Frog Legs for Breakfast – Camping a la Francaise

People  often  ask how did I build the character I have to  survive all the challenges I’ve faced as a parent of a young adult with autism, including ‘negotiating’ with the systems in place to help us?  The answer is simple: I survived camping.

chantal snake

The word ‘camping’ conjures up different images for everyone. Mention camping to my husband   Daniel –  whose mother was  a  Puerto Rican from Manhattan and his father a Romanian from Detroit-  and here is what he pictures:

A 1960’s green station wagon, parked in a rest stop,  close to  flushing toilets, hot running water, and a Greek diner. His mom and sister sleep in the station wagon where the seats have been folded down, a mattress laid on top to make a nice cozy bed with blankets and fluffy pillows. Screens cover the open windows so the bugs can’t get in. Daniel and his father sleep in a 4 person tent pitched nearby. In the morning they rise and stretch, refresh themsleves in the cozy warm rest stop bathroom and get dressed. They drive to the closest Greek Diner or Howard Johnson, sit in a booth  and have a nice warm breakfast and fresh coffee.

My parents were French Alpinists before becoming French immigrants on Staten Island. They treked in the Alps carrying what they needed to survive in the wilds and sleeping in two-man  pup tents they had sewn together.  Camping meant battling the elements.

So my visual of camping is somewhat different than my husband’s. I see six children covered in soot sharing three small faded old handmade pup tents in a former cow pasture –  evidenced by the cow patties that are left behind – surrounded by woods, 15 miles away from any other humans.

My father was a project manager for a construction firm in New York.  Eventually he was  assigned overseeing the construction of a power plant  in Louisville, Kentucky.  During the school year he commuted back and forth from Staten Island to Kentucky. But during the summer, my parents would pack us all up and take us camping for two months in the Louisville area so that we could be together. For two months each of  three summers, the cow pasture is home.

In the middle of the field is a one room old, rickety wooden shack where maman and papa sleep and where we all take cover during scary lightening and thunderstorms punctuated by torrential downpours of rain which reduces the cow field (and cow patties) to a mud pond. We keep our supplies in the leaky shack  and every other Sunday a rural roman catholic priest comes to celebrate mass for us (now that I think of it, maybe he was giving us last rites).

At a safe distance from the shack and tents is the one-hole wooden outhouse all eight of us share. There are no lights, and when use the outhouse we take a flashlight even in daytime to make sure no snakes are waiting for us in the hole where we sit to do our duty.

There is a large campfire maman uses to cook and heat water  to fulfill the basic needs of eight people, and next to it a picnic table where we eat. The pots on the campfire are old, and dented, stained black from the soot  which emenates from the  campfire which is kept lit 24/7 when it is not raining. Soot from the fire covers everything we have at the campsite. The only running water besides torrential rains is the stream below where my dad takes us frogging on moonlit nights.

The worst part about camping is not the frogging; it’s the sleeping in the narrow short pup tent. Every night I crawl in to my side of the tent, the left side, careful not to knock down the short pole in the middle of the tent holding up the ceiling. The tent is very low to the ground and the tent’s ceiling at it’s highest point is only 12 inches away from my face if I am lying on my back.   As a little girl, I can handle snakes but I absolutely abhor spiders; I have nightmares about them, usually the black widow sort.

Unfortunately, every morning when I wake up, the inside surface of  my tent which I share with one of my sisters,  is full of between 10 to 20 Daddy Long Legged spiders. Up close, these spiders look like one giant eye with  8 skinny, long legs coming out of that eye. Here is my first dilemma every morning upon waking up: I must get out of my sleeping bag in the narrow short tent without touching the canvas siding of the tent, because if I do the spiders will start moving.  And I am certain they will crawl all over me.  The second dilema is deciding: Do I stay face-down  as I carefully crawl out from the tent backwards so I can’t see the spiders but I imagine  them jumping on to my back  as I try to leave the tent?  Or do I roll over on to my back and  shuffle out of the tent feet first, with my eyes wide open so I can keep my eyes on the spiders, terrorized that at any moment one or more of them will jump on me?

My siblings, who know about my fear of spiders are relentless. Every morning before eating breakfast we must  air out our sleeping bags and empty the tents. And every morning one of them, ususally my older brother, grabs a spider by one of its legs and chases me around the campsite. I quickly learn to run fast, very fast. Once I am so terrified that I run all the way to the closest dirt road a quarter of a mile away before realizing I am wearing nothing but my big white panties. No matter that there is no one around for miles to see me, I am mortified.

After the spider chase torture ritual every morning, it is time for breakfast cooked over an open fire. If  we are lucky, we have frog legs for breakfast. There is a steep path leading to the stream below, which becomes a mudslide whenever it rains. At the bottom of the path, an old wooden rowboat is tethered to one of the trees that overhangs the river.  The rowboat is so old  that most of the  paint is peeled off, but you can tell that at one time it had been green. The water in the stream is murky and the sun barely ever reaches through the large tree branches that hang over it, tree roots sticking out making perfect resting places for all types of reptiles and insects.

Occasionally, when the moon is bright my dad takes take us ‘frogging.’ There are parts of frogging I really like: getting into the rowboat at night with the moon shining and fireflys  glowing,  insects buzzing, and feeling like we are going on a real adventure.  What I don’t like is the killing the frog bit. The idea behind frogging is to have frog legs for breakfast. As our parents never cease to remind us,

Papa: “ Cuisses de grenouilles, Frog legs are an expensive delicacy served in the finest of of restaurants in France. We are so lucky to have all these delicacies hopping around  for free, waiting to be harvested for our dining pleasure.”

I never can understand why my friends recoil when I told them about my frogging experience.  I imagine they  haven’t had  the good fortune of tasting frog legs cooked over an open campfire.  They didn’t know what they are missing.

The oldest four children climb into the rowboat with my dad, and we each have our job to do. Two of us row the creaky old boat, one of us  holds a flashlight and shines it over the river looking for frogs, one of us carries the burlap bag, and my dad holds the pitchfork. The pitchfork is smaller that your regular farmer’s pitchfork,   it looks more like  the miniature pitchforks sold with devil’s costumers around Halloween. But the prongs on this pitchfork  are real metal, thin and sharp.

Before we get into the rowboat, my siblings and I fight over who gets to do what. Everyone’s favorite job is holding the flashlight. It beats bagging the frogs and is less strenuous than rowing. It’s dark on the river, with overhanging branches of the trees blocking any moonlight. I like being in control of the flashlight because then I can shine the light  and  actually see – if I want to- all the weird things out there making noises. Whoever controls the flashlight controls what everyone sees because it is pitch black on the river.

We all sit quietly in the rowboat and wait till we hear the croaking  of  frogs and then  I turn the flashlight on the frog and aim the beam  right in  his eyes. The frog is blinded by the light, and he sits frozen, unable to move. My sisters  row the boat closer to the poor frog as I keep the beam of light steadfastedly aimed at the frog’s  eyes. Papa lifts the pitchfork up and spears the frog in his belly and my brother quickly moves in with the burlap bag and voila! in the burlap bag he goes! We always catch at least a dozen, we are 8 people and a pair of of frog legs  does not provide much nourishment – as delicacies rarely do.

Yes indeed, camping is good training for facing your demons.

 

One Person’s Experience with The AGI Residential/Daily Living Support Online Course

Jeremy Sicile-Kira wrote the following blogpost in January 2014. He had the opportunity to have two new staff members take the The AGI Residential/Daily Living Support Online Course, which provides best and evidence-based practices for those who support the daily-living needs of transition aged students, young adults and adults with autism and related disabilities. Jeremy wrote about his experience and his thoughts about the curriculum. Jeremy recently reached his dream of moving out into his own place. Jeremy’s  comments below, were originally published in an Autism Research Institute newsletter. Jeremy is the co-author of A Full Life with Autism


Jeremy and JL
Kindly having well-trained Direct Support Providers is frankly the key to having a successful life for me and others like me. Two new direct support providers who joined my team nicely had the opportunity to take the online AGI Residential/Daily Living Support course. Frankly they learned more about autism then I could kindly teach them. Basically the Autistic Global Initiative (AGI) course greatly gave them a really firm foundation for understanding why I was the way I am. The course justly explains key elements about how to figure out why we act the way we do and how to best support a person with autism of different abilities. Kindly general information about autism is not always nicely explained in training given by organizations who hire staff to support people like me or other types of autism. Often training for support staff is about legal, medical, safety and health issues. Kindly they may train on how to handle behaviors, but not about why we have those behaviors. Kindly the support staff who went through the AGI training frankly had a better grasp of self determination than before they started working with me.

The new staff following the course learned nicely faster and more completely how self determination in reality applied to my life and justly how it meant they had to kindly learn all the best ways to support me.

I am very grateful that my two new staff members had this opportunity. They greatly learned how to insure that my dearly-needed supports were in use. Frankly having plans is the most important support. The staff help me to schedule my time so I have work, chores, learning, and social activities. Mixed in to my schedule are strategies to help me stay regulated. Greatly my mother in the past helped with this scheduling; now greatly trained staff can help me build my own schedule. Having a plan means believing that I very nicely know how to prepare myself mentally for the day. Having a plan is important to avoid stress and anxiety.

Justly the very kind support staff behave better when they have an understanding of what causes difficulties for me. Greatly my hope is that I won’t very much need to be supported every day in the future, and that I can become more independent. The AGI course gave the new staff a better understanding of techniques to help me learn how to physically move my body to learn and do functional living skills. Truly my body gets stuck. This means that when I try to move it does not respond to my command. Greatly the staff made conversational remarks about the course and I could tell they were learning more and greatly improved every week.Justly I noticed that their confidence grew as their knowledge did. Nicely when staff feel comfortable, I do as well. Justly the staff understands how to best support me when I experience anxiety and PTSD. Frankly nice staff make me feel safer when I’m out because I know they can help me stay calm. My comfort level goes up when I feel safe.

Greatly my mom does not need to train new staff who took the AGI course about autism, only about Jeremy-specific training that I want my support staff to have. Truly I feel more happy knowing that when I move out to my own place there is a program that can help with training new staff.

Jeremy and Handsome

 

Autism & modern love

Jeremy Sicile-Kira

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.

Free Online Autism Conference April 26th & 27th: Focus is on Transition to Adulthood

 Moms Fighting Autism and Autism College are partnering up to offer a free virtual conference on Saturday April 26th and Sunday April 27th from 8:00 AM to 5:30 PM PST. This year’s theme is: Autism from Adolescence to Adulthood, Preparing for Independence and Growth. Keynote speaker Chantal Sicile-Kira, author of five award-winning books on autism, will be speaking on Preparing for the Transition to Adulthood.  Speakers include: Brian King, author of Strategies for Building Successful Relationships with People on the Autism Spectrum, Greg Zibricky,CFP, author of F.A.M.I.L.Y. Autism Guide: Your Financial Blueprint for Autism; Janet Lawson and Dan Swearingen founders of Autistry Studios, on Building a Working ASD Community; and Wendy Partridge, Executive Director of Heroes of the Game, Inc., speaking on “Work Incentives Planning and Assistance.” 

011_3“The transition to adult life can be a rude awakening for parents as well as the young adult,” said autism expert and founder of AutismCollege.com, Chantal Sicile-Kira. “The unemployment rate for adults with autism is very high, and we can do a better job of preparing them during their school years. Listening to these speakers is a great way to get empowered with the information parents need to know.”

 We know that parents and professionals don’t always have the ability to attend conferences due to time, geographical location, or finances, and hope you’ll consider joining us virtually. Registration is completely free, and attendees can use their computers or smartphones to both listen to the talks as well as post questions live to the presenters. Readers may sign up for the conference here.

“In honor of Autism Awareness month, I want to provide free practical information on autism to all who need it,” said Ernest Priestly, Founder of MomsFightingAutism.com. “For many parents, it is difficult to leave home to attend conferences. A virtual conference is the best way for moms, dads, grandparents and teachers to get information they need without leaving their home. I’m glad I can help make their lives a little easier.”

About Moms Fighting Autism: MomsFightingAutism.com hosts webinars for mothers of children on the autism spectrum and anyone interested in learning more about autism. MomsFightingAutism.com provides tools and services that allow members to connect, support and learn from each other.

About Autism College: AutismCollege.com, founded by the author Chantal Sicile-Kira, provides practical information and training, on-line or in person based on her books.

Preparing to Move : Will mom survive the empty autism nest?

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

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

When my daughter Rebecca moved away to college four years ago, it was difficult. At the time I joked that she left me living with two non-verbals (my husband and Jeremy) but that is what it felt like. Rebecca was vivacious, energetic, very verbal and social, with friends in and out of the house. I loved hearing the laughter (the sweetest sound in the world) emanating from her bedroom or the family room downstairs.

The other difficulty was the concern I had, like most parents, of how your teenager will do being away from home. Will she make wise choices? Have we taught her enough about staying safe without making her paranoid? Have we taught her enough about staying organized, doing household chores and cooking so that she will be a good roommate once she moves out of the dormitory? (To be honest, she never showed any enthusiasm for any household activities, except perhaps baking chocolate chip cookies from scratch).

Now it is Jeremy’s turn to move out, and I am torn by many emotions. Before, Jeremy’s move was a theoretical construct. Now it is official; word came from the powers that be in recent days. We have been preparing for this moment for a long time; in fact we have been advocating for many years for this to happen. I’ve been bracing myself for this moment for some time, and it is finally here. Jeremy and I have written abut this in A Full Life with Autism, and I’ve discussed it some in Autism Spectrum Disorder (revised).

On the one hand, I am not getting any younger and I am really exhausted from the level of care and supervision Jeremy needs, as well as supporting him in reaching his goals as a writer, advocate and artist. It would be OK if all I did was support Jeremy, but I must earn a living as well, and exercise to stay healthy and strong. We are lucky in that we have some help from the system that pays for some hours of respite and support to Jeremy. But that requires my time and energy – finding, training, supervising staff and teaching Jeremy to have a larger role in that. Thus why I have little downtime or social life.

But the wonderful support staff who are in and out of here with Jeremy for part of the day have somewhat filled  part of the void left by Rebecca in terms of young energy and vivaciousness (obviously they could never replace her as my daughter!). I realize when Jeremy moves out, not only will I miss him, but I will miss the support staff and Handsome the dog. As a writer, I have at times missed the lack of privacy with people and Jeremy coming and going in the house, but I realize that the Afternoon Angels and Jeremy’s Team have been an important part of my social life for some time now. And when Jeremy goes, so will they.

As we start telling friends and family Jeremy is really moving within the next six months, the most common reaction is “you won’t know what to do with yourself.” Actually, I have a pretty good idea – focus on my health and exercise, work on a pilot program that is currently in concept stage, accept more speaking gigs, earn more money to help pay for Jeremy’s housing costs (and Rebecca’s college loans),  write that book I have always wanted to write (it doesn’t have autism in the title!), and sleep a bit more. Most of all, I will be able to live spontaneously: not have to check the schedule to make sure I have ‘Jeremy coverage’ before saying yes to some much needed ‘me’ time – taking a walk, having a cup of coffee or glass of wine with a friend, going to the movies with my husband.

I know it will not be easy emotionally speaking – I will miss Jeremy, just as I missed Rebecca when she moved away (and still miss her). But I know we are very connected, and nothing will ever change that.

Jeremy and Rebecca Sicile-Kira,  college students

Jeremy and Rebecca Sicile-Kira,
college students

 

What Does your Kid Want to Be When He or She Grows Up? Options Available at FRED Conference

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Every child has dreams and every parent wants to help them come true – and parents of children who are different (but not less) are no different. Only thing is, we need to be looking at options and working together to create some where none exist.

That’s why the national FRED conference is so important. Meeting other like-minded people to create a future worth dreaming about is empowering. And it is never too early to start. Last year, Jeremy contributed on a panel and this year it’s my turn.  There will be panels on housing models, employment, safety and well-being, and self-care (for the parents – we need to take care of ourselves, too!)

FRED 2014 is taking place Friday March 28 and Saturday March 29, at the LAX Marriott in Los Angeles. For more information about the experts (including many self-advocates) donating their time wisdom, experience and hope, visit www.FREDconference.org. I’m counting on seeing you there!

Meanwhile, enjoy this announcement from FRED about this year’s FRED Pioneer Award Winner, Kevin McGuire.

AbleRoad Founder and Disability Rights Leader Named as FRED Pioneer Award Winner

Manhattan Beach, Calif. — February 27, 2014 — Today the FRED Conference announced that Kevin McGuire is the 2014 recipient of the FRED Pioneer Award. This award is given to the individual or organization that best embodies innovation and advancement in the field of disability rights.

The FRED nomination committee selected Kevin McGuire in recognition of his pioneering work launching AbleRoad, the most comprehensive website and app designed to connect people with accessible places, and for his lifelong impact in the disabilities field. Kevin McGuire will receive the award in Los Angeles on March 28th when he serves as the FRED Conference keynote speaker.

“We are very proud to have Kevin McGuire as this year’s winner. He is a role model for so many in the disability community, both personally and professionally”, said FRED Director Mari-Anne Kehler. “Kevin has led by example to show that disabilities are not limitations, and that with vision and hard work anyone can succeed, and exceed, in life. He is a real visionary and true pioneer.”

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AbleRoad is a website and a smartphone app that allows users to review any public space – from restaurants and theaters to parks, hospitals and concert venues – and rate it for how well it accommodates people with disabilities or those with medical conditions. Users can upload photos and leave detailed reviews for others to read, allowing people with disabilities, their friends and caregivers to research whether a certain business or place is accessible, and to choose the places they want to patronize. AbleRoad also helps businesses understand the challenges their location may pose to those who use a wheelchair or have other mobility, vision, hearing or cognitive disabilities, and persuade them to make changes to improve their accessibility.

McGuire is also CEO and Founder of McGuire Associates, Inc., the nation’s leading consulting firm specializing in compliance with disability laws. His clients include high profile venues such as the Staples Center and Gillette Stadium. He has produced an ADA customer service training video for frontline employees, and a training video on how to evacuate people with disabilities from buildings during emergencies, which have been sold worldwide. He has used a wheelchair since age 7, when an intoxicated driver struck him. He has recently written a novel, PATRICK, based on his experiences growing up as a wheelchair user.

This is the second annual FRED Pioneer Award. Last year’s recipient was Pegi Young, who along with her husband, rocker Neil Young, founded The Bridge School for students with disabilities.

About FRED Conference: FRED is the premier organization to galvanize leaders focused to advance and enhance the futures of adults with disabilities. FRED is dedicated to the idea that all individuals deserve to live their passions, and determine their choice of the future they live. FRED brings top thinkers: experts, families, and self-advocates, together to share leading practices and accelerate approaches to building those futures. www.FREDconference.org

Preparing to Move: A Full life with Autism

Jeremy and Handsome

Jeremy, who is 25, is moving out into his own place within the year. For those that don’t know Jeremy, he communicates by typing and has many sensori-motor challenges.  I first started writing about him in  Autism Spectrum Disorder (Revised)  (Penguin 20014). We are all looking forward to this move. Transitioning to being an independent adult starts early in life and Jeremy has been working on learning different functional living skills since he was little.  In the book  A Full Life with Autism (Macmillan 2012), Jeremy described how having his own life and independence was important to him.

Over the next months we’ll be describing what Jeremy is doing to prepare for his move. Besides improving upon or learning new living skills, there is all that needs to be done for his self-employment initiative as an artist and advocate (visit his website, Jeremy’s Vision), and his volunteer work.  Jeremy is also trying to improve upon his social life, and we’ll report upon that as well.

When Jeremy was little, my husband and I were told to put him in an institution, and to get on with our lives.  That was never an option for us. Instead I worked hard at helping him reach his potential so he could live a life of his choosing.  We hope that our experiences shared here will encourage parents and educators to realize that even those who appear to be very impacted can learn to do more, no matter their age. The window of opportunity for learning never closes. Never give up! Perhaps you will have your own stories to share; we look forward to reading your comments.