ExtraordinaryJust like our Children

Medicating Your Child

ADHD

504 Plan vs. IEP

Autism

Testing Our Children

For the Caregivers

Positives and Negatives pg 8

Understanding the diagnosis pg 4

What you need to know pg 12

Important Information pg 18

What teachers have to say pg 22

The M.O.R.G.A.N. Project pg 26

November/December Edition #1

Feature Articles

Contents

Our DepartmentsMedicating Your Child Activities

Nutrition Information

Education

What Experts have to Say

Other Tips

ADHD

504 Plan vs. IEP

Autism

Testing our Children

For the Caregivers

Positives and Negatives..............................................................8For children with Sensory Integration Disorder...................31

Gluten Free Dairy Free (GFDF).........................................33

Information on School Therapy...............................................35

Behavior..........................................................................................................37

How to deal with Holiday Stress....................................................39

Understanding the Diagnosis....................................................4

What you need to know to make

the best decision for your child..............................................12

Important information everyone should know...................18

What teachers have to say....................................................22

The M.O.R.G.A.N Project...................................................26

Extraordinary02

Hello!From Alexandra

Thank you so much for opeining this new issue of “Extaordinary”! Our magazine was created to fill the need for a current magazine dedicated in its entirety to the parents and or guardians with special needs children. “Extraordinary” gives its readership the valuable, current information they have been searching for all in one place. This magazine is designed to make life a little easier by having popular topics to read about and answering the most frequently asked questions by you, our readers! In addition, “Extraordinary” makes sure to include topics that used to be over looked in the past but are still equally as important to our readers. “Extraordinary” strives to be inspirational, educational, encouraging, enriching, and uniquely designed with its audience in mind with every new issue printed. In this issue we have included some important feature articles about medicating child with disablities, ADHD, Austism, testing, and what to expect for your childs future as an adult. And of course our ever so reliable departments!

Thank you again for opening Extraordinary!

Alexandra Dominguez

Extraordinary03

ADHDUnderstanding this Disorder

hat is ADHD? ADHD stands for Attention-Deficit/Hyperactivity Disorder. ADHD is a W

neurobehavioral disorder that affects children, adolescents, and adults. It is commonly referred to as AD/HD and ADD, but the correct term is ADHD. This disorder shows itself as a persistent pattern of inattention and/or hyperactivity/impulsivity that is more frequent and severe than is typically seen in one’s peers. The brain uses various chemicals to help send messages across the nervous system. An imbalance of these chemical messengers may result in the inattentive and hyperactive/impulsive symptoms of ADHD. Only a trained health care professional can accurately diazgnose ADHD

and any side effects of medications. During these check-ups, information should be gathered from parents, teachers, and the child.

Medications A combination of medication and behavioral treatment works best. There are several different types of ADHD medications that may be used alone or in combination. Psychostimulants (also known as stimulants) are the most commonly used ADHD drugs. Although these drugs are called stimulants, they actually have a calming effect on people with ADHD.These drugs include:

- Amphetamine-dextroamphetamine (Adderall)- Dexmethylphenidate (Focalin)- Dextroamphetamine (Dexedrine, Dextrostat)- Lisdexamfetamine (Vyvanse)- Methylphenidate (Ritalin, Concerta, Metadate, Daytrana)

A nonstimulant drug called atomoxetine (Strattera) may work as well as stimulants, and may be less likely to be misused. Some ADHD medicines have been linked to rare sudden death in children

Signs And Tests Too often, difficult children are incorrectly labeled with ADHD. On the other hand, many children who do have ADHD remain undiagnosed. In either case, related learning disabilities or mood problems are often missed. The American Academy of Pediatrics (AAP) has issued guidelines to bring more clarity to this issue.The diagnosis is based on very specific symptoms, which must be present in more than one setting.

- Children should have at least 6 attention symptoms or 6 hyperactivity/impulsivity symptoms, with some symptoms present before age 7.- The symptoms must be present for at least 6 months, seen in two or more settings, and not caused by another problem.- The symptoms must be severe enough to cause significant difficulties in many settings, including home, school, and in relationships with peers.

In older children, ADHD is in partial remission when they still have symptoms but no longer meet the full definition of the disorder. The child should have an evaluation by a doctor if ADHD is suspected.

Evaluation may include:- Parent and teacher questionnaires (for example, Connors, Burks)- Psychological evaluation of the child AND family, including IQ testing and psychological testing- Complete developmental, mental, nutritional, physical, and psychosocial examination

Treatment Treating ADHD is a partnership between the health care provider, parents or caregivers, and the child. For therapy to succeed, it is important to:

- Set specific, appropriate target goals to guide therapy- Start medication and behavior therapy.- Follow-up regularly with the doctor to check on goals, results,

Treating ADHD is a part-nership between the health care provider, parents or

caregiver, and the child.

Treating ADHD is a part-nership between the health care provider, parents or

caregiver, and the child.

Extraordinary04

with heart problems. Talk to your doctor about which drug is best for your child.

Behavior Therapy Talk therapy for both the child and family can help everyone understand and gain control of the stressful feelings related to ADHD. Parents should use a system of rewards and consequences to help guide their child’s behavior. It is important to learn to handle disruptive behaviors. Support groups can help you connect with others who have similar problems.Other tips to help your child with ADHD include:

- Communicate regularly with the child’s teacher.- Keep a consistent daily schedule, including regular times for homework, meals, and outdoor activities. Make changes to the schedule in advance and not at the last moment.- Limit distractions in the child’s environment.- Make sure the child gets a healthy, varied diet, with plenty of fiber and basic nutrients.- Make sure the child gets enough sleep.- Praise and reward good behavior.- Provide clear and consistent rules for the child.

Alternative treatments for ADHD have become popular, including herbs, supplements, and chiropractic treatments. However, there is little or no solid evidence that these work. Treatments can very from child to child so it may take some time to find which treatment

Extraordinary05

works best for your child. Over time you will discover how to keep your child from being over stimulated but still able to function like a child without ADHD.

Helpful Hint: Fill out this attached sheet to help see what method of treatment is best for your child!

Tear

Her

e

Learning how to keep your child happy without over stimulating

them is an important part in dealing with their ADHD

Extraordinary06

MedicatingYour Child

Positives and Negatives

o medicate or not to medicate? At some point in your child’s life you will likely have that decision to make. Some children are prescribed medications because of serious medical conditions such as epilepsy or diabetes.

Obviously, these children must have prescribed medication. Often it is necessary for survival. For other children the decision might not be as clear cut. Some children may be considered for medication because of behavioral or attention disorders that are most apparent in quiet, work settings like school. The considerations vary from child to child. Some parents prefer for their child not to be on medication at all. If your child is “on meds,” have a plan that includes a paperwork safety net to administer them. Perhaps the parents’ work schedules mean that it is not always the same parent giving the medication. Have a chart that is kept near the medication, and away from the reach of children. Record each date and time the medication is given. With some attention deficit medications, parents choose not to medicate their child in the evenings, on weekends, and other times when the child is not attending school. Consideration should be given to the impact on the child’s ability to complete school assignments as well as to participate in extracurricular activities. If you are discussing medication with your child’s doctor, ask questions to get an idea of the best choice for your child. Only you and your doctor can make that decision.

T

Today’s post examining the pros and cons of psychotropic medication in kids is the second in a week-long series about psychiatric and learning disorders in children as part of “Speak Up for Kids,” a nationwide education campaign during National Children’s Mental Health Awareness Week (May 1-7, 2011). Yesterday, we looked at possible causes of the current epidemic of mental illness among kids in the U.S. Tomorrow, we’ll look at the struggles families face in trying to obtain the best possible treatment for their children. The widespread use of medication among children with mental health disorders is the ultimate “hot-button” topic in our field today. Undeniably, the use of such medications in kids has increased dramatically over the last twenty years. During our series on ADHD and spiritual development, we noted that 9% of U.S. kids between the ages of 5-17 have received at least one prescription for ADHD in their lifetimes. A recent study reported that the second, third and fourth most commonly prescribed classes of medications for children (behind asthma medication) are ADHD medications, antidepressants and antipsychotics, respectively. The question that parents ultimately face is not so much whether doctors are too quick to prescribe medication in general, but whether medication is necessary and appropriate for their child. Today, I’d like to share three excellent resources offered by the American Academy of Child and Adolescent Psychiatry (AACAP) as part of the Academy’s “Facts for Families” series. These articles review how medications are used for children, the types of medication used and questions parents and kids should ask their

physician prior to taking medication. I could write a book on the specifics of how these medications work, but that would be beyond the scope of this post. Instead, here are some general principles for ministry leaders and parents to

Undeniably, the use of such medications in kids has increased dramatically over the

last twenty years.

Undeniably, the use of such medications in kids has increased dramatically over the

last twenty years.

consider when the topic comes up: Medication shouldn’t be prescribed until the child has had a thorough evaluation by an appropriately-trained professional with experience in diagnosing and treating children and adolescents. You want to make sure that the physician you’re working with has taken the time to understand your child and consider all of the biological, psychological, family systems, educational, developmental and environmental factors that may be contributing to your child’s difficulties. For me, the process usually takes at least three hours and involves separate interviews with the parent and the child, review of school records, and collection of observations from parents, teachers, and when appropriate, observations from other significant adults. When non-medical treatment interventions have been demonstrated to be at least equally effective to medication and the child is not experiencing severe functional impairment, consider non-medical approaches first. A good example of this principle would involve kids with mild to moderate anxiety symptoms or mild to moderate depression without suicidal thoughts or plans. We have reasonable studies demonstrating cognitive-behavioral therapy to be an effective alternative to medication in kids with anxiety or depression. Consider medications that have been studied extensively in kids first prior to using newer medications not yet approved for marketing in children by the FDA. In the case of kids with ADHD, this isn’t a major concern. The first placebo-controlled trial of medication for ADHD

Extraordinary09

(Benzedrine…a product very similar in chemical composition to the medication currently marketed as Adderall) was published in 1937. We have over 2,000 published clinical studies or research reports examining the safety and effectiveness of ADHD medication. Prozac and Lexapro are approved for use in adolescents with depression. Zoloft and Luvox are approved for children with anxiety and/or Obsessive-Compulsive Disorder. Risperdal, Seroquel and Abilify are approved for use in kids with bipolar disorder. We’ve progressed to the point where we have reasonable clinical data supporting the use of medication for most significant mental disorders in kids. Note: FDA approval regulates what a drug company can say in marketing a given medication, but doesn’t restrict how a physician may prescribe medication. Your physician may have a good reason for prescribing medication that’s not formally FDA-approved in kids, but this is a far less frequent occurrence now compared to five years ago. Always make sure that you understand why a specific medication is being prescribed and what the intended benefits are of the medication. We were doing a study looking at the safety of antipsychotic medications a number of years ago and I was blown away by the number of kids who came into our clinic who were experiencing serious side effects from medication that they (or their parents) didn’t know why they were taking. Speak to your physician about discontinuing medication when your child’s not getting better. Medication for one condition can often result in exacerbation of other conditions. In my practice, we probably stop more medication than we start. When things aren’t

working, we often thoughtfully discontinue medication in order to reestablish “baseline.” Note to parents…Speak to your child’s physician first before discontinuing any medication on your own! Bottom line…Medication in the hands of an appropriately trained physician can be one instrument God uses in responding to prayers for a child with a serious emotional or behavioral disorder. In the same way, God may use a physician who’s not necessarily a Christian to bring about healing…Christians in my field are only slightly more common than victory parades in Downtown Cleveland. God’s not limited to using Christians to help kids with issues About 5-8% of young children have severe behavioral and emotional disorders ranging from mild attention deficit disorder to severe cerebral palsy. Recent medical reports show a drastic increases in the number of children taking stimulants, antidepressants and other psychiatric drugs. It has actually doubled from 1998 to 2002. But is this really necessary? Who is influencing these decisions? These increases include preschool children aged 2 to 4. Children with ADHD are often disruptive in school or groups, have trouble sitting still and act impulsively. The most common prescribed drug for all children is Ritalin. The debate over the use of stimulants and other psychiatric drugs in the toddler age group focuses on how in particular we distinguish between variations of the extremes of a “normal” behaving young child, versus that of a disorder requiring a medication. There are no “tests” for most psychiatric conditions and the diagnosis is essentially the judgment of the evaluator, so it is wise to seek

Writing prescriptions is easy, but understanding people is hard.

- Franz Kafka, from The Country Doctor

Extraordinary10

What should a doctor do when a parent is

pressing for a child to unnecessarily be put on

meds?

multiple opinions, and talk to other parents who have experienced the same issues. There is very little information available on the benefits or safety of stimulants in this young age group, because testing on children is obviously deemed unethical. Reports however, suggest that toddlers and preschoolers experience more frequent side effects, and that their rates of improving are in fact lower compared to school aged children on such medications. These children are highly responsive to changes in their environment. However many physicians and even teachers often urge and even pressure parents to medicate their children, and to not bother even experimenting with alternative methods of treatment. One M.D. says “If one can work with the parents, daycare, or preschool to develop a form of parenting that is most suited to these children’s personalities and behavior, one can see changes as dramatically positive as if they were taking some sort of medication. In the long term it is believed that these children and their families will be better served by developing strategies within the home than depending on medication.” He also says “It should be a very rare child that requires medication below age five.” For some children, however, behavioral interventions will be insufficient, and careful use of medication may be needed. For those, these medications may be lifesaving, and are being used as a last step by parents and physicians after other options have been exhausted.

Terri, mother of an 11 year old child with ADHD says she felt strongly pressured to medicate her son. “We went to a psychologist once” she said, “who supposedly specialized in behavior, hoping to get some tips, and his advice was: If you’d just medicate him, you wouldn’t have to deal with all this other stuff.” Another mom said she not only feels pressure from doctors but also from teachers, but “I rather like him the way he is quirks and all!” She argues. Some parents are even desperate to get their children on meds. But many children are not properly diagnosed and evaluated to be medicated. One doctor who specializes in the area, says she was

What should a doctor do when a parent is

pressing for a child to unnecessarily be put on

meds?shocked to hear some parents more than pressing for their special needs child to be placed on medications, and not willing or even interested in alternative treatments, when she felt that medication was not needed. What do you think about this? Should children deemed as special needs be evaluated by, say, 3 different doctors before being advised a treatment? What should a doctor do when a parent is pressing for a child to unnecessarily be put on meds? How would you advise a mom who is coping with pressure from doctors and teachers to medicate her child when she feels it’s not needed?

Nervous system stimulants that are in many brands of

ADHD medication.

Extraordinary11

504 Planvs.

IEPWhat You Should know

guide to Section 504 in public schools, this important civil rights law can provide educational benefits to kids with learning disabilities and/or AD/HD in public schools. But you have to understand it first.

Section 504 — just what exactly is it? You’ve probably heard about it, but every school district

addresses Section 504 in a different manner. Some districts have even been heard to say,

“We don’t do that in this district.” But in fact, compliance to Section 504, which is a federal statute, is not optional. This article attempts to answer basic questions pertaining to the implementation of Section 504 in public school systems.

What is Section 504? Section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination,

civil rights statute that requires the needs

of students with disabilities to

be met

A

as adequately as the needs of the non-disabled are met. Section 504 states that: “No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance...” [29 U.S.C. §794(a), 34 C.F.R. §104.4(a)].

Who is Covered Under Section 504? To be covered under Section 504, a student must be “qualified ” (which roughly equates to being between 3 and 22 years of age, depending on the program, as well as state and federal law, and must have a disability) [34 C.F.R. §104.3(k)(2)].

Who is an “Individual with a Disability”? As defined by federal law: “An individual with a disability means any person who: (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” [34 C.F.R. §104.3(j)(1)].

What is an “Impairment” as used Under the Section 504 Definition?

An impairment as used in Section 504 may include any disability, long-term illness, or various disorder that “substantially” reduces

or lessens a student’s ability to access learning in the educational setting because of a learning-, behavior- or health-related condition. [“It should be emphasized that a physical or mental impairment does not constitute a disability for purposes of Section 504 unless its severity is such that it results in a substantial limitation of one or more major life activities” (Appendix A to Part 104, #3)]. Many students have conditions or disorders that are not readily apparent to others. They may include conditions such as specific learning disabilities, diabetes, epilepsy and allergies. Hidden disabilities such as low vision, poor hearing, heart disease or chronic illness may not be obvious, but if they substantially limit that child’s ability to receive an appropriate education as defined by Section 504, they may be considered to have an “impairment” under Section 504 standards. As a result, these students, regardless of their intelligence, will be unable to fully demonstrate their ability or

attain educational benefits equal to that of non-disabled students (The Civil Rights of Students with Hidden Disabilities under Section 504 of the Rehabilitation Act of 1973—Pamphlet). The definition does not set forth a list of specific diseases, conditions or disorders that constitute impairments because of the difficulty of ensuring the comprehensiveness of any such list. While the definition of a disabled person also includes specific limitations on what persons are classified as disabled under the regulations, it also specifies that only physical and mental impairments are included, thus “environmental, cultural and economic disadvantage are not in themselves covered” (Appendix A to Part 104, #3). Still with me? I know it is a lot to take in, but hang in there! It’s important to understand this information, for yourself and the special child in your life.

What’s an IEP? Kids with delayed skills or other disabilities might be eligible for special services that provide individualized education programs in public schools, free of charge to families. Understanding how to access these services can help parents be effective advocates for their kids. The passage of the updated version of the Individuals with Disabilities Education Act (IDEA 2004) made parents of kids with special needs even more crucial members of their child’s education team.

School can be a scary place for children, especially when they have

special needs. So make it easy on them and make sure you know the best way

for them to succeed!

Extraordinary13

Parents can now work with educators to develop a plan — the individualized education program (IEP) — to help kids succeed in school. The IEP describes the goals the team sets for a child during the school year, as well as any special support needed to help achieve them.

Who Needs an IEP? A child who has difficulty learning and functioning and has been identified as a special needs student is the perfect candidate for an IEP. Kids struggling in school may qualify for support services, allowing them to be taught in a special way, for reasons such as:

- learning disabilities- attention deficit hyperactivity disorder (ADHD)- emotional disorders - cognitive challenges- autism- hearing impairment- visual impairment- speech or language impairment

developmental delay

The Referral and Evaluation Process The referral process generally begins when a teacher, parent, or doctor is concerned that a child may be having trouble in the classroom, and the teacher notifies the school counselor or psychologist. The first step is to gather specific data regarding the student’s progress or academic problems. This may be done through:

- a conference with parents- a conference with the student- observation of the student- analysis of the student’s performance (attention, behavior, work completion, tests, classwork, homework, etc.)

This information helps school personnel determine the next step. At this point, strategies specific to the student could be used to help the child become more successful in school. If this doesn’t work, the child would be tested for a specific learning disability or other impairment to help determine qualification for special services.

It’s important to note, though, that the presence of a disability doesn’t automatically guarantee a child will receive services. To be eligible, the disability must affect functioning at school. To determine eligibility, a multidisciplinary team of professionals will evaluate the child based on their observations; the child’s performance on standardized tests; and daily work such as tests, quizzes, classwork, and homework.

General Education - All Students- Universal Screening- Appropriate, Research-Based Core Instruction- Universal Interventions- Service Target - 80%

SAT and/or Section 504 Team - Some Students- Supplemental, Targeted Interventions- Individual or Small Group Instructions- Service Target - 15 to 20%

Special Education/Gifted - Few Students - Individualized, Intensive, Specially designed instruction and services

- Service Target - 18% or less

Tier3

Tier2

Tier1

Extraordinary14

Who’s On the Team? The professionals on the evaluation team can include:

- a psychologist- a physical therapist- an occupational therapist- a speech therapist- a special educator- a vision or hearing specialist- others, depending on the child’s specific needs

As a parent, you can decide whether to have your child assessed. If you choose to do so, you’ll be asked to sign a permission form that will detail who is involved in the process and the types of tests they use. These tests might include measures of specific school skills, such as reading or math, as well as more general developmental skills, such as speech and language. Testing does not necessarily mean that a child will receive services. Once the team members complete their individual assessments, they develop a comprehensive evaluation report (CER) that compiles their findings, offers an educational classification, and outlines the skills and support the child will need. The parents then have a chance to review the report before the IEP is developed. Some parents will disagree with the report, and they will have the opportunity to work together

STUDENT NEED 504 PLAN(REGULAR EDUCATION)

IDEA(SPECIAL EDUCATION)

Pre - AssessmentActivities

Consideration ofIDEA

Disability adversely affects educational

performance?

IDEA Eligible

Education designed toprovide benefit

Specially DesignedInstruction

IndividualEducation Program

(IEP)

RelatedServices

Evaluation

Consideration of504

Data review andevaluation, if

necessary

Disability substantially limits one or moremajor life activities

504 Qualified

Is the educational programcomparable to that provided

to non-disabled students

Accommodations

Physical Instructional

RelatedAids &

Services

SpecializedInstruction

Student Accommodationsand/or Services

FREE APPROPRIATE PUBLIC EDUCTION

IDEA - Reviewed Annually504 - Reviewed Periodically

No Referral

Not EligibleNo

NoYes

Yes

Yes

No

This graph is an example of the process that each student’s “team” will go

through to see which plan will be the best for him/her.

Extraordinary15

with the school to come up with a plan that best meets the child’s needs.

Developing an IEP The next step is an IEP meeting at which the team and parents decide what will go into the plan. In addition to the evaluation team, a regular teacher should be present to offer suggestions about how the plan can help the child’s progress in the standard education curriculum. At the meeting, the team will discuss your child’s educational needs — as described in the CER — and come up with specific, measurable short-term and annual goals for each of those needs. If you attend this meeting, you can take an active role in developing the goals and determining which skills or areas will receive the most attention.

The cover page of the IEP outlines the support services your child will receive and how often they will be provided (for example, occupational therapy twice a week). Support services might include special education, speech therapy, occupational or physical therapy, counseling, audiology, medical services, nursing, vision or hearing therapy, and many others. If the team recommends several services, the amount of time they take in the child’s school schedule can seem overwhelming. To ease that load, some services may be provided on a consultative basis. In these cases, the professional consults with the teacher to come up with strategies to help the child but doesn’t offer any hands-on instruction. For instance, an occupational therapist may suggest accommodations for a child with fine-motor problems that affect handwriting, and the classroom teacher would incorporate these suggestions into the handwriting lessons taught to the entire class. Other services can be delivered right in the classroom, so the child’s day isn’t interrupted by therapy. The child who has difficulty with handwriting might work one on one with an occupational therapist while everyone else practices their handwriting skills. When deciding how and where services are offered, the child’s comfort and dignity should be a top priority. The IEP should be reviewed annually to update the goals and make sure the levels of service meet your child’s needs. However, IEPs can be changed at any time on an as-needed basis. If you think your child needs more, fewer, or different services, you can request

a meeting and bring the team together to discuss your concerns.

Your Legal Rights Specific timelines ensure that the development of an IEP moves from referral to providing services as quickly as possible. Be sure to ask about this timeframe and get a copy of your parents’ rights when your child is referred. These guidelines (sometimes called procedural safeguards) outline your rights as a parent to control what happens to your child during each step of the process. The parents’ rights also describe how you can proceed if you disagree with any part of the CER or the IEP — mediation and hearings both are options. You can get information about low-cost or free legal representation from the school district or, if your child is in Early Intervention (for kids ages 3 to 5), through that program. Attorneys and paid advocates familiar with the IEP process will provide representation if you need it. You also may invite anyone who knows or works with your child whose input you feel would be helpful to join the IEP team.

A Final Word Parents have the right to choose where their kids will be educated. This choice includes public or private elementary schools and secondary schools, including religious schools. It also includes charter schools and home schools. However, it is important to understand that the rights of

All Children

All Childrenwith

Disabilities

Children with physical/mental disability thatsubstantially limits a major life function (504 Plan)Children who have

1 out of the 13 IDEA

disabilities and who

need special education

services (IEP)

Extraordinary16

children with disabilities who are placed by their parents in private elementary schools and secondary schools are not the same as those of kids with disabilities who are enrolled in public schools or placed by public agencies in private schools when the public school is unable to provide a free appropriate public education (FAPE). Two major differences that parents, teachers, other school staff, private school representatives, and the kids need to know about are: Children with disabilities who are placed by their parents in private schools may not get the same services they would receive in a public school. Not all kids with disabilities placed by their parents in private schools will receive services. The IEP process is complex, but it’s also an effective way to address how your child learns and functions. If you have concerns, don’t hesitate to ask questions about the evaluation findings or

the goals recommended by the team. You know your child best and should play a central role in creating a learning plan tailored to his or her specific needs.

How Does a 504 Plan Differ from an IEP? Well to sum everything up, a 504 plan, which falls under civil-rights law, is an attempt to remove barriers and allow students with disabilities to participate freely; like the Americans With Disabilities Act, it seeks to level the playing field so that those students can safely pursue the same opportunities as everyone else. An IEP, which falls under the Individuals with Disabilities Education Act, is much more concerned with actually providing educational services. Students eligible for an IEP, or Individualized Education Plan, represent a small subset of all students with disabilities. They generally require more

than a level playing field -- they require significant remediation and assistance, and are more likely to work on their own level at their own pace even in an inclusive classroom. Only certain classifications of disability are eligible for an IEP, and students who do not meet those classifications but still require some assistance to be able to participate fully in school would be candidates for a 504 plan.

Giving your child the best education you can starts

with being aware and understanding all of the

options available to them.

Extraordinary17

AutismImportant Information

Everyone should know!

hat Does Autism Mean? People usually call it autism (say: aw-tih-zum), but the official name is autism spectrum disorders. Why? Because doctors include autism in a group of problems that kids can have, including Asperger syndrome and others. These problems happen when the brain develops differently and has trouble with an important job: making sense of the world. Every day, our brains interpret (understand) the things we see, smell, hear, taste, touch, and experience. But when someone’s brain has trouble interpreting these things, it can make it hard to talk, listen, understand, play, and learn.

W

A kid’s symptoms could be very mild, severe, or somewhere in the middle. For example, some kids might be upset by too many noises or sounds that are too loud. Kids who have milder symptoms don’t mind loud noises so much. Someone with mild symptoms might need only a little bit of help. But a kid with severe symptoms might need a lot of help with learning and doing everyday stuff. Kids with autism often can’t make connections that other kids make easily. For example, when people smile, you know they feel happy or friendly; when people look mad, you can tell by their face or their voice. But many kids who have autism spectrum disorders have trouble understanding what emotions look like and what another person is thinking. They might act in a way that seems unusual, and it can be hard to understand why they’re doing it. A kid with an autism spectrum disorder might:

- Have trouble learning the meaning of words- Do the same thing over and over, like saying the same word- Move his or her arms or body in a certain way- Have trouble adjusting to changes (like trying new foods, having a substitute teacher, or having toys moved from their

usual places) Imagine trying to understand what your teacher is saying if you didn’t know what her words really meant. It is even more frustrating if a kid can’t come up with the right words to express his or her own thoughts, or tell a parent what he or she needs or wants. Sometimes

this can make a kid very upset and frustrated. Some issues — like not wanting to try new foods or not wanting anyone to move your toys — affect lots of kids, not just those who have an autism spectrum disorder. But kids with these disorders have more trouble “growing out of it” and learning to handle stuff that’s challenging and annoying.

What Causes Autism? According to the Centers for Disease Control and Prevention (CDC), 1 in 88 kids has an autism spectrum disorder, but no one knows what causes them.

Scientists think that there’s a connection to genetics (something to do with a kid’s genes) and the environment. Some kids might be more likely to get autism because it runs in their families. Other kids get it even if nobody in their family has these types of problems. Knowing the exact cause of autism is hard because the human

brain is very complicated. The brain contains more than 100 billion nerve cells called neurons (say: nur-ahns). Each neuron may have hundreds or thousands of connections that carry messages to other nerve cells in the brain and body. The connections and the chemical messengers they send (called neurotransmitters) keep the neurons working as they should. When they do, you can see, feel, move, remember, experience emotions, communicate, and do lots of other important stuff. In the brain of a kid with autism, some of those cells and connections don’t develop normally or don’t get organized like they’re supposed to. Scientists are still trying to understand how and why this happens.

Imagine trying to un-derstand what your teacher is saying if you didn’t know what her words really meant.

Imagine trying to un-derstand what your teacher is saying if you didn’t know what her words really meant.

Extraordinary19

How Common is Autism? Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States. By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.* ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered.

What is an Autism Spectrum Disorder? Different people with autism can have very different symptoms. Health care providers think of autism as a “spectrum” disorder, a group of disorders with similar features. One person may have mild symptoms, while another may have serious symptoms. But they both have an autism spectrum disorder.Currently, the autism spectrum disorder category includes:

- Autistic disorder (also called “classic” autism)- Asperger syndrome- Pervasive Developmental Disorder Not Otherwise Specified (or atypical autism)

In some cases, health care providers use a broader term, pervasive developmental disorder, to describe autism. This category includes the autism spectrum disorders above, plus Childhood Disintegrative Disorder and Rett syndrome.

What Does it Mean to Be “On the Spectrum”?

Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means. Autism Speaks’ mission is to improve the lives of all those on the autism spectrum. For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.

Extraordinary20

Getting Help for Autism

The earlier a child starts getting help, the better. But figuring out if a kid has an autism spectrum disorder can be difficult at the beginning. A parent is usually the first to think that something could be wrong. Maybe the child is old enough to speak but doesn’t. Or a kid doesn’t seem interested in people, has a hard time playing with others, or acts in unusual ways. Often, specialists work together as a team to figure out if there is a problem. In addition to the doctor, the team might include a psychologist, speech therapist, occupational therapist, and teacher. There is no cure for autism, but doctors, therapists, and special education teachers can help kids learn to communicate better. A kid might learn sign language or get a message across by pointing at pictures. The care team also can help improve a kid’s social skills, stuff like taking turns and playing in a group. Some kids who have mild symptoms will graduate high school and may go to college and live on their own. Many will always need some kind of help. But all will have brighter futures when they have the support and understanding of their families, doctors, teachers, therapists, and friends. So be sure to be a friend!

Extraordinary21

Testing Our Children

What a Teacher has to say

n schools across the country accommodations are made everyday for children with special needs, both in the classroom and teaching. However, what about testing? Sure some children are fine with being given extra time on their tests, but what about those who need more? Here in

Florida, we have the FCAT, which is part of the “No Child Left Behind” Act of 2004. But how can special needs children who have a vocabulary of 50 words supposed to comprehend a test like that and succeed? That same child could have progressed from 15 words to 50 words in a school year but if he/she can not pass the FCAT then it doesn’t matter. How can we show that they are indeed progressing greatly each year? If we have more than one education plan for kids, like the 504, IEP, gifted, regular, and honors, then why not have more than two option for testing all of those students? This interview is from Jane Curtan, a 20+ year teacher of special needs children here in St. Augustine.

I

Extraordinary23

Do you receive any outside/departmental help in regards to your special needschildren?

Yes I do. For my student with speech problems, his speech therapist comes in and we come up with modifications together. Some of those modifications might be having a test read aloud or something to that affect. For my special education students, they have a teacher that is in charge of them. That teacher assists me when the special education students join me in my classroom. Counselors help the other students who have special needs (dyslexic, ADD, ADHD, oppositional defiant disorder), and lessons are adjusted accordingly.

How would you characterize the atmosphere of your classroom?

I try to maintain good discipline, and I keep things structured, but I also try to make it a place where it’s non-threatening or non-intimidating. It’s a place where students feel that they can share their beliefs and discuss their ideas safely. Most children feel very comfortable when they come in the classroom.

How do you emphasize critical and creative thinking and the application of learning in your classroom?

For example, I will let students generate their own questions in social studies rather than just look at the questions on a worksheet or at the end of a chapter. With definitions, my students not only know the definition, but also can use it in a sentence, and then teach the meaning of the word to another student. That way the definition is really in there.

Why do you choose to have students use the same informational resources?

As far as books and things like that, we are pretty limited. At the end of the year, we do a project where different informational resources are used, so it really depends on the assignment. Some kids aren’t able to get their own resources because of outside issues, so I will go get those resources for them and have them available in the classroom.

What type of resources do you have students use in your classroom?

We use the textbook, library books, encyclopedias, dictionaries, and the computer lab for research when it is open.

When do you find it appropriate to group students according to their learning needs?

I look at my students’ strengths and weaknesses. I try to put some of the stronger in with the weaker because then they have someone to look onto for support. It depends though, because I might also have a group with all lower kids so that I can work one-on-one with them while the higher kids are more independent.

What are the learning needs that you look at when grouping students?

It depends on the assignment. Sometimes its ability, but sometimes I might look at how the students learn. Maybe the more visual students will be grouped together, or the more hands-on students will be together.

When do you give students choice in regards to activities?

It depends on the assignment. If it’s something that allows for students to be creative and bring their own ideas then I will let them choose.

Why do you choose to use different instructional methods for re-teaching material?

Sometimes I might find that it was my own mistake because no one understood, and I might just re-teach the same way. If just a few didn’t understand, I would come at it from a totally different angle.

When you allow for learner differences by providing different ways to show learning,

how do you handle assessment? When there are different assignments or different projects, I grade accordingly. Each different assessment would have its own rubric.

How do you determine your students’ different learning styles?

It takes some time to figure all of your students out. I am still getting to know my students now, but the best way to tell is by just watching your students during different assignments. Some will respond well to watching a movie, while others like getting up and acting something out. Once you finally pinpoint what your students respond well to, you can look at grouping and assignments with bigger eyes.

1

2

3

4

56

711

10

9

8

Extraordinary24

What do you think is the biggest problem in the education system today?

The over all amount of testing we are doing to our students. It seems to be one test after another, and children are losing their interest in school because it is no longer fun for them with all of the testing.

So I think most people are fairly familiar with the FCAT, but can you explain the

major differences between the Florida Alternative Assessment

and the FCAT? Well to start, it is important to know that all Florida students participate in the state’s assessment and accountability system. The Florida Alternate Assessment is designed for students whose participation in the general statewide assessment (FCAT, FCAT 2.0, and EOC) is not appropriate even with accommodations. The Florida Alternate Assessment measures student academic performance on the Next Generation Sunshine State Standards Access Points (NGSSS-AP) in Language Arts, Mathematics, and Science at three levels of complexity; participatory, supported, and independent. Access Points are academic expectations written specifically for students with significant cognitive disabilities. As part of the Next Generation Sunshine State Standards, access points reflect the essence or core intent of the standards that apply to all students in the same grade, but at reduced levels of complexity. It is expected that only students with the most significant cognitive disabilities who are eligible under IDEA will participate in the Florida Alternate

Assessment. One of the major differences between this test and the FCAT is that the students teacher is with the student during the test, one on one. Also, there is no reading for the child to do, the teacher asks the question and the student simply has to point to his/her answer. The student doesn’t have to worry about being tripped up on this test, like in the math section, before you can do math the kids have to figure out what the question is even asking of them. Not to mention that growth can not be seen with these current tests, and sadly there is not middle ground between the FAA and the FCAT.

12

13

“Children are losing their interest in school because it is no longer fun for them with all

of the testing.”

“Children are losing their interest in school because it is no longer fun for them with all

of the testing.”

What do you think should be done to solve this problem of testing our children?

Just like how they put in so much time to place kids in the right classroom and program, like the 504 plan, IEP, regular, gifted, and honors, schools should do the same for testing. Either there needs to be a test that is a middle ground between the FAA and the FCAT. Or even better, a test for each program type. So, if a student shows a great improvement, then they can either go up to next level (from regular to honors) or they can stay where they are if it is believe the next level would be too over whelming. This way students will not be forgotten, they will have a chance to really be rewarded for their success, and other, like our special needs children can show off their progression without worry about the FCAT.

Extraordinary25

What happens if a child does well on the FAA?

That is a good question that reveals a major problem actually. If a student does really well on the FAA, for example they score 8 and 9’s across all of the categories, then they are forced to take the FCAT test. Which unfortunately they usually do not do well at all.

Going back to the FCAT, in your opinion, what is one of its major flaws?

I would have to say the over all time that test takes up. It takes a week to give the test, and every 9 weeks we have to give a pre-test to predict how the students will do one the final test. It is out of control. Students just don’t care that much about the FCAT, most Christmas tree it anyway.

14

15

16

Time means a lot to the teachers who teach students with special needs. So taking time to teach them how to

take a test seems very silly to most of them. All these

teachers want is for their students to succeed.

For the Caregivers

TheM.O.R.G.A.N.

Project

n this issue we wanted to introduce you to The M.O.R.G.A.N. Project. They are an amazing non-profit who are about supporting the caregivers

of special needs children. So Extraordinary decided to share their story with you.

Board Members All of our Board Members are volunteers, are parents of children with special needs, or health-care professionals who work with these families, or supporters of the special-needs community with BIG hearts! All of our Board Members volunteer for The M.O.R.G.A.N. Project as a result of their common desire to help make the lives of these children as rewarding as possible. In addition, we have a Medical Advisory Committee comprised of doctors, nurses, social workers, physical therapists, occupational therapists, and other scientific backgrounds that will generously volunteer their time and expertise to make recommendations regarding the appropriateness of grants, and to otherwise share their valuable experience with special-needs children with our organization.

I

Extraordinary27

History The M.O.R.G.A.N. Project is a 501(c)(3) non-profit organization, established by Robert & Kristen Malfara in honor of their precious son Morgan, who has a very rare form of Leukodystrophy. All officers and board members serve as volunteers, and because we do not use our charitable contributions for salaries, the majority of our proceeds go towards meeting our program goals. Robert & Kristen feel honored to have been chosen to be the loving and caring parents of this very special, heaven-sent child. But most importantly, they also feel that it is their privilege to do so.

Aim First and foremost, we must recognize that it takes a special person/parent to take on the responsibilities of caring for a special-needs child, whether your own child, a foster child, or adopted child. However, it takes an extremely exceptional person/parent to recognize that it is our privilege, not just our obligation, to be loving caretakers to these very special Heaven-sent angels, and make their lives as rewarding and comfortable as possible. The M.O.R.G.A.N. Project was established to help these amazing people do just that.

Mission The M.O.R.G.A.N. Project is a national, community-based organization of volunteers whose mission is to promote awareness and facilitate support of parents caring for their children with special health care needs, and to enhance the Quality-of-Life for these special families.” Our Mission is to provide support to parents/caregivers and

act as a reference source for information, financial resources, used equipment exchanges, research and clinical studies, support groups, web links, etc. This is done in the form of an interactive website, and newsletters; To consolidate, and then disseminate, all the available informational tools available to caregivers, from sources such as the internet, newsletters, parenting organizations, support groups, etc. There is a lot of information out there, but it takes so much time to search for it that most caregivers just don’t have the time to spare to look for needed assistance on their own. Our resource database is a source of information for parents/caregivers to help them help their children; To make small individual scholarships (products & services only) to parents/caregivers of children with disabilities for travel expenses to attend diagnosis-specific parent support group/medical conferences that they would not otherwise be able to afford to attend. No parent/caregiver, or their family for that matter, should have to “bleed” in order to give their child the opportunity to be evaluated by experts, and to seek the support of other families in the same situation; To make small individual awards (products & services only) to parents/caregivers of children with physical disabilities, for things like adaptive bath and shower chairs not otherwise covered by Medicaid or Insurance, or other non-covered items that would make caring for these children easier on the parent/caregiver and help to improve their quality of life at the same time. Over the years our goals for this organization have gradually changed, based solely on our own experiences of caring for our

Extraordinary28

own chronically ill child with very involved special needs. Our original vision has not changed; it has just evolved to accommodate the additional needs and obstacles we have faced as our son has gone from an infant to a grade-schooler to a teenager. As a result, our Quality-of-Life support programs have been designed around one very simple value: to make their job of caring for their own special-needs child in the family home just a little bit easier.

PROGRAMS:Disability Resources

Since 2001, our all-volunteer team has responded to thousands of letters and email inquiries from parents of children with special health care needs seeking support. We have been able to direct many to resources that they were not aware of, resources that we have researched and catalogued over the past 14+ years and have now compiled into an extensive database. These resources are constantly updated, and may be downloaded off of our website.

Equipment Exchange We have responded to many hundreds of requests for pediatric adaptive and positional equipment through our Gently Used Disability Equipment Exchange Program that was instituted in early 2006. Through this program we have successfully matched donated items from families that no longer have a use for these items with families that have a demonstrated need. The M.O.R.G.A.N. Project provides the shipping of donated equipment from the donor and to the recipient at no cost to the families, and provides a tax receipt for the donations. Typical items processed through this program include bath chairs, gait trainers, walkers, car seats, feeder chairs, lightweight adaptive strollers and various medical supplies.

Quality of Life Enhancement Program In late 2007 we began our QOL Award Program, offering families that meet our minimum criteria the opportunity to apply for the “tools” that make their job of caring for their child easier AND enhance quality of life for the child and family at the same time. These “tools” are for things that are not considered medically necessary by insurance and Medicaid, but that can make a huge impact on the parent’s ability to be the safest caregiver and best advocate for their child that they can be. This program varies from year to year based on available funding, but has previously included providing bath chairs, car seats, lightweight portable adaptive strollers, positional seating devices, switch activated toys, vestibular stimulation, and similar items to children under the age of 18 with lifetime physical disabilities. We have also offered a limited number of families with financial assistance to help offset the cost to attend family oriented, disease-specific

medical support group conferences for the first time, in order to network with other families in the same situation.

Informational Pamphlets The M.O.R.G.A.N. Project has identified caregiver support as a high priority. As a result, we have created “Parenting a Child with Special Needs”, a basic informational pamphlet for parents who have just learned that they will be lifetime caregivers for their child with special health care needs. This pamphlet is given to parents at no cost, and offers guidance to plan and coordinate care for their child. It offers our Top 10 tips as to where to start on their new journey, along with some of the most important resources they will need as they begin.

MORGAN’S PLACE: Opened in 2012, The M.O.R.G.A.N. Project has established a facility named Morgan’s Place, located in Melbourne Beach, Florida. This unique center is now home to all of our Quality-of-life support programs, as well as offering information on other community disability resources and services. Additionally, we offer caregiver and advocacy training, seminars on the various issues related to caring for children with special needs, navigating the medical and emotional hurdles, finding financial assistance, caregiver support, legislative issues, etc. Morgan’s Place is not a drop-off center; it has been designed to provide a safe environment for parents to bring their children with special health care needs and physical disabilities for hands-on therapeutic play, as well as creative and fun activities. Our

For more information please visit

www.themorganproject.org

Extraordinary29

goal is to offer an alternative to outdoor inaccessible playgrounds, “McDonald’s” or “Chucky-Cheese” type play areas, “Mommy & Me” toddler playgroups, libraries, and other similar places or support groups that unfortunately are not appropriate for the physically disabled child with special health care needs.

Sensorium Based on “Snoezelen Multi-Sensory Environment” principles, we have created a one-of-a-kind non-threatening dedicated space designed to promote intellectual activity, heighten awareness, and encourage relaxation. Designed by the Christopher Douglas Hidden Angel Foundation, this room has been engineered to bring together state-of-the-art multi-sensory equipment to stimulate the sensory pathways of touch, taste, sight, sound, smell, and movement without the need for intellectual reasoning. A demand-free environment where you can select and experience sensory stimulation, it can produce a calming effect on individuals prone to frustration, or stimulate passive individuals who appear withdrawn. Ideal for those with profound disabilities who have limited access to multi-sensory stimulation on their own, or those who may have sensory processing challenges and need varying stimulation in order to process self-regulation, the desired results are to promote development, improve their capability to communicate, and positively affect their behavior. Our Sensorium also benefits those without disabilities where multi-sensory stimulation and experiencing the environment can be a basis for relaxation. This enriched environment encourages learning and improves the participant’s quality of life.

Technology Zone Designed to enable children with physical and cognitive challenges to access special education software on touch-screen tablets and touch-smart computers with or without the use of adaptive controllers and devices, our technology zone is also equipped with a video game system and oversized HDTV/monitor for both educational and recreational video gaming. We also offer sporting teams for children with special needs utilizing the Wii bowling, golf and tennis programs. In addition, our assistive technology computer lab and resource library provides parent caregivers with the tools they need to locate information and services that would benefit their children, as well as the support and services that would benefit their own needs.

Current Goal Our primary goal right now is to aggressively seek corporate sponsors, large donors and dedicated volunteers in order to grow our organization, continue to make valuable connections & tap resources in our community, and to continue to raise funds in order to provide and expand the goals of The M.O.R.G.A.N. Project.

For more information please visit

www.themorganproject.org

Extraordinary30

Vestibular sense (sense of balance):Jumping Jacks Marching around a roomRocking in a rocking chair Copying head movementsDoing a dance Going up and down stepsStretching and shaking Jumping ropeRiding in a wagon Standing on one footBouncing on a trampoline Playing on swingsDoing somersaults and head stands

Proprioceptive sense (sense of body position)Doing sit-ups and pull-ups Doing silly walksPlaying catch with a heavy ball Jumping ropePressing palms of hands together WrestlingVacuuming or sweeping the floor Playing tug-o-warEating something chewy Getting a bear hugPlaying clapping games Jumping on a trampolineDoing a “wheelbarrow” Playing with a vibrating toyWearing a weighted backpack or vestPushing another child on the swing (also good for getting siblings involved)Playing Simon Says(with lots of stretching, bending, and jumping)Rolling a large ball or bolster over your childMaking a sandwich of your child between two heavy items

ACTIVITIES: For Children with Sensory

Integration Disorder

We recommend this book to answer more of your questions!

ACTIVITIES: For Children with Sensory

Integration Disorder

Ten percent of the U.S. population has Sensory Integration Disorder-also known as Sensory Processing Disorder-which is characterized by the inability of the brain to accurately process information coming from the senses. For kids living with Sensory Integration Disorder, the world can be a scary place, full of potentially stressful experiences. Kids with SID can howl in discomfort over the feel of a shirt tag on bare skin. They may find the sound of a whisper to be as loud and frightening as a siren. These children who have SID have trouble understanding their “place”, and where the stop and begin. Sensory Integration Disorder – A disorder characterized by the inability to accurately process information coming to the brain from the senses, which results in inaccurate judgment of sensory information such as touch, sight, movement, taste, and sound. You’ll need to make accommodation for your child’s weaknesses, respect their limits, and plan for success by changing the environment, but no child is all weaknesses. Every child has strengths in some area, and those need to be applauded and supported as much as the weaknesses need to be compensated for. Make sure your child has plenty of opportunity to participate in something he’s god at and enjoys. Different activities will target different senses of your child. The point of practicing all of these activities is to maintain a balance among things that are stimulating and things that are relaxing so that your child maintains a good level of alertness.

Tactile sense (sense of touch)Popping bobble wrap Giving high-fivesRubbing skin with lotion or towels Playing with waterBlowing bubbles or balloons Playing in sandboxSqueezing soft balls or tubes Eating crunchy foodsDrinking through a straw Blowing on a whistleHaving shapes and letters drawn on backPlunging hand into tub of rice or dried beansArt projects that involve touching different substances

Most of these activities can be incorporated into the everyday life of your child. And some activities, as you may have noticed, target more than one sense. A good book to reference these thing is “The Everything Parent’s Guide to Sensory Integration Disorder” written by Terri Mauro, with Technical Review by Sharon A. Cermak, Ed.d., OTR/L, FAOTA.

Extraordinary31

Extraordinary32

speech.” So basically because these children are sensitive to these foods, it makes them uncomfortable so the theory is that they act out more, but on this diet, the child has less of a need to act out because they are not uncomfortable. Are there tips for eating at home or eating out on a gluten-free/casein-free diet? There are a large number of online retailers who specialize in food products for people following the GFCF diet. Some parents make GFCF food in large quantities and freeze portions for a later meal. Before making the change to a GFCF diet, consult your child’s doctor. A licensed dietitian can educate you about the GFCF diet and help you tailor the diet to your child’s health needs and taste preferences. In addition, before starting a child with autism on a gluten-free/casein-free diet, beware the hidden sources of gluten. Gluten can be found in fried foods that are dusted in flour and even in cosmetics. Whole foods such as fruits, vegetables, and nuts may be safe. But avoid using packaged mixes because there may be traces of foods containing gluten that are not listed on the nutrition label. Some restaurants are now categorized as GFCF-friendly. If you are concerned, ask the manager or server to show you a list of ingredients used in the establishment to make sure its dishes are gluten- and casein-free. Vegetarian/vegan restaurants are accustomed to serving people on special diets and may be more willing to prepare dishes that adhere to the restrictions of a strict GFCF diet. This diet is a more expensive alternative than a regular diet, however in most cases the benefits seen by a gluten/casein free diet out weigh the costs for parents.

Granola Bars- 3/4 C. packed brown sugar- 2/3 C. nut butter e.g. peanut butter- 3/4 C. honey- 1/2 C. melted margarine- 2 tsp. vanilla- 3 C. granola (e.g. from the Gluten-Free Pantry, or make your own)- 1/2 C. flaked coconut- 1/2 C. sunflower seeds- 1/2 C. chopped nuts (I used walnuts)- 2T sesame seeds, optional- 2T flax meal, optional- 1T calcium powder, optional- 1/2 C. chocolate chips, optional

Directions7. Combine brown sugar, peanut butter, honey, margarine, and vanilla.8. Beat until smooth.9. Add remaining ingredients and stir well.10. Press into a greased 9X13” pan and bake at 350 for about 25 min. or until golden brown.11. Cool completely before cutting.

For more recipes go to http://www.newdiets.com

NUTRITION: Gluten Free

andCasein Free Diet

NUTRITION: Gluten Free

andCasein Free Diet

A Gluten and Casein, also known as dairy, free diet is highly recommended for children with Autism, but it is also good for any child with a disability. This diet is over all healthier for the child, and doctors seem to recommend it regardless if a child truly needs to be on a gluten/casein free diet just because it does not cause any negative affect. However, some children really do need to be on this specialized diet. “It is one of several alternative treatments for children with autism. When following this strict elimination diet, all foods containing gluten ( found in wheat, barley and rye) and casein ( found in milk and dairy products) are removed from the child’s daily food intake. Some parents of children with autism believe their children are allergic or sensitive to the components found in these foods. Some seek allergy testing for confirmation. Yet, even when no allergy is confirmed, many parents of autistic children still choose to offer the GFCF diet. Among the benefits they report are changes in speech and behavior. The benefit of a gluten-free/casein-free diet is based on the theory that children with autism may have an allergy or high sensitivity to foods containing gluten or casein. Children with autism, according to the theory, process peptides and proteins in foods containing gluten and casein differently than other people do. Hypothetically, this difference in processing may exacerbate autistic symptoms. Some believe that the brain treats these proteins like false opiate-like chemicals. The reaction to these chemicals, they say, leads a child to act in a certain way. The idea behind the use of the diet is to reduce symptoms and improve social and cognitive behaviors and

Sugar Cookies- 2/3 c butter- 3/4 c sugar 1 t vanilla (I use Cooke’s Powdered Vanilla)- 1 egg- 4 t milk- 2 c sorghum/cornstarch mix (same as 1 1/3 cup sorghum flour plus 2/3 cup cornstarch)- 1/2 c soy flour- 1 1/2 t baking powder- 1/4 t salt

Directions1. Whisk flours, baking powder, salt and (powdered) vanilla together, set aside.2. Thoroughly cream butter and sugar (add liquid vanilla, if using).3. Add egg, beat till light and fluffy, stir in milk, blend in dry ingredients.4. Chill about 1 hour.5. Roll out between wax paper, cut desired shapes, bake 7 minutes at 375°.6. Remove immediately from cookie sheet, cool on wire racks before frosting.

We suggests mixing seven cups sorghum flour with one pound of cornstarch and keeping it in the cupboard for ease of cooking.

Extraordinary33

Extraordinary34

EDUCATION: Information on

School Physical Therapy

EDUCATION:Information on

School Physical Therapy

provision of a classroom aide. Additionally, the findings of school’s evaluation team are not final. You have the right to appeal their conclusions and determination. The school is required to provide you with information about how to make an appeal.

What a Parent Can Do Children with special needs are entitled rights to services in school under federal and state laws. Parents should always advocate for their child and must be proactive and take necessary steps to make sure their child receives appropriate services. The process can be confusing and intimidating for parents. Here are some tips: Parents should request copies of their school district’s Section 504 plan. This is especially important when a school district refuses services. If the school district does not respond to your request, you can contact a U.S. Department of Education Office of Civil Rights Regional Office for assistance. If the school district refuses services under the IDEA or Section 504 or both, you may choose to challenge this decision through a due process hearing (a legal hearing in which you and your child have an advocate who can help express your views and concerns). It may also be necessary to retain your own attorney if you decide to appeal a school’s decision.Other resources for parents include: the State Department of Education, Bazelon Center for Health Law at www.bazelon.org.

--For more information go to www.aacap.org--

with reasonable accommodations. It covers all programs or activities, whether public or private, that receive any federal financial assistance. Typically, children covered under Section 504 either have less severe disabilities than those covered under IDEA or have disabilities that do not fit within the eligibility categories of IDEA. The ADA (1990) requires all educational institutions, other than those operated by religious organizations, to meet the needs of children with psychiatric disorders.

Evaluation of Your Child As a parent, you may request an evaluation of your child to determine his or her needs for special education and/or related services. The evaluation may include psychological and educational testing, a speech and language evaluation, occupational therapy assessment and a behavioral analysis. These are the steps you need to take: 1. Meet with your child’s teacher to share your concerns and request an evaluation by the school’s child study team. Parents can also request independent professional evaluations. 2. Submit your requests in writing for evaluations and services. 3. Always date your requests and keep a copy for your records. 4. Keep careful records, including observations reported by your child’s teachers and any communications (notes, reports, letters, etc.) between home and school. 5. The results of the evaluation determine your child’s eligibility to receive a range of services under the applicable law. Following the evaluation, an Individualized Education Program (IEP) is developed. Examples of categories of services in IEPs include: Occupational Therapy, Physical Therapy, Speech and Language Therapy, and/or the

Some children experience difficulties in school, ranging from problems with concentration, learning, language, and perception to problems with behavior and/or making and keeping friends. These difficulties may be due to one or more of the following:

- physical disorders - psychiatric disorders- emotional problems - behavioral problems- learning disorders (or disabilities)

Federal law mandates that every child receive a free and appropriate education in the least restrictive environment possible. To support their ability to learn in school, three Federal laws apply specifically to children with special needs:

- The Individuals with Disabilities Education Act (IDEA) (1975)- Section 504 of the Rehabilitation Act of 1973 - The Americans with Disabilities Act (ADA) (1990).

The Laws IDEA is a federal law (1975, amended by the Office of Special Education Programs in 1997) that governs all special education services for children in the United States. Under IDEA, in order for a child to be eligible for special education, they must be in one of the following categories:

- serious emotional disturbance - learning disabilities- mental retardation - Autism- traumatic brain injury - physical disabilities- vision and hearing impairments - other health impairments

Section 504 is a civil rights statute (1973) that requires that schools not discriminate against children with disabilities and provide them

Extraordinary35

Extraordinary36

What Experts Have to Say:

Behavior

What ExpertsHave to Say:

Behavior

Families of some children with special needs have to deal with behavioral problems. These behavioral problems can result from the special need itself, or from a reaction to having the special need. Paying close attention to determine triggers of behavioral problems and then intervening as soon as possible to prevent the identified triggers, before the behavior becomes habitual, can make a significant difference. My child recently has begun exhibiting aggressive behaviors that I find extremely upsetting. What can I do? Some people have found that the aggressive behaviors exhibited by kids with FXS are often a cry for help -- a way to get out of a situation in which they feel overwhelmed. Kids know that by exhibiting that behavior, they’ll be given a time out or separated from other people. So it is important to keep a written record of exactly what was happening when each aggressive behavior ensued. Then you can look at see if there are any patterns in the situations that led to that behavior and avoid them in the future: Anxiety, Fear, Agitation, and Confusion. Once the triggers are identified, then attempting to intervene before the behavior occurs -- by teaching coping skills -- can often reduce the aggressive episodes. Intervening soon enough to prevent a repetition of the behavior is important, as you don’t want the aggressive behavior to become routine. In addition to intervening to prevent a problem, medication can also help to reduce aggression. What kinds of interventions have helped to reduce aggressive behavior in kids with FXS? The following interventions have helped to reduce aggressive behavior: Seating the child near

developmental age. Chronologically older kids may have temper tantrums that are actually appropriate for their developmental age. Behavior that looks like ADD and an inability to concentrate might instead be the result of: Hearing problems, Vision problems, Thyroid problems, Sleep disorders, Gastrointestinal problems, Anxiety over inability to keep up. Frustration over inability to comprehend material that is being taught either at too high a level or in a style that your child cannot process, Frustration over inability to make oneself understood due to communication limitations.How should I respond to inappropriate behavior?Here are two starting points: Have your child’s hearing checked first to rule that out, and Have the doctor check for other medical issues, such as sleep problems, which can then cause behavioral ones. My child resists taking his epilepsy medication and trying to get him to take it is a daily trauma. What can I do? Some children strongly dislike taking any medication. Plus, some kids feel that if they don’t take the medication, then that means they don’t have a problem -- a form of denial. Try reasoning with your child. Most kids are very motivated to not have seizures at school, and will take their medication as a way to prevent that. Also, try to incorporate taking the medication into normal family routines so that it becomes an integral part of the day. Find out what to do if your child misses a dose of the medication due to a change in routine. Be aware of possible side effects so that you will be able to alert the doctor as soon as possible. And keep a written record of any side effects that do occur, the time of day and under what circumstances.

an exit, Encouraging frequent breaks and building in down or calming time, Scheduling activities that release stress and energy, Acting out consequences to certain behaviors, Reducing noise and sounds, Limiting classroom size, Structuring the environment with a predictable sequence of events, Using signals and visual cues to warn of transitions,Avoiding crowds, Using natural lighting and avoiding florescent lights How can I facilitate my child’s transition to public school, since he doesn’t handle transitions well? Transitions have to be planned carefully for those kids with FSX who don’t like changes. One helpful option is to place pictures of the schedule for the day on a board, or on a card. Changes, such as an assembly, can be written out or pictured and inserted in the proper sequence. If you know that one of the activities will be disturbing to your child, see if it can be followed up with a calming activity. An example would be a loud assembly, which would disturb your child, followed by time on a beanbag chair, or another activity that your child finds soothing. What kinds of behavioral challenges should we expect with our child who has Down Syndrome? It is complicated to figure out what is causing symptoms that seem like behavioral problems. Sometimes kids with Down syndrome have trouble hearing or comprehending. When they fail to follow directions, it may be due to this rather than intentional disobedience. Frustration over an inability to comprehend something may cause a child to become disruptive. Try to identify the trigger so that you can decide how best to intervene. When assessing whether behavior is appropriate, try to figure out a child’s

Extraordinary37

Extraordinary38

OTHER TIPS: How to

Deal withHoliday Stress

OTHER TIPS:How to

Deal withHoliday Stress

While the words “stress-free” and “the holidays” don’t often go together, we at Brain Balance want all kids to enjoy this special time of year. No matter which holidays your family celebrates, the following tips and strategies can help everyone enjoy the season… especially those with special needs like ADHD and autism. Read and share our article, and enjoy this wonderful time of year!

Give your child a schedule of events for special activities, particularly on days with lots of transitions. Whether it’s a written schedule or one with pictures for younger kids, your child will feel calmer and safer knowing what is coming up. Discuss the schedule regularly and provide info for each event. For example, let your child know which events will take place outside and which will be loud or crowded. Sometimes just knowing what’s next can help children with special needs feel less anxiety.

Have a code word your child can use if he or she feels overwhelmed and needs a break. Assure your child if he or she uses the code word, you will respond right away. Again, giving children some control during activities that may be overstimulating for them will reduce anxiety.

Before you leave for holiday parties, parades, or other fun even have a quick family meeting so your whole family knows how long

kitchen and other holidays distractions, while enjoyable to most, can be too much for children with autism, ADHD, or sensory disorders. Let special needs children help you decorate for the holidays so they are involved in the changes that take place in their comforting environment.

The holiday season doesn’t have to be a stressful time of year for your special needs child! We hope these tips help your whole family enjoy this fun time of year!

--For more information on this topic go to www.fvnd.org--

1

2

3

4

5

6

you plan to stay and how you expect them to behave. This will benefit neuro-typical children as well, since any child can get overwhelmed with the excitement of the holidays. Continue to make your child’s sleep schedule a priority, even in the midst of so many special events.

Children with significant sensory sensitives may require a little extra planning to enjoy holiday festivities. For example, you may need to bring along ear plugs if you will be in a noisy environment or sensory fidgets if the child is expected to sit still. For sensitive kids who need to wear dress clothes for events, bring along some soft clothes for them to change into as soon as possible. Be prepared by knowing your child’s specific limitations and how you will handle them if the need arises. Don’t wait for the meltdown to begin.

If your children have food sensitives or allergies that prevent them from eating holiday treats, plan ahead to offer alternatives like all-natural candy or a gluten-free treat from home. Children with neuro-behavioral disorders like ADHD or autism often already feel different, so be sure to include them in as many holiday festivities as possible.

If your child is easily over-stimulated, limit holiday decorations in your home. Too many twinkling lights combined with smells from the

Extraordinary39

THURSDAY

Extraordinary