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.
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 those..you 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:)
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.
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 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…
“This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:24
