Notes from the Field
the 2nd annual run, walk & roll newsletter

and TelAbility updates

June 2010

In This Issue

Letter from Josh Alexander, MD

A Parent's Perspective

5K Winners

Something for Everybody

Employment Opportunities

run, walk & roll Slide Show

View Pictures from the 2nd annual run, walk & roll

A Thoughtful Moment...

"On May 1st, 2010 I was able to volunteer for the Run, Walk & Roll. I have been a rehabilitation nurse for over 3 years. It was truly a blessing to see the smiles and hear the laughter of these special children. Volunteers and sponsors worked together to make it a memorable day for all. To many it may seem like a small feat, but to these children crossing that finish line was such a huge accomplishment. I will volunteer again, not for me, but for the children."
Susan Carter, RN, CRRN

May thanks to our 2010 Run, Walk & Roll Sponsors

GOLD
Bio-Tech Prostethics & Orthotics
Carolina Mobility & Seating, Inc.
Martin & Jones PLCC
State Farm Insurance Agents- Mike Pratapas and Bruce Adorian
Triangle Medical Spouse Alliance
UNC Healthcare

SILVER
Abilitations Children's Therapy and Wellness Center
Cary Pediatrics
Medical Technolgies of Georgia
Pediatric Therapy Associates
Tandberg

BRONZE
Advanced Seating and Mobility
Developmental Therapy Associates
Dynamic Therapy For Kids
Easter Seals UCP North Carolina
Research Triangle Park
Wilmington Medical Supply

IN-KIND SERVICES
Across The Pond DJ Service
double exposure photography
Fleet Feet Sports of Raleigh
Great Harvest Bread Co.
Instant Imprints
pfotographics graphic design
Wake County/Crowder District Park

Dear Run, Walk, and Rollers,

I really didn't mind knowing that I was about to be dunked in a tub of cold water. Really. As I sat on the dunking booth's narrow blue board, I looked out at the people in the crowd facing me and smiled. It had been a wonderful day. Earlier that morning, I had arrived at beautiful Crowder District Park with my two yawning children in tow to find that, even as the sun was rising on a new day, 20-30 volunteers had already begun the process of setting up tables, chairs and tents, and preparing the food and drinks that would be greedily consumed by the hundreds of walkers and runners participating in our 2nd Annual Run, Walk and Roll.

For those of you who don't know, the Run, Walk and Roll (RWR) came about as a way to raise funds for the UNC Pediatric Rehabilitation programs, including TelAbility. The idea of holding a 5K Run as a fundraiser sprang from the story of Nathan Baker, a cross country runner at Green Hope High School who also happens to have cerebral palsy (and hearing impairment, and an Eagle Scout badge and...).

The first Run, Walk and Roll, held in May 2009, was an adventure for many of us who didn't know what we had gotten ourselves into. Despite being put together over just a few months, it was an unqualified success with one child with special needs reporting, "This was the best day of my life!"

With the experience and the lessons learned from that first year the 2nd RWR planning committee and organizers were able to make this year's event even better. (See the "Look How We've Grown" article for specific details.)

But back to the dunk booth - People had paid $5 for three chances to throw a softball at a metal target that, when hit, would send me, as one child put it, to my "ice-y doom (insert evil laugh here)". The best part of the dunk booth? It wasn't the fact that it had been a hot day and I was ready for some cool relief. It wasn't that it helped raise funds for our programs. The best part of the dunk booth (and probably the best part of my day) was watching the faces of all the children (some in wheelchairs, some standing in braces, some on their parents shoulders) in the crowd just waiting for the first attempt to hit the target.

We sometimes think that because they have a disabled body it means that these children will have a disabled mind (a big misconception) and we sometimes view children with disabilities as purely angelic (though they can be), but I'm here to tell you that the very best part of my day was the sight of the many mischievous faces of my patients just waiting to see their doctor go down, and the smiles on their faces the moment that narrow blue board fell out from under me and I got dunked.

I don't know if we'll have a dunking booth at next year's event, but I do know that the 3rd Annual Run, Walk and Roll will surely involve more people, include more vendors, and produce many more special moments for us and for our children.

Hope to see you there, Josh Alexander

Some of the Day's Winners

Top Fundraising Teams
1st Place: Team Tristan Rock Star (The Pack and Dew Families)
2nd Place: Hope for Lakelann (The Bennett Family)
3rd Place: Johnny's Angels (The Atkins Family)
The top three teams brought in over $12K

Largest Teams                                                   Most Creative Teams
1st Place:   SB Racers                                    1st Place:   Cameron's Crazies
2nd Place:   Pediatric Therapy Assoc.     2nd Place:   SB Racers

Click here to view the 5k race results and winners! Congratulations to all our first-third place winners and everyone who trained and crossed the finish line!

A Parent's Perspective by Joe Dew (Bryson's Dad!)

"As parents there are two things that attract us to participate in the Run, Walk & Roll", says Joe Dew, parent of Bryson Dew (pictured here).

To find out what they are click here and then click the article link, "A Parent's Perspective on the Run, Walk & Roll".

Something for Everybody by Anna Troutman, Wake County SmartStart

The Wake County LICC Community Resource Fair, held in conjunction with the 2nd Annual Run, Walk & Roll, was a tremendous success again this year! Representatives from 44 community agencies provided information about critical resources to other providers and families. One service provider commented, " I've been involved in early intervention for years in this community, and I learned about many new resources for the families I serve." The informal, relaxed setting and the interactive activities encouraged families to stroll comfortably around the large circle of tables, engaging vendors in conversations specific to the needs of their children. "I will definitely be giving you a call on Monday," a mom of a young child remarked, "we've been searching for this type of spoon for months."

The Run, Walk & Roll: Two Years and Counting

TelAbility/WATCH Recognition Awards

Several local and statewide agencies and WATCH Members were recognized at the 2nd Annual Run, Walk & Roll for their commitment and support of the TelAbility and WATCH Programs. With gratitude and appreciation we would like to thank the following agencies and individuals:

For their funding and programmatic support:

The John Rex Endowment
Wake County Smart Start
The Wake County Local Interagency Coordinating Council
Anna Troutman

For their technological support:
MCNC/NC Ren

For their involvement in several videoclinics and consults:
Abilitations Children's Therapy and Wellness Center
Pediatric Therapy Associates
The Wilmington Children's Developmental Services Agency

For their involvement in several WATCH videoconference sessions and opening their conference room up to outside agencies for use in professional development sessions:
Community Partnerships, Inc.
The Tammy Lynn Center for Developmental Disabilities
The Raleigh Children's Development Services Agency

For their help in coordinating several videoconference sessions:
Kathi Gillaspy, former Director of Early Intervention Services at Community Partnerships, Inc.
Annette Pridgen, The Raleigh CDSA
Julie Rockefeller, Speech Language Pathologist, The Tammy Lynn Center for Developmental Disabilities
Libby Rogers, Regional Physical Therapy Consultant

For outstanding and extraordinary volunteer support:

The Atkins Family

Lil Baker

Renee Johnson

Jennifer Pfaltzgraff
Val Wilson

The Power of Parents... by Jennifer Pfaltzgraff (Ethan's mom)

Thank you to all of the parents who joined us at the 2nd annual run, walk & roll. For so many of us, it was a way to (re)connect with other parents of children with special needs, while enjoying a day of fun. It was also an amazing demonstration of parents working to make their child's life better. By supporting the run, walk & roll, we continue to fund programs our children use and need.
So let's keep the momentum going. Can you make your contribution go further by offering a few hours a month? We are seeing budgets and programs shrink and waiting lists form. Changes in the school system, Medicaid, and more will affect every child with special needs. It will take our generation of parents to step up and take action.

One way to stay involved is to start at the beginning so to speak. Children, birth-5, with special needs go through early intervention. During that stage, they are given tools and supports to succeed. TelAbility partners with the Wake County Local Inter-Agency Coordinating Council (LICC) to help promote a successful early intervention system in Wake County.

This is much more than just a meeting we are asking you to attend. We need parent input to help the agencies and organizations that form the Early Intervention community to strive to make the system work for children and their families.

If you would like to become more involved, visit www.wakelicc.org or call 919-843-0427.

Update on The Erikson Series

With financial support from Wake County Smart Start, TelAbility has collaborated with the Wake County Young Children's Mental Health Collaborative and The Erikson Institute in Chicago over the past five months to provide a four session educational series offered via videoconference.The first three sessions, held in February and April, were attended by 52 early intervention service providers from Wake County.Each session focused on different aspects of meeting the social/ emotional needs of very young children.The final session, held on Friday, June 11 focused on the development of functional outcomes and the Primary Provider Service Delivery Model.

Each session has been very well received. Participants have commented on the cost effectiveness of the series and the ability to learn from and share with other early intervention providers in a different part of the United States. We would like to thank the Raleigh CDSA for allowing us to use their conference room for each session, The Erikson Institute for agreeing to participate in this new technological and education venture, and Nora Roehm for helping to make the initial contact with The Erikson Institute. This learning model has been an excellent example of how providers across the state and nation can effectively collaborate and leverage resources to enhance the lives of children with disabilities.

WATCH Question of the Month:

Question: I am working with an 18 month old patient with some feeding/nutritional needs. Does anyone have any suggestions for high fat/calorie wholesome and nutritional foods for this child to try?

Answers:
1. Click here to access the handout "Pass the Calories". It was prepared by a pediatric RD and includes several suggestions on ways to increase the caloric density of the foods that a child will eat. -Josh Alexander, MD

2. Try nut butters, flax, olive oil, eggs, salmon and the avocados. MCT oil is flavorless and can be added to yogurt, pudding, milk, etc. and it's pure fat calories which are easily digestible.- Julia Simmons, Parent/CAP-C Program Director.

3. We use Duocal- a powder you can add to almost anything that adds fat and carbs. It's not inexpensive- but it works. It adds no flavor. Also- we add heavy cream or canola/olive oil (just a tsp. or to just about everything we serve our son who has cerebral palsy. -Jennifer Pfaltzgraff, Parent.

4. We've had great success with a product from Nestle called BeneCalorie. I make smoothies with it and I can honestly say that it's the only thing that has helped my daughter gain weight on a consistent basis. Nestle also has a number of products under their Boost line that come in all sorts of calorie/protein variations. They even have a pediatric line of nutritional drinks. BeneCalorie is quite pricey and I've only been able to get it direct from the Nestle website; however, Nestle is pretty good about giving discounts and coupons. -Teresa Egly, Parent

MAKING A GIFT TO TELABILITY
The Run, Walk & Roll is a wonderful event that helps to educate the community about the special needs community and the services of TelAbility, as well as celebrate the amazing accomplishments of the children, families and providers who care for them. It also helps raise money to support and sustain the many services of the TelAbility program that are designed to improve access to health care, quality of life, and independence for our patience and their families.
With our funding from the John Rex Endowment ending on June 30th of this year, we depend upon your private gifts and donations more than ever. In order to continue programming at our current level and consider expansion of services to other counties across North Carolina we need to raise another $70,000. Please consider making a tax deductible gift to TelAbility. You can send a check made payable to the UNC Department of Physical Medicine and Rehabilitation to TelAbility, 1101 Weaver Dairy Road, Suite 202, Chapel Hill, NC 27514. Please put TelAbility on the memo line. Credit card donations can be made by calling Juliellen at 919.843.0427.

Thank you for making a gift that will help us continue to help children with special needs grow up to be as happy, healthy and independent as possible.

Community Events and Resources

2010 Ride for Tammy Lynn Center

Ride for Tammy Lynn Center is a full and half metric century bicycle ride to raise awareness and funding for Tammy Lynn Center for Developmental Disabilities.

Date:
Saturday, June 26, 2010
Distances:
100 K (62.4 miles) or 50 K (31.2 miles)
Location:
Centennial Campus (near Capability Drive)
Registration Fees: $30 (until noon on June 25) $35 (day of)

www.ridefortammylynn.org Online registration is now open.

ABILITATIONS CHILDREN'S THERAPY SUMMER CAMP

Music Matters is a group for children ages 7-10, that incorporates a variety of musical activities such as instrument playing, singing, and body movement. These activities are designed to help participants practice important life skills such as turn-taking, attending, following directions, building vocabulary, reinforcing basic academic concepts, and enhancing creativity. Participants will have the opportunity to play a variety of instruments including drums, tambourines, maracas, claves, and many more! We will also be having some fun with scarves, streamers, and a parachute! FOR INFORMATION/TO REGISTER, PLEASE CALL (919)844-6611.

Session 1: June 22nd-July 15th Session 2: July 27th-August 19th

Sessions meet 2x/week Tuesdays & Thursdays 1:30-2:30

Classes run by a certified music therapist. Cost: $75

Location: Sanctury UMC at Lakewood, 2317 Chapel Hill Rd, Durham, NC 27707

Early Steps Preschool
Pediatric Therapy Associates is offering a preschool readiness class for children ages 18 months -3 years old who are interested in starting preschool. This small group will help children learn skills needed to succeed in a preschool setting such as: circle time, imaginative play, music and movement, art and sensory activities, socialization through play, following routines, structured table activities and toilet readiness.
Classes will be Fridays 9:30-10:30 am and 10:30-11:30 am at our Raleigh Location
For more information call919-854-0404or info@pedtherapy.com

First Journeys Developmental Therapy will be holding Social Language groups this summer at the Wake Forest Location on Mondays from 10-12 and at the Fuquay-Varina location on Tuesdays from 10-12. Focus is on playing with and talking to friends, communicating wants and needs, and introducing by name. For ages 2-5 years old. Please call Jean at 637-5201 or visit our web site at www.firstjourneys.org for more information.

Employment Opportunities

Position Title: Educational Coordinator

Location: Raleigh

Position Classification: Part-time, hourly

Compensation: Competitive, commensurate with experience

Qualifications: BK certification required

Responsibilities: 4-star inclusive non-profit center seeks Birth-Kindergarten certified teacher to work in a developmental day preschool. PT position (20-30 hours per week). Duties include working with WCPSS case managers as liaison in writing and implementing Individualized Education Plans. Knowledge of Exceptional Children's policies and procedures, excellent organization, documentation and communication skills required. Extensive experience in working with children 1-5 yrs with autism required.

Contact: Submit letter of interest and current resume to Pam Ray; Fax: 919-773-1044 or pam.ray@nc.eastersealsucp.com

No phone calls, please. Qualified candidates will be contacted by the Director.