Winter Newsletter - January...

Winter Issue — January 2006 Volume 11, Issue 1I

Quarterly Newsletter

BUDS Events & Thank you Sue!

2

BUDS Buddy Walk

3, 4&5

Inclusion (by Norma Pezza)

6-7

Other Events 9

Transition Planning at the JCC

10

Parents Night Out by CPofNJ

11

List of Area Events (provided by SPAN) & KIIDS Workshop

12 & 13

Things to do and Scholarships by NDSS

8

Inside this issue:

From Your Treasurer – Nancy Hennefer Halloween and St. Patty’s parties, golf, etc. Many of us have known each other since our children were babies, and we’re now see-ing them being “included” in high school, seeking job training, going to proms, and achieving other truly remarkable milestones. Whether you have young children, teens or young adults, BUDS has so much to offer for every age group. However, we are a volunteer organization and rely solely on our BUDS families to make things happen. Whether it is the golf outing, the Buddy Walk, Special Olympics athletic teams, new parent outreach, or young adult social events, we are always looking for volunteers to get involved. We welcome your ideas and encourage each and every one of you to come to our planning meetings, social events, or even just drop us an e-mail if you have an idea that you would like to share. If you would like more information on any of the BUDS programs, feel free to contact me at [email protected] or 856-354-0584. Sincerely, Nancy Hennefer

I’m Nancy Hennefer and I’m the Treasurer for BUDS. My husband Bob and our two children Bobby (age 21) and Brad (16) have been involved with the BUDS organiza-tion for over 16 years in various capacities. I used to edit the newsletter, help with new parent out-reach and spent several years organizing many social events for the younger children. In addi-tion, my husband is actively involved with the BUDS golf outing, Buddy Walk and Special Olym-pics. We have made a lot of friends over the years and have stayed in close touch with many of the BUDS families that we met when Brad was first born.

We have fond memories of the old Easter egg hunts, hayrides and holiday parties. However, now that several of our BUDS families have children in their teen and young adult years, their social needs have changed. Therefore, my husband and I, along with several other families, have spent the last couple of years expanding programs for the teens and young adults. We started a Special Olympics of New Jersey basketball team comprised entirely of young adults who have Down Syndrome. We now have social activities each month for the young adults including movie nights, karaoke, bowling,

Brad Hennefer Kudos! & List of Events

14


Did you miss the Wrightslaw Conference last

year? You are in luck! The conference will be held in

Philadelphia, PA on August 15, 2006. Check

www.wrightslaw.com for up

coming details.

If you know of a

member with

Down syndrome

that has been

hospitalized or

is going to the

hospital, please

contact us at

856-985-5885.

Adult Pot Luck Dinner — Annual Pot Luck Dinner will be held at the William’s home in Voorhees on Saturday, February 25th at 7pm. Please RSVP for directions and a food assignment by February 18th to Maria and Paul at 856-768-3441. Hope to see you there!

Discovery Museum - On Saturday, February 11th BUDS will be at the Discovery Museum at 2040 Springdale Road in Cherry Hill from 2:30pm to 5pm. The party is limited to the first twenty chil-dren who register, per the museums regula-tions. The group will

be in the party room for the first hour and in the museum for the last hour and a half (all children must have an adult with them). Snacks will be provided. Please RSVP to Sue Orthey at 856-751-7421 by February 5th.

Here’s What’s Happening…..

a great deal of effort into getting the public to view and accept ALL people, especially people with Down syndrome. This was Sue’s last year as chairperson for our Buddy Walk. Sue had the follow-ing to say: “I would like to thank all the individuals who have helped make the Buddy Walk successful all these years. Buddy Walk 2005 marked our 10th anniversary, and after 10 gratifying years of chairing the event, I have decided to turn over the reigns and be a part of the crowd. For me, the Buddy Walk was always about rais-ing awareness and participa-tion in the lives of our chil-dren. It was so heartwarming and humbling to watch the Buddy Walk grow from 72 participants our first year, to

Many of you know that Sue Schuitema has been the chairperson of our Buddy Walk for the last ten years. Sue started our Buddy Walk with NDSS the very first year they began the program. She has made the Buddy Walk for BUDS grow into the largely attended event that it has become today! If you’ve ever worked on the Buddy Walk committee with Sue, you know that she has poured her heart and soul into the Buddy Walk every single year. She strives for perfection and works very hard to make this event special for all the BUDs families and supporters. Sue has al-ways said that she wanted the Buddy Walk to be about awareness, not about money. She tirelessly put

over 1,500! The committee for Buddy Walk 2006 (along with its new co-chairs Lin and Michael Rubright) has al-ready begun planning. I’m sure there will be some excit-ing and refreshing new ideas and activities for us all to en-joy. Thank you everyone for all your care and support over the years. I am honored to have been a part of this truly rewarding experience, and to have worked with so many amazing people. I am looking forward to enjoying the day from a spectator’s viewpoint this year!”

THANK YOU SUE!!

With a Heavy Heart But Much Thanks!

Volume 11, Issue 1I

Fall Buddy Walk - HUGE SUCCESS

returned from the walk to enjoy the activities and fun set up by volun-teers. Kids ran through the area jumping on slides or getting a tour of the fire truck, while parents supervised kids or participated in the silent basket auction. Vendor tables lined the walk for parents to obtain more information about programs or items for people with Down syndrome. A fun time was had by all and we thank the Buddy Walk Committee for all their hard work. The Buddy Walk raised approximately $15,000 for BUDS programs.

The tenth annual Buddy Walk was a huge success thanks to the enormous number of BUDS families and supporters who came out and walked with us in Washington Lake Park! Approximately 1,600 people came out to help support our friends who have Down syndrome in the park on October 2nd, 2005. Many people came out with their family and friends to enjoy the one mile walk around the park and a day of eating, dancing and playing. The entertainment from Rocket DJ Productions was new this year and kids and families

enjoyed dancing to all the different varieties of

music. Energetic sounds and the aroma of hoagies and

hot dogs filled the amphitheater as families

YOUR HELP IS NEEDED!

Please consider

becoming part of the Buddy Walk Committee! It is a great group to

work with and the rewards are even greater! Please contact Lin or

Michael Rubright if you are

interested at buds.newsletter@

comcast.net The committee is starting back up

soon to plan Buddy Walk 2006!

Sue Schuitema would like to thank ALL of the committee members and prize solicitors for all their hard work making our Tenth Anniversary of the BUDS

Buddy Walk the best ever!

Mark the date! The 11th

annual BUDS Buddy Walk will be

held on Sunday,

October 1, 2006!


Photos from BUDS Tenth Anniversary Buddy Walk!!

Food: WaWa,

Murphy’s Markets, Dunkin Donuts, Einstein Brothers

Bagels, Don’s Bagels and

Economy Ice

Jen McKeown and Samatha Conolly help kick off the walk with our

favorite MC ~ Chick Pinto

Volunteers Henny Schuitema, Bill Lessig and Jane Conolly ready the hot dog stand for

the hungry walkers!

Rocket DJ Productions

got the music going and the

people dancing!

Approximately 1,600 people returned from the walk hungry and ready for some fun!

Please patronize the following Buddy Walk sponsors/supporters!

Coorporate Sponsors: Wal*Mart Sam’s Clubs

Archie’s Plumbing Certified Steel Chick Fil A KPMG

Cleaning Solutions SBAR’S Inc Popular Financial Holdings The Rodriguez Family

Willingboro Fraternal Order of Police Bank of America

Volume 11, Issue 1I

And this year’s cup goes to.. The Placente Family - Team Sean

(aka King Tut). Family and friends of Sean raised over $2,000.00 for the BUDS Buddy Walk! The Placente

Family also won the Best Team Theme for their King Tut theme.

Largest team awards were tied with The McKeany Family - “Seany’s Walkers” and The DelSignore Family - Mardi Gras theme. The Most Creative Team went to the “Priceless”

Theme (sorry we are missing the family name). The Raymour & Flanigan Gift Cards were won by Dorothy Hahn.

Photos from BUDS Tenth Anniversary Buddy Walk!!

Washington Lake Park was filled with

Buddies (left), while Anna Rubright’s Girl

Scout troop came out to support their favorite

“Buddy” (right). And who didn’t know that

the Schuitema men, Henny and Henry, have always been “Buddies”? (bottom left) Sponsor-ship signs line the walk as it ends back at the

ampitheater. (bottom right)

An ENORMOUS Thank You to all of the people who

volunteered at the Buddy Walk! Many, many people helped to make the day a

success! We couldn’t have done it without you!

Are you ready to make the Buddy Walk 2006 a great day for all? Next year’s committee wants YOU!! Our

next Buddy Walk will be on Sunday, October 1st, 2006! The committee is forming now and needs your

help!! Whether you have a little time, or a lot, we could use your help for a task! Please email Lin

Rubright at [email protected] to join the 2006 Buddy Walk Committee or volunteer on the day

of the Buddy Walk!

Inclusion: Not a Matter of "Can't" But More a Question of "How?" By Norma Pezza

Would you ask a child who is blind to read an assignment off the chalkboard knowing she can't see? Then why present a child who finds language difficult to process a worksheet full of words? (Don't think "can't"...........) If you present the child who is blind the assignment in braille then she can read it. If you present the second child a simplified worksheet now he can learn. (.....instead ask "how?") From the moment Benjamin was born, I decided that we would address his needs as life goes on. Whenever I see him with typical children, it's the similarities that I see. The differences don't stand out because in my mind All children have differences. At the same time, I'm realistic about how he learns. I realize he needs more support to learn compared to his typical friends. But we don't allow that to stand in the way of his being included in a regular education classroom. When the idea of inclusion came about, the benefits outweighed the concerns for us. Benefits in-cluded having peers using language all around him, since he wasn't talking yet, and also age-appropriate social models. We wanted him to see how children his age were expected to behave. He would also be challenged by the curriculum in a regular education classroom. Some parents asked, "Aren't you afraid he'll get frustrated? Why put him through that?" The idea isn't to place him in a regular education classroom and just expect him to learn. Inclusion involves a process of deciding what supports, adaptations or modifications he'll need to facilitate learning. (Don't think "can't" instead ask "how?") It also requires some flexibility. Benjamin doesn't spend his entire day in his classroom. Some time is spent in the resource room to address subjects that are more challenging for him and require smaller group instruction. And even in the smaller setting, modifications are necessary. Other times in the week are spent with his speech therapist, OT, or PT. But even with modifications, sometimes he still gets frustrated. Sometimes typical children get frustrated when learning new material. I feel it's a life skill to learn how to cope with frustration. It's a life skill to say, "I need more help", and to keep trying. How many people would ride bikes or roller skate today if they stopped after their first fall? Another question is, "Why have him sit through a lesson that he might not understand?" First of all, maybe he will understand. But it also reminds me of my first experience with children with spe-cial needs in a gym class. The teacher had set up an obstacle course and many of the children could-n't complete it without a great deal of help. Being inexperienced, I asked her, "What's the point if they obviously couldn't do it?" Her answer has stayed with me all these years. "Because you never know what they'll take in; what spark in them you might ignite. Sure the first time is hard because they've never done it before, but maybe the next time it'll be easier. Children need to be exposed to many experiences because you never know what they might learn, and unless you increase their experiences, you'll never find out." Baskin Robbins doesn't have 31 flavors for nothing. There's more to life than chocolate and vanilla. Along with frustration is the question of how will a child's confidence be affected if he sees his limi-tations when comparing himself to his friends? First, I don't feel that children are born with the idea of limitations. I think it's taught. And I hesitate to use the word limitations because sometimes it's not the child's disability (which is a given) that limits him but rather how the work is presented. Go back to the child who is blind. Don't think "can't" instead ask "how?". And I feel Benjamin gains more confidence as time goes on because he sees that he can overcome challenges, and that trying does pay off.


Another concern parents have asked me about is "Aren't you afraid the other kids will tease him? I don't know that I could stand that." Being around children, I've come to discover that unfortunately teasing is a part of life. And so I can either shelter him forever so it never occurs, or I can teach him to be strong, stand up for himself, and be proud of who he is. In his 5 1/2 years of schooling, all in regular education classrooms, teasing has yet to come up as a concern. What I've found is that his classmates see him as "Benjamin". He is who he is, and that's who they've come to accept as one of them. Sure, no parent can stand seeing their child being teased, but that's an obstacle we need to over-come as parents and not allow our children to get blocked by it. If I didn't allow my children to try things because I was afraid, their lives would be so limited! They wouldn't ride a bike for fear they might fall. They wouldn't learn to swim for fear they might drown in the process. They wouldn't play sports for fear they would break a bone. Don't think "can't" instead ask "how?" In this case, how can I get over my own fears to allow my child to flourish? Don't think "can't" instead ask "how?". I hope this phrase in some way changes how we view inclusion. Hey, if we teach it to our kids it teaches them a very positive way to face any challenge in life! Every school should have a banner with this phrase hanging over their main entrance. Every teacher should have it hanging in their classroom. How can you go wrong living by these six little words? Norma Pezza [email protected]

Ben with his older brother at the BUDS Buddy Walk 2005!

Inclusion: Not a Matter of "Can't" But More a Question of "How?" By Norma Pezza

Volume 11, Issue 1I

ment Fund will offer financial assistance to young adults with Down syndrome who wish to continue to enrich their lives by participating in postsecondary education programs or enrichment courses to obtain gain employment and other important life skills contributing to their independence.

The fund will award five (5) grants of up to $1,000 to individuals with Down syndrome who wish to enroll in a postsecondary education program or an enrichment course at their local community college or other educational institution. We encourage all individuals who meet the eligibility criteria to apply for this grant. The

applicants must meet the following eligibility criteria: individuals with Down syndrome who are 18 years old or older; and intend to enroll in a postsecondary education program or enrichment class that will enrich their life, through employment, independent living skills, life skills or another way. Completed application packages must be returned to NDSS by May 1, 2006. The grants will be awarded no later than July 15, 2006. If there are any questions, please feel free to contact Erin Geller at [email protected].

(For a scholarship applications please go to the NDSS website at www.ndss.org)

NDSS is excited to announce the second year of The Joshua O'Neill and Zeshan Tabani Enrichment Fund. This fund was established in January 2005 by Zeshan Tabani to honor his friend, Joshua O'Neill. Joshua was fortunate to partici-pate in a postsecondary education experience and he benefited greatly from this opportunity. Financial aid for post-secondary education is rarely available to individuals with Down syndrome, and while many young adults want to continue to enrich their lives through further education after high school, they frequently do not have the financial means to do so. The Joshua O'Neill and Zeshan Tabani Enrich-

Teen and Young Adult

Group

If you haven’t attended an

event or sent in your registration

form to be included on the Teen & Young

Adult mailing list, you can still do so by emailing

threehens @aol.com or calling

Nancy Hennefer at

(856) 354-0584.

All In A Days Play, LLC all ages. All groups are matched based on age and abilities and typically develop-ing peer models are included in most groups. It is our be-lief that children can have fun and make friends while develop-ing new skills.

Classes are forming now. For more infor-mation contact Mary Kientz, MS, OTR, at 856-262-1625 or check out their website at www.allinadaysplay. org.

All in a Days Play, LLC, is a therapeutic play center that offers occupational therapy, speech therapy, and developmentally based play (i.e. floortime/DIR) to indi-viduals as well as play/social skill groups for children of

To have future BUDS

Newsletters emailed to you in PDF format

instead of traditional hard-

copy mailing, please email Lin

Rubright at [email protected] with the email

address to which you wish your

future Newslet-ters sent.

Thank you. New Postsecondary Scholarship Opportunity!

Volume 11, Issue 1I

BUDS has been finding ways to cut administrative costs to better serve families! The group will no longer mail postcards for all events. Instead a calendar of events will be enclosed in every newslet-ter and we will be sending out notices via email. This will tremendously cut down on our biggest admin-istrative cost - printing and postage! We will then be able to funnel that money into more programs for BUDS families instead. Please consider signing up to receive your newsletters and notices via email! You can do so by contacting Lin Rubright at [email protected]. It’s easy and handy for everyone! No more paper lying around the house looking for a home and you can add your favorite dates and activities right to your electronic calendar while you read them on your computer! This will also afford us to send out better quality and easier to read newsletters as we get more and more families signed up. Don’t have a computer yet ~ don’t worry, BUDS is still going to mail the newsletter out to families who would like them! Please take a moment to email Lin Rubright with your email address so that we may better serve you! Thanks!

Technology Moves Us Forward

one day symposium will provide both the parent and health-care provider with up to date clini-cal information and therapeutic approaches on select topics applicable to individuals with Trisomy 21. Some

Children’s Hospital of Philadelphia is holding a Trisomy 21 Workshop on Saturday, March 11th, 2006 at the hospital. This

of the sessions include • Adolescent Issues • Speech Apraxia • Physical Therapy • Care Notebook • Education • Down Syndrome/

Alzheimer Connection You can register for the workshop online at www.cme.chop.edu

CHOP Trisomy 21 Symposium

Here’s What’s Going On In Other Groups…..

KIIDS is a Down syn-drome

group that services new babies and younger children and their families in the southern NJ area. For more info check out www.kiids.info.

AFFIE needs your help! Please check the website for our toner collection program! We are holding a drive in February and March to collect empty toner cartridges. Money raised will support our children’s tutoring program. www.affie.org

21 Down is a Down syndrome group that services Cape May, Atlantic and Southern Ocean Counties. For more information you can check out this group at www.21down.org.

Attending a conference

regarding your family member

with Down syndrome?

Please remember

that conference fees and transportation costs to the confer-ence can be paid by

BUDS. You must submit an application

prior to the conference and be

approved. The conference does not have to be advertised through BUDS. If you find a conference that deals with disability

issues, you may submit the application to us. Call the BUDS phone number if you need the application form (856-985-5885).

Email Lin Rubright at buds.newsletter @comcast.net to receive your

newsletter via email!

Volume 11, Issue 1I

To have future BUDS Newsletters emailed to you in PDF format instead of traditional hard-copy mailing, please email Lin Rubright at

[email protected] with the email address to which you wish your future Newsletters sent.

Thank you.


Bereavement support group for families who have experienced the loss of a baby or a young child; Third Wednesday of every month, 10-12, at NJ Dental School, 110 Bergen Street, Room B 839, Newark. Contact Jan Hader, LSW, 800-545-7437, or Gladys Martinez, LSW, 973-972-5458.

JANUARY 2006 January 30, 5:00-9:15 pm, Frist Campus Center, Princeton University. Princeton Community Works holds an excellent and inexpensive program day each year. The cost is $27 per person. You can pick and attend two workshops and dinner is included. Workshops are Conflict resolution within groups; effective internal communications; volunteer management; taking the fear out of public speaking; cost effective marketing strategies; dealing with difficult people; fundraising strategies comprehensive overview; press releases basics; strategic planning; dynamic leadership tools for achieving and evaluating success; increasing effec-tiveness through partnerships; better fundraising letters; innovative teen programs; how to run an effec-tive meeting; toolkit for accounting; building an effective board; your web site; and how to network and get something out of it.

FEBRUARY 2006

February 6, 7-8:30 pm, Don Imus-WFAN Pediatric Center for Tomorrow’s Children, Room PC241, Hacken-sack University Medical Center, Increasing Independence in your Child with Autism. Presented by Alpine Learning Group. Info at http://www.alpinelearninggroup.org/index.html.

MARCH 2006 March 8-9, Portland Marriott Downtown Waterfront. National Conference on Post-School Outcomes for Youth With Disabilities. Check out www.psocenter.org. March 13, 7-8:30 pm, Don Imus-WFAN Pediatric Center for Tomorrow’s Children, Room PC241, Hacken-sack University Medical Center, Improving Social Skills of your Child with Autism. Presented by Alpine Learning Group. Info at http://www.alpinelearninggroup.org/index.html. March 19-21, Historic Mills House, Charleston, SC. Accommodating Students with Disabilities on state Assessments: What Works?, Sponsored by the College Board, National Institute for Urban School Im-provement, Council for Exceptional Children, and Educational Testing Service. March 26-29, Chicago, Family Support America’s 11th Biennial International Conference. For more infor-mation, go to www.familysupportamerica.org or 312-338-0900.

APRIL 2006 April 7-8, Ramada National Conference Center, East Windsor, 8:30-4. Advocacy for Children is not a Spectator Sport! Annual Conference of the Statewide Parent Advocacy Network. Go to www.spannj.org for more information.

APRIL 2006

April 24, 7-8:30 pm, Don Imus-WFAN Pediatric Center for Tomorrow’s Children, Room PC241, Hackensack University Medical Center, Making the Most of Play Time for your Child with Autism. Alpine Learning Group. Info at http://www.alpinelearninggroup.org/index.html. April 28, 29, 30, May 1, 2006: Washington, DC Metro Area, Infancy and Early Childhood Training Course. Taught by Stanley I. Greenspan, M.D. and Serena Wieder, Ph.D. Brochure and registration materials avail-able in January, 2006. For more information call 301-320-6360 or visit http://www.stanleygreenspan.com/.

MAY 2006 May 6, 8:30-4, Ramada National Conference Center, East Windsor. Annual Conference of the NJ Inclusive Child Care Project. Contact Denise Bouyer at 973-642-8100 x 112 or go to www.spannj.org for more infor-mation. May 8, 7-8:30 pm, Don Imus-WFAN Pediatric Center for Tomorrow’s Children, Room PC241, Hackensack University Medical Center, Autism and Sibling Relations. Presented by Alpine Learning Group. Info at http://www.alpinelearninggroup.org/index.html.

JUNE 2006 June 28-29, Montgomery High School (near Princeton), Summer Inclusion Conference 2006” The Keys to Inclusion: Unlocking the Doors for Children with Mild to Significant Disabilities, NJ Coalition for Inclusive Education. Contact 732-613-0400 or [email protected].

THIS LIST PROVIDED COURTESY OF SPAN - ACTIVITIES ARE NOT ALL SPAN ACTIVITIES

Volume 11, Issue 1I

K.I.I.D.S. (Knowledge and Information about Individuals w/ Down Syndrome)

Presents

Seminar Topic:

Addressing the Concerns of Siblings in a Special Needs Family

Date: February 16, 2006 Time: 7pm to 9pm

Location: Gloucester County Board of Education Building 1492 Tanyard Rd. Sewell, NJ

RSVP to Julie Fishburn at (856)467-0164 by February 13, 2006

Directions: www.co.gloucester.nj.us/government/departments/education/directions.htm

The seminar is free and open to all parents of special needs children Refreshments will be provided

* Inclement weather date February 23, 2006*

P.O. Box 1085 Marlton, NJ 08053

Phone: 856-985-5885 Fax: 609-714-8564

Email: buds.newsletter@

comcast.net

We’re on the web! www.budssj.org

The information contained in this newsletter is provided as information for our readers, and is not necessarily the opinion

of the editor, or endorsed by the support group.

To have future BUDS N

ewsletters

emailed to you in PDF format in

-

stead of traditional h

ard-copy

mailing, p

lease email Lin Rubrigh

t

at buds.newsletter@

comcast.net

with the email address t

o which

you wish your future Newsletters

sent. Thank you.

BUDS UPCOMING EVENTS

February 11th – Trip to Discovery Museum in Cherry Hill

February 25th – Adult Potluck Dinner - Williams’ home

Postcards will NO

longer be mailed for

each event - please

mark your calendar!

BUDS (and the Hennefer Family) are very proud of Brad Hennefer for winning the

Gold at the Special Olympics Golf Games! Keep up the great work Brad!

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