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Get Up, Your Bus is Here, by Stephen Dantzig, Psy.D
“One day I was walking to the bus and caught an icy patch and wound up face down in the snow. My mother stood true to Dr. Shelsky’s word and with tears in her eyes told me to “Get up. Your bus is here.” She would have obviously helped me if I was hurt, but the early message to me was also clear; I was going to learn to fend for myself...”
Dr. Stephen Danzig's tenth book is by far his most personal to date. “Get Up, Your Bus Is Here” Living MY Life With Cerebral Palsy: Trials, Tribulations and Triumphs chronicles his life growing up with Cerebral Palsy and details his successes as well as his struggles. He candidly talks about additional challenges brought on by Kienbock's Disease and the two wrist fusion surgeries that followed. Battles with obsessive-compulsive tendencies are also brought to the forefront. Dantzig talks about his parents and their influence on his independence, modifications needed in his early days in elementary school and follows his educational career through earning his doctorate in psychology from Rutgers University. He details his development and life lessons learned as a school psychologist working with severely disabled children, professional photographer, and author. He talks about living with a ghost in New York, life in Los Angeles, and his big move to Hawaii. Dantzig relates his experiences on skis, the softball field, a surfboard, and under water with SCUBA gear. His stories are often poignant with subtle humor. His struggles are discussed in a matter-of-fact way that denounces self-pity while his triumphs are talked about with humility. Dantzig provides resources and references for anyone looking for more information on the many topics discussed. 30% of all proceeds will go to United Cerebral Palsy of Eastern Connecticut. Purchase the book today by clicking the link below.
Click here to order the book and visit Stephen Dantzig's site.
Baby Sign Class Coming to UCP
Would you like to communicate with your child, but maybe they do not have the verbal ability to communicate their needs? Maybe your child is developmentally delayed or maybe they are very young and haven't developed many verbal abilities yet. SARAH, Inc. KIDSTEPS is running a "Practical Sign Language" class at UCP Friday mornings from 10:30am-11:30am from February 24th to March 30th. The class is for 1-21/2 year-olds. It is open to typically developing, as well as developmentally delayed children. When children can communicate through sign-language, their frustration level greatly decreases (and that as the caregiver as well!). Sign language also helps with the parent/child bond, accelerates language acquisition, and boosts the child's self esteem. Learn sign language to help you and your child with everyday activities. You can communicate with your child long before their verbal ability to communicate wants and needs is there!
To learn more and to get information on how to register, please visit:
http://www.ucpect.org/uploads/media_items/sign-language-flyer.original.pdf
UCP Clients' Art Now on Display
You can't miss it! As soon as one enters the Hygienic Art Gallery in New London, they are captured by the Art of UCP clients. To the right of the front entrance, splashes of blue, green, pink, yellow, and orange speak of the importance of their wheelchair to our clients. "These wheels work like feet. I can GO," states the boldest print. "I am happy Monday through Friday and Saturday and Sunday too," exclaims another. According to a volunteer at the Hygienic, people have been captivated by the piece.
The piece is part of the Salon des Independents exhibit and will be on display until 6pm on February 11th. Stop by and see the world through the eyes of UCP's Quaker Hill Day Program clients. Bring an open mind, because as the painting enlightens, "Preconceived notions are the locks on the doors to wisdom."
UCP Clients to Enter Art at the Hygenic
This weekend, the Quaker Hill Community Experience Program (CEP) will be entering a piece in Hygienic Art's Salon des Independents exhibit. This is the 2nd year the CEP has put a piece in the exhibit and once again, it is a great representation of the clients we serve! The inspiration for this piece derived from a poem written by Chuck and Pete, two clients who have been participating in the CEP for many years. Due to their physical disabilities they are unable to walk, which inspired them to write this poem:
My Wheelchair
By: Chuck & Pete
My wheelchair is like walking.
It helps me to get around. Helps me to get around.
I can recline and incline, I have all different speeds.
It gets plugged in so that it can charge.
It needs to be cleaned as if it were a car.
These wheels, they work like feet.
I can go to school in my chair also.
I like it better than my stander.
It helps me to do things every day.
I can go to baseball games, basketball games and football games.
I would be very upset if someone took my chair away from me.
It is comfortable.
When there is a fire drill my chair gets me out of the building fast.
I would like a massager on my chair.
I would like mirrors so I could see in back of me.
I would like a voice activated telephone.
I need long brake handles.
I would like a license plate with my name on it.
I’ve had a wheelchair since childhood.
It has grown with me my whole life.
To see the piece inspired by this poem, go to the Hygienic Art Gallery, 79 Bank Street, New London, CT. The show runs January 28th, at 8pm to February 11th until 6pm. You can check-out Hygenic Art at http://hygienic.org for a list of all events.
Aloha UCP!
On Friday, January 13th, staff and clients of UCP's Old Saybrook branch enjoyed a hula lesson. Helen, sister of Richard Rogers (a member of Old Saybrook's day program), visited from California. Helen brought leis and taught everyone some hula moves. A good time was had by all who participated! UCP would like to thank Helen for her time, sharing her talent, and brightening our day. Thank you Helen!
Girl with Autism Expresses Amazing Intelligence
The story of 14 year-old Carly is an inspiration. Carly was diagnosed with severe Autism and does not speak, but that does not mean she is not there. Many people assume people with disabilities who cannot speak are unintelligent. The story of Carly serves as an eye opener and leads us to question many of our previous assumptions. Through the use of a computer, Carly learned to communicate and what she has to say is astounding. In this video, she shares her explicit experience with Autism and her message to the world. A must see for all!
Help for Parents of Children with Developmental Delays and/or Disabilities
Did you know UCP has a website for parents with children who have developmental delays and/or disabilities? My Child Without Limits is a place where parents can learn about developmental milestones, get information on diverse disabilities, look-up resources to plan for the future, and join in an online social networking community with other parents. Even more exciting, UCP just recently launched the site in Spanish!
To learn more, please see the below news release from UCP National announcing the launch on My Child Without Limits:
FOR IMMEDIATE RELEASE:
Contact: Lauren Cozzi
(202) 973-7114
To Download this press release: Click Here
United Cerebral Palsy Presents Online Resource for Parents of Young Children with Developmental Delays
MyChildWithoutLimits.org Helps Families Plan, Understand & Act
Washington, D.C. (September 23, 2009) - United Cerebral Palsy (UCP), today announced the launch of My Child Without Limits (MyChildWithoutLimits.org), UCP's pioneering initiative that provides parents of children with disabilities an online resource with critical information that also connects parents to a vital social network of parents of newly diagnosed children ages 0 to 5.
The first realization that your child is going to face the many challenges and obstacles encountered by those who live with a developmental delay or disability can be a lonely, frightening and confusing time. Many parents who have been assisted by UCP have reported that finding the organization and receiving the information and advice our affiliates provide has been a very significant turning point for them.
My Child Without Limits is a place for parents worried that their child is not developing like other children, to find answers to their questions. It is a place where parents know they are not alone after their child has been diagnosed with a developmental delay or disability. The authoritative site and online community are designed to be resources for families and their caregivers and professionals.
The Web site provides access to accurate, user-friendly and relevant disability-related information, resource guides, and experts on early intervention and family support in three basic areas:
- Understand - Help families answer the questions: What are Autism Spectrum Disorder, Cerebral Palsy and Down Syndrome?
- Plan - Provide guidance about where to go for early intervention services, treatments and therapies, assistive technologies, and expert direction and advice.
- Act - Direct parents and caregivers to where they can explore issues surrounding disability awareness, advocacy and lifespan planning.
The community section of My Child Without Limits also offers a venue for parents to communicate with each other, ask questions of professionals and service providers, and receive support through the critical period of initial diagnosis.
"I can't think of a better way to reach parents of children with disabilities who are so desperately seeking credible information they can trust," said Stephen Bennett, President & CEO, United Cerebral Palsy, Inc. "My Child Without Limits will be the one-stop shop for parents and professionals, and help children with disabilities start achieving a life without limits at an early age."
About United Cerebral Palsy
United Cerebral Palsy (UCP) was founded over 60 years ago by parents of children with cerebral palsy. Today UCP is a leading service provider for adults and children with disabilities. UCP's services reach over 176,000 adults and children every day through a network of over 100 affiliates in the United States, Canada, Scotland and Australia. The UCP National office, located in Washington DC, provides assistance to affiliates through marketing and communication services, programmatic support and an annual conference. UCP National also serves people with disabilities and their families through public policy and advocacy, the development of forward-thinking programs and the Life Without Limits initiative.
How to Get an iPad for your Child with a Disability
This week, Chloe Mason-Mann became the second recipient of an iPad from UCP's Bellows Fund and Disability Support Program. Chloe is a three year-old girl with Down Syndrome who is non-verbal. Chloe shows promise that the iPad may be a good match as an augmentative communication device, as she already communicates using sign language and has a rather broad vocabulary. The hope is that the iPad will open-up a whole new world for Chloe -one where she can fully communicate with her family and peers. Congratulations Chloe!
The iPad has changed the lives of many people with disabilities. It has opened doors to communication that for years were closed. Communication is key to the human experience; when cut-off, many children and adults become frustrated, isolated, and depressed. The iPad is starting to turn that around and offer hope. It should also be noted that iPads have been used to help children with diverse disabilities develop other skills as well, such as social skills, learning about cause and effect, developing fine and gross motor skills, behavior modification, skills in adaptive behavior, reading, writing, spelling, math, etc.
Though the iPad is showing much promise, it can be difficult to acquire one for a child with disabilities. Here are some tips to try and get an iPad:
1.) Contact your insurance company first. Though not all insurances cover iPads, some may if you can make the case that it's a cost-effective augmentative communication device. For instance, a DynaVox would cost them several thousand dollars, while an iPad would cost $500-$700+ (depending on features and if you also request they cover some Apps). For further reference, please read itaalk.org/fundingsources/medicalinsurancecoverage.html.
2.) Ask your child's school to cover one. The challenge is your child may be provided with one only at school or if allowed to take home, it may be the sole property of the school district and have to be returned at some point. Since school districts vary greatly, it is important not to jump to any conclusions about what your school will do and work with them directly. For further reference, please read http://blog.friendshipcircle.org/2011/03/31/6-steps-to-get-the-ipad-into-your-childs-special-education-classroom/.
3.) Have a fundraiser. You can ask friends and family to donate through Facebook, Twitter, and emails by using FundRazr http://fundrazr.com/ . You can also use chipin http://www.chipin.com/ or GiveForward http://www.giveforward.com/.
4.) Apply for a giveaway. Realizing the many benefits of iPads for children with disabilities, many programs have been popping-up throughout the country to give them away. Try:
http://differentizgood.org/gift-a-voice/
www.babieswithipads.blogspot.com
5.) Apply for a grant. Some non-profit agencies and foundations may provide a grant to help your child get an iPad, just as UCP did for Chloe. Some grants to check-out:
https://applications.cerner.com/firsthand/
http://maggiewelby.org/Grants.html
http://differentizgood.org/gift-a-voice/
http://conovercompany.com/grants/
http://www.smallstepsinspeech.org/
http://www.parkerspurpose.net/
6.) Apply for a loan. The CT Tech Act offers an assistive technology loan program and provides loans ranging from $500-$30,000 for a diverse array of assistive technology devices. To learn more, visit: http://www.cttechact.com/loan/
7.) Borrow an iPad. Southern Connecticut State University's Center for Adaptive Technology loans iPads (and computers) to all Connecticut schools for up to four months (can be renewed after that point in some cases). This may be a good option to see if an iPad is an appropriate device for your child before purchasing one. To learn more, go to: http://www.cttechact.com/device_loan/computer.php
Good Luck! For more resources on funding for iPads, please see http://itaalk.org/fundingsources.html from which this article was adapted.
UCP’s Disability Support Program is funded by:
United Way
Chelsea Groton Foundation
Community Foundation of Eastern Connecticut
Eastern Federal Bank Foundation
People’s United Community Foundation
RS Gernon Trust
UCP fundraisers and individual contributions
Thank you!
UCP Celebrates the Holidays
Clients and staff at UCP have participated in a number of festivities to celebrate the holiday season. In Old Saybrook, clients and staff had a blast playing "Just Dance," "Wii" and "American Idol." They also shared plenty of food and laughs. In Quaker Hill, clients and staff enjoyed holiday parties and held a craft sale. The crafts were made by clients and staff and the $130.50 generated from the sale went towards a family in need who has a child with a disability to help make their season bright. In our residential program in Groton, clients and staff will be baking Christmas cookies, enjoying a holiday breakfast on Christmas Eve, and will be hosting a New Year's dinner on New Year's Day. We wish everyone a very happy holiday season and wonderful New Year!
Motorized Wheelchair Giveaway
Phil Pavone, owner of A-Z Pawn in Norwich, has been generously giving away motorized wheelchairs and scooters to those who need them. Last summer, he gave away six and last Saturday, December 10th, he gave away 10 more. He plans to give an additional 10 away before Christmas. To apply for a chair, applicants must write a letter stating their need and how the chair will help them in the future. Also include information about the height and weight of the person needing the chair and any other necessary accommodations so an appropriate chair can be matched if available. Applications can be faxed to (860) 859-9129. Please call (860) 889-4474 in advance to alert A-Z Pawn that the application is being faxed. More information can be found at A-Z Pawn's website, including a story Channel 3 News covered about the giveaway: http://www.azpawn.net/Gift_Of_Mobility.html
Organization Changes
From the desk of Margaret Morrison, Executive Director:
UCP is pleased to announce the promotion of Denise Henry to Associate Executive Director of Operations. Denise started with UCP as Director of Residential Services in 2006. Over the last 5 years she has implemented many quality control measures that have led to the consistent delivery of excellent services to the clients in the program. Among them, Denise developed a comprehensive training program for her management team; developed UCP’s first Client handbook; and implemented Therap in her program. Denise has also taken on increasingly more responsibility including PRC, DDS Leadership meetings, DDS advisory committee, as well as revenue-generating activities such as expanding the expanding the Fee-For-Service billing and providing Behavior Consultation services to other providers.
In addition to the Residential program, Denise will now oversee the UCP Day Programs in Quaker Hill and Old Saybrook. Christine Olbrys, will remain Director of the Day Programs and also will be working collaboratively with Denise in the Residential Program.
Steve Smigiel has been an important part of UCP of over 20 years. As the Financial Manager, Steve has provided the Executive Directors and Board members the accurate financial information required for them to make sound business decisions. In additional to payroll and financial reporting, Steve will now be responsible for leading the UCP Board in the Finance Committee.
At this time, UCP would also like to announce the promotion of Jennifer Keatley to Associate Executive Director of Administration. Jennifer started with UCP as the Human Resource Manager in 2006. Over the last 5 years, Jennifer’s HR responsibilities have expanded to include Risk Management, Fundraising and various committee work. In her new role, Jennifer will be overseeing UCP’s administrative functions as well as Staff Development.
UCP High Rollers
On Saturday, November 12th, UCP's disability support group, a group of the Disability Support Program, enjoyed an afternoon living the high life at Big Night Entertainment Group's High Rollers bowling alley located in Foxwoods Resort and Casino. Big Night Entertainment Group was generous enough to donate two hours of bowling, as well as bowling shoes, to our group. High Rollers provides a luxury experience where bowlers lounge on comfy couches and are waited on by a personal waitress while they play using state of the art bowling technology. Each alley has a wide-screen TV just above the pins where bowlers may watch sports and music videos. The alley is also lit by several chandeliers providing for an extravagant, once in a lifetime experience.
UCP and its clients and staff would like to thank Big Night Entertainment Group for their generous donation to our support group members. All who participated in High Rollers bowling are appreciative of your support and had a fabulous time. It is an experience we will all remember and cherish for years to come. Thank you for supporting your community and helping people with disabilities enjoy full citizenship and participation. Your contribution is much appreciated and will always be thankfully remembered.
UCP’s Disability Support Program is funded by:
United Way
Chelsea Groton Foundation
Community Foundation of Eastern Connecticut
Eastern Federal Bank Foundation
People’s United Community Foundation
RS Gernon Trust
UCP fundraisers and individual contributions
Thank you!
UCP Staff Make a World of Difference
UCP of Eastern Connecticut celebrated our staff this week with our "World of Difference" appreciation activities at our day programs in Quaker Hill and Old Saybrook and residential program in Groton. Each day, staff were surprised with a different theme and treat. On Monday, we celebrated how "Our Staff Float Above the Rest" by serving-up root beer floats. Tuesday, staff were treated with breakfast. Wednesday, they enjoyed apple pie, ice cream, and cider to honor them as being, "An Important Piece of the UCP Pie." On Thursday, we enjoyed a "Thanks"giving lunch of turkey sandwiches. Staff were also given a shirt that says, "I Make a Word of Difference" with an image of the world on the back. On Friday, everyone received a customized candy bar with their name on it.
UCP would not be able to fulfill our mission to advance the independence and full citizenship of people with disabilities if it weren't for our dedicated, talented, and caring staff. Each day you come to work, you make the lives of people with disabilities better. You really do "Make a World of Difference" and are appreciated.
Old Saybrook Celebrates Renovations
On October 20, 2011 UCP of Eastern Connecticut hosted an Open House to celebrate our completely renovated Old Saybrook Day Program.
UCP Annual Meeting -Farewell Pat, Congratulations Elizabeth!
On Monday, October 24th UCP of Eastern Connecticut held our Annual Meeting at Quaker Hill. It was a time to honor staff, clients, board members, and community supporters, as well as highlight the agency's accomplishments throughout the year. Among one of our major accomplishments was the complete renovation of our Old Saybrook Day Program where we hosted a recent open house on October 20th.
Pictured above is Elizabeth Kelly, the recipient of this year's Nathaniel Bennett Award. The Nathaniel Bennett Award is given each year at our annual meeting to an individual with a disability living in New London County who serves as a significant role model to individuals with or without a disability. Elizabeth always has a smile for everyone she meets, is very organized, and has always been a fierce advocate for herself in her life. She has worked at Stop & Shop and most recently found a new job at Puffin's. She is active and conscientious of her health. She currently works out at the gym and has even tackled Zumba classes! Religion is also important to Elizabeth and she will be starting confirmation classes at St. Agnes Church soon. To sum-up Elizabeth's personality, "She decides what she wants and then makes it happen!" The day Elizabeth received her award was also her 31st Birthday. The Southeastern Connecticut region is lucky to have such an upbeat, integral individual like Elizabeth Kelly living in our community!
We also had a "surprise" celebration honoring Pat Mansfield's retirement at our meeting. Pat, our current Co-Executive Director, will be retiring on November 4th after 10 years of service. For the past 25 years, Pat has served in other community provider agencies, with DDS, and CCPA. Co-workers who had the privilege of working with Pat in the past spoke of their experiences and congratulated Pat on her retirement. Pat will be greatly missed at UCP. The contributions she has made to make UCP a solid agency providing vital services to promote independence and full citizenship for people with disabilities will live on far into the future.
UCP Participates in the 34th Annual Jack 'O'Keefe Memorial Strides Road Race
On Sunday, October 2nd, the Arc of New London County and the Cactus Jack Foundation hosted the 34th Annual Jack O'Keefe Memorial Strides Road Race at Camp Harkness in Waterford. The race is one of the longest running road races in Southeastern Connecticut and was established in 1978 to benefit people with disabilities. People from all walks of life participate in the race, regardless of whether or not they have a disability. UCP's Cindy Harrington, along with Paul Malloy and David Adams from our residential program, were among the race's participants. Pictured above is Paul Malloy and the trophy he earned from the race. Way to go Paul, David, and Cindy!
iPad Helps Children with Disabilities Have a Voice
Pictured is Michelle Bussolotti, Disability Support Coordinator for UCP of Eastern Connecticut with five-year-old Sam.
Sam is a five-year-old boy with Down Syndrome and Verbal Apraxia. Children with Verbal Apraxia have challenges with preparing and producing highly refined movements of the lips, tongue, jaws, and palate necessary for precise language and children with Down Syndrome usually learn best visually, making the iPad a perfect educational tool. The iPad was integrated into Sam's therapy at school, where he was able to communicate with peers and come-out with words on his own. At home, his family was using sign language, but really wanted to continue Sam's iPad therapy out of school. Sam's Mother was able to get an iPad for Sam with the help of UCP's Disability Support Program and Bellows Fund.
The iPad was never intended to help children with disabilities, but awareness of its usefulness for this purpose has skyrocketed in recent years. The iPad has been used in therapy with children and adults with a spectrum of disabilities, including sensory, developmental, and acquired. Applications can be purchased (and in some cases are offered free) to help people with disabilities communicate or develop skills. Sam uses Alt-Chat software to communicate, for example. The iPad truly gives a voice to those who have disabilities and helps them to develop one of their own.
For more information on Apps available for people with diverse disabilities, please visit:
http://www.sccoe.k12.ca.us/programs/inclusion-collaborative/docs/Iphone_Ipod_Ipad.pdf
UCP’s Disability Support Program is funded by:
United Way
Chelsea Groton Foundation
Community Foundation of Eastern Connecticut
Eastern Federal Bank Foundation
People’s United Community Foundation
RS Gernon Trust
UCP fundraisers and individual contributions
Thank you!
Old Saybrook Open House
On Thursday, October 20th from 3:30-6:00pm, UCP will be hosting an open house at our Old Saybrook location. Last March, we completed renovations and welcome all to see our new look! Light refreshments will be served. We are located at 590 Boston Post Road in Old Saybrook. Please RSVP by October 12th to (860) 443-3800 x26.
Dance, Dance, Dance!
UCP would like to welcome Shannon Quinn as part of our team! Shannon is a Freshmen at Connecticut College majoring in Dance. She will be volunteering in Quaker Hill's Day Program helping clients learn some moves. She will also be involved in other fun activities and helping the people in our program get out into the community. Shannon hopes to fuse her two passions -dance and working with people who have disabilities- into a future career. She would eventually like to help children with disabilities flourish through dance and hopes volunteering at UCP will serve as a stepping stone. We are excited to have Shannon liven-up the Day Program with her warm personality, music, and moves. Welcome Shannon!
Volunteers are made possible through UCP's Disability Support Program. To inquire about volunteering or if you are a person with a disability who would like to find a volunteer opportunity in the community, please contact Michelle Bussolotti, Disability Support Coordinator at (860) 443-3800 x11 or mbussolotti@ucpect.org.
UCP’s Disability Support Program is funded by:
United Way
Chelsea Groton Foundation
Community Foundation of Eastern Connecticut
Eastern Federal Bank Foundation
People’s United Community Foundation
RS Gernon Trust
UCP fundraisers and individual contributions
Thank you!
Welcome George!
Pictured: George Reid-Perry, Associate Director of Residential Services and Denise Henry, Director of Residential Services
UCP of Eastern Connecticut welcomes a new staff member! George Reid-Perry became a part of our team on Monday, September 12th as the new Associate Director of Residential Services. George comes to UCP with a Bachelors Degree in Psychology from Western New England College, has received certification in Therapeutic Crisis Intervention, and is pursuing a degree in ASL/English interpretation. George's work experience includes several years experience in the Social Service field, most recently as a Group Home Program Supervisor for Community Health Resources where he and his team provided supports to adolescent teens. George will be working out of the Groton SLA office located at La Triumph apartment complex to ensure people with disabilities live independently in their own homes with the support of UCP staff. Welcome George!