To see Fox News coverage of Jeremy’s graduation June 2011, click high school graduation.
Grad with autism earns long-awaited diploma
Published in the The Coast News
by Lillian Cox
DEL MAR — Among 632 seniors graduating from Torrey Pines High School on June 18, no one could be happier than Jeremy Sicile-Kira. And this isn’t the first time Jeremy has walked with his graduating class.
Three years ago Jeremy, who is severely autistic, completed the functional life skills track at Torrey Pines. For his efforts, he walked through the ceremony but he did not receive a diploma.
In the fall he proceeded to an off-campus transition program to learn living and job skills.
“He didn’t do well,” said his mother, Chantal Sicile-Kira. “He was noncompliant and didn’t want to do anything. He was bored.”
Jeremy was educated through a combination of home schooling by his mother and special education that included taking mainstream classes at Torrey Pines in marketing, economics, social sciences and psychology.
Because he was unable to speak, Chantal Sicile-Kira taught Jeremy how to communicate using applied behavior analysis. The technique involves a laminated, paper keyboard, which Jeremy uses to spell words by pointing.
Frustrated that Jeremy was doing poorly in the transition program, Chantal Sicile-Kira spoke with Bruce Cochrane, executive director of pupil services at the San Dieguito Union High School District.
“Bruce said, ‘Why didn’t you have him go for his diploma?” she said.
Chantal Sicile-Kira learned that in order to graduate with an academic diploma, Jeremy first needed to pass a high school exit exam and earn credit in required subjects.
“The school looked at Jeremy’s transcripts,” she said. “Since he was allowed to be in the educational system until the age of 22, he had enough time to earn credit if he took two classes a semester.”
Another thing that worked in Jeremy’s favor was that students are given six chances to pass the California exit exam.
“We thought we’d have him take the test and use it as a baseline,” she said. “He passed it the first time.”
This fall Jeremy will start college the same time as his younger sister Rebecca, who graduates from Canyon Crest Academy on June 18. She is entering UC Davis as a freshman.
Jeremy will embark on a degree in journalism
or communications at MiraCosta College. This semester he got a head start by completing a course in intercultural communications.
Jeremy is already a published writer. He’s written a column titled “Life As I See It” in the school newspaper. In April he published an editorial in the North County Times. Currently he’s working on a book about his life.
In addition, he collaborates with his mother, who is an award-winning author, speaker, and president of Autism Making A Difference, Inc.
A few years ago Jeremy was featured in MTV’s documentary series “True Life,” for the episode titled “I Have Autism.”
Since then he has become a popular speaker who offers these words of advice to the graduating class of 2010 in a speech he’ll be delivering this afternoon.
“My real message to you today is: Teachers, never underestimate your students no matter how disabled they may appear or what difficulties they face.
“Parents, believe in your children and encourage them to fulfill their dreams.
“Students, give yourself the power to hear the voice inside telling you that you can create the life you dream of. Believe in yourself, and never allow anyone to discourage you.”
Chantal Sicile-Kira has always believed in her son’s potential, even when she was advised to “find a good institution for Jeremy” when he was growing up.
“He is heading to a good institution now,” she said. “It’s called ‘college.’”
This summer Jeremy was invited to address the Staten Island and Manhattan chapters of the National Autism Association. He has secured a donation of $500 for travel costs for his mother and him but needs an additional $300. To make a donation or to contact Jeremy, e-mail jsicilekira@yahoo.com.
Chantal Sicile-Kira has just released a new book, “41 Things to Know About Autism.” For more information visit chantalsicile-kira.com.
SOLANA BEACH: Nonverbal autistic student to give commencement address
Torrey Pines’ Jeremy Sicile-Kira clears big hurdles on road to graduation
Published on the front page of The North County Times
By CHRISTINA LOPEZ
Most people would consider scaling Mount Everest or winning a Nobel Peace Prize an impressive feat, but Jeremy Sicile-Kira —- who was diagnosed at age 3 with severe autism —- is scaling heights that are equally impressive.
On Friday, the 21-year-old is set to become the first nonverbal autistic student to receive a full academic diploma from Torrey Pines High School, San Dieguito Union School District officials said.
He will also give the school’s commencement address, which has been prerecorded using a computer voice generator that translated his typed speech into an audio file burned onto a CD.
Sicile-Kira communicates by using what is known as Rapid Prompting Method, a system that requires intense focus and participation by aides or other caregivers to keep him on task.
In Sicile-Kira’s case, his mother, Chantal, and aides use prompts —- snapping their fingers or pointing at familiar objects —- as they ask questions.
He then points with one finger to a letter board or keyboard to spell out his answers.
“My mom tells me that no one is better than anyone else,” Sicile-Kira said in an interview last week, using his laminated keyboard, and assisted by his mother. “We know that we should try our best.”
Autism is a range of complex neurological disorders characterized by social impairment, communication difficulties and repetitive behavior patterns, according to the National Institutes of Health.
Many people with autism are diagnosed as toddlers. In severe cases, children with autism appear to be locked in their own worlds, unable to communicate.
Chantal Sicile-Kira said her son began showing signs of autism when he was 9 months old.
“He didn’t move. He didn’t develop right away,” she said. “I had to fight to find out about Jeremy’s condition.”
In the years since, she said, her son has gone through home schooling, special education and many different therapies, but couldn’t spell out words until he was 14 years old and began learning RPM.
“I really believe in the impossible,” she said.
At Friday’s commencement ceremony, Sicile-Kira —- decked out in cap and gown —- will deliver his speech to 619 fellow graduates.
His sister, Rebecca, 18, is graduating earlier Friday from Canyon Crest Academy and will be in the audience during the 4 p.m. Torrey Pines ceremony.
“The staff and the students know him so well —- they’ll be encouraging him,” she said about her brother’s participation in the event. “I think people will be proud of him when he delivers the speech.”
Bruce Cochrane, executive director of student services for the San Dieguito Union High School District, has worked with Sicile-Kira for the past three years and is just one of the many people who helped him reach this goal.
“Jeremy is an incredible young man,” Cochrane said. “I think as he has matured, his skills and talent have flourished. (He) has been able to communicate at a greater level and really show people his intelligence.”
Sicile-Kira is able to earn his diploma under a state law that gives special education students until age 22 to do so.
He completed the necessary course work and passed the California Exit Exam on his first try.
Sicile-Kira’s mother said she never believed the naysayers who told her when the boy was young that he would have few options in life.
“Once they diagnosed him, I was told to find him a good institution,” she said. “And I have —- it’s called college.”
In the fall, Sicile-Kira will enroll at MiraCosta College in Oceanside, with an interest in journalism; he hopes to write for the college newspaper.
Until then, his summer plans include financing a two-week trip to New York City. He also plans to publish his first book and establish an online newsletter geared toward helping families understand children with disabilities such as autism.
“I think I greatly inspire others by my ability to continue to learn and not give up on my dreams,” he said.
An author, speaker and autism expert, Chantal Sicile-Kira is working on her fourth book on autism and says she has learned much from her son in the years since his diagnosis.
“We raised him to never feel sorry for himself,” Chantal Sicile-Kira said. “He’s a big inspiration to me. He has taught me patience and has actually made me into a stronger person.”
The message Sicile-Kira wants to convey to the class of 2010 is to focus on a goal and never give up on yourself.
“When I first arrived, I had no way to communicate,” he said. “But over the years, I learned how to spell, and my life changed from one of loneliness to one of having great teachers and an education.”
It Takes An Army
Graduating high school was not one of the goals I had for Jeremy. Now he’s college bound.
In 2007, my son Jeremy walked the graduation ceremony at the local high school along with the other seniors from his severely handicapped class. On June 18, he will be walking the graduation ceremony again, in the same gold and scarlet robe he wore three years ago. This time however, he will have earned and will receive a full academic diploma. He has a GPA of 3.5. For me, this is unbelievable. Graduating high school was not one of the goals I had for Jeremy. The goals I had were mostly those based on functional living skills.
When Jeremy was diagnosed, I was told to find a good institution for him. I don’t think the medical professional who diagnosed him meant “college,” but that is where he is headed. People ask me how Jeremy made it to this point, and the truth is, there is no short answer. Like most parents, I started out hoping to find that “one thing” that was going to make a huge difference in Jeremy’s life, that would improve his chances of overcoming the challenges he faced. But I soon realized that there is no magic bullet.
Jeremy, now 21, has received numerous treatments, therapies, and educational strategies (some of which he still continues) with acronyms such as ABA, TEACCH, OT, SI, AIT, VT, RPM, and some biomedical interventions including methyl B12, HBOT and more. All of them have helped somewhat, some more than others. But the most important ingredient to Jeremy’s success has been the same that it is for all of us: having the right people as teachers and mentors – people who believe in you, who motivate you to do your best. People who see beyond the label and who are willing to see the person. People who are willing to try different ways of reaching and connecting with the student, when the traditional ones do not appear to be working.
Any tasks requiring motor planning and sensory processing have always been extremely difficult for Jeremy. My office is full of binders that include Jeremy’s task analysis and data sheets for all kinds of skill acquisition such as fastening pants and brushing teeth. When he was younger, many educators and other professionals took Jeremy’s inability to respond as a lack of intelligence, rather than as challenges due to visual processing issues and difficulties in initiating and controlling his motor planning. Teaching methods based on visual strategies did not work with Jeremy. He is not a visual learner, and his visual processing was not working correctly, but no one recognized that at the time.
When he started high school, Jeremy attended a class for the severely handicapped at the local school. When Jeremy’s teacher, Rachel Page, came to our house for a home visit and saw how I was teaching Jeremy to point to letters to spell words. Jeremy had been taught by Soma Mukhopadhyay twice a month, over a period of 14 months, using the Rapid Prompting Method she had developed, and I continued to work with Jeremy using this method of teaching. Rachel tried what she had observed at school and was successful. By then, I had had enough battles with the powers that be to even consider asking them to use an unknown method to try and teach Jeremy. (The year before, Jeremy had come home from the middle school with rug burns on his chest and back inflicted unknowingly by an inexperienced occupational therapist, and had ended up filing for due process when the school district refused to provide training. At the IEP meeting I had requested, the OT said she didn’t need anymore training. No comment.) I had decided to do what I did at home and to just focus on Jeremy having a safe environment at school and coming home unmarked.
Rachel then invited me to the classroom to show her and Jeremy’s paraprofessionals how I was teaching Jeremy at home. At an IEP meeting, it was decided by the IEP team to allow Jeremy to attend one general education class on a trial basis. This was a major victory for Jeremy at this school district at that time.
Jeremy’s most important growth period came over the next three years, thanks to Allan Gustafson. Allan was Jeremy’s second teacher in the SH classroom and is the best teacher that Jeremy has ever had. He helped Jeremy—and all his students—grow not only intellectually, but emotionally as well. To give you an idea of the type of teacher Allan is, read Allan’s assessment of Jeremy for an Individualized Transition Plan (ITP) meeting in 2006. It says it all about the type of person he is:
“Jeremy is a complicated young man who people cannot judge on appearance. A good metaphor would be to describe Jeremy like as an artichoke. Each leaf on the artichoke has to be taken separately, each having its own characteristics. As you go through each layer of the leaves, it becomes more apparent that there might be something inside, something worth getting to. It takes time to get there, but there is a heart inside, worth the time and effort to expose, as some people say is the prize for the patience of delving through the layers of leaves. Jeremy is this man.”
In June 2007, Jeremy was technically a senior and it was time for him to attend the off-site transition program, thus his participation in the high school graduation ceremony. By that time, Jeremy had made it clear that he enjoyed learning, and wanted to continue learning even if he was no longer on a high school campus. Some of his IEP goals by then included preparing him for taking the GED sometime down the line while attending community college. It was clear that he was capable of doing that, although I would never have though that possible a few years earlier.
However, Jeremy did not handle the transfer out of high school into the transition program well at all. Meanwhile, my father was dying from lung cancer and I was traveling a lot to helping him and my mom, who lived two hours away. I wasn’t able to work towards changing the situation. Bruce Cochrane, an administrator new to the school district (now head of Pupil Services), became concerned about the complete change in Jeremy, from a model special education student to a non-compliant, unhappy and disruptive person. Bruce started asking questions, studying Jeremy’s school records, interviewing teachers, observing Jeremy. Jeremy, still considered a transition student, was moved back to the high school where his behavior improved. He continued on a couple of workability projects, but started taking general education classes again.
Then, at an IEP meeting, Bruce brought up the question – was Jeremy interested in working towards obtaining his diploma? According to Jeremy’s official transcripts, Jeremy needed more credits in certain subject areas, and he needed to pass the California High School Exit Exam, which is routinely given to tenth grade students. Students are allowed six chances to pass this test. The IEP team recommended that the test be given to Jeremy the first time as a baseline, if he was interested in trying to get his diploma. Jeremy surprised us all by passing on his first attempt all the parts of the test he was given. However, for some reason, the school did not administer the essay part of the test, and Jeremy had to retake the complete English section of the test a few months later. Again he passed. Since then, he has steadily been taking two classes a semester towards his diploma.
This June, I am doubly blessed. Not only is Jeremy graduating from Torrey Pines High School, his sister, Rebecca, is graduating from the other high school in our area, Canyon Crest Academy. I am proud of both of them, and thankful for the educators that have crossed their paths, not to mention the army of paraprofessionals, therapists, support staff and other professionals who have joined us on our journey. Clearly, there is not one magic bullet. Rather, it takes an army, and we will never forget them.
This article was first published in Spectrum Magazine, June/July 2010 issue.
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 Horse Boy: Looking for Answers to Autism With Horses in Mongolia
On Tuesday, May 11, The Horse Boy airs nationally 10pm EDT on the PBS series Independent Lens.
The Horse Boy is a film about a dad (Rupert Isaacson) and a mom (Kristin Neff ) who are trying to do what hundreds of thousands of families in America do every day – search for a way to reach their child with autism. Only, we don’t look so good doing it and we usually stay pretty close to home.
Rupert is a past professional horse trainer, writer and journalist as well as a human rights advocate for tribal peoples. Rupert’s wife and Rowan’s mother, Kristin, is a tenured professor of psychology, and has been a practicing Buddhist for more than 10 years. She is well known for her researches into the Buddhist concept of self-compassion and its correlation with positive mental health. When Rupert witnessed the amazing way in which their son Rowan, who had autism, connected with their horses in Texas, they started to wonder if there was a place on earth that combined healing and horses. They discovered that the nomadic horse life is still lived by most of the people Mongolia, and it is also the one country where shamanism–healing at its most raw and direct–is the state religion. So off they went.
All right, so maybe we all can’t grab our kids with autism and take off for Monglolia and ride horses and experience ritual healings with the reindeer people. I know my area’s Regional Center isn’t going to pay for it and neither is the school district. However, the point of the movie is best highlighted by Michel Orion Scott (director and cinematographer) of “The Horse Boy” when he is asked what he thinks ‘healed’ or helped Rowan. His answer:
“I don’t know … but what I do know is that, if there was one thing it could be contributed to, without a doubt, it is that the parents took that extra step to follow their child into the unknown. To allow themselves to trust the love they have for their son and to do whatever it took to find a way into his life.”
It’s a good reminder, as parents to follow your instincts, observe and listen to your child. Cheesy as it may sound, follow your heart. It’s sound advice. Though Rowan, Rupert and Kristin are in Mongolia, they encounter the same trails and tribulations that most parents with autism do. We hear Rupert exclaim,
“Sometimes it is like he (Rowan) is leaping forward and sometimes it is like he is totally regressing.”
Who can’t relate to that? What parent doesn’t feel that anguish every time there is a ‘setback’? Your child or teen goes back to some disruptive or unhappy behavior, and you are filled with the double anguish of not being able to figure out how to make him feel better, and the fear that it may not be just a temporary regression.
With all the ups and downs we parents of children with autism have to face, it’s nice to see inspirational movies such as this one from time to time. The scenery is beautiful and it’s a pleasure to watch a movie about autism that doesn’t take place in a classroom. It’s also good to know that Rupert and Kristin have used the profits from the book The Horse Boy to found the nonprofit Horse Boy Foundation, which offers the chance to ride and benefit from close contact with horses, other animals, and nature. They welcome families to spend time there.
My favorite line in the movie is when Rupert says:
“We’re gonna climb up 12,000 feet to perform 4 hour healing rituals with shamans, isn’t that what all families do?”
Rupert was being sarcastic, but the answer is, “Yes.” Yes, it is what all of us parents do. We get up and we climb mountains every day, in order to help our children. Sometimes the shamans are helpful, and sometimes they are not, and often it is hard to tell the difference. Watch this film, and you’ll be inspired to continue climbing those mountains. You know it’s worth every step.
“THE STATE OF THINGS” North Carolina Public Radio station WUNC
Click here for a link to the radio show
The program is “The State of Things” on North Carolina Public Radio station WUNC. Longtime NPR correspondent Frank Stasio hosts the program, which this time focused on autism.
The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:
“… Jeremy is almost 22 now and he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.
I was on a panel that will include Autism Society of North Carolina spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter. TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.
Jeremy Using an iPad
Jeremy has been trying to master turning the pages of a book. He loves to read, and he loves learning, but getting all his motor planning / sensory processing to move the pages of a book are a bit much. Here you can see how with the use of an iPad he learned quickly how to turn the pages of a book on the iPad. Great use of technology!
First he learned to slide his finger across the screen:
Then he learned to slide his finger to turn the pages:
I hope this encourages others!
How to Teach a Child or Teen with Autism the Concept of Waiting
There are a few things in life that are certain: paying taxes, death and waiting. No matter who you are, part of your life will be spent waiting. Unfortunately, the “waiting” concept is not one that is picked up by osmosis for many children on the spectrum. Hopefully, they will have learned this concept by the time they are teens, but I’m still including it in this column because it is a necessary life skill everyone needs to learn – on and off the spectrum. We all have to wait in line at the grocery store, wait at the doctors office, wait for a turn on our favorite ride at Disneyland, wait at the restaurant for our food. Children also have to learn how to wait at holiday events, when traveling, at home for things they can’t have right away or to go out for a ride in the car. As children grow into teens and become more responsible for their behavior, waiting is definitely a skill they will be expected to use in the community.
waiting
Here’s one way of teaching the concept of waiting:
- Make a nice- sized (4×4 or bigger) picture icon that has a figure sitting in a chair, and the face of a clock on it. Put it somewhere convenient and noticeable, such as the refrigerator.
- Glue a piece of velcro on the big icon for putting a smaller icon of requested item on it.
- Have a timer available.
- Have small icons of the child’s favorite items that he likes to request.
- Have those items (food or toys) within his eyesight but out of his reach (but easily within yours).
- When child asks for item out of reach, show him the corresponding icon, place it on the bigger waiting icon, and say “we are waiting” and set timer for whatever his capability for waiting is at this point (10 seconds, 30 seconds, 1 minute).
- As soon as the timer rings, give him immediately the requested item. Tell him “We are finished waiting.”
- Do this many times whenever the opportunity arises and extend the amount of time until the child can wait longer and longer.
Each child is different in how long this will take or for how long he can learn to wait (and this will change as well over time). Eventually when he is asking for a ride in the car and you can’t go right away, you can tell him “Not now, in 10 more minutes your sister will be ready. We are waiting,” and he will get the idea that he may not get what he wants now, but he will get what he wants eventually. This will lessen his frustration, and subsequently, yours.
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.