Attitude is Key

Rebecca and Jeremy Sicile-Kira, high school graduation, June 2010


“Tell him every day that you love him, and that you know he is smart.”

This is what Jeremy, my then 21-year-old son, responded to a mother asking for his advice. She wrote to Jeremy, telling him she had a non-verbal 12-year-old, and she was worried about what he was thinking and how he was feeling. She wanted to know what she could do for him until he was able to communicate his thoughts.

Reading Jeremy’s response brought back memories. Every night for many years, while tucking Jeremy into bed, I would tell him those two important facts.  I never realized the positive impact repeating those words to him every night would have on his self-esteem. I just told him how I felt, just as I would tell his sister, Rebecca.

Jeremy is now 29, and communicates mainly by typing or points to letters on a letter board.  Despite his challenges, Jeremy graduated 8 years ago from high school with a full academic diploma (watch his  commencement speech). Jeremy’s success is no miracle; rather it is a story of hard work and commitment on the part of many people. The one who has worked the hardest is Jeremy. My goal for him was to reach his potential – whatever that was – and to be able to communicate with those around him.  Since graduation, Jeremy has co-authored the book  A Full Life with Autism (Macmillan) and is a gifted artist.

When Jeremy was little, we lived in France and in the UK. We had no early intervention; we had very little help or encouragement from the powers that be. Basically, I was on my own and I had to figure out how to help him. At first I just read to Jeremy and showed him pictures and tried whatever I could to reach him; then I tried different methods I heard about that made sense for him. But I always presumed competence and spoke to him as if he understood everything. I was convinced he did.

For the past 15 years  Jeremy has been able to  type and communicate about his life and what he experienced as a child, what  autism felt like to him, and in what ways the different therapies helped (or didn’t).   I have found out more about what was really helpful to him. Some of his comments are very specific, others are general such as this:

My mom saved me from a life of despair. Her attitude is the key to my success. She made me feel like I could be a success no matter my challenges. Basically, if it was not for my nice mom and great teachers, my life would not be worth living. They believed in me and that has made the biggest impact—more than the type of teaching methods used.

As parents and educators, we spend a lot of time talking about educational methods, but not much about attitude. Yet, when I interviewed people on different parts of the spectrum for my third book, Autism Life Skills, they, like Jeremy, often discussed the importance of their parents’ attitude to their success. Daniel Tammet, author of Born on a Blue Day, has this to say about his parents:

In spite of all my many problems, they loved me unconditionally and devoted themselves to helping me – little by little, day by day. They are my heroes.

The message is clear. Yes, we need the right educational environment for our children. And unfortunately, many children on the spectrum do not get much positive feedback at school or in the community on a regular basis. But if you are a parent, take heart in knowing that your child’s self-esteem benefits greatly from your loving and positive attitude. Knowing his parents are there for him, that they believe in him and in his ability to learn, can make a world of difference to a child’s state of mind.

Travels with Autism: Paris Patterns


Musee Quai d'Orsay

Musee Quai d’Orsay

When Jeremy was little, he loved looking at patterns. He was born in Paris and always loved studying the various patterns that French architecture provided him. Back then, I did not know why he was so interested in them. He had autism and admiring patterns appeared to be part and parcel of that.

Years later, when he could write, he explained that he liked patterns because they are predictable  – they don’t change. Patterns help him make sense of the world.

Now I’m back in back in Paris for ten days with Jeremy’s sister, Rebecca. We visited a few patterns Jeremy enjoyed when growing up here, and took pictures for him to enjoy.  I hope you enjoy these  little bits of Paris as well!

Apartment lobby floor tiles

Apartment lobby floor tiles

Street sign and building bricks

Street sign and building bricks

pavement stones (les pavees)

pavement stones (les pavees)

Place des Vosges. Ceiling

Place des Vosges. Ceiling

Lefevre water closet floor tiles

Lefevre water closet floor tiles

Lefevre kitchen tiles

Lefevre kitchen tiles


If the kids are still alive at five…..

I say, if the kids are still alive at five, I've done my job.

It’s been one of those days –  support person can’t come in because her puppy is sick and I’ve got tons to do.  Meanwhile, I find suspicious stains and matter on the floor and rug, and I’m not sure who is responsible for them (we do have a cat and a dog….). It takes a good hour to clean it up, because the matter  somehow  ended up on Jeremy shoes, which of course he then tracked all over the house.  I’m still finding stains hours later. Jeremy edits his homework assignment, but I can’t seem to upload it on his college blackboard assignment page. I get an extremely rude email from a person (who could use some tips from Miss Manners) demanding immediate  information  about a Taskforce I am co-chairing  and a California insurance bill (Just FYI – I’m not in charge of updating the Senate Autism Committee’s website where the Taskforce information is supposed to be posted, in case anyone was wondering… ).

In the middle of all this, Jeremy walks by where I am sitting as I try  to  resolve a problem on his computer. He gently drops the above postcard (which is usually taped up on our refrigerator) near me. Yup, Jeremy, it’s one of those days. Thanks for acknowledging it.

But there’s always tomorrow…..

The Spirit is Willing But the Flesh is Weak

This morning Jeremy said he wanted to go to church. I checked a couple of time to make sure that that is what he really wanted to do as he had been up a good part of the night in a hyper happy state. This was following a period of three weeks where he was happy, but calm and relaxed.

We got to the church, but he didn’t want to get out of the car. I convinced him to get out and we head up to the service (Unitarian Universalist) which is held outdoors in a beautiful setting under pine trees. Jeremy really likes this place.  But today, Jeremy could not or would not sit still;  looking at a book did not help. Finally he started foraging in his backpack for a ‘toy’ – any kind of string, ribbon or piece of rope. And he sat there and stimmed. Then he got up and stated to prance away as if to leave. I convinced him to go back to sit down. Then, an elderly woman sat down next to him and pulled out a cookie and started to eat it. Of course I didn’t know this till I heard a commotion next to me and realized that Jeremy had grabbed  the cookie out of her hands (but really – why was she eating a cookie during church service? I wasn’t looking out for that). Then he left running towards the parking lot. I had no alternative but to follow him.

Many times Jeremy has problems controlling his body or organizing himself and he needs his “rules” or help from us. His spirit is willing but his flesh is weak is how I describe it. This time I think perhaps he just wanted to go for the ride in the car to church and hear Dave Matthews in the car.  It doesn’t matter that he has a high school diploma or that he can communicate by typing or that his mom is supposed to be knowledgeable when it comes to autism stuff – sometimes he is just not himself and he seems unable to communicate about it. We used to blame  behavior changes  on the full moon because it would happen once a month for a couple of days, but it appears to be a different cycle now. Maybe he is sick? I just had the flu, maybe he is coming down with it. Maybe he is nervous  because we have been interviewing new support staff, and even though he helps interview and loves the people we have found, it is still a change.   At any rate, these moments are frustrating. As a professional, my brain is taking notes and comparing data, trying to find the ABC’s of the behavior, looking at possible causes for the behavior. Meanwhile, the parent in me is tired and worried and hope he will go back to his usual pattern of sleeping through the night and wake up his usual sunny self tomorrow.

I’m hoping tonight is going to look like this :

Jeremy and Handsome sleeping.

Inspirational autistic TPHS student graduates, will deliver a commencement speech

Carmel Valley News, June 10, 2010

Inspirational autistic TPHS student graduates, will deliver a commencement speech

By Karen Billing

Jeremy Sicile-Kira is autistic and cannot speak, but that does not mean he has nothing to say. After seven years at Torrey Pines High School, he has earned his high school diploma and will deliver a commencement speech to his classmates through voice-assisted technology at the June 18 graduation ceremony.

“I am nervous but very touched that I am giving a speech,” said Jeremy, using a letter board to spell out his words. “I want to tell them never give up on your dreams.”

To graduate high school Jeremy, 21, has taken units in mainstream general education classes as well as in his severely handicapped classes with Allen Gustafson, whom Jeremy said is the “best teacher.” He does all the same work as his regular education peers, he just gets more time to do it. He passed his California High School Exit Exam on the first try and will attend MiraCosta College in the fall to study communications.

Next week he will graduate on the same day as his sister, Rebecca, a senior at Canyon Crest Academy.

“I was pretty amazed,” said proud mom Chantal, who never even expected it would be possible for Jeremy to earn his diploma, let alone with a 3.5 GPA.

Along the autism spectrum, every child’s symptoms are different. Although Jeremy can say a few words, he has never been able to speak. In a speech written for an autism conference, Jeremy explained how his autism affected his vision, hearing and motor skills.

He said he had to learn how to hear, how to know which noise to pay attention to and distinguish when someone was speaking to him. He had to learn how to focus to be able to see.

“If I don’t concentrate, the world seems surreal,” Jeremy said.

He encourages fellow autistic children to be patient with treatment and learning methods and to learn to read because “when you can read the world is yours.” He tells them not to worry about what they look like when they are “stimming,” a method of using repetitive motion to keep focused. It is more important to be present than to worry about what other people see, he said.

Jeremy needs support and help from his family and teachers to accomplish schoolwork, but he has never needed to be motivated to learn. He thinks knowledge is important; he loves math even though it is challenging to have to spell out how to solve each problem and he especially loves to write.

“My mom is really nice because she made me realize I could learn,” Jeremy said.

Gustafson, Jeremy’s teacher for four years, turned to Jeremy’s mother Chantal to find out what she was doing at home that could help in the classroom.

“I just kept on giving him words of encouragement and kept on sticking to the plan,” said Gustafston, who left Torrey Pines in 2008 for Eastlake High.

He said sometimes there were hard days, sometimes the methods worked and sometimes they didn’t. But Jeremy wanted to learn as much as possible.

“It was great for him to believe in himself and that education is a value and something to work at…He wanted to show people he wasn’t dumb, that he knew just as much as the person sitting next to him in high school.

“I’m immensely proud of him,” Gustafson said.

Jeremy stresses there is hope in autism, but that nothing will matter if the person doesn’t believe in themselves.

Spreading his inspiring message of hope was only possible after Jeremy found his voice.

To communicate, Jeremy uses a litewriter. He types in sentences and the machine verbalizes his words for him. Scattered throughout the house and in his backpack for school are letter boards which Jeremy uses to spell out words to his family and friends.

To present his commencement speech he will use his laptop’s TextAloud software which takes his writing and converts it into speech—he uses the same program to speak at schools and conventions.

Jeremy has really only been able to communicate with his classmates for the last two years with the litewriter and he said it has changed his life. Before, he has said he felt like he was “imprisoned in darkness.” Now he has friends and like any high school student, swaps messages on Facebook.

The friendships he was able to make were very meaningful and he said what he will miss most about Torrey Pines is “the way I was accepted by everyone.”

Jeremy’s message to others is always to follow their dreams and he’s already accomplished one of his dreams: to earn his diploma. His second big dream is “to make money.”

As he loves to write, he is working on getting a book published and wants to start an online newsletter to “create awareness and answer questions” on autism. To make a living, he will look for sponsors and advertisers on his site and is working on getting more speaking engagements to share his words.

Most of Jeremy’s writings always lead toward the inspirational and one of his personal heroes is Helen Keller.

“When Helen Keller grew up she graduated from college, became an author and an advocate for people with disabilities,” he wrote. “I hope to follow in her footsteps.”

The Ultimate Sandwich Generation

This article first appeared in the April 2010 edition of Spectrum Magazine.

When my father passed away in 2007, we moved my mom to a skilled nursing facility near our home. Caring for my son Jeremy and caring for my mom—one affected by autism and the other by Parkinson’s—I’m continually reminded how similar their brain processing challenges are. One glaring difference, however, is that my son is gaining in skills (albeit slowly), while my mother is losing them.
As an older parent (I won’t say how old – a lady is entitled to her secrets), I’m now sandwiched between caring for my children, and caring for my elderly mother. The balance of time has shifted, and now it is my turn to look after Maman who once looked after me. In the trunk of my car I carry a change of clothes for my son and adult diapers for my mom.

Both Jeremy and Maman require high levels of support and are nearly the same in terms of stress, worry, and time commitment. Soon after moving my mom down here, I was overseeing my mom’s caretakers, as well as my son’s in-home support staff. That pile of insurance papers I already hated filling out for my son looked small in comparison with all the paperwork following my dad’s death and all that needed to be done for Maman. The number of phone calls I had to make to health professionals, therapists and agencies suddenly quadrupled. And then there were the Interdisciplinary Care Plan meetings in regards to Maman and the Individualized Educational Program meetings for Jeremy.

Sometimes, it feels like I’m not doing right by either of them. Meanwhile, I still have my work to do, with deadlines looming. “Squeeze as much as you can into a 24-hour day” seems to be the mantra around here. Because of course there are the financial worries that having a “Jeremy” entails.

The other day I took Jeremy to visit my mom. When we got there, Maman was sitting in the communal living room, where there is not much living going on. Maman was slumped in her wheelchair, staring blankly at the TV screen. We walked in and greeted her, but she did not respond. Maman was ignoring us.
“Maman, what’s going on?” I asked.
“I’m mad because you didn’t come yesterday,” she replied, refusing to look at me.

The day before, Jeremy’s tutor had called in sick, so I’d had to stay home and supervise Jeremy getting his homework done. Maman doesn’t get that sometimes I have to choose between her needs and my children’s needs. Tough situation to be in, but it is the reality of those of us in the sandwich generation.

I apologized for my absence, but Maman was still pouting. “And Monica didn’t come today.” she stated. Monica is my sister in L.A., a two-hour car ride away.
“Maman, Monica is coming tomorrow, Friday. Today is Thursday. But I’m here now, do you want to play cards with me?” I asked. Maman loves to play cards.
“Non,” she replied.
“Fine, then I’m going to play a game of solitaire by myself.” I pulled out the cards and set up the game to play. Maman didn’t react at first, but after I played a few rounds, she slowly moved her hand, picked up a card and moved it to where it belonged. Good, I thought, I got her interested.

Meanwhile, Jeremy sat at the table, quietly stimming with one of Maman’s little stuffed animals. She keeps them in a bag hanging off her wheelchair, along with the playing cards and a book. As he was stimming, he rocked, and his chair started to slide backwards. Not a good thing considering that very old people in wheelchairs were right behind him. I asked him to budge, but he ignored me, so I got up and pushed his chair back in closer to the table. I sat back down, and Maman was back to staring at the TV screen. I tried to get both Maman and Jeremy interested in the card game, but nothing doing. I pulled out one of Maman’s Paris Match magazines—they both like to read those—but they just sat there unresponsive, each in their own little world. I continued my game of solitaire. There I was with two of my closest family members, and I had never
felt so alone.

Back home, there was a reminder email from Rebecca’s high school about an upcoming meeting. This is Rebecca’s senior year, and there are all these things I am supposed to be doing in order to help her choose, apply, get into, and pay for college. Things are much more complicated now than when I was in high school. Although I know all the ins and outs of special education, I am at a loss when it comes to college prep, and I feel like I am already behind in helping my daughter to navigate through all that she should be doing. Gosh, have I been spending so much time taking care of Maman and Jeremy that I have seriously messed up my daughter’s future? Something else to worry about, and now I will have to skip a visit with Maman to attend this meeting. It’s tough having to choose between being there for your child and being there for your parent.

Every one of these people whom I love and cherish requires and needs my attention. Sometimes I feel overwhelmed and I think, “How did I get here? How did I become the primary caretaker for so many needy people?” And of course just asking the questions makes me feel guilty.

Then it hits me. I don’t want to rush through any of this.  I want to savor the next few years. Spending time with Rebecca is a joy; I don’t want to miss a minute of my teenage girl’s transformation into a young woman. She will be out of the nest before I know it. Maman has only a few years left, and I want to be there for her the way she was for me when I was little. Jeremy is evolving into adulthood, and it is gratifying to see how mature he is becoming. I don’t want to miss a minute of any of it.
This sandwich generation stuff is tough. But soon, my husband and I will be all alone and I’m not sure I’m ready for that. I’m lucky to have all these people to care for, needing me, surrounding me. My plate is very full, and yet that is what gives my life the richness and flavor that makes it worth living.