angels shall guard thee

Help one another, is part of the religion of sisterhood. 

~Louisa May Alcott

How do people make it through life without a sister? 

~Sara Corpening

 

We discovered this beautiful arboretum yesterday. How have we lived here for four years without knowing that this was so close to home? It is a slice of heaven.

I was camera happy. It’s what I do. I document. 

The girls looked so sweet walking together. I thought I’d get a couple of artsy shots from behind them.

Forget art, I caught magic. Watch what happens as Matt and I do nothing but follow behind, in awe of our older daughter.

 

Darby spots a dog up ahead that none of us has seen yet.  (Kendall is EXTREMELY afraid of dogs.)

 

Darby protectively (and gently) guides Kendall to her left side, away from the dog.

And slightly off the path.

 

The dog passes by without incident. (Which NEVER happens.)

Darby is also afraid of dogs, but she has just proven that she has a heart far bigger than her fear.

A dear friend of mine very recently gave Kendall a beautiful silver medallion engraved with the words “Angels shall guard thee.” Yes, sweet Sue. They certainly will.

 

and now a whole bunch of words from our sponsors

The following has been brought to you by the letter Y and the number 2 and made possible by the generosity of a host of proud sponsors – ABA therapists, teachers, aides, parent educators, speech and language pathologists, occupational therapists and by contributions from people like you. Thank you for your continued support. (The tote bags are in the mail.)

This morning, Kendall woke up before I left for work. I heard her door creak open. We’ve intentionally left it unoiled. Its creak lets us know when the little eagle is on the move.

I opened my door and watched her shuffle toward my room in all her sleepy headed glory.  I crouched down and waited for her to come to me. I’ve conditioned myself to crouch and wait, though the restraint fights with every fiber of my being. She walked into my open arms and let me hug her. I breathed her in and felt whole again.

“Good morning, my little love.”

“Morning to you, Mom” – each word separately and slowly articulated.

I hugged her and we swayed ever so slightly.

“You gave me a hug.”

“Yes I did, baby.”

“You went like this (she rocked back and forth).”

“Yes I did.”

Matt turned off the water in the shower and stepped out into the bathroom to our right.

“Did you have fun in the shower, Dad?”

“Well, yes, Kendall, I did. Thank you so much for asking me!”

I want to scream from the rooftops. I want to hug everyone I see. (OK, not that skeevy Starbuck’s guy who can never, ever get my order right. But everyone else.) MY BABY HAS LANGUAGE!!!! LOTS OF IT!!!!! Spontaneous, unscripted, socially appropriate language. “Did you have fun in the shower, Dad?’ A question with no purpose whatsoever other than to initiate interaction.

The sky is the limit, my friends. 

I am so proud I could burst.

pot of gold

 

“But faith is different than love, Mama. Cause you choose love; but it also chooses you. Except with your family, because you have to love them.”  

- Darby, age 7 – Philosopher, Sage, Love of my life, Rising Second Grader - discussing faith, love and the power of choice en route to our Mama/ Darby dinner date

 

Darby and I enjoyed a wonderful date night on Friday. Her figure skating instructor had decided that it was time to take the plunge into some ‘real’ skates (meaning the $20 “I’m not at all convinced that this ice skating thing is anything more than a lark” skates from Dick’s Sporting Goods just weren’t cutting it anymore).  So we decided to head out on Friday after work and make an evening of it, including a special dinner afterward.

Despite the fact that it was pouring rain and that we were headed out to try on ice skates, Darby insisted on choosing an upscale, very grown-up restaurant, wearing a dress, and scrunching up her nose at Mama’s jeans. C’mon, now. It’s not that bad. They were dark, going out kinda jeans. I wore heels. It’s Friday night, people. There’s only so much I can do.

She’s a delightful little date. She dove into a soft shelled crab (Ooooh, I looooove it, Mama!). She politely asked if the bartender knew how to “do” a Shirley Temple. And she very nicely asked the waiter for a light when she ‘accidentally’ blew out the candle at the table.

Thoroughly enjoying a few precious moments of one another’s undivided attention would have been more than enough, but there was a surprise in store for both of us.

The rain let up while we were in the restaurant and the late evening sun began to reemerge. As a number of people began to stand up and peek out the windows, the maitre d’ came over to our table and told us that we just had to walk outside. 

When we did, we were awe struck by the presence of an unbelievable rainbow. It was HUGE and it dominated the sky with its overwhelming beauty.

It was amazing standing on the sidewalk in front of the restaurant with a group of strangers all looking skyward. I held Darby in front of me and was overcome by the moment. One of the men in the crowd pointed toward the ‘end’ of the rainbow and told Darby, “Right down there – that’s where the pot of gold is.” I hugged her a little tighter and told him, “Nope, the pot of gold’s right here.”

As we took our seats, I was struck by the thought that every once in a while it takes someone else – sometimes a complete stranger – to show us the miracles that are right in front of us. We would have had a lovely dinner, but we also would have missed all that beauty had it not been for someone who took the time to tap us on the shoulder.

Yesterday we spent the day with my dear girlfriends from our former life in Connecticut. It was a joyous day filled with love and laughter as our families reconnected. One of the ladies told us about her friend whose 6 week old baby had just passed away. Her friend, she told us, had said, “We were so blessed to have had 47 glorious days.”

Every one of us in my girlfriend’s kitchen steadied ourselves. There but for the grace of God go I.

And then we all went home and each had the incredible privilege later that night of tucking our babies into bed, but this time with a poignant awareness that we had just been blessed with yet another glorious day, thankfully among far too many others to count. It took the grace of a stranger in her time of unthinkable tragedy to remind us that our children’s very lives (and our fragile places in them) are nothing short of miraculous.

Rainbows are everywhere, and sometimes, like objects in the rear view mirror, the pots of gold are much closer than they appear.

But we don’t always see them without a little help.

 

and the award goes to

 

“The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance, but live right in it, under its roof.”
—  Barbara Kingsolver  Animal Dreams

I would like to believe that people are fundamentally good. Although I admittedly find much of the population to be somewhat annoying; I really don’t think that man is for the most part intrinsically ill-willed. Particularly doctors. It seems reasonable to assume that people become doctors because they have the desire to help others; and it follows that those who go into the specialized fields of developmental medicine and pediatric neurology likely have the best intentions to serve our children.

So I will give them the benefit of the doubt and presume that when they try to moderate our expectations around what our children will be able to achieve, they do so for what they believe are the right reasons. 

HOWEVER, no one has the right to take away hope. NO ONE. Capitals? Bold? Underlining? How best do I make the point that this is something that needs to be shouted from the rooftops?

No one has the right to look at my friend’s 5 year old boy and tell her that he will never have language. No one has the right to tell a parent that there is no point in pursuing further therapy. No one has the right to look at a three year old little girl and tell her parents that she will likely live a solitary life. 

Didn’t that last sentence sound absurd? I ask you to read it again.

When we initially had Kendall evaluated, it was by a very well respected doctor at a well regarded facility that is associated with one of the most highly renowned hospitals in the nation. When the doctor first delivered the news of her diagnosis, Matt and I were reeling, as any parents would be. As we fought to regain our balance, we asked whatever questions we could manage. Some of them were practical. Some of them were theoretical. All of them were born of the shock, confusion and terror that comes with hearing that your 3 year old daughter has autism. 

Matt asked the doctor, “What does this mean down the line? What does this mean as she gets older – let’s say at 10? At 18? What will her life look like? What does this mean for her as an adult?”

The answer to all of those questions should have been, MUST have been, “I understand your concern and your desire to prognosticate; but I have no way to tell you what she will be like at any of those points in her life. There are myriad strategies and therapies to employ. There are endless variables. There is no way that I could possibly look at an untreated autistic 3 year old and tell you what she will be like as an adult, no more than I could look at her older sister and tell you what she will likely do for a living.”

Matt’s questions were as completely understandable as they were totally unanswerable.

However, the well respected doctor in the well regarded clinic attached to the well renowned hospital looked at my husband and said the following,

“She will likely live a very solitary life. She will not be comfortable around people and will most likely live alone.”

How dare she? Let me say that again. How dare she? Which document on her wall came with a crystal ball? 

I knew in my gut that she was dead wrong. I knew from the moment she said it that it was NOT the Kendall that I knew that she was talking about. My baby loves people. She craves social interaction and her desire for it couldn’t be more obvious to anyone who is looking for it.

Back then she had absolutely no tools to interact appropriately; but I’ll be damned if she wasn’t trying. She would say half a word and then eagerly wait for us to fill in the other half. THAT was Kendall’s dialogue. From the very beginning, she was trying to reach out.

When we entered the school system, Matt and I presented at the very first IEP meeting fresh from that evaluation. I choked up as I tried to tell the roomful of educators that this is what we had been told but that I knew that the doctor was wrong. “She just needs the tools,” I said. “I know the doctor is wrong.”

I will never forget the moment when the school’s staff looked at us knowingly and in a chorus of affirmation said, ‘We have a whole shed full of tools and we’ll teach her to use em all. We live for proving doctors wrong. It’s our favorite thing to do.”

Kendall’s preschool celebrated their last day of the regular school year today. Although she will continue at the school through the summer, it was still a momentous day and the teachers did a wonderful job of commemorating the year. The lead teacher gave each of them their own handmade ‘yearbooks’ showing their (astounding!!) progress and then created award ceritficates for each of them. 

There was an ‘expert block builder award’ and a ‘best trampoline jumper award’. Each child received a special certificate detailing and celebrating their particular strength.

Kendall won the award for the ‘most caring friend.’ She was described as sweet and compassionate and an amazingly caring and concerned friend. Well, guys, you proved that (expletive deleted) doctor wrong in spades.

Together we all proved the insanity of extinguishing hope. 

We must not – we can not – let anyone make us doubt what we know is possible. Our children deserve more than that. My ‘most caring friend’ sure does.

 

decontextual laughter

 

“Additionally, she did demonstrate certain idiosyncratic tendencies … Several instances of decontextual laughing were also observed.”

Periodically, Kendall bursts out laughing. I mean all out belly laughing. Cracking herself up, doubled over, can’t breathe kind of laughing.

And we have no idea what’s so funny. Maybe we’re not paying attention. Maybe we just don’t get the joke. 

We used to ask, but it became a circular script.  The questions still unearth the last vestiges of her echolalia.

“Kendall, what’s so funny?”

“So funny.”

“What are you laughing about?’

“Avout” (with a ‘v’)

We’ve gotten so much better at decoding the mysteries of the melt-downs, but the fits of laughter remain their own puzzle.

But here’s the thing -

As much as the laughter may be inappropriate at times, it seems altogether inane to try to curb it. For heaven’s sake, why would anyone want to ‘cure’ spontaneous bouts of joy? 

Is there anything more pure than a child’s laughter? Is there anything more life affirming? It’s like fresh air. I can think of nothing that fills my soul and renews my spirit the same way.

Someday I hope she’ll let us in on the inside joke. In the meantime, yuck it up, baby girl. Yuck it up!

 

 

matt

 

 

 

Because you defy categorization

Because you love freely and without reservation

Because you love Kendall for who she is and never despite her challenges (you just don’t think that way)

Because you love Darby with everything that you are

Because you love me, even when I’m hardest to love

Because you text my mom to tell her we’re home safely after a visit

Because you really are a son to my dad

Because you are the president of the PTO

Because you smile and chat with .. everyone

Because you don’t teach our children how to respect other people; you show them

Because you make everyone feel like a friend

Because you teach us all how to say “I’m sorry”

Because you do the grit work that allows me to chase my windmills

Because you are my greatest champion when I do

Because you take over when I need to shut down

Because you are patient beyond my comprehension

Because you encourage the girls to create something every day

Because you see no limitations on what our girls can be

Because you remind us that there is humor in everything

Because you see the beauty in everyone

Because you trust people before you don’t

Because you are a student of our children, just as you are their teacher

Because a reasoned argument can change your mind, but no one will ever change who you are

Because you wear shorts all year long, undaunted by winter in New England

Because you believe we can change the world

Because you are stronger than steel

Because you are the best Dad our girls could ever ask for

 

Happy Father’s Day

With admiration, gratitude, and love

strong

 

And sometimes in a moment of weakness
A single tear falls, and that’s all

She’s strong – she’s got the world on her shoulders
She just keeps carrying on
She can take the heat; she can take the cold winter
She’s got faith there’s no quit in her
She’s strong

-Tracy Lawrence ‘Strong’

She was trying to cook dinner for her children – her 3 year old daughter and her 5 year old son with severe autism.

‘Not 30 seconds, Jess. I didn’t turn away for 30 seconds.’

He was gone.

She ran to the neighbors yard. He’d been drawn to their bubble machine.

He wasn’t there.

The neighbors rallied.

A frenzy of motion – ‘We’ll find him.’

She called 911.

‘My son doesn’t speak. I can’t find him. Help me.’

They told her to stay in front of her house.

She knew she couldn’t. He wouldn’t be coming back on his own. ‘I have my cell phone. I’m looking for him.’

Not long, but a lifetime.

A neighbor found him down on the street by the school. He was trying to find a car door that would open so that he could climb into the back seat and buckle up. He’d wait to go for a ride.

The neighbor gently brought him home.

The policeman said, ‘You need to watch him.’

I look at my friend’s pleading eyes as she tells me the story. The emotion is so raw. The anger is so palpable. The defeat is so fresh. Outrage. Frustration. Disbelief. Hurt. ‘How can he tell me to watch him?’

‘24/7 I watch him. All I DO is watch him. I had to FEED him. I was cooking for him.’

It was her neighbor’s voice that said, ‘All she does is watch him!’

But those words will sting. The blame.

As parents, we all spend so much time blaming ourselves for one thing or another. As parents of children with autism, it becomes an obsession. It must have been something I did. Or something I didn’t do. Something I exposed him to, or didn’t. I wasn’t there enough. I was there too much. I had blue cheese dressing when I was pregnant. (No, really. I’ve thought of that.)  I didn’t know that there was thimerosal in her flu shot. I didn’t know what thimerosal was. I still don’t know if it mattered. I didn’t nurse him long enough. There must have been something I did. ’I turned my head to the stove for less than 30 seconds to feed him. And he was gone.’

This was NOT her fault. It was her nightmare. It was what she spends all day every day trying to avoid. But one thoughtless officer summed it all up with ‘You need to watch him.’

The neighbor came to her and said, ‘We are with you. When you fly; we fly. We are in this together.’

I hugged her. It was all I could think to do. I felt powerless. Small.

A single tear fell and that was all. And then she was strong again.

I’m sure the officer meant no harm, but ignorance leaves a mark. Educate people. Sensitize people. Let them know what it means to care for a child with no understanding of boundaries or safety or fear. It is up to all of us to protect our children and to support each other. When she flies, we fly. We are in this together.

 

 

 

 

(spi) ritual

 

 

ritual n. any practice or pattern of behavior regularly performed in a set manner

 

spiritual adj.  of or pertaining to the spirit or soul, as distinguished from the physical nature / of or pertaining to sacred things or matters; religious; devotional; sacred.

 

 

Every night before bed Kendall and I go through our bedtime routine. It’s a relatively elaborate dance whose choreography has evolved over time. The ritual once took place in a rocking chair across from her crib. It eventually moved to the edge of her toddler bed on the floor. It now happens snuggled into the covers of her big girl princess bed, nearly smothered by a gaggle of stuffed animals, each of whom must be present and accounted for before we can begin. 

 

We read two books (not one, not three, but two), we head to the bathroom for ‘that one last time’, and then we ‘hop into bed’ (in quotes because she literally hops in and then says, ‘I hopped-ed into bed’ with a grin, all part of the dance) and then we turn out the light and curl together in the dark.

 

I sing a couple of made up versions of Lullaby and Goodnight (does anyone really know the words to these things?) one to Kendall, one to Boots the Monkey, followed by a slightly off key but earnest delivery of Rock-a Bye Baby. Note: My grandmother likes to say that she has always been able to sing the perfect lullaby because every child she knows chooses to sleep rather than to be tortured by her voice. Despite my delusions to the contrary, I have no doubt inherited Grandma’s musical talent.

 

We then lay quietly for a moment before she starts her prayers.

 

And then, in exactly the same way every night, with the exact same words spoken in the exact same order with the exact same intonation, she says the prayers that we have created together over time.

 

Dear Father

Hear and bless

Like beasts and singing birds

And guard with tenderness

Small things

Have no words

 

So far a fair approximation of a Child’s Prayer for all of God’s creatures. What are a few missing words between friends?

 

Admission – This came not from a children’s bible or some other equally lofty place, but from the last page of our time-worn and love-tattered copy of A Child’s Goodnight Book by Margaret Wise Brown. Like many high functioning children with autism, Kendall has some pretty serious challenges with expressive language; but she is able to recite books and scripts of movies and television shows. She knew this book by heart and the last passage eventually evolved into her bedtime prayer.

 

When we read it together in the early days, I remember thinking how grateful I was (am) that Kendall has words. I still thank God for that grace each and every day. I thought the prayer was a beautiful way to remember so many children who are not blessed with the ability to speak at all. 

 

I think of the friends and the parents who I’ve spoken with or whose words I’ve read who pray every day to someday hear their child’s voice. I think of the wonderful woman whose blog I read almost obsessively, whose beautiful son Jack is non-verbal. She keeps working and fighting and clawing to find ways to give him language. 

 

And so I think it is wonderful and fitting that at the end of every day, Kendall asks God to ‘Guard with tenderness small things that have no words.’ It is a salient reminder to both of us that amid our challenges there are abundant blessings and that there are others who face much more than we do.

 

God bless Mommy

God bless Daddy

God bless Darby

And God bless me

Amen

 

I painstakingly taught her that last part, but what follows is all Kendall.

 

And bless

There was a way

By eating and drinking

That my mama loves me so much

Here and near

By eating and drinking

Amen

My mama loves me so much

 

I had nothing to do with this and I can’t claim to have any idea what it means to Kendall.

 

I started calling her my little Taoist when she added this piece. It reminds me of what I’ve read about the Wu-wei (which is admittedly mostly from the Tao of Pooh, if I’m being honest.) Through the Wu-wei (as I interpret it) we embrace the natural order of the world, finding the beauty in the day to day process of being and doing.

 

“By eating and drinking,” she says, “my mama loves me so much.”

 

Love is being.

 

Perhaps this is just another of Kendall’s many rituals and I’m assigning far too much meaning to it. But if you look at the words defined above, it only takes the 3 letters “S” “P” and “I” to make the ritual spiritual and to make the process itself sacred.

 

We cuddle together

 

And then we do, and our ritual comes to its end.

 

Until the next night.

 

Amen.

on second thought

“Rabbit’s clever,” said Pooh thoughtfully.
“Yes,”said Piglet, “Rabbit’s clever.”
“And he has Brain.”
“Yes,” said Piglet, “Rabbit has Brain.”
There was a long silence.
“I suppose,” said Pooh, “that that’s why he never understands anything.”

We have a crystal light fixture in our upstairs hallway that throws its light outward onto the ceiling around it. The light feathers out from it and creates an intricate pattern of light and shadow on the ceiling.

This morning, I found Kendall laying down on the hard wood floor beneath the light. I sat down with her and she shifted her head onto my lap but continued to stare at the light.

‘Kendall, what do you see?’

‘I see the music.’

And she began to sing very softly.

‘Twinkle twinkle little star / How I wonder what you are / Up above the world so high / Like a diamond in the sky / Twinkle twinkle little star / How I wonder what you are’

Her small sweet voice is like the smell of baking bread. It wraps itself around me like a warm blanket and leaves me wanting more. But she’s quiet again, staring at the light.

In the light she sees the music.

Did I say I couldn’t identify the upside to her autism?

Maybe, as my dear cousin so lovingly reminded me after last week’s post (see her comment below ‘benefits package’), I just need to start paying closer attention.

benefits package

 

 

 

 

 

 

 

We were at the playground above the soccer field again last week, you know .. NOT playing soccer  .. when we bumped into a dear friend’s father. I didn’t know him, but he was watching my friend’s young daughter while her son played soccer (on the team that Kendall was supposed to be on). The little one came running over to me on the playground, and my friend’s dad came over to introduce himself.

 

When he saw Kendall in her team shirt, soccer shorts, cleats and shin guards he made the (not unreasonable) assumption that she should be, well, oh, I don’t know .. playing soccer, maybe .. with the other kids. He smiled as he cocked his head her way and asked if ’someone had a little attitude’ this morning. I bristled a bit, but kept in check and smiled back as I explained the situation and why we were taking some time out.

 

He was very kind and very inquisitive. He wanted to be educated about autism and what it actually means for Kendall.  He asked a lot of questions. Since I’ve dragged out my soapbox and preached about how important awareness is to our kids (read more here) I hardly feel like, no matter how emotional I may be at any given moment, I have the option of shirking my responsibility to educate people who are asking to be educated.  And so I did my best to answer his questions as thoughtfully as I could.  And then he threw me for a loop.

 

“What,” he asked, “is the upside to her autism?”

 

No, seriously. That’s what he asked. I stammered. I stuttered. I bit my tongue because quite frankly the first thing to come to mind was, “Are you (expletive deleted) kidding me?”  

 

But he was still looking at me with a kind, open face and he was waiting patiently for me to respond to his question. So I fought impulse #2 which was something along the lines of, ”Well, gee, if she were in a wheelchair we’d get to park in those great handicapped spaces, but bummer, she doesn’t get that.”

 

Think, Jess, think. So I did my best to talk about how the ability to maintain a single minded focus had produced some of the world’s most talented and influential scientists, musicians, writers, researchers, artists, etc. I told him that it’s often said that Einstein was likely on the spectrum. I didn’t even remember to mention Beethoven and Newton. I was fumbling.

 

As we spoke, I watched Kendall. She was digging in the sand alongside a group of slightly older girls. They were all chatting happily and teasing and joking with each other. And she was digging. Alone in the middle of a group of girls.

 

So what is the benefit to Kendall? What about having autism is positive for Kendall?

 

Well, there are all of the wonderful people that are in her life, I suppose. I can’t discount the amazing benefit of having had all of these dedicated teachers and therapists caring for her.  Many of them are truly as invested in her success as we are. She is surrounded by love and lavished with praise all day every day.  Hey, that’s good, right?   

 

I wish I could say that there is more in it for her. But at the tender age of five, I have yet to see much of an upside to autism for Kendall. Most of the upside is what I see her do despite autism, not because of it.

 

But I can say a lot about what it has done for those of us who love her.

 

The day that we got the initial diagnosis, Matt and I sat in the parking lot of the medical building and tried to absorb our shock. I remember sitting in the car and saying to him through tears, “If nothing else, no matter how this all turns out, the experience will have made us all better people – you, me, Darby, all of us.”

 

Well, it did. And it did in spades. We are all more sensitive, more aware, more caring, more invested, more connected and far more compassionate than we ever would have been without having had the opportunity to experience the world differently. It feels awfully self centered to put it in those terms, but I can’t deny the truth in it.

 

Darby’s homework this weekend was to begin to write what her teacher is calling their ‘family vine’. For each of her family members, she had to write 3 unique contributions we each make to the family. If you’re wondering, I make all the money, buy her clothes (and shoes), and make her feel better when she’s sad. Thankfully, not in that order.  

 

Kendall, she wrote, makes us laugh, gives us love, and makes us better people and better friends.   

 

Amen.

 

~ Oh, and a post script. That picture up top? This is a child who wouldn’t jump from a 2 1/2 inch mat to the floor 18 months ago. Baby steps have turned into leaps and bounds (literally). I now have my heart in my mouth each time that my little Evel Knievel takes flight, and I couldn’t be happier!

 

(Click on it if you’d like to make it bigger!)