Southwest Pediatrics Medical Home newsletter

Consider these signs and symptoms:

• A child is intolerant of excess movement, experiences car sickness, dislikes playground activities and does not like her head inverted as in somersaults.
• A child doesn't learn left from right for a long time.
• A child craves movement, swinging or rocking.
• A child cannot begin a line of printing at the farthest left margin of his paper - every line appears indented. A child cannot stay on the line when he is writing - his printing or writing drifts upwards or downwards.
• A child cannot easily look up at the chalkboard at school and then down at his paper or book - he or she seems to have trouble refocusing.
• A child is stiff or clumsy in his movements - he may overshoot a chair when sitting down or sit down too hard.
• A child cannot discriminate objects by feeling them (without seeing them).

All of these may be examples of sensory integration dysfunction.

In addition to the symptoms that clearly refer to sight and to feeling, occupational therapists, influenced by the theory of Jean Ayers (late 1960s to 1980s), have added the vestibular and proprioceptive senses to the basic five senses.

Examples above relating to movement, knowing left from right or directionality, and spatial accuracy flow from our vestibular sense. Our vestibular sense is in the inner ear, and provides information about where our bodies are in space, whether we or our environment is moving and whether movement is slow/fast, up/down or angular.

Proprioception is feedback from muscles and joints, telling us where our various body parts are and what they are doing. A clumsy child, who falls or is accident-prone, who has difficulty sitting down smoothly in a chair may have proprioceptive deficits.

Sensory integration dysfunction may be seen in children with developmental  delays/disabilities, signaled by a premature or at-risk birth. Though more research is needed to fully define the role of treatment, sensory integrative therapies can be  considered for children with Autism Spectrum Disorders and learning disabilities who may demonstrate these symptoms.

An occupational therapist who specializes in Sensory Integration will make further distinctions among Sensory Modulation Disorders, Sensory Discrimination Disorders and Sensory-based Motor Disorders.

For more information, see Carol Stock Kranowitz's book, The Out-of-Sync Child.

By Bob Rohloff, MD, pediatrician, CMG-Southwest Pediatrics

This, the second in a four-part series on autism spectrum disorders (ASD), discusses the symptoms of autism and ASD. The first article, which appeared in the previous edition of this newsletter, discussed some of the reasons contributing to the apparent rise in autism spectrum disorders which are now thought to occur in as many as 6 per 1,000 children. The next two newsletters will discuss the diagnosis and treatment of ASD.

The diagnosis of an ASD, which includes autism, Asperger's disorder and pervasive developmental disorder, can be difficult to make early in life because there is a wide range of symptoms and severity levels. For instance, the symptom that is usually recognized first in ASD is speech delay, but it is not present in Asperger's disorder. Speech delay is most often noticed by parents in children 15 to 18 months of age. Problems with social skills which are present in all ASDs are not as obvious as speech delays and may not be noticed by parents and other caregivers until after 2 years of age.

Speech and language delays are the most common early symptoms reported by parents. Often, parents report that there is no speech occurring. At times speech is present but is not actually used to communicate. In these instances speech may be a repetition of another person's words or lines repeated from a favorite TV show or movie. Children with ASD may have "pop-up words" which suddenly appear in their vocabulary, are not used with any clear meaning and then disappear. Some children have "giant words" (such as good job, whatsit and idontknow) which are phrases they have heard frequently and picked up but which are not used to convey meaning.

Social skills refer to a child's ability to share experiences with others in an appropriate manner. These behaviors in infants include smiling and giggling in response to a familiar person, following another person's gaze and looking when a parent points to something. Toddlers will begin to point, at first to request an object and then to share an object or experience. This second type of pointing, called "protodeclarative pointing," is considered to be a very important early sign of healthy language and social skills development. Later, problems with sharing experiences, understanding the emotions of others and being able to figure out what other people are thinking and feeling by the way they act, interferes with forming friendships.

Along with speech delays and social skills problems, children with ASD also demonstrate problems with imaginative play and fail to develop age-appropriate play skills. They may play with toys but not in an imaginative way (spinning the wheels on toy cars but not driving them). They have great difficulty interacting in playgroups and cannot cooperate in the more sophisticated games. This inability to play appropriately makes it challenging for them to form friendships and puts them at risk of being bullied.

Another common symptom of ASD is repetitive or ritualistic behaviors, interests and activities. Repetitive behaviors such as hand flapping, rocking and finger movements are not specific to ASD and may occur in many children with other types of development disorders and also in otherwise normal toddlers. Some children with ASD will become attached to objects like pens, action figures, flashlights and other items rather than teddy bears or favorite blankets. Children with Asperger's disorder will show intense interest and develop expertise in specific topics like dinosaurs or movies and will talk about those topics to the exclusion of all else.

Continuation of playing with specific items or talking about specific subjects and becoming upset if they are redirected is also common in children with ASD and often results in intense tantrums. These tantrums can lead to aggressive behavior towards others or self-injurious behaviors.

As you can see, there are many symptoms that can occur in a child with ASD. The type and severity of the symptoms differ in these children. It is important for physicians and parents to be aware of these symptoms to help make an early diagnosis.

The medical home, which provides comprehensive care, is the ideal place to make the diagnosis of ASD.

New immunization requirements

The Department of Health and Family Services, State of Wisconsin, is now requiring anyone entering grades 6, 9 and 12 to have a Tdap. This is the tetanus, diphtheria and pertussis vaccine recommended for adolescents. Remember the second Varivax (chicken pox) shot is also required for children entering kindergarten and grades 6 and 12.

Flu shot season coming up

Flu shot season is just around the corner. Watch for your mail for a postcard stating flu clinic days and times.

Save time on prescription refills

If you need a prescription refill on medications other than ADHD meds, you could save time by having your pharmacy fax or phone a request to our office.

Meet a staff member

Amy Kastens, RN, BSN - Nursing supervisor at Southwest Pediatrics
"I have two children ages 7 and 9, and they are patients at Southwest Pediatrics"

What is a DPL? Do you have one? Do you need one? Would you like to be one?

By Lori Karcher, BS, District of Greenfield parent liaison and parent of a child with special needs

District Parent Liaisons (DPLs) are parents who have received training about Special Education through the Wisconsin Statewide Parent-Educator Initiative (WSPEI) and who partner with the Director(s) of Education within their district to foster communication with parents who have children in special education. The vision of this initiative is for Wisconsin to develop a statewide network of parents, schools and agencies that enables all parents of children with disabilities to participate meaningfully and equally on IEP teams and in school advisory functions. WSPEI also supports families in the education of their children and supports educators in positive, reciprocal relationships with parents and the community.

Examples of some of the training opportunities that are offered to DPLs are:

• IEP process and product.
• Communication.
• Transition.
• Successful school/family partnerships.
• Families and teachers in problem solving.

As compensation for attending trainings and committing to the volunteer position (a three-year commitment), DPLs receive a stipend through their Cooperative Educational Services Agency (CESA) and WSPEI which are both funded by a grant from the Department of Public Instruction.

By attending these trainings and working with families, teachers and administrators, the DPL strives to create and promote positive relationships and to increase parent/guardian understanding and involvement in special education.

Characteristics of a District Parent Liaison include:

• Being a parent of a child with a disability or someone who has knowledge of special education.
• Good communication and strong interpersonal skills.
• Positive attitude and willingness to promote collaborative relationships between families and schools.
• Ability to maintain confidentiality with students, parents and educators.

Examples of specific ways that a DPL can impact his/her district include:

• Set up a parent resource library for the district. 
• Explore the development of a parent advisory council and, once set up, attend the meetings. 
• Make arrangements for training opportunities for parents and/or educators.
• Write articles for school newsletters or create a district newsletter.
• Provide a resource folder or packet to parents who are new to the special education program in the district.

The role of a DPL is shaped by the specific needs of each district. Perhaps the greatest need is to get pertinent information into the hands of families. This may involve reaching out to parents whose children are in the initial referral stages of the district's special education program and helping them to navigate through their first IEP. Or, it's just being available to listen to the concerns of a parent who could use some guidance from another parent who understands the challenges of raising a child with special needs.

Personally, I applied for and accepted the role of DPL in my district to increase my own knowledge of special education law and expand my knowledge of resources available to our family in order to make our daughter's educational experience the very best it can be. In turn, my hope is that I can utilize that knowledge to not only help our family but to share what I've learned with ANYONE in our community who can benefit from it, parents and educators alike.

Find your Parent Liaison at:
www.dpi.wi.gov/sped/par_liaisn.html

For more information contact:
Mary Skadahl, WSPEI State Project Coordinator
Phone: (Toll-free) 1 (877) 844-4925, (cell) (715) 829-8932
E-mail: marys@cesa12.k12.wi.us

Or, locally, contact:
Cheri Sylla, CESA #1 Parent, Liaison Coordinator
Phone: (262) 787-9565
E-mail: csylla@cesa1.k12.wi.us

Kimberly Gunn is a homemaker and mother of 3-1/2 year-old twin daughters, with a strong desire to assist other families with her personal knowledge of feeding, heart and cranial special needs. She has been a Medical Home Advisory Committee member since January 2008.

By Kimberly Gunn

Starting a family is an exciting experience that is filled with many uncharted territories.  One always assumes they will receive a perfectly healthy baby, so having a child with special needs can be overwhelming. Worrying about their medical needs, growth, motor skills and mental development can make a parent feel they are in a whirlwind.

After a month long NICU (Neonatal Intensive Care Unit) experience with twins, followed by one heart and two cranial surgeries, accompanied by a feeding problem, I can sympathize with parents of a child with special needs. The stress and worry of finding out how to help your child, and feeling comfortable with the physicians and other medial specialists is mind boggling.

But through this experience I have learned many things about myself, my marriage and my inner spirit. Patience was never a strong point of mine but I have grown to better accept gains as they come. It may not be the timetable or agenda I want followed, but it's  what is best for my daughter. After much debate with my husband over which cranial surgery was best suited for our daughter, I learned what an excellent team we are together. We both used our strengths to advocate and research the best care for our children. Overcoming medical obstacles and evaluating our daughter's care has made our marriage stronger. Our desire and goals for our children are what come first for both of us. Keeping a marriage intact through medical dilemmas can be tough, but all children deserve to see their parents united through challenging times.

Faith in God has allowed me to stay sane through this 3-1/2 year medical journey. When I look at the things I worried about prior to having a child with special needs I am  embarrassed. My prayers are different from three years ago. I no longer pray that I will figure out why my daughter is constantly vomiting and will not drink a bottle, nor if the surgeon we chose is best suited for her condition. Now I pray for her to continue to progress with her eating in an effort to eventually remove her feeding tube. And even though they are only 3-1/2 years old, I pray for wonderful son-in-laws for my daughters. My husband thinks I am jumping the gun with that prayer; I disagree!

By Rene' Petritis, RN, CMG-Southwest

At Southwest Pediatrics, we want our families to be comfortable calling our office, whether the call is to schedule appointments or to get medical advice from our nurses or pediatricians. It is important to know that there are "heavy call volume times" during the clinic hours (usually 8 a.m.-10 a.m. and 4 p.m.-5 p.m.) with longer wait times possible during those hours. Calls generally can be answered more quickly during other times of the day. If your child needs a same-day sick appointment, it is best to call earlier in the day to schedule an appointment. However, if you are calling to schedule a future physical exam or immunizations, to request a medication refill or you have a general question for our staff, it may be less stressful to call after 10 a.m. when the call volume is lighter.

To provide quality care to our children and youth with special health care needs, we ask that families assist us by providing information about their child when calling to schedule an appointment or to discuss their child's health. Parents know their children better than anyone and need to trust their "gut instinct" if they suspect their child is ill or injured. Nonverbal children are often difficult to read, but parents usually know better than anyone when their child is ill or uncomfortable by the signs they display. Sometimes parents just need reassurance that their home treatment is appropriate.

Following are a few tips to remember when calling our office:

• Remind our staff of your child's medical condition. Currently, we are working on a system to identify children with special health care needs at the time a call is taken, but you can assist us by informing the nurse about any chronic conditions. This also will assist us in getting your child into the office in a more timely manner and allotting the appropriate amount of time for the visit.
• Let us know if there are any special accommodations that we can provide to make your visit easier and more productive (such as transportation, a translator or an interpreter).
• If your child was recently seen in an emergency room or urgent care center, let us know. Your pediatrician may need to do a follow-up exam or document the care received in your child's chart.
• When attending well child visits, it is helpful to come with questions or concerns written down so you don't forget to ask them. If you have many questions and concerns that may require extra time during the visit, please alert the scheduler at the time you make the appointment.
• Sick visits should be focused on the current illness. Keep a timeline of when symptoms started to help your doctor better understand and treat your child. If you have other long-standing concerns about your child that need to be addressed, we may set up a longer future appointment.
• We understand that a trip to the pediatrician may be stressful. We try very hard to minimize the amount of time you spend waiting for the physician. Unfortunately, circumstances arise that cause appointments to run behind schedule. It may be best to call before your visit to see if the doctor is running on time. You may request that your child be taken right back to an exam room to avoid exposure in the waiting room.

Please tell us what we can do to make your visit as comfortable and productive as possible. After all, this is your Medical Home and in addition to providing you the best possible medical care, your comfort and convenience are also important to us. Let us know how we can help.

Rene' Petritis is the mother of Matthew, age 17, and Melissa, age 19.

By Chris Schwake, MD, pediatrician, CMG-Southwest Pediatrics

Guardianship: This is the second article in a series regarding life transitions for children and youth with special health care needs (CYSHCN).

As parents, we maintain a certain level of responsibility for our children as they grow into adulthood. For parents of children and youth with special health care needs who are  unable to make informed decisions regarding their health care, finances, or legal issues, that responsibility extends to identifying a guardian who will act in the best interests of their children and provide consent in those situations.

Prior to a guardian being identified, the level of competence of the involved youth must be determined by the court system through the advice of a medical expert (physician or psychologist). If one is identified as being incompetent (unable to make decisions for oneÕs self), an individual can request the court to reconsider the previous decision after re-evaluation by a medical expert.

Once court-designated incompetence has been established, there are different forms of guardianship that may be legally assigned: full, limited, standby, successor and coguardianship. Hearings not involving residential placement occur within 90 days from filing, while situations involving protective placement or assisted living must be heard within 60 days (www.cwag.org/legal).

Full guardianship provides unlimited decision making capabilities for the person assuming this role for the involved youth, or ward as referred to by the court. This designation is made only in situations where young adults are unable to realistically care for themselves or their personal property. Limited guardianship allows for the ward in question to maintain more rights based on his/her individual abilities.

As implied by the name, a Standby Guardian has the same duties as the appointed guardian, but will only assume those responsibilities if the appointed guardian is unable to fulfill his/her duties. If a standby is not identified at the initial guardianship hearing, then a Successor Guardian will have to be identified at a future hearing if the original guardian is unable to continue in that role.

Co-guardianship is used when two people (spouses or parents of an adult with special health/developmental needs) are appointed as guardian for the same young adult. Cooperation is essential with this form of guardianship because delays in health care delivery can occur if the parties with joint responsibilities are unable to make a mutual decision.

When a guardian is identified, a power of attorney (POA) document for health care is not necessary. However, a previously created POA will supersede the decision making abilities of the guardian if the involved young adult had completed such a document when he/she had an appropriate level of competence and the court has ordered that the POA remain in full force and effect.

Determining the competence of young adults and the subsequent designation of a guardian can by trying on families who have not had prior experience with navigating the legal system. The Coalition of Wisconsin Aging Groups (www.cwag.org) and the Southeast Regional Center of CYSHCN (www.southeastregionalcenter.org) provide additional information and community resources to assist families through this process.

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