Fitness First and Project TEAM to Continue Under Auspices of HCAS
Transcription
Fitness First and Project TEAM to Continue Under Auspices of HCAS
Perspectives Winter 2009 / Volume 16, No. 1 Fitness First and Project TEAM to Continue Under Auspices of HCAS By Beth Benevides Hill Two successful pilot programs, Fitness First and Project T.E.A.M. (Together Everyone Achieves More) have been renewed by the Howard County Autism Society for 2009. Previously funded by grants from the Ravens Foundation and the Horizon Foundation respectively, these programs now will be fully funded by HCAS. In announcing open enrollment for Fitness First, HCAS Executive Director Kim Manning expressed her excitement that this program and Project T.E.A.M. were renewed by the HCAS Board of Directors. “I am delighted that we are able to sustain these much-enjoyed and truly beneficial programs for our families,” said Manning. “Pilots are meant to create new opportunities and „test the waters.‟ We did that in 2008 and were overwhelmed by the positive feedback from participants. Our Board was very receptive to that.” Fitness First Fitness First brings together individuals with autism and their families once a month to enjoy various exercise activities at the Columbia Gym in River Hill. HCAS will pay the rental fee for the gym and provide healthy snacks at the end of each session. Jimmy Peters enthusiastically agreed to continue coaching this program. Peters is a county resident who coaches basketball and baseball for area leagues and is an umpire for semiprofessional baseball. Each month, he plans activities and leads participants in running exercises, basketball drills, rollerboard races, stretching, and much more. After 45 minutes of gym activities, he leads families to the much anticipated „swimming session.‟ In addition to Peters, several other friendly volunteers—mostly high school and college students—assist participants with exercise activities and basic socialization skills. Lynn Frost, an adaptive PE teacher with the county school system, also lends her expertise to the program. New to Fitness First is a minidance session. Rohini Bhatia, a senior at Centennial High School and a member of the Best Buddies program, will offer a new music and movement opportunity at Fitness First. Bhatia and four other peer mentors from Best Buddies will direct families in stretching, free movement exercises, and a choreographed 60-second dance. Fitness First takes place the third Saturday of every month, from 7:009:00pm. HCAS members interested in participating can download the application at www.howardautism.org or contact the office for information. Project T.E.A.M. Project T.E.A.M. was piloted last year at three county high schools— Centennial, Howard, and Oakland Mills. The purpose of T.E.A.M. is to help students with developmental disabilities become engaged in extracurricular and afterschool activities. It pairs students with disabilities with student mentors and provides resources so that together these teens can participate in activities, such as school plays, sporting events, homecoming, after school clubs, and fundraisers. In addition to extracurricular activities, Project T.E.A.M. hosts workshops about such topics as selfdetermination, setting attainable goals, using person-first language, employment opportunities, and social skills. “As these young people become engaged in the greater community of their school campus, they feel a broader sense of acceptance,” said Manning. “Being a part of things naturally leads to a more positive attitude about the school experience.” In 2009, Project T.E.A.M. will be coordinated solely at Howard High. Howard County Autism Society 10280 Old Columbia Rd, Suite 215 Columbia, MD 21046 410.290.3466 www.howard-autism.org 2009 Board of Directors President Beth Benevides Hill Vice-President Cynthia Schwanz Treasurer Patrick Boxall Secretary Lori Krausz Immediate Past President Stephanie Maric Members at Large Pamela Beck Deborah Clutts Ruth Huffman Elaine McAuliffe Roger Miles Marianne Ross Louann Maimone Spring Dena Taylor Madhu Thibaudeau Cheri Truett Asperger’s Liaison Elaine McAuliffe ................. Annual Gala Tickets Go On Sale Tickets to the much-awaited, highlyanticipated, most-enjoyable night of the HCAS-year are now on sale! The Fourth Annual Pieces of the Puzzle Gala will be held Saturday, April 25th. This evening of dinner, dancing, silent and live auctions, fun, friendship, and celebration begins at 7:00pm and ends at midnight. The annual Pieces of the Puzzle Gala is the largest fundraiser of the year for the Howard County Autism Society. Funds generated at this event directly support the daily operations of the Resource Center and contribute to the services and programs offered to HCAS membership. The gala will return to the beautiful Ten Oaks Ballroom after much applause from last year‟s guests about the venue, food stations, and festive atmosphere. Ticket prices remain the same as last year, at $100 per person. To purchase tickets: Online~ www.howard-autism.org Phone~ 410-290-3466 Mail~ HCAS, Attn: Gala 10280 Old Columbia Road, Suite 215 Columbia, MD 21046 Executive Director Kim Manning Director of Development Ginny Bickell Administrative Assistant Ayana Carr Rodgers Bookkeeper Dana Riley ................ Perspectives: The Newsletter of the Howard County Autism Society is published quarterly. Articles represent the views of the authors and not necessarily those of the Howard County Autism Society. The publication of advertisements does not indicate any endorsement by HCAS. No article may be reproduced without written permission from HCAS, which copyrights this publication. 2 Gala Sponsors and Auction Donors Needed HCAS is actively seeking sponsors and auction donations for the Fourth Annual Pieces of the Puzzle Gala. Many sponsorship opportunities exist, from donor ($500) to title sponsor ($15,000). Please contact Ginny Bickell, Director of Development, at gbickellHCAS@yahoo.com or 410-290-3466 for more information. To donate items to the silent or live auction, please contact Lori Krausz at 410-995-4981 or auction@howard-autism.org. PERSPECTIVES Winter 2009 News from Executive Director Kim Manning Happy New Year! There is something about buying a new desk calendar that re-energizes me! I‟m a big coffee drinker (and spiller), so by December I have stains all over my desk calendar and the thought of smooth, bright white pages is really exciting. I also make a kind of „mental switch‟ in January that makes me very hopeful about the year ahead. There‟s nothing like a new year filled with new possibilities and opportunities. We certainly have some challenges we are all facing in 2009, but at the same time we, at the Howard County Autism Society, are excited about the opportunities in front of us to make a difference in advocacy, education, support, and services within our community. We are truly going to be stepping up our advocacy efforts on behalf of our individuals with autism. I am now serving on a state-wide Educational Advocacy Committee chaired by the Maryland Disability Law Center. My presence at the meetings of this committee ensures that our voice is heard by the Maryland State Department of Education on issues related to special education and autism. We are also becoming more actively involved in the “End the Wait Now!” Campaign. Look for updates on the campaign via our newsletter and the yahoo group. With so many of our local families on the DDA Waiting List for Community Services (which currently stands at 18,750 applicants), I encourage all members to support this campaign. You can make a difference with legislators! Please visit www.endthewaitnow.com for the latest information. As well, we will be representing your concerns and needs related to the autism insurance legislation being introduced in the upcoming legislative session. Furthering our local advocacy efforts, we will continue to be active in developing partnerships with organizations and businesses that serve our families, cultivating opportunities for trainings on autism, and exploring lifespan issues with local agencies. We are pleased to continue our collaboration with Julie Foley and Kim McKay of Parents for Parents in seeking continuation funding for the Family Advocacy and Parent Education (FAPE) grant. Visit the Parents for Parents website at www.parentsforparents.org to stay up to date on parent training and resources that they offer. As we begin this new year, please stay in contact with us and let us know how we can serve your needs. We strive to be responsive to the issues that are important to you and your family. It goes without saying that even in these tough economic times, autism is not experiencing a “recession.” So our work continues as does our unwavering commitment to be your voice in Howard County. ~Kim Manning Winter 2009 PERSPECTIVES HCAS Gratefully Acknowledges Our 2009 Annual Campaign Donors Cassandra & Dane Bates Benedict & Slack CPA’s Sue Bentivenga Jim & Kathleen Bovard Amanda Cheong John & Debbie Clutts Kristen Detwiler Martha DiIenno Allison Fedarko Frank Feng Andy & Christi Hanks David & Mary Hepple Bill & Beth Hill William & Ruth Hill Lisa Hussman Debang Lao Matthew & Marita Lesho Joe & Maryjean Mazzafro John M. McGough Jennifer Meade Bill Moss Bernadette Olean Elaine Persons Jane Plapinger Burton & Arlene Robins Paul & Norma Sesto Sara Sommerville Gary & Judy Terle Pat Timm Steve & Pam Wagner Trenarda Winston It’s never too late to contribute to the Howard County Autism Society! See membership/donation form on page 15 or www.howard-autism.org 3 Planning for the Future: Basics of a Special Needs Trust By Alisa Kobrinetz Chernack, Esquire __________________________________________________________________ As I sit at my computer the day before this article is due, an example of procrastination at its finest, I am making a mental list of all the menial tasks that I need to accomplish for my family by the end of the week. However, the list seems to pale in comparison to the myriad of issues that need to be addressed for our son, age five, who has autism. The job of planning for our son‟s future, including our estate planning, is just one more important item to add to the list. It surely does not seem as critical as deciding which speech therapist our son should see or what goals need to be added to his IEP. In evaluating with my husband of what OUR goals are for our son, we need to evaluate whether our son would need the protection of a trust to manage assets that we will leave him upon our death or that he may inherit from our parents. This would include life insurance proceeds or any other asset available to secure his future. It is very difficult to envision what my son‟s future will look like 15 years from now. I have no idea if he will be able to go to college, hold a job, or need public benefits. For example, I will need to determine if he would be eligible for Supplemental Security Income (SSI) benefits—federal benefits for individuals who qualify as aged, blind, or disabled—once I can no longer cover him on our health insurance. Since SSI eligibility provides a monthly stipend, in addition to health insurance, I will need to make sure that he only has countable assets that are within the 4 resource limit, currently $2,000. (There are other resources that a recipient may own, such as a home, which is excluded from this figure.) In addition, he may need other government-funded supports, such as residential, vocational and supported employment, which require that he have assets below a certain amount. The goal in planning for a child who qualifies as being disabled is to keep him from losing government-funded benefits if he receives an inheritance and/or a malpractice settlement. My goal here is to provide a basic understanding of a special needs trust and a Maryland Discretionary Trust, and to facilitate discussion within your family about the steps that may need to be taken to plan for your child‟s future. WHAT IS A TRUST? A trust is a legal instrument that allows a grantor, such as a parent or grandparent, who owns an asset to convey the asset to a trust for the benefit of another individual, known as a beneficiary. In certain circumstances, such as a malpractice settlement, the funds to be transferred to a trust belong to a beneficiary who is already receiving public benefits. The trust document is required to be in writing, to be signed by the grantor, and to be accepted by the named trustee. The grantor names a trustee, and commonly a successor trustee, to carry out the PERSPECTIVES grantor‟s wishes as to how the assets will be used for the benefit of the beneficiary, your child. The selection of a trustee is crucial and sometimes a very difficult decision to make. Some consider using a bank as a trustee for various reasons. However, many banks will not accept the duty if the value of the trust is minimal. It is important to discuss the selection of trustee with the person(s) you wish to name to ensure that they are willing to take on the job. It is not an easy job and they need to know what it entails and the resources available to them should they have any questions. Rules regarding distribution The trust terms will define how the trust funds may be used and for whose benefit. The trust also sets forth what happens to the funds once the beneficiary dies. Parents need to outline where they want the funds to go if their child dies without using up the trust. In creating a special needs trust or discretionary trust, it is crucial to make sure that the beneficiary lacks access to the funds that would render him or her ineligible for public benefits. The primary goal of the trust is to pay for incidentals that would not otherwise be available to the beneficiary when he or she is a recipient of government benefits. For example, you might like your child to go on vacation or receive computer training that costs more than the $2,000 resource limit, but there is no other resource to pay for (continued on next page) Winter 2009 Planning for the Future (continued from previous page) The trust would provide for the trustee to make such payment from the trust funds directly to the provider, without jeopardizing your child‟s entitlement to public benefits. Funding of the Trust Careful consideration should be made as to what assets will be placed into the trust. For example, a grandparent wants to leave a grandchild a house but does not leave the grandchild any other assets to maintain the house. This poses a practical problem of how the beneficiary can afford to maintain the house without liquid assets. Another manner to fund a trust is by way of life insurance. In this instance, the life insurance contract would name the “Trust of (the child‟s name)” as the beneficiary and not the child. Once again, the correct beneficiary designation is crucial to avoiding a loss in public benefits. The Parent University Opens Did someone ever give you advice or guide you to just the right resource that made all the difference in your family‟s life? Did a friend, neighbor, or family member help you along the way? Do you wish you could „pay it forward‟ or give back to other parents? If so, then Parent University is for you! Parents for Parents, a cross-disability parent support organization, is building a parent-to-parent network of individuals willing to work with other families. Called “support parents,” these individuals will provide families with information, connect families to resources, and attend IEP meetings. You don‟t have to know everything already—Parents for Parents provides the training at the Parent University. You just need a desire to help other families! Co-founders Julie Foley and Kim McKay will match you with families that can use your experience and expertise. Are you an elementary school family who just finished the RECC program and could help another RECC family? Are you now in middle school?—perhaps you could help a family thru the often daunting and scary transition from elementary school to middle school? Are you a veteran family that has high school experience to share? Families of all ages and disabilities, and all areas of the county, are needed. It is a unique opportunity to become involved and active, on your time and your schedule. Parent University trainings will begin in March. They are funded by the Family Advocacy and Parent Education (FAPE) Program Grant awarded to the Howard County Autism Society by the Howard County Department of Citizen Services. To learn more about the trainings or the parent-to-parent network, contact Julie Foley at julie@parentsforparents.org, Kim McKay at kim@parentsforparents.org, or call 410-465-1193. Alisa Kobrinetz Chernack, Esquire, practices law in Ellicott City. She can be reached at alisachernack@verizon.net and 410-750-6112. Maryland Biomedical Group Meets Monthly in Columbia The Maryland Biomedical Group meets the first Thursday of every month at 7:00pm at the Faulkner Ridge Center in Columbia. On February 5, 2009, guest speaker Debbie McCabe will speak about IV Chelation. This parent group offers support and information to families in the state of Maryland using biomedical and alternative healing therapies for autism and related disorders. For more information please contact Jennifer Palmer at jenn_palmer@comcast.net or Remy Nirschl at mrnirschl@gmail.com. The group maintains a listserv on yahoogroups.com called “Maryland_biomedical.” Winter 2009 PERSPECTIVES 5 Project Lifesaver Enrollment Opportunities Stephanie Maric, J.D. 301-379-9493 Long & Foster – Columbia 10805 Hickory Ridge Road Direct: 301-379-9493 Office: 410-715-2721 The Howard County Autism Society and the county police department jointly sponsor Project Lifesaver, a tracking program that uses radio technology to locate vulnerable children and adults who wander. Enrollment in Project Lifesaver is currently free to individuals with autism. Several locator wristbands are still available. If you would like more information or an application, please contact HCAS at 410-290-3466 or email info@howard-autism.org. More information on Project Lifesaver can be found at www.projectlifesaver.org. email: stephanie.maric@longandfoster.com DONATION COMMITMENT: I will donate $250 to the Howard County Autism Society for every member referral that results in a sale! (I’ll up that to $500 if I sell your home and help you buy a new home) Bowling League Proud Parent and HCAS Board Member JOIN THE FUN ON SUNDAYS! Mt. Airy Lanes welcomes individuals with special needs and their families to its Sunday bowling league. Bowl 12 weeks in the spring and/or fall. $3/week includes shoe rental. For more information, contact LISA BOXALL at lboxall@comcast.net. 6 PERSPECTIVES Winter 2009 The Maryland Developmental Disabilities Administration — Q&A with Catriona Johnson — By Kim Manning __________________________________________________________________ Former Howard County Autism Society President and Board Member, Catriona Johnson, is Assistant Director for State and Federal Relations at the Maryland Developmental Disabilities Administration (DDA). In an effort to help HCAS members understand more about DDA, we interviewed Ms. Johnson with the following questions. What is the Developmental Disabilities Administration? DDA is an administration within the Maryland Department of Health and Mental Hygiene (DHMH) that funds and administers services for individuals with developmental disabilities. Examples of developmental disabilities include cerebral palsy, intellectual disabilities, autism, and other life-long disabilities that present before the age of 21 and require that an individual has a range of services and supports. Who does DDA serve? DDA serves two groups of people with developmental disabilities. The first group is individuals who meet the full “DD eligibility,” meaning that their disability meets the level of care to receive services in an institution. This group is eligible for the full range of DDA services. The second group is referred to as “Supports Only-eligible,” meaning that their level of disability is not enough to meet the institutional level of care. This group is eligible for a limited set of services. Full descriptions of the two eligibility categories are available on DDA‟s website (www.ddamaryland.org). It is important to remember that DDA‟s services are not an entitlement like special education services under the Individuals with Disabilities Education Act (IDEA). Individuals must apply and go through an eligibility process. Winter 2009 When and how can people apply for DDA services? People can apply for services from DDA at any time; however, we recommend that individuals apply by age 14. This ensures that DDA is aware of them in order to project how many youth with developmental disabilities will need services as they transition out of the public school system. Applications are on the website, www.ddamaryland.org/CMRO. Residents in Howard County without access to the internet can phone the DDA Central Regional Office at 410-902-4500 for an application. What services does DDA offer to individuals with autism and other developmental disabilities? There are a range of services available. Most people will be aware of Rolling Access Funding or low intensity Family and Individual Support Services. Rolling Access is funding capped at $3000 per year provided to an individual or family for services like respite care, assistive technology, equipment, or therapies. These funds are available through certain DDA-contracted providers and are generally available on a firstcome, first-served basis. A list of DDA Rolling Access providers is available on the DDA website (www.ddamaryland.org). There is no need to go through the full eligibility process to access Rolling Access funding; an individual will just have to show the Rolling Access provider some documentation (such as an IEP, a psychological assessment, or a letter from a physician) stating that the individual has a developmental PERSPECTIVES disability. Even though the amount is capped at $3000 per year, most people receive far less—usually a couple of hundred dollars—because the number of individuals requesting Rolling Access is greater than the funding that is available. People should also know that DDA provides new funds to Rolling Access providers at the beginning of each fiscal year, which runs from July 1 to June 30 of each year, so less funding tends to be available later in the year. The other service that individuals with autism may need is Behavioral Support Services. In the Central Region, where Howard County is located, DDA contracts with Humanim (www.humanim.org), a Columbia-based organization, to provide Behavioral Support Services. If someone has a developmental disability and has challenging behaviors, Humanim can assist a family to take data on the behaviors, will develop a behavior plan, and train them on how to implement the plan. Individuals can call Humanim directly (410-381-7171) if they are in need of such services. Finally, individuals can receive longer term and higher intensity services through DDA. These services include Resource Coordination, a variety of Day Services (Supported Employment, Community Learning Services, Employment Discovery and Customization, Traditional Day Habilitation, and Medical Day Care), Family and Individual Support Services, Residential Services (in group homes or Alternative Living Units/ALUs), Community Supported Living Arrangements (in which services come to the individual‟s or family‟s home), transportation, etc. These are longterm support services designed to support an individual to be included in his or her community and live a quality life. (continued on next page) 7 Maryland DDA: Q&A with Catriona Johnson (continued from previous page) Does DDA administer the Autism Waiver? No, the Autism Medicaid Waiver is administered by the Maryland State Department of Education (MSDE) and covers children with autism ages 1 through 21. DDA has two others—the Community Pathways waiver and the New Directions waiver. These are primary funding sources for DDA to provide services because they allow DDA to collect a federal match on the State funds spent on services for individuals on those waivers. DDA serves more individuals with autism than are served on the Autism Waiver. Unlike the Autism Waiver, DDA‟s waivers cover both children and adults. What is the difference between the Community Pathways and New Directions waivers? The Community Pathways waiver currently serves about 11,000 individuals with developmental disabilities. It is “provider managed,” meaning that once an individual chooses a DDAlicensed provider, DDA pays that provider directly and they are responsible for hiring staff, setting payment rates, delivering the services, ensuring quality in the services they provide, etc. The New Directions waiver serves just over 100 individuals with developmental disabilities. The New Directions waiver is a “participant directed” or “self-directed” waiver, meaning that the individual and their Circle of Support develops a service plan and budget, which is then approved by DDA. Once the plan and budget are approved, the individual (with support as needed) can hire his or her own staff, determine payment rates, contract with service providers or vendors. The DDA funds are given to a fiscal intermediary known as a Fiscal Management Service, which pays the person‟s employees and vendors. 8 Are there people with autism using the New Directions waiver? Absolutely. Both children and adults with autism are served under the New Directions waiver. In fact, the percentage of those with autism in New Directions is higher than the percentage of people with autism in DDA services, which tells me there is a big interest in self-direction. New Directions allows its participants to find providers beyond those licensed by DDA; that offers greater choice to people who are looking for highly individualized services. Does DDA have a long waiting list for services? Unfortunately, DDA does have a waiting list for services, something we are currently reviewing and updating. Right now when someone is determined eligible for services, they are placed in a priority category based on their level of need for each of the services requested. These priority categories—Crisis Resolution, Crisis Prevention, Current Request, and Future Need— determine who is served when funding becomes available. What about Transitioning Youth? Transitioning Youth—youth with developmental disabilities leaving the school system at the end of the school year in which they turn 21— comprise a special priority category. If funding is allocated for Transitioning Youth by the General Assembly, youth leaving school may receive Supported Employment or other Day Services. This ensures that they do not regress once leaving the education system. DDA is currently developing an “Employment First” policy, meaning that employment will be the first and preferred option considered for transitioning youth and adults receiving DDA Day Services. Data show that employment is the strongest variable to adults reporting a high quality of life. PERSPECTIVES What is the strategic plan DDA is currently developing? Last year a new Executive Director was hired, Michael Chapman. Not only does he have great vision, values, and experience, but he is leading DDA through the strategic planning process. I think the result will not only be more person-directed services, but policies and procedures aligned with and supportive of that goal. DDA also has some new staff, such as Central Regional Office Director, Cynthia Kauffman, who brings both experience and a fresh perspective to DDA. The key to the strategic planning process however has been the public input. DDA held seven public forums throughout the State and received hundreds of comments through a webbased survey. There is overwhelming support for changes that will improve services and outcomes for people. So where does the autism community fit in? Now is an opportune time for the autism community to engage alongside the broader developmental disabilities community regarding services at the State and Federal levels. DDA has always been non-categorical in its approach, meaning that services are based on individual needs not on any specific disability label. As well, the autism community can learn a lot from other organizations serving people with developmental disabilities, particularly around self-advocacy and selfdetermination. That said, DDA is looking at ways to increase its own expertise about autism and build community capacity to address the needs of this growing population. The autism community needs to engage in issues of community inclusion, employment, quality, and a host of other topics. I would encourage autism organizations to have an open dialogue with DDA about what the needs of individuals with Autism Spectrum Disorders are, about best practices, and about ways that we can work together to design and deliver services that not only address the needs of people, but give them more control over their lives. Winter 2009 Splish-Splashin’ Away . . . On a January Day! HCAS Families Turn Out for Winter Pool Party A pool party in January? . . . Yes, that’s right! Nearly 100 children, teens, and adults braved the cold on January 11 for the second annual winter pool party at the Lifetime Fitness gym in Columbia. The free event is hosted twice a year for membership. It is a wonderful opportunities for families to socialize and meet others affected by autism. The summer pool party will take place in August. Winter 2009 PERSPECTIVES 9 SOCIAL SKILLS GROUPS – ASD, ADHD, LD Lighthouse Family Counseling Center 60 Mellor Ave, Catonsville 410-788-5483 Weekly groups meet one hour on: TUESDAY NIGHTS OR SATURDAY MORNINGS Beginning week of Feb 10th, 2009 $125 for 8 week session, including snack. A curriculum focusing on generalizing skills toward making and enjoying friends and games: Having Fun! Greeting, Hosting, Conversation, Social Detection, Brain Gym and Self-Calming skills. Coaching and practice for parents. AGES 6-13 John Seaman, LCPC // Linda Lombardo, PhD. DON’T FORGET — IT’S TIME TO RENEW! 2009 HCAS ANNUAL MEMBERSHIP DUES 10 PERSPECTIVES Winter 2009 HCAS Elves Raise Funds on First Annual “Santa Night” By Ginny Bickell On Friday December 12, 2008, in the rush of holiday cheer, a merry band of (not-very-good) singers caroled throughout Columbia raising money for children and families. These 16 civic-minded merrymakers, dressed as Santas and elves, traveled by sleigh (bus) to 13 local establishments. There, they entertained patrons with great song and good cheer, collected donations, and spread goodwill. The goal of each singer was to raise $250 in donations to earn a seat on Santa‟s sleigh for the evening. All 16 Santas and elves reported a great time and proudly raised money for two worthy causes. Proceeds from this year‟s Howard County Santa Night went directly to the Howard County Autism Society and the Howard County Domestic Violence Center. Howard County is joining a fastgrowing list of communities that have embraced this effective, albeit amusing, fundraiser. Started in 1998 in Burlington, Vermont, Santa Night has grown in popularity and reach by leaps and bounds. Since then, every year on the second Friday in December, groups of people all over the nation participate in this unforgettable evening of merriment and fundraising. Reed Racette, a financial advisor for Provident Bank and Santa Night organizer (aka “Head Elf”), was responsible for putting on this wonderful event. Reed recently relocated to Howard County after living in New York where he led the Plattsburg Santa Night for five years. “Santa Night is a terrific opportunity to have fun and help others— it‟s a party with a purpose,” said Racette. “We hope this inaugural year for Columbia is the kickoff for many years to come.” PlayWiseKids Partners with HCAS PlayWiseKids has partnered with the Howard County Autism Society to offer HCAS members an after-hours, closed-to-the-public family playtime once a month. Beginning in February, PlayWiseKids will host an HCAS night from 5:00pm to 7:00pm on the second Thursday of the month. Upcoming dates are February 12, March 12, and April 9. Winter 2009 PlayWiseKids is a large indoor play and learning center designed for creative play with numerous handson activities, including a real fire engine, a beach area, dress-ups, foosball tables, and much more. All members will receive a 25% discount off the general admission price. There is a food court available for dining-in or, if you prefer, bringing-in. PERSPECTIVES For more information, contact Tim Vogt at PlayWiseKids 410-882-1540 or visit www.playwisekids.com. 11 Nicholas Helps Reveal the Meaning of Christmas This is the final article in a fourpart series by Cheryl Howard, a parent and teacher who lives in Howard County. Her son, Nicholas, is now 13. During the Christmas season, having a child with autism can be stressful, but it has also proven to be enlightening. Christmas has always been a holiday that reminds us that we are not a typical family. While we busily shopped and baked and decorated in anticipation of the holiday, Nicholas did not seem to pay much attention to what was going on around him. Things that we tried to do together to get into the spirit didn‟t work for him. Concerts were too loud, church was a time to laugh, lights were not interesting. It was impossible to plan any whole-family activities. Opening gifts seemed to be another ritual that Nicholas couldn‟t understand and had no interest in doing. On Christmas day, we always take turns opening gifts, which makes the process a bit longer but more meaningful to our family. Mark and I would encourage Nicholas to sit with the family and participate. It took years for him to understand that there was a reason to tear open the wrapping paper and that there was something more underneath that made it worth the trouble. Initially, he would tear the paper and walk away. In addition, the fine motor skills involved in removing ribbons 12 Journey Through Autism: A Mother’s Perspective Final in a series By Cheryl Howard and wrapping paper just made Nicholas frustrated and further wish to withdraw. When he did completely open a gift, he would often look at it with that “so what?” look on his face (a big disappointment for whoever had purchased it). When Nicholas turned 9, we bought a singing tree and a polar bear that entertained him for hours (but drove the rest of us crazy). The two battery-powered items sang a variety of the most popular Christmas songs. Just last year, at age 12, Nicholas discovered he could have them play almost simultaneously in some semblance of a duet. Buying gifts for Nicholas has always been a “shot in the dark” experience. It used to be that anything that made noise— Elmo dolls, books with sound, alphabet toys with buttons to push for some effect—MIGHT capture his interest for a time. (We knew he would play with them if only to get a stim out of the effect.) However, as he approached 11 years of age, this interest waned. He spent more time playing on websites, which provided us no help at all for gift ideas. We now have resorted to practical gifts for him such as socks, underwear, books, and DVDs; and even the books and DVDs are a gamble. PERSPECTIVES At times I think Nicholas‟ neutrality towards Christmas is a way to remind me of the real meaning of Christmas. The other day as our family was eating breakfast together, Nicholas had such a look of contentment on his face—a look that I‟d never seen with any gift or toy he‟s gotten in the past. Perhaps he‟s trying to tell me that what‟s important is our time together and the love we show to one another, not the material or superficial things typically associated with the holiday. Somewhere in the multitude of New Age books I‟ve read, it is said that individuals with disabilities are actually old, wise souls who have chosen to return to this life as a growth experience. Perhaps Nicholas‟ growth experience is also meant for us, providing us with a particularly enlightening lesson during this Christmas holiday. * * * Previous articles in this series: “A Mother‟s Journey through Autism” (May 2008), “After the Diagnosis and the Preschool Years” (Sept 2008), and “The Elementary Years: Communication Stalls Out” (Nov 2008). Previous editions of the newsletter are available at www.howard-autism.org. Winter 2009 Stephen Shore Workshop ~ May 2, 2009 Supporting People with Autism for Successful Transition to Adulthood (Parents: It’s never too early to start planning.) Back by popular demand, Stephen Shore returns to Columbia on Saturday, May 2, to discuss adult issues for people with autism. In this half-day workshop, Stephen will discuss: the interplay between behavioral, educational, developmental, biomedical, and sensory integration interventions for people with autism; Saturday, May 2, 2009 9am—1pm Howard Community College, Smith Theatre social and self-awareness; Registration at 8:30. Registration fee $50/person. Includes breakfast. the skills necessary to navigate the adult worlds of: employment, relationships, continuing education, interdependent living, and appropriate self-advocacy. Registration due by April 27, 2009. Stephen Shore—who was nonverbal until four, diagnosed with “atypical development with strong autistic tendencies,” and recommended for institutionalization—received his Ph.D. from Boston University and is currently a professor at Adelphi University. He teaches courses on special education and autism, and is internationally recognized as an expert on adult issues. He is the author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome; Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum; and the critically acclaimed Understanding Autism for Dummies. He serves on the Interagency Autism Coordinating Commission and the Board of Directors for Autism Society of America, Unlocking Autism, MAAP, the College Internship Program, and USAAA. Register online at www.howard-autism.org Call 410-290-3466 Proudly sponsored by the Howard County Autism Society in cooperation with: Howard County Asperger’s Support Group & Howard Community College ART FOR AUTISM A one-of-a-kind priceless piece of art by individuals on the autism spectrum. This 16x20” canvas will feature brush strokes by individuals with autism in Howard County. The framed artwork will be auctioned at the Pieces of the Puzzle Gala on April 25, 2009. ~ MAKE YOUR MARK at the open house on MARCH 7 (9am—noon, at the HCAS Resource Center) ~ PLEASE BE A PART OF THIS UNIQUE GIFT— One brushstroke from each person is all we need to make this truly magnificent! Winter 2009 PERSPECTIVES 13 Upcoming Events For updated events information, visit the HCAS calendar at www.howard-autism.org/pn/calendar.html January 31, 2009 ~ Sensory Friendly Movie HCAS and AMC Columbia present a sensory friendly showing of “Hotel for Dogs” at AMC Theatres Columbia Mall. Doors open at 9:30 a.m. Movie starts at 10:00 a.m. with no trailers. Tickets are $6 each. For more information contact Marianne Ross, rossfda@hotmail.com. February 11, 2009 ~ Autism Workshop “Demystifying Autism: An Inside-Out Perspective” with speaker and author William Stillman. 9:30 a.m.-4:30 p.m. Baltimore. For more information contact Gail Godwin at 410- 945-4356 or gail@sharedsupportmd.org. February 12, 2009 ~ Howard County Asperger’s Support Group Meeting Guest speaker Susan Potts from the Howard County Department of Recreation and Parks will present on spring and summer opportunities for fun. 7:30-9:00 p.m. Howard County Autism Society Resource Center, 10280 Old Columbia, Suite 215, Columbia. The Asperger‟s Support Group meets the second Thursday of every month. Contact Elaine McAuliffe, 410-730-0068 or elainemcauliffe@yahoo.com. February 17, 2009 ~ Howard County Library Book Connections Discussion Group Panelists (including representatives from HCAS) will discuss Elizabeth Moon‟s The Speed of Dark. 7:00-9:00 p.m. Howard County Library, Miller Branch. 14 February 19, 2009 ~ Howard County Autism Society Support Group Meeting Guest speaker Alan Becke, MBA, CFP, with Metropolitan Life will discuss special needs wills and trusts. 7:00-9:00 p.m. Howard County Autism Society Resource Center, 10280 Old Columbia Road, Suite 215, Columbia. For more information call 410-290-3466 or www.howard-autism.org. March 7, 2009~ Art for Autism: “Leave Your Mark” Open House All kids and adults with ASD are invited to contribute to a beautiful piece of framed artwork to be auctioned at the Pieces of the Puzzle Gala. Only one brush stroke from each person is needed to make this a truly inspiring gift. 9:00am-noon. Howard County Autism Society Resource Center, 10280 Old Columbia Road, Suite 215, Columbia. For more information call 410-290-3466. March 19, 2009 ~ Howard County Autism Society Support Group Meeting Guest speaker Catriona Johnson will discuss the Developmental Disabilities Administration and its waiver programs. 7:00-9:00 p.m. Howard County Autism Society Resource Center, 10280 Old Columbia Road, Suite 215, Columbia. For more information call 410-290-3466 or www.howard-autism.org. March 31, 2009 ~ Video Conference with Elizabeth Moon Elizabeth Moon, author of novel The Speed of Dark, will discuss the novel via live video-conference. 12:30-2:00 p.m. Howard Community College, Monteabaro Recital Hall, 10901 Little Patuxent Pkwy, Columbia. PERSPECTIVES April 20, 2009 ~ Autism Research, Education, and Advocacy: What You Need to Know Presented by Marjorie Shulbank, Maryland State Department of Education. Learn about AutismConnect, an online resource that focuses on research, educational resources, and advocacy organizations available to families in Maryland. Reception follows. 7:00-9:00 p.m. Howard County Central Library. April 23, 2009 ~ Celebrating Autism’s Gifts: The Power of Affirmation Deborah Lipsky, diagnosed an adult with HFA, will discuss with Dr. William Richards how the transformative power of friendship has empowered her to embrace her autism. Books will be available for purchase and signing. 7:00-9:00 p.m. Howard Community College, Monteabaro Recital Hall, 10901 Little Patuxent Pkwy, Columbia. April 25, 2009 ~ Howard County Autism Society Fourth Annual “Pieces of the Puzzle” Gala 7:00 p.m.-midnight. Ten Oaks Ballroom, 5000 Signal Bell Lane, Clarksville. Tickets are $100. For tickets call 410-290-3466 or www.howard-autism.org. May 2, 2009 ~ Stephen Shore Presents “Supporting People With Autism for Successful Transition to Adulthood” Registration fee is $50; breakfast is included. 9:00 a.m.-1:00 p.m. Howard Community College, Smith Theatre, 10901 Little Patuxent Pkwy, Columbia. For more information or to register, contact HCAS at 410-290-3466 or www.howard-autism.org. Winter 2009 HCAS MEMBERSHIP CHANGES IN 2009 In an effort to improve and streamline membership with the Howard County Autism Society, membership renewal is changing in 2009. All memberships will need to be renewed annually in order to remain active. Membership with the Howard County Autism supports the organization’s efforts to provide support to individuals with autism and their families, advocate for improved services, and promote greater public awareness of autism. Please visit our website, www.howard-autism.org to join online. In an effort to ―go green‖ we hope to institute an email portion of our communication with members – stay tuned! Membership Levels Family $20 Professional $50 Benefits of Membership Access to a community that provides support and information to local families living with autism. Valuable resource information and advocacy for autism-related issues within the community. Perspectives newsletter– mailed four times a year. Monthly support group meetings with guest speakers. Notices of upcoming events, speakers, and conferences. Several FREE social events— including winter and summer pool parties. Share Your Time and Talent Interested in volunteering at the Howard County Autism Society? We could use your help! We have many active committees that are always looking for new members. Adult Issues Committee Advocacy: Educational Issues Advocacy: Legislative Issues Gala Planning Committee Program Committee Public Relations Committee Walk Planning Committee If you are interested in serving on one of these committees, please contact Ayana Rodgers at acrodgersHCAS@yahoo.com or 410-290-3466. Howard County Autism Society Membership Clip and return with check to: Howard County Autism Society 10280 Old Columbia Road, Suite 215 Columbia, MD 21046 Join us! $20 annual family dues Name________________________________________________________________________________________ Address______________________________________________________________________________________ City_____________________________________________ State________________ Zip Code______________ email___________________________________________ Phone_______________________________________ 2009 Dues: $20 (parent membership) $50 (professional membership) Donation: $50 $100 Other $__________ HCAS gratefully acknowledges donors in its newsletter. If you prefer your donation to be private, please check here Clip and return with your check payable to Howard County Autism Society or join online at www.howard-autism.org Winter 2009 PERSPECTIVES 15 About the Howard County Autism Society (HCAS) The Howard County Autism Society (HCAS) is a chapter of the Autism Society of America, which was founded in 1965 to help parents, family members, professionals, and caregivers learn about autism, PDD, and related disorders, and how to effectively deal with these disabilities. We are one of about 200 chapters across the country. HCAS is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families and the professionals with whom they interact. The national society and HCAS share the common goals of providing information and education, supporting research and advocating for programs and services for people with autism spectrum disorders. HCAS works in Howard County to advance awareness of persons with autism, PDD, and related disorders. Autism Resource Center 410-290-3466 HCAS provides: support for parents information and referrals advocacy on behalf of persons with autism/PDD and their families presentations by experts on autism/PDD, disability rights, etc monthly meetings social activities Join the Yahoo e-Group The HCAS e-group connects you with other parents online where you can post questions or share information about doctors, dentists, schools, family support services, etc. To join: (1) go to Yahoo Groups (2) search for AutismSocietyHoCo (3) subscribe Or email: AutismSocietyHoCosubscribe@ yahoogroups.com Howard County Autism Society 10280 Old Columbia Road, Suite 215 Columbia, MD 21046 www.howard-autism.org Newsletter Submissions Perspectives—the newly named quarterly newsletter—welcomes articles and contributions from parents, siblings, professionals, and people with autism spectrum disorders. Submit your article, book review, meeting notice, or photo by emailing to: acrodgersHCAS@yahoo.com. Perspectives is published quarterly, with Winter, Spring, Summer, and Fall issues. Advertising rates are available on the HCAS website at www.howard-autism.org. For more information on ad specifications, deadlines, and submission instructions, contact Ginny Bickell at 410-290-3466/ gbickellHCAS@howardautism.org . NON-PROFIT ORG. U.S. POSTAGE PAID PERMIT NO. 901 COLUMBIA, MD 21045