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2002 Newsletter Index
September 2002 December 2002

Program Update: Project DOCC (NOW CALLED MEd – MEDICAL EDUCATION PROGRAM)

Family Stories: How I Survive the Holidays! A compilation of suggestions from parents for surviving holiday stress.

From Our Families: A personal story about the power of parent to parent support.

Program Update: A great beginning - Texas Parent to Parent’s first year.

From Our Families: A letter to my daughter’s teachers

Book Review: From Emotions to Advocacy

Professional Spotlight: Linda Scullenger with Leander Independent School District. 

Care for the Caregiver: Give yourself a Break for Just Five Minutes

Reasons to Celebrate – Innovative School Programs: Learn about Parent Liaisons

Places to Go, Things to See!: Finding the right public setting for us!

Reasons to Celebrate – Innovative School Programs: Learn about The Hali Project
Around the State: Partners in Policymaking - Leadership & Advocacy Training for parents & self-advocates

Places to Go, Things to See!: Getting out to the mall, to hear music and to the beach!

Reasons to Celebrate – Innovative School Programs: Learn about the Parent and School Support Team at Austin ISD.

Around the State: Learn about a new program, EveryChild Inc.
Legislative Update: Look Out Families . . Here They Come . . . The 78th Legislature

Legislative Update: Gearing up to educate the legislators

Around the State: Proposed Rule Changes Could Limit Child Care

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Project DOCC - Austin
Advances in medicine, technology and genetics have given our children and our families new hope for the future. A growing population of children with chronic illness and developmental disabilities is living at home and actively participating in our communities. The goal of Project DOCC – Austin is to provide to Pediatric and Family Practice Residents and other medical professionals a comprehensive understanding of life with a child with chronic illness or disabilities. We will accomplish this by widening their perspective from hospital/office to the home and community, and by presenting the benefit of a partnership between the physician and family to improve the quality of life for our families and communities, and the educational opportunities for our children.  Thanks to a grant from the Texas Council on Developmental Disabilities, Texas Parent to Parent has started a Project DOCC – Austin through Brackenridge Hospital and the Seton Healthcare Network.  We are working with Dr. Laura McGuinn at the Specialty Care Unit with the Pediatric Residency Program and Dr. Jennifer Arnecilla at the Blackstock Clinic with the Family Practice Residency Program.
A “Grand Rounds” panel presentation will be conducted for the medical community.  Parent Coordinators will recruit and train Parent Teachers and develop, with the hospital, a schedule for each resident to participate in a home visit and a parent interview.  Residents will also hear a panel of parents from different cultural backgrounds speak to issues about parenting within their culture and the difficulties they face caring for a child with a chronic illness or disability.  One of the project's objectives is enhancing the Pediatric and Family Practice Residents' understanding of the global impact (on family, school, community, social and vocational issues, as well as health) of a chronic illness and/or disability on the child and his family.
Home visits enhance the residents’ understanding of the impact a child with a chronic illness or developmental disability has on family dynamics. The residents spend several hours with a family as they go through their daily activities of specialized equipment, medications, therapists, nurses and “typical kid/family” activities. They will quickly understand how a physician's referral to nursing care or a feeding pump can help a family stay home together, rather than having one parent in the hospital with the child, and one at home trying to be both parents.
School visits during Community Week will emphasize the role the physician plays outside of the office/hospital setting and in the community. From a medical protocol for a child with chronic illness to the prescription needed for assistive technology, the physician helps pave the way ot our children‘s education. With the Parent Interview, we will teach physicians crucial skills, from how to discuss a Do Not Resuscitate order to how to understand a family's goals, fears and needs.
First-hand experience with community activities and the development of an extensive Personal Resource Guide will help Residents develop a greater awareness of the value of community supports and inclusion in community activities in the lives of children with chronic illness/disability and their families. To promote the objective of a parent-professional collaboration built on mutual respect, the project will use parent interviews, or conversation in a neutral environment, to provide parents and physicians with an opportunity to speak and to ask questions openly. Communication is the backbone of any relationship between the parent of a child with a chronic illness or developmental disability and the physician.
There are three other Project DOCC Programs in Texas either started or expanded with funding from the Texas Council for Developmental Disabilitie a new program in San Antonio at University of Texas Health Science Center, Wilford Hall Medical Center and Brooke Army Medical Center; an expansion of the Project DOCC - Houston at Texas Children's Hospital; and an expansion of  Project DOCC – Corpus Christi.  Texas Parent to Parent plans to expand Project DOCC to other sites in Texas in 2003. 
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What Parent to Parent Support Meant to
Me After My Son's Diagnosis of Autism
By Nancy Swiderski Brach

My son has WHAT???? I felt like my life had just been turned into a 500-piece unsolved puzzle, strewn all over the floor in a dark room, with no hope of ever putting it all together again.  What was to become of our life now . . . now that a doctor had diagnosed Chancellor with autism?
Where could I turn?  Who could I even talk to about this?  My family would never believe it, and besides, what did I know about it myself?  Things could not have been worse if I had been out in the middle of the ocean without a lifeboat.  I felt as if I was drowning, nobody and nothing but endless water, no help in sight, just me and my little son.
A doctor had now given a name to why my son did not interact well with the other little ones at daycare, why he retreated from crowded rooms and noisy situations, why he did not talk as much as he used to. And now the daycare director had told me they could no longer handle my son, and I was running out of time off from my job. I was having a long, bad, wide-awake dream, but I was not asleep. My reality was that I had no quick fix, no creative solution, and no way to make it work anymore. The walls were tumbling down around me. How would I save my son? How could my life go on?
Little by little, I learned about The System, turning over big rocks and finding little fragments of answers. Autism Spectrum Disorder made only one thing perfectly clear about itself from the start: It is gray and murky territory with as many theoretical treatments as there are quirky symptoms. It is no place to venture alone without an experienced guide. And so I came to find Pilot Parent.
I remember thinking, Pilot Parent?  What a strange name.  But I called, and from the first conversation I had with Tammy McConley Mann, I knew she was going to pilot me out of my deep despair, that this was the beginning of the way out.  Here was a rare person who knew what I meant when I said the word autism and engaged me in conversation about everything under the sun except autism.  She made conversation and she made me laugh, and she had a genuine interest in helping me make my life work again.  With her own daughter with special needs from a head injury, here was Tammy who chose to make it her job to make life for parents of children with special needs easier.  She arranged for another Mom of a little boy with autism to call me, and she in turn helped clear a path through the jungle of information I was slashing through with my dull little machete.  She pointed me toward others who could help and support me in my family crisis, and gave me places to go where I could talk and learn and cry. Eventually I came to learn that even though autism is not going to go away; neither in fact are my happiness nor my world.  Inch by inch we together found ways to cope and grow.
That was almost five years ago, when I first had the good fortune to meet my old friend Tammy Mann.  That was when I prayed my son would just answer yes or no to some simple question I had already asked 5 times in 5 different ways, to no avail, with no response.  Today, my son Chancellor is going on seven, and he not only answers most of my questions, but asks quite a few of his own.  He talks on the phone and engages other kids in games of tag and baseball, and even invites them into his tree house to play.
And you know what?  It feels good, good to be coming full circle.  Good like when my son puts his little strong arms around me and says, I love you, Mama.
(It is my great hope that Tammy and all of us who are now part of the new Texas Parent to Parent organization continue to play their important roles in the creation of ongoing success stories like Chancellor’s and mine.)
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Who is This Child of Mine?
Colleen Horton, Erin's mom, Austin, Texas 
My daughter Erin - she is laughter and smiles, energy galore, and a billion tons of curiosity stuffed into a 76-pound body.  She has a sense of compassion that is beyond her years and a desire for connections, friendships, that often goes unmet.  Erin is determined, often stubborn, creative, and defiant.  All of these wonderful characteristics help her convince those who may have low expectations that she is capable of much more than they think.
Erin is an "Animal Planet junkie," a lover of ice cream, a little sister, and a niece to a bundle of aunts and uncles that adore her.  She is the caretaker of her cat, a horse lover, a bike rider, a volleyball player, a snake hunter, and a swimmer.  Simply put, she's an eleven-year-old girl.
Erin has skied in Colorado, she has climbed mountains in Costa Rica, she has flown in a small plane over the ocean, she has visited Disney World twice, she's been a Washington tourist on several occasions, she has played in the fresh air of New Mexico and on the white sands of Pensacola Beach. Erin was invited to the White House by one president and the Texas State Capitol by a governor (now president).  On both occasions, they were more enamored with her than she was with them -- evidence of her intelligence.
Erin is courageous.  She faces each day with the realization that not everyone will be helpful, that not everyone will be kind, and that not everyone will understand that her disabilities are only a small piece of who she is.  She knows that not everyone will honor and respect her differences, as they should.  She is learning to cope and handle the discrimination that often accompanies disabilities, but she is young and not quite there yet.  I have to admit though, I am much older and I don't always handle it well either.
Erin knows about her disabilities.  She knows that this thing mom calls autism is what makes some things tough for her.  She doesn't yet understand why or how, but it helps to know that there's a reason she can't read or write or do math quite as well as the others in her class.  She knows that her disabilities affect how she reacts to different situations, but she doesn't really understand them and often can't control them.  It's just part of who she is.
Erin is a problem solver.  She knows what she wants and she finds ways to accomplish her missions.  She doesn't easily accept the frequent attempts of the adults in her life to squash her efforts.  Years from now we'll call this creativity.
Erin is a child of God, not a "special" child of God, simply one of many - just like the rest.  She will grow, she will learn, she will work, and she will live her life as she determines.  Along the way, she will teach many people many things.  She has taught me to live and love from my soul.  Lucky are those who will have the opportunity to learn the lessons she can teach.
Erin is the daughter I dreamed of, and much, much more.
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Carnival Cruise for Kaly – Thanks to Linda Scullenger for Believing in the
ABILITY of our Kids
 By Tammy Mann, Texas Parent to Parent
This past school year, my daughter and four of her classmates went on a Carnival Cruise to Cancun and Cozmel chaperoned by their teacher, Linda Scullenger and two of the classroom aids - Mrs. Bridget and Mrs. Liz.  And, if that is not wonderful enough, the cruise cost parents a whopping $50.00! 
Linda has been with the Leander Independent School District for sixteen years.   She has taught the Community Based Instruction Class all of those sixteen years.  Linda has been involved with many extra activities in the district including Special Olympics, but that alone is not why parents request her to be their child’s teacher.  Linda believes in our kids and she believes in us as parents.  She nurtures them as well as us without our even knowing it.
Kaly’s first year in high school was going along pretty well.  One day we were running late for the bus so I took Kaly to school.  I phoned ahead and said “I was thinking I would drop Kaly off at the door and we could see if she could find her class.”  Sure, great idea, I was told, only later to learn that she knew her way around most of the high school already! 
Linda believes the students need to be independent and doesn’t usually allow parents on class excursions.  However, Kaly uses a wheelchair and on a few occasions I have been allowed to be the “driver” for some of these excursions because of our van with the lift.  One such excursion was this past winter holiday.  We began around 9:00 a.m. with a visit to a classmate that had recently moved into nursing care.  Then the class was off to the mall to purchase presents for their classmates - they had drawn names as one would do in an office.  In addition, they had $50.00 they could use to purchase presents for themselves or others.  This mall adventure lasted all day and at dinner time we were off to the Olive Garden.  I was allowed to have dinner with the class; otherwise, I went off to do my own thing.  After dinner, the class went to see the ballet “The Nutcracker” and I picked them up again around 10:00 p.m.  I do not know about the teachers but I as the driver was exhausted!
Home Coming is another adventure in the Community Based Instruction classroom.  Mums are ordered for all of the girls, there is usually a dinner at the school and then off to the football game.
The class has various jobs both in the district and the community.  They have the usual candy selling fundraiser that I for one will never complain about again!  They have individual bank accounts and work on managing their money.  I have been asked one time in 3 years for money to pay for something that the class was doing.
Linda says “the end of the year trip is in place of the students’ final exam.”  This is how she is able to see what the students have learned and make sure they can transfer that learning into new locations.  The cruise she says was a little extravagant but the kids earned it and during the class meeting, they all came up with ideas.  They then voted and the cruise won!  It was agreed upon that if any of the parents said no, no one would go.  The class would do something else.  Who could say no - when would our kids have the opportunity to do this again!  Many of the parents said they had not ever been on a cruise.  Linda has said many times that she and the other ladies come back with a renewed respect for parents and what we do on a daily basis.
he trip was also very important because it is Linda’s last class trip.  She has taken a new position with the district as a Special Education Teacher Facilitator.  Yes, we are all very sad but we trust Linda with hiring a new teacher that she trusts with “her kids” and we know that she has a special interest in starting new programs within the district for our kids as well as the kids to come.  And, she is only a phone call away!  Thank you, Linda, for all that you have done to show everyone what our kids can do!
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Parent Liaisons for Round Rock Independent School District
By Jeane Johnson, Parent Liaison, Round Rock ISD
Round Rock Independent School District (RRISD) employs two part time special education parent liaisons.  They are at this time, Jeane Johnson (formerly of The Arc of the Capital Area’s Pilot Parent Program) and Oscar Arrambide.  Both Oscar and Jeane have held these positions for 2 years.  Oscar is a licensed social worker, and Jeane has a master’s degree in counseling and a child receiving special education services in RRISD.
The positions are funded through the general special education budget, which was initially approved by Dr. Gaul our superintendent.  He has strongly stated in the Blueprint for Excellence that "All children will learn whatever it takes".  He has also stated to the district's Special Education Parent Advisory Council (SEPAC) that he believes parental involvement and education are critical to successful learning for the children of RRISD.
Last year, the district provided one portable classroom at Deepwood Elementary to develop a Parent Resource Center.  This center includes a library for parents and staff on special needs/education issues, parent liaison desks, and meeting space for parents and staff.  We are very proud of the development of this resource center.
The parent liaisons provide information and support to parents and staff.  This is done individually, through support groups and trainings, and through the monthly Williamson County Family Support Network meetings.  The parent liaisons hold positions on the SEPAC’s Executive Board.  They are the liaisons between staff and parents regarding school issues.  They also work closely with the SEPAC campus representatives.  These representatives are parents of children receiving special education services at each campus in the district who are appointed by the principal and/or staff.  They are willing to work with parents and staff regarding special education issues.  There is a volunteer campus representative on each campus – if you would like to speak to the one on your campus, please see the information below. 
If you would like more information regarding the RRISD parent liaisons, or the Special Education Parents’ Advisory Council and campus representatives, please call Jeane Johnson a 512-464 4488, or email her at Jeane_Johnson@roundrockisd.org.
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“Your Daughter has Mental Retardation!”
By Brad Thompson, The Hali Project, Canyon, Texas
It is amazing how a few simple words can stop time, change reality, and in an instant, reorder your priorities.  If you are the parent of a child with special needs you have, without a doubt, had a similar experience.  For the parents, the first time you hear someone tell you your child is different is as great a stressor as you will ever experience – as great as the death of a very dear loved one.  That moment will produce a wide range of emotions – anger, guilt, fear, grief.
As a result of our family’s struggles to navigate the systems we found ourselves involved with as a result of Hali’s challenges, we began a special project to help parents of children with disabilities.  Our program began in two schools in January 2000 and has grown to 16 schools currently.  We are now working with the Children with Special Healthcare Needs division of the Texas Department of Health and the Texas Education Agency.  These agencies have partnered with us to develop a parent training program entitled “Empowered Parents,” an educational service designed to be led by parents to help parents navigate a very complicated system to access the services our children require.
The Empowered Parent Training Program provides a solid foundation for parents to become the best possible advocates for their children.  We begin by discussing the grief process.  This is important because before we can advocate for our children, we must be able to accept them.  We must also know that things will happen throughout their lives that will be difficult to accept.  We must be able to work through those things back to acceptance.
From the grief concept, we move on to the details of everyday life.  We provide sessions on problem solving, communication, goal setting, and assertiveness training.  We teach parents how to apply those skills in sessions dealing with laws that impact our families such as IDEA and ADA.  We discuss ARD meetings and IEP’s.  We also spend a session talking about transition and how to prepare for it.
In addition to addressing education, our program also tries to give parents insight into the medical field and insurance.  Sessions address working with a case manager, dealing with insurance – both public and private, and communicating with doctors.
Finally, we talk about balancing care and communicating with all family members.  A child with special needs influence goes far beyond the parents.  It is important that his/her care does not come at the expense of other important relationships in our lives.
If you would like to know more about this program, feel free to contact Brad Thompson at (806) 352-5647 or by e-mail at bthompson@southwestcofc.org.
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Places to Go, Things to see!

By Tammy Mann, Texas Parent to Parent
Having a daughter who uses a wheelchair for mobility has not seemed to put a damper on our “on-the-go” life.  We are always going someplace!  My daughter is as much an extrovert as her mother.  The mall is a regular in most of our weekends (thank goodness for The Dollar store!).  Some of the stores are more accessible than others, as you learn quickly.  Sears is one of the most congested stores I have been in except for Kirkland’s.  The difference is that the staff at Kirkland’s will happily move things to ensure you have a pleasant shopping experience.
Being a teenager (and her mother’s child), my daughter loves music.  We have made friends with a local entertainer, Lisa Tingle, who performs acoustically on most Fridays from starting at 7:00 p.m. in downtown Austin.  The staff there are wonderful, the audience is mostly regular Tingle fans and Lisa herself is awesome.  Kaly loves it and is recognized and welcomed by everyone.  We have also taken our daughter to other music events in the music district of Austin. The Pier is somewhat accessible but Steamboat is totally accessible.  It is also an all-ages club so much of the crowd is her peers and again, the owner and the staff are wonderful to Kaly.  I have found that the early shows work the best for us - it’s less crowded, has fewer intoxicated people, less smoke and is still lots of fun!
Another one of Kaly’s favorite things to do combines the mall and music –  Kareoke at Chelsea’s Pub.  Unfortunately, the ones in Austin have gone out of business and we have not found the energy to find a new karaoke location.  I have heard that another restaurant in Austin, You Are Cooks, has recently started a karaoke program and the same person from Chelsea’s is the D.J., but we have not tried it . . . yet!
OK, so you don’t like the mall and music is not your thing -  the movies have accessible seating - some better than others but still accessible.  If you have not tried taking your child to a movie, start with a dollar theater and an early show.  They are less crowded and a little easier to leave before the movie is over if it doesn’t work out.
We have also gone to the beach at Galveston.  The city actually provided PVC pipe beach wheelchairs.  There are even places where we could drive on the beach and let the lift down right at the water!  We have taken out-of-state vacations and some stories are better than others!  If you have questions about places to go or  things to do, please e-mail me!  I am happy to help.  If you would like to contribute a story on some of your favorite places or ideas, we’ll be more than happy to publish it.  It does not have to be an accessible place but we need to know that information if possible.   You can email me at Tammy-txp2p@sbcglobal.net
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Every Child, Inc. Believes there is a Family for Every Child
For every child residing in an institution, there are many with similar disabilities living in families, attending neighborhood schools, and participating in their communities.  Helping families (birth-families and support-families) to plan for and access the supports and services they need will help to create opportunities for children with disabilities to experience the benefits of growing up in families.
The EveryChild Coalition was formed to: 1) bring attention to the number of Texas children residing in institutions, 2) help to identify barriers that exist in the current long-term care system that contribute to children being placed in and remaining in institutions, 3) educate policymakers on the affects of institutionalization on children, 4) promote effective permanency planning in Texas, and 5) assist in the development of family-based alternatives for children with disabilities in order to provide quality alternatives to institutional care.
Most children with disabilities live at home with parents, grandparents, or foster parents. There are currently, however, between 1,200 - 1,500 children with disabilities residing in Texas institutions.  An institution is defined as any facility where children are cared for by "shift-staff. " For various reasons, these children have been placed in state schools, care facilities, nursing homes, institutions, and group homes.  Research has shown that while it is possible for institutions to provide food, clothing, and shelter (basic care), institutionalization negatively impacts a child's psychological, emotional, physical, and cognitive growth.  Often, families exhausted by care needs of their children have had no other alternative but to place their children in a facility.
Unfortunately, experience and data have also shown that once institutionalized, there is less than a 20% chance that these children will have the opportunity to return to their birth-families.  Creating family-based alternatives is necessary to provide opportunities for children with disabilities to live with families and have the quality of life they deserve.  One of the primary goals of the EveryChild Coalition is to increase the state's capacity to provide options to institutional care for children with disabilities. Possible alternatives can include another family who is carefully chosen and prepared to care for a child.  Another alternative is the possibility of a support family sharing the care of a child with a birth family.
In February, 2002, the Texas Health and Human Service Commission issued a request for proposals for a community organization to develop and implement a system of family-based alternatives for children in institutions.  Through a collaborative effort, EveryChild, Inc. partnered with six organizations to develop a plan for such a system.  The EveryChild, Inc. proposal was accepted and a contract with HHSC has been executed.
Under the direction of Dr. Nancy Rosenau, this project will demonstrate how the long-term care system can work to build trusting relationships with birth-families of children in institutions, and help them discover options that may not have been available, or that they were not aware of, when their child was placed.
The project will also devote concerted energy to recruiting families who might be interested in supporting a child.  This project is designed to identify and demonstrate best practices in:  1)        identifying the support needs of children with disabilities in institutions,
2)         developing a variety of family-based alternatives by finding caring, safe families to provide nurturing environments in which these children can grow,
3)        preparing birth-families and support-families to work together or possibly share care  for the benefit of the child,  and
4)        providing the ongoing supports needed to ensure quality long-term relationships for the child.
 The current project is funded through August, 2003.  While it is encouraging that the state has the desire to move forward with this important initiative for children in institutions, it must be recognized that at the end of this initial 16-month period, this project will still be in its infancy.  We have spent many decades building and maintaining a system that promotes institutionalization of our children.  It will take a significant commitment of time and resources to create a system of family-based options that can improve the quality of life for these children.
 If you would like more information on this project, or might be interested in discovering more about what it means to be a support-family to a child with disabilities, please contact Lisa Shepard at 512-232-0768.
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What's Looming Ahead?

Colleen Horton, Texas Center for Disability Studies
It's hard to believe, but in a few short months, Texas legislators will be meeting in Austin to contemplate again the myriad of issues that come before them.  Included in that massive bundle will be issues that directly affect the lives of our children with disabilities.  Some of the legislation that will be proposed will be good and could help to improve the lives of our children.  Other legislation could further reduce a family's ability to access services.  All of the legislation that involves our children requires our attention.
Adequate funding for community services is the critical component in supporting families, yet many legislators do not consider this a priority.  This isn't necessarily due to a lack of concern, but is often due to a lack of awareness.  Think of our lives before we had children with disabilities.  Funding Medicaid waiver services was not something that kept us awake at night…I would venture to guess that most of us never new Medicaid waivers existed.
Legislators often don't know the reality and the urgency of the need to support families caring for children with disabilities.  Most have never had any personal experience that would make them aware.  It is our responsibility -- yours and mine -- to invest time and energy to make them understand our strong commitment to care for our children at home and the challenges that commitment often presents.  It is our responsibility to talk to them about our lives and the lives of our children.  It is up to us to make sure they understand that not supporting children in families only costs the state more when families are forced to institutionalize their children because they can't get the help they need.
Legislators will make many decisions that will affect the course of the lives of our kids.  They have a lot to learn and we are the experts that must teach them.  Now is the time to start gearing up to do your part to improve the way our states supports children and families.  Here are some things that you can do:
·         Connect with other parents in your local community -- advocacy work is always easier when not done alone.
·         Get connected with disability organizations that can keep you up-to-date on the issues.
·         Get some advocacy training for your local network to help alleviate some of the discomfort that often accompanies new adventures.
·         Find out who your representative and senator are and contact their staff.  Make an appointment to visit them and let them know that you will be keeping in touch throughout the legislative session.  Remember, they work for you.
When action alerts are sent out requesting that families contact legislators on an issue, the need is very real.  Make a commitment that you will respond.  Every letter, every phone call, every email, and every fax is counted when legislators make their decisions.  If they don't hear from us, we have no right to complain about their decisions.
For information on advocacy training and resources to help you stay informed, please contact Colleen Horton at colleen.horton@mail.utexas.edu or by phone at 800/828-7839.
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A Great Beginning — Texas Parent to Parent’s First Year!

By Laura J. Warren, Texas Parent to Parent

What a year!! What started with a dream and a few people discussing the idea of a statewide parent to parent program in Texas is now a reality. Finding our talented grant writer, Nancy Post, who agreed to help us write grants in December 2001, we were off and running. Our first Board of Directors meeting was in January, we were incorporated in February, designated a nonprofit organization in March, received our first grant in April, and moved into an office in June. We have over 170 parents on our database and we have not really advertised yet. We are still scrambling to keep up with writing grants, matching parents, running a Federal grant, and keeping up with all the Board, State, and Federal requirements of a nonprofit organization, but we are very pleased with where we stand at the end of 2002.
We want to thank our Board of Directors for all their hard work! To Sarah Barnes, Nancy Swiderski Brach, Margaret Bruch, and Madeline Sutherland - thank you and you will be missed! To our new members, we thank you for the time commitment to help us move TxP2P forward in the years to come - Raymond Turner, Denise Brady, Maria Garcia, Leticia Padilla, and Bryan Sperry. To those members who saw us through this year and will continue helping us in the years to come, a very special thank you – Debbie Burt, Jan and Charlie DiMare, Susan Prior, and Leah Rummel. And to our Board Chair, Val Sutorius – you are amazing – one of the hardest-working, ever-learning, dedicated women we have met. To Nancy Post, your willingness to zip down to Austin to work with us or attend a seminar is so appreciated – thanks for all you have done for us! We could not have come so far so fast without all of you and our dedicated volunteers. So, Sue, Tammy, Patty, and I all say a heartfelt THANK YOU to you all!!

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How I Survive the Holidays!
Compiled by Laura J. Warren, Texas Parent to Parent

........

Let’s face it – if you have a child with a disability, mild or severe, visible or hidden, your live is stressful. So, if the holidays are a stressful time for the general public, they will be doubly stressful for us. I’ve watched a lot of people go through the holidays, some more successfully than others, and decided to ask them for their best tips on surviving the holidays. Here’s what they said:

  • I make sure I take a little time for myself . . . without my children, dear husband and pet dogs. I enjoy walking - just 30 minutes can make a world of difference.
  • Give yourself freedom to JUST SAY NO to something you really don't want to do. Whether it is a fundraising meeting, a PTA meeting, whatever task you really just don't want to do or have run out of mental or physical energy for, JUST SAY NO. True, this is not something you can "get away with" on a regular basis with whatever your responsibilities are, but if you own up to being just too tired or too overwhelmed, chances are your honesty will be appreciated. And if it's NOT, well, what were you pressing yourself to do it for if there wasn't going to be any appreciation?
  • Something I do for myself when we've got a large group over (large for us is more than the 5 in our family!) is escape to our bedroom for a quick respite from the excitement. Entertaining exhausts me but I do enjoy family gatherings. I've just recognized that a five-minute break from the group can keep me going longer.
  • Everyday, take ten minutes in a quiet room, lying down, with or without music/headphones, and FREE your MIND! Really focus on an absence of thought, and see where your mind goes. Whatever thoughts DO come in must be tossed away if they are stressful or negative. Just BE. No role, no problem, nothing to solve. Ten minutes. JUST TAKE IT. Take twenty if possible.
  • Delegate whatever you can to others; give up traditions you don't enjoy; and most of all be careful to eat right, exercise, and get plenty of sleep. Holidays are to be enjoyed and if the one who is 90% responsible for the work of them isn't enjoying herself, then she can't make them enjoyable for the rest of the family. As my husband says, if Momma ain't happy, ain't nobody happy.
  • My key to surviving the holidays is to lower expectations. I have worked hard at establishing new traditions for our family that are nothing like what we did when I was a child or what the Norman Rockwell America is pictured as doing. Our traditions are much more informal, flexible, small scale, workable. That way we aren't disappointed by not conforming to the perfect picture. An example: the Christmas Day when my son was having a really bad day--maybe he was getting sick or something but he was terrible--crying, not cooperating, getting into one thing and being unable to switch to something else, including sitting down to Christmas lunch. Finally, we found the only thing that calmed him down was sitting in our car parked in the garage. And that's where he ended up eating Christmas lunch! No silver, no china, no demands on anyone. If he didn't want to open gifts, we would let him do something else and come back to gifts when things were quiet. The only guests we invite on holidays are people who know us well and can put up with his unconventional behavior. Is that giving in to my son or being healthy, realistic and flexible? I don't know--but I do know that this approach has really helped us with holidays.
  • To get through the holidays, we try to keep the number of people visiting to a minimum as well as preparing our 8-year-old son with PDD for company through the use of pictures from the previous holidays, social stories, telling him stories about "the little boy whose cousins, aunts, etc. came to visit" for the holidays. We actually get respite from the various people who are available and offer to take care of him while we shop, go to the movies, etc.
  • We're always the first to leave group gatherings. We've just learned from experience that pushing the kids (even when they beg to stay longer) ends up with disaster when we get home (they get cranky, fight with each other, and become impossible to reason with). We all enjoy the holiday events more when we set limits, not only to how many invitations we accept, but also to how long we'll stay before we ever leave the house for the event.
  • When we're going to be with a big group of family, I plan and get the supplies together for a kids' activity. It’s usually some kind of holiday decoration or food. That way I know it's something my daughter can participate in safely and not feel left out of the activities. Of course, the kids can choose to participate or not but at least I know that the only options available won't be just rollerblading, football, etc.
  • We stock up on bubbles, playdough, and other activities that can by shared by the children. Because my son is possessive of HIS toys, these are presented as separate from his, i.e. community property.
  • As for the kids, I recommend taking a sitter along on those Christmas shopping trips. I recently hired a student sitter, and for every paid four hours, he "gives" us a break time hour where he comes along on little planned trips, so I can focus on what I am trying to/want to do. Plus, I have made a point of getting time via this same sitter every week to spend time with just my husband.
  • To help with behavior issues of having to "work" again once school starts, we enlist the help of teachers in providing practice sheets of work he is struggling with and set aside time every day, at least every other day, to "work".
  • When we travel, my kids each have a backpack each that they fill with puzzles, books, crayons, etc. that they can take to entertain themselves. We also play guessing games of items we see along the road or goofy alphabet games.
  • One thing that I have been doing, it's not really related to coping, but I guess integrating an additional something worthwhile into gift-giving, is give people gifts that benefit the International Rett Syndrome Association. You should have seen the looks on her therapists' faces last year when they all got a BIG roll of plastic wrap and NuSkin body lotion. (The plastic wrap was a fund raiser for IRSA, and I sell NuSkin products and donate the profits to IRSA.) It was really funny because they joked that they could do body wraps with them and lose some weight! This year, I ordered "Heavenly Chocolates" for gifts from a family in Florida that makes homemade candies and the profits are going to fund the future of their daughter with Rett Syndrome. She is now a young adult and they started the company when she was a toddler. The adults in our family are not giving gifts this year but donating to the charity of our choice, which means mostly to the IRSA. When parents of children with disabilities are asked by friends and family what they could get their child (or them) for Christmas, they could respond by asking for a donation to the appropriate organization (in the child's name) to be made to the local or national Down syndrome Association, etc.
  • I try to buy gifts all year long whenever I see something that's just right for a person on my list and try to stay away from the malls at Christmas. Instead of individual gifts for kids in a family I usually get something they can all do--board games, boxes of art supplies, boxes of "let's pretend" stuff (thrift stores are a good source)--or give an IOU for an activity in the future like a trip to the zoo or lunch at McDonalds. Outdoor activity "kits" are fun, too--like a bird feeder and a bag of seed.
  • Sam's Club has become my favorite friend around the holidays.  They have huge pecan pies without the huge price and my family loves them. They are a hit at my house and they did not take all the time I don't have to make.
  • I do as much cookie baking ahead as possible and freeze them. Slice and bake ones are great for kids to do--from scratch with little ones is just too much of a mess. Make get-togethers potluck.
  • Decorations--if it's just for Christmas, it's work to unpack, then pack up again after the holidays, and find some place to store. I like to use arrangements with fresh fruits and vegetables and greenery from the garden—what doesn't get eaten afterwards can be pitched in the compost heap. Also, lots of candles.
  • Give a party for another holiday--Valentine's, 4th of July--rather than Christmas. And make it potluck. Send cards for another holiday – people are just as happy to hear from you any time of the year. Start a new tradition!

So, I guess it all boils down to three things: keep it simple, don't try for perfection, make new traditions if necessary and try to take care of yourself.

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Book Review: From Emotions to Advocacy
by Pete & Pam Wright
Review by Rosemary Alexander, PhD, Austin

From Emotions to Advocacy is the latest publication by Pete and Pam Wright, the special education gurus known across the country for their family friendly advocacy. Through publications, a web site, and public appearances, they assist families across the country with their special education issues.
The title tells us that parents must work our way through the strong emotions that accompany having a child with disabilities before we can become strong advocates. He says, “Accept your emotions as normal. Understand that if you do not control your emotions, you may damage or destroy your child. Use your emotions to motivate you to learn new information and skills.”
Even though Pete Wright is a big-time lawyer who has argued many special education cases in court, he encourages parents to build a positive relationship with your child’s school without sacrificing what you believe your child needs. The book instructs the reader about special education law but also provides strategies, such as letter writing, interpreting test scores, creating a paper trail, and setting meeting agendas that help parents to negotiate with school staff. He helps us understand the parent-school conflict and how to resolve it. He provides ways to organize your child’s records and how to write measurable goals and objectives. He urges parents to use these strategies while maintaining respectful and cordial interactions with school staff.
“As your child’s advocate, your goal is not to litigate. Your goal is to use tactics and strategies to secure quality services for your child. When you negotiate with school personnel, you market win-win solutions to problems. In the end, you and school personnel should be able to sit down together and break bread. When you do this, you have successfully completed your journey from emotions to advocacy.”
I have been assisting other families through the ARD process for the past 10 years. This is the first book I have read that confirms many ideas and experiences I have had about helping families and gives me many ideas for new ways to help. It also confirms my feelings about how to work with my own son’s school, giving me new confidence to work through my emotions and emerge as a strong, caring advocate.
You can order this book from www.feta.com.

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Give Yourself a Break for Just Five Minutes

By Patty Geisinger, Austin

Isn’t it funny that we have all these silly parties to attend just so we can pamper ourselves? Pampered Chef, Southern Living, Creative Memories, Tupperware, Mary Kay, Avon , Partylite—you name it; we have a party in our homes for it. Why? “I have to go to so and so’s party because they came to mine.” “I got invited, so I really ought to go!” “I’ve said I would order because she ordered from the PTA fundraiser.” Perhaps we are using all these parties and cookie exchanges, volunteer opportunities or fundraisers to actually pamper ourselves in a very overwhelming fashion. We want to spend some time with other women, to talk and commiserate, yet wouldn’t it be easier on our schedule and headaches to just admit that we need a break from our lives, our children and our heartaches? And instead of over scheduling the commitments, we would take a little time for ourselves?
Laura Warren, with Texas Parent to Parent, used to tell our support groups that the only way for her to find some respite was to read in the bathroom for five minutes. How true this is for all of us, because we all need a break from time to time. Respite resources are at an all time low, the economy is still in a dot.com dip, gas prices are higher every day, menopause is coming, airport screeners are searching old ladies and making us drink the breast milk out of baby bottles, terrorists, wars, famine, the apocalypse…
Okay, maybe our lives aren’t quite so dramatic, but to a mother of a one-year old with cerebral palsy, or a 4-year-old with autism—a break is just what the doctor ordered (or he would check us into the nearest available institution). With little or no respite programs in most areas of the state, it is up to us to find a way to take care of ourselves, pamper ourselves and our bodies/souls so that our families remain intact, out of traction, emotionally stable so that we don’t have to be on Dr. Phil because our relationships are messed up!
So what to do? Too many of us just struggle on trying to please everyone or being angry with everyone or plunging into a depression. It is exhausting. The answer to our dilemma might be the easiest and yet the hardest thing in the world to do. Say “NO” and Ask for help! I’m sure my friends are now thinking, “Physician, heal thyself!” And yet, if I go for that pedicure today, and think, “Okay, I’ve taken care of myself, that’s all done!” then I have missed the point. Caring for and about myself is a daily task. Unfortunately, it is like losing weight; calories in, calories out—if you take in less and expend more—then voila, you lose weight. If you constantly expend more of yourself than you take in—then voila, you have lost yourself!! Our families cannot operate if we are not rested and cared for. Our children with disabilities, the siblings, our parents and significant others are all affected by our emotional health. So, we don’t need a Pampered Chef party to pamper ourselves. What we need is to give ourselves permission for that five minutes (or longer – but start with just five minutes) in the bathroom by ourselves with our magazine. Then maybe we can find those 30 minutes to go to the gym. We need to go see that movie, get the manicure, listen to the favorite CD, go to yoga or go to church for our own health and well-being. We need to say no when asked to serve on the 10th committee, no to make treats for the class party, no to the organization of the block party. Ask for help from that neighbor who has offered so many times, say yes to help from the church, say yes to the family member who wants to come and help and LET THEM! It is so easy to feel guilty or selfish for not filling every moment caring for our child, family, community, and church, but the long-term debt on your soul for ignoring the care of yourself is larger than any deficit our children may have physically, intellectually or socially. So, here is your excuse for just five minutes; “I must do it, I can do it, I will do it!” But only you can choose to do it for yourself. Choose today to do it for yourself. Just five minutes to start and the future looks brighter already!

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Places to Go, Things to See

By Nancy S. Brach, Austin

One of the biggest joys in my life is my seven-year-old son with autism; but finding the right public setting for us can sometimes be less than a joy. Although our family lives in a world of autism, this IS our society and we must go out among them and interact successfully on some level. “We came, we saw, we conquered” is more like “We came and went, saw and were ogled, and conquered more often than not.”
Our last five years of integrating with the rest of the world has included a number of most helpful and highly recommended personal inclusion attendants. Trained to boldly go out into everyday social situation together with this boy, they did and we now do seek peer interaction for him. “Go forth and see normal” with the aim of (perhaps later) “go forth and be normal.”
Let’s get started. This is Places to Go, Things to See. First, nothing beats physical activity for these kids, and no activity beats swimming. Or moving in that water although you may not even be “really swimming” yet. Great exercise, lots of social opportunity, and unbeatable sensory input of particular value to autistic people. “Big pools,” like some of our Parks and Recreation spots i.e. Dick Nichols in SW Austin, which may seem more intimidating, can actually offer more opportunity for private “space” when the child’s mood becomes over-stimulated, rather than being a smaller more confined area. The first time and each time you and your child visit a public pool, you will both have a chance to relax if you communicate to the friendly lifeguard on duty about your child’s particular behaviors, such as their apparent disregard for a lifeguard’s instruction. Explain to the guard that persons with autism tend to have difficulties with “processing” what the ears hear; that they need more time to think about a simple request. A few helpful clues to “Get the child’s attention first, and then use only a few words” can go a long way towards a successful experience. If the child is not independent in using the pool restroom for changing and showering without incident, a same-sex companion is good planning. Potential problems can be minimized by having it be appropriate to be in the men /women’s changing area with the child. By going to the pool lots of times, and getting that repetition in, just like other things that the child becomes familiar with, and learns the rules of and how to enjoy, swimming will yield a great pay-off.
I have learned it is good to go where you are expected/accepted to have some exuberant behavior, maybe some verbal outbursts of joyful noise or even sporadic blasts of high energy. And for this, there is the toy store! Terra Toys right there on main street Congress Avenue , just south of the Capitol. Nice area for exploring the cool little stores with their many offerings, like a real barbershop with a guy who looks like a real barber, and a fire station to look over at across the street that has never yet, cross your fingers, “startled” us with sirens and stimuli. The stores there have a small town feel. My 4 ½ foot 90-pound son and I have moseyed into some of these places, darted around a few times, while displaying some obviously autistic stuff, and –behold! --no adverse social (or retail snobby nose) reaction! And I have to say, in these situations in Everyday USA for us as their caregivers and defenders, it is welcome, this gift of a stressless everyday everyman experience. Like, yeah, we’re weird, but we are fitting right in kind of thing. (Mind you, fellow parent/gentle reader, the “situation” at those times is NOT out of control, but generally speaking, yes, we are WEIRD. And not ashamed to say so, thank you.)
And so we come to where I tell you about why Terra Toys is a top-pick. Scene: Any child, just has the mind set, firmly, in his or her own uniquely occasionally puzzling way, on having to look at and touch personally the tin toys which are on display in a tall wood and a bit-delicate-looking-glass case. And it’s locked. Hmmmm. Could be a problem. . . Now, if you are at all like this mom, right there you think there has got to be an easier place to manage than this enticing (to your kid) but delicate (potential disaster to YOU) scenario. The Kid in Story does have a bit of the Bull in a China Shop thing. Sigh…. if only….
But lo! The beaming toy store guy appears, armed with the key and an almost unbelievable excitement about handling every last thing in that case, too! Plus he’s equipped with an unbeatable set of play skills and useful toy knowledge. And so he interacts, unbelievably (I already said that) incredibly, beautiful, co-existingly with Kid in