Special education and the legal issues surrounding it are very complex topics. Parents need to know their rights and responsibilities, and what their child is entitled to. For parents in the San Francisco Bay Area, the Leigh Law Group is presenting a workshop for parents and professionals on Special Education: Rights to Related Services in the Public Schools. The training event is November 14th, 2009, in San Francisco, and it’s only $10.00.
I’ll state right up front that I’m not familiar with this group, and I don’t know the presenters, but the topic is so crucial, I’m guessing this could be a valuable morning. I think they run these regularly, so you might want to get on the mailing list. If you do attend, please send me a note and let me know how the presentation was. Mother in the Middle is a fascinating book, a moving and personal memoir of a woman’s experience with raising small children while at the same time caring for a parent with Alzheimer’s. But the author is also a neurobiologist, and she beautifully interweaves her own technical perspective into the work. It’s this unique juxtaposition that makes this memoir stand out from others. Usually, I review books about careers, business, social skills or autism and Asperger’s on this blog. And this is not a book about any of those topics. But I think it’s appropriate for this blog anyway. Human development, mental illness, emotions, thoughts, behavior and personality are all controlled by our nervous systems, but we’re still at the early stages of understanding those systems. For those of us who aren’t neuroscientists, making the connection between the brain structures and human experiences can be especially difficult. This book makes those connections. Life events and biology come together clearly. The fact that the author is also a teacher makes her explanations that much clearer. As an example, at one point in the book the author narrates an event where her mother completely forgets about an important loan she made. The memoir moves smoothly from discussing the event to describing what’s actually taking place in her mother’s changing brain. The technical explanations are beautifully balanced with the honest and insightful experiences the author and her mother are going through. The growth and development of her children's abilities contrast dramatically with her mother's declines. I love books that combine the personal with science. Maybe that’s because I’m an engineer as well as a therapist and coach. But, I think examples help all of us understand, and true life examples can really make a technical discussion come to life. That’s what this book does so well. Playing outside is one of the core experiences we all remember from childhood, but all too often it doesn’t happen for kids with special needs like Asperger’s, autism and ADHD. And that’s really a shame, because outdoor play is often the easiest way for all sorts of diverse personalities, abilities, and ages to interact.
School politics can get very specific, with each child interacting with only the chosen few in a social clique. Different ages, groups and genders rarely mix at school. But kids aren’t quite so particular when it comes to neighborhood play. A lot of that just comes from opportunity. In neighborhood play, there just aren’t so many kids to choose from. It’s not uncommon for neighbors who’d never talk at school to spend days together at home, having a great time. There’s nothing wrong with this. Schools can be about cliques, but home can be much more open. Not every neighborhood friend has to turn into a best friend at school. The great thing about outdoor play is that it’s unstructured. There aren’t rules like there might be in team sports, there aren’t even goals or objectives. Kids can just run around, invent new games and be creative. And that’s where kids with ADHD and ASDs can really shine. Their creativity and energy may make these kids the highly sought after playmates. Why don’t you give it a try? Make sure your children are spending some time in the front yard where the neighbors can find them. Pay attention to where other kids live. Then, maybe your child can take the plunge. Parents have to step back here, but it’s easy to coach your child. Just ring the doorbell, ask for the child and say something really basic like, “Hi, I’m Matthew. Do you want to come out and play?” That’s it. That may be all it take for your child to interact with peers, spend time outside, and probably have a great time. Raising a child with special needs like an Autism Spectrum Disorder (ASD), Asperger’s, or Attention Deficit (ADHD or ADD) is a challenge, and too often parents don’t notice all the progress they’re making. Instead the situation seems overwhelming and hopeless, and it’s as if things will never get easier for your family. The reality is that these kids do make progress. But, progress may come slowly, or in a “two steps forward one step back” pattern that may obscure all the growth. That’s where behavior charts can be so helpful.
Behavior charts can be a great tool for keeping track of how your child is doing. They can provide feedback to teachers, doctors or therapists, and most importantly, they’ll tell you, the parents, how things are going. Free behavior charts can be found all over the internet and you can download a basic, easy monthly behavior chart on my website as well. Just find something to suit your needs, one that won’t be too much effort to fill out, but will provide you with the information you need. If your child is on medication, charting behavior is crucial. Psychiatrists and pediatricians are terribly overloaded and appointments can be brief and infrequent. Track your child’s behavior, sleep, and school results, and make note of any special circumstances. Did your child start a new medication, forget a dose, have a substitute at school? Write that down. Bring the chart to the doctor’s office so they can see exactly what’s going on. Prescribing medication is very difficult and you want your doctor to have all the information possible. Sometimes it can be very helpful for your child to have a visual measure of his or her own progress. If the chart is being used as a motivator or to track rewards, it’s best to find something bright and colorful. There are many attractive charts online designed specifically for different ages. Teenagers are not too old to benefit from a behavior chart! They provide a visual, concrete image that can be much more meaningful than a generalized comment. Just avoid childish graphics, and consider displaying it in a more private location. After the chart is filled out, please don’t throw it out! File it away in a drawer and look back at it once in a while. Years from now you may be amazed to see what issues you were dealing with and how far your child has come. (For a few examples of successful individuals with diagnoses of autism, Asperger's or ADHD, check out these earlier blogs. Ari Ne’eman is an autism advocate. John Elder Robison, Blake E. S. Taylor, and Zosia Zaks are all successful authors with various diagnoses. Read the comments from jypsy on her son and his running blog, as well as links to her You Tube videos.) Here in the East Bay, most schools are in the second week of the new school year. It’s a stressful time, because everyone is dealing with a lot of change. This time of year can be especially difficult for kids with ASD’s like Asperger's or autism, or attention issues like ADHD or ADD. Routines are not yet established, teacher expectations are uncertain, and social issues are constantly changing. With all this going on, it really pays off to check in closely with your kids.
I worked with kids for years, both as a therapist and in the schools, and from this I know that the most proactive parents get the best results. It’s a hectic time of year, but a little extra effort now will pay off. In my experience, teachers and principals really are trying. But, budgets are tight, there may be misunderstandings, there are too many kids and not enough time. No one is as motivated to help your child as you are. Here are a few early check-in points. 1. Does Your Child Get the New Systems? Homework, bringing home books, using the library, getting extra help, lunchtime routines. Every year the rules change a bit. It can be very confusing for any child. But, now is the time to make things clear. Maybe you can run through your child’s day and make sure there’s no confusion. 2. Are Friendships Starting Up? I can’t stress enough that the beginning of the school year is when most kids shift friendships. It happens gradually, but the groundwork is being laid now. Help your child maneuver through these confusing changes. Just talking about it can help make things clear. Teachers can be a great resource when there are problems. 3. Monitor the Situation Are there potential issues showing up early? Maybe you won’t want to do anything, but just pay attention to it. Or, if the problem is severe, catching it early can allow you to make a quick fix, like a classroom transfer that won’t be possible in a few months. Of course, you shouldn’t be combative with the school, after all they are responsible for your child for hours every day. But that doesn’t mean you can’t track things carefully. Jot down private notes if you’re uneasy about a school situation. If things get worse, you’ve got some data, and if the problem goes away, no harm done. Too often, I see parents frustrated by months of difficulties, and only then do they start to document the details. An entire school year can be lost when that happens. Pretty soon, things will settle into a routine and it's going to be a lot easier! Adults with ADHD really struggle with managing the daily aspects of their lives. Those with Asperger’s and ASDs often have issues with ADHD or executive functioning as well. For all these individuals, the tips and strategies in ADD-Friendly Ways To Organize Your Life, by Judith Kolberg and Kathleen Nadeau, Ph.D. (Taylor & Francis Group, 2002) may be useful. The book attempts to provide strategies, accompanied by what the authors term support and structures, to manage various organizational issues every adult faces. The premise of this book is that those with ADHD may not do well with the intense, detailed organizing ideas presented in many other organizing books, but that simple structures, accompanied by support from friends, family and professionals, can result in effective changes. The book is broken down into chapters for those who are troubled with different aspects of disorganization, such as overcommitment, waiting until the last minute, dealing with clutter, and managing bills and money. For each area, a simple plan of organization is offered, although it’s probably not a lot different than that of many other systems. The ADHD twist of this book is then in adding support in the form of assistance from friends, family or professionals. Although this could be useful, it may be unrealistic to expect a friend to sit by supportively watching as an adult sorts through monthly paperwork. I wish the book had focused more on helping adults grow and shift from using the support of others to developing independent ways of functioning in the long term. Still, in spite of these shortcomings, the book does offer many useful tips. I especially like the limit setting tips, such as for every item or activity you add to your life, first you need to subtract one item or activity that you already have. In the chapter on prioritizing, the advice calls for limiting the to do list to 5 items only, and each should be done today. The authors also are quite clever in utilizing the creative strengths of those with ADHD. Their “muttering” filing system uses file labels such as “Why can’t I find this when I need it?” and “I have got to call these people!” They suggest cleaning the garage to organize it in the same way a hardware store would be organized. Like most organizing systems, adults with ADHD will not find all the solutions in one place, but they may find a number of useful tips. Disorganization is one of the hallmarks of Attention Deficit/Hyperactivity Disorder and it’s often a key feature of autism, Asperger’s and Autistic Spectrum Disorders (ASDs). But, the good news is that disorganization is one of those issues that can be managed with relative ease. The goal isn’t to turn your child into a filing, cleaning, organizing wunderkind, but instead to teach some systems to help your student develop a level of organization that allows for school success. A great resource for this is The Organized Student: Teaching Children the Skills for Success in School and Beyond, by Donna Goldberg with Jennifer Zwiebel. (Simon and Schuster, 2005) Although individuals with ASDs may be terribly disorganized, this weakness is frequently offset by strengths in analyzing and what Simon Baron-Cohen terms “systemizing”. The Organized Studentis set up in a way that takes advantage of your child’s innate abilities and problem solving skills to develop customized, personal systems for organizing at home and at school. Goldberg runs through the specifics of organizing lockers, backpacks, desktops and all those papers that come home. The strength of the book is the immense detail Goldberg goes into, while at the same time not setting up “one size fits all” solutions. She respects her students needs to have a system that works with their own abilities and that feels appropriate to each individual. Many of the students I’ve worked with intend to start each new school year off right, organized and structured. But without a strong yet flexible system, the best intentions don’t work, and the students are lost in a sea of papers by October. If this describes your child, it might make sense to pick up this book now. Pay attention to each new teacher’s organizing requirements, adapt the book’s suggestions to fit your child’s own needs, and start the new school year off right. Back to school is a stressful time, but it can be especially difficult for kids with ASDs and ADHD. But, now is the time to take a few steps to ensure more success this school year. The beginning of the year is the time to get organized, and to make new friends. Keep these tips in mind before going back to school.
1) The Unknown Can be Scary Try to familiarize anxious kids with the school environment before the first day. Take a tour, figure out where the classrooms are, stop in to the office or walk by the homeroom. Some schools might even allow you to meet the teacher. Other schools publish a class list or have an orientation picnic. 2) Take Your Kids to School On the First Day Most school are packed with parents dropping kids off on the first day. This is your perfect opportunity to meet other parents. Remember, lots of parents are uncomfortable with playdates if they don’t know the other parents. You want to start meeting moms and dads now. Also, the teachers are looking for volunteers right now. Here’s a perfect opportunity for you to get involved at school and know the parents and teachers better. 3) PTA Events Many schools have a PTA coffee on the first morning, another chance to get to know people. (Remember, the principal or office staff will probably be there. You want them to know you’re willing to help out and give back.) 4) Be Sure To Go To Back To School Night Back to School Night is your first opportunity to find out what the teachers expect, how their classroom are organized and to show that you’re a concerned parent. You may not have a chance to hear from your child’s teacher until after the first report cards, so this is an important opportunity. 5) Discuss Lunchtime Plans with your Child Lunchtime and the daunting cafeteria full of kids at long tables can be the scariest part of the day. I always suggest kids try to walk into the cafeteria with a friendly classmate if possible. Don’t dawdle or rush there! You child needs to be a part of the crowd now. Some kids bring a small lunch as well as some money so they can either go directly to the table or get in the cafeteria line, depending what their friends are doing. 6) Figure Out How to Communicate with the School Every school is different. Some have a computerized communication system, others want everything on voice mail or through emails. Set up the system now, so it’s ready when you need it. 7) Plan for PE Getting into PE clothes at school can be a stressful experience for shy kids. Find out the requirements at your child’s school and come up with a plan to make your child as comfortable as possible. The teachers may have some tips here, but be discrete. Don’t embarrass your child by discussing this publicly. 8) Back to School Clothes Clothing makes a statement, and every school has it’s own style. Many kids don’t care what they wear, others want to be dramatic or different. That’s fine, unless your kids have struggled socially. If your child wants to make more friends, it makes sense to dress to fit in. (Don’t do all the back to school shopping early. Get a first day outfit, see what kids are wearing and then shop.) Popular kids set the trends, but less powerful kids may be ostracized merely because they dress too immaturely or oddly. 9) Give some Leeway at Pickup Time After school is the perfect time for your child to chat with new classmates, or even plan an outing. Try to be there after school, so your child doesn’t have to wait, but set it up that you can wait a few minutes if they want to talk to new friends. Many individuals on the autism spectrum struggle with sensory problems: the lights are too bright, the fabric too scratchy, the noise simply overwhelming. Unfortunately, the neurotypical world is often unsympathetic. This can be especially true in school settings, where all kids are expected to fit in to all the same requirements. Every kids must survive a fluorescent lit classroom, the overly warm, fetid cafeteria, and a screaming, running recess "break". These sensory challenges can make a school day into a marathon of overwhelming and exhausting input. (And leave your kids too exhausted to tackle that pile of homework.)
I think it can be hard for neurotypicals to understand what these sensory issues can feel like. Of course, everyone is different and each person has their own particular issues. But I did want to pass along an interesting article on one individual's experiences of sensory challenges. Brian King is a social worker, as well as someone diagnosed with Asperger's as an adult. Check out the third issue of Brian's Spectrumite magazine to learn about what his experience is like. Talk to your kids about their experiences, and try to understand their own particular sensitivities. Maybe the school can be a little more flexible, or some sensory related modifications can be written into the IEP. Still not sure these sensory issues are real? Just think about biting on foil or scratching fingers down a chalkboard. Can you imagine trying to learn while that's going on? Autism Asperger’s Digest Magazine is one of my favorite publications for all sorts of information. In the latest issue, July-August 2009, page 11, there’s an interesting little news brief about a video game making class.
So many of the kids and teens (and a few of the adults as well) with whom I work love video games. And many kids on the spectrum aspire to a career as a video game designer. As a therapist, I try to focus on my clients’ strengths and interests, and expand them if possible. This class could offer an opportunity to expand an interest beyond just playing the game to learning some new skills. I’m not opposed to video games in moderation. Playing a video game can be a self soothing activity, or it can fill a crucial role as an emergency babysitter when the parents just have to cook dinner or finish the taxes. Certainly, for school age boys, video games are a part of the culture and they enable social connections and interactions to flow more smoothly. Of course, becoming a game designer as a career is unlikely, but the skills involved are useful regardless. The organization also offers a Lego engineering class, another common interest. You can get more information on both at All About Learning. |
Patricia Robinson MFT
I'm a licensed therapist in Danville, California and a coach for Asperger's and ADHD nationwide. I work with individuals of all ages who have special needs, like Autism Spectrum Disorders, ADD, ADHD, and the family members and partners of special needs individuals. Archives
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