LOCAL EVENTS, EDUCATION, NEWS and ADVOCACY
Lots of exciting stuff on the way sponsored by DSACNJ. A talk with Trisomy 21 expert Dr. Mary Pipan, Rock Your Socks Off, and young child playgroup.
Register For Rock your Socks Off by February 15 for guaranteed Socks!
As you all know, DSACNJ is a nonprofit organization which strives to provide support, education, advocacy and enrichment opportunities to people with Down Syndrome and their loved ones. Nearly all of the events we provide throughout the year are free of charge to all our members. Please help us continue to provide the services we offer and expand our services as intended. Invite your friends, families, therapist, teachers, coaches and Join us at our annual fundraiser which also happens to be our biggest and best event of the year in celebration of World Down Syndrome Day!
Saturday March 12, 2016 Come Celebrate our 2nd Annual ROCK YOUR SOCKS OFF Dance Party and Fundraiser at the Cranbury Inn (see details below).
IF YOU ARE PART OF OR HAVE CONNECTIONS WITH A BUSINESS WHICH MAY WISH TO SPONSOR OUR WOLD DOWN SYNDROME DAY EVENT PLEASE LET US KNOW SO THAT WE CAN FOWARD YOU A SPONSORSHIP FORM.
You can also help support the Down Syndrome Association of Central New Jersey by adding our group to your amazonsmile shopping settings on https://smile.amazon.com/.
FACEBOOK GROUP STARTED
Please join our group
REGISTER FOR ROCK YOUR SOCKS OFF 2016
ROCK YOUR SOCKS OFF DANCE-OFF CELEBRATING WORLD DOWN SYNDROME DAY
Saturday, March 12th, 1-4pm
21 South Main Street
THIS DANCE PROVIDES INDIVIDUALS WITH DOWN SYNDROME THE OPPORTUNITY TO CELEBRATE THEIR ACHIEVEMENTS WITHIN THEIR DAILY LIVES AND IN OUR COMMUNITIES.
INVITE AND BRING YOUR FRIENDS, NEIGHBORS, RELATIVES, THERAPISTS, CLASSMATES, TEACHERS AND COACHES.
DJ BRETT GASH and NJ 101.5 PRIZE VAN WILL LEAD THE PARTY. FOOD AND REFRESHMENTS WILL BE SERVED.
EXCITING SILENT AUCTION WITH GREAT PRIZES INCLUDING DISNEY THEME PARK PASSES, GREAT WOLF LODGE STAY, AMERICAN DOLL, PHILADELPHIA ZOO PASSES, JETS MEMORABILIA< NY GIANTS MEMORABILIA, AND MANY MORE!
INDIVIDUALS WITH DOWN SYNDROME ARE FREE. DANCERS 3 AND YOUNGER ARE FREE.
$21.00 FOR ALL OTHERS.
DO YOU KNOW A BUSINESS THAT MAY WANT TO SPONSOR US? PLEASE BE AN ADVOCATE FOR US AND EMAIL FOR FUNDRAISING FLYERS FOR THE EVENT. WE CAN USE YOUR HELP FINDING SPONSORS!
Can't Attend? Register as a virtual dancer to receive a t-shirt
QUESTION AND ANSWERS SESSION WITH TRISOMY 21 EXPERT, DR. MARY PIPAN
Wednesday, April 27th, 7-9pm
to be determined
Join us for this educational presentation and get your questions answered.
Location to be announced likely SONJ
Get all your questions answered such as behavioral expectations and interventions, toilet training, nutrition, routine care, anticipation for development, transitioning to adult based health care preparation, and any others.
Please RSVP to email@example.com if interested in attending.
YOUNG CHILD PLAYGROUP AT MOTION GYMNASTICS
TODDLER AND YOUNG CHILDREN INVITED
This playgroup takes place on Tuesday afternoons from 3:15 to 4:15pm.
Location: Motion Gymnastics55 Rte 31 South, Building C
Pennington Business Park
Pennington, NJ 08534'
RSVP to firstname.lastname@example.org
There is also an option for starting a separate group for little ones on wednesday morning from 9-10 - please let me know if interested.
UPDATES AND A LOOK AHEAD
What We've Been up to
In the past month DSACNJ has been busy planning for Rock Your Socks Off. We also have been working to improve relationships with medical professionals and have met with Children's Specialized Hospital Primary Care start up team to discuss collaborating and improving patient referral to support organizations.
We have also applied for a Global Down Syndrome Foundation Self-Advocate Employment Grant which would allow us to hire and pay a self-advocate for serving with our board on medical advocacy campaigns and event planning. We will keep you updated on the outcome of this grant application.
We have been in contact with the Governor's office regarding World Down Syndrome Day and have received a second annual Proclamation declaring March 21st Down Syndrome Day in the state of New Jersey. This proclamation will be presented to us at Rock Your Socks Off. We have also received confirmation from the GOvernor's office that they will light up Drumthwaket in blue lights again for March 21st and will be requesting all states to light up their state capitol building in recognition.
We have also been in contact with the media and will have NJ 101.5 at our Rock Your Socks Off event!
Currently in the works are planning for the following. We will update you will details in the near future!
Plans for future educational events?
Financial Planning for children with Special Needs
Question and Answer Forum with Down Syndrome Expert - planned for April 27th
Mindfulness and Stress Reduction for Caregivers
Plans for Social gatherings?
Moms Night out
Dads Night Out
Teen Night Out
CHILDRENS SPCIALIZED HOSPITAL OPENING A PRIMARY CARE LOCATION IN HAMILTON
CHILDRENS SPECIALIZED WILL BE BRINGING SPECIAL NEEDS CARE CLOSER TO HOME
Children’s Specialized Hospital is expanding to offer pediatric primary care at our Hamilton location. We will provide family-centered care for children with special healthcare needs and their siblings. Our team includes doctors, care coordinators, social workers, therapists, nurses and staff members who are prepared to care for children who need extra resources to meet their needs.
In this practice, we help children and families navigate and understand the complex health and school systems. Our doctors are experienced in caring for children with a variety of special needs, including Down Syndrome. We understand that children with Down Syndrome have unique needs. Our team is prepared to provide the supports and services to meet the needs of your child and family. We follow the specialized health care guidelines for children with Down Syndrome and will work together with you to help your child reach their full potential. Our care coordinators help make sure children get the medicines, services and equipment they need. The care coordinators and social workers help advocate for our patient’s medical, educational, and behavioral health needs.
Ultimately, the goal of our practice is to provide much needed, comprehensive care, in a unique way, to children with special healthcare needs and their families.
For more information or to schedule an intake appointment, please call (609) 631-2811 and our manager or care coordinator will assist you. You can also visit our new location at 3575 Quakerbridge Road, Hamilton, NJ 08619 or online at www.childrens-specialized.org/pediatricprimarycare.
IN THE NEWS
ABLE ACT APPROVED IN NJ: New Bill Signed into law
The ABLE Act allows individuals to utilize a tax-free, state-based private savings account for the care of disabled beneficiaries, similar to a 529 plan for education expenses. The ABLE account can be used to supplement government benefits for certain expenses while not disqualifying such individual from government benefits. Similar to 529 plans, income earned by the accounts will not be taxed. Distributions can only be made for “qualified disability expenses.” This term has yet to be defined and may differ from state to state.
The funds in the ABLE account do not count toward the $2,000 cap on assets that is required to remain eligible for critical government supports. An ABLE account may fund a variety of essential expenses for individuals with disabilities including medical and dental care, education, community based supports, employment training, assistive technology, housing and transportation.
- See more at: http://www.ndss.org/Advocacy/ABLE-Act/#sthash.BGi1i3nJ.dpuf
New Dietary Guidelines for Americans Released
The recommendations for healthful eating encourages diets rich in vegetables, fruit, whole grains, lean meats, legumes, and nuts. Seafood is highlighted for providing vital nutrients, such as omega-3s and vitamin D, which are important for both mom and baby’s health. Babies of moms who eat plenty of seafood during pregnancy have improved brain development. For the health benefits for all ages, everyone should eat a minimum of 2-3 meals (or 8-12 ounces) of a variety of seafood each week.
On the Medical Advocacy Front
Reaching out to the medical community
We plan to attend a regional obstetric conference in the spring to spread the word. We also plan to do a mailing of information packets including the guidelines on the delivery of diagnosis, support information, information about options such as adoption, and a First call Program information sheet to all obstetric Hospitals in the state as well as obstetric groups. The First Call program is a release form that physicians can have the patient sign to allow us to call them and support them at the vulnerable time following the receipt of the diagnosis. We hope this effort will improve new parents early integration into a support group where they can receive the most accurate information about what they can expect with regards to raising a child with Down Syndrome.
Our message is critical especially with the widespread availability of non-invasive prenatal testing for trisomy 21. The Down Syndrome Association has received a grant to focus on these efforts.
ADDED PERK FOR OUR MEMBERS
Discount to Great Wolf Lodge for DSACNJ members
Just in time for the winter holiday season DSACNJ has a special offer from Great WolfLodge. 20% off lowest rates for all our members. Use the Corporate Code: DOWN086A
You can book online athttp://www.greatwolf.com/poconos or by calling 800-768-WOLF(9653).
Upon check-in if requested a copy of our newsletter is sufficient for proof of membership.
Disabilities Allies Events
Technology, Casrtooning, Kids Team Builder, Bowling and Mountaineer Day approaching
Microsoft Technology Career Workshop (Ages 15 and older)
Saturday 2/20/16 at 1pm
You must register for the Microsoft Technology Career Workshop. If you are interested in being a mentor or participant by following the link below. You can also follow the link to find out more information. (*Important- If you are trying to register on a work computer or on a cellphone the registration may be blocked. Please try registering from a computer in your home.)
The Microsoft Technology Workshop will take place on Feb 20th from 1pm to 3:30pm at the Microsoft Store at the Bridgewater Commons Mall and is for young adults.
The address of the event is 400 Commons Way
Bridgewater, NJ 08807. The event is completely accessible. You can park at the mall.
View the flier for the Technology Workshop here
The event will be co-organized by Disability Allies and Microsoft.
Cartoon Creation Event (Ages 15 and older)
Sunday 2/28/16 at 3pm
You must register for the Cartoon Creation Event. If you are interested in being a mentor or participant by following the link below. You can also follow the link to find out more information. (*Important- If you are trying to register on a work computer or on a cellphone the registration may be blocked. Please try registering from a computer in your home.)
The Cartoon Creation Event will take place on Feb 28th at 3pm at the Microsoft Store at the Bridgewater Commons Mall and is for ages 10 to 35 years old.
The address of the event is 400 Commons Way
Bridgewater, NJ 08807. The event is completely accessible. You can park at the mall.
View the flier for the Cartoon Workshop here
This event will be co-organized by Microsoft, Disability Allies, Asberger’s Friends and WallynZavy’s Autistic Kids Can Do!
Bowling Team Builders
You must register for our Bowling Team Builder's event if you are interested in being a mentor or participant by following the link below. Register for one or both!! You can also follow the links to find out more information. (*Important- If you are trying to register on a work computer or on a cellphone the registration may be blocked. Please try registering from a computer in your home.)
Bowling Team Builders will take place at 2pm at Majestic Lanes Bowling Alley and is for young adults. The address of the event is 525 Us Highway 9 N, Hopelawn, NJ 08861-1551. Hopelawn is just south of Woodbridge. Meet us at the party room when you arrive. The event is completely accessible. You can park at the Bowling Alley for Free.
Team Builders for kids (ages 6 and up - Also looking for Young Adult Mentors)
You must register for Team Builders for Kids if you are interested in being a mentor or a participant by following the link below. You can also follow the link to find out more information. (*Important- If you are trying to register on a work computer or on a cellphone the registration may be blocked. Please try registering from a computer in your home.)
The program will last for five sessions. You don’t have to sign up for all the sessions if you don’t want to. It will occur on the 2nd and 4th Sunday of the month. The Dates are February 14th, February 28th, March 13th, March 27th and April 10th
There are three different programs depending on your age group
1. 6-8 years old will meet from 10:30am to 11:30am
2. 9-11 years old will meet from 11:30am to 12:30pm
3. 12-15 years old will meet from 12:30pm to 1:30pm
We are also looking for young adult mentors aged 16 and over.
We will be meeting at the front of the East Brunswick Jewish Center. The address of the event is 615 George Street New Brunswick, NJ 08901-1176. We have an indoor facility that we will be doing out events in.
The purpose of this program is to help children with their social skills and engage them in teambuilding activities. Each child will be paired with a mentor.
View the flier for Kids Team Builders here
Mountaineers Day (Ages 15 and older)
Mountaineers Care Day will take place on Friday, May 6th 2016 from 11:30am to 2pm at West Orange High School. The address of the event is 51 Conforti Ave, West Orange, NJ 07052. The event is completely accessible. You can park at the high School for free. We will still be having our mentoring panel it will start 1:30pm.
You must register for Mountaineers Care Day by following the link below. You also must register for our mentoring panel. You can also follow the link to find out more information.
You can view the flier for Mountaineers Care Day Here
If anyone is having difficulty finding our events feel free to call me at 908-616-5091. Both of our events are completely accessible.
Mountaineers Care Day https://www.dropbox.com/s/1mmmng5yh82uvj0/Public%20Flier.jpg?dl=0
Upcoming Events at Sensational Kids
Starting Monday, February 1st
3-6 year olds: Mondays 4:30-5:30pm
Is your child struggling to make or keep friends? Our social skills play groups are lots of fun. Children love our sensory-motor gym and learn to make friends during cooperative projects, sensory activities, board games and music. Sessions improve the ability to perform as part of a group, share, take turns, attend and learning to cope with challenges and disappointment. Children learn how to be a friend as well as make friends, control impulses and handle frustration. We provide weekly parent carry-over and consult with parents on managing behavior at home.
Tween Social Skills Group
Starting Monday, February 1st
7-15 year olds: Mondays 6:00-7:00pm
This social skills group is different from others because it will have a focus on developing socials skills essential for the tween aged child preparing to enter the middle school or high school world. This group is for kids who typically have difficulty making friends or reading social cues. It will incorporate technology that appeals to the 10-14 year old age group such as the Wii, iPad and social media sites, which have become part of daily social interactions amongst this age group. Lessons will be interactive, child-directed and differentiated to the needs of all group members. Themes will incorporate trending topics and interests of this peer group and will be developed through child and parent insight and feedback. Home recommendations will be made after each week.
Be sure to like us on Facebook for therapist tips and Sensational Kids events
Join us for our 6 week or 4 week summer camp program. Click on the link above for more information!
We have some new workshops in March and April. Click on the link above for dates and workshop topics.
All Groups Are One Hour A Week for 10 Weeks
Both of the Social Skills Groups are run by Jessica Johnstone.
She is a board certified Behavior Analyst, BCBA
For Enrollment, Call the Office at 856-810-5777 or
SPECIAL FRIENDS DAY AT RUTGERS
Special Friends Day 2016 for guests 14-22 years
Sunday March 6, 2016
Cook/Douglass Recreation Center
50 Biel Road, New Brunswick NJ
For questions contact: email@example.com
THE MEALTIME JOURNEY
Michelle Davis-Korngut, MS OTR/L and Meghan Quan, an experienced feeding therapist from Pediatric Therapy Solutions, LLC will be co-hosting a parent series titled
"The Mealtime Journey"
Thursday, Feb 11, 2016 7-8PM: Toddler Mealtime
Thursday, March 10, 2016 7-8PM: Anxious Mealtimes
Does your child…
- · refuse to eat or drink?
- have poor weight gain?
- eat a limited variety of food?
- avoid certain food groups or unable to transition from foods of different textures?
- display disruptive mealtime behaviors?
- have foods they once loved to eat, but refuses them now?
- have difficulty chewing and/or swallowing different food?
- refuse nipple and/or gags with insertion of bottle?
- gag, cough, or vomit while eating?
- depend on nasogastric or gastrostomy tube feedings?
If you answered YES to any of these questions, your child may benefit from feeding therapy and this lecture series.
SPACE IS LIMITED SO CALL OR EMAIL TO RESERVE A SPOT
LECTURES $10 EACH or $30 for the series
For more information contact Michelle Davis-Korngut, MS OTR/L
Pediatric Therapy Solutions, LLC
...Helping Kids Help Themselves
3131 Princeton PikeBuilding 4 Suite 100
Lawrenceville, NJ 08648
Like us on: Facebook
Need Help Managing Your Child's Behavior?
This seven-week parent workshop was developed by the pediatric psychologists at Children's Specialized Hospital to help parents learn how to manage their child's behavior. The course will be led by instructor, Shoshana Isenberg, Ph.D. and will discuss:
- Causes of misbehavior
- Setting limits. Dealing with tantrums.
- Managing sibling conflicts
- Developing and implement behavioral systems.
- Parent stress management, self-care and support system
This seminar teaches effective behavior management strategies for parents of children with challenging behavior. Facilitators will introduce parents to an engaging and interactive curriculum which includes education on how to analyze causes of misbehavior, and to use this information to develop appropriate discipline strategies. The primary focus is on limit-setting, effective ways to handle tantrums, creating behavioral incentive systems that really work, and managing sibling conflicts. Parents will gain confidence in their ability to manage stress and to cope with parenting challenges. While these tools are appropriate for parenting all kinds of challenging children, they are especially applicable for working with children who have been diagnosed with ADHD or Oppositional Defiant Disorder.
Sessions will meet on Wednesday evenings over the course of a seven week period: February 24 - April 6 (none 3/23) with a follow up session June 8
Each weekly session is from 7:00 p.m. – 8:30 p.m.
Children’s Specialized Hospital
150 New Providence Road, Mountainside, Auditorium A
Registration and prepayment is required. The cost for the entire seven week series is $99. Qualifying families can receive up to 100% of this fee by applying for the Children's Specialized Hospital Benefit Fund.
Child care is not available. To register, click on the registration button below or call: Dr. Shoshana Isenberg (908) 389-5679.
Location: Children's Specialized Hospital, 150 New Providence Road, Mountainside, NJ
Contact Phone: 908-389-5679
SEEKING BOARD MEMBERS
Interested in serving on our board?
SEEKING self advocates for our board
Teens and adults with Down Syndrome and Emerging Leadership Skills See below
email firstname.lastname@example.org if interested.
THANK YOU TO OUR SPONSORS OF ROCK YOUR SOCKS OFF
Other great organizations with ongoing opportunities
DOWN SYNDROME ASSOCIATION OF CENTRAL NEW JERSEY
The Down Syndrome Association of Central New Jersey (DSACNJ) is a non-profit parent support group, established to assist families of children and adults with Down Syndrome as a point of contact, support, up to date information and fun and enriching social gatherings. We celebrate the lives of our children and encourage them to reach their full potential.