all you need to know

 

***

I wonder ~

Do you know that I sneak into your room to watch you sleep, secretly hoping that you might wake up, even for a second?

When you do wake up and I’m not here, do you wonder where I am?

Do you understand why Mama has to go to work, baby?

Do you know that it kills me to leave?

Do you know that my heart breaks every single time I get into the car and drive away?

Do you know that I think of you every moment of every day?

Do you know how desperately I want to restructure your world – to make it less hostile, less foreign?

Do you know how hard I try to make things easier for you?

Do you know that I would give my right arm to take away your fears?

Do you know that I carry your worries with me? That I flinch when a baby cries even when you’re not in the room? That I wish that somehow that helped?

Do you know that there is nothing, NOTHING that I wouldn’t do to ensure your safety and happiness?

Do you know that it cuts me to the core when you say, Don’t touch me! even as I burst with pride that you finally have the words to say it?

Do you know how grateful I am for those hit-and-run hugs that come at me with all the force of the universe, even if they end just as abruptly as they start?

Do you know that your laughter has the power to heal?

Do you have any idea how much you’ve changed me?

Or how grateful I am to have been changed?

Do you know how many people are rooting for you? How many people cheer your victories and hold you in their hearts when you stumble?

Do you know that you are smart as a whip?

Do you know that you have autism?

Does that strange word that we use mean anything to you?

Does it help to know that there’s a name for the things that you struggle with? That you are not alone in those struggles?

Do you know that as you grow up there will be an army of people out there with similar experiences?

Will you want to find them?

Will you take comfort in their friendship?

Will you find pride in being different or will you choose to try to blend in?

Or both?

Do you know that as long as you can make that decision for yourself, I will feel as though Daddy and I succeeded?

Do you know that I envy you your complete lack of pretense?

Do you know that you are the most authentic person I’ve ever met?

Do you know that you make the world better, simply by being who you are?

Do you know that you touch hearts and change minds and bring everyone around you to a higher place?

Do you know that I have already learned far more from you than I will ever teach you?

Do you know how proud I am to be your Mama?

***

I love you, baby – with every fiber of my being.

Don’t worry about the rest of it.

That’s all you need to know.

just start

*

“Take the first step in faith. You don’t have to see the whole staircase; just take the first step.”

~ Martin Luther King Jr

*

In our first official act, the Inclusion Committee has established a column in our school’s newsletter. OK, so I carved it out of the Parent’s Advisory Council Liaison’s column. Which wasn’t that hard to do because I’m the Parents Advisory Council Liaison and it was my column. But stay with me, folks. I’m building to something here.

Have you heard about the Inclusion Committee?

30 members strong and growing, the Inclusion Committee is a wonderful and dynamic mix of parents, teachers and staff members. The committee works to raise awareness about what it means to be an inclusive community and how each of us can play a role in fostering an environment of tolerance, compassion and understanding for all.

We are already working on the planning for our school-wide celebration of Inclusive Schools Week in December. Volunteers are welcome! Contact Jess Wilson at (my e-mail) for more details.

On the day that we started this thing, I was chatting back and forth with my friend (and first official volunteer!), Deb via e-mail. During that exchange, she wrote something to me that simply begged to be shared. It was an emotional plea, a call to action and an instruction manual all in one. It started with the words, ‘Here’s what I want to say to parents”.

And it sparked an idea.

Your submissions wanted!!!

We are thrilled to announce a new format for our little space here in the Newsletter. We want to hear from you! We will be highlighting submissions from the entire school community that answer one of two questions:  

What does inclusion mean to you?

OR

What would you like your community to know?

We are seeking submissions from parents, students, teachers and staff. By definition, inclusion INCLUDES all of us!!

Please send your submissions via e-mail to (my e-mail) with ‘newsletter’ in the subject line. Due to limited space, some submissions may not be published, but please don’t be discouraged. We will do our best!

And now, without further adieu .. our first submission comes from a parent of three (of our school’s) students and answers the question What would you like your community to know? 

***

Think back to when you were in elementary school. Everyone can remember that one kid … the awkward one … the one who may have talked differently, or looked different, or had unusual habits. And everyone can remember at least one time either watching or even participating in a moment of unkindness, or excluding, or giggling, or just avoidance.

None of us could know then what a parent’s love for a child felt like. Imagine how the parents of that child from elementary school felt seeing their baby being treated poorly by peers. Think of the pain and isolation of not only the child, but of the parents as well – neighbors, even friends.

Well there are many more kids with “differences” now. There is NO ONE whose child is not affected. If you are not the parent of a child with “differences” you are absolutely the parent of a child who has classmates with “differences”.  The teachers can not be role models of compassion in a vacuum.  Fear of differences is powerful.

If an invitation to a birthday party or a play date feels too big … start with a simple conversation. Start with asking your child to give someone outside of their circle of friends a turn in their game, extend a compliment, a gesture or even a smile.

Just start.

I told you it begged to be shared.

 

so dumb

“Stupid is a SAD word. Dumb is kinda like saying STUPID.”

~ Kendall Wilson

***

Darby had asked me to come into her room “to talk for just a moment, Mama”. A moment quickly gave way to an hour. Little Miss didn’t need to talk, she needed to TALK.

***

“Like when I have play dates over who don’t really know maybe, and they look at Kendall with that ’she’s so WEIRD’ look. You know that look, Mama? The ‘why is she so WEIRD’ look? Or like when neighborhood girl was over and she said, ‘You know how your sister is so dumb?’”

Stay calm.

Breathe.

Don’t let her see it.

“You didn’t tell me about this, honey. What did she say exactly?”

“Well, we were playing and she just said, ‘You know how your sister is so dumb?”

Damn it, I was so hoping I’d misheard. I was praying she was going to say, “You know how your sister pits her plumb? … hits her drum? … sucks her thumb?” Anything but that. Damn. Damn. Damn.

Stay calm.

Breathe.

“So what did you say, love?”

“I told her that she’s NOT dumb at all. That she’s actually really, really smart and that if she said stuff like that ever again she couldn’t be my friend.”

We talked for a long, long time. I gave her some words that she might be able to use next time. My sister’s brain works differently than yours and mine, but that doesn’t mean she’s not smart. It just means that some things can be more challenging for her. We spent a lot of time detailing Kendall’s challenges and talking about the strengths that are actually wrapped inside each and every one of them. She started repeating them back to me.

“Ooh, like how she can repeat anything just like she heard it – what’s that word for it, Mama?”

“Echolalia, baby.”

“Right, echolalia. It may seem like it’s not good now, but when she speaks Spanish like Dora it sounds just like someone who grew up speaking Spanish instead of like us which sounds like, well, you know, someone who is just trying to speak Spanish.”

“Exactly, love. Exactly.”

And I tried to drive home the fact that she didn’t have to have those kinds of conversations alone. I told her that Daddy and I would always be there to help.

“But, Mama”, she said. “I DO have to handle it alone. I mean, maybe I don’t really, but I’m just telling you, that’s what it FEELS like.”

“Oh, honey, I know,” I said, struggling to keep my voice even. She’s the one reporting back from the front lines. We’re just sitting safely inside HQ drinking coffee and talking strategy. What the hell do we know? “I know it feels like you have to do an awful lot by yourself. I understand completely why you feel that way. But please, please know that you have a lot of people who can help.”

I ran through a list of people at school. The social worker that she adores, her teacher, the inclusion facilitator – the wide and caring and wonderful network of people who can HELP. And I came back again to me and Matt.

Matt and I talked that night and into the next morning. We agreed that we needed to talk with neighborhood girl’s mom. It then took us three e-mails, two phone messages, two outside consultations and five actual conversations before we decided how we wanted to handle it. “I need to ask your help” is the approach we decided on. “I’m sure you can imagine how hurtful those words would have been to Kendall had she heard them and how hard they were for Darby to hear. We’re sure she didn’t mean to be hurtful, but children can say some difficult things when they don’t fully understand a situation.”

It took a night’s sleep and lot of restraint to get to that point. “I need your help” was NOT our first reaction. “I’m sure she didn’t mean to be hurtful” sure as hell wasn’t mine.

The next morning, Darby hung out with me while I showered, as she so often does. “Hey, Darb,” I said, trying to sound casual. “I talked to Daddy last night and we both feel that its important for us to have a conversation with neighbor girl’s mom, OK?”

She nodded and said, “Yeah, I understand.”

I called the school social worker first thing in the morning. She was wonderful. “I’ll pop in and give her my schedule so she’ll always know where she can find me,” she said. She promised to make it seem like something she had already been planning to do as a matter of course.

I tried to push it out of my mind for a while.

I worked on the notes from our first inclusion committee meeting. I looked at the words on the screen that described the meeting for those who hadn’t been able to come.

We each talked a bit about what inclusion means to us – from honoring and respecting every individual’s contribution to the community to celebrating one another’s unique strengths and making the effort to look beyond the surface and to really get to know one another and understand each other’s stories. We talked about learning from one another, creating an environment in which every member of the community feels welcomed and empowered. It was a thought-provoking exchange and hopefully the first of many.

I organized some of the ideas that had come from our brainstorming session. I looked them over with a new sense of urgency. This stuff matters. It will make a difference. It has to.

I was grateful that we had already designated Sunday Darby Day – the yearly celebration of all things Darby. Not her birthday, not a holiday, simply Darby Day. The one day a year upon which the entire Wilson clan is subject to the whim and wish of little Miss Darby Delicious. She’d been tweaking the schedule all week long ahead of the big day.

~ Wake-up when I get up. Even if it’s before 6:45, I can go in to your room, and you can’t say it’s too early cause it’s DARBY DAY!

~ Cuddle time – with no books and no shows – just CUDDLES!

~ Breakfast – decorate-your-own-pancake bar (NOT THE FROZEN PANCAKES, Mama – HOME MADE ‘REAL’ PANCAKES with icing and chocolate chips and pink sugar and you can’t say that’s gross and no way can I have that stuff for breakfast cause it’s DARBY DAY!

And on it went …

And thank God for all of it. For things to DO, a difference to make, the things to look forward to – and for knowing that we would soon be celebrating Darby in all her Darbiest glory.

Because otherwise I might have drowned in the thought that it took two adults – two adults who are steeped in sensitivity, two adults with a pretty decent grasp of human interaction, two adults with a lifetime of experience  -  three e-mails, two phone messages, two outside consultations, and five actual conversations to figure out how to handle what my 8 1/2 year old deals with on the fly EVERY SINGLE day.

These kids are carrying

an

awful

lot

of

weight.

when?

“Meeeeee I have another muffin please?”

“Sweetie, you asked very nicely, but we’re only having one each. If you want one later, you can have it after dinner, OK? First dinner and then muffin.”

“But I really want one.” (Kendall’s new and almost irresistible attempt to get anything and everything that she wants)

“I know, baby, but we’re going to have dinner very soon, so we’re not having any more muffins right now. You can have another one AFTER dinner. First dinner and then muffin.”

I was ready to press rewind and replay the whole conversation. It’s what we do around these parts when there are a lot of words flying around. But Kendall’s next question – just a single word – kept us right on course.

“When?”

HUH?

STOP THE PRESSES!

Do we have sound effects around here? I’d like to insert [song comes to a screeching halt as needle scratches across record].

“When?” Did she just say, “When?”

Matt and I exchanged a look. The Holy crap, did she really just say that? look. Oh yeah, she did.

Mark your calendars, my friends. This was the last of the coveted ‘W’ questions to enter Kendall’s vocabulary.

She is 6 1/2.

Any idea how much will power it took not to give her a damn mini-muffin?

Ed note – this post has been gathering dust for nearly three weeks now. We have yet to hear ‘when’ again since that day, but don’t you worry. We will. Ooh, maybe I just need to break out the mini-muffins!

buttoned up

*

*

“Let me tell you the secret that has led me to my goal: my strength lies solely in my tenacity”

~ Louis Pasteur

Buttoning, I think I mentioned recently, is a new, hard won skill. But like all new skills in our world, it’s not consistently available. It plays hide and seek and dissapears just when you need it most.

But once in a while, it’s in the void that we find greatness. It’s the times that ease is farthest from us that we find out who we are. And sometimes, something as simple as a button can help us define our character.

Kendall’s Hello Kitty pajamas have just three buttons down their front. They are oversized pink plastic numbers, just as you’d expect to find on children’s pj’s – made to enable the young wearer to button them fairly easily by themselves. Well, most young wearers of course.

Kendall took the pajamas from my hands. She laid the pants out on the floor, sat down in front of them, and pulled them up. As soon as she couldn’t pull anymore she stood back up to get them over her little bottom. She then tried to put the shirt on over her head, but it wan’t going to make it. She cried out as her head got momentarily stuck in the too-small hole.

I reached out to help, then pulled my hand back as I saw that she had found her way out. She managed to get the shirt off and she laid it out on the ground just as she had done with the pants. I watched her meticulously unbutton each of the three buttons, then pull the top on like a jacket. Without fanfare, she went to work on the bottom button.

She was tired and easily frustrated. It was right before bed, for goodness sake – the worst possible time to be working on something challenging. She began to cry. “Kenz,” I said as gently as I could. “Can Mama help you, honey?”

I didn’t want her to feel defeated. It was late at night. It wasn’t the time to be a hero.

She looked right at me (yup, right at me) and with all the conviction in the world she said, “NO.”

She twisted and turned that damned button. She yelled out in frustration.She pushed and pulled and contorted her little fingers until she got it halfway through the hole. And then the sucker slipped right out. She yelled out again.

The tears streamed down her face. “Honey, I know you want to do this yourself, but maybe we should try it tomorrow when it’s not so late,” I said, feeling completely impotent.

She cried harder, but didn’t make a move.

“Kendall,” Darby said softly. “Do you want us to stop looking at you?”

I hadn’t even thought of it. We were simply adding to the pressure, staring at her, looking for all intents and purposes like we might pounce at any time.

“Yeah, Darby. You would,” she answered.

We turned our bodies to make it clear that we were no longer watching her. And I did my best to conceal my furtive peeks.

Kendall turned herself around and faced the wall as she began to work again. I did my best to pretend to be engrossed in conversation with Darby. “Oh, yes, love, that sounds wonderful. I’m sure you’re going to love the trip to the arboretum.”

Once in a while I offered quiet praise. “I’m proud of you, honey. You’re doing so well.” She didn’t respond. I didn’t ask her to.

Nearly twenty minutes. It took my girl TWENTY GOD DAMNED MINUTES to button her PJs. And she stuck with it. For TWENTY MINUTES. She worked through her frustration and her tears and SHE DID IT. She would not give up.

I’ll never forget sitting across from our beloved neuropsych, Dr. I’dfollowthismantotheendsoftheearth about a year and a half ago. He was making an impassioned argument for addressing Kendall’s anxiety. We had been holding out, trying to avoid medication, exhausting every other option first. Part of the reason we were attracted to the doctor in the first place is that he’s not a guy who is big on meds. Unlike many other doctors that we encountered along the way, he doesn’t view himself as a giant Pez dispenser, indiscriminately handing out psycho pharmaceuticals like candy. Ask me sometime about the developmental pediatrician who once told me in a six minute phone call that she’d happily write a scrip for my daughter, whom she’d never met. She’d just like me to stop by with her for ten minutes or so just so she could see her first. It was the first and last time I ever spoke to the woman. But that’s just not Dr I’dfollowthismantotheendsoftheearth’s MO – so when he brought it up, we listened.

He made the very convincing case that the risks of letting Kendall’s anxiety run unchecked were far greater than the risks of the miniscule dose of medication that we would ultimately decide to give her. He actually said that he’d never felt more strongly about it with any child he’d seen to date. This ain’t his first rodeo. He’s seen a LOT of other children. He talked that day about the ‘hump of frustration.’ In order to learn anything new, he explained, we all have to push our way up and over the learning curve. And there’s stress involved in doing so. To take on anything new, one has to be able to make it through their frustration. At that time, Kendall wasn’t learning a whole lot of anything. She was screaming. And crying. And getting stuck over and over and over again in the vortex of her own anxiety.

I still worry about the medication. I think about the risks every single day. But – they gave her the ability to push her way over the first hump. And then another. And another. And along the way, she’s been able to pick up a whole lot of tools that had been previously out of reach. She’s learned how to calm herself down. She’s learned to ask for what she needs – breaks, walks, headphones, hugs. Once she began to understand that frustration was surmountable, there was nothing she couldn’t do.

Like buttoning herself into her PJs. All by herself, thank you very much. And the result – the pure, unmitigated joyful pride on that little tear and snot streaked face – was worth every bit of angst it took to get there.

You know, so often I feel like we project our own tenacity onto Kendall. Defiance, my friend M likes to call it. As in, ‘this kid defies any and all limitations.’ And she does. But she doesn’t always own it. Accomplishing a goal someone else sets just doesn’t have the same ring to it.

But as she stood there beaming in her buttoned up jammies, it couldn’t have been more clear – this one was ALL Kendall.

Ed note – many of you who wrote to me offline in response to this post suggested that we should be upping Kendall’s dosage. But, just as we did when we made the decision to medicate in the first place, we are exhausting other options first. After a long conversation with her developmental pediatrician, I feel very comfortable with our decision to hold off. I shared the same thoughts to her that I’d written into the post’s comments the night before -

after hearing from so many of (my friends) (both online and off) that (their) little (and not so little) ones are struggling right now too, i’ve come to believe that the time of year has an awful lot to do with the added stress on their already taxed systems.

the rapidly changing seasons, the screwy weather (at least here in the northeast where we’ve vacillated between 38 degrees and snow and 68 and sun all within 24 hours), the dramatically shorter days and far less time out of doors to get the jigglies out are conspiring to make life tougher for our kids.

add to that the fact that expectations are ramping up dramatically at school right now – the early days of getting to know classroom routines and reviewing old material are quickly giving way to getting down to business.

it’s not easy on kids who thrive on routine and who need to know what to expect.

She not only confirmed my reasoning, but told me that nearly every child she follows is having a tough time of it right now. She said the changes of season are always harder for our kids (we knew that, didn’t we?) and that anticipation of the holidays likely isn’t helping either.

“So, what do you want to do?” she asked.

I told her what we had done the night before. We had gone to a ball field after dinner. We played imaginary baseball and ran the bases. We played tag and we chased each other in and out of the dugout. We ran until the last of the light finally disappeared. And as I watched Kendall, I welled up with emotion. It was suddenly so obvious, watching her run. She’s fast, that kid. She has this funny little upright trot and her hair trails behind, looking like its trying to catch up with her. She was smiling. From ear to ear she smiled as her face cut through the wind. I said to Matt,”She’s FREE.”

It was good for ALL of us.

We are now on a mission to make up for the exercise she’s lost to the waning daylight hours. Yesterday at school her aide worked with the OT and they came up with a slew of exercises and activities for her. They ran outside twice yesterday. They took a break in the fitness room. They jumped over a balance beam and designed a stretch against the wall. It’s helping. A LOT. Her aide reported a great day.

And Mama’s breathing again.

excuse me – the heathen version

Ed Note ~ If you’re easily offended, this may not be the post for you. If you think it best, I promise not to hold it against you if you simply click somewhere else and come on back tomorrow. But if you decide to keep reading, you can’t say I didn’t warn you.

And the Lord said unto Adam,

Adam, quick, pull my finger!

*

On Friday night I had come straight from work to meet Matt and the girls at our usual Friday evening haunt. Since we had both of our cars, we had to drive home separately after dinner. Matt took my car and I took his so that I could stay with the girls. Once I see them on Friday after work, I’m rarely willing to relinquish them again.

And so it was that Darby, Kendall and I were making our way to Matt’s car to head home. We held hands and the girls chattered as we walked down the sidewalk. Two completely different conversations overlapped in the somewhat maddening stereo effect that is the hallmark of life with the Wilsons.

I’ve color coded the speakers in an attempt to allow you to follow who is speaking at any given time. Not that I can always follow who is speaking at any given time and I’m there, but hey, good luck.

***

The players ..  

Darby – talking about her upcoming field trip

Kendall – running through her script of Godspell inspired questions

Mama – whose sense of humor hits a new low

****

So, Mama, guess where our field trip is going to be? C’mon guess! It’s the best place EVER!

Oh, I um .. hmm, Darb, I’m not sure, honey.

What did Jesus say BEFORE He bumped His head?

Huh, What’s that Kenz? Oh, um .. he said ‘STROKE!’

OK, So it starts with ‘A’ but that’s ALL I’m telling you, Mama. Can you guess?

Oh, I, er, um .. hmm, Darb, let me think.

What did Jesus say AFTER He bumped His head?

 What, Kenz? Oh, he said, “Ow!”

C’mon, Mama! Guess!

OK, Darb .. the Aquarium!

What did Jesus have on His head?

A heart, honey. Jesus had a heart on his head.

Nope, try again, Mama. Good guess though.

Damn, thought I had it. Ummmmm .. the Apple store?

Shuddup. You try and come up with a field trip place starting with ‘A’ that’s not aquarium. Yeah, not so easy now is it, tough guy?

What rhymes with Jesus?

I opened the car door and the girls climbed in. Kendall went in first and settled in, still running through her prescribed litany of Godspell questions.

What rhymes with Jesus?

Darby followed her.

So, Mama, it’s a place you know. And you love it there. Starts with ‘A’.

Yeah, Darb, so you mentioned.

What rhymes with Jesus?

Kenz, we need to take a break for just a sec, OK? I have to close the door, honey.

I checked for fingers and toes and then closed the rear door and stepped to the front. As I got into the car I .. hmm, how shall I put this? I – oh gosh, this is terribly embarrassing. Mom, I’m sorry, but if I leave this part out there’s really not much to the story. OK, fine .. I passed gas, OK? It happens, people. Don’t judge. I’ve been eating a lot of vegetables. Anyway, it was kinda well, loud and really, really, really embarrassing. But being the mature and graceful role model that I am, I handled it in exemplary fashion. Or not.

I erupted into a fit of uncontrollable laughter.

Kendall was unfazed. What rhymes with Jesus?

Cheezus, Kenz. Cheezus rhymes with Jesus.

Darby looked at her sister and then at me, trying to determine the source of the um, interruption.

Mama, who did that?

What did Jesus bump when He fell down?

I tried to bite my tongue, I swear I did, but it just came out. I was laughing hysterically. Jeneil, I’m so, so sorry for what follows. Brandon, please forgive me. Pastor Karla, I do hope you’ll still come over for dinner after this …

 Jesus, honey. I think it was Jesus.

I was laughing so hard I could barely breathe.

Um, Mama? Jesus isn’t here.

What did Jesus bump when He fell down?

I giggled uncontrollably. Oh, honey, Jesus is ALWAYS with us. You know that.

And then I snorted.

What did Jesus bump when He fell down?

Jesus bumped His HEAD, Kenz. Fine, Mama. Yeah, I get that, but He’s not HERE as in HERE in the car FARTING. Nice try. So, um, what do you say?

What did Jesus say AFTER He bumped His head?

At the EXACT same the same time, Darby and I answered Kendall.

“Excuse me!’ Jesus said, ‘Excuse me!”

And then we rode the waves of laughter all the way home.

back

“Worry is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained.”

~ Arthur Somers Roche

I have something of a publisher’s block this morning. It’s not writer’s block. No, I’ve got plenty to write. In fact, I have plenty that I’ve already written. There’s the farting Jesus story (oh yeah, that’s a doozy), there’s the post about Kendall using the last of the missing “W” words (hooray!), and then there’s the one about a small victory that wasn’t so small (in which my girl WILL. NOT. GIVE. UP.) But I just can’t bring myself to publish any of them.

You see, my baby’s struggling this week. Really struggling. And I don’t know why. I can’t fix it or even help her fix it.

And so, really – funny stories, celebrations of words and small, not small victory dances feel awfully out of place.

Like Pigpen in a cloud of dust, Kendall has been walking around in a bubble of raw, smoldering anxiety. At the slightest provocation, the door opens on the past. Gone is the little girl with so many tools and so much language, replaced – at least for a brief moment – by the one with no words. The one with overwhelming fears that reduced her to a living breathing mechanism of self-preservation.

The moment Matt or I step near the stove she starts. ‘No noises. No noises. Dad, no noises. Mom, no noises.” A couple of days ago, I warned her that I was going to turn it on. The gas makes a crackling noise as it starts up, but it abates quickly. Her real fear is of the vent, which I assured her I would NOT use. I told her three times I would NOT turn on the vent. She was apparently not convinced. In tears, she grabbed both of my hands and physically PULLED me away from the stove.

Walking into her room she yells back down the stairs, ‘NO butterfly birds.” She waits for reassurance that indeed, there are no butterfly birds in the house. I dont have the slightest idea what a butterfly bird is. A moth maybe? I just know that my girl needs to know (and needs to be told again and again and again) – that there aren’t any in her room.

“No noises at school,” she says all weekend long, every weekend. “There won’t be ANY noises at school.” She is terrorized by the possibility of another fire drill at school. We have plans in place. They’ll warn her, get her out of the building before it begins. But I can’t promise her that there will never be a fire ‘drill’ at school. What if there’s a fire?

“Cookie Monster isn’t here anymore,” she told me yesterday.

“No, honey, Cookie Monster went away a LONG time ago.”

Kendall was three when we did away with the devil spawn talking Cookie Monster doll. She was terrified of the damn thing so we had hidden it away in the far reaches of an upstairs guest room. One day, Darby meandered up there and found it. She began playing with it and made it talk. Kendall heard it and lost it.

All she knew was that she had heard Cookie Monster’s voice come out of the room her sister was in. For the next forty eight hours – two DAYS – she was scared to death of her sister. She could not be in the same room with Darby without shaking and crying. And so, with much fanfare to assure that Kendall knew he was gone, we sent Cookie Monster away to the great Sesame Street in the sky.

“Cookie Monster is all gone. My dad made him go away,” she said yesterday. THREE YEARS LATER.

“Yes baby, he did. Cookie Monster’s gone; I promise.”

“He’s not here anymore.”

No, honey. He’s not here anymore.”

The old self soothing behaviors are back. The crying, the shrieking, the sensory seeking scratching, the picking at her skin, the scripting in force.

Three of the past four nights, she’s cried at bedtime. Just cried. I’ve laid down beside her in the dark, as I always do. I’ve asked “Baby, why are you crying?” and in so doing have taken the first step back into the labyrinth where we used to live.

“Because I cried.”

“Sometimes when I cry, it’s because something hurts me. Does something hurt you, honey?”

“No.”

“Is something scaring you, love?”

“No.”

“Kenz, what can I do for you? How can Mama make it better?” The old questions, the old insecurities. My life as Encyclopedia Brown – always looking for clues to unlock the mysteries.

“You can hug me.”

And I do. For as long as she’ll let me.

So maybe tomorrow I’ll hit publish on the funny. Or on the new word. Or maybe the small victory that wasn’t so small.

But not today.

For today, Mama’s just trying to make it better.

tipping the scales

*

*

I’m at Hopeful Parents today.

Come on over and drop me a line, would ya?

Please?

I stayed up waaaaaay past my bedtime on a FRIDAY NIGHT writing it.

So I guess I can’t promise no typos. It could be a bit of a mess actually. But heck, I never promised you no typos did I? You know those little notes I write sometimes that say ED NOTE .. ? You do know I don’t actually HAVE an editor right? You know that’s just me, right?

Oy.

Let’s end this before it gets worse, shall we?

Click here!

a living eulogy

*

“Michael O’Sullivan was my great friend. But I don’t ever remembering telling him that. The words that are spoken at a funeral are spoken too late for the man who is dead. What a wonderful thing it would be to visit your own funeral. To sit at the front and hear what was said, maybe say a few things yourself.

Michael and I grew old together. But at times, when we laughed, we grew young. If he was here now, if he could hear what I say, I’d congratulate him on being a great man, and thank him for being a friend.”

- Jackie O’Shea in waking Ned Devine

*

I was talking  to a friend of mine yesterday. Sadly, his mother-in-law had passed away last week and he was telling me about how moved he was by the funeral. They had played a slide show of pictures set to music and the last of the songs had been Natalie Merchant’s Beloved Wife. He was so touched by it that he sent me a link to the lyrics. I didn’t have to read them; I know them by heart.

The song is achingly beautiful. I used to listen to it over and over and over again on my Discman. Yes, Discman. If you’re too young to know what that is, go ask your mom and come back. I’ll wait. And I remember thinking that it would be pretty amazing to leave this world knowing that you were loved like that. So I said that to my friend. That as heartbreaking as it must have been, his mother-in-law was a lucky woman to have had that kind of love in her life.

He agreed and added that it was nice to see the outpouring of love at her funeral. “It was a big crowd,” he said. “She would have loved her funeral.”

Before I could censor it, I heard myself saying, “It always makes me sad. Why don’t we celebrate people BEFORE they die, you know? Why don’t we write tributes and stand up and deliver them to the people we care about? Why don’t we say, ‘You are important to me and I adore you’ before it’s too late for them to hear it?”

Just after the conversation ended, I turned to my business partner. “Hey, Johnny,” I said, “I’m really glad you’re in my life. You are a damn good person.”

He smiled a little awkwardly. I suppose I should work on some kind of preface for next time.

But dang it all, who’s on board? I mean really, what the hell are we all waiting for? The funeral? So I’m starting right here, right now. And I’m starting with YOU. Yes, YOU. So sit down and relax while I read to you, OK?

You, dear reader mean the world to me.

You who share my journey with a generous heart and a warmth that I could never have imagined nor designed.

You who take the time to leave encouraging comments and notes of support and love and understanding.

And you who don’t.

You who simply take the time to show up here and read.

You who get it – who get the joke and who get when I’m not joking.

You who simply say “I’m here” when you have no other words.

You who e-mail me with the gift of your own stories.

You who come here seeking comfort and hope in the sometimes dark and confusing early days of this journey.

You who have been at this for a decade – who paved the way, fighting for each and every morsel of help in a world that looked far different from the one we now inhabit.

You who have dropped the ’step’ from step-son and who have poured your heart and soul into raising your husband’s precious son as your own – autism and all.

You who teach and support our children each and every day and who still come here seeking further insight and understanding.

You who see yourself in Kendall – who recognize her challenges (and strengths!) as your own and who offer your humor, love and a perspective that is worth its weight in gold.

You who have pledged to take responsibility for teaching your children what it means to show tolerance and compassion to their peers and who come here by way of doing the same.

You who don’t have children but who know that that does not separate you one whit from this village.

You who celebrate the victories that mean so damn much and who so tirelessly cheer for all of our precious children.

You who are grandparents and aunts and uncles and cousins for whom this may not come naturally, but who want to understand.

You who ask how you can help.

You who send gentle missives telling me to drop the disclaimers – reminding me in no uncertain terms that life is not a contest to see who has the hardest road and that my experience and my pain and my worry for my daughter are no more or less valid than anyone else’s.

You who remind me that I am not (and more importantly that my little girl is not) alone.

You who show me day in and day out that there is an ARMY of love out there in the ether.

You who gently (and not so gently) force me to stretch and grow and see things from a different perspective.

You who convince me that I can keep doing this everyday, even when I’m pretty sure I can’t.

You who I am so grateful to have in my life.

I thank you.

And I celebrate you.

snack time conversation

*

*

Yesterday morning, Matt took Kendall to the doctor. In and of themselves, these trips are a reminder of just how far she’s come. Up until about eighteen months ago, Kendall was morbidly afraid of any kind of doctor. Every visit was an epic struggle through a full-on melt down. She would kick and scream and cry from the moment we walked into the office. She looked like she was fighting for her life, and I’m sure she thought she was. It was AWFUL.

But now – after TONS of role playing (I mean TONS), a couple of different social stories and a whole lot of language later, she’s just a kid going to the doctor. Not something she’d like to do every day, no doubt, but Ooh, look! They have stickers!

The doctor asked Matt to collect a urine sample. (Ah, yes, the glamorous life of a stay-at-home Dad!) Unfortunately, they hadn’t anticipated this, so Kenz had taken care of her business just before leaving the house and hadn’t had anything to drink since. As diligently as they tried, it just wasn’t going to happen.

The doctor performed the rest of the exam and Matt promised to bring Kendall back after school (loaded up on water) to leave the sample.

In the middle of the day, I got an e-mail from Kendall’s aide, saying she wanted to share a funny story.

Apparently, Kenz had been having her snack next to another student. Of course snack time is one of the day’s best opportunities for social interaction, and our fabulous aide always makes sure to get the little ones talking to one another.

By way of making conversation, Kendall’s little friend asked her what she had done at the doctor earlier.

And of course she answered, “I did NOT pee in a cup.”