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A TEACHER’S GUIDE TO HYDROCEPHALUS

ATEACHER SGUIDETOHYDROCEPHALUSnnForeword.. 3 Introduction.. 51:What Is HYDROCEPHALUS ?.. 7 What Causes HYDROCEPHALUS ? ..7 How Is It Treated? ..7 What Are the Effects of HYDROCEPHALUS ? ..8 Conclusion ..82: Physical Problems Associated with HYDROCEPHALUS .. 9 Shunt Problems ..9 Precocious Puberty ..10 Headaches ..10 Seizures ..10 Hand/Eye Coordination ..103: learning disabilities .. 11 Nonverbal learning Disorder ..12 Motor Skills ..12 Organizational ..14 Attention ..14 Verbal Abilities ..14 Strategies ..144: Social and Emotional Issues.. 17 Social Issues ..18 Strategies ..195: Moving Forward, Making a Difference:Additional Resources and Strategies.. Room teacher /Resource Specialist ..21 Students ..22 Other Resources ..22 Conclusion ..22 AppendixA: About IEPs ..23B: Consensus Statement on Physical Activitiesfor Children with : Signs and Symptoms of Shunt Malfunction ..25D:Additional Resources ..26 ContentsAcknowledgmentsWe extend a heartfelt thank you to all the parents, teachers, doctorsand education professionals who reviewed a draft of this bookletand/or answered our questions.

6 Andrew was evaluated for learning disabilities when he was very young, around kindergarten. He had an IEP, but then went on to perform ‘too well’ to continue to qualify for special services.

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Transcription of A TEACHER’S GUIDE TO HYDROCEPHALUS

1 ATEACHER SGUIDETOHYDROCEPHALUSnnForeword.. 3 Introduction.. 51:What Is HYDROCEPHALUS ?.. 7 What Causes HYDROCEPHALUS ? ..7 How Is It Treated? ..7 What Are the Effects of HYDROCEPHALUS ? ..8 Conclusion ..82: Physical Problems Associated with HYDROCEPHALUS .. 9 Shunt Problems ..9 Precocious Puberty ..10 Headaches ..10 Seizures ..10 Hand/Eye Coordination ..103: learning disabilities .. 11 Nonverbal learning Disorder ..12 Motor Skills ..12 Organizational ..14 Attention ..14 Verbal Abilities ..14 Strategies ..144: Social and Emotional Issues.. 17 Social Issues ..18 Strategies ..195: Moving Forward, Making a Difference:Additional Resources and Strategies.. Room teacher /Resource Specialist ..21 Students ..22 Other Resources ..22 Conclusion ..22 AppendixA: About IEPs ..23B: Consensus Statement on Physical Activitiesfor Children with : Signs and Symptoms of Shunt Malfunction ..25D:Additional Resources ..26 ContentsAcknowledgmentsWe extend a heartfelt thank you to all the parents, teachers, doctorsand education professionals who reviewed a draft of this bookletand/or answered our questions.

2 special thanks to Cindy Bader, DebbyBuffa, Jana Dransfield, Kathy Farmer, Joseph Feldman (CASE), PaulaFrench, Jennifer and Eric Henerlau, Amy Herrington, Catherine LyethReddy, Chris Riccio, and Thomas Sullivan, booklet was made possible by funds contributed by the Cali-fornia Casualty : Rachel FudgeAssistant Editor: Pip MarksThe following references were consulted in the preparation of thisbooklet:About HYDROCEPHALUS A Book for Families, HYDROCEPHALUS Association HYDROCEPHALUS , by J. M. Fletcher, et al., in K. , et al.,Pedi-atric Neuropsychology: Research, Theory, and Practice(NewYork: Guilford Press, 1999)National Information Center for Children and Youth with disabilities , learning Disorders on the Web, Nonverbal learning Disorders, by Sue Thompson, , LD Online, Nonverbal learning Disorder Syndrome, Fact Sheet, HydrocephalusAssociation Social Skills Development in Children with HYDROCEPHALUS , FactSheet, HYDROCEPHALUS AssociationSpecial Education Rights and Responsibilities,Community Alliancefor special Education (CASE) and Protection and Advocacy, Inc.

3 (PAI)Students with Spina Bifida and/or HYDROCEPHALUS : A GUIDE forEducators, Spina Bifida and HYDROCEPHALUS Association of Canada 2002 HYDROCEPHALUS Association, San Francisco, CaliforniaHydrocephalus Association870 Market Street, Suite 705 San Francisco, CA 94102 Tel 415-732-7040 Fax booklet about HYDROCEPHALUS is written for teachers inthe hope that the information will give you a better under-standing of this lifelong condition and how it can affect a stu-dent s ability to learn and mature intellectually, socially a teacher , you are not just an educator you are a rolemodel, a mentor and a GUIDE . Having a student with hydro-cephalus in your class can be a challenge, but it also presents aspecial opportunity. Most children with HYDROCEPHALUS havenormal or above-average intelligence and are eager and willingto learn and succeed. It is not uncommon, however, for themto have learning disabilities that have the potential to hindertheir overall development if not recognized and remediated ina timely affects about one in every 500 to 1,000 chil-dren born.

4 It is caused by a wide variety of medical problems,and the circumstances of each child s condition are is no standard profile of the child with HYDROCEPHALUS just as there is no standard profile of the typical child. We will discuss some of the common challenges faced bymany children with HYDROCEPHALUS , but it is important toremember that some children will face more serious chal-lenges, while others will have far fewer problems. A discussionof more severely affected children and their special -educationneeds is beyond the scope of this booklet, which primarily dis-cusses the needs and challenges of children in hope that this booklet will give you a better insight intohow HYDROCEPHALUS can affect a child s learning style andsocial and emotional growth; provide you with strategies torecognize and help remediate areas of weakness and vulnera-bility; and empower you to challenge all of your students, espe-cially those with special needs, to fulfill their is sometimes referred to as an invisible disabil-ity meaning that the disability is not immediately visuallyapparent.

5 Many people with HYDROCEPHALUS look normal. Underneath a seemingly typical exterior, however, there lies ahost of potential physical, emotional and intellectual most common of these are learning disabilities , poorlydeveloped social skills and some degree of loss of fine or grossmotor children with HYDROCEPHALUS have undergone traumat-ic experiences, often at a very young age: multiple surgeries,frequent hospital stays, lengthy rehabilitation and countlessdoctor visits and medical tests. Starting school for the first timeor returning to school after a hospital stay can be an extrachallenge. It can be scary not just for the child with hydro-cephalus but also for his or her peers, who often do not knowhow to express their own fears and in turn canresult in peer rejection, loneliness and with HYDROCEPHALUS are often characterized asbright and highly often have a lot to say and arefriendly toward their yet this very sociability andintelligence can mask some deeper theymay be very verbal, their conversation may have little depth orlack may befriend adults and childrenyounger than they are.

6 Often, they do not possess the samenuanced social skills as their parents and teachers may be blinded by displays ofverbal intelligence, especially in the younger grades, not realiz-ing that learning disabilities often do not become apparentuntil later on, in the middle grades. Sometimes, what appear tobe behavioral issues can be manifestations of learning disabili-ties. A student who appears to be not applying him- or herself,or simply not trying, may in fact be struggling very hard tokeep it s not simply a matter of working harder orstudying more: it s a matter of learning howto work and studyin order to learn and retain knowledge and with HYDROCEPHALUS are always at risk of recurring medical problems, new or changing learning dis-abilities, and social and emotional issues. As their bodieschange and their minds develop, new physical, psychologicaland neurological issues may may develop more, notfewer, problems in school.

7 Any changes in their skills, capabili-5 How to Read This BookletThroughout the book, we usequotes from children with hydro-cephalus, their parents and are also sidebars topoint you to further informationon a particular subject, or to anappendix in this Andrew was evaluated forlearning disabilities when he wasvery young, around had an IEP, but then went onto perform too well to continueto qualify for special he started having trou-ble again in the fifth grade, wewere all caught by surprise. ties and emotional makeup must therefore be assessed in lightof their with early intervention and remediation, many of thesedifficulties can be minimized. Early testing is crucial, as areperiodic follow-ups and ongoing evaluation. A host of well-established strategies can be put into place, including physical/occupational therapy to improve coordination and motorskills, resource classes to improve study skills and tailoredlearning strategies to combat learning who have always done well in school so well, infact, that they may never have had an IEP or neuropsychologi-cal testing are perhaps most at risk, as the warning signs maynot be picked up as quickly.

8 Still other children with hydro-cephalus will face far greater obstacles and require a higherlevel of interventional a whole, children with HYDROCEPHALUS are eager andwilling to learn and grow but they are often frustrated bytheir troubles in keeping up with their peers and pleasingtheir teachers and parents. With your help, they can achievegreat is the abnormal accumulation of cerebrospinalfluid (CSF) within cavities called ventricles inside the is produced in the ventricles, circulates through the ven-tricular system and is absorbed into the bloodstream. Hydro-cephalus occurs when there is an imbalance between theamount of CSF that is produced and the rate at which it the CSF builds up, it causes the ventricles toenlarge and pressure inside the head to Causes HYDROCEPHALUS ? HYDROCEPHALUS can be present at birth (congenital) oracquired at any time during a person s life as a result of hemor-rhage, meningitis, head trauma, tumors or cysts.

9 Congenitalhydrocephalus frequently occurs in association with other con-ditions, such as spina bifida or Dandy Walker Is It Treated?The most common treatment for HYDROCEPHALUS is a surgicalprocedure, performed by a neurosurgeon, in which a tubecalled a shunt is placed into the child s body. The shunt chan-nels the flow of fluid away from the brain or spinal cord intoanother part of the body, where the fluid can be absorbed andtransported to the reduces pressure on thebrain, which could, if left untreated, result in permanent braindamage or are extremely durable, and rarely fail or malfunctiondue to external causes such as falls or bumps. Almost all chil-dren with HYDROCEPHALUS can and should participate fully in allschool activities, including physical education and , because shunts are mechanical devices, theysometimes malfunction and, less frequently, become infect-ed in fact, most people who have shunts will require shuntrevision at some point in their concise list of signs andsymptoms of a shunt malfunction or infection appears inAppendix you would like a more in-depthdescription of HYDROCEPHALUS andassociated conditions, ask yourstudent s parents for a copy ofour bookletAbout Hydroceph-alus A Book for Appendix D for a list of addi-tional Is HYDROCEPHALUS ?

10 See Appendix B for a statementabout participation in sports fromthe HYDROCEPHALUS Association smedical advisory VentriculostomyWhile shunting is by far the mostcommon treatment for hydro-cephalus, a new procedure calledendoscopic third ventriculostomy(ETV) is gaining popularity. Thesurgery involves making a tinyhole in the third ventricle of thebrain to allow the flow of spinalfluid into another area of thebrain for absorption, thus elimi-nating the need for a , long-term successrates of ETV are still unknown,and as with shunted hydroceph-alus, complications can arise atany time. We at the HydrocephalusAssociation strongly encouragechildren with HYDROCEPHALUS whohave had ETVs to carry a medicalID card identifying them as havingnon-shunted HYDROCEPHALUS . What Are the Effects of HYDROCEPHALUS ?Pressure on the brain can result in short- or long-term effects,including impaired vision, headaches, hearing loss, muscleweakness, seizure disorders and hormonal imbalances.


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