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Early intervention: The know-how for right now

The world is a very competitive place. From the dawn of humanity, human existence has followed an “Eat, or be eaten” philosophy. With the development of human intelligence, we started forming alliances – which just means you form a team, or collective, which itself eats or is eaten. But these alliances allow their members to draw on each others’ different strengths, support each others’ weaknesses and carry the shared burden of survival.

In modern times, advances in the medical field have allowed us to form a more comprehensive understanding of how the human body works. We know that the body is constantly changing, with the most dramatic and impactful changes happening in the earliest years of life. Advances in medical technologies have not only allowed us to more accurately observe and document the human biological process, but have also granted us the power to influence and, in some cases, completely change parts of this process.

These advancements have showed us, in no uncertain terms, that early intervention is the best way to ensure that you are giving your child the best chance at reaching their fullest potential – giving them a much needed head start in a world that is now more competitive than ever.

With the help of organizations like Parent to Parent of Miami, parents can access a vast collection of real-world information and resources that can be instrumental in addressing their child’s special needs. Through Parent to Parent, parents can receive the guidance of trusted community members who can steer them in the direction of early intervention centers and more specialized medical professionals locally and nationally. Businesses like Fresh Start(s) Behavioral Therapy, with the help of the latest advances in information technologies, can explore new approaches to treating conditions like autism and other developmental disabilities with the goal of making behavioral breakthroughs that will forever improve the quality of their lives and the lives of their loved ones.

There is no group of people that is more in need of our collective support than our children. As a parent, your first priority is your children. You raise them from day one to the best of your ability, instilling in them the tools that you, as a parent, believe will be of greatest use to them in their journey through life. At The Learning Experience School in South Miami, children and adults with learning disabilities can learn in a unique environment that is tailored to encourage their individual academic, social, and emotional growth alongside similarly developing peers. In the article titled “Empowering Children with Learning Disabilities,” Jeanette Melian lays out how important it is to make sure that our children are aware of themselves and their abilities, and how parents and teachers can do simple things to build their self-esteem and lay the foundation for a happy, fulfilled and successful life. Early intervention is the first step in making sure that, for the rest of their lives, your children can effectively use the tools you have given them.

We’ve come a long way from the days of Count Volta’s experiments (about which you’ll read on page 14) and we’ve made it to where we are today as a collective human community. You may think that we, humans, accomplished this harmonious unity in spite of our innate competitiveness, but I think we got there because of it. Instead of competing against each other, we unite in competition against a common enemy – the passing of time. We use and build upon all of our collective resources and form different alliances with multiple people to try to advance our cause as much as we can in the shortest time possible.

Competition may be human nature, but success cannot be achieved alone. At Directions Magazine we strive to be a uniting force in a community where time is of the essence – where a head-start can lead to a better life.

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Parents are the best advocates for their children; when faced with the diagnosis of a disability we discover the power within. This process is a defining moment in time

and it empowers us to learn a great deal of information in a very short period of time on issues related to health and education. The knowledge and skills that families of children with dis-abilities need to acquire is greater than anyone can possibly imagine.

IDEA (the Individuals with Disabilities Education Act) has clear provisions and funding for schools and Parent Centers to provide parents of children with disabilities access to workshops and information to help them increase their knowledge about the requirements of the law and community resources. The reality is that most parents do not access this information early enough. This is an issue for all parents; it applies to parents accessing services from the Part C Early Intervention Program, which focuses on serving families of infants and toddlers with developmental concerns or the local school system, who is responsible for evaluating children ages 3 to 21 years old with developmental or educational concerns.

There are over 100 Parent Centers funded by the U.S. Department of Education, Office of Special Education (OSEP) to help you help your child succeed. Parent to Parent of Miami is the Parent Center that serves Miami-Dade and Monroe counties.

If you are a parent of a child with a disability and your child has an Individualized Family Support Plan (IFSP) or individualized Education

Program, (IEP) this article is written for you. Improving health and educational outcomes of your children will require much more than attending a meeting. You are now your child’s advocate, and this new role requires building the skills and knowledge that will help you access the information that you need to help your child reach its potential.

As a parent, you are in control! Here are some easy steps and resources to help you get started:

Step I: Every parent needs to get familiarized with IDEA

Step II: You must learn as much as you can about the IFSP and the IEP. These two documents are the guide for services for children with disabilities. The more you know the easier it will be for you to express your child’s needs and your concerns.

Step III: Attend the IEP and Transition IEP Work-groups. These sessions are designed to help you understand how you can use these two documents to help your child succeed in school.

Parent to Parent of Miami has a series of IDEA workshops that will guide you with the process. Our workshops are designed and pre-sented by Education and Support Specialists that are parents of children with disabilities, have firsthand experience navigating the system, and are knowledge-able about resource and research based practices critical to the education of your child.

If you live in Miami, Florida, Parent to Parent of Miami is here to empower and support you.

Together, we can make a difference in your child’s education.

Parent to Parent of Miami can help you with:

Information about your child’s • disabilityCommunity Resources• Series of IDEA topics that • include: the IEP implement-ation, accommodations, modifications, assistive technology, curriculum, diploma options, transition, and post-secondary education.IEP Workgroups designed to help • you further explore your child’s educational needs.Five IDEA Webinar Series - each • thirty minute induration to help you increase your knowledge about the law from the comfort of your home or office.Face to Face meetings to help you • design action plans and ongoing coaching to achieve your desired outcomes.

Parent to Parent of Miami is funded to help you, help your child. For more information please contact Parent to Parent of Miami at 305-271-9797 or visit our website at www.ptopmiami.org

The workshops and services listed in this article are provided by Parent to Parent of Miami with funding support from the U.S. Department of Education, Office of Special Education Programs and The Children’s Trust. For more information about the Parent Center funded in your area visit: www.parentcenternetwork.

Improving Outcomes for Children with Disabilities Requires More than Attending a Meeting!

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P lanning for Your Child’s Financial FutureAs a parent of a special needs child, you want to make sure that your child will be able to maintain the same quality of life that he or she now enjoys when you are no longer able to care for him or her due to your own illness or death. To do so, you must take certain critical steps. Understand that it is never too early to plan for the financial future of your special needs child so START NOW.

To begin the planning process, you must first decide what you want in the future for your special needs child. Issues that need to be addressed at this point include where your child will live, future education plans, and whether some kind of employment is expected. In addition, your child’s social life and religious preferences should also be addressed. Lastly, and of utmost importance, any special medical care issues must be addressed.

Next, you will want to write a “Letter of Intent” for your child, a document whose purpose is to set forth your hopes, desires and goals for your child as it relates to his or her future. The information contained in the “Letter of Intent” will be used to provide guidance to your guardian, advocate, trustee of your child’s special needs trust (discussed later) and any others who will be involved in your child’s

life. Next, you will want to choose an advocate and possibly a guardian for your special needs child. This is the person (or persons) who will be responsible for carrying out your wishes as expressed in your letter of intent. This person should be someone you trust, and, if possible, someone who has a strong current relationship with your child, such as a family member, friend or other trusted party. You may also consider a charitable group, commercial organization, or public guardian.

Next, you will need to determine the amount of money that will be required to meet the future needs for your child. To do so, you should first examine all aspects of your child’s future care needs with a particular focus on the cost of providing all the goods and services he/she will require. A good place to start is to develop a budget for your child based upon the assumption that you are now deceased and then account for your child’s needs and requirements. You will then be able to determine how much additional funding you will need to provide in order to assure that your child has a good quality of life. You will also need to examine your own personal financial planning situation so that you can see how much of your estate would be available for funding your child’s future needs deficit.

As part of the planning process, you should have your Last Wills and Testaments carefully drafted (both parents) so that they leave nothing to your special needs child; rather, the wills should leave your child’s share a special needs trust which is addressed in further detail below. Other appropriate legal documents such as powers of attorney (POA) for both parents should be prepared as well. And, you should consider the need for a guardian or a POA for your child. During the planning process, you may want to consider establishing a special needs trust for your child which will hold and manage all funds left to your child for the rest of his/her life. Ideally the trust should be drafted so that it can be used while the parents are alive (a “living” trust) and will be treated as a fully “discretionary” trust.

As the parents will be the ones who establish a special needs trust for their special needs child, they are normally in the best position to manage the trust funds for the benefit of their child. As such, parents generally serve as the original trustees of the trust. However, when establishing the trust, you must also choose “successor trustees” who will serve after you are gone. You may choose individuals as successor trustees or professional trustees as

by Andrew Feuerstein

7

successor trustees, but, whoever you choose, they must understand or be made aware of the various complexities of managing a special needs trust.

Special needs trusts were designed to assure a “Quality Life” for your special needs child. They accomplish this by maintaining your child’s eligibility for all current and future government benefit programs as well as providing for those areas of need not provided by the government programs. When properly drafted, these trusts have a lot of flexibility in paying for all those extra things that will enhance your child’s Quality of Life. Once your child’s funding needs are determined and the special needs trust has been established, you will need to decide how you are going to actually fund your child’s trust. You will previously have determined how much the funding deficit was based upon your child’s needs as well as your resources. At this point, you need to select which resources to earmark for your child’s trust.

The first thing parents need to know is that some resources are much better than others for funding a special needs trust. Life insurance proceeds are probably the best way to fund a special needs trust (the best types of policies, called “joint survivor” or “second-to-die” policies, are

ones that insure both parents and is payable only after both are deceased), whereas retirement funds may be considered the worst. However, using other kinds of investments such as savings, mutual funds, stocks and bonds to fund the trust are generally good choices too.

Once the drafting of your child’s Life Plan and related legal documents is completed, it is useful to organize them in a folder so that they are always readily available. These documents include those such as your letter of intent, special needs trust, wills, POAs, guardianship papers, government documents/correspondence such as SSI and Medicaid card, and information about funds earmarked for your special needs trust.

You should meet with all parties who will be involved with your child’s life and provide each person with copies of relevant documents (i.e. Letter of Intent, Life Plan and Special Needs Trust) so that you can explain to them and make sure they understand their respective roles. Also, you should inform all other immediate and extended family members (particularly grandparents) about the creation of the special needs trust in case they want to give or leave something to your child. Once you complete your child’s

Life Plan, you will need to review it on a regular basis (once a year is recommended). You must understand that many things can change in your child’s life and in the state and federal laws that govern benefits that he/she receives. You should also check to see if any financial or legal changes have occurred that would affect your child’s Life Plan. If you follow the steps set forth above, you, as a parent of a special needs child, will no longer have to be concerned with your child’s financial future will be taken care of.

Information provided by:

ANDREW S. FEUERSTEIN, ESQ.FEUERSTEIN LAW, P.A.

2501 BRICKELL AVENUE, #403, MIAMI, FLORIDA 33129

(305) 285-9686feuersteinlaw@aol.com

If you have any legal questions regarding special needs planning or disability issues that you are facing, please send your questions to info@directionsmagazine.com. We will select a handful of questions to be answered in upcoming issues of Directions Magazine by Mr. Feuerstein, a South Florida disability/special needs attorney. The remainder of the questions will be answered privately.

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Wh e n asked “Who was an influential figure

in your life?” Pretty straightforward question, right? Next to mom and dad, people generally have the same answer: a teacher. Most of us remember that one teacher in grade school who taught you to look at math in a different perspective and got you to understand it, or that English teacher in High School who made you read one book that changed your life. Maybe that teacher never got the recognition you feel he or she deserved. For this edition of “Spotlight,” we’re illuminating the achievements of a pre-kindergarten teacher who got about as much recognition as any other teacher – until recently.

Alexandre Lopes, a native of Petrópolis, Brazil, is a special education teacher at Carol City Elementary. Many of the students in Mr. Lopes’ pre-k class have autism. Some start off the school year with little to no language skills, not able to speak or make eye contact with their teacher. With Mr. Lopes’

individualized help, these delays are usually corrected by winter break. For all of his hard work and dedication, Mr, Lopes was named the 2013 Teacher of the Year for Miami-Dade County Public Schools.

1. What drove you to pursue a career in education?

When I was a little boy, and people used to ask me what I would like to be when I grew up, I would always answer them that I would like to become a teacher. However, when it was time to start my undergraduate studies, I decided to go into publishing. At the same time I made that decision, I also applied for a position in the airline industry in order to support myself through undergraduate school in Brazil. I graduated from the Universidade Federal do Rio de Janeiro, but I continued to work in the airline industry – it was difficult to give up the benefits and what they afforded me to do. I always had a passion for languages and cultures, and the travel benefits enabled me to fulfill my dream of traveling the world.

2. Did you always want to focus on teaching children who have special needs?

I enjoyed every moment of it. Then, about a decade ago, I realized that something was missing in my life, that it was time for me to pursue a different career. The only thing I could think of was a career in education. However, at the time, I was unaware that the special education field even existed. I thought that I wanted to teach foreign languages.

With that idea in mind, I went to see a counselor at Miami Dade College in order to find out the best route to pursue that goal. The counselor and I spoke for almost an hour. At the end of our conversation, she said to me, “Are you sure you want to teach foreign languages? Why don’t you teach special education? You have the right personality for it. In addition, we need people like you in that field.” I told her that I had never heard of it. She took the time to explain to me what special education was all about, and she encouraged me to

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take an introduction course in special education to see if I would like to pursue it.

vI took the course, and I immediately knew that I had found what was missing in my life. Since then, I concluded a master’s program at the University of Miami that focused on early childhood intervention, and I am currently enrolled in my fourth semester as a doctoral student at Florida International University, where I have been awarded a full scholarship.

3. How does the LEAP program differ from traditional education and even previous methods of Exceptional Student Education (ESE)?

Most of my teaching has been carried out in a LEAP classroom. Therefore, I don’t think that I am the best person to make comparisons. What I do like about the program is that it focuses on social skills and it uses an inclusive setting to embed such skills in every educational activity conducted in the classroom. Students with autism and typically developing peers are taught the same social skills curriculum in a systematic and consistent manner. This approach allows adults and typically developing students in the classroom to initiate social interactions with students with autism and to respond to their social initiatives in a coherent manner, thus facilitating the learning of the targeted social skills by the students with autism.

4. What do you see as the biggest challenge to your work? What do you think are the greatest educational challenges facing parents of children with special needs?

The biggest challenge in my work is that my students are all very different from one another. What works

perfectly well for one student may not work at all for another. Getting to know the students in order to find out how to optimize their progress is very important and very challenging. However, I consider it to be one of the aspects of my practice that I like the most.

As for the greatest educational challenges facing the parents of children with special needs, I think they have to do with the lack of awareness by society in general of what it means to have a child with a disability, which makes it necessary for these parents to constantly have to advocate for their child. I can only imagine how arduous and challenging this necessary advocacy must be for the parents of children with special needs. 5. If you could change something about our educational system, as it relates to students with special needs, what would it be?

I would not focus on our educational system; I would target our society in general. As I said before, the lack of awareness by society of what it means to be a person with special needs and of what it means to have a child with special needs makes the journey of these individuals in life substantially more difficult than it ought to be. I believe that if we took the time to educate ourselves and those around us about the challenges of such individuals and their families, and if we did not take so many things for granted in life, we would be able not only to facilitate the integration of individuals with special needs into our society but also enrich our experiences as human beings.

6. What resources would you say are lacking that would make a significant difference for these students? And for their parents?

I think that we need better resources at the teacher preparation level. Are we preparing general education teachers to lead inclusive environments? Are we preparing general education teachers and special education teachers to work together in the same setting, to collaborate with one another toward the educational success of our students with special needs? Are we preparing the aforementioned professionals to deal with cultural reciprocity, to know how to maneuver between their home culture and the home culture of their students’ special needs? These are important issues in the field of education in general and special education in particular that, if not properly addressed, will delay the successful implementation of inclusive programs in our schools; which, in turn, will setback the full involvement of society in the wellbeing of individuals with special needs and their families.

7. How does the selection or nomination process work for Teacher of the Year?

First, my professional colleagues at Carol City Elementary, through a voting process, named me the school’s Teacher of the Year. Next, I put together a package containing my teaching philosophy and practice, my educational history and professional development activities, and three letters of recommendation. Based on the package, the regional committee – in my case the North-Central Region committee – selected me and four other teachers as regional finalists. The committee, then, visited each one of us at our schools, observed us in our classrooms for thirty minutes, and interviewed our principals, one of our professional colleagues, and the parent of one of our students. The following day, we, the finalists, had to dress in formal attire and meet with the committee for a thirty-minute interview and to write an essay, in

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thirty minutes, on a surprise topic. Finally, the North-Central Region committee selected me to represent our region as a finalist for the Miami-Dade County Public Schools Teacher of the Year Golden Apple Award.

The process at the district level was quite similar. Each one of the finalists met in formal attire with the district committee for an interview that lasted a little less than an hour and to write yet another essay, in thirty-minutes, on a surprise topic. The following day, the committee visited me at my school and observed me in my classroom for a full hour. Following the observation, the thirteen members of the committee conducted a follow-up interview with me. In addition, to observing and interviewing me, the district committee interviewed my principal, one of my colleagues, and the mother of one of my students. (The same process was conducted with each of the district finalists.) Finally, on Friday, February 3, during the Teacher of the Year Award Ceremony, Superintendent Roberto Carvallo awarded me with the Golden Apple Award and with the title of 2013 Francisco R. Walker, Miami-Dade County Teacher of the Year. What an honor!

8. What did winning the Golden Apple Award and being named Miami-Dade County Public Schools Teacher of the Year mean to you?

I was not the only winner; v had the good fortune of meeting the other finalists, and I am confident to say that we are all winners.

The award means the world to me. It means recognition to my students and their families. It represents acknowledgement of the work that pre-k and pre-k special education teachers do. It signifies the appreciation of the teamwork that exists at Carol City Elementary, the school in which

I work. Above all, I believe that by selecting me to receive the award, our society is trying to say, “We want to know more about the individuals with disabilities with whom you work. We want to get involved. We want to enrich ourselves with their experiences.”

9. What is the most rewarding thing about the work you do?

To see my students do independently today what yesterday they did with assistance. And, on a selfish note, to hear they call my name, knowing that they could not speak a word at the beginning of the year.

10. What would you, as a veteran teacher, say to a beginning teacher who has chosen to work with

students that have special needs?Keep yourself informed of current trends, research based practices, and best practices associated with the field of special education in general and with the student population with whom you grow on a daily basis in particular. Listen to the families of your students with your entire body and soul. You will be amazed to find out how much you will learn from them and how much you will be helpful to them and to their precious ones just by listening. Enjoy it. You will have the time of your life.

On behalf of Directions Magazine, congratulations, Mr. Lopes, on a job well done!

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“Sitting in the car on that cool, bright

December morning, both

mom and dad made a

deal that they would do

whatever it takes to get

their son the best treatment

possible and help him

reach his full potential.”

In December of 2006, two completely different families were blessed to welcome new baby boys into their lives. Wendy and William from West Florida welcomed their baby boy just day a few days after Emily and Edward in the East welcomed their own. As the first child for both young families, the couples were both excited and cautious as they began to take their first baby steps down the long, strenuous journey we know as parenting. On two sides of South Florida, East and West, two cases of autism began to unfold.

The first six months of life for the newborns were exciting and exhausting. The East family and West family had late nights, early mornings and the nine to five hustle. Living room walls became flooded with family portraits and baby glamour shots. All the joys (and stressors) of a newborn baby boy were radiating from these young families’ homes, and the bags under mom and dad’s eyes became part of their “natural” everyday looks. Small sounds and noises, such as the classic “gaga” were coming from both babies – the boys were reaching out to things, recognizing their mothers, and making it clear when they wanted and needed things.

In December of 2007, Emily began to notice some alarming symptoms. Her son was no longer making noises as he had been for the last six months or so. He became overly averse to having clothes on, and wouldn’t make eye contact with her. At one point, she walked into the living room where

he was sitting, called out his name, walked in front of him, and he didn’t notice her presence. That day, mom spent the entire night Google-ing, WebMD-ing, searching frantically. It was becoming increasingly alarming that her first born child may be a part of the ever increasing population of children with autism.

At the same time, across town, the west family was cooking dinner was cooking dinner when Will noticed his son flapping his hands up and down continuously. Not too alarmed, he got his wife. They watched at their son continued this strange behavior. Not thinking much of it, they laughed a little, took a picture, and continued cooking dinner.

A week later, the East family took their child to a speech therapist. They began sessions once a week for an hour or two, hopeful to regain the language development that their son had suddenly lost. After a few months had gone by, improvements were seen - and his parents were extremely happy about them. To their dismay, however, his strange and now destructive behaviors were increasing. In day care, he would hit other children and seek self-stimulation by banging his head against the wall and eating inedible objects. After a short denial period, mom and dad spoke to pediatricians, professors, and family friends in the psychology field. They asked themselves what they had done wrong – Emily’s head was flooded with guilt and fear: “was it something I ate during pregnancy?”, “does it

by Brett Warner

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run in my family?”, “why me?” Unfortunately, after all the research and consulting possible, the answer was still unclear and the only thing to do was to schedule an appointment with a pediatric neurologist.

Meanwhile, in the West, Will began to become alarmed. Temper tantrums, no language development and continuous self-soothing activities plagued his son. His wife Wendy, however, refused to believe that their son was anything but normal. She would panic and fight with her husband - sometimes even contemplating divorce. Approaching two years old, the family was spending a fortune on nannies (one after another) to care for their child as they both worked full days. Preschools couldn’t handle him, and the nannies lasted a month or so before the search was on and

grandma took on the responsibilities- a task too overwhelming for her.

December 2008 was quickly approaching – on one side of town, the East family was pulling into a medical center to see a neurologist, a few mumbling sounds emerging from their son in the car seat. On the other side of town, the West family son’s bad behaviors were being reinforced, learning interfered with, and there seemed to be no refuge in sight.

Our East Floridian family anxiously awaited their appointment.

Our West Floridian couple laid in

bed, screaming coming from the crib, wondering what they could possibly do – Will was convinced it was time to make moves. He couldn’t bear the thought that his son had no playmates and would struggle, kick and scream when he tried to give him a hug. Wendy was convinced it was all just a phase, and would soon pass.

A few hours later, with a letter of diagnosis in hand, the East family got back into their car. To their dismay (but not surprise), their son would celebrate his two year old birthday as an officially diagnosed autistic child. They had been strongly recommended to seek treatment from a behavioral therapy service, and continue their speech therapy. Sitting in the car on that cool, bright December morning, both mom and dad made a deal that they would do whatever it takes to get

their son the best treatment possible and help him reach his full potential.

Emily immediately began her frantic research. She learned about ABA (applied behavior analysis therapy), about Florida’s mandate for autism treatment coverage, and began making phone calls. Edward looked up his employer’s health insurance benefits, spent hours on the phone, and finally understood that he was eligible to get behavioral therapy covered for his son due to his group insurance policy and Florida’s mandate for coverage.

December 2011 – after a disastrous first half of a school year with their son

in special education classes at a very expensive private school for children with disabilities, Wendy began to get over her denial. At almost five years old, her son still wasn’t speaking. He was throwing objects at his teachers and his family, using diapers, biting off his nails and screaming four times a day until his voice would fade away. He had no chance of beginning to learn at his age level because of his behaviors, and things were only getting worse.

On his fifth birthday, the West family pulled into the same parking spot visited nearly three years earlier by the East family. They awaited their appointment with the neurologist, their son rocking side to side, with bleeding finger nails.

A few hours later, the denial had lifted. Their son was autistic and, with years

of reinforcing bad behaviors and with no proper treatment, he was on the lower end of the spectrum. Will, who had been prepared for this news all along, took the neurologist’s advice to seek out behavioral interventions and began to call around town. After a week-long fight with his wife about paying their health insurance’s deductible (she felt it wasn’t worth it), they finally enrolled their child in an intensive ABA program.

A year later, December 2012, both families had seen improvements, The East family son sits in a normal first grade class. His parents had to put a lot of therapy on their credit cards,

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even after their insurance paid for a good portion of it, but the cost to them was considered an investment. Over the last three years their son had had intensive in-home therapy programs. They were as involved as they could possibly be, took part in their son’s therapy sessions, and tried to integrate what they saw in therapy into daily life. He was playing with other kids, speaking, and just started learning math problems in his ABA program.

Over in the West, Will and Wendy’s was still in special needs classes, but the frequencies of his maladaptive behaviors had dramatically decreased. He was no longer being self-injurious and, at last, would share a sentimental hug with his teary-eyed father (every once in a while, at least). The time wasted for him was never brought up, and the entire family was just glad that something had finally been done. Although their financial situation didn’t allow them to get the extremely intensive programs recommended to them by providers, they were still able to see the need for their son to receive intervention, and were happy to provide him with as much therapy as they could afford.

As we enter into a New Year and begin to live out our New Year’s resolutions, think about this: Hundreds of families in South Florida alone are reminiscent of both the East and West family’s stories. Many families sink deeply into denial when they feel their child is anything but “ordinary,” wasting precious time to get their child the help that they need and ignoring the fact that “ordinary” is subjective. On the other hand, many families immediately begin researching, consulting, and providing their child with the necessary interventions many research organizations and universities deem completely essential to helping children with

autism reach their full potential. Today, with laws in Florida mandating certain health insurance coverage for families with autistic children and many local resources available to help these children receive treatment, 2012 is a great year for families to begin programs that will change their children’s lives in the long-run. Make the commitment if you or someone you know is in the need of therapy for their autistic children.

FreshStart(s) Behavioral Therapy, located In Miami, FL and servicing families from the Upper Keys to Boca Raton, has created a process to help ease the burden on these families, no matter what stage of the process they are in. Whether pre-diagnosis, or following eight years of denial, FreshStart(s) has made a New Year’s resolution to help families seek the proper counseling, recommendations and treatment necessary for their child.

This year, FreshStart(s) has resolved to help all families in need of navigating the complicated world of autism. Give them a call at (305) 279-2286 to speak with one of their team members, or visit their website (www.FreshStartsNow.com ) to be directed to highly recommended professionals in the South Florida area who can help assess and diagnose children suspected of having an autism spectrum disorder.

If you have (or even haven’t) already received an autism or related diagnosis, they would be happy to help guide you through the hurdles of getting i n s u r a n c e c o v e r a g e for essential therapies.

If you are in the need of counseling to determine what the best type of therapy your child may need is, they would be happy to recommend you to some great community organizations.

If you already have received a diagnosis and you are interested in beginning an ABA program, contact them if you would like them to retrieve your insurance benefit information (if applicable), and receive a free consultation (just mention you read the Directions article).

The consultation will explain to you in depth, exactly what it is they do and answer any questions you may have about ABA, the therapy itself, the assessments and curriculum used, and all of their program’s features (listed below). If you do not feel you are a good match for their organization, they will gladly help you find an organization that you would be able to work with. Their resolution is to help.

So take 2012 as a year to get fit, quit smoking, eat healthy, and help a family begin a life-changing program for their child. The short-term costs today will be well worth the long-term savings of the future. More information on FreshStart(s) is explained below, as well as their contact information. May everyone have a prosperous 2012 full of many breakthroughs and successes!

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The first cochlear device to be successfully implanted in a patient was invented by a team of scientists in in 1978 led by an Australian professor of otolaryngology named Graeme Clark. The invention was based on principles first tested in the 18th century by Count Alessandro Volta, an Italian physicist who developed the electric battery and after whom the volt, a unit of measurement of electric potential, is named. Volta wanted to stimulate hearing by applying electric currents to the ear. His experiments involved attaching two metal rods to batteries and inserting a rod in each ear. When the circuit was completed, Volta received a jolt to the head and reportedly heard a bubbling or crackling noise.

Today, more than 200 years after Volta’s experiment, over 200,000 people use cochlear implants to hear and an increasing number of cochlear implant recipients are children, some as young as five months old.

The device itself is simple, consisting of a receiver secured in the bone beneath the skin and a stimulator that winds itself through the cochlea. It is implanted through an incision behind the ear. The incision takes a few weeks to heal, at which point the patient is outfitted with the external components. The external components begin with a microphone worn behind the ear, much like a hearing aid. A magnetic transmitter adheres to the

metal implant under the skin, along with a speech processor that helps to filter audible speech. The transmitter sends a signal to the electrode, which then uses small amounts of electricity to stimulate the auditory nerve fibers which the brain processes as sound. Since the external components are held in place solely with magnetic force, removing the external equipment means simply pulling it off.

The results are stunning. Babies are especially keen to the cochlear implant, showing responses as soon as it is activated. Children that are slightly older and may have been using hearing aids usually require more therapy to get acquainted with new sound but, regardless of age, implants in children are usually viewed as a success and are considered the go-to procedure to cure deafness in children.

But some people who are deaf or hard of hearing see the proliferation of cochlear implantations as an affront to their culture. Long before the advent of the cochlear implant, groups of people with hearing loss or impairments all over the world had independently developed their own unique forms of non-verbal communication. Contrary to widespread belief, there is no universal form of sign language. The most commonly used signed language in the U.S. is American Sign Language. The growth and evolution of these languages has led to Deaf

culture, whereby a group of people that is affected by deafness (directly or indirectly) and use sign language as a main form of communication can identify as members of the Deaf community. When used as a cultural label, not as the name given to a loss or lack of hearing, the word Deaf is capitalized, the way you would capitalize American. However, one must consider the fact that 90% of children who are deaf are born to hearing parents. Because of this, children who are deaf or hearing impaired usually learn sign language at school, or otherwise outside the home. For the mother or father who suddenly discovers that they won’t be able to communicate with their child without learning a new language themselves, the diagnosis can become a scary one. This is why so many children born deaf today are receiving cochlear implants.

To get a better idea of the procedure and the decision making behind it, Directions interviewed Alex DeMolina. Alex’s daughter, Kiersta, was born with bilateral hearing loss.

by Evelyn Venagas

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She was born at 35 1/2 weeks and monitored in the hospital’s Neonatal Intensive Care Unit (NICU) for 13 days, but otherwise emerged a healthy baby girl.

“When she was in the NICU, Kiersta was given a newborn hearing screening, which is required in most

states. She was given the screening 3 times and each time failed. I can’t say enough how important these newborn hearing screenings are. It was our first indication that something was not all right.” Alex said.

Alex’s concerns were brushed off; the screening technician telling her and her husband, Brian, that it was just fluid in the ears, and the pediatrician being hesitant to take them seriously. Finally they received a date for an ABR (auditory brain stem response).

“It was March 17, 2010 when our world turned upside-down. At just 5 weeks old, Kiersta received her 1st ABR with an audiologist. They confirmed that Kiersta has a hearing loss and it was showing to be a significant one. At that time, we were told that Kiersta has a severe to profound bilateral

sensorineural hearing loss. One ear might be better than the other; however she was hearing around 90-95 db. When I explain it to people, I use the analogy that she hears at a lawn mower level.

“After the appointment, I got on the phone with my mom and cried and

then I called Brian because he was at school during the testing. My mom was wonderful and very supportive and Brian was very calm. They both let me know that everything was going to work out.”

Alex and Brian began researching cochlear implants and, from the very beginning, knew this was a step they absolutely wanted to take. Kiersta’s ability to listen and speak was going to depend on the implant and how soon she could have it. She was enrolled in

Early Steps and Children’s Medical Services.

“The first place where we were actually taken seriously was at the Barton G Kids Hear Now Foundation, based in Miami, Florida. My mom saw an article about them in The Miami Herald and I sent an email introducing our family. We received a wonderful reply and met with the doctors at University of Miami’s Cochlear Implant Center. We received confirmation that indeed Kiersta was a cochlear implant candidate. “We are so grateful for their expertise and time that was given to us and even more so when they let us know about Auditory Verbal Therapy. The audiologist informed us that there is an excellent place for AV Therapy right here in Tampa, called the Bolesta Center. Shortly after this trip to Miami, we met with Judy Horvath, MA, LSLS Certified Auditory Verbal Educator (who is now the Director of Barton G Kids Hear Now Cochlear Implant Family Resource Center) and Kelly Teegardin, CCC-SLP. At 4 months, Kiersta received her hearing aids and started weekly AV sessions

with Kelly.”

Though Kiersta’s services were covered by M e d i c a i d , Medicaid only covered the cost of 1 implant. Also, Medicaid did not allow for Kiersta’s application to even be submitted before she was a year old, and on June 2, 2011, she finally received her implant at 16 months.

“I can’t say enough how important these newborn hearing screenings

are. It was our first indication that something was not all right.”

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Alex shared the videos of Kiersta after her surgery and on the date of her activation. Just 5 hours after the surgery she was already out of bed and playing as usual. Though it seems like a major surgery, it is usually performed as an outpatient procedure. The implant was activated

on July 29th, 2011, and the results were nothing short of spectacular. As soon as the implant was turned on, Kiersta’s eyes lit up at the sound of her mother’s voice and, with each adjustment of the volume, she became more and more aware of all the sounds around her, responding to each one with a resounding smile and giggles.

While there is no doubting the success of the implant, Alex has mentioned that she knows it will be important to remember that she cannot solely rely on technology for communication. Since their brand of implant isn’t waterproof, they must find ways to communicate while bathing and swimming, when the device is removed. But, as both of Kiersta’s parents are reliant on spoken language, sign language is not a necessity for them yet. The auditory verbal therapy which Kiersta is currently undergoing has proven to be success, as her vocabulary grows and grows each day.

“In everyday life, I can’t say I forget

that she is deaf, but I rely heavily on spoken language to teach Kiersta about the world. It is our goal to have Kiersta mainstreamed in school and, since the popularity of cochlear implants is increasing, we do not feel

that we are going to be met with much opposition. We are going to teach Kiersta to be her own advocate and to make her own decisions as to where she belongs in the world.”

“As soon as the implant

was turned on, Kiersta’s eyes lit up at the sound of her mother’s

voice.”

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Parenting a child with a learning disability is challenging and difficult. Children with learning

disabilities or special needs process the world very different than other children. Sometimes, their behavior is unpredictable, inconsistent, and full of emotional ups and downs. As a parent of a child with a learning disability, you are usually caught in this whirlwind of emotions and often feel drained of energy on many levels. Ultimately, what you wish for your child is that he/she may learn to live a happy and fulfilling life despite their disability. With parental encouragement and support, children with learning disabilities can become empowered to succeed in school and in life!

Children with learning disabilities often feel powerless and inadequate. Parents can empower their child to view learning obstacles as challenges. A learning disability is one area of weakness – one area of difficulty. It does not define the child in their totality. This is simply an area of weakness in their life. Parents can help their child become aware that they have many more areas of abilities and strengths. Help your child see that he/she is able to do other things well. Sit down together and make a list of all of the areas where he/she excels. Place this list in a prominent place in the house such as the refrigerator or their bedroom door where they will see it frequently and will serve as a reminder of what they are good at.

Children with learning disabilities begin to notice early on in life that they have more trouble doing things than other children. This begins to create a level of doubt in themselves and their abilities. It leads to frustration and sometimes causes the child to withdraw from family, friends, and activities all together. Therefore, building a child’s self-confidence is key to their emotional well-being. Helping your child build a healthy self-esteem and self-concept begins with being aware of what you say to your child. Kids are very sensitive to parents’ words. Remember to praise your child not only for a job well done, but also for effort. If your child studied hard for a test and still did not receive a passing grade, validate the fact that they put the time and effort into trying. Reward effort and completion

instead of outcome. Listen to and identify the words he/she uses to describe themselves when it comes to looks, talent, or intellectual abilities. More than often, children with learning disabilities have irrational thoughts about their abilities. When you help your child set more accurate standards and be more realistic in evaluating themselves you will help them have a healthy self-concept. Inaccurate perceptions of self can take root and become reality to kids. Try writing affirmative statements together that begin with the words, “I can… or I am…” Have your child fill in the blanks with positive statements about themselves and their abilities. Once again, post these statements somewhere he/she will encounter them often.

Life skills such as structuring time and organizing are two challenges for children with learning disabilities. Empower them by providing clear structuring of time and developing routines that are consistently reinforced. Even though a child can tell time, they usually have don’t have a grasp of how long a task will take them to complete it. Develop a sense of their individual pace when completing a task, is essential for students to learn time management. To help with transitions from one activity to the next, for example, tell students they have five minutes to finish their work, and set an alarm to signal when time is up. Raise time awareness by pointing out conflicts as they occur. “You have time to either play your game or go to the movies.” Allow them to make the choice when it doesn’t involve a “must do.”

Students who have learning disabilities need high structure, explicit teaching and extended opportunities to practice strategies until they develop independent skills. To assist your child with organization skills, break

by Jeanette Melian

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routines and other tasks into simple steps or chunks while communicating what needs to be accomplished first, next, and last is important. For younger children, use visual aids for the steps in a process. Organize for each activity they are required to do: a hamper for dirty clothes, closet rods they can reach, dresser drawers with enough space to stow things neatly,

and bins labeled with the contents for toys or art supplies. Prepare the things that need to be ready for the following day the night before. Choose clothing, gather books and assignments, and designate a place where it will go so it won’t be forgotten in the morning. For longer school projects, create a timeline on a calendar to schedule the tasks needed to complete the project in a timely manner. Make your child responsible for checking the calendar on a daily/weekly basis to see what the next step is towards the goal. Help your child maintain his/her school folders and binders by going through the papers with him/her, putting things in the correct order, and discarding unneeded items.

Each and every one of us – learning disability or not - has a unique way of learning. Each of us has a way in which information is best processed and understood. This learning style may be visual, auditory, or kinesthetic. Helping your child understand which style best meets his/her learning needs empowers them to use that mode more frequently.

If your child is a visual learner, he/she:

Learns best by seeing or reading• Better understands material that • is presented in diagrams, charts,

maps, or pictures

To empower the visual learner at home:

Create flash cards that are color • coded or highlighted.Use computer programs, videos, • and visual aids.Have them draw or illustrate the • information.

If your child is an auditory learner, he/she:

Learns best when listening to the • informationMay love music and language•

To empower the auditory learner at home:

Read information out loud.• Study with someone else • discussing the information out loud.Listen to books on tape that are • read to them.

If your child is a kinesthetic learner, he/she:

Learns best by doing and through • movement.Does well with activities that • require touching, exploring and creating.

To empower the kinesthetic learner at home:

Provide opportunities for • activities that are hands-on.Use games and manipulatives.• Incorporate movement into the • learning sessions.

When it comes to empowering children with disabilities, the point is that we raise their awareness of themselves as a unique individual, raise their awareness of their abilities, and raise their awareness of their habits. Self awareness leads to self empowerment. As a parent, your hopes and dreams for your child are that he/she grows up to be well-adjusted, happy, and healthy. Focus then on life success rather than just school success. You will empower your child more on their journey by teaching them the lessons of LIFE, than the lessons taught in school.

BioJeanette Melian is a passionate and energetic individual who motivates, inspires, and empowers others to transform their lives! Born and raised in Miami, FL to Cuban immigrant parents, she knew early on that she wanted to be a teacher. During her 19 years as an educator, she filled various positions as an educational professional. As an elementary school teacher, Literacy Coach, school administrator, and District Curriculum Support Specialist, Jeanette touched the lives of thousands of students and teachers alike. Jeanette now conducts workshops and seminars including, The Power of ONE that provides the tools necessary to help others overcome the barriers to achieve a life full of passion and purpose.

http://www.jeanettemelian.com

“Building a child’s self-confidence is key to their emotional well-being.”

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Silent LotusBy Jeanne M. Lee

Lotus, a beautiful, young Cambodian girl, is unable to hear or speak. Ostracized by the other children, she is lonely and sad until her parents take her to the local temple. There, she sees the beautiful temple dancers for the first time. Young Lotus is so moved that she begins to copy

the movements of the dancers, using the vibrations of the music to guide her. Through the dance and movement, she learns to

communicate and becomes a famous royal court dancer. Vietnamese-born Jeanne Lee brings the thousand-

year-old tradition of the Cambodian court ballet to life.

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FOLLOWING EZRAWhat One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son

by Tom Fields-Meyer

A heartwarming, intimate and amusing memoir of a father’s experience raising his autistic son.When Tom Fields-Meyer’s son, Ezra, was three and showing early

signs of autism, a therapist suggested that the father needed to grieve.“For what?” he asked.The answer: “For the child he didn’t turn out to be.”That moment helped strengthen the author’s resolve to do just the opposite: to love the child Ezra was, a quirky boy with a fascinating and complex mind. Full of tender moments and unexpected humor, Following Ezra is the story of a father and son on a ten-year journey from Ezra’s diagnosis to the dawn of his adolescence. It celebrates his growth from a remote toddler to an extraordinary young man, connected in his own remarkable ways to the world around him.

SIBLINGS OF CHILDREN WITH AUTISMA Guide For Families; Third Editionby Sandra L. Harris, Ph.D. & Beth A.

Glasberg, Ph.D., BCBA-D

This revised and updated edition takes a fresh look at what it’s like to grow up as the brother or sister of a child with autism – the basics of sibling relationships at all ages and how autism can affect these dynamics. Parents get important advice about balancing responsibilities for each child, encouraging their kids to share feelings, explaining autism to other children, and initiating play and interaction between siblings.This new edition includes case examples reflecting improvements in applied behavior analysis (ABA) techniques, new photos, an updated resource section, and tips on how technology can help siblings and their families connect with other families. Throughout the book, family case studies provide insights into how other families deal with common concerns and situations.

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Would you like to know about “the best-kept secret in Miami,” a “real hidden treasure” for children and adults with developmental disabilities? These are recent descriptions of The Learning Experience School (TLE), a non-profit 501(c)(3) school founded in 1977 and located in Miami. TLE is a school for children and adults with mild to moderate developmental disabilities including Down syndrome, other intellectual disabilities, and autism for whom cognitive and educational therapy is a daily necessity. To meet their diverse and specialized needs, TLE offers a unique curriculum in which students excel through individualized and small group instruction, personalized by means of periodic skills and learning assessment. There is a low student to teacher ratio (6:1) in all classes. Students range in age from 5 to 39, but babies as young as three months also participate in the infant stimulation program at the school.

History and BackgroundThe Learning Experience School was established in 1977 to provide babies and toddlers with the early intervention services so needed which could not be obtained elsewhere. The founders designed the school

to duplicate the most effective curriculum and teaching methods they could find . . . the University of Washington’s Model Program for Children with Down Syndrome and Other Developmental Delays. It soon became the official model of this program for the southeastern United States. The school was originally located in the First United Methodist Church of Coral Gables.

As new students entered the school and the original students continued to grow, no school existed to meet the new demands of their education. Thus, in 1984, TLE expanded into the world of elementary education by opening its first Kindergarten through third grade class. Shortly thereafter, it expanded further and opened its fourth through sixth grade program. The elementary pro-gram provides a full academic schedule similar to a typically developing elementary classroom, but with the individualized and specifically targeted materials and instruction needed to ensure success.

In 1992, TLE expanded once again to include a middle school serving youngsters through the age of 13. To keep up with student growth and development, in 1994, following a successful capital campaign, the Secondary School, located at 5651 SW 82nd Avenue Road in Kendall/South Miami, opened serving adolescents and young adults with disabilities between the ages of 14 and 22. The secondary school provided for high quality academic, home living, community based, and vocational learning. In 1997, TLE’s secondary school began preparing students for future independent community employment by collaborating with various community organizations such as the Homestead Motorsports Complex, Florida International University, Toys-R-Us, and Publix Supermarkets to provide job-training opportunities.

In 2009, The Learning Experience found itself at another crossroads with the need to provide necessary, functional, and beneficial continuing education for its graduates and now adult learners. Thus, the elementary and secondary campuses united and the Shannon Center were born. The

by Dr. Susan Hildenbrand

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Shannon Center program serves adult learners who have attended the Secondary School, graduated with a Special Diploma, and are 22 years of age or older. It provides an opportunity to continue to grow academically and personally, apply the skills already learned in an individual work setting, and begin to experience life socially. Some of the original students for whom the school was founded back in 1977 are still students now. Here are some pictures of our students

“then” and “now.”

top: allen Bottom: oliver

ProgramsThere are three program levels at The Learning Experience School: Primary, Secondary, and Shannon Center. Here is information about each program.

Primary Program: This program includes students in both the elementary and middle school grades. This program provides students with the opportunity to develop and refine skills in reading, math, spelling, and language, as well as in writing, health, daily living, language arts, fine arts, social studies, and physical education.

Secondary Program: There are four cornerstones to the curriculum in the secondary program: academics, life management, community-based education (CBI),

and career education. Community-based instruction (CBI) is designed to afford students the opportunity to practice and hone skills worked on within the classroom, that are followed by practicing in a setting where they will ultimately be used – the community. Career education is a program aimed at helping students prepare for life as well as for a job. Work exploration, or job training, is a subcategory of career education.

primary program Secondary program

Shannon Center Program: The program for adults (those older than 22) is an active one. A Shannon Center student’s day includes functional reading and mathematics, daily living skills, pragmatics, health and wellness programs including a walking club and “swimming for fitness” at A. D. Barnes pool, community based instruction (CBI), and fine arts. Shannon Center students also actively participate in volunteer job sites, such as “Experiencing the Garden” at Fairchild Tropical Botanic Garden and The Learning Experience School office. Adults at the Shannon Center also serve as “ambassadors” to The Learning Experience School and may assist with scheduled tours and/or visits.

art claSS and FitneSS activitieS

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Holistic Approach to Education (the “Extras”)

vThe Learning Experience School believes in a holistic approach to education. What is a holistic approach? TLE believes in educating all aspects of an individual (mind and body), moving from the academic to the physical and to the recreational realms. It is providing all experiences available to students in “regular” schools. At The Learning Experience School, these special programs include large participation in Special Olympics activities (a middle school student broke a world record earlier this year), fine arts programs including music and musical theater as well as art classes (“Romeo and Juliet” and “A Midsummer Night’s Dream” were produced in prior years to rave reviews), homecoming game and dance, and the prom. Students also star as models in the annual fashion show held in the spring.

SummaryThe faculty, administration, and staff at The Learning Experience School believe that TLE is an average school, but its students are extraordinary! To adequately meet the needs of the marvelous, remarkable, (and yes, sometimes challenging) students, TLE must continue to provide innovative and creative programs and services as well as cutting edge technology. In other words, as Anatole France once said, “To accomplish great things, we must not only act, but also dream; not only plan, but also believe.” This is the core value of The Learning Experience School.

Special olympicS and theatre production

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What is Fragile X syndrome? Fragile X syndrome is the most

common form of inherited intellectual and developmental disabilities (IDDs).

What causes it? Fragile X happens when there

is a change, or mutation, in a single gene called the Fragile X Mental Retardation 1 (FMR1) gene. This gene normally makes a protein the

body needs for the brain to develop. But, when there is a change in this gene, the body makes very little to none of the protein, which can cause the symptoms of Fragile X.

How common is it? Conservative estimates report

that Fragile X syndrome affects approximately 1 in 2500-4000 males and 1 in 7000-8000 females

What are the symptoms of Fragile X? Do they differ between males and females?

Not everyone with Fragile X has the same signs and symptoms, but

Dr. Eugene Hershorin is the Medical Director of the internationally acclaimed Behavioral Pediatrics Clinic at the University of Miami’s Miller School of Medicine as well as an Associate Professor of Pediatrics at the

school. Dr. Hershorin has been practicing medicine since 1976 and has focused on behavioral and emotional disorders of childhood, learning disabilities and developmental disorders, just to name a few. He is a fellow of the American Academy of Pediatrics and has been voted one of the best doctors in America six times. Today Dr. Hershorin shares with us his knowledge of Fragile X syndrome.

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they do have some things in common. Symptoms are often milder in girls than in boys. Here are some common signs of Fragile X: Intelligence and learning – Many people with Fragile X have intellectual disabilities. These problems can range from mild learning disabilities to more severe IDDs. Physical – Teens and adults with Fragile X may have long ears, faces, and jaws. Many people with Fragile X may also have loose, flexible joints. They may have flat feet and be able to extend joints like the thumb, knee, and elbow further than normal. Social and Emotional – Most children with Fragile X have some behavior challenges. They may be afraid or anxious in new situations. Many children, especially boys, have trouble paying attention or may be aggressive. Girls may be shy around new people. Speech and Language – Most boys with Fragile X have some problems with speech and language. They may have trouble speaking clearly, or may stutter, or leave out parts of their words. They may also have problems understanding “clues” when talking to other people, such as understanding the speaker’s tone of voice or that person’s body language. Girls usually do not have severe problems with speech or language. Sensory – Many children with Fragile X are bothered by certain sensations, such as bright lights, loud noises, or the way something feels. Some do not like to be touched, or have trouble making eye contact with

other peopleBoys and girls can both be affected but, because boys have only one X chromosome, a single fragile X is likely to affect them more severely. You can have fragile X syndrome even if your parents do not have it.

How early can it be detected? What are the earliest signs that parents should be looking for?

Patients can be diagnosed before birth (during pregnancy) with certain tests done by amniocentesis. This obviously requires a suspicion high enough to warrant an amniocentesis. However, as soon as developmental delay is detected, a simple blood test can diagnose Fragile X Syndrome. And, of course, this test should be done in any child diagnosed with autism.

How important is early diagnosis and intervention?

It is critically important to make an early diagnosis, as we believe that the earlier we begin therapy and medication, the higher the potential level of improvement will be. Whether the intervention is therapy or medication, whether symptomatic or targeted therapies, we believe that earlier initiation will have better outcomes.

Can Fragile X and its symptoms be treated or managed?

For years we have treated the symptoms individually with a multitude of therapies and medications with varying levels of success. Recently, as the underlying genetic and biochemical defects are

being delineated, specific targeted therapies are being studied that have the possibility of improving or reversing some of the symptoms of Fragile X Syndrome.

What is the relationship between Fragile X and Autism?

Fragile X syndrome is the leading known genetic cause of autism, accounting for about 5% of cases. This finding has resulted in screening for FMR1 mutations to be considered mandatory in children diagnosed with autism. Of those with fragile X syndrome, prevalence of concurrent autism spectrum disorder (ASD) has been estimated to be between 15 and 60%, with the variation due to differences in diagnostic methods and the high frequency of autistic features in individuals with fragile X syndrome not meeting the DSM criteria for an ASD.

How are modern technologies affecting diagnosis and treatment of Fragile X?

Both pre- and post-natal diagnosis is very straight forward. However, new research is beginning to look at specific targeted therapies addressing the exact deficits with hope for reversal of symptoms.

Lastly, Dr. Hershorin, what was it about Fragile X that led you to study it so closely?

As a developmental and behavioral pediatrician, I am interested in the causes of developmental disabilities and their treatments.

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