Southwest Pediatrics Medical Home newsletter

October 2009 

TRANSITIONS

BY CHRIS SCHWAKE, MD, PEDIATRICIAN, CMG-SOUTHWEST PEDIATRICS

Transitioning to an Adult Health Care Provider - Fourth article in a series regarding life transitions for Children and Youth with Special Health Care Needs (CYSHCN)

One of the most important and scary transitions that adolescents with special health care needs and their parents face is transferring care from their pediatrician to an adult primary care provider. Given the extremely close relationship that most families of CYSHCN develop with their pediatricians, this change is quite emotional. It is the one transition that often is delayed until the last possible moment. Given their commitment to their families of CYSHCN, pediatricians frequently are reluctant to transition such children to an adult provider until it is absolutely necessary, often not until those children have become adults in the mid-20s.

One aspect of this transition is identifying who will be the adult provider to continue on with the health care partnership. Asking your pediatrician for recommendations of potential providers is a common first step. While your pediatrician may have suggestions of physicians to consider, they may not know if those adult providers are covered by your family's insurance or if those providers are currently accepting patients, specifically those with special health care needs.

If you are comfortable with the physician providing your own health care, consider asking that provider if he or she is currently accepting patients and if he or she is comfortable with caring for patients with special health care needs. If so, your personal doctor already has a relationship with your family which can ease a difficult transition.

Accessing community resources is another way to address this transition. The Southeast Regional Center for Children and Youth with Special health Care Needs can help you identify possible providers within your area as well as connect your family to other essential resources. They provide support for all the transitions that your child currently is experiencing and will be in the future. For more information, visit southeastregionalcenter.org or call (414) 266-6333.

Given that finding an adult provider can be a challenging process, it is wise to start the search long before it is time for your child to leave your pediatrician's office, perhaps when he or she is between 11 and 13 years old, or even earlier if you are comfortable.

Once a provider is identified, it is helpful to involve the adult provider in the health care decisions that are being made with your child's pediatrician for an extended period of time. Co-managing of your child's health care can make the ultimate transition to the adult physician being the sole care provider much more comfortable for all those involved.

Creating a summary of your child's health history and current health management with your pediatrician is another resource to ease the transition. A summary can provide a clear piece of communication that can be shared by all those involved with your child's health care. Ask your pediatrician about how to create such a document if you are interested. Similar to searching for a provider, a health information summary should be started as soon as possible. Ideally, you should begin when a child's special health care needs are identified and update the document over time, as needed.

Transitioning your child to an adult health care provider can seem like an overwhelming task. However, when pediatricians and parents start talking about and preparing for the change at the earliest age possible, the shift can be a positive step in the larger transition from adolescence into adulthood.

(Reprinted from a previous issue).

CLINIC NOTES

BY AMY KASTENS, RN, CMG-SOUTHWEST PEDIATRICS AND RENEE PETRITIS, RN, CMG-SOUTHWEST PEDIATRICS

Well child/well baby Section

Have you noticed the well child/well baby section of Southwest Pediatrics' waiting room? This is a partitioned area with retractable walls that serves as a waiting area for new babies and healthy children. Our goal is to keep children with possible contagious illnesses away from the healthy children while waiting to see the Pediatrician or nurse. If a child has a suspicious rash, cough or illness, or anxiety about the waiting area, we try to have him or her enter our clinic through the back door or put them into a room immediately. If your child is being seen for an illness, please keep him or her away from other children by having them sit next to you or on your lap.

Flu Season Updates

Flu vaccines are now being given during well child visits. If your child has a well child visit scheduled, request the flu vaccine during this visit. A short questionnaire will need to be completed prior to the vaccine being given. If your child does not have an upcoming well child visit, please check our Web site at southwest-pediatrics.com for upcoming flu clinics and call our office at (262) 789-6020 for an appointment.

H1N1 Vaccine

We expect to receive the H1N1 vaccine sometime in mid to late October. Please check out our Web site for updated information. Also, you may refer to the Centers for Disease Control Web site at cdc.gov/h1n1 for important general health information.

SEXUALITY EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES

BY TERRI COUWENHOVEN, MS, AASECT SEXUALITY EDUCATOR

Whether you want to be or not, you are your child's primary sexuality educator. That means you are the initial and most frequent influencer on messages your child receives regarding sexuality. Most of the research on sexuality and people with developmental disabilities continues to show us there are huge information gaps in this population and much work is needed. Parents can play a key role in helping their child grow up understanding sexuality. For most parents, discussing sexuality issues is difficult. When your child has an intellectual disability, the task is significantly more challenging. Parents often ask me, "How can I teach so my child will understand?" "What do they need to know?" And, "When do you start addressing sexuality issues when your child has a disability?"

What do I teach and when?

Sexuality education is more than understanding the how babies are made. It involves teaching your child about his or her body and feelings, how to get along with others in different relationships as well as appropriate boundaries in those relationships. Helping your child feel good about who he or she is an essential foundation for healthy sexuality. It comes from living in a world where he or she is valued and respected as a human being.

Topics that support healthy sexuality include:

• Learning about the body involves identifying correct names of body parts (including genitals), understanding societal rules for the private body parts, how to care for the body, body changes that accompany puberty, functions of the reproductive systems and reproductive health care.

• Teaching about privacy means helping your child distinguish between public and private and helping him or her understand social rules related to the body such as modesty, talking and touching. Ensuring your child has access to privacy is an important piece of this as well.

• Social skills are rules for interacting with others. Children who understand these rules have an easier time developing and maintaining connections with others.

• Understanding relationships involves being able to identify the different types of relationships that exist and appropriate boundaries within those relationships. In adolescence and adulthood, these include dating and romantic relationships and rights and responsibilities associated with sexual relationships.

• Exploitation prevention means understanding body rights, as well as being able to identify exploitation and what to do if it happens.

Bits and pieces of these topics can be introduced throughout your child's life. Your child's developmental age is helpful for determining how the information needs to be adapted. For example, your child's reading level and expressive and receptive language abilities, can help you determine ways the sexuality information may need to be modified. To determine when these topics should be introduced, I recommend you use same-aged, typically developing peers as a guide. For example, your child should learn about puberty at around the same time their same-aged peers are learning about puberty. Thinking of your child can help him or her develop and mature as sexual human beings.

How do I teach so my child will understand?

As a parent, you are the expert on how your child learns. Think of a successful learning experience your child has had understanding another concept or skill. What teaching strategies were used? What made the concept understandable for your child? Most of the time those same teaching strategies can be applied to learning and understanding sexuality. 

Using words exclusively to explain things is the least effective teaching technique. (I refer to this as telling vs. teaching.)

Here are some common teaching techniques used with individuals with intellectual disabilities that can improve his or her comprehension:

• Use pictures or other multi-sensory techniques. Offering your child experiences that involve the senses are more likely to enhance your child's understanding. For example, in addition to hearing a verbal explanation, your child also will need to see, touch or participate in the motor movements that will help them to develop the skill you are trying to teach. Use pictures, videos, role-playing and/or demonstrations to teach techniques that involve the senses. For example, if you're trying to teach your daughter how to manage menstruation, demonstrate putting on a pad then let her practice opening a pad and putting it on her own underwear.

• Use simple, unsophisticated language. Many parents are uncomfortable discussing sexuality and get anxious and uncomfortable. Some use big words and long, detailed explanations. As a parent, you're likely familiar with the terms your child will understand. If you're not sure, ask him or her if they understand the words you're using. Sometimes slang terms can be useful as you introduce sexuality concepts because they're terms peers often use. Usually, the simplest and most basic explanations are most effective.

• Use repetition and reinforcement over time. One-time sex talks are ineffective for most of us, with or without a disability. Understanding our sexuality is a lifelong process that evolves out of learning from and experiencing situations over time. Individuals with intellectual disabilities often have limited language and don't ask questions. Usually information about sexuality has to be introduced in creative ways throughout his or her life. Use the richness of life to look for teachable moments that allow you to introduce sexuality issues. For example, the concept of privacy can be introduced during toilet training. You can say, "Going to the bathroom is private, let's close the door. Closing the door makes a room private."

• Use this language early in your child's life and then repeat and reinforce later when you are teaching showering and bathing techniques, menstrual management, or addressing issues related to masturbation such as: "Touching your private parts is private. Your private place here at home is _________ ."

• Sharing factual information in understandable ways early on can be an opportunity to help your child feel good about their body and build a foundation for positive interactions as they grow older.

Terri Couwenhoven, MS, is an AASECT certified sex educator. She is a clinic coordinator for the Down Syndrome Clinic at Children's Hospital of Wisconsin in Milwaukee. When she is not at the clinic she conducts workshops for students with intellectual disabilities, their parents and the professionals who support them.

For more detailed information on this topic, check out Terri's most recent book, Teaching Children with Down Syndrome About their Bodies, Boundaries and Sexuality: A Guide for Parents and Professionals. The book is available at woodbinehouse.com or amazon.com.

INTERNET SAFETY GUIDE

BY MELISSA SCHNEIDER, DEPUTY LIBRARY DIRECTOR AND HEAD OF YOUTH SERVICES, NEW BERLIN PUBLIC LIBRARY

Earlier this year, officers Tony Pine and Paul Kaye presented Internet Safety Programs for parents at several New Berlin public schools and at the New Berlin Public Library.

The police department provides useful tips and resources for parents on keeping their children safe in the online world. Here are some online resources for parents to educate themselves on online predators and sexual predators:

Web sites

• netsmartz.org
• safetyclicks.com
• wiredsafety.org
• getnetwise.org
• missingkids.com/cybertip
• cybertipline.com
• netlingo.com
• wiredkids.com
• pauseparentplay.org
• urbandictionary.com
• internetsuperheroes.org/cyberbullying/

Publications:

• Safety Clicks Basics to Parental Controls
  safetyclicks.com/2008/07/23/parental-controls-basics/
• A Parent's Guide to Internet Safety
  fbi.gov/publications/pguide/pguide.htm

Additional resources:

• missingkids.com - The National Center for Missing and Exploited Children.
• safekids.com - Hosted by Lawrence Magid, columnist for the Los Angeles Times.
• safeteens.com - Hosted by Lawrence Magid, columnist for the Los Angeles Times.
• bpssoft.com/PowerTools/pt_comp.htm - A tool AOL uses that saves instant messages your child receives as a simple document on the hard drive so you can open later and read it.
• securitysoft.com - Internet filtering software that filters out sexually explicit material.
• webroot.com/childsafe1.htm - Monitoring utility that can block Web sites, capture screen shots and log keystrokes.
• kids.mcafee.com - Application that features different access levels, Web site blocking, content filtering, and information protection.
• danesheriff.com - Official Web site of the Dane County (Wis.) Sheriff's Office. Look for the cybercrime link.

Printed resources from the Youth Services Reference Desk at the New Berlin Public Library from the New Berlin Police Department:

• What Should You Do If You Suspect Your Child is Communicating with a Sexual Predator Online?
• What Can You Do To Minimize the Chances of an Online Predator Victimizing Your Child?
• Tips For Parents: What Are the Signs Your Child Might Be At Risk Online?
• Information For Children: General Risks and Risks by Area (The Web; Chat Rooms, etc.)
• My Rules For Online Safety: Parent/Child pledge sheet
• How to Use Facebook: A Guide for Parents
• How to Use MySpace.com: A Guide for Parents
• Checklist for Cyber-Communications

WEST ALLIS SCHOOL PROGRAMS SERVE POST-HIGH SCHOOL ADULTS

BY BOB ROHLOFF, MD, PEDIATRICIAN, CMG-SOUTHWEST PEDIATRICS

Many young adults with special needs are at risk of being left with nothing to do and nowhere to go after graduating from high school.  Not having an opportunity to socialize and be involved in structured activities can be frustrating and difficult.  There's one community resource that provides activities and socialization after high school for youth with special needs in West Allis.

The West Allis/West Milwaukee School District and the West Allis/West Milwaukee Recreation Department have partnered to provide a transition program for children and adults called the Community-based Transition Program. The program is based at Irving Elementary School's Field House. The school district works with adults who are younger than 21. The recreation department works with adults who are older than 18 and have completed public education. Participants privately pay for recreation education. The two groups function as one, according to Jackie Jacoby, a Community-based Transition Program teacher at the school. "The program does not just function to provide a social outlet," she said. "The mission of the program is to provide experiences based on individual needs." The program works to develop functional independence in the areas of daily living, personal and social interaction, leisure and recreation activities, and vocational skills.

Many activities are planned for the group such as work experience visits, grocery shopping and other community-based activities and instruction. Participants also spend Thursdays at the Southwest YMCA working on health, fitness and personal care skills. In addition, the group goes on bowling outings and visits area restaurants on a monthly basis, according to Jacoby. In addition, during the summer, the recreation department hosts a summer camp for children, youth and adults with special needs.

During the school year, adults with special needs can be involved in the school program for $15 per month. Additional fees cover costs for lunches, supplies, bowling and YMCA programs. Participation can be for any number of days during the school week. The program operates weekdays from 9 a.m. until 2 p.m. 

Residency in West Allis or West Milwaukee is not required. An individual must be independent in daily care to qualify. For more information or to sign up for the transition programs, call the West Allis/West Milwaukee Recreation Department at (414) 604-4900.

AREA ORGANIZATIONS AVAILABLE TO ASSIST FAMILIES

ARC Milwaukee
arcmilwaukee.org
ARC Milwaukee provides advocacy and resources for families of children with developmental disabilities. A full spectrum of support for individuals of every age, ARC offers a lifetime of support to individuals and their families through advocacy, case management, the Trust Program, corporate guardianship and the Resource and Training Center.

Easter Seals of Southeastern Wisconsin
wi-se.easterseals.com
Easter Seals of Southeastern Wisconsin offers respite and camp activities, early childhood and autism programs. Easter Seals has been growing for 75 years to touch the lives of more individuals with disabilities and their families. They offer programs serving children and adults throughout their life span including autism services, birth-to-three early intervention services, inclusive after-school programs, adult day programs and recreation summer respite camps, guardianship and long-term support service coordination.

Milwaukee Center for Independence (MCFI)
www.mcfi.net
Milwaukee Center for Independence provides a variety of services to assist individuals with special needs and their families to better live and work in the community. Participant lifespan services include birth-to-three early intervention services, adult day programs and recreation, long-term support service coordination, case management, home care, mental health and more. 

CHARACTERS WITH SPECIAL NEEDS: A BOOK LIST

BY MICHELLE NEUBAUER, YOUTH SERVICES LIBRARIAN, NEW BERLIN PUBLIC LIBRARY

• Al Capone Does My Shirts by Gennifer Choldenko (Autism)
  A 12-year-old boy named Moose moves to Alcatraz Island in 1935 when guards' families were housed there. He contends with his extraordinary new environment in addition to life with his autistic sister.
• Anything but Typical by Nora Raleigh Baskin (Autism)
  Jason, a 12-year-old autistic boy, wants to become a writer He relates what his life is like as he tries to make sense of this world.
• The Curious Incident of the Dog in the Night-time by Mark Haddon (Autism)
  Despite his overwhelming fear on interacting with people, Christopher, a mathematically-gifted, autistic 15-year-old boy, decides to investigate the murder of a neighbor's dog and uncovers secret information about his mother.
• Episodes: My Life As I See It by Blaze Ginsberg (Autism)
  Episodes is a memoir like no other. Debut writer, Blaze Ginsberg, offers a unique perspective on his life as a highly functioning autistic 21-year-old. Inspired by the format of the Internet Movie Database, Blaze organizes his life events as a collection of episodes. Some episodes are still running, some are in syndication and some have sadly come to an end.
• Freak the Mighty by Rodman Philbrick
  At the beginning of eighth grade, learning disabled Max and his new friend Freak, whose birth defect has affected his body but not his brilliant mind, find that when they combine forces they make a powerful team.
• The Game of My Life: A True Story of Challenge, Triumph and Growing Up Autistic by Jason McElwain (Autism)
  In his own words, this is the incredible true story of a high school student's determination to triumph against the challenges of autism and against his opponents on the basketball court. 
• Joey Pigza Swallowed the Key by Jack Gantos (Attention-deficit/hyperactivity disorder)
  To the constant disappointment of his mother and his teachers, Joey has trouble paying attention or controlling his mood swings when his prescription medications wear off and he starts getting worked up and acting wired.
• Marcelo in the Real World by Francisco X. Strork (Asperger's syndrome)
  Marcelo Sandoval, a 17-year-old boy on the high-functioning end of the autistic spectrum, faces new challenges, including romance and injustice, when he goes to work for his father in the mailroom of a corporate law firm.
• Niagra Falls, or Does It? by Henry Winkler (Dyslexia)
  Fourth-graders Hank, Ashley and Frankie are excitedly preparing for a magic show at the Rock 'N Bowl when Hank's creative alternative to an English essay lands him in detention and grounded the week of the show. First book in the "Hank Zipzer" series.
• Quit It by Marcia Byalick (Tourette syndrome)
  Diagnosed with a neurological disorder that causes uncontrollable tics, such as coughing and head jerking, sixth-grader Carrie must cope with the embarrassment and strain of various reactions from family, friends and strangers.
• Radiance Descending by Paula Fox (Down syndrome)
  When he sees all the attention which his parents and neighbors give to Jacob, 11-year-old Paul struggles with his feelings toward his younger brother who has Down syndrome.
• Rules by Cynthia Lord (Autism)
  Frustrated at life with an autistic brother, 12-year-old Catherine longs for a normal existence but her world is further complicated by a friendship with a young paraplegic.
• Stuck in Neutral by Terry Trueman (Cerebral palsy)
  Fourteen-year-old Shawn McDaniel, who suffers from severe cerebral palsy and cannot function, relates his perceptions of his life, family and condition, especially as he believes his father is planning to kill him.
• Total Constant Order by Crissa-Jean Chappell (Obsessive compulsive disorder)
  Resentful and upset when her family moves from Vermont to Miami and her parents' fighting escalates, high school student Fin develops OCD and becomes consumed with numbers, counting, irrational worrying and avoiding germs.

Created from suggestions found in School Library Journal (August, 2009), ATN reading lists (atn-reading-lists.wikispaces.com/ ); and Worchester Public Library, Worcester, Mass. (librarybooklists.org/fiction/ya/yadiverse).