous funding cuts, there was a fee. We’re trying desperately not to spend money right now, but I didn’t hesitate in writing that check.

On Monday, Luau and I arranged to pick the girls up from school in separate cars. Katie and I headed out without a destination.

When I made a wrong turn I said, “Oops, I just turned this way by accident.”

Katie said, “Mama, I don’t think it’s an accident at all. I think it’s an accident on purpose.”

She then explained that she thinks that when we do something ‘by accident on purpose’ it’s because we are doing what God wants us to. She then added that she really thought I should make turns down any and all streets that we didn’t normally travel on, as long as they were headed away from home. She then said that if we didn’t know where to go at any given intersection, we should go left.

I nearly pulled over to e-mail my friend Carrie immediately, but instead I chose instead to simply tell Katie that Mama has a dear friend who believes the very same thing.

After driving for a while, we wound up in town, sharing a treat from the bakery. I took the opportunity to school her in the laws of baked goods. I told her that it’s a punishable offense to order a fruit treat without an accompanying chocolate one. The elderly ladies at the bakery giggled. I shrugged and nudged Katie as I said, “Hey, we are law-abiding citizens, right kiddo?”

We got our nails done in matching, God-awful dark purply blue. We walked in and out of shops. We found the dog that lives at the local toy store and spent some time playing with her and deciding that as adorable as she may be, she’s no Winston. We went to a pub for soup when the evening turned cold. And we talked.

We made up questions for each other – all the more fun for their lack of context. Vanilla or Chocolate? Beach or mountains? Italy or Hawaii? Soup or stew? Candy or ice cream? Bath or shower? Bed or sleeping bag? Party or play date?

As we got into the car to head home, Katie reached for my hand. “Thanks, Mama,” she said. “I really needed this.”

I looked down at my girl. My beautiful, brilliant, soulful girl. “Me too, baby,” I answered, “me too.”

it’s for me

**

It had been a long, full, long day. Yeah, I know I said long twice.

We had walked (or in Mama’s case, more accurately hobbled) around the track at the Autism Walk. We – or at least the smaller half of the we - had jumped in the bouncy house until Mama finally had to send Miss N in on a retrieval mission. We’d played in the ball pit. We’d eaten pizza at ten a.m. We’d visited with Grammy and Grandpa DD. We’d gone out to lunch. We’d had a grand old time with Miss N and Yo, B! Hell, we’d even lost a tooth for good measure.

We – or the bigger of us at least - were ready for sleep.

We were lying on Brooke’s bed, snuggling together in the dark.

After a day spent immersed in capital ‘A’ Autism – as opposed to a day immersed in little ‘a’ autism which would simply be, well, ya know .. a day - I wondered what she’d taken in.

Did she hear the speaker at the Walk that called autism a ‘disease’? Though it causes much dis-ease in our world, it is actually a disorder.

Did she hear the young adult standing in front of us repeating over and over – and over – again, “Were at the Autism Walk. That’s for me. We’re at the Autism Walk. That’s for me.”?

Did she hear the mom explaining to her grumbling son that he needed to suck it up ‘because we are walking to help the sick kids’?

Did she see the bracelet that her big sister insisted on buying that said, “I love someone with autism”?

Does she remember me talking to her about it before? On other nights, snuggled in the dark, just like this.

Did the word sink in?

Did she connect it to herself? To us? To our family? To who we are?

Does it have any meaning for her at all?

Did she notice it that day? Over and over and over again?

“Hey, Brooke,” I asked into the darkness, trying to sound casual.

“Yes, Mom?” God, how I love that clipped little version of ‘Mom’ – somewhere between Mum and Mom – the word so wonderfully hers.

“Do you know that we go to the Autism Walk because you have autism?”

I was trying hard to sound cheerful – to keep the words light.

It is so desperately important to me that she not grow up internalizing our demonization of autism. Someday she will understand these words. She will know that it is a part of her. Then what? I can’t let her hate such a huge part of her life.

She didn’t answer. She was too busy fiddling with my hair.

I know better than to think that because she isn’t ‘paying attention’ she doesn’t hear me. She may process it three days, three months or three years from now, but I’ll be damned if she’s not taking it all in.

“Baby, do you know that you have autism?”

I’ve asked this question before. I’ll ask it again.

It’s so important to me that she hears it from us and doesn’t take her understanding of autism from a man at a podium shouting for its eradication. It’s far too easy for the lines to get muddled, for the leap to take her where I dread that she might go. Where does my autism end and I begin? If I have autism does that mean that I AM autism? If autism is evil then I must be too.

Add that internal monologue to the list of my greatest fears.

“Do you know what that means, Brooke – when Mama says that you have autism?”

“Nope.”

She answered. On some level, I was getting through.

I measured my words carefully. I knew I didn’t have the luxury of paragraphs. Our world demands that a sentence – maybe two – suffice.

“Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Brooke.”

“Yup.”

“A lot of kids at the Walk today had autism too. There are LOTS of other children just like you who have it too.”

She has the right to a community. If I can help it, my girl will know she is not alone.

“So when I wake up, the tooth fairy will bring me Blue from Blue’s Clues just like my Periwinkle. And then I will have Blue. Blue will be just like my Periwinkle.”

I smiled at her, though she couldn’t see me.

“Right baby girl, I’m sure she will.”

She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.

I stole a kiss before her head disappeared under the covers. She popped back out with a giggle and threw her little arms around my neck as we went through the charade of choosing a number for the nightly countdown. In Prairie Dawn voice, we counted to thirteen. By odds. As always.

We’ve got a long time to wade through this stuff together. One sentence, one bedtime, one Walk at a time. We’ll get through it.

And wouldn’t you know it? In the morning, under her pillow, there was Blue.

autism walk 2010

Autism Speaks Greater Boston Walk

2010

*

Yup, someone actually took an order to print that sign.

*

Jeneil, Rhema, Hope and Katie

Soooo worth wading through the crowd to find them!

*

Brooke, Luau, Jack and Judith Ursitti

In a moment of magic, 20,000 of us sang Happy Birthday to Jack yesterday

*

Brooke flying high with the fabulous Yo, B!, her aide from this past summer who came to walk with us

*

The Walk is so much like the autism journey itself.

Heartbreaking. Exhilarating. Invigorating. Overwhelming. Hopeful. Grateful.

Full.

*

Support.

Tears.

Love.

Four years in I see familiar faces now – wearing such familiar expressions.

We gather together under the banner of Autism Speaks, a group that, like each of us, is imperfect, but that, also like each of us, desperately tries to be the best that it possibly can be in order to do all that it possibly can do for our children.

Comfort.

Understanding.

Community.

With an open heart, an open mind, and most of all – a burning desire to make life better for those who struggle with the challenges of autism.

Hope.

Gratitude.

We walk for answers. We walk to raise awareness. We walk to foster understanding, compassion and respect. We walk to make a better life for those who we so dearly love.

WE WALK BECAUSE TOGETHER WE CAN AND WE WILL CREATE A BETTER WORLD FOR OUR CHILDREN, AND FOR EACH OTHER.

*

A hearty thank you to those who supported Team Umizoomi this year. To both old friends and new, we are so grateful that you have chosen to join us on this journey. Yo!B, Miss N, Mr and Mrs W, Julie, Grammy, THANK YOU. And a very special mention to our own Grandpa DD, who tirelessly photographed the event for Autism Speaks yesterday. (Folks in CT and surrounding states, if you need a photographer, click the link and tell him I sent you!)

fire

*

I don’t know which of us is more nervous.

OK, that’s crap. Yes I do. My baby girl. By far.

The fire drill is this morning.

We’ve done it all right this time.

We waited until the day before – just enough time, not too much time – the constant balancing and gauging and then rebalancing – and well, I hope it’s just enough time and not too much time. And isn’t this the game we play?

We have the Social Story from last year. From the time that we didn’t have any warning and my girl nearly crawled out of her skin.

We have the story about the nice firefighters and how they aren’t usually at school, but once they were because they were testing the fire alarm. About how they keep us safe. How the fire alarm tells us that we need to leave the building so that the firefighters can turn it off. How when the fire alarm is too loud, I can cover my ears and stay with my teacher. How we’ll walk together and wait for the fire alarm to stop and the firefighters to tell us it’s OK to go back in the building. How if I hear the fire alarm, I can pretend it’s saying, “Get out of the building!” in a funny voice.

The story that we had to write with the BCBA after my girl nearly crawled out of her skin.

The story that didn’t stop her from saying EVERY SINGLE DAY since that fire drill- EVERY SINGLE DAY without fail – “No noises at school today. There will NOT be firefighters at school today.” Every single God damned day.

We have the checklist. She knows what to do. Together we read through the procedure. We practiced how her aide will help her check each item off the list.

When I hear the fire alarm I will cover my hands with my ears.

“What will you cover?”

“My ears.”

I will have a quiet, calm voice and body.

“Will we scream and run?”

“No, we will stay calm.”

Then I will line up with my class and my teachers with my ears covered.

“What will you do next?

“Stay with Miss K.”

My teacher will lead me out of the building and away from the alarm.

“Where will you go?”

“Outside.”

I will wait outside with my teacher until the nice firemen turn off the alarm.

“Who will turn off the alarm?”

“The nice firemen.”

When the nice firemen turn off the alarm, the fire drill is done and I will walk back to my classroom with my class and my teacher.

I’ve told her that she’s different this year. She’s more grown-up. She can handle this. It won’t be the same.

As I walked out of her room last night, my girl’s last words for the day were, “Tomorrow is my fire day.”

I left her at school this morning covering her ears. She didn’t believe me when I told her not to worry, that it wouldn’t happen without her knowing.

She was shaking as I kissed her goodbye. I made the funny voice. “What does the alarm REALLY say?” She laughed as we said, “Get out of the building, get out of the building!”

We’re as ready as we can be. All hands are on deck. She’s going to be OK.

She’s going to be OK.

Tell me she’s going to be OK.

semper fi

*

My post a few days ago about the challenges faced by our military families set off an amazing chain of events. I wish I had time to write about them now, but I don’t. What I can do in the meantime however, is tell you that today I have the incredible honor of guest blogging on the Act Today For Military Families Blog.

I am so moved by what these families endure in the name of service. I am shaken by the reality of what happens when autism wends its way into the mix. I am encouraged by people like the formidable Karen Driscoll, who fight to make it better NOW. I am hopeful, because I know that people like you won’t let this situation stand.

Please head over to ATFM and show your support for military families whose lives are impacted by autism. Let them know they are not alone. Let them know that this community will not leave them behind.

Thank you.

-> CLICK HERE <-

Ed Note: I’m being told that some folks are having trouble posting comments on the ATFM blog. If you’d like to leave a comment expressing your support for these families, please feel free to leave it here and I will be sure it gets to them. Thank you!

unexpected, part 2 (an unexpected update)

I’m going!

Holy crap on toast, people.

I’m going!

OK, some background …

It’s been a tough few days around here. The kids are fine, our health is good (torn calf muscle and a little under-the-weather-ness aside), but the weight of life’s external worries has been particularly heavy the past few days. It’s just been, well – let’s just say – it’s just BEEN.

But today – just now in fact – something miraculous happened.

I got an e-mail from Brooke’s private speech therapist, Miss S. You may remember Miss S. She had her twelve minutes of fame here not long ago. Yes, twelve. For the uninitiated, just know this – we LOVE Miss S.

Say it with me, “WE LOVE MISS S.”

So the well-loved Miss S wrote to say that she’d seen the post I’d written yesterday about Michelle Garcia Winner’s sold out two-day conference in October. She explained that she is registered for both days. She proposed (proposed – like I’d say no?) letting me go in her place on either of the days. She wrote,

As you have said, Social Thinking is a great resource that [Brooke] is using so nicely.  And having gone to Michelle’s conference last year, hearing her talk about it and give examples is so incredibly helpful.  I don’t know about you, but I always learn more by hearing someone talk about it first hand than reading about it in a book.  Since you have the opportunity and necessity of fielding more challenging social situations at home than I do in my office, I think it is important that you go.

Could you just cry? OK, maybe not. Maybe that’s just me. But seriously, who does that? Who gives up a spot at a conference that they so obviously value so much? Who recognizes and acknowledges that we as parents often face more complex challenges at home? Who offers up help? Who does that?

Miss S does.

I told her that it was a good thing that Luau was bringing Brooke into her office today. If it had been me, I might not have been able to stop hugging her long enough for them to accomplish anything.

I’m going!

Thank you, Miss S!

unexpected

*

O.K., I admit it. I was a little star struck when I got the e-mail yesterday. When I saw her name in my inbox, I got a touch of the OH MY GOD I’M NINE AND TAYLOR SWIFT JUST CALLED TO INVITE ME OUT FOR ICE CREAM! You know, just a little.

But here’s the thing. This woman has changed our lives. No, not Taylor Swift. C’mon, keep up. And not since college have I thought it appropriate to call a twenty-one year-old girl a woman. No, the woman about whom I write has done something for which I can’t ever adequately begin to thank her. She has given my child a toolbox full of tools.

Without ever meeting my Brooke, she has helped her to begin to make sense of a world that would otherwise continue to confound her.

Michelle Garcia Winner is a hero in this house.

In addition to scores of every-day tools, Michelle has given us the language to talk about behavior in the context of expectation. When you have a child who either can’t control the way that that she acts (or reacts to her world), or who grew up having to rely on her behavior as a means of communication, it’s incredibly liberating to be able to talk about that behavior in terms of what is ‘expected’ vs ‘unexpected’, abandoning the intrinsic judgement in ‘good’ and ‘bad’, ‘acceptable’ and ‘not.’

So when I called Michelle’s office in Silicon Valley to ask about attending a local two-day conference that she is leading, I had to seize the moment. Despite the fact that the conference is so far beyond sold out that they are no longer accepting wait listers, the woman on the phone very sweetly hung in with me while I stuttered and asked her if she actually KNEW Michelle. “Um, Yes,” she answered. Like, duh. You think I answer her phone and have never met her? And she continued to bear with me while I tried to explain that there was a story that I just HAD to tell her because, well, I just HAD to. And despite the hint of ‘OH MY GOD, YOU MEAN YOU KNOW TAYLOR SWIFT LIKE PERSONALLY?’ in my voice, she even gave me her e-mail address and asked me to send the story along so that she could then pass it on to Michelle. So I did.

Here’s what I wrote:

Kristine,

Thanks so much for taking the time to pass this on. I’ve been dying to find a way to tell Michelle this little story. From an outsider’s perspective, it might seem fairly insignificant, but I’m confident that she’ll understand why it is anything but to our family.

My daughter is just shy of seven and a half and has pdd-nos. She has long struggled with, well – everything you’d expect her to struggle with, but employing language and identifying emotions have been two of her biggest challenges.

Meanwhile, we are Social Thinking junkies. Our school system employs Michelle’s curriculum for social pragmatics, our daughter’s private SLP subscribes to it as well, and our home life is peppered with the language of Social Thinking. We have glitches, not catastrophes, we use ‘whole body listening’, we ‘add-a-thought to keep dialogue alive, we are social detectives and most of all, we rely heavily on the concepts of expected vs unexpected behaviors.

This summer, our daughter attended an ESY program with an aide. One afternoon, she was obviously agitated and said, “B* I want to go home.” He was concerned and asked what was the matter. She looked at him very seriously, took her time, and finally responded. I thought her reply was worth passing on.

“B*, sometimes camp makes me feel unexpected.”

A heart-felt thank you to Michelle for understanding kids like mine and offering a road map to help them navigate an overwhelming world. The language of Social Thinking has quite literally changed our daughter’s life, and we are so grateful that she is gaining the skills that she needs to make her way.

Thank you so much!

Warmly,

Jess

She very kindly wrote back and told me how much she appreciated my sharing the story. She promised to pass it on to Michelle. Which she obviously did because Michelle then wrote back too. And SHE said that MY little story meant a lot to HER.

Don’t you just love gratitude?

So, Michelle, now that we’re like best friends forever, wanna call Taylor Swift and see if she wants to grab some ice cream?

~ Ed note: Michelle, if you’re reading this, please rest assured that it’s meant for a laugh and I’m not really a stalker. Though I guess that goes without saying. No autism mom could possibly find the time.

~ Ed other note: When you link over to Michelle’s site, please don’t be scared off by lines like the following ~ “[Social Thinking] is best taught to students with near normal to way above normal verbal intelligence who have language skills. This is a language-based learning approach.”

Though some language is necessary in order for Social Thinking to be effective, the basics do not rely as heavily on sophisticated language as that sentence would imply. As you know, Brooke has had a great deal of difficulty with language and she has benefited greatly from the program.

ACT today

Photo from Rome News Tribune

**

I’ve been holding onto the following post for far too long. I’ve stared at it on the screen, been ready to hit publish, then stopped short time and again.

I’m just not convinced that it makes the point strongly enough. I don’t think that the words adequately convey the intensity, the exigency of the situation. I’m afraid that the post loses something because it focuses on such a miniscule slice of the overwhelming challenges that our military families with autism face. I just don’t know how to get them all in.

But I can’t keep waiting to get it right. Because autism doesn’t wait. Because deployment sure as hell doesn’t wait. And because the families of those who serve our country should not have to wait another day, another hour, another MINUTE  for the help that they need for their children.

**

You hear the words, Your child has autism.

Your world is upside down.

When you finally make it far enough through the haze, you kick into gear.

Where do you begin?

Your pediatrician is likely little to no help.

You start asking questions.

You network.

You find people who CAN help.

You educate yourself. You learn everything you possibly can about all of the various interventions, therapies and educational plans that are currently available. You measure and weigh, compare and contrast, hem and haw and make decisions based on what is best for your child.

You piece together a puzzle of therapies. You create and foster a tapestry of support between home and school, public and private. You scrap and save and sacrifice to make it work. You hang on by a thread.

You follow up. You monitor. You evaluate and analyze. You ensure that services are being delivered as promised. You hawk and hover. You prod and pry. Since you don’t have a child who can tell you about their day, you rely on the adults in their world for insight.

You run from office to office, specialist to specialist. You make sure you’re home on time for the speech therapist and the ABA specialist. You push to create a social pragmatics group or to create access to the local sports team.

And through it all, you work to build and nurture your relationship with your sweet baby.

There’s nothing you wouldn’t do.

You facilitate play dates with classmates – hoping upon hope to help your child create a friendship. Just one.

You fill out reams of paperwork, answer thousands of questions. You go from doctor to doctor with your child, searching for the one that might have the answer.

And then you leave. For twelve, thirteen, fourteen months at a time.

You fly to the other side of the world to fight in a war that your child can’t begin to fathom. You’ve been working so hard on helping him find words, but there’s nothing you can create out of  ’More’ or ‘Cookie’ that will help explain war.

You serve your country because you believe it is right. You don’t ask for anything in return.

You wonder what would happen to your baby if something happened to you.

You see, your husband is in the military too. And he is deployed too. This is war. It happens.

Think it’s hard to find a sitter on a Saturday night? It’s time to find one for fourteen months. One who will piece together the puzzle of therapies, create and foster the tapestry of support between home and school, public and private, scrap and save and sacrifice to make it work, hang on by a thread, follow up, monitor, evaluate and analyze, ensure that services are being delivered as promised, hawk and hover, prod and pry, rely on the adults, run from office to office, specialist to specialist, making sure to be home on time for the speech therapist and the ABA specialist, push to create a social pragmatics group or to create access to the local sports team, facilitate play dates with classmates, fill out reams of paperwork, answer thousands of questions, go from doctor to doctor, searching for the one that might have the answer. One who will painstakingly teach him one word at a time. Who will love and nurture your child as you would.

One in eighty-eight military children is on the autism spectrum.

One in eighty-eight.

And while their parents are fighting for our country, many of them are also fighting for access to treatment for their children.

That is simply not OK.

EVERY SINGLE ONE of those children deserves a chance.

Every one of their families has earned our support.

To not do right by our military families is unfathomable.

We must do better than we are doing now.

If we are to survive, it will be by helping one another.

These people are serving our country. I cannot stomach allowing them to fight another war back home.

Please, watch the video below.

Help if you can.

Pass it on to friends.

E-mail it. Post it on Facebook. Put it on your blog. Tweet it. Twit it. Toot it.

I don’t care what you do with it – just get it out there.

Our military families should not have to fight for services for their children. Period.

Please watch the video, then CLICK HERE for more information about how you can help.

This isn’t about politics.

This isn’t about ideology.

This is about kids who need our help.

NOW.

Please do what you can.

a little recycling

.

.

I’m at Hopeful Parents today, doing a little recycling.

Please click on over!

-> CLICK HERE <-

What are you still doing here?

GO!

not so easy – (alternately titled, why inclusion can’t happen in a vacuum)

**

It sounds simple. Talk to your children, we say. Teach them compassion. Show them tolerance. Guide them to a place of understanding. Tell them that people are different. Foster in them an appreciation of the diversity of the human experience.

Easy, right?

Maybe not so much.

The big lessons might not be so difficult, but what happens when it gets grittier? What happens when the muck of the day-to-day gets in the way and the real-life details complicate the conversation? Then what?

My dear friend, April is the parent we wish they all could be. She’s the one with the open mind, the overflowing heart, and an abiding desire to guide her children well. She is aware; she is sensitive; and she desperately wants to do everything in her power to support kids like ours. She is bright and articulate and as thoughtful and careful as a parent as she is as a friend.

I say all this not to make April blush, but to make the point that there is probably no one better equipped to recognize and handle a tough situation than her.

But even April gets stuck.

Because this stuff isn’t cut and dried. It’s messy. And when there’s nothing to go on but what your first grader is telling you, it can be downright confounding.

April has generously agreed to let me share an exchange that we had yesterday about her daughter, Molly*, a neuro-typical first grader. I am grateful that she’s allowing me to share it because I think it’s important, both for all of us to see these issues from a different perspective and to get us talking about how we might help guide the parents of the children who interact with our kids.

There are good people out there who want to help. What would you tell them?

To: Jess

From: April

Molly mentioned to me tonight that there is a little girl in her class that keeps repeating to her, “Hi, my name is Hope*.” She said she does not say anything else and will not stop saying it even when Molly asks her to. Molly seemed frustrated and confused. I did my best under the circumstances with the facts she was reporting but other than that I know absolutely nothing about little Hope.

What do you think I should do? Ask the teacher for guidance? Reach out to Hope’s parents for a play date? Open house night is tomorrow so I may meet Hope’s parents there. I mentioned a play date to Molly and she seemed anxious about it because she said she cannot get Hope to really talk to her.

I do not want to set up either child for a bad play date but you know my mind is spinning …

I told you she rocks. Anyway, here is what I wrote back. By no means do I suggest that the strategy that I suggested is the ‘right’ answer. It was ‘an’ answer. And no, I don’t use capitalization in personal e-mails. Sorry, Mom.

To: April

From: Jess

… not every parent, especially of the little ones, has necessarily evolved to a place of acceptance and/ or is ready to tackle a conversation directly acknowledging their child’s differences. since you don’t know where the parents may be (and you also don’t know the situation other than through the eyes of a fellow student) i think it best to start with the teacher.

now, as for the approach with the teacher ..

it can get sticky in terms of confidentiality issues, so you’ll want to make sure that you don’t appear to be even inadvertently asking about a diagnosis. instead just focus on your desire to help your daughter navigate what might be a challenging situation in a way that supports this little girl. tell them that you’d love to invite her over if that would be appropriate, but would like some guidance on how to make a play date successful for BOTH of the girls.

truthfully, if it were me, i’d likely just tell the teacher all of it. i’d tell her that you have a friend whose daughter has differences and that you are very sensitive to the issues and you really want to be supportive but you’re not sure how to do it. ask if she thinks the parents would be open to a conversation or how she thinks it best approach them. i tend to go with honesty and full disclosure and then ask for help. makes it far less awkward than trying to dance around the real questions. i think the key is making sure that it’s a private conversation with the teacher, then come back to me and i’ll happily help you decide how to proceed based on what she tells you …

Further proof that she rocks, in case you’re not already on board (and yes, she even capitalizes) ..

To: Jess

From: April

… I will make a point to greet Hope’s parents [at Open House] tonight but with no agenda other than to see if I can lay the foundation for some natural rapport that may be useful down the line.

Also, in the moment [with Molly] last night – I panicked a bit but stumbled through it ok. I feel the need to revisit the issue with more thoughtful advice. I wish there was a post on this with a loose script that I could have fallen back on. Sounds lame, I know.  I think you may have mentioned good picture books on this issue in the past.  I am going to see if I can find them and read them with Molly because I think I was speaking over her head a bit and not meeting her on her level …

Since I didn’t have time to compile a list, I sent her the link to the book that I had put together when Brooke was entering kindergarten.

http://adiaryofamom.wordpress.com/2008/09/17/aut-viam-inveniam-aut-faciam/

There are certainly many ‘real’ books out there now.

The Autism Acceptance Book

All About My Brother: An eight-year-old sister’s guide to her brother who has autism.

Since We’re Friends: An Autism Picture Book

But you may have noticed that all of those books have the word ‘autism’ in their titles. It can get sticky introducing the word ‘autism’ to a neuro-typical six-year-old as a means of explaining the behavior of a classmate who may never have heard the word themselves.

My conversation with April made me wonder yet again how we can expect to enlist the understanding of other kids and their parents without open conversation. What if Hope’s parents don’t want to say anything because they are concerned about ‘singling her out’ or ‘saddling her with a label.’ (I have no idea, of course. This is entirely hypothetical, but follows what I have found to be a pervasive way of thinking in our community.) Unfortunately, Hopes’s behavior has already singled her out. That’s what autism does. It stands out. Neither autism’s gifts nor its challenges tend to hide well. Which says to me that we can’t either.

Whether or not we are the ones to label our children, they are being labeled. Personally, I much prefer ‘Autism’ to ‘Annoying’ or ‘Stupid’ or ‘Misbehaved’ or ‘Spoiled’ or ‘Disruptive’.

These conversations are happening, with or without us. So how would we have them go? What would we have parents say to their kids when they want to support our children but they don’t know where to begin? What would we like them to do?

WHAT WOULD YOU HAVE SAID TO APRIL?

I would be grateful if you would leave your thoughts in the comments.

ed note: I’d also greatly appreciate links to your favorite books for children on this subject. They don’t necessarily need to be autism specific; I’m just looking for stories that teach our kids to understand and celebrate their differences. Thank you!

ed other note: Children’s names have been changed, as always.