After you typed the first time and in the days to follow, how were you feeling? What impact did you think it would have on your life?
Like I mention in the book I was always using signs and a voice output device of one kind or another that helped me get what I wanted or convey a message so because of that it really wasn’t apparent to me what a big deal it was to type. I didn’t fully understand what I had done until a day or two later. It took time for me to process that part of me, again. I was proud of my accomplishment but did not know how really big it was. It would open a world for me, I really wasn’t sure I wanted to be in. Don’t get me wrong. The ability to communicate my wants and needs is great however with great abilities comes greater expectations.
How has typing changed your life and your relationship with your family?
Now that I’m older I realize how important typing really is, and was for me. Imagine not being able to comment on the simplest things in your life or not being able to describe to someone why you are mad. Typing has given me a big outlet and allowed me to do things that most teachers and doctors told my parents and myself I would never be able to do. I have been able to hang out with typical friends and be treated like I am one of them.
Typing has also allowed me to share my world with my mom and dad. I am able to express at times why I am doing what I am doing and has let me act like a typical teenager. I think I give my parents as much trouble as my sister does at times and love that they listen to my voice. Well sometimes!
What do you want people to know about autism? And about people with autism?
I heard a smart man say recently that autism is unique because people with autism have extraordinary talent that just needs to be molded and encouraged. I believe we all have inner voices that need to come out to the world. It is not fair to give up on us when we haven’t given up on ourselves.
In your bat mitzvah speech, you said that you would like to be like everyone else, but you would miss what makes you unique. What makes you unique?
Wow, that is a really good question, I am able to go in to a classroom and look at a text book for thirty seconds and then write a test and know all the answers. Do I think that makes me unique? No. I am able to process over 30 conversations at one time. Do I think that makes me unique? No. I am not able to talk out of my mouth but can type out my intimate thoughts or dreams or even express my concern or anger to people around me. Do I think that makes me unique? No. I think what makes me unique is that I am me and being me isn’t just having autism. It’s who I am as a person. Just because I might act differently on the outside doesn’t mean I’m not like you on the inside.
What kinds of normal teenager things do you like to do?
All my classmates at school are going to laugh at me but I like going to school and feeling like a teenager. There are days I will stand outside of school and really not want to go in but that’s being a teenager. I like going to the movies and sitting on the couch watching TV. I love going to the mall and just sitting on a bench and watch the world move around me.
What was it like to write a book with your dad?
Since my voice is me typing, writing a book just came naturally. My father has always tried to understand me and when he was writing the book I think it opened his eyes up a little wider. I think the world of autism has finally started to be shared in the last few years and I think this book that my father and I co-wrote allows the reader to see different sides of autism. My father’s words convey the stress, hardship and small accomplishments of a family caring for someone with autism. I also think that my intertwined writing in the book and my chapter opens a big door into autism that many people don’t know or understand.
How would you describe your personality, to a friend?
I’m smart, caring, understanding and really funny. I like cute boys and oh wait you just wanted my personality. Lol.
Tell us about your petition and what you hope will happen.
People living with autism have a hard time doing what typical people take for granted. Imagine a world where you fear going to the park because of the sensory input you have to take in, or the looks you get from people when you start flapping your arms just to process everything that is going on around you. Now imagine having a child that has this issue and feeling like you wish you could do what every other parent can do with their child, i.e. taking their child to a movie or baseball game or park or even to the theater. Well, last year, thanks to the Lion King, this dream came true. Families that have people living with autism were able to take their child to a Broadway show. The show had some minor adaptations to it, however, the adaptations did not take away from the show. In fact, the Lion King liked some of the changes and are using them in their mainstream shows.
I have experienced being an audience member at numerous talk shows on many occasions and it is really fun. My Dream is for Families living with autism to be able to go to an Autism family-friendly talk show day where five well-known talk shows have a autism family audiences.
I believe that lots of people with Autism would want to try it. It turns out my beliefs were right. My online petition is now over 7,000 signatures and counting. I have also heard from a lot of people saying that if these shows do it, they won’t just be helping people with Autism belong but they will be teaching the world about Autism.
What kind of support do you have with your petition?
I feel honored and privileged to know so many people with kind hearts and just a few weeks ago they told me they stood behind me. Holly Robinson Peete who is well known for being a host on the talk and recently a cast member on Mike and Molly came to my side and told me what an amazing idea this would be. Holly has a son living with autism and she knows the hardship of being able to do things as a family. Last year I met a man that blew my inner voice away. His name was Joe Mantegna and he also sat down with me last week and urged the talk shows to make my dream happen. I am just hoping that The Ellen Degeneres show, Dr. OZ, Kelly Live, The View and Dr. Phil are listening.
What do you think your petition will mean to people watching these talk shows at home, if you succeed?
I think it will prove that people with autism and their families can still feel like they belong. I think that it will teach the world that we are all different but that doesn’t mean we all can’t do the same things.
In the Eye of the Storm
A news reporter once asked me to describe our a-ha moment with Carly. He wanted to understand that blinding flash of insight we had had about our daughter. I thought for a moment before replying, “There never has been a moment like that. Carly has always just been Carly.”
From the moment our daughters were born on a gray morning in January 1995, both my wife and I knew which twin—Twin A or Twin B—was going to grow up to live the life of Carly, and which would become Taryn. Call it intuition or cosmic intervention, but one baby just was a Carly.
After the unsettled time around the birth of our son four and a half years earlier, we were elated to close the book on trauma and start a new life with our enlarged family. Matthew had been born during the grieving period for Tammy’s mother, who had died suddenly just months before his birth.
Having the twins had not come easily. Creating life was not an issue for Tammy; sustaining it had been. After three miscarriages in the years after Matthew was born, we were about to break the curse. We looked forward to a fresh start. Quid pro quo; we were owed that much. “How many bedrooms do you have?” Tammy’s obstetrician-gynecologist had asked her cryptically five months earlier, during the summer of 1994. “Three,” Tammy replied. “You might want to consider four,” Dr. Amonkwa said.
It seemed that the Clomid, progesterone, and aspirin that he had prescribed had broken the cycle of lost babies and parental despair. Rather than one child, Tammy was pregnant with twins. Other doctors had told us that perhaps more children were not meant to be. But we, and in particular Tammy, seldom took “perhaps not” at face value.
After careful monitoring for the rest of the nine months, Tammy gave birth to our daughters. We considered naming them after the drugs that made their uccessful birth possible, but Clomid and Progesterone Fleischmann would have been cruel.
Our older twin and middle child arrived at 7:38 a.m., and her little sister, Taryn, fourteen minutes later. Carly had been the feisty one in utero, clamoring to get here. But once she arrived, she seemed to take a look around and say, “Oh, wrong place.” This world would never be in step with our little girl. Within weeks of her birth, Carly took on a startled and cranky look, one that matched her demeanor.
Taryn was peaceful and elegant with a cap of dark hair and a quizzical expression. But Carly arrived blotchy and patchy and looking surprised. From the prenatal medical records, there was little to suggest that the fraternal twins would have such different fates. Tammy’s medical chart indicated that the delivery of the girls was “spontaneous, vaginal, and uncomplicated,” much like the act of their creation had been. After a week in the hospital, we bundled our tiny new-potato-like parcels into furry winter baby buntings and brought them home to our modest Toronto house.
The next six months were a bleary, sleep-deprived period of normalcy. As normal as a household can be with three children under five, two of whom eat every three hours, twenty-four hours a day. Tammy and I would plod up the steep, narrow staircase to our bedroom around 9:00 p.m., lugging two babies and six mini-bottles of formula. Frighteningly, all six portions would be consumed before 5:00 a.m. the next morning, each feeding followed by the requisite diaper change.
Tired as I felt, I couldn’t fail to smile at the two little swaddled lumps. Carly and Taryn slept in a large woven basket that we placed atop a low dresser that Tammy had been lugging through life since college. It was stained a puzzling shade of green and had more sentimental than aesthetic value. Now tucked into an alcove in our bedroom, it served as a pedestal on which our daughters started their lives.
The two girls had spent nine months pressed together in Tammy’s womb and felt completely natural being tucked in tightly, snuggled closely. We made a conscious effort from the start to give them unique identities, refraining from dressing them the same or referring to them as “the twins,” but rather as Carly and Taryn. Yet, they were two halves of the same whole and would lie together, reaching out and touching each other, practically hugging. How were we to know that one day they would grow to be like the front and back cover of a book—matching opposites—with so much separating them?
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