This morning I was driving past a middle school just as the kids were walking in. I think there is some kind of science project due today, because a lot of the kids, who looked like eighth graders, were carrying massive airplanes, catapults and mazes. They were beautifully built, sturdy and streamlined, and very professional. Wait a minute! Why are a bunch of 13 year olds carrying professional projects? Who built those projects? How many 13 year olds know how to saw, drill, and especially design machines like this? I suspect a lot of parents had to make these out of control projects. Is there a point to this?
Homework is a problem for so many families. I think it’s even harder for special needs families, because they’ve already got extra responsibilities, Therapy takes time, Floortime takes time, play dates take time. Then add in a bunch of worksheets and projects and there isn’t any way to manage everything. Sadly, the research on homework and its effectiveness is not very compelling. Although some studies show it’s effective, others show that it isn’t. For something to dominate the free time of so many families, I think there really should be good evidence that it works. Recently, the San Ramon Valley Unified PTA parenting conference showed the documentary Race to Nowhere. This film examines the pressure on today’s school kids and families. It doesn’t have a special needs focus, but it’s relevant to every family with kids in school. There are many local screenings here in the Bay Area as well as elsewhere, so it’s worth trying to find a showing. There’s also a great blog on homework written by a Danville, CA mom, Kerry Dickinson, called East Bay Homework Blog. I just discovered it, so I haven’t read all of it, but there are excellent arguments against the mindless assignments so many kids are getting, as well as many links to other sites. Kids need free time. Parents need free time. We all need time to relax, enjoy each other's company, have some fun. Take a look at how your family is spending their time. Is building a catapult what you'd choose to do? The Alert Program for self regulation is a wonderful tool for kids (and adults) who struggle with managing their own level of attention. Throughout the day, kids are expected to adjust to the school schedule. They have to jump into the morning bright and attentive, while still sitting quietly and listening to the teacher, then move into socializing at recess, then sit right back down, up and down, all day long. And the demands don’t end with the school day. Kids today have homework, classes, practices and activities. The pace alone can make it hard for any kid to manage, and it’s especially difficult for those kids with ADHD. (A lot of kids on the autism spectrum fall into this category as well, even if they don’t have an official ADHD diagnosis. The Alert Program was developed by Mary Sue Williams, OTR/L and Sherry Shellenberger, OTR/L to bring together ideas from sensory integration and present them in a way that’s concrete and easy for children to utilize. It was developed for kids, but has been adapted for teens and adults, and I find it useful for almost any age client. You can learn more about the Alert program from their website, or the book “How Does Your Engine Run?” : A Leader’s Guide to the Alert Program for Self-Regulation. My upstate New York family may be getting snowed on, but here in the Bay Area, it's spring, with daffodils and cherry blossoms, and that means it's not too early to starting thinking about summer activities for your kids. There are many summer camp programs and a lot of them are geared toward kids and teens with special needs, like autism, Asperger’s, ADHD or other social or emotional issues. Many of these programs fill up quickly, especially those for older campers and the counselor in training programs, and some camps offer a discount for early sign up. Here is a list of just a few, those I’ve heard about that might be worth checking into for your child. Please do your own research since I’m only reporting what others have told me, I’m not professionally or personally involved in any of them. And, if you are aware of other East Bay programs for the summer, please let me know. I’ll edit the post to include anything else I hear of.
Thanks to the members of eastbayautism@yahoogroups.com for your ideas. If you're ever trying to solve a problem and can’t quite come up with the right resource, this group is the place to go. Someone in this group of very helpful people always knows the answers. Strawberry Canyon Blue Camp's Social Skills camp, on the UC Berkeley campus offers a program for kids with social skills deficits, grades 3 to 12. Younger kids are in groups with a leader, but take part in their activities along with the typical kids from the larger daycamp. For teenagers with special needs, the camp offers a counselor in training program, with focus on social skills as they relate to job skills. Quest Camps in Alamo offers programs for campers from ages 6 to 18, with special responsibilities and programs for teen campers. They have daily activities, field trips and therapy. Trails to Success offers their summer camp programs in Orinda. They also have a counselor in training program for teenagers. Walnut Creek offers a summer therapeutic program through the city parks and recreation. We Care in Concord has also offered an autism summer camp, although I only found online information on the 2009 program. The Easter Seals Kaleidoscope program in Dublin offers an after school program, and I'm told they extend their schedule to longer days over the summer. Sarah’s Science “This Land Is Your Land” camp is not designed specifically for special needs children, but the science and nature themes may be of interest to many kids. A mom told me that her son with Asperger’s really enjoyed the camp. Older campers can do more challenging projects, and there is a counselor in training program. The camp is located in San Ramon, Berkeley, and Oakland. Tech Know How offers camps on computers, Legos and game design. Again, this camp is not designed specifically for kids with special needs, but it does match well with the interests of many kids on the spectrum, and a mom reported her child with Asperger's enjoyed it. They have locations throughout the Bay Area. Boy Alone is a gripping, honest, and heartbreaking story of a family caught up in trying to raise a severely autistic child in the 1960s and 70s, told from his now adult brother’s perspective. Karl Taro Greenfeld is two years older than his brother Noah, so he barely remembers life without him. Noah, who spoke for a brief period, regressed at age two and his family began a decades long struggle to find answers. It’s a journey many families go through, first that nagging doubt that something is wrong, then searching for a diagnosis that fits, and seeking just the right treatment, one that might lead to a cure, or an improvement, or finally, sometimes, just hoping their child is safe and cared for. Through it all the Greenfelds, like most of these families, struggle to maintain hope in the face of ever multiplying disappointments. Greenfeld documents these experiences in his family with a haunting clarity. Beyond the story of the family is a more personal memoir about a sibling’s experience. Greenfeld writes honestly from his own perspective, chronicling his childhood confusion, his adolescent resentment, and his adult despair. Through it all, he maintains what one reviewer called a “ruthless honesty”, owning the hard truths that so many books shy away from.
When I work with the siblings of special needs kids, I’m always struck by the idea of “mixed feelings”. Children love their special needs siblings, bond with them regardless of the difficulties, but too often, they’re expected, or expect themselves, to ignore the uglier aspects of the truth, the feelings of loss and grief, the rivalries, anger, embarrassment, and even hatred they may be feeling. That’s why Boy Alone can be so valuable for parents, older teens and adult siblings. Karl Greenfeld is not the only sibling to struggle with his feelings toward a disabled brother, but he’s one of the few who is able to step back into his childhood emotions, presenting the truth about his feelings and experiences with a raw substance, even decades later. Siblings often feel very alone in what they're going through. This book can help them feel connected. Social skills get more subtle once kids reach high school, and that’s a time when many teens with autism, Asperger’s and ADHD really start to struggle with friends and peer relationships. Often, these kids have gone through the basic social skills training at school or in a social skills group when they were younger. By now, they want nothing more to do with a formal class, but they’re still missing out on some of the more subtle details.
I thought TV episodes might be a useful, fun way to help teens look at social signals. Although the plots of a lot of teen programs are pretty unrealistic, the situations more mature, and the conversations often more adult and introspective than teens really use, the settings are familiar, and the programs are something teens will relate to. They also tend to use body language, but in a bolder, broader way, which can be easier for teens on the spectrum to pick up on. Finally, because these scenes are online, you can watch and rewatch as many times as you want to catch the details, even muting the dialogue to shift focus to the nonverbals. This week I’m looking at some personal space and nonverbal communication issues as illustrated by the show Glee. You can see these episodes on Hulu.com for free. Note to parents: some of you may object to the more mature themes in this program. I’ll be looking for other shows to comment on as well, but before banning the program, consider if this is something all the other kids at school are watching. Not having seen a popular show can make it hard for kids to fit in. You can watch together, and discuss issues, such as is this scenario realistic, or appropriate, or does this fit with your own values. (If you have a particular show that’s online that you’d like me to analyze, please comment here, or send me an email.) In Glee, Season 1 Episode 9, Wheels, the show starts with scenes of cheerleading practice. Sitting alone in the bleachers is blonde Quinn, soon to be joined by tall, dark haired Finn. (If you’re new to this show, it might not be obvious from the ways they’re acting that these two are a couple.) Notice the tense body language. As Finn approaches, he doesn’t greet Quinn, he just sits down, at a distance that’s not typical for a dating couple having a one on one conversation. Quinn doesn’t turn to Finn, she doesn’t lean toward him or adjust her body posture, she barely even looks at him. Before anything is said, and without knowing anything about the plot, it’s clear that this pair is not feeling close and connected. Throughout their scene together, Quinn only turns her eyes or occasionally her face to Finn, never her shoulders or the rest of her body, a clear sign of discord between the pair. Now look at Season 1, Episode 10, Ballad. The show starts with all the students sitting on the bleachers, spaced evenly with almost mathematical precision. (Your teen may not be aware of this spacing rule, but it’s pretty consistent in our culture. People tend to space themselves out fairly evenly, sitting closer to close friends, but not sitting next to strangers unless the space gets more crowded. Think about a movie theater. If it’s almost empty, sitting in adjacent seats is something only friends do. Strangers space themselves out. As the theater fills, it’s not threatening or inappropriate to sit next to strangers.) The exception to the Glee bleacher spacing, which may not be obvious to kids who don’t pick up on social cues, is Quinn and Finn, sitting together as a couple. Finn’s posture isn’t that different than in the previous episode, but now Quinn is leaning into Finn, almost draped on him. Clearly, she is in a different mood than the previous episode. Notice also that the rest of the students are angled slightly toward the center, indicating some cohesion, and friendship alliances can be gauged just by noting who is sitting together. When the teacher asks, “Who knows what a ballad is?” notice how Rachel immediately thrusts up her hand with too much enthusiasm. Can your child glean information about Rachel’s character from this simple action? Well, I’ve watched about 5 minutes of TV, and written a full post on the details. What details can you and your teen pick up from body language? I’ve written on several occasions about Stanley Greenspan, M.D. and the DIR® Floortime™ program. I really like this program for several reasons. DIR® Floortime™ can be done by parents, in the home, it doesn’t have to preclude the use of other therapies, such as ABA, and it is very much a social and relational based model, which makes sense to me as a psychotherapist. Of equal value, parents can get started pretty quickly, by reading books, joining an online group, or taking courses, even if they’re waiting for a diagnosis, or in a long line waiting for services. If money is tight, parents can get training relatively inexpensively, and get started without a huge investment. The model helps parents learn to interact with their children in a more engaging manner, taking the child’s developmental level into account and gently helping the child to progress. For parents hoping to enhance their child's social skills, DIR® Floortime™ can be a great place to start.
Stanley Greenspan, M. D. is presenting the Basic Course on the DIR® Floortime™ Model online for parents and professionals, starting on March 12, 2010. I took this online course a few years ago, and really appreciated the ability to take it from home, review the materials as many times as I wanted, and the chance to see Dr. Greenspan in action with children, as well as the relatively low cost. There are also a few workshops being offers, A Lifespan Approach to Autism, Meltdowns, and Regulatory Sensory Processing Disorders. For adults on the autism spectrum, including those with Asperger’s, sensory issues can be a major problem. Clothing textures are irritating, foods taste and feel unpleasant, lights may be glaring and noises and odors overwhelming. These issues can be a major contributor to problems with social interactions and managing work environments. Often, children diagnosed with autism spectrum disorders (ASDs) like Asperger’s, autism, or PDD-NOS, as well as those with ADHD are under the care of a medical doctor who recommends Occupational Therapy as a part of treatment. OT can be invaluable in helping these children manage sensory problems. Unfortunately, many adults on the autism spectrum were not diagnosed as children, and only figure out their issues when they self diagnose as adults. Learning about autism and Asperger’s can help many adults adapt to their own deficits and start to utilize their strengths more effectively. Frequently, looking at sensory integration and sensory defensiveness can add immeasurably to the quality of life for adults with ASDs as well. There are several good books on sensory integration and sensory processing, but generally they concentrate on children’s issues. Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World, by Sharon Heller, Ph.D. (2002, Harper-Collins) is an excellent guide that's written more for adults.The beginning of the book explains sensory processing and details the many ways that sensory defensiveness can manifest itself in different individuals. Heller focuses on the different senses and how each sense can individually vary for different people. While some people are tormented by tactile sensations, others struggle with smells and tastes. The most useful section of the book called “Your Sensory Diet” lists dozens of activities and lifestyle changes that individuals can make to improve their sensory experiences. Appendix B lists the many ways in which different individuals may react to sensory issues. I think a lot of people, both on the spectrum and neurotypical, will recognize themselves in some of these areas.
While many adults may (and should) decide to see a specialist, such as an Occupational Therapist, to get treatment for sensory issues, this book is both a useful introduction to sensory processing, and a reference book packed with ideas to get the problem under control. Girls with Asperger’s and autism seem to be more involved with TV, movies and the whole celebrity culture than neurotypical girls. For these girls, the restricted interests that are a part of the autism spectrum often fall into the realm of pop culture and celebrities. Add in the facts that these girls aren’t connecting as well with their peers, and often struggle athletically, and the result is that teen and tween girls on the spectrum can spend all their free time watching favorite TV shows, reading about celebrities and Googling them on the internet.
One big concern about this is that the messages the media send to young girls are anything but positive. Pressures about image and consumerism are rampant. Girls may feel they can’t measure up. It’s not surprising because the media images are not just unrealistic, but often completely false. There are some fascinating sites online that show just how invalid media ideals can be. Check them out with your own daughter, and have a conversation about what the media is presenting as beautiful. Jamie Lee Curtis started the whole discussion years ago, by allowing photographers to document her appearance before and after a team of experts polished up her appearance. Dove has a great campaign including a fascinating video called Evolution, showing how makeup and Photoshop transform an attractive, but normal, young woman into a billboard image. There are other sites that show some of the worst offenders of modified images from magazine covers. You can't change what your daughter finds fascinating, but paying attention and connecting over her interests can make a positive difference in your relationship and her self esteem. The holidays are coming up and for a lot of people that means getting together with extended family and relatives you haven’t seen in a while. This can be a great chance to connect, feel supported, even show off a bit with all the progress your child has made.
But it can also mean unwanted advice. Your parents, your sister-in-law, your best friend from high school probably mean nothing but the best for you and your family. But they also may not have a special needs child and they may not understand what it is that your family is going through, or what your child needs. So often I’ve heard the same story from clients. A well-meaning relative says something like, “If only you’d do _________, your kid wouldn’t do _______.” or “Trust me, your kid just needs more __________, and he wouldn’t be so _____________.” You can probably fill in the blanks, there’s a lot of advice out there. The fact is, and I’ve said it before, some kids are just tougher to parent than others. Your nieces and nephews may just be incredibly easy-going children. It doesn’t mean that you are not also a good parent. Your child may just be wired differently, temperamentally more sensitive, more strong-willed, or more emotional. I’ve worked with so many different kids over the years. The truth is, some of them are so easy and low key, they practically parent themselves. Other kids are so difficult, it’s hard to manage them for just a brief while, much less an entire holiday vacation. Add in some travel time, late nights, too much stimulation, and it’s not surprising that things get out of hand. So this holiday season, I’m asking you to trust yourself and the parenting skills you’ve developed by taking care of your child for all this time. Listen to the advice politely if you want to, but don’t think that any other parent is more capable than you are. Your child is lucky to have you as a parent. I’m thankful for all my wonderful clients, parents, and readers! Happy Thanksgiving! A few posts ago, I talked about transition planning for teens and how important it is to start planning early. At that time, I wasn’t sure when the Transition Conference for Contra Costa County was being held. But now you can download a copy of the Conference Brochure. It’s being held at Diablo Valley College in Pleasant Hill, California on Tuesday January 5, 2010. This conference is a great resource for adults and parents of teens, with a full day of presentations on living options, employment, financial needs, sexual issues, disability services at community colleges.There is also a resource room for more info about services. Download the Conference Flyer Here.
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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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