Pathfinder The
Improving
the lives of
individuals
with autism – and their families – through
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Inside This Issue Program Highlights... 2 Parents Share Tips for Summer Fun... 3 The Value of a Good Assessment... 4 Announcements & Updates... 5 Pathfinders’ Volunteers... 6 Mark Your Calendars... 7
Volume 7, No. 1 Spring 2008
Brian Dives into Fun with New Experiences at Camp
By Ford Waggoner, Easter Seals
“Can I paddle?” a blond, blue-eyed camper named Brian asks his counselor. It is summer at Easter Seals’ Camp Fairlee Manor, and the camp is bursting with excitement and activity during two weeklong sessions for children and young adults with autism. “Put on your life vest first,” replies Brian’s counselor, Dominic. After a few minutes of preparation, the two jump into the canoe and paddle off on another adventure.
children with autism gives campers oneon-one counselor supervision, ensuring the attention they need to maximize their camp experience. The goal is for campers to take steps towards independence and experience an improved sense of self-esteem. Along with all of the exciting things the camp has offered, it now has a Sensory room, designed for campers with autism. It has been proven very affective for calming campers with inappropriate or disruptive behavior.
Brian’s father, Rudy, was Some of excited to hear Brian’s favorite about Camp activities Fairlee’s special include going autism program. on hay rides, Brian - and fellow campers - enjoy a dip in the pool “When we swimming in the dropped Brian off, Dominic asked him pool, and visiting the barn animals. Dominic also motivates Brian to help out with some if he wanted to go canoeing, and he just chores in the Dining Hall and around camp. hit the ground running,” Rudy says. “Brian is like a little brother to me,” says “He’s a water rat, so he just loves camp.” Dominic, age 20, from England. “The other Water sports are just one of the many counselors and I give him the support he activities that can benefit children with needs.” disabilities who attend camp. There are While their kids are at camp, family nature tours, campfire sing-a-longs, rock members can have a break from their care climbing, arts and crafts, a variety of giving responsibilities. For many, the week sports, and a high ropes course. their child is at camp gives families Coming to a camp that can accommodate additional time to interact with other family their needs most often give children with members or attend to their needs. While the autism an opportunity to develop new skills campers enjoy all the advantages camps by participating in activities they might not continued on page 6, with a camp listing on page 7 otherwise have. The special sessions for
Pathfinders’ Program Highlights April Awareness Campaign
This year, Pathfinders for Autism Awareness Campaign will kick off in March with a bookmark distribution in every library in the state. The initiative is sponsored by Brookes Publishing, in partnership with Ask Us Now!, a cooperative of Maryland Libraries. The campaign will feature bookmarks promoting Pathfinders Resource Center and campaign partners, information about local autism resources and a copy of Paula Kluth’s new book, Just Give Him the Whale!. A copy of the book was generously donated to every library in Maryland by Brookes Publishing. “As a Maryland-based company committed to providing resources that help children with autism meet their potential, Brookes Publishing is proud to support the Pathfinders for Autism Awareness Campaign, in partnership with Ask Us Now!,” says Jessica Reighard, Director of Marketing. Pathfinders is also proud to announce that we are now an official member of Ask Us Now!, a 24-hour/7-day per week, online interactive service. It uses the expertise of librarians to provide the residents and students of Maryland with answers to questions, research guidance, and with help navigating the Internet. As a member, Pathfinders will receive e-mail questions from users and referrals from the Librarians who staff the 24/7 on-line chat. We are very excited about the opportunity to build awareness and help more families and professionals around the clock. Of course, Pathfinders will be very active in April with media promotion and events throughout the month. Help us kick off the month with the 3rd Annual Baltimore Comedy Fest on April 4 & 5 in Baltimore. The awareness continues on April 12 with the Towson Jaycees Shrimp Feast in Towson and “Band Together for Autism” in Cecil County. All events promise lots of fun and laughter, while raising awareness of Autism and funding for Pathfinders. Check out the upcoming events calendar in this issue and on our website www.pathfindersforautism.org for up to the minute information.
Pathfinders for Autism Professional Training Series On January 25, 2008, Robert Burns, Director of the Division of Rehabilitative Services (DORS), stepped to a microphone before a crowded auditorium at the Workforce and Technology Center in Baltimore to welcome the audience to DORS’ Autism Training Series and to thank Pathfinders for Autism, as well as the Maryland Rehabilitation Association for their co-sponsorship. In his comments, Mr. Burns recognized Pathfinders for having the foresight in 2006 to approach DORS and warn of the coming “tidal wave” of clients with Autism Spectrum Disorders (ASD) – students who will soon be leaving the public schools in need of vocational services – and to propose a comprehensive autism training program for DORS staff.
with advocates and parents from across Maryland and nearby states, turned out to hear nationally recognized trainer and author Sherry Moyer present “Vocational Implications for Individuals with ASD.” Mr. Burns acknowledged that DORS is already seeing the “tidal wave” with a 70% increase in clients with autism from 287 clients in 2005 to 489 clients in 2007. The huge turnout validated the need for training for professionals throughout Maryland to better serve their clients with ASD. The four-part training series, designed specifically for transition and vocational professionals, is sponsored by Pathfinders for Autism. The remaining three sessions will take place over the next six months. Watch the Pathfinders for Autism Calendar of Events at www.pathfindersforautism.org for details on these and other upcoming trainings!
Eighteen months and many planning sessions later, over 210 employment and education professionals, along
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Parents Share Tips for Summer Fun! Paige Pape
Five years ago, the Pathfinders for Autism Resource Center officially opened. The founding board members believed Maryland needed a place for families to call to learn about autism and a user-friendly list of resources. They were right. To date, the Pathfinders for Autism Resource Center has responded personally to over 1800 inquiries. Our on-line, searchable database now offers more than 800 service/product providers and continues to grow. With summer coming and knowing that fellow parents are often our best source of resources, we posed this question:
(18 year-old son) Many years ago I was advised to introduce my son to residential camp. The idea was to get him used to being away from us and gain more independent skills. It took a few years before I was brave enough to try. My boy went to a residential camp for a weekend. It was neither a good nor bad experience; however, he never wanted to return to that camp.
“What are your best tips for creating a happy and successful summer for your family?”
Will Gehne (7 year-old son,
Meanwhile we found a day camp. My son needs to stay busy and day camp provided an outlet for his time and energy. It wasn’t perfect, but it has improved over time. Each year we would visit the local camp fair and I would try to coax him into trying residential “sleep away” camp. Eventually we tried another camp for a weekend. He enjoyed the camp and asked to return the next summer for two weeks. Summer of 2008 will mark our 4th summer. Those twelve nights give our family a chance to do summer activities we would not normally be able to do with our son in tow. The much needed respite allows us to recharge for the busy days our son normally demands. It may not work for all families but I am grateful for the suggestion long ago to try residential camps. My son is 18-years-old and I hope to continue using residential camps in the summer and now for fall respite weekends. It has proved to be successful for our family (thus far).
5 year-old daughter) Do your best to put school year concerns behind you. Many of us have annual IEP reviews late in the school year (one of ours usually falls during the first week of June!). Take steps now to prepare for that meeting. Schedule independent evaluations, start pulling together progress data that proves your points, etc. Nothing allows you to focus on summer fun better than knowing the best possible arrangements are in place for success next school year. Nothing distracts from your summer like follow-up meetings to deal with the unresolved issues in an IEP.
Eva Williams (8 year-old son)
I communicate with teachers and other service providers (OT, speech) to find out what works for them during the school day. I have asked them to duplicate copies of PECS, schedules, and social stories so that I can use them at home. My son needs routines and schedules. He does not like it when we go to more places than I said we would. We know that meltdowns happen when we have been out and about for 3 - 4 hours, so we plan short trips and bring his favorite snacks and books. Also, we have taken our summer vacation at Disney each year. He looks forward to it and they are very accommodating to people with special needs.
Take the stress away from summer vacation by preparing for the next school year. Provide a predictable and fun routine that incorporates helpful elements of the school program. This will make your summer smoother and promote learning and skill retention. Finally, try something new. This might be the perfect time to try an inclusive camp, particularly if it taps into your child’s special interests. Or a sleepover camp. Or music lessons. The list is endless.
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The Value of a Good Assessment By Kathy Niager, Ph.D.
on a screening tool, may cheat you and your child out of the complete picture of strengths and weaknesses specific to their individual learning style and personality.
A professor once said to me, as I struggled with the life decisions occurring during graduate school, “Fear is equal to the amount of unknown.” Reduce the unknown and reduce the fear! However, the fear of something being wrong with your child is the greatest fear of all. The reality of sitting across from a professional who is about to set your fate regarding what is “wrong” with your child is a brutal reality and one that many people avoid.
A diagnosis is a label and only a label -- a word that has been used to describe a group of characteristics which tend to fall in line together. One child with autism is no more like another child with autism than typically developing children are alike. Therefore, though similar children at the same skill level can benefit from learning similar things, children with specific deficits that are not addressed will continue to fall further and further behind.
However, the value of a good assessment is multifold:
• You can’t wrap your head around
what is and isn’t “wrong” until you have words to describe what you are seeing and feeling regarding your child. Your child can’t get good treatment until you know what exactly needs to be treated. You don’t know if the treatment is helping until you know specifically what you are working on and what it will look like when it is better. You can’t set foot on the road to managing your fear until you pick a direction and gain control of your life by moving in that direction.
On the other hand, running every test in the book is not necessary for a good assessment either. Based on the history and suspected diagnosis, a thorough assessment should:
• •
• • • •
seek to confirm behaviors characterized by that diagnosis rule out other possible explanations identify specific strengths that can be used to compensate for deficits give a solid and thorough starting point for specific goals related to specific deficits.
•
Knowledge is power. With the knowledge of what your child can do, you will have the power to reinforce those strengths and never miss an opportunity for both you and your child to find joy in their accomplishments. With knowledge of what they cannot yet do, you can make an informed decision about the next steps that you need to take. That is invaluable knowledge that comes from a thorough assessment.
A good assessment gives you a starting point, a direction, and a map to follow. It is one that addresses specific strengths and weaknesses. Many initial assessments use only screening instruments. These are great for determining if there is enough concern to warrant a complete and thorough evaluation which can be time consuming and expensive. But a diagnosis, solely based
(Dr. Niager is the Clinical Director of Trellis Services, Inc. serving families and children with Autism and related Communication Disorders. www.trellisservices.com)
Pathfinders for Autism Resource Center
FY 2008 Year-to-Date Statistics ( October 1, 2007-January 31, 2008) Our Resource Center averages:
9,958
Website Visitor Sessions Per Month
319
Website Visitor Sessions Per Day
4
37
Personal Contacts (telephone or e-mail) Per Month
Announcements & Updates Pathfinders for Autism Promotes Awareness & Understanding National Aquarium in Baltimore & Pathfinders Team Up for Family Fun
Pathfinders for Autism sponsored three Family Fun nights at the National Aquarium in Baltimore this past winter. The events were made possible through the generosity of The National Aquarium in Baltimore and a private donor. Nearly 300 friends of Pathfinders turned out for the events. Guests were treated to a dolphin show and allowed several hours to roam the facility during low attendance times. We received a lot of wonderful feedback from the families who attended. Pathfinders is working to schedule other free and low-cost family events, including more visits to the Aquarium next fall, as well as to Port Discovery and a sailing trip with Chesapeake Region Accessible Boating. Be sure to check our website calendar of events for these and other Family-friendly events! www.pathfindersforautism.org
Eating Out Just Got a Little Easier
Looking for a restaurant that can accommodate your family’s needs? A place where you can get great food, that offers gluten and casein free choices, that will embrace your family’s uniqueness and servers who understand if your child simply must eat the PB&J sandwich that mom made – NO exceptions? If so, the Rockfish in Annapolis just may be the place for you. The restaurant has dedicated every third Tuesday of the month as Autism Night in the hopes that families will feel more comfortable and enjoy dining with other families in a place that understands their situation. Pathfinders for Autism is providing training for the restaurant staff to promote awareness and understanding. And, the Rockfish is generously donating a portion of each night’s proceeds to Pathfinders. Families interested in attending are encouraged to call ahead at 410-267-1800 and mention Pathfinders. More information can be found at
[email protected].
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National Autism Organization Appoints Local Autism Advocate as Senior Policy Advisor
Congratulations to Stuart Speilman who joined Autism Speaks in January as Senior Policy Advisory and Counsel. Speilman, a founding member of Pathfinders for Autism and current member of the Board, will provide the national organization with insight and legal advice on issues related to recommended policies. A primary responsibility for Speilman is to advise Autism Speaks in matters related to their Multi-State Insurance Legislation Campaign, which seeks to pass mandatory insurance coverage provisions for autism services, aimed primarily at Applied Behavior Analysis (ABA) and other structured behavioral therapies. Speilman, an attorney who spent the past 20 years in the Office of Chief Counsel for the Internal Revenue Service, is responsible for landmark autism legislation, both in Maryland and at the national level. As a volunteer, Speilman worked with other parent advocates to create Maryland’s Autism Waiver – a Medicaid waiver administered through MSDE that covers ABA and other therapies for children with ASD. In 2004, Speilman assisted Pathfinders in drafting first-in-the-nation legislation authorizing a three-year pilot program to train Maryland pediatricians in the early detection of autism. In addition, Speilman drafted the initial version of the Combating Autism Act, which was introduced to Congress in 2005, signed into law in 2006, and received funding in 2008 – an expected $162 million fiscal appropriation for FY2008. When asked what lessons he has learned over the past 13 years spent as an advocate for his son and other children with autism, Speilman said, “As parents, it is up to us to do what is best for our children. Don’t assume there is someone sitting at a desk in some agency with the answers or with creative ideas on how to help your child. The person with the answers is you.”
Pathfinders’ Volunteers Pathfinders’ many volunteers continue to help us to support families in their daily challenges as well as provide information and training to professionals who serve individuals with autism. Volunteers T.J. Zeller and Richard Chaney continually go the extra mile to support the organization, often bringing their colleagues and family along.
T.J. Zeller, President of the Towson Jaycees, has been a fantastic supporter of Pathfinders’ events. T.J. and fellow members of the Towson Chapter Jaycees have served as ushers, sales persons, cleaning crews, information distributors and recruiters for many of our events. T.J. is always looking for new ways that he, and the Jaycees, can support the organization, most recently offering to donate proceeds from the chapter’s annual Shrimp Feast (see Events pg. 7). We greatly appreciate his enthusiasm.
Little did we know when Karran Chaney joined the Pathfinders team as Executive Assistant in 2005 that we would be fortunate enough to get a package deal! Karran’s husband Richard Chaney, who works for the State of Maryland by day, has supported nearly every event the organization has hosted during the past 2 ½ years. He has hauled boxes and set up banners for our annual golf tournaments; sold raffle tickets by the hundreds; set up auction displays and information tables; and constantly promotes our activities. And, Richard’s efforts don’t stop there; he has hauled air conditioners into our offices and measured for phone and extension cords so that the Resource Center can work efficiently (and comfortably). Richard is always offering creative suggestions and ideas to help Pathfinders better serve our families.
▲
Karran and Richard Chaney at the Pathfinders for Autism 2007 Golf Tournament. ▲
T.J. Zeller, President of the Towson Jaycees
If you are interested in volunteering with Pathfinders, please contact Rebecca Rienzi at 410-769-8221 or e-mail
[email protected].
Brookes Autism Library Giveaway!
April is National Autism Awareness Month. Celebrate with Brookes Publishing—Enter the Brookes Autism Library Giveaway. Drawings will be held each Wednesday in April to win a collection of books from Brookes worth $500! Sign up begins March 1. For details, visit www.brookespublishing.com/autism
Brian Dives Into Fun continued have to offer; it is also a vacation for the caregivers, as taking care of someone with disabilities can be very overwhelming. In addition to Fairlee’s residential camp sessions throughout the summer, the camp also offers a separate respite program from October to May on select weekends for youth and adults. Campers enjoy seasonal activities like pumpkin picking and holiday parties. At noon, Brian and Dominic return from their canoe trip, hungry and wet. Their canoe had tipped, spilling the boys, safe in their life vests, into the shallow water. “I’m covered in mud!” Brian shouts from the boat. “But it was still fun!” His dad was right – Brian sure is a water rat. We at Pathfinders are intent on finding paths for our children. We are also intent on highlighting any happiness we find along the way. With your help, we would like to showcase the happy days. Send in your “slice-of-life” stories that shows us your “happy.” We’ll cheer your “hurray” moments!
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Mark Your Calendar! april events...
3rd Annual Baltimore Comedy Fest for Autism Awareness April 4 & 5, 2008 Mobtown Theatre Hampden, MD www.baltimorecomedyfest.com 100% of proceeds to benefit Pathfinders
Webinar: He Reads but Doesn’t Understand: Supporting the Reading Comprehension of Students with Autism Thursday, April 10, 2008 2:00pm EST Paula Kluth, Ph.D., and Kelly Chandler-Olcott, Ed.D. www.brookespublishing.com/autism to register.
Towson Jaycees Shrimp Feast April 12, 2008 American Legion Post 22 125 York Road Towson, MD 21204 A portion of the proceeds to benefit Pathfinders
Band Together for Autism April 12, 2008 VFW Post 8185 Port Deposit, MD Proceeds to benefit Pathfinders Tickets $25.00 Contact: Kathy Clemens: 443-553-4524 or Scott Church: 443-451-5225 www.routeoneband.com
B.J. Surhoff and Delegate James King, owner of the Rockfish
Autism Night at the Rockfish April 15, 2008* (Every Third Tuesday of Each Month) 400 Sixth Street Annapolis, MD 21403 410-267-1800
[email protected]
Save the Date...
2008 Pathfinders for Autism Golf Tournament & Awards Dinner Monday, May 5, 2008 Hillendale Country Club Registration/Lunch: 11am Dinner/Auction: 5:30pm
Port Discovery Days Sunday, May 11 and Sunday, June 22 FREE, registration required Registration opens May 1, limited
Sailing with CRAB (Chesapeake Region Accessible Boating) June 14, 2008 rain Date June 15 Sandy Point Park Annapolis, MD Free, registration required Registration opens May 15, limited
Pathfinders for Autism Fashion Show Saturday, October 25, 2008 Geppi Entertainment Museum Tickets $150.00
Ca m p s
Information on these events and more can be found at www.pathfindersforautism.org/calendar.
Camp Green Top The League for People with Disabilities Frederick County 410-323-0500 www.campgreentop.org
Camp Calvert Calvert County 410-535-1600 Ext. 2675
[email protected]
Kamp A-Kom-Plish Melwood Charles County 301-870-3226 www.kampakomplish.org
OT Ventures’ Sensorimotor Summer Camp Howard County 443-812-6396 www.ot-ventures.com
Additional camps can be found by visiting the Pathfinders Resource Center online at www.pathfindersforautim.org or by calling 866-806-8400.
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National Speech/Language Therapy Center Summer Camp (Jump Start Camps) Montgomery County 301-493-0023 www.nationalspeech.com
Nonprofit Organization Permit #549 U.S. Postage
Paid
Cockeysville, MD
P.O. Box 10501 Baltimore, MD 21285 Address Services Requested
Your Donation Makes a Difference!
Please consider a contribution to Pathfinders for Autism – a great gift idea to honor a loved one or colleague. See the enclosed envelope for details. Thank you!
Board Members Alisa Rock President B.J. Surhoff Vice President Bruce L. Schindler Treasurer Rebecca Faye Smith Galli Secretary Polly Winde Surhoff Linda Carter-Ferrier H. Bradley Donovan Michael R. Ford Stephen A. Geppi John W. Kamauff Brian R. Mund Rick Opfer Stuart Spielman Honorary Board Member Michael Phelps
Pathfinders Wins Mt. Washington Tavern Charity Challenge!
Many thanks to all who participated in the Mt. Washington Tavern event held in September! We won the $10,000 prize for highest restaurant and bar sales! Special thanks to our Celebrity Guest Bartenders: B.J. & Polly Surhoff Mike Bordick Steve Geppi Marianne Banister Mary Beth Marsden Stash of 98 Rock Greg Hall of the Early Monday Morning Show Thanks for your support!
Pathfinders For Autism Resource Center HELP LINE: (410) 769-9500 Toll-free (866) 806-8400 www.pathfindersforautism.org
“Our mission is to find a path for our children.”
