Transition to adulthood: Jeremy is moving into his own place!

Chantal Sicile-Kira August 20, 2014

Jeremy (a bit overwhelmed with so many people invading his space at the same time) and part of Team Jeremy.

Jeremy is moving into his own place. Months ago, when we found out that Jeremy received the approval and supports (from the powers that be) to make Jeremy’s dream a reality, I enthusiastically stated in an AutismCollege blogpost that Jeremy and I would be blogging about the process of preparing for this major transition – in the hopes that some of the information would be useful to others.

As John Lennon once wrote, “Life is what happens to you while you’re busy making other plans.” Here it is, almost six months later, and we’ve had no time to write. I’ve moved over fourteen times since I was a baby, so I’m no newbie when it comes to moving into a new home. But for Jeremy, moving meant more than just transferring to another living space. In the book, A Full Life with Autism, Jeremy and I described some of the preparation that has been ongoing for years. Here’s what the last six months have entailed:

Learning to be more independent in certain home skills: Learning physical tasks is challenging for Jeremy due to his visual processing and motor skills. Practicing in a familiar environment helps before transferring the skill to a new environment. We have to break down tasks into simple steps.
Learning what it means to be a good housemate: As soon as Jeremy knew that his dream was coming true of having his own place shared with another person; he wanted to know what it meant to be a good roommate. He asked a young man he knows at his volunteer job to have breakfast with him so he could ask him what to look for in a roommate, and how to be a good roommate. He had heard this man talk about his roommates, so he figured he might have advice. Then, Jeremy wrote some simple rules for himself to follow, ie “The first rule is that I need to do my dishes when I make food.”
Finding the right apartment in the right neighborhood: Jeremy has always wanted to live in the neighborhood he grew up in because everyone knows him. When he goes out shopping, or walking the dog or to the beach, people stop and talk to him. That’s important to him.
Finding the right housemate: Jeremy needed to find someone who would share the apartment with him (each have there own bedroom and bathroom). Jeremy needs 24 hour supports, and the apartment-mate would be responsible for being there most nights. LifeWorks (the company that was vendored to provide supports and supervision to make all this possible) found Jeremy’s housemate.
Finding the right staff: We are lucky in that we have wonderful support staff that have been with Jeremy for years, but we needed more people to fill all the hours on the schedule, and LifeWorks found people that were a good addition to the existing Team Jeremy.
Staff training: Because of Jeremy’s communication challenges, training was and continues to be a high priority. New ‘Team Jeremy’ members receive a certain amount of training so that they- and Jeremy -can feel comfortable and safe as they go about their day.
Preparing the apartment: Having the apartment as functional as possible for Jeremy helps him be more independent. Where everything is placed in the cupboards, how everything is organized is what makes him successful in completing tasks. Think about how someone with limited visual skills and limited motors skills needs to be able find and get what he needs for everyday life – that’s what Jeremy needs to be as independent as possible.
Having his sister Rebecca’s advice on his décor: Jeremy was very clear as to what he wanted in the apartment (very little) the colors he wanted (solid, no patterns and lots of green) and what he wanted to hang on the walls (a few paintings representing calmness, friendship, love). But he wanted his sister- whom he has helped move away to college and into different living situations there- to help him find the furniture needed in the living room and to help him with figuring out where to hang his chosen paintings and posters.
Earning the money to pay for his rent: Jeremy is responsible for his share of the rent, and he wants to earn money from his painting. Mom is helping with the marketing at the moment (anyone want a painting, prints or cards? Contact me!).

There is undoubtedly much more to add to this list, but this is a good start. At time of writing, September 1st is the official date for Jeremy’s full-time move to his apartment. Just like Jeremy learning the skill of pointing to letters to communicate, being ready to move out away from his parents did not happen overnight. He has been preparing for this transition for many years (read A Full Life with Autism). It’s a process, and it is still ongoing. There are sure to be bumps in the road, but that’s life. We feel grateful that wonderful Team Jeremy and LifeWorks are here to support him as he takes the first steps of living his dream.

All you need is love …

Chantal Sicile-Kira August 12, 2014

As parents, most of us are concerned with the basics in regards to our children with autism: “Are they getting their educational needs met?” “When they grow up, where will they live and will they be employed?” Of course, these are important concerns. But so are creating connections with others, and developing healthy relationships. It’s not always easy to know how to help our children foster relationships. If you are a parent or educator in Southern California, then you are in luck. Love & Autism: A Conference with Heart is taking place in San Diego on August 23rd and August 24th.

Jenny Palmiotto, LMFT, Owner and CEO of The Family Guidance & Therapy Center of Southern California decided to host this conference, and Jenny explains why in this blog post from the RDI Connect website: “As a professional who works directly with the autism community, the version of autism that the media depicts is far narrower than the diversity of people whom I have the privilege to work with on a daily basis. Likely the most devastating myth that I hear about individuals with autism, is that “people on the spectrum” do not want or need relationships. The most worrisome part of this falsehood is when loved ones and individuals on the spectrum start to believe this debilitating myth. It is crucial and long overdue that we discard this limiting belief. Relationships define lives, everyone’s lives. Our primary goal in life is to love and be loved; this does not change when you are born with neurological differences associated with autism. Love is an innate and fundamental part of being human.

Many people struggle to find love and trusting relationships; some of those people have a diagnosis called autism. The diagnostic criteria for autism include social deficits as one of the three hallmarks of the disorder. However, the core deficit in interpersonal relationship does not mean that there is not a desire or longing to connect with others. Individuals on the autism spectrum want and need relationships at all phases of their lives.

New research shows the bi-directionality of autism, meaning that when an infant that later becomes diagnosed with autism interacts with his mother, he is more withdrawn, responding less to his mother’s attempts to interact and then, in turn, the mother’s interactions become more directive and less responsive/sensitive. The early relational disturbances that mark the parent-child relationship for those on the spectrum frequently extends over the course of life with difficulties in developing friendships and later intimate partnerships. Regardless, individuals on the spectrum feel the same emotional longing to belong and to be a part of something special at home, on the playground, in working/professional relationships, or as part of a team. The problem becomes: how can individuals on the autism spectrum get the closeness they want and deserve?

The ability to give and receive love is far more than a social skill that can be learned; it takes perseverance, reflection, risk, and trust. Our brains are experience dependent organisms, meaning that an individual has to experience relationships rather than simply learn about them in isolation. Professionals working with individuals with autism need to begin by understanding the neuro-science of attachment and love. It is essential that autism professionals do more than stop aberrant behaviors. We need to make sure that our interventions and methods have relationships as the primary focus. Relationship building cannot be secondary to behavioral skills training. Developing the “we” is important from the first moment of life and thus should also be central within our treatment options for those on the spectrum. Fulfilling reciprocal relationships are not only possible for all individuals on the spectrum, they are imperative to living a full and satisfying life.

If you are interested in finding out more about how to help your child, spouse, sibling, or loved one on the spectrum develop rewarding relationships; please join us at Love and Autism: A Conference with Heart on August 23-24th 2014. We know you will LOVE this event.”

To receive more information about the conference, sign up here.

Student and Military 50% off if they email info@familyguidanceandtherapy.com, or event text (619)607-1230 a picture of their student or military ID.

Regional Center Members can attend for FREE after Regional Center funding – email info@familyguidanceandtherapy.com for links.

For any questions, please contact info@familyguidanceandtherapy.com.

Free Webinar with Dr. Suzanne Goh: Getting the most out of brain-based treatments for autism

Chantal Sicile-Kira August 12, 2014

On Monday August 25th, at 6:00 pm PST (9:00 pm EST) Dr. Suzanne Goh will be participating in a two hour webinar moderated by Chantal Sicile-Kira, hosted by MomsFightingAutism. To participate in this free interactive webinar, please sign up here: MomsFightingAutism.com.

Topic: Getting the most out of brain-based treatments for autism

A wealth of therapies are now available for children with autism. Choosing among them, knowing which to prioritize, and understanding how they may interact can be a challenge for parents. This seminar will present some of the latest neurological research to help guide parents in these important decisions.

Topics that will be covered include:

– Diagnosis and managment of mitochondrial dysfunction inautism

– Neurologically-based approaches to behavior and language intervention

Guest Speaker: Dr. Suzanne Goh

Dr. Suzanne Goh is a board-certified pediatric neurologist with expertise in the evaluation and treatment of children with neurological conditions that impact brain development, cognition, and behavior.

Dr. Goh received her Bachelors of Arts degree, summa cum laude, in History and Science from Harvard University (1993-1997). She went on to attend Oxford University as a Rhodes Scholar (1997-1999). In 2004, she graduated from Harvard Medical School, cum laude. Dr. Goh completed her Pediatrics internship at Massachusetts General Hospital and her Pediatric Neurology residency at University of California San Francisco.

Following a postdoctoral fellowship in the Pediatric Brain Imaging Laboratory at Columbia University, she joined Columbia’s faculty as Assistant Professor of Clinical Neurology, with joint appointments in the Departments of Psychiatry and Neurology. At Columbia she also served as Co-Director of the Developmental Neuropsychiatry Clinic for Autism and Related Disorders where she oversaw a multi-disciplinary team of physicians and psychologists specializing in the diagnosis and treatment of children with autism.

Dr. Goh’s research has focused on mitochondrial and other metabolic disturbances in autism. She has also conducted brain imaging research to identify differences in brain circuits in children with autism. She has been affiliated as an author or reviewer with several leading neuroscience journals, including Neurology, Annals of Neurology, Pediatric Neurology, & Developmental Medicine & Child Neurology. She has taught at Harvard University, Columbia University, and the University of California San Francisco.

Dr. Goh is co-author of the book Spectacular Bond: Reaching the Child with Autism and ASD Unlocking Language: A Program to Teach Language and Communication.

For more information go to Dr. Suzanne Goh’s website.

Moderator: Chantal Sicile-Kira

Chantal Sicile-Kira’s passion for empowering others, her love of writing and her personal interest in autism has led her to become an award-winning author of five books, speaker, and leader in the field of autism. Her first award-winning book, Autism Spectrum Disorder, was updated and published in January 2014. She has been involved with autism spectrum disorders for over 25 years as both a parent and a professional on both sides of the Atlantic. A tireless advocate for those on the autism spectrum, Chantal founded Autism College in order to provide practical information and training online about autism.

Love and Autism: A Conference with Heart

Chantal Sicile-Kira August 8, 2014

Months ago I posted here that Jeremy was preparing to move this summer and that we would be blogging about the preparation and transition. Well, as you all know, life is what happens when you are making plans. I’ve been swamped with work and so has Jeremy (painting orders keep arriving…) and the actual transition takes a lot of time and energy. Perhaps when he is actually moved out 100% I’ll have time to write about the experience to help others -people keep asking us to do so.

The most important aspect of life is the relationships we have with others – family, friends, lovers. A few years ago I wrote about Jeremy’s yearning for love in Autism & Modern Love . In our book A Full Life with Autism, Jeremy and I shared our experiences in trying to help him in developing relationships or finding out more about sexuality. It wasn’t easy. It was hard to find resources then, and still today rare is the opportunity to help our loved ones on the spectrum prepare for this aspect of their life.

Finally, there is a conference – Love and Autism: A Conference with Heart – taking place in San Diego on August 23rd and 24th that is all about having healthy relationships between family members, between couples, between friends. No matter the age of your loved one, it’s an important topic to help with his or her emotional growth, necessary for all the different types of relationships possible.

I hope to see you there! Readers of this blog can get 20% off registration at sign up by using the coupon code: LOVEASD. Student and Military 50% off if they email info@familyguidanceandtherapy.com, or event text (619)607-1230 a picture of their student or military ID. Regional Center clients can attend for FREE after Regional Center funding. Email info@familyguidanceandtherapy.com for links.

Autism & modern love

Chantal Sicile-Kira August 7, 2014

Here is an article I wrote five years ago – Jeremy was 20 years old. (It first appeared in Spectrum Magazine). I’m reprinting it here now because it is still as relevant today as it was back then. Enjoy!

Jeremy is quite a catch – he’s buff from working out at the gym, has an endearing personality, and he starred in an award-winning episode of the MTV ‘True Life’ series. Never mind that he is autistic, needs help with everyday living skills, and probably always will. (In my opinion, he should be looking for a traditional wife who will take care of him, instead of a girlfriend, but I digress.)

One night recently I woke up at 3:00 am to find that all the houselights had been turned on. Usually a sound sleeper, Jeremy had been making the rounds. I heard him downstairs and decided to investigate. He was looking through my husband’s collection of architecture books. He found the one he was looking for, Las Vegas: The Fabulous 50s, and flipped it open to the section on strip clubs and showgirls. “Why are you up, Jeremy, what’s going on?” I asked. “I’m thinking about girls,” he replied.

Oh, how I miss the prepubescent years when Jeremy was examining the guitars in the music magazines and not the beautiful models holding them. Although Jeremy has been showing an interest in females for some time, he is now communicating that guitar magazines just don’t do it for him anymore. I long for the days when his choice of reading and viewing materials ran along the gamut of Dr. Seuss’s ABC and Sesame Street when he wasn’t occupied with his school work.

The show that finally got his attention away from Big Bird is Entourage, a HBO series which is a show about four good friends from Queens, N.Y., now living in Los Angeles who try to get laid and avoid relationships in-between acting gigs. There is a lot of eye candy for the guys on here (and the male actors are not so bad-looking either). Dusty, one of Jeremy’s tutors, offered us the DVD of the first season as a gift. Jeremy got hooked. When asked what he liked about it, Jeremy spelled out by pointing to letters on his letterboard, “I like that they are good friends.” So I bought him Friends, which I thought was a little tamer but still dealt with friendships, but after watching two episodes, Jeremy didn’t want to see anymore. Frankly, there isn’t enough female nudity to keep his interest. I guess it wasn’t the male bonding between the main characters on Entourage that he was focusing on.

My main concerns for Jeremy up until now have been: where will he live, what can he do to earn money, what will happen when my husband and I are no longer alive? Not a week goes by when I don’t research the possibilities and create new possible scenarios in my mind. He is now 20 years old, the same age as the young adults I worked with in a state institution for the developmentally disabled years before Jeremy was born (I guess you can catch autism by osmosis). It is one thing to help people with autism and their families with the emotional detachment of a professional; it is quite another to be caring for and planning for your own child. At the end of the day, it is the parents who are responsible, and it is difficult emotionally as well as practically to try and create a future for your loved one. For most parents of autistic kids, just providing the basic necessities of food, shelter and work for them is a constant worry. But loving caresses, physical intimacy, love, and a relationship with someone who is with you because they choose to be (not because they are related to you) are also basic necessities. I am not immune to the sadness embedded in the emails from parents of young adults writing to me for advice, asking for answers, asking me what they should do. How are they going to cope? I feel their pain. My heart aches as it mirrors my own distress. We have barely enough energy to make it through an autism-filled day, let alone plan for the tangible—and less tangible—future needs of our children.

My son learned to communicate by spelling out on a letter board and has been doing it now for about four years. The way he describes what autism is like for him, it sounds like a less severe form of “locked-in syndrome,” similar to what Jean Dominique Bauby, the editor-in-chief of Elle suffered. Bauby had a stroke and lapsed into a coma and when he woke up he could move only his left eye. He wrote his memoir, The Diving Bell and the Butterfly, blinking out a code representing the letters of the alphabet presented to him on a letterboard.

Jeremy is clear about what he feels and thinks. “Being severely autistic means being stuck in a body that doesn’t work well with no way to communicate. People ask: Do I feel emotions? Yes I do, I just can’t show them. Like when my mom helps me I am really grateful, but I can’t get my face to move. You know autism is very different from being retarded and the difference is that nothing seems different to me. I am the same as you inside. I can’t control my body but I am smart.”

Before my son could communicate his feelings, I had no idea how he felt about people and relationships. To look at his body language, which he can’t really control, you would think he does not want to be around people. Yet, he wants to connect so badly with people his own age and he struggles to find ways to communicate this. His quest to connect with friends was effectively documented on MTV: Jeremy masters assistive technology in order to have a voice, yet has difficulty staying in a room full of noisy people at his own party.

On his 19th birthday, Jeremy let me know for the first time that he was unhappy with his birthday presents. When I asked him why, he spelled, “I want a cell phone.” “What do you want with a cell phone? You are nonverbal,” I exclaimed. “I want to text my friends,” he spelled. He sees how adept his younger sister, Rebecca, is at connecting with her friends via text, and he was hoping to do the same. This cell phone business has been difficult. Those little keyboards are not easy considering the visual processing and motor problems my son has. And the only real friends he has (sadly) are his tutors. But I know he is lonely and wants to connect. So he got a cell phone.

Since Jeremy keeps bringing up girls, I suggested he join Facebook and work on his communication skills, as this is important for any kind of relationship. “Do you think I will really find a girlfriend on Facebook?” he asked. “It’s not that simple, but you will meet people and you can connect with others right from home and practice communicating,” I told him. Now, he goes on Facebook about every other day with one of his tutors. He likes to see if he has any friend requests and to comment on what he is doing. What are you doing right now? Jeremy is thinking the girls at the gym are hot.

Mark, one of his tutors, suggested that Jeremy start working out. He took Jeremy to check out different gyms. Once they had narrowed down their search, Jeremy and I went to discuss membership terms. When it came time to ask questions, mine were the usual, “What is the initial membership fee? What will the monthly payments come to?” I asked. Jeremy’s questions at the first place were a bit different. “Are the girls nice here?” he spelled out. “Are they pretty?”

As we arrived at the second place, LA Fitness, the doors flew open and more than a dozen gorgeous, shapely young women came running out. Jeremy was all smiles. We walked in and the receptionist said, “You’ve just missed the Charger Girls!” Jeremy was even happier. The Charger Girls are the cheerleaders for the San Diego Chargers football team. A Charger Girls poster is the only athletic memorabilia hanging in Jeremy’s room. “I like this place! This is where I want to come workout,” he said. Jeremy got straight to the point with the salesman. “Do the Charger Girls really work out here? Are they good at sports? What is their schedule?”

Jeremy joined LA Fitness, and goes there regularly with either Mark or Troy, another tutor. This past Christmas, Jeremy spelled out, “I want to buy a calendar with pictures of girls for Troy.” “Uhhh…okay, ask Janine,” I replied. Jeremy is, after all, over 18. Sure enough, Jeremy went to the mall with Janine (another tutor) and came back with a calendar aptly titled “Hot Buns.” I’ll leave the rest to your imagination. I’m sure he was inspired by the Charger Girls.

When Troy came over the following Wednesday as usual to take Jeremy to the gym, Jeremy gave him the calendar. Now, Troy is an ex-Navy guy, single dad of an 8-year-old girl, and works in a middle school classroom for students with aggressive behaviors. He is not your shy, withdrawn type. However, he looked perplexed when Jeremy handed him the calendar. “Jeremy, thank you, and I’m honored you thought of me, but why are you giving me this calendar?” Jeremy rocked excitedly back and forth and spelled out, “Because you are the best tutor to help my mom understand she needs to find me a girlfriend.” “Jeremy, I know you need a girlfriend, the question is how to find one,” I said. “Troy is the best tutor to help,” insisted Jeremy.

I asked Jeremy what he wants in a girlfriend. “When I think about having a girlfriend I am thinking about sex,” he explained. I asked, “Is sex all you think about?” “That really is not the main thing. I want a relationship. I want to have someone to talk to and laugh with,” he replied.

We have discussed a lot about what it means to have friendships and relationships and the meaning of love and how that is different from just having sex. He is beginning to understand the complexity and difficulty of it. Even without autism, having a loving intimate relationship with another person is not a given. “I think finding love is not easy for anyone. What I mean is that most people greatly search for love but do not find true love. I know this because I frankly see that my aunt is not married and she is a great person.”
I ask him, “What does love mean for you?” “Love for me means that someone likes my way of thinking about life and the same philosophy about living. Love is not a prisoner but it makes you realize that you care about this person more than anyone else.”

I could not have said it better myself.

While Jeremy has his eye on Entourage for inspiration, I have my sights set on another HBO show, Big Love. Having three wives, a three-house suburban home, an extended family and strong community ties – it sounds like a better model for what Jeremy’s future should look like. With three wives, Jeremy would have the love and intimacy he craves, and the women would have plenty of respite. This arrangement would also solve the housing problem and our worries about what will happen when his father and I are no longer alive. For now, I keep searching for ways for him to connect and relate with people, and to keep alive the flame of hope he carries in his heart that one day, he will find true love.