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November 24, 2011 / paperkids

One long summer

I just skyped with mom and dad for the second time in two days.  This time of year is the hardest you could say.  It’s amazing that with a couple of mouse clicks, I can be transported to my childhood kitchen table where my parents have set up their laptop hooked up with wi-fi.  It’s even more amazing to me that they have wi-fi in a house that doesn’t even have central air yet!  They did, however, get two brand new wall unit air conditioners for the summer because they knew we were coming.

Every spring for the last six years or so, I prepare for our summer trip to Florida.  It has to be a direct flight, of course.  I’ve learned that the hard way when traveling with two children with autism.  The transitions off and on are difficult enough for Emma and Hayden, but add  a delayed flight, or a flight where we have to get off and then on another plane…or the oh-so-dreaded flight that stops and we don’t get off.. well, that’s just asking for a catastrophe.  And because I stay much longer than Jared can, I’m usually flying solo with the kids.  So I pick a nice direct flight and have found that the red-eyes work the best actually.  I don’t sleep, but the kids can a little.  I could write a whole post just on flying.

We take off at LAX.  Why Los Angeles?  Because this has been my home off and on since I was 24 years old.  We are a bi-coastal couple, Jared and I.  He’s from LA (yeah, he’s one of know,  that  actually grew up here, auditioning and going to school  in the Valley).  And I am from Florida (yeah, I’m one of those girls – we like to lay in the sun, don’t mind drinking beer from a can and use “ya’ll” and “fix’n” a lot.)

So getting back to the air conditioning… Well, they bought it in part because we were supposed to move there this summer.  That was the plan, anyway.  I spent three long months in Florida this summer in a state of -well, there isn’t any other way to put it – insanity!  It was down right embarrassing, actually.  How many tantrums did I throw?!  How many crazy fights exploded?!  My emotions were all over the place – the fear of change, the sadness over the loss of my life here and friends and the change – the CHANGE!! , the fear of losing services for the children because, let’s face it, California is loaded with services.   But I loved the idea of this life in Florida with visions of my kids running on the white sandy shorelines, twirling in the open pasture at my parents house, running to my parents because they are basically taking over cooking meals and giving baths, gazing at the stars that drop over the open countryside, maybe helping to grow a garden or raise some chickens.  I could just see it!  Maybe the kids could just feel like regular, typical kids because my parents never make them feel like anything other than adored grandchildren.  Maybe I would feel more rested in the end …

But what was I doing??  What if I was wrong?  Maybe what this idea really was… was CRAZY!   I knew what my parents wanted and I knew what my friends here wanted.

But what did I want?

Anyway, in the end after months of relentless indecision (I lovingly now call Jared and I the “indecisive twins”), we decided to stay in California (for the moment anyhow).   Hey, I’m just trying to get through each day as it comes, okay?!    I still don’t know if it was the right decision,  but it was a decision.  One that was very hard and heartbreaking to make.  I try to stop myself from thinking about this other life that I could be having, although it still seems a little scary.  I know I’ve written about it before, but it always feels like a piece of me is split in two, living two lives.

It was one looooonnngggg summer no doubt.  But it was one great summer, too. – full of honesty, reflection, joy, heartbreak and love.

My house says unto me, “Do not leave me, for here dwells your past.”

And the road says to me, “Come and follow me, for I am your future.”

And I say to both my house and the road, “I have no past nor have I a future.  If I stay here, there is a going in my staying; and if I go there is a staying in my going.  Only love and death change all things.”

– taken from Sand and Foam: A book of Aphorisms by Kahlil Gibran

Here’s a little slice of summer that I thought I’d share:)

October 20, 2011 / paperkids

This year’s reflections

I opened Emma’s backpack after school one day and there it was – the flyer for Reflections, our school’s annual art/literature program, trying not to get tossed or lost in the paper explosion.  Standing there in the kitchen, I began to have a reflection of my own.  My God, had a whole year already gone by?!  I remember last year browsing the entries during the gala at school, including Emma’s poem.  I never could’ve imagined two years ago that I would have such a gift.  I couldn’t have imagined that my nonverbal, “low functioning” child with autism was a poet.  Who knew?!!!

It’s been one year, four months and twenty two days since I first heard Emma’s voice through the tips of her fingers onto the keyboard.  Sometimes I still want to pinch myself.  Can this really be? I think.  It all still feels so surreal to watch her move her finger from letter to letter.  What will she say?  It never gets old, not even when she’s blaming me for something in her blossoming pre-teen attitude.

“Hey, guess what Emma – it’s time to sign up for the Reflections competition.  Did you want do it again?”  How could she say no with that grin I had on my face?

I held up the ipad.  We are still using her Assistive Chat app with word prediction. I placed my hand on her forearm and she reached up to hit the “y” and then the word above.

Emma:  yeah

Me:  “Yay!  Do you want to write another poem?  Oooh, by the way, the theme is “Diversity means..”   The theme had me giddy enough, not to mention that it had been quite a while since Emma had typed out a poem and I was really looking forward to reading one.

Emma:  maybe a short story

Me:  “REALLY?!!  Okay!  I’m so excited!”

Some days go by and realize I haven’t had a chance to “chat” with Emma.  Especially if the day is busy and hectic, I may never get to sit on the couch and facilitate her arm while she types out. Unlike other ten year olds who chatter about their days at the dinner table or laugh and joke with their parents on the way to school, it takes time and a LOT of effort for Emma to tell me about her day.  Sometimes she’ll have to get up and walk around and come back to it, re-regulating her body in order to finish the sentence.  It may take 15 minutes just for her to tell me how much she dislikes the buckwheat pancakes I tried to sneak in on her.

Emma:  they are inedible

Of course, I had to laugh.  Despite how hard it is, and how long it may take, this gift of  communication has been a life-changer.   Facilitated communication through typing may not be something everyone understands (including myself at times) but just because it’s a different way, that doesn’t make it the wrong way.  Surely we know by now when it comes to autism,  nonverbal does NOT mean non-intelligence.  More than ever before we  have the means to explore those channels of communication.  Emma uses her ipad everyday as a way to express herself and connect to those around her.

In the following weeks, whenever we could,  I’d set the laptop up and have Emma work on her story.  It was not easy for her.  Not only was it something new, but it can’t always be easy when mom is right there over your shoulder.  Poor girl.  At one point she told me how hard it was.  I remembered what my mother always tells me.

Me:  “You know, Emma, just write from your heart.  Remember that the people reading this don’t know anything about you.”  I wanted to encourage her and still stay out of the process as much as possible.  “If you write from your heart, it’s going to be great!”

Wow.  Even as I said it, I knew that I should really start listening to my mother more.

So, after weeks and a few re-do’s, Emma finished her short and personal story.  The judges reading it may not know how much effort or time really went into it, but surely they’ll feel the spirit of the message.  I asked her what she wanted to call it.

Emma:  repairing your perceptions

So very Emma.

August 7, 2011 / paperkids

The road not taken

I certainly can’t say it better than Robert Frost.

Long I have stood looking down that path!!   Well, for a few months anyway.  But these have seemed the longest of my life.  And trust me, I am sorry that I cannot travel both.  There’s a huge fork in the road on the map of my life at the moment.  I’ve written plenty about it in previous posts, and even I’m sick of hearing my own spinning thoughts.  Everyone is SO over me!  “JUST MAKE A DECISION!!!” 

It isn’t so easy though!  There are  many factors and many emotions.  But I suppose a choice has to be made.  Life only moves forward after all, and at some point you have to just choose a path.

“Limbo is not living”  a good friend had said to me.  And she would be right, I guess. 

But what if I make a wrong choice and that one decision takes me down a road I wasn’t supposed to go down?  What if I was supposed to choose the other?! 

What if…..

I read a sign the other day that said: I’d rather live my life with “Oh well“s that “What if’“s.   I tend to be more the What if person.  But the truth is that you never know unless you do.  I’ve stared down both paths long and hard, but the only conclusion I’ve come to is that I’ll never know what lies around either bend. 

I’ve known this Robert Frost poem by heart since I was a kid.  I haven’t been able to get it out of my head lately.  In the end, it seemed that he took the road less travelled, but funny the name of the poem is The Road Not Taken.  Yet it doesn’t feel sad, but rather reflective; just like all moments that we look back on someday.  It’s good to know I’m not the only one in the world who has struggled with that great crossroads.  The interesting thing about life’s pathways is that no one else travels them but you.  No two can possibly be alike and where they lead you will be completely unique compared to anyone else in the whole world.  This is the single thought that has brought me solace in my decision.  I’ve put to rest the fear that there is a wrong choice.  Fear is always the enemy, isn’t it?  So I leave myself in the hands of the Creator of all my paths.  I’m sure someday I will look back and wonder about that other one I could’ve taken.  But by then I will likely have stumbled upon many other roads diverged, having only gone forward because you can never go back.

June 24, 2011 / paperkids

Remembering Tim

June 22, 2011

Mom always said that the day of death is better than the day of birth.

I guess I have a hard time understanding this. She told me it was a verse in the Bible and she would be the one to know – she’s read it a few times cover to cover. My mother would also know about death. So when she makes a comment like this, how could I possibly argue?

Today we all sat on the porch, letting this day wash over us.  It’s been building all week, like a wave that rises and sprawls upon the shore.  Twenty years ago today we lost Tim at the young age of thirteen. My parents lost a son, I lost my only brother, and the world lost one of the most outgoing, happy and beautiful people I’ve ever known.  That day it felt like our book of life had slammed shut and took with it the world as we knew it.  Nothing would be the same. But the pain of the moments of those days was such that who could think past getting through every day without him?  My days were flooded with grief.

But mom and dad…

It wasn’t until I first held Emma in my arms that I realized the level of that loss. The love like no other; the love for your child. I still don’t know how their hearts went on beating. 

Tim was everything that I wasn’t. I was sort of shy –I know, hard to believe now – and he was always surrounded by friends, always coming and going.  And the girls adored him.   He was daring!  Always trying things that I was way too afraid to try.  He was also incredibly athletic, which I was painfully not! He played sports and was good at all of them. I would’ve rather drawn pictures during recess. The most activity I would get would be getting hit in the face with the kickball time and time again.

June 22, 1991 began like all days do. In fact, that morning and the weeks leading up, were better than normal.  He and I had been fighting quite a bit like all kids that age, but this day he stopped by my door and we talked a little and smiled at one another. 

There are many details about that day that will remain, while others are a fog.

I remember standing on the side of the rural highway which led into town, looking into the ditch. I was too afraid to see the wreckage – the dirt bike they were on, the car, the ambulance – any of it. I remember the fear of getting to the local hospital only to discover that he had to be flown to a better equipped children’s hospital.  I remember the phone call we got at home while packing up his clothes, trying to figure out what to bring.   It was the chaplain at the hospital urging us to get there quickly.  My stomach churned on the two-hour car ride to the hospital, where I aimlessly picked up my Lord of the Flies novel and tried to read it to no avail. I had two scenarios playing over and over in my head. I envisioned Tim in a wheelchair, big balloons tied to it, bobbing around his large smile. I saw him lie there in a casket and knew that this just couldn’t be..could it?  There was a moment where I glanced at mom.  I’ll never forget her look.  She was praying.

I remember the uneasy feeling of being whisked through hospital corridors, the nurses hands planted firmly on my shoulders leading us somewhere that I felt sure we didn’t want to go. But we were desperate.  Where was Tim?  We wanted him so badly.  I remember mom, dad and I waiting for what seemed like forever in a small room.  When the doctor came in, he uncovered a lengthy list of injuries.  I don’t think we breathed in that moment.  Mom was the first to speak.  Are you trying to tell us that our son is dead?  When the doctor replied yes, I’m sorry, we all fell apart like sand sculptures crumbling – bits of us scattering in the wind.  Each standing alone, yet not quite alone.  He was surely with us.  I remember seeing Tim’s lifeless body in the hospital and I was too afraid to touch him.  Mom laid her hand on him and prayers filled the room and my soul. 

That night we drove away from the hospital without him.  We ate out and got a hotel room for the night.  It seems surreal now as it did then.  What were we feeling?  Shock, I imagine.

We didn’t want to go home, but we had to.  What else was there to do?  The house was soon flooded with food, flowers, words, and the distinct sound of children crying as my brother’s friends filled his room.  As for us, we felt alone in a house full of people. 

When it came time for the viewing, I couldn’t stop touching Tim’s body.  I was so afraid to walk away.  I wanted to crawl inside that casket and lay with him.  When would I see him again?  We each grieved alone, yet I felt His presence so close.  It was always with me. 

I remember for months after expecting Tim to walk in the front door or to hear his laughter.  His room was so empty.  I wanted to tell him things.

And then there were the images of other things that I heard, but never saw, that have branded themselves in my heart …. The vision of dad riding in the ambulance with him …. The letter we received that someone had been able to use my brother’s eyes – the only organ we were able to donate.  It made me want to laugh and cry … The vision of his best friend, who barely survived the crash, waking in the hospital and the pain he must’ve endured when hearing the news … Our neighbor who went out and washed the blood off the highway so we wouldn’t see it on our way into town. … The story my mom told me – of how in her darkest hour she pleaded with God to fill up the hole that was in her heart.  My dad had gone to the cemetery to pray for her.  She said God spoke to her saying

Fill it up with Me, Lynn.  I and my Father are one, and Tim is with me.

Fill it up with Me.  These are words I’ll never forget.  They humbled me to my core.

I remember my brother’s laugh.  I remember jumping off the barn roof, out of trees into the creek, dancing on our toy box singing to dad’s old 45s, cuddling in blankets on the couch on a cold winter morning, kissing him in front of his friends to his embarrassment, fighting and making up, jumping on his back, wanting to be him, making him carry my school books on our walk from the bus stop, being jealous of his fearlessness and happiness, seeing mom rub his back and see him kiss her mouth long past the age where most boys would … I remember his hands and legs, so much like that of my own son …  Yes, I’m really going there aren’t I?  I’m ripping that scab off and letting the blood flow. It fills that wound even as my tears wash it away.  It feels good to feel the pain.  It feels good to remember, like taking a deep breath.

“What do you think that means, mom?  The day of death is better than the day of birth.”

My mom has always admitted that this day means more to her than his birth.  She sat on the porch looking peaceful.  So many times I’ve thought, how could she be?  But I know how.  “I guess I always think of birth as such a gift.  Life is such a precious gift, Sabra.”

“But what about death?”  I knew my eyes were welling up.

Mom smiled at me, a heart full of pure God-given love.  “Death is going home.”

So many times I try to imagine what he would look like now.  When I think of him, I see his smile.  I feel my mom and dad’s love for us both.  I feel God’s love for us all.

What a gift you were to me!  One day, my brother, we will meet again.

This is one of the many poems I wrote about Tim many years ago…

June 5, 2011 / paperkids

Seasons of change

“This is the day that the Lord has made; let us rejoice and be glad in it.”    Psalm 118:24
Despite the fact that we’d flown over 2,000 miles, getting little to no sleep the night before on the red-eye flight from Los Angeles to Tampa, I found myself up at six o’ clock in the morning with the kids. Experiencing what might be the first of many meltdowns, I grabbed my mug of coffee and flew out of the creaky screened door before I lost my cool. Well, okay, maybe I had already lost it a little. These are some tough times after all. A time of uncertainty and change. And apparently the children are not the only ones who have a hard time with transition. And they aren’t the only ones throwing tantrums around here.
I began to walk the property. The grass was still wet with dew and air was still crisp and cool. Sunlight crept through mom’s large honeysuckle plant, showering the large open spaces with gold. The massive bush had grown from a few small stems and roots that my great-grandmother had given mom about 15 years ago. She uprooted them from soil in Georgia and planted them in the ground here where now they have grown into a sprawling fragrant bush.  I love coming outside this time of day here, early in the morning, when everything feels fresh and new.
There’s been a lot of talk about change lately. And I couldn’t be more in the middle of it. The four of us are going through such a huge upheaval with this move that it’s all I can do not to be scared out of my mind. I used to be up for anything! What happened to that girl?! I want her back! I don’t want to be afraid for life to happen.
Later on when all was calm, I did what I usually do when I visit home – I started going through old photos. Among the baby pics and some shots from the 80’s that will never see the light of day, I found a poem I must’ve written when I was young. And surely I wrote it out here. It looks like it went through a hurricane because, well, it probably did.
I was reminded of the beauty of a single day.  From the sun rise to its setting, every day is in constant motion. Even in nature, change happens all day long as days string into months and then years. I don’t know what the future holds for my life or what seasons of change are still to come, but I have been given this day.  And in that great expanse within, one thing remains constant – the unchanging Spirit who dwells beyond time and space, plants roots deep within my heart. 
May 13, 2011 / paperkids

back home

There is something I need to tell you.  There is something I need to tell myself.  But how to tell it?  And what to tell?  I wish I knew what  and I wish I knew how.  Already this all sounds so dramatic!

Basically, I have two homes…meaning I live in two places and have for a very long time now.  Not that I actually have two houses (I wish!), but I have two homes in my heart and I feel as though I exist somewhere in between them.  But since a person can’t actually live in two places nor have two lives at once like in that Sliding Doors movie, a choice must always be made – a path must be chosen.  But how?

I live in two places…

I live in a sun swept desert valley with rolling hills that turn green in rainy winter months.  My valley is just close enough to the vibrant energy of Hollywood with its unique palm tree and billboard plastered rolling hills; houses sprinkled all about as they drape the city.  Yet we are far away enough that it feels like a haven away from the crowded tangle of rundown freeways, the pretentious and the desperate, and a culture that fuels the flames of new trendy spots yet stokes the embers of those old school venues and neighborhoods to burn as hot as they were fifty years ago  because, after all, they are what give flesh to the bones of  LA.  The city is electric with small music theaters and hip cafes.   It doesn’t get better than seeing a band jam in one of those tiny venues in a  sketchy part of Hollywood, so close you can almost touch them.  Yet the city is surrounded by  natural beauty of  oceans, vineyards, mountains and even snow.

Just outside the city, our home is past the point where those that do live in the city, may feel as though they have driven too far and surely nothing could possibly exist outside  of Los Angeles.   So it’s nice to come home after a fun night out in the city with friends, roll onto the exit in our mini-van, and welcome back our life in the squeaky clean, ultra suburban bubble of safeness where we live, also referred to as “Awesometown” by its residents (totally not kidding!).  Basically this is where lots of people move when they still live and work in the city, but want to raise a family.  The schools are great, great services if you have special needs children with lots of regional center funding, and it’s as pristine as a city can get carved out of what is essentially the desert. …

But of course all those things are not what have me calling this place “home”.   That reason would be reserved for that life force that has me feeling like life here is worth any insanity or hardship – my friends.  We have become much more than friends, but rather like family, spending holidays together and meeting up for coffee or out for drinks.  Despite the fact that we are all so different, I pick up their gestures and little ways of speaking.  I laugh so hard with them and confide so much in them.  We are fighting for each other and holding on to each other for dear life.  We are in this together!  Without them, I’m not sure who I would even be.

And then there are dreams here which were made just for a misfit like me … a potential that exists here  that is hard to resist contemplating.  And despite the fact that you feel like you have next to no chance at being or doing anything special, being here makes you see the possibilities like no place else.   They seem limitless.  LA may be lacking in fresh air, but idealism is  in very great supply.




I live in two places…

I live in a warm, damp flat land with white sandy beaches and thick muggy marsh.  The air is heavy, but the weight of it is sweetly familiar and grounding.  The smell of earth rises up all around and the skies are clean with puffy white clouds that roll and darken, eventually letting down a torrent of rain and lightening that energizes the air.  My skin feels alive and breathing.  The waves of the gulf coast are mild and warm and have been with me since my earliest memories.  The pace is slower, people are friendly and natural – wild even – and no one seems to care what you do or who you are.   Life seems more a series of work weeks and  time off.   Although nothing too glamorous nor too overwhelming, it tends to feel just right,  like luke warm water the exact temperature of your skin.  There are no big benefits financially or state funded therapies for the kids in this state like in CA, which was part of the reason for the leave before, but it holds the promise of a more simplistic family life, which I’ve had a hard time building.  The appeal of this sub-tropic wilderness with plenty of retirees and lack of a swanky, bustling metropolis,  isn’t always understood by everyone.  You’d have to live it to really appreciate it.  It isn’t for everyone, but for us, it’s always represented a more calming life that is hard to explain.  Everything feels just a little quieter.   The night is filled with the sound of crickets and frogs and the stars shine bright from the open windows of my parents house in the country.  The grass is wet with dew and mist in the early mornings and the thick woods are alive with all kinds of creatures.

But it isn’t so much about the fact that I was raised in Florida or the beaches or unique beauty, but more about  family.  Having two kids with autism, I long dearly to give them as typical and calm a life as I possibly can muster.  I’m not sure I know what one is myself, but my parents provide a little extra sanity and support for the kids and for us.  There are so many times in this crazy life of mine, we could really use that!   Mom and dad are, after all, like second parents to Emma and Hayden.  But I know deep down that it’s much more than that.  Without my parents close, I always feel like something is missing.    Trust me, our family has it’s own set of issues, but it’s a heartbeat that flows deep and wide.  Being far away from them never gets easy as it probably should.  Maybe it’s the fact that I am now an  only child.  I wasn’t always so, but we lost my brother suddenly in an accident when he was thirteen and I fifteen.  Our family was changed forever.  It has been through so much.  That is why when I had Emma, it was like new life came into our family and what joy!  A gift from God.  Our hearts may be too intertwined, but I just don’t know another way to be in this life.
In my mind I can see the faces of my parents and feel their love.  The kids play in the water and lay around on the front porch.  My parents hold them close and a piece of my heart begins to fill.  I feel relief.  I take a breath of fresh air and exhale.

These two places are so different that you must change your whole lifestyle to adjust yourself to the environment.  You may even have to change yourself a little.  I should know, I’ve done it many times before and each time has been painful.  So how do you choose between two homes?

I actually don’t know how to and, truth be told, I have been going back and forth from these two places for the last ten years now.  Here for three, there for four, here for five and now…..

Each time we’ve moved there has been a reason, whether it be therapies for the kids, a job, a friend, or that look in my mom’s eyes that said more than words could ever say.

I pray to move forward.  I pray to not let go.  I remain somewhere in the middle.

How can I choose?

I live in two places.

Band of Horses –  On my way back home.

April 30, 2011 / paperkids

A letter of thanks

Any friend of mine will tell you that I’m a horrible Thank You card sender.  I try really hard, but when’s the last time you received a card from me?  I may even reflect on one that I never sent off for years, which leads me to ask the question, Why don’t I ever send them anymore?  I’d love to blame my mom (she was never great at it either), but that’s a pitiful excuse.  I’m pretty unorganized so that never helps.  I hate to think anyone takes it personally, but I’m sure they have.   I guess mostly I want my loved ones to know how much I appreciate the things they do for me.

After all, I LOVE getting cards and letters!  The other day,  I was pleasantly surprised to get a letter in the mail from my Granny who definitely has that card sending gene, even if she didn’t pass it on.

I still get letters from her with newspaper and magazine clippings about various things – everything from community happenings to autism to recipes (the gene that I definitely got from her was a love of food, recipes, and shell collecting and I still remember all those long walks on the beach, Granny)!  She puts little letters in there too, of course.  Recently, she sent me one with a worn folded letter inside.  It was a thankyou note from many years ago.

What’s this?!  It was from ME!?

It was a thankyou letter I wrote when I was probably about 8 years old or so.  Granny had given me a porcelain doll with jet black hair and a blue dress.  I think she may actually still be up in the attic somewhere at my parents house, although she’s probably not looking so beautiful now.  This tempts me to go looking for her this summer when I stay with mom and dad.  But what it really tempts me to do is write more letters like this.

When I think about all the people who I never thanked over the years, it makes me sad.  All this time for almost every day of my life, someone made my life better with their gifts, help, words, or just even seeing their smile.

So my new personal goal is to make sure I let my loved ones know how much I appreciate them.  I want to be that great card sender that I was once upon a time when I could write a full-page letter about a doll named November.  By God I will!!  I can’t make up for a past of never sending off cards or expressing my thanks, but hopefully it’s never too late to start!

So for now, let this post be my thank you  to you all.  THANK YOU so much for all you’ve done and still do!!!  I guess this means now I have to start buying stamps and getting those cards out, huh?.

And I love you so much, Granny:)

April 27, 2011 / paperkids


April is Autism Awareness Month and all month long, social media sites have been buzzing with articles and posts.  Surely the whole world must know of or personally know someone living with autism.   I’ve been thinking all month about what I could write in support of it.   Since  both my children were diagnosed with autism, it’s kind of a huge part of our lives.  I think so much about the future I want for them.

I racked my brain and wrote so many posts that just didn’t feel right.  What kind of message do I want to share with the world about autism anyway?

Recently, I sat down in my seat at the AMC theatre with my popcorn and coke and more napkins than usual.  I knew I would need them since I’d already begun to tear up just being there.  I was finally going to get to watch Wretches and Jabberers and see Larry and Tracy embark on their trip across the world, meeting up with others like themselves, who have severe autism and speak with keyboards just like Emma.  For a few of the fellow travelers that they meet up with, this was the very first time they had ever met anyone who communicated like themselves.  They took their message to conferences, visited temples, ate sushi and spoke with one another across a table in a cafe in Finland using a plethora of keyboards that frankly got me giddy inside.  I kinda geeked out on the variety of keyboards in the film.

They bore their hearts and souls to the core, sharing  desires, joys, and struggles that most of us could not comprehend.  They teased each other and joked around quite often.  In one of my favorite moments of the film, Tracy shared his deep longing to discover the  purpose of his life and it was so compelling on so many levels.    For these brave men, the trip went further than just the miles and ended up being much more emotional and spiritual.  My eyes stayed pooled with tears of laughter, pain, and a connection that I felt to these strangers that is hard to put into words.  It was like watching my life with Emma up on screen.  It was the most beautiful and exhilarating experience as my heart sopped up every second.  I have to admit I was sad when it ended.

When I was walking out, I saw a woman I had seen when I first arrived.

“God, wasn’t that amazing!?” I asked as we walked to our cars.

“Yes, it was.  It really made me mad, though!  I just can’t believe that boy in Japan wasn’t even allowed to attend school.  So sad!  I work for a school district and I see it all the time just breaks my heart.”  She shook her head and I could tell she’d been crying too.

“Yeah, but this is so exciting!  Things are going to change for these kids!  I am so thrilled about all of it!”  Okay, I was probably coming off a tad over-zealous and jacked up on caffeine.

She smiled at me.  “I hope so.”

I understood where her anger came from.  I’ve felt it before and will feel it again.  The world doesn’t always give those with autism what they need.  We definitely need more support, better education and more funding for therapies.  There needs to be greater emphasis on helping those with autism to communicate and find their voices.  We need the world to understand that just because a person doesn’t communicate like everyone else, doesn’t mean that person isn’t intelligent.  Just because a person doesn’t speak with his mouth, doesn’t mean he has nothing to say.  Everyone wants communication!  When I think of my children and their future and hear the voices of those with autism, including my own daughter, I know that what those with autism maybe want the most  is to be a part of society and contribute to this world, just like everyone else.

I don’t think I could ever sum it up better, than something Emma shared with me.  I asked her what awareness meant to her and if she wanted to share her thoughts about it.

Emma:  please write yearn to understand that everyone with this reality is exactly who they are supposed to be

Now, this may seem like a radical statement to some.  It seems to go against the whole “find a cure” slogan for sure.   We talk a lot about destiny and personal success in our culture, but who determines value?  There are loads of books out there that will give you a plan for how to be the best YOU that you can be, but what they really say is that who you are, isn’t really good enough.  I feel these feelings of not being good enough all the time and I don’t have to deal with anything like the struggles that Emma does to communicate or control her body.  Yet she finds value in herself time and time again.  She  makes me want to love myself more.  I look at her and I think, aren’t we all special and unique – unlike anyone else on the planet?!  Aren’t we completely original and one of a kind – fearfully and wonderfully made and loved by God!?  And don’t we all have journeys to make and pieces of who we are to share with the world?

NO ONE can take that away!  Keep strong Wretches!  You have so much to tell the world EXACTLY  as you are.

FYI. If you want to catch the film, 100 cities are screening it on May 12th!!  It’s a MUST SEE!

April 16, 2011 / paperkids

Wide awake

Friday morning I woke up startled.  Something was wrong – or actually something was very right.  Emma had stayed in her room all night long and slept through the whole entire night!

This past week has been one of the hardest times that Emma has ever gone through.  Over the years, she’s had a few weeks of no sleep,  but this was something different.  I never really figured out why for sure, that she began waking up in the middle of the night engaging in a slew of odd, compulsive behaviors. She might fall asleep, but was up an hour later roaming from room to room pulling sheets and blankets off beds and taking clothes out of her closet and  pulling drawers out.  She spent a few nights screaming so loudly I’m surprised the cops didn’t come calling.  All night we would have to take turns containing her in her room.  We would hold her until she was very still, but inevitably she would pop up and fly out of bed again.  We couldn’t send her to school because she was screaming and scratching herself.  Exhausted in the daytime, her body was covered in bruises and cuts from meltdowns.

We had an idea that it could have been a few different things – a withdrawal from  a medication that we’d stopped recently, the drama surrounding our upcoming move, or maybe even something as simple as hormones.  I don’t know that we’ll ever know for sure.   During this week, I had moments of terror where I thought, “What if this doesn’t end?”.   I tried to stay calm by reminding myself that we’ve gone through phases before, but like I said, this was so different.

Me:  “Emma, what do you think this could be?”

Emma:  I don’t know

Me:  “Do you want to get up and do all of those things”

Emma:  no

Emma: I will continue to rest in God

Yes, we had been through tough times before.  But I was just beside myself.  And exhausted!  What was happening to my girl!?

I put a message out there and asked everyone to pray.  What else could be done, really?  And you all prayed.  Some nights I would hold her and do nothing but pray as I lay in bed with her.  We had even taken her to the ER at UCLA.  Even the strong sedative they gave her didn’t stop the compulsive night-time behaviors.  I got really scared when we bombarded her one night with sleep aids and she still woke – tired albeit – but very much awake and in a frenzy!!

Emma:  I will be okay

Me:  “I’m glad you are so hopeful and positive, Emma.”

We sat on the couch the day after another sleepless night.   How could she stay so positive?  It was just mind-blowing to me, but not surprising really.  She always seems so calm inside despite chaos on the outside.

I felt so helpless to do anything about it.  It felt like no one could help her and  I was quickly discovering that many doctors, psychiatrist and even developmental pediatricians don’t feel comfortable taking on or treating children with severe autism.  They keep telling me that we need to see someone who specializes more in kids like Emma.  Where are those people??  It’s all been very frustrating.  What if something was very wrong with her?  Who can help her?!  Where were the answers that we desperately needed!?

After about the fifth night or so, we sat on the couch Skyping with mom.

Mom: “Emma, I am praying so earnestly for you.  I have been pleading with God to bring you rest.”

Emma reached out to the ipad.

Emma: I feel rested

I couldn’t see how she could possibly feel “rested”.  I could barely keep my eyes open!  I looked at the deep circles under her eyes and her bruised up legs.  I guess she did seem pretty calm.  She should, I thought, with all the prescribed medication and stuff I’d been giving her at night to try to knock her out.  How it didn’t is a complete mystery!

Mom:  “That’s so wonderful, honey. I am so happy to hear that.  I pray everyday and will continue to pray.”

Emma:  prayer is the reason for life

I could feel my tired eyes burn with a fresh tear at this.   Mom and I shook our heads and beamed with delight at her words.

Me:  “Oh, Emma.  That’s so beautiful.  Very powerful.  Where do you come up with this stuff?”  I had to laugh.

Emma:  we are so lucky to have everything we need in prayer

Emma has taught me so many things about patience and trust.  I feel like her life is the perfect picture of  reliance on God to bring us through anything.  When I look at her, it’s easy to see His love and to see the inner peace and strength that trust can bring. It really was all she seemed to need.

That night Emma laid down to bed and never came out of her room.  She slept through the whole night, it would seem, without a stir.  The morning had come and we had all slept through the night!  I was flooded with relief and joy.  Of course, we had slept with one eye open, half asleep – half awake.  She slid into our bed in the morning with a beautiful smile on her face and eyes that were not tired, but wide awake.

March 26, 2011 / paperkids

App of the week : Assistive Chat

I am always searching for great apps.  I’m referring to applications for those not yet sucked up into the frenzy of ipad-iphone-itouch-iEverything mania. Since Emma received her ipad as a gift last year, it has been wonderful for both her and Hayden!  Hayden has learned so much from game/learning applications and it has served as Emma’s main source of communication with us!  What can I say, it’s like a part of the family now!

I have found a few from going on to other people’s blogs and seeing what their kids are responding to. There are more and more articles coming out about the success of using these sleek, cool touchscreen devices for children with disabilities. They are the giving the world of AAC (augmentative communication devices) a fresh new appeal and some pretty stiff competition as communication/literacy devices.

So I figured, why not contribute?!! I have definitely bought my share of crappy apps and so I’d gladly take the advice of  anyone who might be able to recommend a good one. It’s been helpful to be able to check up on distributor websites and youtube videos to see how they work. I almost never pay more than a couple dollars for an app unless I’ve done some research, so I’m glad for all those demos!

Emma has been using the basic yellow notepad (comes on every iphone or ipad) for a while, which has been fine. But because she types out each word, it can be tedious for her. It also cannot do what AAC devices do in that it doesn’t have voice output.

I have been wanting  to get the Proloquo2go app, but it’s $189.99, so I figured I’d try some other ones out in the meantime. Proloquo2go has a picture system similar to PECS, voice output and the ability to type out so it really is an efficient AAC package.

In the meantime, I’m so glad I was able to find Assistive Chat for $24.99 and it is basically a keyboard with voice output that has word prediction capability, which is what I was looking for. WP makes everything just a little bit easier. There are a scant 3 voices to choose from, but there is one that sounds childlike.  It’s perfect for Emma since she is typing everything out.  And you are able to save sentences, too.

Word prediction makes typing faster and easier!

Overall,  this has been a great app for making typing a little more friendly for Emma. She shared with me that she can type faster with it, which great for her.  The word prediction could be better and if you have to backspace in the word, it doesn’t “speak” the entire word, only the corrected letters.  But overall, it’s been easier and faster for Emma and that is a huge plus!

Btw, I recently found a great site call Apps for Children with Special Needs and it is an awesome resource that reviews apps and demonstrates them!!  It’s a great go-to site for discovering new apps.

Recent conversations can be saved. Here are a few of Emma's recent comments.

Here’s a very short video demonstrating Assistive Chat that I found on youtube.

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