Your Role as Your Child’s Advocate

Judith Canty Graves and Carson Graves are co-authors of Parents Have the Power to Make Special Education Work: An Insider Guide, and are the parents of a son with learning disabilities who is about to graduate from college. They live in Massachusetts.

As the parent of a child with special needs, one of your most9781849059701 important jobs is to be an advocate for your child in the school setting. You are vital to the success of your child’s education. You cannot be a passive observer; you need to be involved.

Here are some reasons why:

You Are the Only Permanent Member of Your Child’s Team

You are the only permanent member of the Team that decides what services and accommodations go into your child’s Individualized Education Program (IEP). New people who do not know you or your child will join the Team each fall and leave it the following spring. Occasionally a Team member might stay on for more than one school year, but most do not.

Schools Think Short Term, You Think Long Term

You and the school see your child’s education from different perspectives. In a way, this is natural since school personnel are focused on the current school year. You, on the other hand, are looking ahead to when your child becomes an adult. These different timelines can result in a source of conflict as you may want services that will help your child acquire skills needed in later years, but the school may only want to provide services that will meet more immediate needs.

As an example, students today are not given much instruction in handwriting and instead are taught keyboarding. But functional handwriting has not disappeared from the adult world. Our adult children will still have to fill out job applications or medical forms legibly by hand. Most of us are aware of other basic skills that may not have an immediate application in the classroom but which we know our children will need in later life. We have to be patient but persistent advocates for teaching these skills.

Skills Not Learned in School Have a Lasting Effect

Take the role as your child’s advocate seriously, because eventually your child will leave the public school. If he or she does not receive an appropriate education, who will help your child in a post-high school setting to balance a checkbook or fill out a job application? Many children who do not receive an appropriate education will need to take remedial courses after high school to learn skills they missed when they were younger.

What Parents Can Do

To become a better advocate for your child’s education, we recommend the following:

  • Periodically study your child’s special education documents in chronological order to better understand the progression of your child’s education. Trends will become apparent as you study the details and analyze the data over time. You must do this since Team members are transient and they don’t see the “big picture” that you can see. This exercise will show you the areas where your child has made progress or areas where he or she hasn’t.
  • Compare your child’s goals from year to year. If some goals never change, that means that either the goals aren’t appropriate or that your child isn’t making effective progress. Also compare the service delivery grid for each goal. Are the frequency and duration of services adequate to achieve the goal? If you notice that services are being decreased and the goal hasn’t been accomplished, you will want to discuss this with your Team.
  • Keep a notebook in which you record the important details of conversations you have with school personnel. If there are any action items, make them the subject of a follow-up letter or email to that person. If there are any misunderstandings about what was agreed to, this will help correct them before too much time and too many opportunities have passed. This improves positive communication with the school.
  • Keep a parent journal of your observations of your child’s experience. Record details about progress or lack of progress, and be sure to date your entries. Write in this journal on a regular basis and review it periodically. Progress almost always happens gradually, and you will only begin to see it when reviewing entries from past weeks, months, or even years.
  • Review your child’s IEP progress reports as you receive them. Compare the reports with the IEP goals and make sure these progress reports reflect your own observations as recorded in your parent journal. If these reports do not accurately describe your own observations, be sure to question these reports in writing to your child’s special education liaison. This will document your concerns.
  • Realize that every year of your child’s education matters. Time is essential in special education. If there are too many delays getting services, your child may fall behind. Each new year builds on the skills learned the previous year. It is remarkable how quickly a school year can go by and how the academic demands intensify as students advance in the grades.

Being your child’s special education advocate is an additional job for you on top of all the other things you are already doing. But it can be one of the most rewarding jobs you will ever have. Giving your child an appropriate education is an essential foundation for a productive future.

Learn more strategies for success in the Graves’ book, Parents Have the Power to Make Special Education Work: An Insider Guide. You can also discover more resources and check out their blog at their website.

Special Educational Needs and Pastoral Education Autumn 2014

Browse our latest collection of titles in special educational needs and pastoral education. For more information on any of the books inside, simply click the title or cover image to view the full book page.

JKP Authors at National Autism Conference in Indianapolis

Judith Canty Graves and Carson Graves, authors of Parents Have The Power To Make Special Education Work: An Insider Guide, share their experience at the 2014 45th National Autism Conference in Indianapolis, IN, USA (July 23-26, 2014).

Indiana State Capitol building

Indiana State Capitol building

“The National Autism Conference in Indianapolis was an exciting event for us. We were pleased to have our book be among the ones displayed at the Jessica Kingsley Publishers booth in the Exhibit Hall. We want to thank  Stephanie DeMuzio of JKP Sales and Marketing for arranging a book signing for us on July 24. We met many wonderful parents and educators who stopped by to speak with us about special education.

The National Autism Society, located in Bethesda, Maryland, organized this conference and approximately 1,000 people attended from all over the country. Dr. Temple Grandin, keynote speaker, gave a dynamic speech entitled ‘The Autistic Brain.’ She spoke about the challenges she has faced in her life and how she overcame them with the help of her mother. She also discussed the importance of transition planning for young adults with autism and how communities need to help them succeed in the work force in order to be productive adults.

JKP authors Carson Graves, Jennifer Cook O'Toole and Judith Canty Graves

JKP authors Carson Graves, Jennifer Cook O’Toole and Judith Canty Graves

There were many interesting presentations on a wide variety of topics. One of the most impressive was given by fellow JKP author Jennifer Cook O’Toole, the Asperkids series, whose session was titled ‘See-through Eggshells and Chalk on the Trampoline: Building Extraordinary People Through Ordinary Stuff.’ Jennifer is a talented and charismatic speaker, overflowing with ideas for developing the interests, curiosity, and sense of fun in children and teens with Asperger’s Syndrome. She offered wise advice to parents and teachers so that they could better understand how others think, especially children. Her presentation was inspiring!O_Toole_Asperkids-An-In_978-1-84905-902-2_colourjpg-web Meeting her and hearing her talk was a conference highlight for us.

We are pleased that we were able to participate in this exciting conference and to meet interesting people from all over the country.”

For more information on or to purchase a copy of Parents Have the Power to Make Special Education Work: An Insider Guide, please visit our website.

For more infomation on the Asperkids series or to purchase, please visit our website.

 

 

 

What every parent and professional needs to know

The Autism Spectrum, Sexuality and the Law by Tony Attwood, Isabelle Hénault and Nick Dubin.

This ground-breaking book explores issues that can arise surrounding the autism spectrum (ASD), sexuality and the law.

From the book, Larry Dubin

“I know the love and dedication that is required of parents raising a child on the autism spectrum. There are so many issues that are extremely difficult to navigate. I have great admiration for parents who work hard to find and pay for necessary services while helping their children deal with the many social, sensory, speech and language, and other issues that can arise. With my deepest respect for these special and dedicated parents, let me offer this advice in light of our family’s heart-breaking experience.

  • Recognize that your child is a sexual being. Although it may be difficult to deal with your child’s sexual issues, don’t ignore them, and seek professional help if necessary. Current research indicates that a variety of problems can arise with respect to sexual development for those on the autism spectrum.
  • Make clear to your child that certain behaviors could lead to an encounter with the criminal justice system and even to imprisonment. These behaviors include viewing child pornography on the internet, stalking, unwanted touching, having meltdowns in public and indecent exposure. Your child must understand the severe legal consequences that can occur when these types of charges are brought against people on the autism spectrum who may not understand that they were even committing a criminal act. It may be appropriate to place restraints on your child’s computer to ensure only lawful use.
  • Nick’s case was processed under federal law of the United States. Although most countries criminalize possession of child pornography, the elements of the crime, the possible defenses, and the potential prison sentences are not uniformly followed. Parents should become familiar with the laws pertaining to child pornography in the country in which they reside.
  • Be sure your child knows that if ever confronted by the police, with respect to having committed a crime, he or she should be polite and ask for a lawyer to be present without making any further statements. The trusting and naïve nature of people on the autism spectrum, who typically want to please authority, make them easy candidates to be taken advantage of by trained police officers who can question them without the protection of a lawyer. The law allows police officers to make certain false statements in order to get a confession that can and will be used against the person. There is also the danger that false confessions can occur. It is always best to have a lawyer present to represent the interests of a person on the autism spectrum before making any statements to law enforcement personnel.”

Why this Book Matters—

“As you will discover reading this book, we have been through a long and horrific ordeal. Our family has suffered in silence and shame for over three years. Many would wonder why we have actually chosen to publicly expose such an intimate and personal experience. The answer is that we wanted our experience to count for something; to have a larger meaning. Our purpose in writing the book is to bring forth an issue that has been in the shadows for too long.  In the process of preparing Nick’s legal case, we gathered significant information and research that we feel obligated to share with others who could benefit from it.”

Kitty and Larry Dubin

This book is an invaluable addition to the shelves of parents of children with ASD, mental health and legal professionals, teachers, caregivers and other professionals working with individuals on the spectrum. For more information, please visit our website.

JKP Authors at Visions of Community 2014 Conference in Boston

Judith Canty Graves and Carson Graves, authors of Parents Have the Power to Make Special Education Work: An Insider Guide, share their experience at the 2014 Visions of Community conferece in Boston.

The Visions of Community 2014 Conference at the Seaport World Trade Center on the Boston waterfront was a great event! This annual conference, organized by the Federation for Children with Special Needs, provides education, advocacy, and networking opportunities for more than 900 individuals and families of children with special needs and the professionals who serve them. The Federation, based in Massachusetts, provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities.

There were workshops throughout the day on a variety of topics, such as improving the IEP, transition to adult life, special education law, and many others. The exhibition hall featured dozens of organizations, schools, and businesses that service the special needs community.

The organizers sponsored a book signing of our new book, Parents Have the Power to Make Special Education Work, which gave us a chance to discuss special education with everyone who came by our table to chat and have their books signed. It was a pleasure for us to meet all these parents and professionals.

The Federation believes in the power of parents to help other parents as well as placing a great value on parents as they support the health, education, and development of their children at home and in society. We want to thank Richard Robison, Executive Director of the Federation, for inviting us to be part of this conference.

 

Judith Canty Graves
Carson Graves

Parents Can Make Special Education Work—Why We Wrote Our Book

JKP authors Judith Canty Graves and Carson Graves introduce their new book, Parents Have the Power to Make Special Education Work: An Insider Guide, and explain how to make special education work for your family.

“Almost 30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by strengthening the role and responsibility of parents.

—Office of Special Education and Rehabilitative Services,
U.S. Department of Education, 2010

We entered the world of special education like most parents, with concerns about our child and a diagnosis we didn’t understand. Our experience began in preschool and continued through high school graduation, a span of fifteen years. Over these years we met many other parents of children receiving special education services. We listened to their stories and heard many themes emerge that corresponded with our own observations. As a result of this experience, we realized that every single year of a child’s education matters and that parents are the only constant advocates their child will have during these years. It is an enormous responsibility, but it can be an ultimately rewarding one.

One lesson our experience taught us is that the more parents know about special education, the more effective they can be as advocates for their children. Learning how special education works takes persistence because, like an iceberg, most of it exists below the surface of what parents can initially see. We have heard stories of school districts that are reasonable to deal with, but like us, you may encounter problems that are preventing your child from receiving an education appropriate to his or her needs. The keys to overcoming these problems are knowledge and organization. The tools you must use are research and a network of carefully selected professionals and like minded parents whom you have to identify and cultivate.

Parents of children with special needs have two roles. The first, and most obvious role, is understanding and dealing with their child’s unique disability. The second, and more subtle role, is learning to navigate around the icebergs of special education. This second role usually comes as a surprise. Parents who have quite naturally focused solely on their child’s disability are often not prepared for how the special education system works. They assume that school personnel are the professionals who will know, and more importantly will do, what is best for their child. This assumption is all too often misplaced, because special education in many school districts has become an elaborate bureaucratic maze in which budget requirements are more important than doing what is right or even what is legally required. The result is confusion, disappointment, and lost opportunities.

Our book, Parents Have the Power to Make Special Education Work, is both a narrative of our personal experience navigating the special education system and a guide to help other parents translate our experience to fit their own situation. When we entered special education in the early 1990s, there were no online search engines or social networking sites, so it was difficult to find information and meet other parents with similar concerns. We felt isolated and confused. A book like this would have changed our lives. That is why we wrote it, so that parents who are now involved with special education can learn from our experience.

The realization that parents have the power to make special education work came to us while attending a workshop on transition planning. The speaker made the point that at a Team meeting most of the school personnel in the room actually knew very little about special education. Many understood individual pieces, depending on their specialties, but only the parents were in the position to see the whole picture. The workshop speaker encouraged parents to study the special education process, especially the laws, in order to understand their rights and protections and what a school district’s obligations are to a student, because ultimately, it is the parents’ responsibility for making sure that schools comply with the law. As the saying goes, knowledge is power.

Our message is that parents can make special education work if they take the time to understand their child’s disability, their legal rights, and the often hidden agenda of school culture. We know that you, the parents, are the best advocates for your child. You must be proactive and organized, study the state and federal laws, and persevere. Doing all this will give you the information, the confidence, and the power to help your child get an appropriate education that will pay many dividends in the future. This will be the most important and rewarding job you will ever have. We hope our book will guide you and inspire you.

Judith Canty Graves
Carson Graves

Karen Watchman on Intellectual Disability and Dementia

Karen Watchman, Lecturer in Dementia at the Alzheimer Scotland Centre for Policy and Practice, and editor of the new book Intellectual Disability and Dementia, joined us for a short interview. She talks about how she became involved in the field, and gives her advice for those working with and supporting people with intellectual disabilities and dementia.

How did you get involved with this area of study?
I spent many years as Director of Down’s Syndrome Scotland where I worked alongside families and people with Down syndrome of all ages. There was even less research conducted about dementia in people with intellectual disabilities at that time which spurred me on to complete a Masters degree in Dementia followed by a PhD researching the experiences of people with Down syndrome and dementia. So, whilst I have an academic interest in this area I am very much grounded in practice and in ensuring that information is made available in an accessible format.
My Great Aunt had Down syndrome and, unusually for the period in which she grew up, lived at home with family into her adult years. So it came as no surprise when research started showing the link between quality of life and increased life expectancy.

 

People with disabilities are living for longer and as a result we are seeing more people with intellectual disabilities than ever develop dementia as they age. What training is available for carers and professionals to help deal with this increase?Watchman Intellectual Disability and Dementia 9781849054225
Typically in the UK, staff, volunteers and carers supporting people with an intellectual disability do not have training in dementia. Similarly, staff supporting older people with dementia do not have training in intellectual disabilities, despite many younger people (especially with Down syndrome) being diagnosed, and some moved inappropriately to care homes for older people.
This is slowly starting to change but there is still not enough interdisciplinary exchange of learning. Training and courses that I deliver where staff attend from across sectors are very valuable, as participants learn from each other. However, it is not just intellectual disability or dementia services – equally important, especially as dementia progresses, is the input of all allied health and palliative professions and that there is partnership working with all services talking to each other and to carers, and all being consistent in their approach.

 

 

Are they any particular methods or activities which are helpful in explaining a dementia diagnosis to someone with an intellectual disability?
This is an area addressed in the book and is something that doesn’t receive enough attention currently. As a result there is inconsistency in practice. Information about a diagnosis or suspected diagnosis of dementia is not routinely shared with the person who has an intellectual disability, despite UK dementia strategies maintaining that everyone has a right to know of their diagnosis. We need to think more about how this can be done with people who have an intellectual disability and embrace non-verbal communication methods too.

 

 

What should staff or carers be aware of in order to be able to support people with an intellectual disability and dementia?
Someone who already works alongside people with an intellectual disability is likely to have been trained to support people to maximise their independence, to work towards independent living or community involvement to the best of their ability. Their work will be person centred and will be focused on the needs of each individual. There is an element or re-learning required by staff when the person with an intellectual disability has a diagnosis of dementia. The work should still be person centred and based around the individual but as capacity and cognitive ability change there is an associated need to change the way that staff, volunteers, family and friends provide support.
Carers also need information about interventions – this may or may not include medication. Social interventions such as meaningful activities and life story work are also essential. Awareness of contraindications with medication is important especially as many people with intellectual disabilities are over-prescribed anti-psychotic medication.
Specific knowledge of dementia that needs to be shared with staff, volunteers, family and friends include: what dementia is, different types of dementia and how each affects the person, early signs (this can differ from early signs in older people without an intellectual disability), environmental adaptation to ensure that accommodation is appropriate to the persons changing needs, communication changes and physical changes that will occur as the condition progresses. I am often asked for help with what is perceived as a behavioural issue, but with appropriate information or training there is a realisation that if we get the environment, communicating and our approach right – this is what has caused the changes in behaviour.  We need to work out the triggers and acknowledge our role in this – often a change in behaviour is caused by us not understanding the person and not providing appropriate support.

Intellectual Disability and Dementia is due to be published May 2014. 
Karen Watchman is the editor of the book as well as an experienced expert in working with intellectual disabilities. 

 

Teaser Tuesday-Requirements for Being a “Parent” as defined by the Individuals with Disabilities Education Improvement Act (IDEIA)

The Comprehensive Guide to Special Education Law by George A. Giuliani is a detailed yet accessible introduction to federal law as it applies to the rights of children with special needs. Written in a user-friendly question and answer format, the book covers all of the key areas of special education law including parental rights of participation, the legal right to Free Appropriate Public Education (FAPE) and related services, and the complex issues of discipline and dispute resolutions.

Who is a “parent” as defined under the Individuals with Disabilities Education Improvement Act (IDEIA)?

Perhaps the most important element afforded under IDEIA is the right to parental participation at almost all stages of the special education process. To increase the odds that each child has a parent in the special education process, IDEIA does define the term “parent” but does so in a broad way. Under IDEIA, a “parent” means:

  1. A biological (natural) or adoptive parent of a child
  2. A foster parent, unless State law, regulations, or contractual obligations with a State or local entity prohibit a foster parent from acting as a parent
  3. A guardian generally authorized to act as the child’s parent, or authorized to make educational decisions for the child (but not the State if the child is a ward of the State)
  4. An individual acting in the place of a biological or adoptive parent (including a grandparent, stepparent, or other relative) with whom the child lives, or an individual who is legally responsible for the child’s welfare, or
  5. A surrogate parent who has been appointed in accordance with 34 C.F.R. 300.519.

Download the Requirements for Being a “Parent” extract here.

Dr. George Giuliani works at Hofstra University, Long Island, where he is an Associate Professor at the School of Education, Health and Human Services and former Director of the graduate school program in Special Education. He is also an Adjunct Professor of Law at Hofstra University’s School of Law where he teaches the course, Special Education Law. Dr. Giuliani is the Executive Director of The National Association of Special Education Teachers, Executive Director of the American Academy of Special Education Professors, and President of the National Association of Parents with Children in Special Education. He has written many books on special education and he is a consultant for school districts and early childhood agencies. He resides in Melville, New York.

Teaser Tuesday-‘Oral Motor Fun’ Activity

Speak, Move, Play and Learn with Children on the Autism Spectrum: Activities to Boost Communication Skills, Sensory Integration and Coordination Using Simple Ideas from Speech and Language Pathology and Occupational Therapy by Lois Jean Brady, America X Gonzalez, Maciej Zawadzki and Corinda Presley is a practical resource brimming with ideas and guidance for using simple ideas from speech and language pathology and occupational therapy to boost communication, sensory integration, and coordination skills in children on the autism spectrum. Suitable for use in the classroom, at home, and in community settings, it is packed with easy-to-follow, goal-oriented activities and lesson plans.

The goal of each lesson is to obtain skill sets that will allow children to be active participants in their day, through fun and challenging activities. The activities promote development by structuring opportunities for engagement while facilitating language and skilled motor production, and are presented with suggested variations that can be used to work with a range of low-level functioning individuals and higher-level individuals functioning with greater independence.

Download the ‘Oral Motor Fun’ activity here.

This activity will help students to organize oral motor sensation and coordination, and to strengthen blowing, chewing, sucking,and diadochinetic skills. The ‘Oral Motor Fun’ activity also supports labeling, verb+ing, fine motor, and group pragmatics.

 

Which of Your Child’s Services are You Willing to Give Up?

Reprinted permission granted from The Autism Notebook Magazine

JKP author Vaughn Lauer, PhD shares expert insight on dealing with your IEP and securing services for your child.

WHICH OF YOUR CHILD’S SERVICES ARE YOU WILLING TO GIVE UP?

Silly question? Perhaps.  Reflect on your child’s Individualized Education Program (IEP) along with the services that are in that IEP. Now, ask yourself which of those you would be willing to give up. Seriously, what kind of a question is that, right? You’re not willing to give up anything.  Okay, which would you give up for something else?  Farfetched questions? Not so much if you enter an IEP meeting thinking IEPs should be negotiated. For example, if you have ever thought of something similar to “If I don’t get adapted PE, I will go for more hours of speech therapy.” you are thinking in terms of negotiating away some of your child’s services. Why would you be willing to do that to your child? Look at how an IEP meeting might proceed.

Assuming Best Case Scenarios

Let’s assume that the IEP team—including you, of course—has agreed to your child’s present levels of academic and functional performance based on a review of all available and current information. The team has also identified and agreed that each of your child’s needs are to be addressed in the IEP. So where is the twist? It’s coming.

Assume that the goals are then written with near perfection.  That is, the team identified those behaviors (e.g., social or academic, motoric, etc.) to be affected through implementation of the IEP.  The goals included clearly stated conditions under which the behaviors are to be observed (e.g., when given a fifth grade text of 225 words, within 13 minutes, etc.). Lastly, the goals were stated in easy to understand measurable terms (e.g., with no more than 2 word errors, 70% of requests, with 80% accuracy, etc.). So what’s the big deal? Almost there.

The next steps are to determine the services to be provided, the time and frequency of each, and where they are to be delivered.  Thinking about your child’s present (and past) needs and rate of progress, you conclude your child requires more speech and language services than in the past. Staff, however, feel it is not necessary. You insist that services be increased, but staff say it isn’t possible to do.  You, nevertheless, counter that there has been limited progress made over the course of the year in the area of language development. A review of the data support your position and staff offers additional time, but, state a need to reduce the time of adapted PE.  You think, “I got the extra SLP time!” and accept the counter offer.

Realization Sets In

An hour after the meeting ends you realize—yes, here it is—you gave away a service previously determined to be necessary to meet one of your child’s goals.  You had negotiated away one of your child’s needs.  In case you’re thinking this does not happen, it does.  But, this can be circumvented, by throwing out the idea that IEP meetings are built on the premise that you and the school are meeting to negotiate the development of the IEP and services your child requires.

What Should Be Done?

What should be implemented is called the structured collaborative IEP process. This process poses six key questions to the team that will facilitate collaboration through group problem solving and lead to the development of the IEP>

The questions are:

  • What do we know? Where are we?
  • Where do we want to go? What is it we want to accomplish?
  • How will we get there? What do we need to get there?
  • How will we know that we are getting there?
  • How do we know when we have arrived?
  • How do we keep what we have?

By following the structure put in place by the IEP document itself, a plan can be devised that includes all that a child’s needs require. For example, the Present Levels of Achievement and Functional Performance (PLAAFP) should be written in such a way that the challenges and strengths of the child are clearly documented. Goals are then developed in line with those documented needs and subsequently, services given that will allow those goals to become a reality. Accommodations and supplementary aids no longer become such a challenge to obtain when the needs that support them are documented in the PLAAFP.

The practice of negotiating is unnecessary, as the evidence from which to base the decision (i.e., what services are to be provided, answering the question: How will we get there?) has already been established and agreed upon when the full IEP team identified your child’s needs (Answering the question What do we know?) and wrote goals (Answering the question: Where do we want to go?) addressing those needs.

What happens if the school insists on reducing services as a part of a “bargain?”

If you have an IEP that truly describes your child’s needs, and goals written to target those needs, you have become an advocate’s dream. Why? Because you have the documentation to support the services required, based on available data and measurable goals (How will we know we are getting there? and How do we know even we have arrived?) that require certain services in order to be fully implemented (How do we keep what we have?). The decision made by any third party reviewer would be to hold the school responsible for the provision of all services needed by your child. Exactly as it should be.

Reprint from The Autism Notebook Magazine, “Back to School” Aug/Sept 2013 issue. Link: http://virtualpublications.soloprinting.com/publication/?i=172140, www.AutismNotebook.com

Vaughn Lauer, PhD, is an educator with years of experience in the field of special education. He is the author of the forthcoming book,  When the School Says No…How to Get the Yes!: Securing Special Education Services for Your Child published by Jessica Kingsley Publishers.