You do everything the experts advise. You set up rules and rewards and consequences and you’re as consistent as possible. But still, your child melts down, throws a tantrum in front of everyone, screams and yells, and you’re left embarrassed, judged, angry, and thinking that you don’t know what you’re doing. Maybe it’s not that you’re doing anything wrong. Kids with special needs can be difficult to parent. So often, well meaning - or maybe just nosy - friends, relatives and even your own parents may not understand it. “If you’d only…, be tougher, be less tough, do what we do, whatever,...your child would be as well behaved as mine.” But that advice only works for their children. It may not work for yours. The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children, by Ross W. Greene, Ph.D. may be exactly the help your family needs. Greene presents a different theory behind the meltdowns, the idea that children behave well when they can. And when they don’t manage to hold things together, through tantrums and worse, it’s not that these children don’t know right from wrong, or that they don’t know that their parents are the boss. Kids throw tantrums because they don’t have the skills to behave better. Greene posits that weaknesses in “flexibility and frustration tolerance” can trigger these meltdowns. These “pathways” to meltdown include “executive skills, language processing skills, emotion regulation skills, cognitive flexibility skills, and social skills.” That’s a pretty complete list of what a lot of children with ASDs or ADHD may be struggling with. And, the “triggers” to these tantrums are probably pretty predictable as well. Further, Greene states that continuing to fight, struggle, set a line in the sand, put your foot down, can be just doing more of what wasn’t working in the first place. Greene’s plan involves moving beyond the extremes that parents often choose: either insisting on the adult’s way (Greene terms this Plan A) or giving in to the child (Plan C) to a Plan B, involving collaborative problem solving. In collaborative problem solving, the parent is really functioning as a “surrogate frontal lobe” and helping the child develop those skills necessary to manage tough situations. Greene looks at triggers to explosions, and develops plans to be proactive in avoiding meltdowns, as well as coming up with quick emergency plans for when explosions are about to happen. Of course, every child is different, and it’s difficult to fit an individual, or a family, into a prewritten book. But Greene give numerous examples, asks some tough questions, and really helps the reader envision how this different way of looking at parenting challenging kids may be the answer. His writing is so clear and methodical that it easily moves the frustration of parenting into a logical, problem solving arena. I encourage parents to read this book carefully, think about your own family dynamics, and try these techniques out for your own family. Many parents worry about labeling their child, stigmatizing them, or excusing behavior problems, if they tell their child that he or she has a diagnosis of Asperger’s, autism, or ADHD. I’ve found just the opposite. Kids know that they are getting in trouble in school, they know that other kids seem to have an easier time with following the rules or making friends, but without knowing about their own diagnosis, they just think that they’re bad or stupid. To me, that seems so unfair! I firmly believe that parents should tell their kids, in an age appropriate way, of course, about their diagnosis, and the strengths and difficulties that go along with that diagnosis. Books are a great way to enhance a conversation about your child’s diagnosis. For kids with ADHD, All Dogs Have ADHD, by Kathy Hoopman is a fun and positive option. The book is a simple read, with cute pictures of dogs, and nicely presented, non-judging comments about behaviors and symptoms. Problems are presented realistically, such as social issues or difficulties with following directions, but the book also presents the energy and fun that can make kids with ADHD such a joy to be with. The NBC show Parenthood has brought increasing attention to the diagnosis of Asperger’s, with one of the show’s characters, Max Braverman, newly diagnosed with Asperger’s. With a large, multigenerational cast about many family members, Asperger’s is not the focus of the show, but just one storyline. I like that aspect, because it’s so realistic; the family copes with Asperger’s, its treatment, symptoms and behaviors, but life doesn’t stop. Work continues, other family members have their own needs, the parents have a relationship that includes dealing Asperger’s, but other aspects as well. One recent episode, Team Braverman, focused on the family’s participation in an autism fundraiser. An interesting aspect was that the episode raised the question of when to tell a child about his own diagnosis, something which clients ask me frequently. In the show, Max’s parents asked their vaguely defined diagnosing professional, Dr Pelikan, about what to tell their son. His advice was that there is no one answer, but it was important not to “burden him with information he’s not going to be able to process.” and “when it’s time to talk to him about it, you’re going to know: Max is going to tell you.” The parents later state that this advice is not very helpful, and not very comforting. At the end of the episode, Max asks what I view as the perfect opening question for a discussion of his diagnosis: “Why we did we give the money (we raised) to autism? There are lots of other charities.” Dad Adam looks thoughtful, but passes on the opportunity to have a meaningful discussion about his son’s diagnosis, instead commenting on the trophy. I agree that children need an age appropriate explanation, but in my experience, kids never seem to find this information a “burden”, instead it’s typically a relief, because they’re aware that their behavior and relationships aren’t like those of other kids. I also agree that kids ask questions when they want to have more information, but they may be subtle questions. Just like with other difficult discussions, parents, like Adam Braverman, can easily miss the cues if they’re not comfortable having the discussion. Shows like Parenthood can be so valuable because they allow parents a bit of practice time to think about these issues before confronting them in their own families. If you missed it, Team Braverman, season 1, episode 12, which aired May 18, 2010, is available online. It’s a persistent urban legend that autism in a child results in divorced parents. As I discussed in my post Divorce, Single Parenting and Autism, Some Data, published 4/30/2009, people quote divorce rates as high as 80 to 90% in families with autistic children, but they never seem to cite any evidence to back up those claims. When I first heard those numbers, they were so alarming, I did some research of my own and couldn’t come up with any studies showing the 80% divorce rate. Actually, there wasn’t much evidence of any kind out there, other than an Easter Seals study of 1652 families, along with a control group of 917 families. The Easter Seals study showed that families with autistic children were actually less likely to divorce than families without special needs children.
Now there’s a new study from the Center for Autism and Related Disorders at Kennedy Krieger Institute. The study found that “64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.” The study used a sample size of over 77,000 children. The review article doesn’t specify exactly how many of these 77,000 children were dealing with autism, but at a standard rate of 1 in 100 children, we could expect this study represents about 770 children on the spectrum. Also, thanks to GRASP for mentioning this study in their monthly newsletter. Every month they publish an array of interesting articles related to autism and Asperger's. Do pesticides cause ADHD? Should parents feed their kids only organic products? Should adults with ADHD eat only pesticide free foods? These questions are being asked frequently right now due to a recent study published in the June, 2010 issue of Pediatrics, showing a possible link between organophosphate pesticide use and increasing rates of ADHD. Of course, no one study can prove anything, and people need to use caution in making decisions regarding their own and their children’s health, but anyone concerned about ADHD should learn about this study.
If you’re looking for information, Medscape published a good review. Regarding the study, Michael L. Goldstein, MD stated, “(The report) …. certainly got my attention when I read it; I was really impressed by it. I think it is a groundbreaking study.” Dr. Goldstein is a specialist in child neurology with Western Neurological Associates in Salt Lake City, Utah, and a faculty member of the American Academy of Neurology. Dr. Goldstein said the data on organophosphate pesticides and ADHD "look like the data we saw 30 to 40 years ago with lead exposure, and it may turn out to be the same thing — that even small exposures (to organophosphate pesticides) are very harmful to kids." Dr. Andrew Weil, the founder and director of the Arizona Center for Integrative Medicine at the University of Arizona Health Sciences Center, also comments on this study in his article Pesticides and ADHD, saying that he’s not surprised by these results. Setting up a special needs trust for your child is a complex situation requiring expert advice. I am not that expert! However, I did hear about an upcoming event, and since I’m not affiliated with this group, I’m pulling directly from the flier they sent me.
The event takes place on June 9, 2010, from 6:30 to 8:30 PM, to be held at Fremont Bank’s Bankers Building, 7611 Niles Blvd., Fremont, CA 94536. Topics to be discussed include: • The Benefits of a Special Needs Trust • What assets can be used to fund the Trust • Choosing the right Trustee • How California’s Budget Crisis will affect our Special Needs The speaker for this event, Stephen Dale, received his law degree in 1982 and teaches courses on special needs trusts and trust administration to the public, financial professionals and other attorneys. He is a national member of the “Special Needs Alliance” of attorneys and has written several publications related to special needs planning. For more information on this presentation, call (800) 504-4721. There are several opinions about teaching children with special needs to use scripted social skills. For kids who struggle with reading and sending social messages, such as those with Asperger’s Disorder, Autistic Spectrum Disorders including Nonverbal Learning Disorder (NLD), as well as Attention Deficit Hyperactivity Disorder (ADD or ADHD), figuring out subtle messages can be much too challenging. A set of scripted, simple rules and guidelines may be useful in getting a general plan of action. (An example of a scripted response might be, “Say hello when you walk up to one person, but not when you enter the classroom.”) At the same time, trying to memorize and apply dozens of social rules can be overwhelming. It may even backfire because a person attempting to apply specific rules while in the midst of a confusing situation is not going to be able to focus on reading what’s going on. As is usually the case, I think the optimal answer lies somewhere in the middle.
Ideally, parents, teachers and therapists should be helping children figure out how to read social cues and how to naturally respond to them. This may accomplished in a completely organic way, with a parent getting a “hello” back from an engaged baby. In more difficult situations, trained adults can be working deliberately to engage the child and get a natural response. This is similar to techniques that might be used in Dr. Stanley Greenspan’s DIR® and Floortime™ model. Setting up frequent playdates gives the child the opportunity to interact frequently with peers and may be a way to give practice in reading and responding to social cues in a natural and unscripted manner. This can be tricky because kids who are socially skilled are probably not going to adapt their interactions to be less subtle or more engaging in order to interact with a child who is struggling. Too often the socially skilled children will just stop playing with, or worse, start teasing or excluding the less skilled children. Playdates with two or more children who are all struggling socially may be the best choice for allowing friendships to develop and social skills to grow. This situation is not without its challenges. Some degree of adult involvement may be necessary in order to ease the relationship. For example, initiating a playdate may be the most challenging step. Teachers and parents may have to help set up the initial connection. While the children are playing, it may be necessary to have an adult present to help all the children interact smoothly. Because all the children may struggle to both read and send signals, the interactions can be difficult for everyone. When all goes well, the children can develop truly deep and important friendships that move beyond the more formal playdate setting. In addition, the skills are learned in a realistic way, so the problems with generalizing lessons to a different setting don’t occur. When more natural interactions with adults and peers are not effective, then formal, scripted skills may be helpful. I view these scripts and rules as a way to ease into more ordinary, real-life interactions. An example of this might be a teacher prompting a shy child on how to approach a classmate, so they can sit together for lunch. Here, the most productive interactions will occur when the kids are eating and talking together without the teacher, but the more formal rules will help the child get to that point. This example really illustrates the ideal situation. Allow the child to have as many natural and rewarding interactions with others, both children and adults, as possible. Use more formal social skills training to ensure that these natural interactions can take place and that they run smoothly. Take the time to analyze and understand the subtleties, and more important, set up a plan to make the interactions more productive next time. A few local notes of interest to those here in the San Francisco Bay Area’s East Bay. California State University, East Bay is offering a variety of reading skills, reading comprehension, study skills and speed reading classes this summer in Danville and Walnut Creek. These classes include programs for ages 4 up through adults and college students. For more information, call them at (800) 979-9151.
Some of my regular readers may be aware of my concern about the vast quantity and poor quality of homework that fills our children’s time, not to mention the tremendous pressure kids are under these days. For a moving and thought provoking look at this topic, please make an effort to see the locally produced documentary Race to Nowhere. The film will be shown in Danville, California, on June 1st, 2010 at Monte Vista High. For information, and other screening times and locations, visit the Race to Nowhere website. Smart but Scattered, by Peg Dawson, EdD, and Richard Guare, PhD, is one of the reasons I combined my two blogs into one. Social Skills For Kids was aimed at parents of children with ASDs and ADHD and Coach for Asperger’s was aimed at adults with these conditions. But, often, resources work for both kids and adults, even when they’re aimed at one or the other, which is why I’m now writing this combined blog. For individuals of all ages, with Asperger's, ADHD, autism, an autism Spectrum disorder, or a combination, executive function can be a real problem. Smart but Scattered calls itself “the revolutionary ‘Executive Skills’ approach to helping kids reach their potential”, and that the real benefit of this book. Executive function has been discussed a lot recently, and many people understand that deficits in executive functioning can impact all types of achievement. Smart but Scattered takes that rather abstract idea and brings it to a concrete, example and solution packed level. The book details what the authors consider the 11 skills that make up executive function: response inhibition, working memory, emotional control, sustained attention, task initiation, planning and prioritization, organization, time management, goal-directed persistence, flexibility and metacognition. As an engineer, I learned that any time you can break a problem down into small parts, it’s much easier to solve. This list is probably the best breakdown of the executive skills that I’ve seen in a book for kids or adults. From my work with clients, I know that individuals struggle with different aspects of these executive skills, and that most people are pretty good at figuring out just where their problems are once they’re given a list like this. Sometimes it takes a bit of coaching, or detailed questions, but generally, both adults and teens can figure out their deficits. Parents usually know their own kids well enough to figure out where they’re struggling as well. Smart but Scattered takes a developmental approach to these skills which I find less practical, since growth at all levels can continue for a lifetime. But, the specific examples and definitions are helpful, and there are questionnaires for different ages, including adults. The second half of the book lists plans for tackling specific tasks. It seems like parents could just as easily make up their own, more applicable plans, but for adults who struggle, these might be very helpful. Basic skills like cleaning a room or managing open ended tasks are not that easy without strong executive skills and these lists can be helpful. (For other detailed plans for adults, you can refer to Life and Love: Positive Strategies for Autistic Adults, by Zosia Zaks, as reviewed in a previous post.) Overall, Smart but Scattered is an easy read, filled with lists, table and charts to make it straightforward, and it could be very useful for parents, teens and adults. Starting Monday, April 5, 2010, the PBS show Arthur is introducing a new character, Carl, who has Asperger’s Syndrome. You can read about the episode on the Autism Society website.
I don't follow Arthur regularly, so I can't comment on the program. But, TV is an excellent way for you to open a discussion on the condition with your diagnosed child as well as his or her siblings. Asperger's is a broad spectrum and kids will have a variety or behaviors. Watching the show together then lets you talk about things like how similar Carl's behavior is to your child's, and how the kids at Carl's school treat him, compared to the kids your child goes to school with. |
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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