Advocating for Your Child with Special Needs in a Way That Promotes Self-Advocacy

Advocating for Your Child with Special Needs in a Way That Promotes Self-Advocacy As the mom of a now-adult special-needs kid, I’ve been thinking a lot about what we did that helped, what I wish we hadn’t wasted time and money on (there will always be a lot in that category, so don’t beat yourself up!), and what I think was most important. That last category, in particular, has changed since I was actually “in the trenches.” From this vantage point, I now realize that one of the most important things, a quality without which nothing moves forward, is emotional resilience. By that, I mean the ability to take in struggles and failures, wrestle with them, get back up, and move on. I mean the incredible strength of spirit it takes to be acutely, constantly aware your own inadequacies, or what the world sees as such, and still believe that you are worthy and capable of reaching for your dreams. I recently asked my son CJ what he thought had helped the most with this, and his answers surprised me. In my last blog post, I discussed the importance of getting into your child’s world as much as possible. Today, I’d like to talk about advocacy. Parents of kids with special needs know that advocating is forever part of the territory. You’re the hub that holds your child’s world together—explaining his needs to teachers, family members, other caregivers. It’s ongoing, it’s exhausting, and it sometimes makes you want to scream, “Can’t you people deal with a little variation?!” And eventually, you probably need to step back and let your child fight his own battles. When and how to do that varies, but I believe that is one of the most important steps toward empowering your child to navigate the world. We never actually sat down with our son and said, “This is how you talk to people about your issues; this is how you handle these kinds of situations.” But we did discuss his issues with him in a very matter-of-fact, “this is just how your brain works” kind of way. He surprised us more than once by distilling those conversations beautifully. I once spent an hour overexplaining my son’s issues to a homeschool group facilitator, only to have CJ later explain himself more effectively and in a fraction of the time. I would get caught up in the neurological details, which—according to my son—made people want to run screaming from the room. (Note to other brain research geeks: Almost no one is as interested in that as you are.) Despite my tendency to overdo things, however, he did learn something from my approach. I didn’t realize how much he had overheard me advocating for him, and the tone I set (if not the content) seemed to help him find his voice. “You were always just clear and firm—not apologetic, not hostile, not defensive. And when you explained why I needed this or that, you made it sound like ‘Look, it’s not a big deal, but this just is how he works and this is just what he needs.’ You showed me the right note to hit when I talked to teachers myself.” Whew! I now believe that advocating for a child is more important, on more levels, than I realized at the time. It isn’t just a matter of telling a teacher what techniques will or won’t work. It’s a message about who your child is, how he needs to be treated, and what’s going on for him as a human being, not just a little learning machine. How you see your child and his challenges translates powerfully to others. Ultimately, you are trying to create this message in his world: You are seen, you are understood, you are accepted. Therefore: You are safe. All children (indeed, all humans) need this, but I would argue that children with special needs require it more because they experience it so rarely. How we present them, and how we teach them to present themselves, is crucial to their self-identity. Friendship Circle - Written on June 6, 2017 by: Marijke Jones,

Help Your Child Imrpove Self-Control and Practice Self-Modulation

To modulate, according to Dictionary.com, is “to regulate or adjust, soften, tone down, to alter or adapt.” Applying that, self-modulation means being self-aware enough to regulate/adjust/alter/adapt one’s behavior choices to better fit a situation. This is a valuable lifelong skill—and one that many children with disabilities struggle with. Self-modulation feeds independence. To encourage it, let your child practice decision-making.  I encourage you to offer this opportunity to your child in spite of possible risks and fears. Your child gets to (and needs to) practice responsibility using intrinsic motivation to feel empowered. The following are some ways I’ve worked on this with my son. You may be able to use these same ideas, or adapt them to the particular situations and interests of your child. Using Time Wisely (Redirecting from Stalling) On school mornings, we often struggle with getting out of the house on time. I want my son to take his vitamins and eat his breakfast. He wants to win the power struggle, and therefore he dawdles. My nagging doesn’t help him move faster. Perhaps you have this dynamic at your house. So I give him a choice: “Want to eat here at the table or in the car?” He knows from experience that as soon as he clicks his seat belt, he will have a small towel and a bowl of healthy food on his lap as we drive. He has to eat it all before he gets anything else to eat, and I don’t let him talk me out of it. Happily, he hates that bowl on his lap in the car. But having a choice makes him feel empowered. He chooses to self-regulate and almost always redirects himself to take a bite at the table. As you fade your prompts, ask “Are you hungry?” or say, “If you are done eating, please put your bowl in the fridge.” These redirect questions can also work for things like brushing teeth or tying shoes. Ask, “Do you want to brush your teeth in the bathroom or in the car?” or “Do you want to tie your shoes here or in the car?” If you have a preference, phrase the question to bias your child toward what you want. Showing Responsibility by Appropriate Behavior In restaurants, let your child order her own food and do her own negotiating. As an example, I take a carful of my son’s neurotypical friends to Chick-fil-a every Friday after school. Each child does his own ordering, and I let my son pay the tab with his youth debit card. Paying for things he cares about is meaningful to him. When we go to restaurants together, another way we work on responsibility is that I let him choose two books to take in. We then do reading aloud until the food arrives. My son prefers that I read and he listens, so we work out a compromise. I read one page, and he reads the next one. It has created some very nice family moments. Checking in and checking out at therapy or a doctor’s office is now my son’s job. He gets practice waiting in line, conversing face-to-face, and using an appropriate tone of voice. It is also his job to carry the school “excuse” note into the school office. Use backward chaining, with practice, and soon your child will have the entire process mastered. That involves letting your child do the final step in an activity, and then the one before that, and the one before that, until he is doing the whole thing himself. Choosing Appropriate Language Our children know how to push our buttons. My son can get a mischievous look in his eyes and start talking nonsense and using bathroom words. This often occurs when we are reading. To redirect him, I tell him at that time it is his turn to read. When he resists, I give him a choice of “read or listen.” If I can remove my side of the power struggle, even for a moment, that works as an effective reset. If you find a need to withdraw yourself from a power struggle as a reset or redirect when you’re in the public eye, I have found that something as simple as dropping a napkin on the floor and reaching down to get it works. I have also have picked up a menu and asked him what he wants to eat. A break in the action gives kids the time they need to transition out of unproductive behavior. Personal Space (Hands to Yourself) When you visit a museum or other places requiring “hands off,” let your child choose two books from home to carry, one for each hand. Keep a box of books in the car, as I do, so they are always available. Give your child a choice of carrying two books or keep hands in pockets. It gives me a sense of peace as a parent, as carrying books is what a regular kid would do. These and other everyday situations give your child opportunities to practice modulation in the real world. If you struggle with what an appropriate choice looks like, my litmus test is “What would a typical child do?” Article from Friendship Circle. Written by Gayle Fissher

5 Special Education Terms Parents Need to Know

FAPE … LRE … IDEA … I confess: my children’s IEPs read like they were written in a foreign language. It took me a while to figure out what I was even reading, let along what it all meant. But special education law and your children’s documents should always be understandable. To that end, let me share a list of five must-know acronyms and terms (or groups of terms) that every parent of a child with learning differences or other special needs should know. Knowing how to speak the language of special education helps you as a parent make effective requests. It also lets the school team know that you are an educated parent advocate–which is just what your child needs. 1. IDEA = Individuals with Disabilities Education Act IDEA (with all its subsequent modifications) is the federal law that gives children with disabilities the same right to an appropriate education as children without special needs. Parents should know that IDEA is not just about test scores. IDEA has three stated purposes: • readying students to pursue their education after high school • preparing students for employment • helping students learn to live independently, to the extent possible. Federal law lists thirteen classifications under which children can qualify for special education. While the program known as Early Intervention provides services to children ages 0-three, public school districts are charged with providing special education and related services to students from age three through 21 (in some cases) whose disabilities necessitate it in order to make progress. Another key provision of IDEA is that parents are vital participants in decision-making for their children. This means that parents have a right not only to share information and voice concerns, but also to decide as part of a team along with teachers and/or other professionals what programs and services are appropriate for the child. 2. FAPE = Free Appropriate Public Education IDEA states that children with special needs are entitled to a “free, appropriate public education”. Free means at no cost to the parent—including the cost of transportation if needed to take a child to a school other than the child’s home school in order to place the child in an appropriate program. Appropriate is a critical term that parents need to understand. A program is considered “appropriate” for a child when the child in that program makes meaningful gains. “Meaningful,” in turn, means that the child is benefiting from the program, not regressing or stagnating. An “appropriate” program is not necessarily the best program. Also, progress is determined not by report cards but by measuring the child’s achievement versus his or her potential using standardized tests. 3. IEP = Individualized Education Program An IEP is the written document that the school, in conjunction with a student’s parents, creates in order to describe the special education program for the child. Parents should know that the IEP grows out of the child’s needs. If the school does not have in place the program or services that the team believes the child needs, IDEA charges the IEP team with finding that program or creating it. The IEP should set goals for the child for one year, but the team should revise it throughout the year, as needed, to ensure that the child’s program is appropriate. If parents are concerned about their child’s progress, it is completely appropriate for them to request a meeting of the IEP team to address those concerns. IDEA gives parents the right to do so. 4. LRE = Least Restrictive Environment Educating children in the “least restrictive environment” is part of IDEA’s mandate. What this means is that schools must educate students, to the extent possible, close to home and with their non-disabled peers. Parents need to know that LRE is not the same location for every child. The IEP team needs to consider the child’s unique profile. An environment cannot be the LRE for a child if the child fails to make meaningful progress in that environment. Special education attorneys often speak of finding the so-called “sweet spot”—that placement in which students are in an environment that is not unnecessarily restrictive, but also is tailored enough so that the student receives the supports that he or she needs to make meaningful progress. 5. OTs, PTs, SLPs = Occupational Therapists, Physical Therapists, Speech-Language Pathologists This set of acronyms represents three of the most common related services that children with special needs have as part of their IEPs, and the folks who provide them. The school provides these so-called related services to children, most often during the child’s school day. Parents should know that schools are required to assess students in all areas of suspected disability. Parents may ask for their child to evaluated for OT, PT, and speech therapy, but also in other areas if they have concerns. Physical therapists will help your child with gross motor skills, like walking, running, and jumping. Occupational therapists will help with fine motor skills, like writing,, coloring, and cutting, and may also address sensory-integration issues. Speech-language pathologists help children with producing the sounds of speech, using language to express themselves, and processing the language they hear. Schools have provided psychiatric evaluations, functional behavioral assessments, and assistive technology evaluations, to name a few. Parents can also bring private evaluations to the school districts. IDEA requires school IEP teams to consider this information. Parents should take heart in the fact that education is more than academics, and special education is not just for students with poor grades or who are failing in school. Education is a broad concept that encompasses emotional, social, and behavioral challenges that may interfere with a students ability to function in school. Students’ IEP programs have included supports for such emotional, behavioral, social, and other concerns. In addition to OTs, PTs, and SLPs, parents should know that behaviorists and school psychologists are two additional types of professionals who can play an important role in helping children whose disabilities affect their ability to function in school. … and lots more There are, of course, many many other acronyms and technical terms that may be thrown around by professionals in IEP meetings and the reams of paperwork that go along with them. Yet to work effectively to meet each child’s needs, all members of the team need to be able to speak the same language. Sp don’t hesitate to ask for clarification of a term or any other procedure, program or policy. Federal law makes you, the parent, a vital part of your child’s IEP team. Find a source of strength in you to be that confident mom or dad at the IEP table, unafraid to ask any question that helps you get the information you need. Because no one cares like you. You are your child’s best advocate, and your child needs you. For longer lists of special education terms, visit these online resources: • “Glossary of Special Education and Legal Terms” from Wrightslaw • “Disability Terms and Definitions” from Council for Exceptional Children • “Terms in Special Education” from Do2Learm • “IEP Terms to Know” from Understood.org • “Glossary” from The Iris Center Article from Friendship Circle and written by Greer Gurland - a Harvard Law School graduate and a mother of children with special needs, is the author of the 2016 multiple award winning How To Advocate Successfully for Your Child: What Every Parent Should Know About Special Education Law available in English and Spanish

The Supreme Court Case Every Parent of a Child with a Disability Should Be Following

Legal experts predict that the US Supreme Court will take a major step towards advancing the legal rights of children who have special needs when the justices decide the case of Endrew F. v Douglas. The Court heard oral arguments last week in the case and is expected to provide a decision by the summer. The decision, in this case, could impact several million children and define what a free appropriate public education entitles them to. For the second time since 1975, when Congress passed the Individuals with Disabilities Education Act (IDEA), the Supreme Court is expected to define and further clarify the legal mandate of the IDEA. The IDEA states that school districts that receive public funding are required to provide each student who has a disability with a free appropriate public education (FAPE). The only previous Supreme Court case to define the term FAPE was Board of Education v Rowley 458 U.S.176 (1982). An Earlier Ruling on FAPE From the perspective of some parents and special education attorneys and advocates, the Rowley holding did not provide adequate legal protections. In addition, there has been disagreement between lower court federal judges concerning the application of the Rowley decision; therefore, the meaning of the term FAPE varies according to location. In Board of Education v Rowley, the Supreme Court stated that the purpose of the IDEA is to provide “access to a free public education” and that there are two definitions of FAPE. First, a child receives FAPE when the educational instruction is “specially designed to meet [his] unique needs … supported by such services as are necessary to permit the child ‘to benefit’ from the instruction.” The second definition of FAPE is an “individualized educational program … reasonably calculated to enable the child to receive educational benefits.” The determination of whether or not FAPE is being provided is relative to the expectations for each child, based on the child’s developmental needs. The justices wrote in Rowley that “the benefits obtainable by children at one end of the spectrum will differ dramatically from those obtainable by children at the other end… We do not attempt today to establish any one test for determining the adequacy of educational benefits conferred upon all children…” The case limits the obligations of school districts in their education of students who have special needs. The opinion states explicitly that states are not required to “maximize the potential of handicapped children” or to “guarantee any particular level of education.” Setting a Standard for Special Education Circuit Courts have interpreted the decision in Rowley with varying results; there is no uniform standard in the meaning of FAPE. The case of Endrew F. will provide an important opportunity for parents and advocates to gain further insight into the Court’s understanding of the IDEA. The case of Endrew F. v Douglas County School District involves a seventeen-year-old male, Endrew, who has autism. When he was in fifth grade, Endrew’s parents felt that he was not making adequate progress towards his social-emotional goals. Endrew, known as ‘Drew,’ was banging his head on the floor, removing his clothes, and bolting from school. Drew’s parents withdrew him from public school and placed him in a school that specialized in treating children who had autism. He started to make progress immediately, and his parents sued the school district for reimbursement of the $70,000 annual tuition. The federal judges ruled that because the school was providing “some educational benefit,” the parents were not entitled to reimbursement. Defining “Free Appropriate Public Education” The case before the Supreme Court is based on the meaning of FAPE. At the oral arguments, three lawyers presented varying interpretations. On the Scotus blog, reporter Amy Howe describes the positions, gives the responses of the justices, and provides commentary of the likely outcome. According to this report, the justices seemed to reject the proposal advanced by the school district’s lawyer, namely that even with minimal progress, a “non-trivial benefit” at school satisfies FAPE. The lawyer representing the family modified his argument at the oral argument in order to address the justices’ concerns about cost and the need for a national standard. His new proposal had two alternatives, according to the Scotus blog post: “A student’s IEP should generally ‘be tailored to achieve a general educational curriculum at grade level’; if that is not possible, the IEP should use alternative benchmarks that are ‘the highest possible achievable by the student.’” The lawyer for the Justice Department stated that the IDEA required “significant educational progress in light of the child’s circumstances.” The Scotus blog report states that this is the standard most likely to be assumed by the Court because it follows legal precedent most closely. The Scotus post also states that the federal government’s suggestion “comes from the Department of Education, which – as Breyer noted – has expertise in issues related to education and the IDEA.” Parents should pay attention to the decision in this vital case. It is expected to provide a long-awaited definition to the crucial phrase “free appropriate public education.” By: Rachael Wurtman Friendship Circle