Director’s Letter: Summer 2019

Dear Friends,

Another summer is upon us and we’ve had a busy few months. April was Autism Awareness month and was filled with activities. On April 3rd, we held an open house for our brand-new Pensacola office location and were thrilled to see so many members of the community come out to show their support and to see our new space. We hosted our 3rd annual “Kickin’ it for Autism” soccer clinic with the FSU Soccer team and coaches on Sunday, April 7th and had a record turnout for this memorable event. For more details and pictures of these events, check out the articles below. Despite our best efforts during CARD Day at the Capitol in March and grass roots efforts before CARD Day, the statewide CARD centers did not receive an increase in funding for the fifth year in a row. We are grateful that we did not lose any funding but will all be trying to find a way to continue the level of support that we strive to provide to our steadily increasing client population. We appreciate the input and effort you provided to your local legislators to share what CARD has done for you and hope we can count on your support next year. As we enter into the middle of the summer, we hope the articles from our consultants offer useful information about keeping some semblance of a routine and how to use this time to foster independence. We’d love to hear stories from our clients about how you spent your summer and what helped you make the summer fun and fruitful. Share your stories with us by emailing: autism@med.fsu.edu. We’d love to share some of your stories in our next newsletter. We are still collecting feedback from our clients and the professionals who serve them via our new Needs Assessment surveys. We would truly appreciate you taking the time to fill out the surveys so we know how we can best serve you in the coming year. Please see the article below to learn how you can help. Wishing you all a Happy Independence Day and hope the rest of your summer provides a bit of relaxation from the demands of the school year.

Sincerely,
Catherine Zenko, M.S., CCC-SLP
Director, FSU CARD
Catherine.zenko@med.fsu.edu

Features

3rd Annual Kickin’ It for Autism- A Huge Success! By: Megan Taber What a ball! The 3rd Annual “Kickin’ It for Autism” soccer clinic in partnership with the FSU Soccer team and coaches was a great success. The April 7th event had over 300 attendees and raised over $2,000 for the FSU Autism Institute. On behalf of the FSU Autism Institute and FSU CARD staff, we want to extend a heart-felt thank you to our participants and volunteers. We would also like to thank our community partners, without whom the event would not be possible: ESPN Radio Tallahassee, Technical Recruiting Solutions (TRS), Lindamood Bell, Florida Elite Soccer Association, Star 98.9, Dunkin’ Donuts, Hungry Howie’s Pizza, Gordo’s Cuban Cuisine, North Florida Spine and Wellness, Springbrook Behavioral Health, Tiniest Empire Cupcakes, and Lucky’s Market. It was the vision of the planning committee to raise awareness of our organization and continue our efforts in community outreach. Your contribution helped make our vision a reality. As we continue to grow, please know that partnerships with our community are vital to the success of the FSU Autism Institute and our service programs. You are truly appreciated for your sincere generosity and support of our organization. Please visit our Facebook page for photos (https://bit.ly/2JdGPzi) , and the FSU Soccer Facebook page for photos courtesy of the official FSU Athletics Photographer, Larry Novey (https://bit.ly/2FAOM0u). We look forward to seeing everyone next year!

Pensacola Open House On April 3rd, the Pensacola CARD office officially opened the doors to our new office. We are so excited about having our own unique space to meet with clients and families, host trainings and groups, and have a wonderful area solely for our lending library of over 300 books and resources. We also have a dedicated space for “Make and Takes” where clients, families, educators, and community organizations can come to create their own visual supports! We are sharing our new space with the First Words Project, an FSU Autism Institute project that is dedicated to improve the early identification of autism. We hope that everyone will visit us to experience our new office and all we do here in Pensacola!

Summer Training Institute on Autism, Florida State University

O2019 Summer Institute on Autism Recap By: Catherine Zenko The 2019 Summer Institute on Autism was held in Tallahassee June 19-21, 2019 at the FSU Conference Center. We were thrilled to have three nationally-renowned speakers share their knowledge with our audience of educators, psychologists, speech-language pathologists, parents, guidance counselors, and the FSU Autism Institute Staff. On Wednesday, Dr. Brian Boyd from the University of Kansas (pictured) talked about Evidence-Based and Promising Practices for Children with Autism Spectrum Disorder: Interventions for Core Symptoms. On Thursday, Dr. Susan Levy, a developmental pediatrician from the University of Pennsylvania and the Children’s Hospital of Philadelphia discussed Challenges of Treatment of Autism Spectrum Disorder. On Friday, Dr. Zachary Warren from Vanderbilt University taught the audience about Innovations in Screening, Diagnosis, and Treatment of Autism Spectrum Disorder. The Paisley Café, which is one of our Autism-Friendly Businesses provided the delicious lunches and snacks during the institute. Their staff was amazing and included Kevin Graham who is featured in the Autism at Work section of this newsletter. Thursday afternoon the audience was treated to a panel discussion with the owners and staff at the Paisley Café who shared their experience working with Kevin and how it has impacted the entire culture at the restaurant.

Save the Date

Save the Date The 27th Statewide Annual CARD Autism Conference will be on January 18-20, 2020 at the Florida Hotel and Conference Center in Orlando, Florida. Registration for the conference opens in July 2019. Click here for more information: http://cardconference.info/

Articles: CARD Consultant Column

Routine for the summer? Absolutely! By: Cindy Golden

Typically, the summer season is a time of rest and relaxation. It is a time with no schedules, no deadlines, and for the most part no set time to get up or go to bed. It is a time to experience new adventures, new people and learn new things. But, for some students this can also be a time where the unknown is a scary thing. Imagine a day with no routine schedule. You wake up with the stress of not knowing the activities you will be involved with, the behavioral expectations of the day, the social requirements you will have to encounter, and the sensory elements you will have to endure. Everything has suddenly changed. The schedule you found comforting and safe has now gone away. The unpredictability of the day’s routine may escalate into a stressful situation. Autism has been described as a “disorder of prediction.” Being able to predict upcoming events and think ahead brings comfort and the feeling of safety. Persons with autism may need an additional amount of time to process the requirements of upcoming events and activities and routine may play a part in bringing order to the chaotic stress of an unpredictable environment. So do you have to stick to a stressful, inflexible routine during the summer months? Absolutely not! It is also important to teach flexibility. But you can keep a general schedule or routine with blocks of time for events. For example: Monday morning is “down time” with a choice of activities (sleep in, watch tv, play video games, play in the pool, clean room, etc.) or Friday evening is fun family time with a choice of activities (movie at home, ball game, eating out, visiting family, etc.). This is a routine of sorts and will help bring predictability to a big span of time. Make sure to use some type of visual supports in the creation of the schedule, whether it be words or picture symbols. Keep a common area for the placement of the schedule, like the refrigerator or on a bulletin board by the back door. If there is a day or time period in which you aren’t sure about the activity that is planned then just place a “?” on the schedule. This will help to at least alert the child that there is an activity coming up but it is either a choice for the family or to be determined. Again it brings order to the unknown. If you want a great website that will assist in creating the visual schedule here is one to check out: https://connectability.ca/category/kids/. Just click the Visuals Engine category to create a visual schedule. Reference Sinha, P., Kjelgaard, M. M., Gandhi, T. K., Tsourides, K., Cardinaux, A. L., Pantazis, D., … Held, R. M. (2014). Autism as a disorder of prediction. Proceedings of the National Academy of Sciences of the United States of America, 111(42), 15220- 15225. doi:10.1073/pnas.1416797111

Independence and Autism: Public Mobility, By: Crystal Grey-Hewitt

My son recently reached sixteen years old. I cannot entirely figure out how this happened, he was literally a baby yesterday. With this age, however, comes a developmental task that most people his age are gleefully embracing: the taking of the car keys. Teenagers often treat those car keys like the One Ring in the Lord of the Rings; they rule all things. However, I recently spent a few days in New York City, and was really interested in how easily people there negotiate public transport, even children. This is no doubt rooted in the fact that public transportation is the main mode in those kinds of congested urban environments. Here are a few of the steps that can be taken in order to start teaching a person how to negotiate the world of public transport. 1. Get them a phone and make sure that they understand its main purpose. Many teenagers have grown up playing games on their parents’ phones. It will need to be stressed that this phone is a tool, not just a toy. Teach them how to program in numbers, use the timer and maps functions, and have them practice calling and texting. 2. Introduce them to the website for the public transportation in your area. Many of them have a “Plan My Trip” function which shows you how to get from Point A to Point B. 3. Write a social story about using public transportation. Make sure that appropriate behaviors are highlighted (not standing too close, what to do when it’s crowded, where to sit, how to request a stop). 4. Practice. Pick out a prescribed time and place, and plan out a trip with a parent or trusted adult with them, where they are in charge of the trip. When they can negotiate that, have them do a trip where perhaps someone follows the transport in order to monitor. Eventually, have them do it on their own, with the expectation that they text someone in order to let them know they arrived safely. Being able to negotiate public transportation is a crucial step in enhancing both independence and leisure skills. If you have questions about how to work on these skills, please contact your local CARD consultant and they would be glad to assist.

Needs Assessment Survey: We Need Your Input! By: Taylor Fabrega

Please help FSU CARD gather important feedback by completing our new and improved needs assessment survey for the eighteen counties that we serve. The responses that we receive from our clients and their families, as well as our community partners, will give us the data necessary to improve our services. Input from stakeholders will also influence our plans for the coming years. Below, you will find two links for the two surveys we created to capture the differing needs that our clients and collaborators have when working with CARD. Please fill out whichever survey best applies to you. We appreciate your time and look forward to your feedback! CARD Clients/Families: FSU CARD Client/Family Needs Assessment Survey (https://fsu.qualtrics.com/jfe/form/SV_8rccOuGiNgEBAm9) Community Providers: FSU CARD Community Providers Needs Assessment Survey (https://fsu.qualtrics.com/jfe/form/SV_5sUhpjCMkMrT9Pv) If you are a CARD Client and we haven’t heard from you in the past year, please fill out our Annual Update form located on our Contacts/Forms page HERE<<, so we can keep our database up-to-date! Please note: If you need assistance from FSU CARD, please call or email us and request help: autism@med.fsu.edu; 1-800-769-7926.

Client Corner

Forms:

Intake/Referrals >>
Request for Technical Assistance >>
Public Awareness Request >>
Training Request Form >>
Annual Update Form >>

Free access to the Autism Navigator® How-To Guide for Families

This online course is full of video libraries to illustrate how to promote learning and development of their child with ASD.  For more information about the Autism Navigator® How-To Guide for Families, please view this brochure or visit the website: http://www.autismnavigator.com/how-to-guide/.  If you are a parent of a young child who is registered with FSU CARD and would like to request a code to the How-To Guide for Families, please click this link. In addition to the online course, we will be offering the How-To Guided Tour which is a series of weekly online meetings led by FSU CARD and Autism Institute Staff. Caregivers can log in every week with other families and enjoy the guided tour through the online course, discussions about the topics covered, and an opportunity to ask questions. A new How-To Guided Tour will start this spring as soon as we have enough interested families, so be sure to get your FREE code and enroll before the Guided Tour starts! LEARN MORE

Share with CARD!

“CARD is continuously looking for clients who would like to share their art or writing pieces in our quarterly newsletter. If you are interested in sharing your work for our next issue, please send an image electronically to Tammy Dasher (tammy.dasher@med.fsu.edu) All pieces should be titled. Select pieces will be chosen for each edition of the newsletter; artists and authors will be notified if their piece is chosen.”

Autism at Work

By: Allison Leatzow
When you walk through the doors of the Paisley Café in Midtown Tallahassee, you’ll be greeted by host extraordinaire Kevin Graham, otherwise known as “The Host with the Most.” He’s developed quite the reputation for his friendly and inviting personality when hungry patrons visit the cafe. Upon meeting him, you might be surprised to learn this is not the same Kevin from just a few years ago. When Paisley owner, Kiersten Lee, first met and learned of his autism, he was working in the upstairs eatery and he’d come down to visit with Kiersten. In her naturally loving and nurturing way, she began working with him on culinary skills and the people skills needed to be successful. He went from barely being able to look someone in the eye to one of the most engaging people you’d ever meet. She infused her infectious optimism into everything she taught him, which in turn built up his self-esteem, confidence, and the positive attitude he has now. He’s become an expected fixture at Paisley Café that returning guests look forward to seeing at each visit. FSU CARD became involved last year when Kiersten reached out requesting training for staff on best ways to support someone with autism, regardless if it’s an employee or a customer. CARD had just rolled out their Autism-Friendly Business Initiative giving businesses strategies and tools to support someone with autism coupled with follow-up ensuring continued support. Paisley was actually the first business in Tallahassee to receive this specific training from CARD and they were eager and ready to learn! All of the staff attending were noticeably interested, engaged, full of questions, and eager to have a better understanding of autism. They’ve continued consulting with CARD to troubleshoot, share successes, and plan more involvement in the future. The teamwork of Paisley Café and FSU CARD will help ensure everyone who passes through Paisley’s door is served some “love on a plate.”

Artists in Autism Series: T-Rev & Art ExhibitionBy: Allison Leatzow

“He’s such a soulful singer…he sings from the heart” are comments you’ll hear throughout the crowd when Trevor Williams performs his music. As a young child, he was always humming tunes, taking up piano as he got older, and then made the leap to guitar accompanied with his melodic vocals. He’s been involved with the American Idol franchise, has performed on a local news network, and does live performances at venues about town. Trevor, otherwise known as T-Rev to his fans, recently performed for patrons of the FSU Museum of Fine Art (MoFA) at the Arts4All Florida Artist’s Exhibition: Access, Opportunity, and Inclusion opening night reception. While surrounded by inspiring and diverse artwork, T-Rev commenced the evening covering songs by some of his favorite artists and then captivated the gathering with two of his originals, “How it’s Gonna Be” and “Blame.” He pulled in the audience by providing his inspirations for both his originals. “How It’s Gonna Be” was written while he was anxiously coming to terms of being diagnosed with diabetes. He noted it became a metaphor for his life that no matter how hard things get, he will come through in the end. Then there was the time he had his first love and subsequent first heartbreak. “Blame” was a cathartic way for him to get over that pain and he now feels it’s a fun, energetic song. We can’t wait to see what else T-Rev has in store for us as he pursues his musical career! Keep him in mind for your next social event. He can be reached through Facebook Messenger at m.me/TRevMusicTallahassee or email at trevmusicxpert@gmail.com. The Arts4All Florida Art Exhibit, curated by Susan Baldino, featured a collection of work by artists with varying abilities. Chris Mendocino, Austin Lubetkin, Crystal Scott, and Madison Hongyee from CARD all had pieces featured. The evening drew quite a crowd to MoFA’s Walmsley Gallery to see their work and all the others that were in the month-long display.

IT’S NOT ‘PICKY EATING’: 5 STRATEGIES FOR SENSORY FOOD SENSITIVITIES March 23, 2017By: Laura Russin Laura shares tips on how to introduce new foods to your child with sensory sensitivities in a supportive way. This post originally appeared on her blog and is re-posted on the OAR site. Click the link below to read the full article. https://researchautism.org/its-not-picky-eating-5-strategies-for-sensory-food-sensitivities

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