my perfect date

My perfect dinner date

Later Wednesday night ..

Katie is sitting across from me at the table, having coerced me to stay out for dinner after her visit to my office. It didn’t take much (coercion that is), but the coercion is part of the game. We both pretend that staying out for (fill in the appropriately timed meal) is not a foregone conclusion. We propose it to Daddy and ask if he’d mind if we stay out ‘just a little while longer.’ He pretends that he didn’t already plan around us being gone. It’s what we do.

She is telling me about school. About the other kids. About the mercurial nature of fifth-grade girls and how much it drives her crazy.

Her face gets serious. “Mama,” she asks, “can I tell you something?”

“Of course, kiddo,” I say. “What’s up?”

She pushes the food around on her plate as she speaks. “It’s just that .. well .. ” She pauses.

I assure her that whatever it is, there will be no judgement.

“It’s just that I feel like everyone else is just so PERFECT.” The word comes out like an angry hiss. Something’s brewing. “It just feels like everything is so easy for everyone else. Like all the girls are just so .. I don’t know, so much more comfortable in their own skin than me.”

Yes, my girl said ‘comfortable in their own skin.’  

I let out a heavy sigh. “Oh, baby. There are so many parts to this. But let’s start with feeling like everyone else is perfect – or that their lives are perfect, OK?”

She nods her assent.

“Katie, everyone struggles with something. Everyone. Some kids have trouble with reading. Some kids struggle to keep up athletically. Some kids have trouble fitting it with the crowd. Some kids are having trouble at home that you don’t see. But EVERYONE struggles with something.”

I tell her the Buddhist parable of the mustard seed – the one that my dear friend Judith shared with me so long ago now. The story of the woman who has lost her son – who believes that she is completely alone in her grief. The story in which the Buddha commands her to collect a bowl of mustard seeds – each seed, he tells her must come from a house that does not know loss. And so she goes from house to house in her village, asking for seeds. And the villagers feel for her and offer them readily. But when she asks if perhaps a son or a daughter, a father or a mother had died in their family, each and every one answers, Yes, we have lost a beloved.

And she discovers that there is no house – not a single one – that does not know loss.

Katie is rapt.

“Baby, you’ve got to remember that what people choose to show on the outside doesn’t mean they aren’t dealing with something entirely different than what you see.”

I tell her that it was a lesson that I learned early. That I might even have been younger than she is now. “”I’ll never forget it,” I tell her. “It’s weird how all these years later, it’s still with me, but it was a powerful moment, realizing just how skewed our perceptions of one another can be from the outside.”

“We had a friend of the family,” I say, “a guy in his early twenties at the time who was a waiter at a local restaurant that we went into periodically. I’ll never forget the day that he told me that he hoped someday to have a family as PERFECT as mine. That my parents had the PERFECT marriage. That everyone said so.”

I tell her that the word PERFECT came at me like a weapon. That I couldn’t imagine that he was serious. MY family? The one that was about to be split down the middle because staying together in a house that resembled a war zone was no longer feasible? That one?

But through his lens, I explain, he saw – or thought he saw – or wanted to see – the PERFECT family.

Katie takes it all in – every drop.

We talk more about perfection – about how boring it would actually be if realized. We continue to talk for a while and then she says, ”I just feel like if I were really myself, like ya know, all the time, I’d be really nerdy and unpopular.”

She’s confused when I laugh. “Oh, honey,” I say, explaining, “I’m pretty sure that if MOST people were really themselves all the time they’d all be nerdy and unpopular.”

“Not Danielle,” she says.

“Oh, Katie,” I say, “especially Danielle.”

She lets out a world-weary sigh.

“It’s just so frustrating,” she says. “Why can’t EVERYONE just be who they are all the time?” She stops talking and plays with her straw for a moment, then continues thoughtfully. “Ya know, Mama, if everyone was willing to REALLY be who they are, there wouldn’t BE a such thing as nerdy or unpopular. And a lot more people would have real friends, cause they’d be showing each other who they actually are instead of who they want everybody to think they are.”

I sit back in my chair and try to take it all in. I am in awe of my kid.

“My dear,” I say, “that couldn’t be more true. Sadly, a lot of people are really invested in the image that they project. But if one by one, we start shedding the layers, maybe being yourself can become the cool thing to do.”

She giggles. Her attention is drawn to a table nearby, where two young women are apparently enjoying their sake a little more than their food. One of them has been LOUDLY regaling the other with the story of a date she’d recently had with a guy she’d met online. Katie has not hidden her annoyance.

“I DON’T KNOW,” the woman is all but yelling. “I’M JUST NOT IMPRESSED SO FAR, YA KNOW?”

Katie rolls her eyes, then whispers, “Mama, come here.”

We’re at a tiny table together, not two feet apart. “Um .. I am ‘here’, baby.”

She rolls her eyes again, then motions for me to lean in closer, so I do.

“I have an idea,” she whispers.

I tell her I’m all ears.

“How about if we start talking just as loud as them?”

I laugh, then sit back. She motions me in again.

“No, seriously, Mama. That would be kinda hilarious. Let’s do it. We’ll tell the story about the lady and the mustard seeds as loud as we can.”

I can’t stop grinning. “Baby,” I say, “I’m going to say something to you that my dad said to me when I was a kid, because nothing is more true right this very second.”

She interrupts. “Does this mean we can’t do the loud thing?”

I laugh. “Yes, it does. But I’ll admit, it would be utterly hilarious.”

She sticks out her bottom lip in a perfect pout. We both crack up.

I take her hand. “Baby girl, if eleven years ago someone had asked me to design the perfect kid, I could not have come close to creating you. Thankfully, it was out of my hands. Because God knew what to do far better than I ever could. YOU, my dear, with all of your glorious imperfections, are PERFECT.”

She looks down at the table, then back up at me. “Wow,” she says. “Really?”

I nod.

“BUT HOW WAS I SUPPOSED TO KNOW THAT WE WERE GOING TO GO OUT FOR DINNER? HE DIDN’T TELL ME, SO IT’S NOT MY FAULT THAT I ATE BEFORE WE LEFT, RIGHT? I MEAN, RIGHT?”

Katie leans in one last time.

“C’mon,” she says. “You know you want to.”

Nope, I could not have designed her better.

one more person

-

Over February break, Katie was begging to come into work with me. It just wasn’t feasible to bring her in for a full day, but we managed to come up with a compromise. Luau would bring both girls in for a visit toward the end of a day and then leave Katie with me to close up shop.

I was nervous about Brooke coming into the office, but hopeful that after her last experience it might be O.K. As it turned out, it was far better than O.K.

As soon as they walked in, Brooke made a bee-line for the white board. She immediately retrieved the markers from their storage spot and began to draw an elaborate rendering of the Teletubbies at the beach.

Luau and Katie had walked over to my colleagues and were saying their hellos. There were introductions that needed to be made, but I was going nowhere. I was torn between maintaing some semblance of manners and ensuring that my girl was comfortable in a tough setting. I decided that manners could wait and let Luau fend for himself.

Once the Teletubbies were all in their bathing suits, I decided it was time to push just a little. “Brooke, honey,” I said, “as soon as you’re done coloring that in, we’re going to walk around and say hello to Mama’s friends, OK?”

“I’m still drawing,” she said.

“Yes, baby, I see that,” I said. “But as soon as you’re done coloring that in, we’re going to say hello to Mama’s friends.”

“O.K.,” she said, never looking up from the board.

Eventually she finished coloring and I took her by the hand and walked her around the desk.

I introduced her first to a new colleague. He’s been with us less than a month and I realized as he began to talk a mile a minute that I had never told him that Brooke has autism. “Hey, kiddo. Nice to meet you,” he said with his hand outstretched. She handed him her forearm, which he bobbed up and down in an awkward approximation of a handshake. “You visiting Mama at the office today?” he asked. There wasn’t nearly enough time for her to process the question before he was on to the next. “You guys having a good vacation? Doing some fun stuff? What have you been up to? Hey, I like your shirt. I like tie dye too. Big fan.” She stood looking at him, but didn’t say a word. “Brooke, honey,” I said pointing at her shirt, “this pattern is called tie dye. Mr J likes tie dye. Do you?” She mumbled, “Yeah.” I prompted a ‘Nice to meet you,” and we moved on. I made a note to have a chat with Mr J the next day.

We moved on to the other side of the desk, where Mama sits. I introduced her to my closest neighbor, Mr K. Yes, the very Mr K who I asked just over a year ago to please consider removing the R word from his lexicon. The very Mr K who, at least in my presence, has. The very Mr K who had no prior interaction with anyone with autism. The very Mr K who has sat next to me now for over a year. The very Mr K whom I have grown to respect and really like, even if he finds me annoying and thinks I talk far too much.

Although he’s heard about her (ad nauseam, no doubt) he’d never met Brooke. Just like Mr J before him, he reached out a hand and got a forearm in return. He shook it with a gentle smile. He said that it was nice to meet her and she said. “It’s nice to meet you too.” It was short, sweet and charming.

We moved around the room repeating the scene. She needed a lot of prompting, but she hung in like a champ. Eventually she cried Uncle and asked to head back to the white board. I didn’t insist that we hit everyone. We’d pushed enough for one day.

After Luau and Brooke headed off, I sat down at my desk with Katie. I couldn’t stop smiling. My girls had BOTH come to my office. Brooke had, in her own way, enjoyed being there. And by God, she’d walked around and said hello to my colleagues. I could barely get my brain around how far we’d come.

“I’m really proud of her.”

The words weren’t mine.

I turned to Mr K. He had a huge grin on his face. “I mean, wow,” he said. “That really must have taken a lot for her to do, huh? I mean, this place can’t be easy for her, right?”

The tears stung my eyes. Oh God, crying at work is not an option.

“No,” I said, barely looking at him, “it’s not easy at all. But she rocked it.”

Katie nodded. “She did really well, Mama. That was awesome.”

I looked back at Mr K. He was still smiling.

I took to IM. I knew I couldn’t say what I wanted to say out loud. If I did, it would come with a waterfall.

“You made me cry damn it.”

Sorry.

“No! Not a bad thing.

Thank you.

It means the world to me that you would see that.”

One more person who gets it. One more person who slows himself down a little. One more person who no longer uses a word that wounds. One more in an ARMY OF PEOPLE who will – who ARE! – making the world just a little more understanding, just a little more forgiving, just a little more ACCESSIBLE to my girl.

One more person to whom I am grateful.

Stories matter.

Who will you tell your story to today?

support

*

In yesterday’s post, I made reference to an article that I read recently about a Sheriff in Cook County Illinois. The Sheriff, Tom Dart is threatening to sue state and local government officials. Why? Because, according to the article. “the county jail is so overwhelmed with people whose offenses are more attributable to mental health issues than criminal impulses that the facility has become a source of mental health care for the city, and he’s sick of it.”

Dart says that the system “is so screwed up that [he's] become the largest mental health provider in the state of Illinois.”

The article goes on to say that “of the 11,000 prisoners detained at Cook County Jail at any given time, Dart estimates that about 2,000 suffer from a serious form of mental illness. At an estimated cost of about $143 per detainee per day, the overflow from the nearby state-run Elgin Mental Health Center, which can handle only 582 patients at a time, stands to put an undue burden on the jail’s resources.”

ABC Chicago interviewed some of the many repeat offenders who spend time in Dart’s jail, several of whom described it as one of their only options for consistent access to mental health care and medication.

“What ends up happening is, there’s no safety net to catch them, so they end up committing crimes, getting swept up by the police and coming to jail,” jail psychiatrist Dr. Jonathan Howard told ABC.

Our nation is at a crossroad. Political rhetoric is as heated as I’ve ever seen it. “Smaller government!” The candidates scream to feverish applause. “Personal responsibility!” they intone to blood-thirsty crowds.

Santorum has laid out his plan for helping those in need in our society. It’s brilliant in its simplicity. It’s idiocy in practice.

“I’m not going to go out and lay out an agenda about how we’re going to transform people’s hearts. But I will talk about it,” he said. “One of the important things that the President of the United States can do is talk about things that the federal government shouldn’t do but talk about what a good society should do.

“If government is going to get smaller, then people have to get bigger. And that means they have to stretch out more, they have to do more things,” he said. “But how beautiful is that. How beautiful is that that you’re going to have to do more to help those in need in our society?”

Beautiful in its idealism? Yes. Able in any practical sense to keep Tom Dart from being Illinois’ largest mental health care provider? Not so much. Just ask the homeless lady huddled by the fence in front of the church.

When I began advocating politically, my girl was just a toddler. Our town’s education budget, like so many others around the country, was shrinking dramatically and tough decisions needed to made about where the limited monies would be allocated. The arguments that I made to our local officials revolved largely around the fact that providing appropriate support for kids like Brooke was simply The Right Thing To Do.

Within short order, I learned that school boards and government officials are not particularly swayed by The Right Thing To Do. So I started talking about money.

I told them that we had a choice – to spend some money now in order to enable a generation of kids to participate in and contribute (heaven knows what great things that lie beyond our limited imaginations) to our society OR pay exponentially more later when we have a generation of adults who are wholly reliant on us because we didn’t give them the skills they needed to be even partially self-sufficient when we had the chance. I wondered though, if that idea was simply too vague to really sink in and impact the political process.

Well, thanks to Sheriff Dart it’s not so vague anymore, is it?

The current crop of candidates is big on Bible thumping. And despite the fact that a host of religious leaders have come together to ask them to cut it out, I’m happy to engage in a little thumping of my own. Especially because the following parable from the Gospel of Matthew happens to be the basis for one of my baby girl’s favorite scenes in her beloved Godspell.

Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’

The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

Our kids need support. Many of them always will. And I am determined to ensure that that ‘support’ doesn’t come in the form of a ten-year old girl handing them a couple of dollars on the street.

So when arguments based on compassion seem to fall on deaf ears, or reminders of our sacred responsibility to care for one another (no matter what the level of need may be) as members of a civilized society go nowhere, and Bible thumpers tell us that individuals and churches will care for those in need, send them this  http://www.huffingtonpost.com/2012/02/21/cook-county-jail-a-mental_n_1291851.html as a reminder that one way or another, we WILL support those in need. And I can’t imagine that ANYONE thinks that our jails are the best place to do it.

-

the covenant

A ministering angel shall my sister be.

~ William Shakespeare

-

Wednesday, early evening

Katie and I are walking down Newbury Street, Boston’s somewhat provincial version of Fifth Avenue. As we pass the gorgeous old Church of the Covenant on the corner of Berkeley Street. Katie tugs at my arm. There is an elderly woman who appears to be homeless huddled by the church’s fence. She sits next to an overflowing shopping cart. Attached to the cart is a crude cardboard sign asking for money.

“Mama,” Katie asks, “can I?”

It’s the doe eyes that do me in.

I take a bill from my bag and hand it to her.

“Thank you, Mama!” she says with a grin. You’d think I’d handed her a puppy.

She walks over to the woman and gives her the bill. They share a moment as the older woman looks up at her, her weathered face breaking into the warmest smile I’ve ever seen. “God bless you, little one,” she says to my girl. “God bless you too,” Katie says in return. The moment passes slowly.

The old woman’s smile lingers as she watches Katie walk away. The long, deep wrinkles in her chocolate-brown skin curve and swirl, dancing from her mouth to her forehead. Her face tells a thousand stories. It has not been an easy road.

Katie takes my hand and we continue our walk. Or start to.

“Mama,” she asks, her voice nearly a whisper, “why do you think that woman was homeless? Like, how does that happen?”

My breath catches in my throat. I think of the article I’d read earlier in the day about a Sheriff in Cook County, Illinois who says that his jail has become the largest mental health provider in the state of Illinois. The one that shocked me, but didn’t.

I try to answer, but instead a tear rolls down my cheek.

“Mama! What is it? What happened? Why are you crying?” Katie asks in a confused panic.

I know I have to get the words out.

“Baby, I’m sorry,” I say. “It’s just .. well .. it’s hard. You see, when I see people like that woman – people from a different generation – well, it’s just ..”

I am fumbling. The words aren’t easy to find.

“It’s just that I think that a lot of the time they are people kinda like Brooke, baby. But back then they didn’t have the support that they needed to manage in the world. And well, they can’t really make it without that, ya know?”

I try to stop them, but the tears are now flowing along with the words. They don’t feel adequate, but I don’t want to say, “Because this is why moms and dads like me wake up breathless at two o’clock in the morning, honey.”

“It just scares me, baby,” I say.

Katie stops walking. She lets go of my hand and grabs both of my arms, squaring me to her. She looks right in my eyes as she says, “Mama, I will ALWAYS be there for her. I promise.”

It’s the doe eyes that do me in.

The dam opens and the tears fall in earnest.

“Oh, baby,” I say. “I never want you to feel like ..”

She cuts me off. “It’s OK, Mama. I promise.”

-

And so it was that on Wednesday, early in the evening in the middle of Newbury Street, in front of the Church of the Covenant, I stood hugging my girl with everything I had until both of us were ready to continue down the road.

following the script

The other day, my friend Mom-NOS told me that her son Bud had had a rough go at school. His team had reported that he was severely dysregulated and that he had said some very concerning things during the day that were completely out of character for him.

Bud and my Brooke are similar kids. No two of our little snowflakes are ever the same, but upon reading what she’d written, I had a hunch. I was wary about making an assumption, but the scenario sounded eerily familiar. So I told her my thoughts.

MOM-NOS,

I’m just going to throw this out there – please don’t feel like you have to respond; it’s just a thought.

Brooke is so reliant on scripts to communicate that very often the words that come out really don’t reflect reality – or at the very least reflect some skewed, often hyperbolic form of reality – but not remotely her intention. ie – when we got a call from school early in the year that they were concerned that she was seemingly having suicidal ideations when indeed she had said “You just want to see me flat on my back and kill myself’ which yes, many an autism mom would recognize from It’s The Great Pumpkin, Charlie Brown.

And, she tends to go into script-only mode when she’s not ‘present’.

Sooooo, not to minimize any of this IN THE LEAST – but perhaps to contextualize it a bit if it’s relevant.

Again, just thoughts based on my experience, so dismiss at will.

Love you.

Jess

She wrote back later to say that she’d had the same thought and that she was composing an e-mail to Bud’s team to let them know.

And, by God did she ever write an e-mail. And thankfully, because she is who she is, she was gracious enough to share with each and every one of us. And holy hell, my friends, this is something we ALL need to read.

If you have a child who uses scripts in any way, shape or form, you NEED to read this. If you have a kid who gets dysregulated by change, you NEED to read this. If you teach or come into contact in any way with children like mine, I IMPLORE you to read this.

Thank you, MOM-NOS – for sharing your insights about your utterly fabulous kid with us. He is a wonder, and he is incredibly lucky to have you as his mom.

http://momnos.blogspot.com/2012/02/spirited-away.html

warning – insufferable bragging in 3,2,1 …

-

Is there any chance you might be willing to indulge this Mama some unabashed bragging?

Some completely immodest pride in her eldest girl?

Pretty please?

If not, I completely understand. It’s annoying. I get it. Just move on and I’ll see you tomorrow. No harm; no foul.

But, you see, a friend sent me this photo yesterday. She is vacationing with her family in NYC and she and her girls took a trip to Bloomingdale’s. And while they were there, they saw an ad for Ralph Lauren Children. A really big ad. Like a poster. On the wall. In Bloomingdale’s. I know I already said that, but still.

And, well, it’s a picture of my kid.

And that makes me pretty damn proud.

But truthfully, that’s not really what I’m here to brag about. I mean it is, but not entirely.

See, as proud as I am that my kid is beautiful (yeah, I said it, sue me), what I’m most proud of is this …

Luau showed her the picture.

He was jumping out of his skin. He’s a proud papa, after all.

She looked up and said, “Cool.”

Then returned to what she was doing.

Because for her, It’s not about the pictures. Or where they end up.

It’s not about seeing herself.

Truthfully, she doesn’t really care much about that part.

For her, it’s all about the experience. The adventure. The trip. The time alone with Mama. The kinship with the other kids. The stylists. The photographers. The seamstresses. The crew. The puppies. (It’s Ralph Lauren; there’s always a puppy). The clothes. The accessories. The wranglers. The friends she gets to see again and again and the new ones she makes every. single. time.

It’s about being exactly who she is.

In any and every setting.

And who she is – according to her Mama – is absolutely beautiful.

From the inside out.

My girl

Ralph Lauren, Spring 2012

Ed note: for the back story on how on earth this happened, click HERE then HERE .

torn

-

The little bag was hiding inside one of the many containers in her room. As she lined her figurines up across the floor, I picked it up to inspect it more closely.

“Hmm, what’s this, Brooke?” I asked.

“I don’t know,” she said. She hadn’t looked up.

I brought the bag over and sat down next to her on the floor. I held it out where she could see it.

“These must have been a party favor, baby. They’re very cute.”

“They are?” she asked. She still hadn’t looked up.

“Yes, baby. They are,” I said. ”Can you look at them?”

I opened the bag. “They’re Hello Kitty. There are earrings and a necklace in here.”

Hello Kitty got her attention. “There are?” she asked.

“Yep,” I answered. “The earrings are for pierced ears though, honey. Should we give them to Katie?”

She stopped what she was doing and reached out to grab them.

“No,” she said. “You would pierce my ears into them.”

In so many ways I prayed this day – or what I thought it would represent – would come.

Now I have no idea what to do.

I want to go with my gut.

My gut says do it. Don’t sell her short. Ever.

My gut says absolutely, positively don’t do it – there’s no way she can fully understand it no less handle it.

What if she’s traumatized by the pain?

What if she tears them out as soon as we’re not watching her?

What if I deny her the chance to do something that she wants to do – something that little girls do as a matter of course – something that her sister did at age seven?

I want to listen to my gut.

But my gut is torn.

Why is every damn decision so fraught with – well, with autism?

I have no idea what to do.

I want to listen to my gut.

But my gut is torn.

when all else fails ..

Ed note: Thank you ALL so much for your love and support yesterday. The IEP meeting went very well. Now we await the official proposal and refinement process, but there were no surprises this time (thank God!) and we’ve got a wonderful team of people working together to support our girl. Knowing you were there with us made all the difference in the world.

-

In preparation for Brooke’s IEP planning meeting, we requested what’s called a Functional Behavior Assessment, or FBA. An FBA is essentially used to determine – or at least to TRY to determine – the purpose of a student’s behavior across various environments. Although it’s true that behavior is a means of communication for all of us, it’s particularly salient for those who have challenges with communicating in other ways (ie verbally).

So, when a kid like mine screams in the middle of the classroom, the question is – or should be – what is she trying to tell us? The next question is – or should be – what tools can we give her to communicate that more effectively and far less disruptively?

But before we can do that, we have to figure out why she is screaming.

So we asked for an FBA, and the team readily agreed that it would be a very useful tool, especially given that we were making a number of pretty serious changes to her service delivery at the time (a story for another day).

The FBA is seventeen pages long. It contains a bunch of necessary jargon and a whole lot of data. It is written somewhat formally and sounds like your typical evaluation report. There’s lots of talk about things like MASs (Motivation Assessment Scales) and ABCs (Antecedents, Behaviors and Consequences.)

Overall, reading the FBA was dry and sort of depressing. Poring over the data about incidences of ‘Non-Compliance, Protests and Self Injurious Behaviors was well, not fun. So the last thing I expected to do while reading it was to laugh so hard that I snorted.

But, well, it turned out to be pretty damned funny. I mean, maybe it’s just me, but I thought the following line from the Classroom Observation section was nothing short of hilarious. Not to mention genius. And I’m thinking I may just employ this strategy next time a meeting is going nowhere good. Just sayin’.

In an attempt to escape the demand to continue writing her paragraph, Brooke complained, then pretended to fall off her chair.

To paraphrase my awesome friend Stimey, if we could help our kids harness the creative power and ingenuity that they so successfully use to avoid tasks and manipulate everyone around them, they could rule the world.

Amen, Stimey, And just imagine a world ruled by that kind of creative genius.

I’m in.

*

I am honored to be nominated for a Sensory Processing Disorder Bloggers Network (SPDBN) Award! The site is fabulous. If you’re not familiar with them, click on over and check ‘em out. And be sure to click -> HERE <- to read some wonderful posts (and then, well, vote for mine! )

iep day

-

Today is the day.

Today we sit down – as a team – to talk about our baby girl.

Today the team will, by necessity be largely focused on what she can’t do.

Today, we will continue to remind them what she can do.

Today we will set about establishing goals for the next twelve months – for a full year’s worth of academics, communication, motor skills, social skills, sensory regulation, self-care.

Today we will break each of those down into its ten thousand parts, then rebuild it in an order that we think might be accessible when presented to our girl.

Today we will remind them, this isn’t about the ten thousand parts.

This is about our girl.

Today, words and phrases will fly around the room as we talk about what we see as – what we believe is – possible. Because we have to believe – as a team – that everything is possible.

... keep pace with her peers academically – decoding and comprehending grade level reading assignments …

… understanding and utilizing grade-level math concepts with both fluency and fluidity, creating a solid foundation for later learning …

… understanding and being able to participate in discussions of science and social studies concepts …

… continue to decrease dependence on adults by increasing her ability to use peers for modeling … … participate in age-appropriate recess games and activities including but not limited to …

… greatly increase her access to the language necessary to participate more fully in every aspect of her life, but especially the social interactions with her peers that she so obviously enjoys, desires and …

… participate comfortably and naturalistically in social settings, finding and fostering one or more real friendships among her peers …

… an increase in joint attention among peers and adults …

… an increase in her understanding of abstract ideas / topics …

… sensory regulation and awareness of tools that she can utilize to promote it throughout her day …

We will listen. We will contribute our thoughts and help to flesh out each and every one of them.

We will talk about service delivery and homework, time out of the classroom and time back in. We will talk about the practical application math program, the individualized reading curriculum, the fact that in actuality, grade-level remains a far off goal in both.

We will talk about scaffolding and visual cues, think time, prompts, social thinking, decoding, frequency, fluency, behaviors, data, comprehension, anxiety, scripting, self-regulation, phonological awareness, communication strips, social stories, heavy work, verbal frameworks, systematic teaching of play schemas, facilitation, expressive language, receptive language, evaluations, ABA, pencil grips, lap pads, shoe tying, swinging, technology, fidgets, wonder bubbles, brain in group, inferencing, predicting, concluding, telling time, identifying money, bilateral coordination, peers, placement, progress, support.

I will, at some point, cry.

And before we leave, we will reiterate our vision statement. The one that we, as parents, put into the IEP every year. The one that says,

“Above all, we want to see her broaden her arsenal of tools, skills and strategies and use them to be a happy, social and confident child who enjoys life and all of its experiences.”

Because really, isn’t that the point?

Today is the day.

Deep breath.

spiky

-

I bumped into an old friend at the Autism Speaks event on Saturday night. She asked how the girls were doing. I told her about Katie getting ready to transition to middle school (Good Lord, when did that happen?) and heading off to sleep away camp for the first time this summer. But then I was stuck. I had no idea what to say about Brooke.

“She’s doing wonderfully!” would be crap. The med change disaster is still dragging on. Her anxiety is – in some situations – at all time highs. We can’t cook anything on the stove in our house when she’s home. Dinners are baked, boiled (as water makes steam, not smoke) or grilled – as in outside in the middle of winter in New England. Good times.

Yet, “She’s having a rough time,” leaves out all of the good stuff. And there’s been lots of good stuff. The quantum leaps forward in communication, emotional identification, connection. What about those? What about all the questions she’s been asking at the dinner table or the actual conversational volleys she’s been attempting with her sister? What about the pretend play with her beloved American Girl dolls?

And so I answered, “Spiky.”

It was a funny word, but it felt like the only one that was real.

“The lows are tough,” I said, “but the highs are pretty incredible.”

*

Yesterday morning, a little girl who was in Brooke’s class last year – not this year, last year – came to find her. She had something she wanted to give her.

 

 

I melted when I saw it. There are kids out there who are seeing my girl. Who are truly getting how utterly fabulous she is. Who are going out of their way to tell her that.

After dinner (hamburgers cooked outside on the barbecue), we went through her envelope of Valentines. Third grade is the last year in which the kids all bring them for the whole class, so I knew the envelope would be full, and it was.

We looked together through the cards and set aside the little trinkets that came with many of them. Soon we had piles of Valentine pencils and temporary heart tattoos. Brooke read the names on the cards and even added an enthusiastic, “I love it!” after opening a couple that struck her fancy.

One of the last ones she opened didn’t hold a pencil or a tattoo. In fact, it contained nothing store-bought at all. It was handmade –  drawn in careful crayon on simple white paper. And what it delivered was far better than any trinket.

If I thought the teddy bear had done me in, I had no idea what was coming next.

Front

Middle

(Ed note: I hope you’ll forgive my extremely clumsy photo editing. I had to take out real names but had no idea how to put pseudonyms back in and my IT guy is fast asleep.)

*

Yup, the answer I’ve got is spiky. The lows are low, but I’ll be damned if the highs ain’t pretty amazing.