Sometimes it’s hard to describe life when someone asks “how are things?” because things are always changing. And change is always good I think, even when it’s hard.
It took a while before that desire subsided, the instinct to dash to the computer and furiously pound out Emma’s words to anyone who wanted to read them. Oh, I still keep all her words. Lately they are coming slower and sometimes not at all. She goes through phases. They might come one word at a time over the course of a day. But other times they seem to flow so easily that I’m almost convinced she’s holding back on me. Still at other times, her sentences drift off to leave me wondering what she was going….
What was it she wanted to say? I guess I’ll never know. Some sentences never get any closure. At times it takes her so long to answer questions that everyone might be three conversations ahead of her. Maybe it wasn’t all that important to her I tell myself. I hope anyway.
The world moves fast these days.
I find that asking her simple questions is sometimes the hardest task for her. She’ll type a letter and then hit backspace and it might go on like that for a while.
Me: How was your day at school today?
Emma: usually I yearn…really ….
or it might look like this:
grrseeaxtc w was si]==o desdetdrted zt recesatloo hor=t
Me: Ok Emma you have to sit up like this” I correct my own posture. “C’mon let’s concentrate, okay? You can do this.” She models me for a moment, arching her back and leaning forward. My hand rests on her shoulder giving her a little pressure or sometimes her elbow, giving her hand light or hard squeezes in between letters as if to “reset” it. She might type out one letter and just get up and float around the room. It really all depends on how she is in the moment. And I know this may all seem so scattered and inconsistent, but hey…
That’s just how it is.
Once or twice a month she’ll wake up and I know it. It’s going to be a rough day. I see that far off look in her eye. I know that she’s on edge and any small thing could set her off like a dead ipad, or an awkward transition off the couch, or sometimes it seems nothing at all. I’ll hear her screech and pound her head into the couch arm. During these times, I try to find new and creative ways to deal with these episodes and I get almost protective over her as if to say, “I’ve got it. Just leave us alone… we’re okay.” I brace myself to handle anything and rise above the nerves. Sometimes Jared and I switch off to whoever has the most patience in the moment. I watch her writhe and kick and I have to position my body over her to secure her from breaking things and keep people from getting hurt, including her, until it passes. These moments are maddening for us all as we just try to get through it. I tell her to breathe. I tell her “it’s ok. It’s just one of those days, Emma.” I lay my hands on her and pray both silent and out loud and sometimes angrily. I give her anxiety relieving meds. I put my hands all over her and say “peace…peace….peace.”
I tell her that this will pass.
It might take two days for the periodic meltdowns to subside. We rest in tears and sweat after and I know that we are okay for now. Our limbs are jumbled up and intertwined on the bed and I can’t help but feel a sense of optimism and euphoria that this storm has passed and we handled it the best we could. We enjoy the moments of peace as they come to us.
This is how it is.
I have read enough to know that Emma is not alone in these times and that many other kids and adults with autism struggle with these kinds of behaviors and especially in adolescence. Yet lately Emma is changing. Those times are getting easier somehow. I see something new in her eye. I look over and she’s staring at me in her deep silent way, her large blue eyes breaking me away from any worldly thought. She reminds me of what is important. She reminds me to slow down and appreciate life. I pray better. I believe more.
Despite how hard things are for her, she often wears a confident smile and those eyes shelter some kind of wonderful secret that she doesn’t feel the need to share. Certainly not like I do. And lately she has begun imitating me in a whole new way! I find her walking right behind me. I might look over to find her watching me closely, moving her hands and head to imitate mine. She stares at my and Jared’s mouth and we work on trying to say letters. When I pray at bedtime she begins to softly mumble, her words flowing underneath mine and I imagine she’s working on saying every word, so I slow down. “Thaaannnnkkkyouuuu forrrr thissss dayyyyy”.
She has the “amen” down.
Yes, she’s working so hard. She seems more determined than ever at certain things. I’m backing off more. I’m having her do things that might give her some independence. She can make her own oatmeal with a little help and no longer has such a hard time with transitions like she used to. She loves to dance around the living room with me and smiles when her brother steals her ipad. I am having her wash her face but sometimes she gets confused and might rub a cloth full of soap in her eyes. This self help business is a long process. I watch her struggle with a body that won’t cooperate with her thoughts no matter how much she wants it to. I sometimes see people stare at her or say “she doesn’t understand” and want to scream…
“She’s really smart you guys, but she just can’t stop her body from doing that!!! OKAY??!!!!! She’s just like you…she hears everything you’re saying, do you understand??”
But of course, I don’t always speak up unless there’s an opportunity. Would my words change anybody’s perceptions? I hope and pray.
This is a journey of ups and downs for sure, but the storms are always – will always be – temporary. It’s during those times that we realize our strength and where it comes from. It’s in those times that we have to let go and trust God. Soon the sun comes out and shines on all of us, lighting the path again.
And again we go forward, but never alone.
Here is Emma’s latest poem. She typed it out in a steadfast, easy manner, although it took her a few days. She may have a hard time with small talk, but her poetry says more than most could. What a blessing and gift she is!!!
Using gods unruly teaching
Teach me
I yearn for the
outside of yesterday
you gesture to me
to assemble
a weary two days
where using your
quieting accolades
of ways typical to you
they rise up
year after year
printing love, rest
and peace
across the universe.
– Emma M. 2012
“You guys are gonna love this!”
My dear friends gave us the Star Wars trilogy for Christmas and ever since then I’d been desperate to put it on for the kids. I built it up ahead of time, going on about how this was one of my favorite movies as a kid and how “they just don’t make them like this anymore” and “wait till you see this!”. As I loaded it into our first generation Xbox, all kinds of memories of my childhood flashed across my mind. I nestled the kids on the couch and cranked up the music. That got their attention. I even read the opening sequence “A long time ago in a galaxy far, far away..” and continued reading, my voice taking on the tone of a passionate member of the Rebel Alliance out to put an end once and for all to the dreaded Death Star. I saw it enough times as a kid to still recall most lines by heart and I found myself in moments of giddy nostalgia, all the time glancing at Emma’s eyes as they danced all around, sometimes themselves seeming in another galaxy far, far away. But I knew better. What is she thinking about all this? I didn’t want to interrupt the movie with a keyboard in her face. I couldn’t wait to ask her if she recognized a few phrases that Jared always uses around the house like “What kind of talk is that?” in his pretty darn convincing Luke Skywalker impersonation.
I remember there was a time when I thought Emma would never sit down and watch a movie with me like this. There was a time where I wasn’t really sure if she understood what was happening all around her. Her actions would often speak otherwise, but appearances can be deceiving as I now know well. There was a time where I thought that I would never be able to share these bits of my childhood with her like other parents did. But as I now know and constantly find myself hammering into my own thick, forgetful skull….
Never say never!
When it was over, I still felt all the magic I had when I first saw it all those years (decades) ago. Hayden had snuck away with the ipad upstairs long before. I would turn him into a fan, I told myself. All in good time.
Me: “What did you think Emma?” I put the keyboard in her lap and grabbed her shoulder for support, periodically squeezing her hand in between letters.
Emma: Really terrific
Me: “Isn’t it so amazing! Ugh. I just love these movies. And you know what?! There are two more!!! Isn’t that exciting!”
Emma: Yay
She tried to get up, but I forced the keyboard on her again, poor girl.
Me: “Sooo, who was your favorite character.. Luke Skywalker, Princess Leia, Han Solo, Chewbacca…”
Emma: Han Solo
Of course!
Me: “Yes. Me too Emma. I love him. He was always my favorite.” More like, I had an insane crush on him.
…………
A week later, during the second film, The Empire Strikes Back, I felt myself engulfed, same twinkly eyes shining and glancing over at Emma throughout. Prompting and coaxing her to “C’mon Emma.. sit back down” when she got up to leave the room during the movie when her body just needed to move. Yoda was training Luke in the ways of the Force. Luke had tried and failed to lift his ship from the thick bog by way of the Force complaining that it was too big. Yoda had told him “unlearn what you have learned”, a great classic Yoda line. Luke huffed away and Yoda closed his eyes and proceeded to lift the giant ship out with a wave of his small green hand and lay it softly on the bank. He delivered another small line at the end there that I didn’t remember as a kid, but it now struck me in an unexpected way.
Luke: “I don’t believe it!”
Yoda: “That is why you failed.”
When I think about belief, it’s hard not to think about Emma. My God, anytime I have a doubt about believing, I just look at her! Yoda’s line also made me recall the parable Jesus told of the mustard seed in the Bible.
“I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there’ and it will move. Nothing will be impossible for you.” – Matthew 17:20
Watching the movie and looking at Emma, I wanted to cry all over again as I did that day that she first communicated with me. I wanted to get down and thank God again that I could share this simple moment of childhood glee with the child that I wasn’t sure I’d ever really know. How many times had faith lifted me out of that bog time and time again when all seemed hopeless and impossible?! There have been a lot of things that I have lost over the years. I’ve lost sleep. I’ve lost patience. I’ve lost my confidence. I’ve lost heart. I’ve lost dreams. I lost my ability to think straight. I’m pretty sure I even lost my sanity more than a few times. Looking backward and forward, I’m not really sure of any of the choices that I’ve made or anything that I have or haven’t done for the kids. The only thing that I ever really did – and I did it with all of my heart – was just believe. Thank you God for that gift above any other! I know deep down that it will never fail me – a heartbeat pounding the truth again and again….
All things are possible!
Me: “So what did you think Emma? Pretty intense huh?” The credits were rolling. Han had been frozen and Luke had lost his hand and discovered that Darth Vader was his father… (spoiler alert?)
Emma: “Really wonderful drunk with yearning to know what will happen to Han”
Me: “Yes, I know!!! Well, we’ll have to see”. I smiled at her choice of words.
Yes, Harrison Ford can certainly have that effect on a girl.
After I tucked Hayden in for the night, I sat on the couch with Emma. Jared’s working nights now and so it was just her and I. When’s it’s quiet like this, it’s the perfect time to grab the black keyboard, cord dangling free, and try to have a chat with her.
These days, it’s not so easy to find those moments. Emma would rather spend time in her room with the door shut watching videos on her ipad or playing with her toys, arranging them here and there around the room. I wonder what she’s thinking and imagining with those little figurines and a part of me wants to play too. She now knows how to say “go away” in her best voice and since she’s using her words so nicely, how could I not comply. And these days it’s hard to get her to type – or want to type, that is. She seems very preoccupied and it makes me wonder how I used to get so much out of her. What happened to all the mother daughter sharing that we used to have? And when she does type, I’m not surprised when it begins with a “you -“. Oh great! think. What’s it going to be this time? But still I support her arm lightly, barely touching her really, and patiently wait as she slowly types out each brutal word. Then I can reprimand her for her disrespectful comment.
All in all, she’s just really growing up.
Yet everyday we still have a fleeting moment where I pull out the keyboard and scurry after her as she flits around the room (probably to get away from yours truly). May 29th marked the two year anniversary of our breakthrough with Emma. She was nine years old and I finally had my first real conversation with her. What a life changing moment that was! So even when she makes a sarcastic remark, a little part of me cries tears of joy inside.
But getting back to tonight’s chat on the couch….
Me: “Emma, you sure had a rough morning, but I guess you recovered okay, huh? Why were you so upset?”
Emma: I felt especially tired
Me: “Yeah, I figured you might be tired.”
Emma: elementary school is hard
I smirked and silently wondered whether there was sarcasm in her words.
Me: “But are you sleeping a little better in this house?”
Emma: yes
This is the first week in our new rental house (hallelujah!!!!) and being here makes me wonder how I survived this past year in the two bedroom apartment (we lovingly called “The Siren House” because it was right next to the police station). Jared and I slept in the living room to give the kids their own rooms since they wake up quite a bit at night. And so this four bedroom with a huge yard feels like a dream. And it’s so peaceful here.
Me: “Hey Emma, did I ever tell you how you did on your Star testing? You did really well. What do you think you did better in, math or language arts?”
Since Emma was typing so beautifully tonight and with such speed and interest, I decided to just fire off as many questions that came to mind. I recently got her testing back from school. It’s basically the state performance assessment and in reality, maybe it should mean more to me, but it doesn’t. All students take it although hers is a special alternative test. I must admit, I’m not sure how they test or on what.
Emma: Usually I don’t test well because of the autism
Oh God. It was time to put on my super-parent hat and try to find some really perfect words to say. But I always just seem to ramble.
Me: “Yeah, I know you can’t show them all you can do. But you know what, Emma, tests are not everything. We know that right? Plenty of people are horrible at tests and especially sometimes the really smart ones. I don’t know. Tests are not for everyone. I studied many things and took many tests and I honestly don’t remember a lot of what I learned. But you did well. And by the way, you scored slightly higher in math.”
I rubbed Emma’s head and watched her face go through an array of funny facial expressions, sticking her tongue out and doing all sorts of things with her large blue eyes. She’s been having a lot of compulsive and odd behaviors lately and these behavior come and go and change.
Me: “Emma, are you doing that on purpose? What are those faces?”
I kept my voice chipper, but even as I asked it, I knew that it was most likely one of those body movements that she couldn’t control and therefore basically a stupid question. I’d asked her this so many times you’d think I’d get it already.
Emma: just living in the moment
HA!!! I literally laughed out loud!
Me: “What?!!! Haha Emma!! You are too funny. Living in the moment? Like the Jason Mraz song?”
Emma: yes
Me: “Wanna hear it?”
Emma: yes
I put on the song and watched Emma rock and sway and dance across the room. She’s been smiling so much this week in the new house. In fact, I’d say she’s had the easiest time of it and I love to see the big smile across her face. Today she even ran in the rain in the back yard like some magical fairy. I sang along to the song and tried to get her attention to dance with me, but before I knew it, she had taken flight up the stairs. Just living a new moment, I guess.
“I wish i could be there, Granny. I really do. I’m so sorry”. my voice was already unsteady, but Granny and I always seem to end up crying together. We always have. Mom has never been overly emotional in the slightest, but if the three of us are sitting on the front porch drinking a glass of wine and talking about the deep things of God, you can be sure that Granny and I will be shedding some tears before our glasses are empty.
“I’m having my funeral,” she said matter-of-factly. “I told everyone, ‘I don’t want to be buried or anything!’ Everyone’s coming over and we’re just going to be together and that is going to be my funeral.” Her voice sounded strong and upbeat in her Georgia accent, although I could hear a tremble in it. Any minute we would both be crying, I could feel it. When she had told me last summer on my visit to Florida that I might not see her again, I don’t think I really believed her. She looked fine then, although I knew she got winded easily. I didn’t really think the cancer would make such an impact in such a short time.
“God, Granny, I just love that idea. I’ve been thinking about you so much lately. I really need to be there.” I did need to be there. I just felt this abundant urge to be with these people that I’d spent way too much time thousands of miles away from. I wanted to feel my mother’s soft hand on my forehead. I wanted to hold hands and sing and pray with my aunts and cousins and hug my granny instead of sniffling into the cell.
We were both crying now. It was inevitable, after all.
“I know you do, honey. But we’ll all be together some day. The Lord is taking me and I’m going home.”
I couldn’t help but think of my brother, Tim, in that moment. The thought of someday seeing him again has always made my heart leap with a strange kind of surreal joy that’s hard to put into words.
When we were very young we stayed with Granny and my aunt Molly for a while. I have a memory that comes to mind. The phone rang in the middle one night and what brief recollection I have is that of the adults in my family crying, hands in air, tears down cheeks. My great grandfather in Georgia had passed away. He was a good man I am told, and I wish I had memories of him the way they did. He was a rock in the family as solid as they come. I heard that he and my great grandmother did whatever they could for anyone. I heard that my great grandfather knew the Bible by heart and would read it in his rocking chair everyday. I have brief visions of running through the rows of their garden in Joneborough, Georgia – so green and lush, tilled in the red clay. They were good people, their love and faithfulness to God seeping into the fabric of their family for generations. Watching my granny loudly praying and weeping that night will never leave me. There was something so powerful about it. I believed her voice could be heard up in the heavens. Or maybe God was with us in that room, very, very close.
I have early memories of Granny and I spending time together and lately they have played heavily on my mind. I was the oldest grandchild and we seemed to have a love of the same things. Even at an early age, I loved to go out to eat and she would take me to the mall and we’d walk around. She had a book on sea shells and we would walk the beach early in the morning, hoping to spot a perfectly intact specimen before someone else snatched it up. She was never far away in my life.
As I got older and moved away eventually to California, we didn’t get to talk as much. She had many grandchildren after me, fifteen in all, and eight great grandchildren whom she adores. She’s always read the newspaper and would often mail me clippings or coupons from magazines that she thought I might be interested in. I’ve always felt her love.
And my granny has a sense about things. One night here in LA I got locked out of my apartment after work and walked several blocks to a pay phone. A man came out of nowhere and tried to talk to me. When I walked away he grabbed me and chased me for several blocks and I barely got away from him. Strangely enough, it wasn’t the first time I’d been chased down on the streets, but this was just as traumatizing if not more so. There was no one to help me. Don’t ask me why I was at the pay phone or why I didn’t have a cell. Let’s just call it total stupidity. You’ll find me now an almost overly-cautious pedestrian. A week or so later, I found out that my Granny had a dream that night that woke her up. She dreamed I was in danger and that someone was chasing me. She woke up grabbing the curtains and calling on God “Send all your angels to watch over Sabra!!” She was very shaken. It was at the very same time on the very same night I was chased down on that dark street. In a very lonely time, knowing this made me feel so protected and loved, like I was home. It was just yet another amazing story of faith and God’s power in our family.
How it seemed to always bind us together.
Now, her body is brittle but her spirit can’t be stopped. She is still doing what she loves when she can despite the pain, exhaustion and weight loss. They still go out to eat and visit Goodwill for a good bargain. And I do wish I were there, but I know that she is surrounded by love. It’s a love that’s greater than cancer or grief or fear. And I can feel that love all these miles away. I think I can feel it because it doesn’t come from a place or a time. It doesn’t come from all the things that have been said and done. It’s His great love that brings us all together.
I decided to do a slideshow for Granny since I couldn’t be there. Of course, I cried the whole time I put it together. I scraped as many photos of our family as I could and some I had never seen before. I briefly face-timed with my mom and Granny flashed across my iphone screen. Her voice was nearly gone and her body was very frail. As soon as we saw one another, the tears came again. I couldn’t stop crying. I hoped she knew I wasn’t crying because of her physical appearance. (She’s still beautiful and always will be). I hope she knows that it was all about the love.
I love you Granny and will continue to pray every day! You are always in my heart.
“God is love. Whoever lives in love lives in God, and God in him” 1 John 4:16
I didn’t have any tissue so I tore my crinkled Starbucks napkin in half and gave one half to my friend, Candy. I don’t know why I didn’t expect to cry. After all, it’s not everyday that you watch someone give a presentation to the whole school about your kids! Well, the presentation wasn’t about my children in particular, but it’s hard not to feel so personally connected to a presentation all about special needs kids. And especially when both your children happen to have autism. It was relevant too, since our school has five classes that make up the autism program that Emma and Hayden are in. Our kids have a lot of contact with the general ed classes because the school has been so great about incorporating socialization. Us moms never really know how it is for our kids and especially since most of them are nonverbal or have low communication skills. We don’t know how the other kids feel or what they truly know about our kids, who may act differently or have a different form of communication. Our PTA was wonderful enough to hire a specialist to come in and give an inclusion assembly to show the general ed kids how they could be a better friend to those with special needs and get them to open their minds to how it would be to have a disability.
“Kids with autism are kids first, They love ice cream and want to make friends just like you do” he told the other children. I hoped nobody saw the tear sliding down my cheek. The kids seemed to hang on every word and were very engaged, which is not an easy task for a group of elementary students. And when the presenter flashed the picture of Sahoshi Tajiri, the creator of Pokemon up on the projector and explained how he has a form of autism, well, you can imagine the gasps from the young audience.
“Yes, that’s right. The creator of Pokemon has autism. But it didn’t stop him from creating one of the most awesome characters ever! In fact, it was probably tough for him to make friends when he was little. He spent a great deal of time drawing, and he was very good at it! I bet now, everybody wants to be his friend!”
The kids were dumbfounded. Now all of us parents watching knew that the list of famous people with disabilities in the presentation didn’t necessarily represent our kids. There were no nonverbal people in the bunch like Tito or Sue Rubin. I knew that when the presentor told the kids to “go up and strike a conversation” that it might not apply to all our kids in quite the same way since most of them are nonverbal. But even so, I like to believe that those children were all listening and really re-thinking what they knew about their buddies in the autism program. The ones who had no voice. The ones who maybe didn’t seem like they wanted to play or make friends. The ones who had “odd” or “inappropriate” behaviors. Oh, it was very emotional to think of those kids hearing this. And our kids were there, too. I wondered what they thought. I wonder how it felt for them to have a whole assembly dedicated just to them.
Was this man the voice that they didn’t have? It felt like it was their time to shine.
After school, I was at the computer and Emma came up to me with a picture in her hand. It was a PECS card.
“Where on earth did you find this, Emma?” We haven’t used PECS this way in a while. Her eyes were smiling. I grabbed it and started laughing.
Of course, I had to get her some chocolate.
Later on…. She reached up for the crayons I keep on top of the fridge so they don’t get eaten by Hayden. I asked her to draw a sun for me. Then she wrote her name and I couldn’t remember having seen it written any better…
Then later…..
She brought me yet another PEC pic! This time of fries. So of course, I had to call Jared and tell him to stop by and get some on the way home…yeah, yeah McDonalds, the “good” kind.
By then, I had found her stash of PECS. They’ve always been accessible but she hasn’t used them like this in a while. She just seemed on fire, doing so many things I don’t usually see her do. She was so lit up!!
Me: “Emma, what’s gotten into you? You are full of it today!”
She reached out to the nearby keyboard and even her typing, which had been difficult lately, seemed much better.
Emma: the fantastic info the guy gave today really lifted my spirit
I let this sink in for a moment.
You know, I knew that the inclusion assembly would be great for the other kids – the “typical” kids. I knew that it would help them understand our kids better. I knew that it might help them be better friends to our kids and try to understand and accept them more. I knew that it would let them know that some pretty amazing people out there have disabilities and that those differences have helped them become the successful people that they are. Because of, not despite their differences….
But I wasn’t really expecting this – that Emma and all those other children with autism would hear that presentation and be reminded of how wonderful they are just the way they are, differences and all….. that someone knows how badly they want to make friends and now their whole school knows it too!…that their peers now know that they want the same things as every other kid, to fit in and belong… that there are other people that have autism just like they do and they are doing some pretty amazing things.
Reading Emma’s words typed out reminded me again of the importance of encouragement for these children. The power of saying just little things like “You can do it!” and “I believe in you”. Words like these can light up the lives of children with special needs. A little encouragement can make a huge difference!
Today is World Autism Awareness Day and tonight I’ll be participating in a local Light it Up Blue event to promote autism awareness. I’ll see many kids and moms I know and look at all the artwork submitted from kids with autism, including one of Emma’s poems and her Reflections story, which won 2nd Place in her school! I’m thankful to live in a community that shows support like this in such a positive way!
Next time you get an opportunity, don’t forget to tell someone with autism how great you think they are!!!!
Different not less!!!
I sat at the computer furiously pounding away. What was it?! I had spent the last half hour trying to recover my itunes password, which had mysteriously changed somewhere up in the “cloud”, or whatever it is. Everyday it’s something new and today it happened to be this. Why do things keep changing up on me?
Even the weather has been crazy. Isn’t it January? I found myself running out the door bundled up only to realize is was a balmy 80 degrees. This is how life seems lately. There have been so many ups and downs twists and turns, that it’s brought that “live for the day” phrase to a whole new level. And I’m not just talking about the weather. Life has been very hard on us and the people that we love. Stress and fear weigh heavy on me. I am still not sure how we will make it through this month. I have no idea how the kids will survive if something happens to me or Jared. My mind can only handle so much, which is why I usually leave the very long-term worry up to Jared – he’s got it covered through the next twenty years.
I pulled my fingers off the keyboard. I was utterly depleted.
I closed my eyes and rested my face against the chair.
I drifted up and vaporized into a cloud. I crumbled into thousands of particles and blew away….
When I was a child, I remember one warm summer night as I lay in our pasture back home. I cupped my hands around my face and let the stars fill my entire vision. I could find no space free from their light. The strangest feeling came over me in that moment. It was as if the veil of this world had lifted ever so slightly and all at once I felt the majesty and infiniteness and power of it all. My little life seemed so small and fleeting and I became almost afraid. It was too big, too overwhelming. Yet somewhere inside I felt a light shine brighter than all those stars and I knew that I was very loved. I’ll never forget that night.
When I opened my eyes, the world around me was still the same. It still felt like summer in January. I still didn’t know my itunes password. Emma and Hayden still had this thing called autism and they didn’t come up to me and start talking with their mouths in full fluent sentences.. As far as I knew, we were still living in this two bedroom apartment we call “The Siren House” because it’s right next to a police station.
But I had found a place to rest again. It had washed over me as it did when I was that child staring up at the night sky. But it wasn’t that pasture from my childhood daydream and it wasn’t somewhere out in the Milky Way. I found it far beyond those infinite stars and galaxies, light years beyond all knowledge and understanding. I found it planted somewhere deep within, unchanging and unfailing as it searches out all heartbreak, joy, pain, and love – breathing through all seasons of my life and remaining to my very last. Nothing will ever be able to separate me from it – not death or life, not the present nor future, nor any powers, or height or depth or anything in all creation…..
Why should I be afraid? Why should I worry? In my darkest hours I will find rest. In my weakness I will find strength. For the same great Creator who splattered those magnificent stars across the universe, is the very same God who dwells within my heart.
I really need a better system. I stood in the kitchen staring at the refrigerator with all the tattered sheets of paper held up by magnets. They have hand-written on them “I want juice”, “turn off light please” and “I want videos”. We keep adding to the collection whenever he makes a new request. Juice is the main one we use so that is the one that isn’t jumbled up with the others under a heavy duty magnet. I realize there is a tidier way to do this, but, as any friend of mine could tell you, organization has never been my strong suit.
Hayden will come up and say “juice”. And rather than say “Say it better!”, we will direct him to the haggard paper where he will proceed to read the entire sentence out loud.
“I want juice, please.”
“Okay!!!” we follow it up with praise and a cup of juice which will be gone in no time.
I’m not sure if this method will really spur his language into high gear, but it seems to really help and I try to remind myself often how amazing it is that he is able to read these signs out loud!
But still, lately it’s been tough. At the end of the summer, his language was really taking off. He seemed so much more engaged and happy. And I was feeling so happy and hopeful. I was able to finally get him some mainstreaming in school, which would give him that socialization that I’ve so desperately craved. Now, he’s barely able to be in his mainstream class at all. He seems to be on a downward spiral.
Why is this happening? What should I do now?
Today I cried on the phone to my friend Renee, who reminded me again how our kids cycle. Of course, I thought. I’m sure that’s what it is. I’ve been through so many of these cycles when the kids regress after making such great progress. My mind knows it’s a bump in the road, but my heart can’t help but feel devastated.
Sometimes when people ask me how the kids are, I don’t know what to say. How can I explain the ups and downs? It’s three steps forward and two steps back, but always moving steadily forward. It’s filled with very difficult times and very hard decisions. I sometimes feel like someone else would have been a better mother to two kids with autism. Someone more organized, more brave, with more money and a more stable situation.
We will always be switching things up, trying new things. I know that when the kids learn one new skill, another will be waiting. I know that this might not ever end. I know that there’s a possibility that I may always be at Emma and Hayden’s side, supporting them.
Even though I may not have all the answers, I do know one thing to be absolutely true. I will never give up on my children. I will always be there for as long as they need me. I can’t imagine spending my life any other way than being there every step of the way, through the good times and the bad. They have taught Jared and I so much and have brought out the very best in us. They have given our lives such a deep richness. They have taught us patience, hope, love and a deep appreciation for all the small things in life. I know that we’ll hit many bumps along the way, but every moment with my children is a gift from God. I store up our days like a treasure in my heart.
I couldn’t help but think of Emma and Hayden when I watched this new video by Jason Mraz.
I won’t give up on us, even if the skies get rough, I’m giving you all my love, I’m still looking up!
My hand supports Emma's arm just below the elbow
In light of much skepticism surrounding FC (Facilitated Communication), I felt compelled to share another side to the story. It’s a side that needs to be heard in the same way that we all need to be heard. But for many, that voice may not be quite as loud because it’s not a voice, but a word typed out on a keyboard. Even so, if we truly listen, these words can change the world.
I wake up this morning to an email from my awesome sis in-law, Dena. It’s an article about a boy named Jacob, who uses facilitated communication just like Emma. Another wonderful story of a person finding their voice despite being unable to speak with their mouth. His story sounds so similar to Emma’s that I get giddy all over again.
For Jacob, facilitated communication means that someone needs to touch his elbows while he types on a computer or his iPad. “He says that if we don’t touch his elbow, he’s thinking about a Disney movie or people in his life,” Hanson said. “He has to turn off this other noise that’s going on in his head in order to type. Someone touching his elbow helps Jacob focus on what he wants to type.” ……….
The article closes with some wonderful words of inspiration from Jacob.
“For people with autism, every day is an unending struggle to remember that we are not so different after all. You can help by smiling at us, by welcoming our presence and encouraging our participation. In the end, it comes down to recognizing God’s image in every single human being.”
Jacob, now 19, doesn’t feel like he’s far from reaching his goal of complete independent typing.
Thank God, I thought. These are the stories that kept me going before Emma began communicating through typing. I soooo needed to read this. This story put my heart at ease in light of the dark place it had been just the night before. In researching for this post, I’d come across too many negative comments and attitudes towards FC.
For those of you who might not know, FC is the method where a facilitator will support a child’s hand or arm while they type. The goal is to fade back, working toward independence. For kids and adults with autism, who are nonverbal and who may have a hard time with motor planning or feeling their body in space, this has been a useful method to open up the lines of communication.
I use FC with Emma technically, yet I didn’t really think about the methodology at the time we began. I had been studying IPM (Informative pointing method) which incorporates supports initially and we just sort of had our breakthrough, during typing practice. And oh, what a life changer it was!! I found out that my daughter’s favorite color was yellow. I discovered she has a deep belief in God that put my faith to shame. I couldn’t stop asking her questions and I even started a blog to share all about this exciting journey into communication we were experiencing. As far as FC, I have faded back quite a bit over the last year and I know in my heart that one day Emma will be typing without any supports from anyone.
I really believe that no two communication processes can be exactly the same and you can’t put a time frame on it. It’s a journey for each individual.
A tragic story, a 0ne-sided story
I honestly did not realize that facilitated communication (FC) had such a bad rap. Not until I watched 20/20’s recent segment on FC with the caption “Miracle or NIghtmare. The segment which aired on January 6th on ABC 20/20 told a tragic story of a family in Michigan ripped apart through allegations that the father had sexually abused his daughter who has autism and is nonverbal. The daughter herself was reported to have typed out the allegations through FC with the support of a facilitator. The case was dismissed in court, but not before implying that facilitated communication was a completely invalid method of communication. It was implied that it is nothing more than a manipulation by the facilitator – a kind of subconscious ouija board effect – and that the girl was not in fact communicating at all. This is not the first time that FC has undergone serious skepticism. It’s been stories like these, in part, that have given FC such a negative reputation. Don’t get me wrong. I feel so sorry that a family would have to go through any such trauma. But why denounce the entire method and make it seem like an atrocity? A speech pathologist and critic of the method was asked in the 20/20 article as to why he never continued his research on FC…
“It’d be like suggesting that we continue to study cold fusion or bloodletting,” Shane said. “When it’s over, it’s over.”
Really??!!!! Why such a one-sided story about FC?!
Where were the success stories proving FC to be a valid method of communication even leading to independent typing? There is at least hundreds of people who effectively communicate this way! This article would have you believe there were none, but that simply is NOT true.
How many mothers out there or professionals will see shows like these and think “I thought so!! I thought these kids weren’t really communicating. I just knew it. It’s all a fake.” This just breaks my heart because what America didn’t see were all the cases of FC being a wonderful tool that helped a child be able to communicate when nothing else worked. They didn’t see the cases of kids and adults who started with FC and went on the communicate independently. Are you going to say that those cases are a fraud? This is the real evidence that FC can and does work, and the truth isn’t always found in a tragic, one-sided news story.
I was not the only one who thought it bias. The Institute of Communication and Inclusion in Syracuse noted it on their site as well. Here’s the statement in its entirety (that you should totally read). I’ve listed only a couple of the great points made in argument against the segment’s one side report:
Perhaps most importantly, it failed to alert viewers to the fact that there is an extensive body of research literature in which the method has been validated, including research that involves video eye-tracking showing that the subjects gazed at letters sequentially before ever moving the hand to type them (Grayson, Emerson, Howard-Hones & O’Neil, 2011), linguistic analysis demonstrating that the individuals with disabilities employ significantly different patterns of word use than their facilitators and that they were different from each other even when sharing the same facilitator (Zanobini & Scopese, 2001; Tuzzi, 2009), evidence of speech before and during typing (Broderick & Kasa- Hendrickson, 2001; Kasa-Hendrickson & Broderick, 2009), and message passing, where individuals demonstrated authorship by conveying information that was masked from the facilitators (Cardinal, Hanson, & Wakeham, 1996; Sheehan & Matuozzi, 1996; and Weiss, Wagner & Bauman, 1996). In contrast to the message passing test shown on the ABC story, in each of the research studies noted here, individuals with disabilities demonstrated the message passing ability only after multiple practice sessions; it is possible that with familiarity with the process of this assessment, the individuals became desensitized to anxiety associated with being so assessed.
And it neglected to mention that the one scientific study that has been conducted on the facilitated communication and allegations of abuse found that the patterns of disclosure of abuse via facilitation follow precisely the pattern seen with children who speak, showing that in approximately 1/3 of the allegations there is corroborating evidence including physical evidence, in 1/3 of the allegations it is unclear whether there is sufficient evidence to proceed with legal action, and in 1/3 of the cases the allegation proves unfounded (see Botash, Babuts, Mitchell, O’Hara, Lynch, & Manuel, 1994).
As I viewed the segment on ABC, I kept waiting for some shred of objectivity in this story. Even if they had stated that FC may not work for everyone or that it could be misused, that would have been better than denouncing any validity whatsoever and making it out to be some kind of misleading miracle therapy that simply doesn’t work at all and can even be harmful. The saddest part for me might have been when her parents conveyed how they had wanted to believe so desperately that their daughter was communicating, now feeling like it had all been a lie. It seemed an especially tragic ending to this already tragic story.
I sat there horrified and when the show was over, I felt sick. I am so thankful that I didn’t see this show when we had our breakthrough with Emma or even before. I may have never tried it and may have never heard her voice at last.
Because Emma hears EVERYTHING in this house even when it seems she’s not listening, she is quite aware of this skepticism and I wish that she weren’t. But I know that she is strong in who she is.
Emma via keyboard: Trying to understand why people would judge something that is so true to the people who loudly use it.
The Real Deal
So here’s the real deal, people – If you don’t believe that FC can work in some cases, you are wrong. Today, I’ll introduce you again to Sue Rubin. 
I first saw her in Gerardine Wurzburg’s documentary Autism is a World. What I had forgotten until I started researching for this post, was that Sue began with FC. Her parents had heard the controversy over it and were reluctant. But her teachers persuaded them to try it. Her world opened up at last and within five years, she was typing independently, as is stated in her speech at the 2003 Autism Conference for The National Autism Society. She went on to go to college and now gives speeches, that she types out, at conferences and is a huge advocate for autism and communication. I know this has been a llonnnngggg post. But please read what Sue Rubin has to say. This information needs to be heard. It could give a child, like Emma, a voice.
I will never stop supporting communication for those with autism. I will never stop believing in what is possible!
Thank you so much, Sue!! There is a clip below from Autism is a World.
Facilitated Communication – The Key to Success for a Non-verbal Person with Autism
Autism Society of America
2003 National Conference July 16-20, 2003
Hello. My name is Sue Rubin and I am glad to be here today to tell you about my life and facilitated communication. Typing is very slow so I have prepared my talk at home. When my facilitator has finished reading it, I will answer questions so you can see how I type to communicate. I know many of you may have read that facilitated communication is a hoax and that the facilitator was the person communicating. I hope this story of my life will change your mind. We people who use facilitated communication all have interesting stories and mine is just one of many.
The story I am about to tell you sounds fantastic, but I can assure you it is true. I can also assure you that many people with autism who use FC are also having life-changing experiences. My own story starts with a very autistic child who was quite aggressive toward others – biting, pulling hair, throwing my head against someone’s body, etc. I was also self-abusive – head banging, throwing myself against walls, biting, and quite ready to throw myself on the ground. I was so autistic I was in a separate world. When I was four my IQ was 50, but as I got older it went down so by the time I was 13 it was 24. When I took these tests I was totally unaware of what was expected of me. The tester spoke to me but she quite sadly could have been speaking a foreign language. Sounds always went over my head and I definitely wasn’t able to complete any tests. Fortunately, we no longer have to depend on IQ tests when we want to see how smart a person is.
From the time I was an infant until I was in high school, I went to severely handicapped special education classes on regular school sites and was mainstreamed into regular science and other classes. The intention was social but I was also exposed to grade level curriculum. My own special education curriculum was functional because no one thought an academic curriculum would be useful or even possible for me. Not only did I have horrendous behavioral problems and lack of language, I was awash in autism and totally dependent on behavior modification to get me through the day. The speech therapists tried everything they knew to get a communication system working for me. I couldn’t even use a system based on pictures because I couldn’t point or select pictures properly. Behavior was my only method of communication and that got pretty ugly sometimes. Whittier was always in the forefront of special education and I don’t want you to think I had an awful educational program. We lived behavioral mod and positive behavioral supports. We practiced finding antecedents, behavior and consequences. My school records are loaded with functional analyses. However, I was still a mess.
In 1991 when I was thirteen and in an eighth grade severely handicapped class, the school psychologist and speech therapist contacted my mom and suggested trying facilitated communication with me. My mom had heard about the ouija board affect and had read negative things about FC. She said she didn’t want them to try it, but they were so persistent, she agreed and they came to my house. I was as amazed as they were when I could spell parts of words with someone pulling back on my wrist. The speech therapist was successful with all of the students in my SH class, as was the classroom teacher. The teacher typed with me at school everyday and my mom typed with me at home. I slowly progressed from single words to phrases and sentences and paragraphs. During this time it became apparent that I had been learning from the mainstream classes and my older brother’s homework, and storing the information in my head. My brain was so disorganized it took months for me to be able to organize information and retrieve it. It took even longer for me to be able to clearly express original thoughts, not just short answers to homework.
When the year was over, we decided I should go to Whittier high school where they already had a full inclusion program. The difference now was that I would be taking academic classes toward a regular diploma. We chose honors and advanced placement classes to avoid taking classes with a lot of cooperative learning and behavior problems of non special ed students. We started with three classes and worked up to five classes each day. The transition to high school was very difficult for me and I often had to be removed from class. The psychologist was on call and often rushed to the high school when I was having a melt down. I really believe that being in regular classes and having to spend hours doing homework everyday and on the weekends was what enabled me to overcome a lot of the autistic behaviors I was constantly battling. After a while it became easier and easier for me to stay in class. I became relaxed and spent less energy fighting autism.
… click here to read Sue’s entire speech. It is a MUST read!
After reading a chapter out of Farmer Boy, I put the book back on its place on the dresser and plopped back down on the bed next to Emma. Thanksgiving was coming up and I couldn’t help but feel very thankful for so many things and even for this – getting to finally read the Laura Ingalls Wilder series with Emma for the first time. I had somehow missed reading it as a kid and I was now just as giddy as any eight year old dreaming of horses and life on a farm. Jared sat on the bed, too, which isn’t always the case these days because he’s working the night shift. Emma lay there, a pleasant smile on her face, all tucked in the blankets.
He and I startled rattling off all the things we were thankful for. To be honest, I can’t remember what they were. The usual things like family and friends…and probably food, knowing me.
“What are you thankful for Emma?” Jared and I looked at Emma as she stared off with a smile in her eyes. We knew she couldn’t answer in that moment because the keyboard wasn’t close by. But we always ask her questions anyway, just wanting to include her I suppose. She’s always listening.
Emma: “Gah”
We looked at her and each other. Did we just hear that?
“Did you hear that? I think she just said God!” Jared was the first to speak, his eyes wide in surprise. Emma had definitely said “Gah”!!
I had to know. I flew out of the room to get the iPad and held it in front of her. Emma was laying in bed looking at the ceiling and she had the sweetest grin on her face. I grabbed her arm and she reached out to the letters.
Me: “What did you just say, Emma? Did you say ‘God’?”
Emma: yes
Me: “Oh, Emma! Listen to you. You are really starting to say words!! I’m so happy!!!” I couldn’t contain my grin or my eyes, which were tearing a little at the edges.
Jared and I looked at each other shaking our heads. She had recently begun to say small words. She already had a few – “yes”, “Dora” and “juice” that she used and practiced, mostly with prompting. And the way that she had been delivering these words was with great effort and purpose, pushing herself to try to articulate her mouth like never before. And every time I see her do it, I think about all the times she’s told me that talking is her big desire. It’s the one thing that we always pray for at night. It has always seemed like an impossible dream, even when I assured her it wasn’t.
She reached out again to the iPad.
Emma: I am so thankful for an appetite for his grace in my life
When she had finished typing it was a quieting moment. Inside I gave thanks that no words could express. I was not surprised that his grace would be the thing which Emma would be thankful for. And not just thankful for grace, but an appetite for it – a hunger, a desire, a confidence to never give up because God will never give up on her. Her appetite is deep and inspiring. She had said “God” with her own lips and I feel certain she will say more. I have a feeling it will be more than I have expected. I am starting to truly believe that there is nothing on this earth that is not possible.
Yes, I too, am thankful for His grace in my life.
I’ll never forget the first time I saw Soma. She spoke at the first autism conference I attended. I didn’t know much about her at the time. Emma was around three years old and I was feeling very desperate, very overwhelmed and extremely devastated by her diagnosis and my lack of anything I could seem to do about it. Her words had all fallen away and she rarely looked at me. There were a lot of speakers at the conference and a lot of information – it’s hard to keep up with the bombardment of information out there about autism. It’s an ever-revolving door of ideas and treatments. But Soma was who I remembered most that day.
She had created a method called Rapid Prompting Method and had a video of a girl much older, but similar, to Emma. She was non-verbal and had some aggressive behaviors. Watching Soma work with her and get her to communicate was fascinating and was another little seed that was planted in my mind.
Sometimes people ask me how Emma began communicating or what method we use. My mind goes immediately to Dov. It was his mother, Portia Iversen, who brought Soma and her son, Tito, over from India. Portia had heard of Soma and Tito and was desperate to get Soma to the states so she could meet them. Portia and her husband were on a mad search for answers and had subsequently founded CAN (Cure Autism Now). When she heard about Tito, her mind was blown. Here was a child just like her son Dov – and he was communicating these deep and genius insights and writing this amazing poetry. How could this be??!!
And yet in spite of the monumental achievements of CAN and the fact that I had become well versed in matters of science, I found myself confronted by something I was entirely unprepared to understand: a boy named Tito Mulkopadhyay. – taken from Strangeson / Portia Iversen
Soma’s method of pointing to letters turned me on like a light bulb. It just made sense to me the same way it must have to Portia. Watching Soma work with Dov as he pointed out his first words on a paper letter board sent a thrill of hope and encouragement through me. I was a sobbing mess at the computer. I downloaded the free IPM(Informative Pointing Method) method booklet on Portia’s website and began studying it. I just knew that this was a door that was opening. I had also just read Tito’s incredible book How can I talk if my lips don’t move .
I felt like God was slowly watering my seeds.
When I think of it, Emma was there too watching that video. She was there listening to me read Tito’s book. She was always there and I know that she was listening. I knew that it was encouraging her, too.
And then, to my complete amazement, it happened for us. The very next day after I watched Soma and Dov, I would experience my own miracle as I watched Emma type out on the keyboard for me for the very first time. It was during our daily typing practice to type her name out. I had my hand lightly on hers and I began to ask her questions. It seems so simple, yet it was the most incredible, life changing thing to watch her type out yes when I asked if she wanted more candy. It was like a connection we had never had before.
This video from 60 Minutes is several years old. Today Soma resides in Texas and runs her non-profit Halo. One day, I plan to take a trip to Texas and take her course on RPM. Portia came out with her book, Strangeson several years ago. From time to time, I check on her website. The most recent post is a much older teenage Dov getting a new hair do. Does he know that I think of him?
I wish I could tell these women and their sons how thankful we are for their contribution to our life.
Emma is still working toward complete independence in typing. I’ve come to realize that even when all our worlds collide, none of us are alike. I am not like Soma or Portia. And Emma is different from Tito who is different from Dov. But we can learn from one another. We all have a voice and dreams which might be the only truth I know about autism and maybe the only one that really matters. If I could lend my voice to say anything to parents and teachers out there, I’d like to say
DON’T GIVE UP!!
Sometimes it seems like there is nothing we are capable of doing for our children. But I really feel that the best thing we can do is continue to believe in them and encourage them. All things are possible with faith, hope and above all, LOVE.
Murphy the Musical 
