Join Hand to Hold for a monthly Lunch & Learn program – Informal presentations and discussions on a variety of topics relevant to the care of your preemie, special needs child, family and yourself. We invite different speakers to discuss a range of topics, answer your questions and give you ideas that you can use to advocate for your child, yourself and your family. Have a topic or a speaker to recommend? Send your ideas to Amy Carr.

Upcoming Talks

Caring for Older Siblings – Tuesday, April 30, 2013

From  10:30 to 11:30 am CT on Hand to Hold’s Facebook wall

Join us as Child Life Specialist Julie May from Dell Children’s Medical Center shares resources and answers your questions about caring for older siblings during and after a child’s NICU or subsequent hospital stay. Join us on Facebook as we share stories, resources, and much more.  If you have questions concerning this topic and will not be able to join us for the web chat, you can email your questions to Amy Carr, amy [at] handtohold [dot] org or post them to our FB Wall.

About Julie May: Julie May is a Child Life Specialist at Dell Children’s Medical Center in Austin, Texas. She was previously a Child Life Specialist for Our Children’s House, which is part of the Baylor Health Care System in the DFW area. Julie is a busy mother of three and a graduate of the University of Texas at Austin.

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PAST TALKS & RESOURCES

Empowering the Cerebral Palsy Parent, Thursday March 21, 2013

Hand to Hold held a Facebook Chat from 1:00 to 2:00 pm CT on Hand to Hold’s Facebook wall where Dr. Mary Elizabeth Parker answers parents’ CP-related questions. Many families that start life in the NICU have a long road ahead with countless specialists, therapies, and diagnosis.  For a lot of these families Cerebral Palsy is one (possibly of many) diagnosis. See the archived chat and resources that were shared.

About Dr. Mary Elizabeth Parker: Dr. Parker graduated from Duke University in 1991 with a double major in biological psychology and physical anthropology. She completed her Master’s degree in physical therapy in 1995 at the Medical College of Virginia. Her doctoral work in differential diagnosis was completed in 2012 at Texas Woman’s University. Dr. Parker is a clinical assistant professor at Texas State University where she teaches neuroanatomy and pediatric physical therapy. She is licensed to practice physical therapy in Texas and Connecticut. She continues to have an active research agenda in movement disorders in autism with her colleagues in the northeast from SUNY, Sacred Heart, and Fairfield University. She also has research interests in Rett syndrome, mitochondrial disorders, and differential diagnosis. She has received a certificate in Advanced Pediatric Therapy from Texas Woman’s University in 2004, followed by board specialization in both pediatric and neurologic physical therapy from American Board of Physical Therapy Specialists. Her dual certification in pediatrics and neurology is unique in the profession.

She is an item writer both for the national PT and PTA exams and the pediatric specialist exam.

Her passion for the undiagnosed is channeled through this work and her role as medical liaison for U.R. Our Hope, a locally-based, but national group that assists individuals with undiagnosed and rare disorders at any age or any stage.

Caring for Your Emotional Health Before, During and After a NICU Stay- Monday October 29, 2012

Dawn K. Gibson, LCSW of Mindful Mothering discussed tips, information and strategies you can use to care for yourself during your pregnancy, NICU stay and long beyond. Learn about symptoms of PPD, anxiety, depression and PTSD. Learn what to watch for and get your questions answered so you have what you need to thrive in the midst of challenging times.

Early Childhood Education Seminars

MORE FREE WORKSHOPS The Region 13 Educational Service Center in Austin offers workshops and conferences for parents and professionals alike.

Here are some upcoming educational workshops you may be interested in:

• Improving Early Childhood Outcomes on November 13, 2012
• Handwriting Without Tears:Get Set for School™ Pre-K Readiness on December 11, 2012

If you are interested in attending any of these email Erika [at] handtohold [dot] org

Making the Transition from ECI: Finding the Right Preschool Setting for Your Child – Friday, August 24, 2012

Parents and families found out how to make the transition from ECI and how to find the right preschool setting for their children.  This event was held from  10:00 to 11:30am at Easter Seals Central Texas Early Childhood Intervention Center and answered the following questions:

• Has your child been receiving Early Childhood Intervention Services?
• Are you wondering what will happen when they turn three?
• Or is your child older than three and you think they could benefit from preschool services for children with disabilities?
• What should you do, if your child doesn’t qualify for PPCD?

Early Childhood Education Conference

On Tuesday, July 24 and Wednesday, July 25, 2012. Hand to Hold parents attended the Early Childhood Education & Beat the Heat Conference 2012 at the Region 13 Educational Service Center in Austin.

Topics included:

• Integrating Speech Therapy into the Classroom with Susan Hobbs
• iPad Apps as Communication Devices with Darren Avery
• Sign Language for the Classroom with Brenda Bush
• Assistive Technology
• Literacy for the Active Learner
• Creating a Language Rich Environment for Students with Delays
• Writing Individualized Education Plans
• And more on inclusive and adaptive education!

Wednesday morning’s session was a special keynote session with Dan Habib, the father and filmmaker behind Including Samuel.

SUMMER’S HERE! Things to do in Austin with Kids with Special Needs - June 25, 2012

Hand to Hold hosted a Lunch and Learn at Dell Children’s Outpatient Rehab where we talked with family and providers about fun stuff to do with kids in and around Austin (paying special attention to getting out and about with special needs).  We talked about places to go, things to do at home, and many of the local attractions that are either designed with special needs in mind, or are very inclusive to the special needs community.  If you would like to see details on the locations and activities we talked about check out CLU Campaign’s  Things to do with Kids.  In addition to details on the locations and activities there are also notes from parents.  There are forms to make it easy to add your own activity and/or location as well as notes to existing entries.  All of the handouts and material discussed at the June Lunch and Learn is available for download on CLU.

Home Health for the NICU Graduate – May 14, 2012

Hand to Hold hosted a Lunch and Learn on Home Health for the NICU Graduate on May 14th, 2012 from 12:pm- 1:pm at Encompass Home Health. A discussion led by Rhea Fryar, Austin Area Manager, discussed questions and issues related to setting up Home Health for those babies who may need in-home medical care after the NICU.  Home health providers can make the transition from NICU to home easier. Tips for insurance coverage were shared in addition to loopholes to get the care your baby needs, how to select the right provider for your family, and how to get home health for your child. View the  Lunch & Learn – May 2012 – Flier.

Feeding and Nutrition for the NICU Grad – Part II – April 16, 2012

Families and providers joined us on April 16th for the second part of our Lunch and Learn about preemie feeding issues beyond infancy.  A panel of experts will answer questions and demystify the different types of feeding tubes, feeding clinics and swallow studies. A pediatric dietitian will also talk about some things to consider when your child is not able to consume a standard pediatric diet.

Materials Shared:

• All About Feeding Tubes
  by Dr. Rahel Berhane, a Gastroenterologist with ‘Specially for Children as well as Seton’s Comprehensive Care Clinic
• All About Feeding Therapy
  by Carmen Huston,  MA, CCC/SLP, a Feeding Therapist with Dell Children’s
• High Calorie Recipes
  by Lesley Ivey, LD, RD, a registered dietician from Austin’s First Steps
• Pediatric Nutrition Resources
  by Lesley Ivey, LD, RD
• Formula Comparisons
  by Lesley Ivey, LD, RD
• High Calorie Baby Food
  by Lesley Ivey, LD, RD
• Read Leslie Ivey’s interview “What Does a Dietitian Do?”

In effort to reach more of our families and professionals outside the Austin area as well as those that are not able to attend we are partnered with Mommies of Miracles.  The material supplied with our April Lunch and Learn was shared then a Facebook Event – MOMTalk offered another opportunity to ask questions, learn more great tips, and wrap up our Feeding Facts topic.  This Facebook event was on Wednesday, April 25th at 10:AM CST.

The Facebook Event was presented by Melanie Potock, MA, CCC-SLP of My Munch Bug.  Melanie is a national speaker on the topic of “feeding” and helping children learn to be more adventurous eaters. She works with a variety of children, from infants, to toddlers and preschoolers with medical challenges that impact their ability to enjoy food, to garden-variety picky eaters. Her advice has been shared in numerous publications, blogs and seminars. Mel is the author of Happy Mealtimes with Happy Kids and the executive producer of the acclaimed children’s CD, Dancing in the Kitchen: Songs that Celebrate the Joy of Food! Our panel will talk about all of the common feeding questions, concerns, share tips, and much more.  This session is sure to be packed full.  We hope that you will be able to join us.

Feeding and Nutrition for the NICU Grad – Part I – February 24, 2012

Hand to Hold will be hosting our next Lunch and Learn on Friday, February 24, 2012 from 12-1 pm at Austin’s First Steps High Risk Follow-Up Clinic. We will feature information on “Feeding and Nutrition for the NICU Grad” where we’ll be sharing what you need to know about nutrition and feeding to help your preemie grow and thrive. Our experts will discuss the pros and cons of both breast milk and formula, how and why to fortify breast milk, and tips for mothers to help mothers’ increase their milk production. See the flier from the event.

• Kay Needles Gregorio, Internationally Board Certified Lactation Consultant and a NICU nurse at St. David’s Medical Center, and
• Lesley Ivey, LD, RD, a registered dietician from Austin’s First Steps
• Tips for Increasing Your Milk Supply and Improving Your Pumping Success – by Kay Needles Gregorio
• Picking the Formula that is Right for Your Child’s Unique Nutritional Needs – Formula Comparisons and Details – by Leslie Ivey (Updated 4/25/12)
• Read Leslie Ivey’s interview “What Does a Dietitian Do?” and Kay Needle’s interview “What Does a Lactation Consultant Do?”

New Year-New You: The Importance of Self-Care – January 30, 2012

On Monday, January 30th we had a panel of speakers talk about ways for moms to stay healthy (physically, mentally, emotionally, spiritually and socially)

• Rhonda McMahon – a preemie mom and facilitator of Personal Renewal for Special Needs Moms.
• Jenn Larson, mom and co-founder of Austin’s Bump Club and Beyond, which provides local programs for moms and moms-to-be
• Kathryn Whitaker, a mother of 5 and NICU vet who will share survival tips for while you’re in the NICU or at home with a medically-fragile child

Resources from January’s session “New Year, New You”:

• Four Areas of Self Care
• Top 10 Tips for NICU Mom’s Health

Medicaid Buy-In for Children – December 9, 2011

On Friday, December 9th Kaye Beneke with Texas Health and Human Services introduced us all to a fairly new program- Medicaid Buy-In for Children (MBIC).  MBIC is a way for families to get their children with special needs Medicaid services.

Resources from MBIC:

• MBIC Application
• MBIC Flyer
• MBIC Presentation
• MBIC Webinar (created for ECI Professionals)

(All of the files above can also be found on the MBIC page- English & Spanish available)

All About Special Needs Trusts – November 10, 2011

On Thursday, November 10th Ronald G. Greening of Greening Associates answered our questions about Special Needs Trusts. This legal and financial tool helps parents to secure a better financial future for their child and protects your families benefits and legal rights. Contact The Greening Law Firm, P.C. for a complimentary consultation.
Resources from Greening Law Firm:

• Medicaid Planning
• Special Needs Trusts
• Guardianships and Alternatives to Guardianship
• Retirement Accounts

What Medicaid Waivers Are Right for You? – October 25, 2012

On Tuesday, October 25th, 2011 – Ginny Grote from the Medically Dependent Children Program (MDCP) and Elizabeth Tucker from EveryChild helped unravel the mysteries of Medicaid programs. They answered questions such as the following: What is a Medicaid Waiver? What is an interest list? What is Rider 28? How long is the wait? And how do you choose the correct program?
Resources from the Medicaid Waiver presentation:

• Medicaid Buy-In (English) (Spanish)
• Which Waiver Does What? (This information is specific to Texas)
• MDCP – What Does it Mean to be Medically Fragile? (criteria)
• Personal Care Services Brochure
• YES Waiver – Youth Empowerment Services for Mental Health (Travis and Bexar counties)
• DADS Long Term Services and Supports

Early Childhood Education Programs: ECI and the Transition to PPCD – September 7, 2011

On Wednesday, September 7th Marty Barnes and a panel of experts discussed Early Childhood Education Programs: ECI and the Transition to PPCD. Those who attended got personalized information on how to navigate the system whilew moving from one program to the next! If you are looking for help for your child (birth to three) watch this video by Texas Early Childhood Intervention (ECI) to learn more about what they offer visit  Texas ECI: Family to Family

The 411 on ECI and PPCD (including a side-by-side comparison)

MED 101: Your Guide to Medical Specialists – July 13, 2011

Parents and professionals sat down for lunch at  Rolly Pollies (Shops at the Galleria, 12700 Shops Pkwy, Suite 450, Bee Cave, TX 78738) on July 13, 2011 to hear Stephanie Key, R.N., M.S.N., C.P.N.P. from Austin Diagnostic Clinic Pediatrics present “MED 101: Your Guide to Medical Specialists.” Stephanie presented useful information about what different specialists do and how to build a team that will best fit your child’s needs. Our great thanks go out again to John Mann and his staff at Rolly Pollies for hosting us and for creating a place where  every child has fun and is included! Download this helpful guide to Medical Terms, Specialties, and Procedures.

Summer’s Here: Fun and Inclusive Activities for Your Family – June 8, 2011

Parents and providers came out on June 8, 2011 from 12:00 p.m to 1 p.m. at The Live Oak Center for Communication Disorders (3724 Jefferson St., Suite 316; Austin, Texas) for the initial discussion on “Summer’s Here: Fun and Inclusive Activities for Your Family.” Participants shared ideas for summer programs, camps, special events, discounts/deals and other local fun spots. Part of the presentation included local activities for special needs children. Download a flier to share with a friend. See a link to a comprehensive list of summer activities and ideas that were shared. Thanks to Marty Barnes for compiling this list.

What About Healthy Siblings – May 15, 2011

The May Quarterly Discussion Series was held on Sunday, May 15, 2011 from 6:30-8:30 p.m. at Covenant Presbyterian Church in North Austin. Panelists  also shared suggestions about how to carve out special sibling time and how parents can work at finding balance, while freeing themselves from the guilt associated with parenting children with different needs. Parents walked away with a better understanding of the struggles siblings in families of children with special health and developmental needs face and received practical suggestions on how to effectively support siblings.

Panelists who spoke at the event included the following:

• Khris Ford, LPC and Founder of My Healing Place
• Anne Claire Hickman, Child Life Specialist, Dell Children’s Medical Center
• Vanessa O’Dell, Social Worker, Dell Children’s Medical Center
• Emily McElmurry, Children’s Art Therapist and Teacher
• Joan Richburg, Adult Sibling and Physical Therapist in Leander ISD

Dinner was graciously provided by Buster’s BBQ and Rise and Shine Bakery. See the event flier. Read a recap of what was discussed.

Maintaining Emotional Engagement: Re-focusing the Eyes of Your Hearts – February 18, 2011

In keeping with Valentine’s Day, the most recent quarterly discussion series entitled “Maintaining Emotional Engagement: Re-focusing the Eyes of Your Hearts” was held February 18, 2011. When our worlds have been turned upside-down by an early birth, medical complications or the loss of a child, we seldom have the time or energy to nurture each other. Couples turned out to hear guest presenter, David Griffin, licensed professional counselor and board certified professional Christian counselor, talk about the tools needed to make their relationship with a partner a safe harbor. The discussion was open to and designed for believers of all faiths. Review the Powerpoint presentation.  Download a flier to share.

Couples enjoyed a date night! This interactive presentation included activities for both partners to do together. Couples enjoyed dinner compliments of Dream Dinners (620 North location) and dessert courtesy of La Pâtisserie by Luxe Sweets.  The Discussion Series was held at Covenant Presbyterian Church from 6:30-8:30 p.m.

David Griffin, MA, LPC, BCPCC, is licensed as a professional counselor and is a board certified professional Christian counselor with the International Board of Christian Counselors. Since 1984 he has dedicated his life to helping individuals and couples transform their lives by renewing the mind and living in emotional authenticity. His clinical training and expertise is in cognitive therapy for individuals and emotion-focused couples therapy, which complement scriptures. David has served adults, couples and adolescents in outpatient and inpatient settings with relationship issues, grief/loss, spiritual issues, stress/anxiety, depression and other mental health concerns.

David received his undergraduate degree at Texas Tech University in psychology and a Master’s degree at Southwestern Baptist Theological Seminary. He is also the author of Date Smart to Marry for Life published in the spring 2010. He currently in private practice in Austin, Texas where he lives with his spirited and lovely wife, Susan. They have been married since 1985 and share three, successful adult children.

Getting the Most Out of Early Intervention – September 30, 2010

The Fall 2010 Quarterly Discussion Series was held September 30, 2010 from 7 p.m. to 9 p.m. at Dell Children’s Medical Center in the Signe Auditorium. The event featured a talk about “Getting the Most Out of Early Intervention” by Chris Watkins of Early Childhood Intervention (ECI). Download the flier  from the event.

Review videos from the event:

• September 30 – Discussion Series Video – Part 1
• September 30 – Discussion Series Video – Part 2
• September 30 – Discussion Series Video – Part 3

Early childhood presents a brief window of opportunity to influence lifelong development and to prevent or minimize developmental challenges. Chris Watkins shared how to get the most out of early intervention, what happens upon transition out of the ECI program and what ongoing therapies may be necessary for continued developmental growth.

Following her talk, a panel of local therapists answered questions from the audience on a wide variety of topics. Panelists who attended included Doug Levine, PLLC, Growing Places Therapy Services; Jill Munch, CCC, SLP, Red Wagon Therapy; Donna Young-Smith, Little Tesoros; and Katie Navarro, PT, Dell Children’s Medical Center. They each underscored the importance of checking things out and asking questions if parents feel something isn’t right or have a suspicion. The earlier issues are addressed, the better it is. They encouraged parents to not be afraid to call if they had questions later on. After the panel, representatives from 13 local therapy practices attended for introductions and to answer questions.

Research shows early intervention has profoundly positive effects on preemies who may need assistance reaching developmental milestones. Because each child is different, some challenges may be seen early, and some many not be identified until a child starts school. Accessing developmental milestone checklists using the child’s adjusted age can be helpful as well as keeping in touch with your child’s pediatrician.

What Parents Said

“It was good to see you and the meeting was so informative. I now understand some of what is going on to this day with Jakey.” ~ Irma Schneider

“My husband and I really enjoyed the discussion series again last night. Thank you for offering this great resource to parents and we look forward to many more in the future.” ~ Katrina Moline

Chris Watkins is a certified, licensed speech language pathologist. She has worked for over 25 years in several capacities in the Texas Early Childhood Intervention (ECI) system as an assistant program director, training coordinator, a speech language pathology contractor, and as a staff ECI speech language pathologist.

Mind-Body Connection and Prematurity – June 23, 2010

The inaugural Discussion Series featured Dr. Jennifer Gunter, a nationally and internationally renowned obstetrician/gynecologist, mother and recent author of The Preemie Primer. Dr. Gunter discussed the “Mind-Body Connection and Prematurity” on June 23, 2010, from 7 p.m. to 9 p.m. The free event was open to the public and took place at St. David’s Medical Center, 911 East 32^nd St., Austin, Texas, in the Conference Hall (Basement). Download a flier (PDF) from the event.

Mind-Body Connection & Prematurity Videos:
Part 1 | Part 2 | Part 3 | Part 4

Whether it’s been days or years since you’ve uttered the words “premature” or “NICU”, meeting Dr. Jennifer Gunter was a do-not-miss opportunity for families whose pregnancy did not go as planned. If your baby is in the NICU or already in kindergarten…If you’re managing ongoing medical care or feel as though the entire experience is long behind you… this discussion was valuable in understanding how your well-being has been affected. The adage “take care of yourself so you can take care of others” certainly applies here. Dr. Gunter likens the birth of a premature baby to “being dropped in a foreign country without a guide, a map or language skills.”She delved into the science behind the mind-body connection and how it helps parents ensure their children reach their full potential.

She also shared techniques, the benefit of support programs, and unrecognized symptoms of depression and PTSD. Even if you feel unfazed, this unique opportunity will strengthen your ability to support friends who have a similar experience or help as you serve as a volunteer peer in Hand to Hold’s Helping Hands program which matches seasoned NICU parents with recent NICU families.

Parents who’ve shared a similar journey met one another and heard from Dr. Gunter. Parents who’ve shared a similar journey met one another and heard from Dr. Gunter. Read her personal story.

Dr. Jennifer Gunter is an Internationally renowned OB/GYN and leader in the field of women’s pain medicine. She is also the mother of three boys born extremely prematurely, two of whom survived. She is the author of The Preemie Primer, a comprehensive and practical resource for parents of premature babies to help guide them from pregnancy, through the NICU, to the toddler years and beyond.