A Publication of The Center for Exceptional Families Oakwood Healthcare System

Through our Medical Home Model of comprehensive and innovative rehabilitation care,

Children with Special Needs and their Families will be supported throughout their unique

life journey.

They will evolve and grow in strength to advocate for health, education, independence and

community inclusion.

They will learn to negotiate the joys and realities of living with differing abilities, and they

will emerge as young adults and families able to pursue their own dreams.

I don‘t know about you, but I don‘t generally read the mission statement of most organizations. Mostly I care that when I enter an establishment I get what I came looking for. For example, I am a lover of Starbucks coffee. I stop on my way into work daily. When I stop, I have an expectation that my Grande Non-Fat Latte will be a certain temperature with 2 shots of the best espresso in town. I like very little foam and lots of frothed milk. It‘s the same every day, and there is something about that consistency, that predictability, that makes me want to stop. I am one of those they know by name. It may seem a little indulgent. I think it is. It‘s one of those little pleasures in life that I enjoy as my own. I don‘t think that I have ever read the company‘s mission statement. If I had to guess, though, I would bet that their mission statement is full of all of the things I just mentioned… making quality coffee, consistently, with friendly predictable service EVERY TIME. I am guessing that most of you reading this newsletter have not ever really read or considered that fact that we have a mission statement. Not to worry. We know that most of you have either stumbled upon the Center for Exceptional Families through your Pediatricians or by word of mouth from other families. Some of you thought this would be just another medical consultation or a closer place to get your therapies. Perhaps some of you had heard that we were ―different‖ and that made you check us out. Regardless of how you came, if you got what you were looking for you stayed. And some of you have shared with us that you didn‘t know at all what you needed, and you found ―it‖ at the Center. What you need to know about us at the Center for Exceptional Families is that we desperately care about our mission statement. We have spent numerous hours painstakingly trying to define in words what we hope to be to the families we serve. So, if you don‘t mind, I would like to take a few moments to spell out to you a few of the highlights from the mission statement written above. We want you to know ―what you are getting yourself into‖ so to speak. And truthfully, we want honest feedback about how we can grow to do ―it‖ better. We want the Center to feel like ―home‖ to you. We know that our families spend a lot of time going to therapy and doctors appointments. We don‘t want our office to feel like another medical visit. We want you to be known, your stories heard, and your kids enjoyed. We want to be your family, too.

Summer 2009

We strive to provide state-of- the- art, up to date, innovative medical and rehabilitation care to your child. We want to ―be the best‖, and we will do everything we can to continually improve the care we give. We also want to be providers that are ―open minded‖ and ―think outside of the box.‖ In fact, I tell families all the time that I live a huge chuck of my career ―outside the box.‖ I honestly use to be a little concerned about getting a reputation for being a ‗little out there‖ in my thinking. Now I celebrate it, because I know it drives us to give better care. We strive to serve your whole family- not just the child who has challenges. We care so much about the life of your typically developing children as much as your child with special needs. Their journey is unique too, and we do ―get that.‖ We hope to help you preserve your struggling marriages or manage as single parents. We know that many of you are smoldering with depression, anxiety over your child‘s future and that many of you are even struggling with overt addictions. You need real help. We care about it all. It is all part of the journey. We pray that as we work together- your family and our staff and volunteers - that you will gain strength. We so want to help you get past the fears that paralyze you or leave you exhausted and help you land safely in the powerful place of ―advocate‖ for your child. There are school laws to understand, therapeutic rehabilitation programs to conquer, transitions to overcome and the wonderfully frightening world of ―inclusion‖ to explore. It is our desire to help you understand, conquer, overcome and explore. Finally, we know that some days will feel victorious and others will feel like defeat. We want to be there beside you in that journey of ups and downs and help you negotiate all of those moments on this journey that you did not choose for yourself. Yes, we know that you did not choose this journey. It came to you. Unexpected, it entered into your life. We hope to help you to get to the place where you can once again live your dreams- new dreams- for you, your child, and your family. So the next time you come to the center take a good look around. As you wander through the suite you will see our mission weaved in word art throughout. It serves as a reminder to us and as a vision to you of all we hope to be as your ―Center for Exceptional Families extended family‖. Come with your questions, your fears, and your victories. Let us be predictable, consistent, friendly EVERY TIME. Let us know you by name. Dr. Susan

Electronic Newsletter Sign Up Still Available: We are continuing to build the Exceptional Families News database. If you would like to help us reduce printing cost, we would be happy to deliver the newsletter to your email inbox. If you want to receive Exceptional Families E-newsletter please email: oconnorm@oakwood.org with the word E-news in the subject line; we hope to have the technology in place before the New Year. Please note your email address will be used solely for distribution of the e-newsletter.

Group

My name is Mike O‘Malley. I am one of two new part time social workers at the Center for Exceptional Families. We have started a dad‘s group that will meet approximately once a month. Our activities will range from attending sporting events, to rebuilding the wheelchair swing at our facility, or helping a single parent with a project. Please join us, along with other dads who truly understand what it is like to have children with special needs. My work phone number is (313) 996 – 1989. If I am not working, please leave a voice mail and I will get back to you as soon as possible.

Amanda Jurysta passed her drivers permit. Bryan Desana is a member of the National

Honor Society. Jack Regnier received all A‘s Nicholas

Ratcliff won the award for Most Improved at Lincoln Elementary.

Bianca Soto represented her class from Burger School at an award ceremony since they won the Entrepreneur Classroom of the Year.

The Program for Exceptional Families would like to salute and recognize the wonderful accomplishments of our patients, staff, and volunteers. Please contact us so that we may recognize your accomplishment. Feel free to email information to oconnorm@oakwood.org or call: (313) 294-1531

Angel Food Ministries Angel Food Ministries provides discount groceries to anyone interested in saving money. Angel Food is a national, non-denominational ministry designed to offer a helping hand to families. They offer food that is good quality, no second hand items, no damaged or out-dated goods. By purchasing food from suppliers at a substantial volume discount, Angel Food is able to provide a family of four with one weeks worth of food valued at approximately $65 or food for a family of four for one-week worth of quality nutritious food for $30. There are no applications to complete or qualifications to use this program. Currently they are 235-host site in Michigan. Each month‘s menu is different and consists of fresh, frozen, and packaged food. Angel Food offers ―specialty boxes‖ for senior citizens, allergen free, and meats. For more information visit Angel Food on the Internet at www.angelfoodministries.com. If you do not have Internet access you can call Angel Food Customer Service at 1-888-819-3745

Bulletin Board The Center for Exceptional Families is offering free tutoring. To register your child for fall 2009,

for more information please contact the office at (313) 996-1960.

The CFEF is hiring PTA, OT and SLP therapists for flexible hours. If you know any great pediatric therapist please have them contact Tammy Morris at morrist@oakwood.org

Thank you to the Oakwood Healthcare System Foundation, Community Benefit Fund for publishing Exceptional Families News.

Spectrum Support The Center for Exceptional Families offers a support group, for parents of children with autism. The group includes emotional support, education, and friendship. The Group meets every 3rd Wednesday of the month at 6:30 p.m. in the Clinical Learning Center at 18501 Rotunda Dr. Suite 100, Dearborn. All parents are welcome to join anytime. For more information please contact: Jenn Dyke at: JennRN@wowway.com

Donors Are Our Heroes

It came to my attention recently that many people may be unaware that the Center for Exceptional Families is dependent on donor support to be able to provide the services we offer to you and your families. Nearly half of the Center‘s annual operating expenses are funded by donors. Many of the programs we run (Sibshops, Fun Day, Teenage Girls Night Out, Teenage Boys Night out, Kids Birthday Party, and our Teen Leadership initiative) are completely funded by philanthropy. The need for philanthropic support is necessary to offset the cost of the time we spend coordinating each patient‘s care plan, writing letters, signing prescriptions, and communication with community resources.

It is important to us that you are aware of the generous giving that many people offer to allow us to help you and your child. Our new facility was a very big philanthropic initiative, and on April 16th at our Community Open House and on May 2nd at this year‘s Red Tie Ball we will be celebrating the generous support of all of our donors.

I would ask that everyone who loves the Center be on the lookout for potential donors and sponsors for our programs and events. We are also always appreciative for any financial gifts that you can give yourselves. My desire is to be able to continue, and even expand the services we deliver over the next five years. So next time you are in the Center say a little thank you as you enter the suite for the generous folks who make it possible. Our donors are our heroes!!! We are richly blessed by their generosity.

Surveys Oakwood Healthcare System and the Center for Exceptional Families are committed to Service Excellence. In order to help us create a great environment and provide high quality services to our customers we regularly ask patients and families to complete survey questionnaires. Many of you might be wondering what we do with the information obtained from the surveys. Once all of the month results are tallied then they are submitted to administration, reviewed by the Centers management team and shared with staff. It is the goal of the Center to have a 90 percent satisfaction rating. The entire staff and management team take this very seriously and do use the information to improve services. Thanks to your feedback and comments, we were made aware that several families would like a quiet place to wait for their appointment. The office is able to offer a quiet place for patients to wait, please just ask staff. Please take a few moments to complete surveys if asked so that we can continually improve our services.

Teens Take Over Leadership Training for Teens with Disabilities Attention all teens and young adults of the Center for Exceptional Families. If you have not yet attended one of our ―Teens Take Over‖ Saturday events, then you are missing out on an incredible opportunity. We meet one time per month on Saturday afternoons from 1:00 - 3:30 pm at the New Rotunda Center in the Clinical Learning Center. Led by ―not too old‖ adult facilitators who themselves have overcome the challenges that come with their own disabilities, our teens and young adults participate in fun and stimulating activities that help them connect better with the disability community at large and learn how to become self-advocates to move toward a future of living their own dreams. Topics we have covered so far include what it means to be oppressed and what it means to be empowered; independent living, driving, and soon we‘ll be tackling the ―dating‖ questions. Attention Parents: don‘t freak out as your teen or young adult grows in their ability to live their dreams. Come join the parent group that meets at the same time and learn more about all of the community resources that are available to you to help your child move toward independence.

TEENS WHO ARE READY TO “TAKE OVER”

On Friday, June 9th The Center for Exceptional Families held a celebration barbeque to honor the Teens who participated in the first year of our Teens with Disabilities Leadership Development Program called, ―Teens Take Over.‖ During the last year approximately 20 Teens met monthly to grow in their leadership skills. The goals of the program were three-fold: 1) To grow in knowledge and understanding about the power of being connected to the disability community; 2) To grow in seeing oneself as a leader and finally; 3) To become an agent of change for oneself, others and society. At the event we also celebrated the successes of the parents who participated in the ―Parent Group‖ that ran concurrently with the Teen Group. The barbecue and discussion allowed us to share what we learned over the year. The Teens expressed that they learned not to rely on their parents for everything, and that they could do so much more for themselves. They shared that they know better what it takes to live independently and that part of their responsibility is to look out for the needs of their friends who also have disabilities. Parents shared the power of learning about ― MAPS,‖ the importance of having ― expectations ― for their Teen, the importance of dreams to their Teens, and they commented continually about how great it was to have facilitators who themselves have overcome the barriers of their own disabilities and are living independently in the community. For a ― first run‖ of a program, there was so much learned by all. We want to congratulate the Teens who participated. They include: Sarah Campbell, Alex Choly, Michelle Ellswood, Jill Erickson, Ashley Harper, Brittany Jasso, Porcha Jordan, Edward Lofton, Samantha Marker, Alyssa McGlynn, Jousseline Rakes, Briggs Parry, Austin Parks, Robby Spellman, Jay Upadhya, Bainca Soto, Patrick Springstead, Sarah Swagler, Najee Treadwell, and Erica Wolfe.

Kudo Kudo Korner

Kudos to Ian N! He is starting to enjoy many new foods. Don‘t leave any cookies in his reach…. he can get there by himself, because he is now unstoppable with his walker too!! Kudos to Jessi G! She is now able to sit by herself for several minutes while playing with new toys!! Kudos to Morgan P! His cancer is in remission! He is getting so strong he can ride a scooter and use roller skates, and he will talk your ears off!! Kudos to Rowdy M.! Rowdy is now able to run, and beats his PT without breaking a sweat! Way to go!!!!

Sibshops Do you have a child between the ages of 7 and 12 or 13 and 18 years old who are the siblings of a person with special needs? Are you looking for an opportunity for them to express their feelings and concerns? Sibshops provide kids with opportunities to learn from others, to see that they are not alone. If your child would like to have a fun, action-packed evening that helps them explore their feelings contact Michelle Teklinski, MSW at (313) 996-1968.

Trikezilla tricycle (A New Product) Learning to ride a bike can be particularly difficult for some kids with special needs, many of whom have enough trouble keeping their balance when walking, much less riding. Special bikes can cost upward of $2,000.00.At last you can have your bike for under $300.00 and it will work and function better than all of the very over priced bikes. At TrikeZilla we now have a unique patented "bicycle (to) tricycle " carriage conversion kit. The TrikeZilla conversion will turn any bike into a special bike your kids will be proud to show and ride. Your child can pick a bike from any bike shop and in 10 minutes have a bike of their own. ****This carriage conversion WILL HOLD 300 lbs. ***Adapts to any single speed bicycle (must have a front hand brake) ***16" 18" 20 " Wheels. As your child grows just replace the wheels. The 20" model is our most popular **** Fixed Gearing (turns like traditional trike) or FREE WHEEL coasting when you stop pedaling. The carriage can transfer from bike to bike as the kids grow by using a larger tire.

Welcome Hi! As you will read in the newsletter, my name is Sheryl and I‘m the new part-time social worker here at the CFEF. I will be doing a 3-part series on transition for our teen and young adult population and their families. Planning for the future of your child with special needs is an ongoing process. What is perhaps difficult to envision is that the child or teen you see before you today will grow to become a young adult with capabilities and needs in the areas of work, housing, personal finances, transportation, recreation, friends and the many other areas we all face as adults. The first part of this series will focus on Transition and the legal role the school must play once your child turns 16 years old.The wording in the previous Individuals with Disabilities Educational Act (IDEA) indicated that transition was to focus on functional tasks. The 2004 IDEA revisions state that transition goals also need to take into account the student‘s strengths and interests. All transition plans need to address the follow areas:

FURTHER EDUCATION: Is your student focusing on a vocational track or a diploma track? Start exploring where your teen wants to go after high school and the admission criteria. Know your teen‘s learning style.

ADULT LIVING: Includes where does your child want to live, (in the city, county) house, apt., including what kind of support they may need to live more independently. Registering to vote, obtaining a driver‘s license, and other adult roles should be addressed in this area.

DAILY LIVING SKILLS: Budgeting, cooking, housing cleaning, etc should be explored. COMMUNITY EXPERIENCES: Any community opportunities your child may have – for example,

volunteer programs, participating in church/religious activities, community sports teams. EMPLOYMENT: Includes all aspects of employment. What kind of jobs is your teen interested in? If

they‘re not sure, then the vocational evaluation can help but they may also benefit from doing a few job shadows (MRS can assist with this). Career awareness programs at school may be considered, too.

FUNCTIONAL VOCATIONAL EVALUATION: May overlap with the Employment section, but specifically underscores the importance of collecting information on your child‘s strengths/weaknesses relative to employment. Your school‘s transition coordinator may do this. Michigan Rehabilitation Services (MRS) is also an agency which should be involved and can assist with community based job assessments.

RELATED SERVICES: Begin exploring community agencies that will assist you and your teen through the transition process, including adult providers of therapy and investigating Community Mental Health and Social Security assistance.

We will explore in depth about community agencies and the roles they can play during the IEP process. It is important to have your teen involved with his/her IEP to the fullest extent possible, but it is crucial to have them start attending around age 16. It is also a good time to start talking to your teens about their disability and making sure they have their own way of explaining their disability to peers and adults. The most important thing to keep in mind when you‘re about to attend your teen‘s first transition IEP is to familiarize yourself with the categories and have an idea of what would fit best for you and your teen. Starting the transition process can be an overwhelming and scary process but if you empower yourself and your teen in the beginning, it can be a rewarding one for both of you. The most fulfilling outcome will be your teen receiving the supports and services needed to grow to into a well-rounded adult, living life to their full potential. Please help us welcome Sheryl Stumbaugh to the CFEF staff. Many of you already know Sheryl from her role as a facilitator from the Teen Leadership Group. Sheryl is a graduate from the University of Michigan School of Social Work with a specialty in Child, Youth and Family. Sheryl brings a wealth of knowledge on transition planning and advocacy. Please introduce yourself to Sheryl and Kahlua her service dog the next time you are in the office.

The 2009 Birthday Party was a big success. Around 30 children between 9-11 joined volunteers and staff at Roosevelt Lanes for bowling, pizza, cake, and fun. Many of our patients have never had an opportunity to attend a birthday party, so the CFEF provides this experience. It is our plan to continue to offer these experiences annually. If you are interested in additional resources for therapeutic recreational activities please contact: Michelle Teklinski, LMSW at (313) 996-1968

Makes a Splash at our new Rotunda Center Tammy Morris, M.A., CCC-SLP

This year 24 young children with speech and language delays participated in our Speech Train motor speech camp and our Label-less Language-based camp. Drop offs were chaotic at times, given that for some children this was their first time separating from parents! Children enjoyed participating in interactive activities to address social skills, sensory and language-based crafts and activities, speech practice drills, and carryover activities.

The 4 week- long session of All Sports multidisciplinary camp for children with special needs was also full of action and fun. We provided PT, OT, and Speech Therapy activities in the context of camp to children from ages 4-20. The splash pad in our back yard was a huge hit with many soggy kids and therapists! Therapists enjoyed the opportunity to get kids riding bikes and scooters for the first time ever, playing in the sand and water for the first time, trying new foods, saying new words, and of most of all…making new friends!

Thank you to all of the families who participated, to our U of M School of Education partners, including 12 certified teachers who helped with staffing, to the Oakwood Southshore Auxiliary who provided funds for camp supplies, to our therapy interns and super-planners, and to our awesome volunteers- Miss Heather, Mr. Tim, Miss. Zhela, Miss Behgih, Mr. Jerrod, and our runners Mark and Jackson.

OAKWOOD CENTER FOR EXCEPTIONAL FAMILIES

September 27TH 1:00 PM-4:00 PM

Be a part of Fun Day This year we are offering a special opportunity to The families in our program who have expressed an interest in participating in our annual Exceptional Families Fun Day. This year we are offering a few special ways you and your family can help out. Please contact Trish @ oharep@oakwood.org or call 313.996.1967 If you: 1. Would like to bring a picnic dish to pass? We have a full kitchen to keep food cold and/or hot. 2. Have access to special event/festival equipment? (i.e. moon walk, snow cone machine, prizes, crafts) 3. Know a clown, magician, or entertainer? We are also going to be holding an audition for a very special talent show. Contact Trish O'Hare with if your child has talent. We will contact you with audition information once we have heard from you.

Alien? Not At All By Sanjay Upadhya As new immigrants with a child with special needs, my wife Ranu and I set out on a search six years ago for opportunities for our son Jay. We had few relatives and friends in Michigan, with no one to turn to as far as Jay‘s immediate needs went. Born with Down‘s Syndrome, Jay required specific interventions. That much we knew. But what kind of special programs were available? Where could we find the right therapists and counselors? Unbeknownst to us then, we as parents were also searching for a firm support base in Michigan. Then someone directed us to the Oakwood, Center for Exceptional Families and Dr. Susan Youngs. Things started falling into place faster than we expected. When we received and invitation from Dr. Youngs in 2008 to sign up for the new Teens Take Over program, we did not really know what to expect for Jay or for us. At the first session, I got a clear sense that this was going to be a close-knit group of parents with shared concerns and aspirations. The ―ice-breakers‖ really melted the room into a venue of common purpose. Jay, too, came home with his own share of thrills. Over the months, as the facilitators shared their personal stories of triumphs and setbacks, the parents opened up with remarkable candor. With some hesitation, I, too brought up some of the difficulties Jay was facing at school. The parents offered useful suggestions on discussing the issues with school administrator. Many explained the rights and privileges Jay enjoyed as a special-education student. With a great sense of empowerment, I could resolve many of the issues satisfactorily. Since Ranu worked on the weekends, she could not attend any of the sessions. As a non-citizen, Jay did not immediately qualify for many key services. I would review my notes with Ranu to understand what we could expect and whom we could pursue when time came. I discovered that no question was unintelligent to ask. No plea for help was construed as demanding. No parent considered my questions about their specific situations intrusive. At the conclusion of the exercise, our file was filled with information on an array of services available, pitfalls to avoid, and even specific contacts to pursue. For immigrant parents like us, especially those who tend to perceive cultural barriers even in places where they do not really exist; this experience has been truly transformative. We have a word of advice to all of those who share our background: Come out with your concerns, and you will be surprised at the outpouring of support. Thank you everyone for this enriching experience.

CENTER FOR EXCEPTIONAL FAMILIES

The Center for Exceptional Families will be offering Martial Arts Therapy Fitness Class starting in the fall. The class is designed for individuals with disabilities to participate in the martial arts. Participant disabilities are varied and have included:

ADD/ADHD Autism Cerebral Palsy Closed Head Injury Spina Bifida Sensory Integration

Anyone is encouraged to participate. The program fosters social skills by featuring group environment with rules of etiquette and helps improve balance, coordination and strength. For more information visit their web site www.martialarts-therapy.com or by phone (517) 223-7449 or (248) 969-3705. Class registration forms are available at the Center for Exceptional Families. The class will meet on Mondays starting in the fall of 2009.

Rotunda Fit Zone

Oakwood’s Family Center is pleased to offer 2 classes:

1 hour Full Body Workout Tai Chi-Yoga-Pilates Strengthen and tone Increase flexibility Burn over 600 calories Build strength Improve overall fitness Improve Balance Leave feeling fit & energized Leave feeling centered & calm

Thursdays 6:15-7:15 pm Mondays 12:30 - 1:30pm September 10th – October 29th September 14th -November 2nd

Who: Oakwood/UMD Parents, Staff, Friends

Where: Oakwood Family Center – CLC

Cost: $25 each (8 Weeks) or $40 for both or $5 drop-in/class

Please Wear Comfortable clothing and tennis shoes and be sure to

bring water, a yoga mat, and a small towel.

Please return bottom portion to Tammy Morris (CEF) or Debbie Jones (UMD) with cash or check (made

payable to Cathy Zahina) by August 28, 2009.

Full Body Workout—Thursdays 6:15-7:15 pm (limited to first 16 paid sign-ups)

Tai Chi/Yoga/Pilates –Mondays 12:30-1:30 pm Both classes $40

NAME ________________________________ PHONE NUMBER _______________________ EMAIL_________________________________

Oakwood Healthcare System

Center for Exceptional Families 18501 Rotunda Dr. Suite: 200 Dearborn, MI 48124 (313) 996-1960 Susan Youngs, M.D. Director

Michelle Teklinski, LMSW Editor

Azy Eftekhari Graphics and Design

CEF Media Picks

Books:

These books have been recommended by family and staff as good resources.

- The Goodenoughs Get In Sync by Carol Stock Kranowitz, Written for children ages 8-12 to help them understand sensory integration dysfunction.

- After the Tears by Robin Simons, It is a collection of stories from parents about what it is like to raise a child with a disability.

Helpful Websites

www.ahead.org Association on Higher Education and Disability. Transition resources for parents and professionals through college and beyond. www.mfia.state.mi.us/mars/ez_track/MARS000.aspinal MARS- Michigan Assistance and Referral Service. By completing a self screening questionnaire you will be given information on potential services you or your family might be eligible in the State of Michigan. www.bikeprogram.org Programs to Educate All Cyclists (PEAC). PEAC helps individuals with cognitive, physical and emotional disabilities reach their cycling goals. www.JuliesList.homstead.com Online resources for Metropolitan Detroit area. Numerous topics; medical resources, clothing, disability resources, financial assistance to name of few. Check out the web site its full of information.