10 Things for teachers; Ten things you should know: share it

[Guest guest]

First, thank you to all who share emails through such personal heartfelt stories, they inspire me in difficult times. As I think I mentioned before, Ellen has allowed me to share with others the "10 lists" under the condition that you use the way they are sent (let me know if your copies are not good). I will post and attach them exactly as she sent them to me. From me, , places that help me: As a mom, a psychotherapist (working with children/teens/grown adults with AS) I was fortunate to be introduced to BJ Freeman of UCLA...who could diagnose the most subtle characteristics of A at a young age), a massage therapist(got me into acupressure and cranial sacral therapy) who worked with children and teens as clients, and teacher, it is essential that we educate all professionals who deal with our children. There are so many clinicians who are not informed and are diagnosing children

inaccurately!!!!! This unnerves me! Here are some of my current favorite sites: I send everyone to the OASIS website which I think is so helpful!!!!! I also encourage everyone to check out the book by Judith Bluestein on Asperger (she had/s it) and you can find it at www.handle.com. I don't think you have to go and run to a HANDLE therapist...the book is a very valuable book with activities and exercises...that you can do or if you are working with an OT aware of sensory integration...then they pretty much know most of it. Many kids are dealing with sensory integration...so here is a new book to read by Lucy Jane called Sensational Kids about sensory integration...so essential...and let's all sum it up with www.allkindsofminds.org where Dr. Mel Levine has created teacher trainings that

would help ALL children With ALL Kinds of Minds. He also has lots of supportive articles and suggestions for parents. School Districts and affluent private schools are starting to incorporate his technology. Another very helpful place to check out is Cool Tools at University Elementary School at UCLA. It is child friendly language that helps prevent bullying and improve socializing. All children benefit from it. It helps elementary school children, but hey, I use the following cool tools idea with my couples...." Hurtful words are like toothpaste, you can't put them back into the tube". I think massage pressure touch down the spine and regular massage helps many kids also. So the following two articles are written by Ellen and are very helpful. TEN THINGS YOUR STUDENT WITH AUTISM WISHES

YOU KNEW These ideas make sense for other kids too © 2005 Ellen Notbohm Author’s note: When my article Ten Things Every Child with Autism Wishes You Knew was first published in November 2004, I could scarcely have imagined the response. Reader after reader wrote to tell me that the piece should be required reading for all social service workers, teachers and relatives of children with autism. “Just what my daughter would say if she could,” said one mother. “How I wish I had read this five years ago. It took my husband and I such a long time to ‘learn’ these things,” said another. As the responses mounted, I decided that the resonance was coming from the fact that the piece spoke with a child’s voice, a

voice not heard often enough. There is great need – and I hope, great willingness – to understand the world as special needs children experience it. Ten Things Every Child with Autism Wishes You Knew became a book in 2005, and now the voice of our child returns now to tell us what children with autism wish their teachers knew. 1. Behavior is communication. All behavior occurs for a reason. It tells you, even when my words can’t, how I perceive what is happening

around me. Negative behavior interferes with my learning process. But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow. Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from “bad” behavior. Negative behavior usually means I am overwhelmed by

disordered sensory systems, cannot communicate my wants or needs or don’t understand what is expected of me. Look beyond the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge. 2. Never assume anything. Without factual backup, an assumption is only a guess. I may not know or understand the rules. I may have heard the instructions but not understood them. Maybe I knew it yesterday but can’t retrieve it today. Ask yourself: · Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I’m asked to do a math sheet, maybe I don’t know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids. · Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn’t eat breakfast and am now famished. 3. Look for sensory issues first. A lot of my resistant behaviors come from sensory discomfort. One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me. The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes. Or maybe I need to sit closer to you; I don’t understand what

you are saying because there are too many noises “in between” – that lawnmower outside the window, Jasmine whispering to , chairs scraping, pencil sharpener grinding. Ask the school occupational therapist for sensory-friendly ideas for the classroom. It’s actually good for all kids, not just me. 4. Provide me a break to allow for self-regulation before I need it. A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn’t so far physically

removed that I won’t be able to rejoin the activity flow of the classroom smoothly. 5. Tell me what you want me to do in the positive rather than the imperative. “You left a mess by the sink!” is merely a statement of fact to me. I’m not able to infer that what you really mean is “Please rinse out your paint cup and put the paper towels in the trash.” Don’t make me guess or have to figure out what I should do. 6. Keep your expectations reasonable. That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me. Maybe I’d be better off helping the school secretary put together the newsletter. 7. Help me transition between activities. It takes me a little longer to motor plan moving from one activity to the next. Give me a five-minute

warning and a two-minute warning before an activity changes – and build a few extra minutes in on your end to compensate. A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently. 8. Don’t make a bad situation worse. I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment. I truly don’t mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis: · Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words. · Mocking or mimicking me. Sarcasm, insults or name-calling will not embarrass me out of the behavior. · Making unsubstantiated accusations · Invoking a double standard · Comparing me to a sibling or other student · Bringing up previous or unrelated events ·

Lumping me into a general category (“kids like you are all the same”) 9. Criticize gently. Be honest – how good are you at accepting “constructive” criticism? The maturity and self- confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly,

so that I actually hear you. · Please! Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you. · Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me. · Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response. · Practice or role-play – show me—a better way to handle the situation next time. A storyboard,

photo essay or social story helps. Expect to role-play lots over time. There are no one-time fixes. And when I do get it right “next time,” tell me right away. · It helps me if you yourself are modeling proper behavior for responding to criticism. 10. Offer real choices – and only real choices. Don’t offer me a choice or ask a “Do you want…?” question unless are willing to accept no for an answer. “No” may be my honest answer to “Do you want to read out loud now?” or “Would you like to share paints with ?” It’s hard for me to trust you when choices are not really choices at all.

You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself. Providing me with frequent choices helps me become more actively engaged in everyday life. · Whenever possible, offer a choice within a ‘have-to’. Rather than saying: “Write your name and the date on the top of the page,” say: “Would you like to write your name first, or would you like to write the date first?” or “Which would you like to write first, letters or numbers?” Follow by showing me: “See how is writing his name on his paper?” . · Giving me choices helps me learn appropriate behavior, but I also need to understand that there will be times when you can’t. When this happens, I won’t get as frustrated if I understand why: o “I can’t give you a choice in this situation because it is dangerous. You might get hurt.” o “I can’t give you that choice because it would be bad for Danny” (have negative effect on another child). o “I give you lots of choices but this time it needs to be an adult choice.” The last word: believe. That car guy Henry Ford said, “Whether you think you can or whether you think you can’t, you are usually right.” Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I

can sense is whether or not you think I “can do it.” Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I’ve left your classroom. © 2005 Ellen Notbohm Ellen Notbohm is author of the new book Ten Things Every Child with Autism Wishes You Knew, winner of iParenting Media’s Greatest Products of 2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine’s 2006 Teacher’s Choice Award, from

which this article is adapted. A columnist for Autism Asperger’s Digest and Children’s Voice, her articles on autism have also appeared in numerous and websites. Your comments and requests for reprint permission are welcome at ellen@.... TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW by Ellen Notbohm Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute -- the inconsistency There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult. Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every

day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood. Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental

areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs. Here are ten things every child with autism wishes you knew: 1. I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents,

or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can

do it,” my natural response will be: Why try? 2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or

belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room

seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space. 3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “* & ^%$#@, . #$%^* & ^%$ & *………” Instead, come speak directly to me in plain words: “Please put your book in your desk,

. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply. 4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake”

when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Please just tell me “It’s raining very hard.” Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me. 5. Please be patient with

my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language

deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply. 6. Because language is so difficult for me, I am very visually oriented. Please show me how to

do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. Here’s a great website for learning more about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm . I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words. 7. Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not

good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things. 8. Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?” 9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior. 10. If you are a family member, please love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart.

Or Van Gogh. They had autism too. The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead? All that I might become won’t happen without you as my foundation. Think through some of those societal ‘rules’ and if they don’t make sense for me, let them go. Be my advocate, be my friend, and we’ll see just how far I can go. © 2005 Ellen

Notbohm Ellen Notbohm is author of the book Ten Things Every Child with Autism Wishes You Knew, winner of iParenting Media’s Greatest

Products of 2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine’s 2006 Teacher’s Choice Award. A columnist for Autism Asperger’s Digest and Children’s Voice, she is also a contributor to numerous magazines and websites. Your comments and requests for reprint permission are welcome at ellen@.... Warmest Regards, Culp, MFT, CD, CPD www.Culp.com (310) 917-9969 Licensed Marriage & Family Therapist: Couples with children, Individuals (depression, anxiety, trauma,

wellness, grief & loss): conception counseling, postpartum moods, & fertility. Children & Teens. Parenting from the Inside Out Classes & web exchange at parentingfromtheinsideout