Burps Bibs and Beyond

2007-09-11T07:28:00.000-07:00

I have recently read three books which might be helpful for the siblings of children on the autistic spectrum or for anyone who comes into daily contact with such a child.

The first one, The Autism Acceptance Book: Being a friend to someone with Autism is particularly interesting .The suggested portions of "walking in their shoes" provided a simple way for the kids to begin to understand what it might be like to have ASD. The book provoked wonderful questions from the kids and referencing the book I was able to give understandable answers. Its sensitively and intelligently describes Autism.. This book and others like it will help children that don't have autism to better understand those who do have autism. The book strikes, in my view, just the right tone to give a young person insight into the needs and differences of a person with autism, without resorting to or promoting condescension or pity toward people with differences.

The second book is ALL ABOUT MY BROTHER, by Sarah Peralta. In her new book, All About my Brother, Sarah explains her brother, Evan, to her readers with compassion, entusiasm and a true appreciation of his abilities. If I could give a gift to every individual on the spectrum , it would be a sibling as wonderful as Sarah. This book shpould be in the home of every family with a member on the spectrum. It should be read to and by brothers and sisters,neighbors, and peers, It belongs in every school library. Sarah was eight when she wrote this book, but her wisdom and optimism are ageless. loved the way Sarah used technical terms she learned from Evan's team intervention specialists. When she uses them, she says quite matter-of-factly, "All I know is we have fun." I like the way she interacts with Evan and accepts and loves him unconditionally. All of the things they do together and all of the socialization she unwittingly teaches him through natural example, she is doing it for love and because it's just plain fun.

The third book is Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autism by Fiona Bleach. This is an excellent teaching tool that paves the way towards acceptance of persons who display autistic behavior. Autism and its related neurobiological condition, Asperger's are spectrum conditions. Common spectrum behaviors include a myriad of sensory issues such as strong aversions for loud noises; strong reactions to certain smells and tastes and distinctive speaking styles. Many spectrum behaviors overlap and Asperger's, while considered at the higher end of the autism spectrum does indeed share common neuro-sensory ground with autism.

This book does a heroic job in explaining and addressing these issues to young children. It is a good way of empowering children on and off the spectrum with knowledge that will in turn pave the way to greater acceptance.

I will review more book choices in the next entry to the blog.
Linda

2007-07-11T21:04:00.001-07:00

TEN THINGS YOUR STUDENT WITH AUTISM WISHES YOU KNEW (PART 2 – THE SECOND FIVE)

These ideas make sense for other kids too

© 2005 Ellen Notbohm

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” beyond
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 William?” 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 Jason 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 Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew, both ForeWord Book of the Year finalists and iParenting Media Award recipients. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and websites around the world. Her new book, The Autism Trail Guide: Postcards from the Road Less Traveled, is a September 2007 release. To contact Ellen or explore her work, please visit www.ellennotbohm.com .

TEN THINGS YOUR STUDENT WITH AUTISM WISHES YOU KNEW - PART 1

2007-06-04T07:21:00.001-07:00

TEN THINGS YOUR STUDENT WITH AUTISM WISHES YOU KNEW (Part 1 -the First 5)

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 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 Tanya, 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.

© 2005 Ellen Notbohm

Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew, both ForeWord Book of the Year finalists and iParenting Media Award recipients. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and websites around the world. Her new book, The Autism Trail Guide: Postcards from the Road Less Traveled, is a September 2007 release. To contact Ellen or explore her work, please visit http://www.ellennotbohm.com/ .

Part 2 of this article will be published in the near future. Please be sure to check back
frequently for further updates.

Grandma on Autism

2007-02-15T09:31:00.000-08:00

My grandson is autistic. This was a very hard concept for me to wrap my brain around. My precious grandson is autistic. When my daughter first suspected there was a problem, I could handle the idea of a problem, but when the label was finally applied, I sat down and cried. To me "Autism" referred to those children who stood in a corner and rocked back and forth. That label was given to my grandson 5 years ago and now I have learned more about the spectrum which includes so many levels of autism or delayed development.

Rationally I understand his problems and realize that he is improving with all of his therapies. He is very high functioning and is mainstreamed in a regular 2nd grade. Emotionally my heart breaks every time I see that he does not communicate with his cousin who is the exact same age, doesn’t interact with his brothers as much as he should and does not have the friends that call and want to play.

When a little boy, his friend, stopped coming for playdates because that boy's mother did not want her son to be friendly with my grandson, it broke my heart. They played beautifully and my grandson was so happy to have a friend. He cried when his mom finally told him that the child would not be coming to his house anymore. This was just another instance of prejudice in our world.

I want so much for his life to be normal. I want him not to struggle with the things in life that should come naturally to him. I want my daughter to be able to relax, and calm down. She is so hyper and constantly on the run with all the children and his therapies. The money that those therapies cost drains their resources so that they cannot go away on much needed vacations.

Autism is now found in one in 166 children. We need to find out what is causing this disease. We need to make everyone aware of early detection. We need to open our arms and accept these children, showing other children that it is alright to play with all children.

More Thoughts on Autism

2006-12-05T08:05:00.000-08:00

*This article was first published in the Autism Support Newsletter "Harmonious Times"

While some autistic individuals are very artistic and do most of their communicating via painting or drawing, others are less drawn to the typical art activities. For these people we have to be a little more creative and brainstorm a little to find interesting and altered ways of taking part in art. Here are a few of the ways I've found to help the reluctant autistic person to delve into art:

1. Some children don't want to get their hands dirty or sticky so they steer clear of painting projects. A fun way to encourage participation in painting is to first provide rubber gloves (like the hospital type) if they prefer and then introduce them to print making. There are some really cool and tempting ways of painting that may win over your reluctant child. Using a train or car as the print maker put some paint in a shallow pan and drive the vehicle through the paint being sure to cover the wheels completely. Now let your child drive the vehicle around on some paper and look at the resulting tracks left by the painted wheels! This is a fun activity that you can keep for later displaying in a frame, window or scrapbook. It's also fun to take a picture of the child doing the project to display with the finished piece. This acts as a reminder and many times a prompt for repeating the activity.

2. Using marbles, golf- balls, ping-pong balls or whiffle balls as the printer cover the bottom of a cake pan with paper. Now dip the balls in paint or simply roll them around in a paint container until they are covered. Pick the ball up with tongs or gloved hands and place them on the paper inside the cake pan. Now have the child slightly tilt the pan or roll the balls using chopsticks or spoons. Look at the patterns made by the rolling balls.

3. Some children are less likely to put pen to paper on a surface that is flat. For a change try hanging large pieces of paper on the wall or get a white-board mounted with dry-erase markers nearby. You can find end-roll newsprint at your local newspaper business at a low price or try looking at thrift stores for unused wallpaper rolls. These make for heavyweight extra long lasting paper for painting, and drawing and just about any other use.

4. Building with blocks or boxes is another form of artistic expression. We keep a camera handy to capture extra-loved or unusual creations. We display them on the art wall or in a booklet we keep by the block supplies. (This also serves as a reminder of play choices in the future)

5. Water play is one of the nearly universal loves of children and even this activity can be turned into art we can keep and remember. You need regular colored construction paper and a bowl of water and a paintbrush. Now, let your child paint designs on the construction paper using the water. The water will darken the paper leaving drips, splashes and handprints -while this will only last a little time it is a lot of fun to do and even more fun to see the image disappear as it evaporates. (This same idea works outside with paintbrushes on the dry sidewalk.)

6. Clay and similar sculpting mediums offer another artistic option that some people really enjoy. Even the tactile-defensive person can find enjoyment in this sculpting idea: Take a lid from a jar or a pie tin or other small shallow container and fill it with air-drying clay. Now provide a variety of interesting items to stick into the clay, creating a mural or mosaic or a 3-dimensional tower of intrigue. Suggested items: plastic gems, ceramic tile chips, pipe cleaners, colored wire, nuts, bolts, paperclips, leaves, sticks, bottle caps or anything that catches the child's interest. Finally, put the creation up until it hardens.

7. Scotch tape and colored electrical tape proves to be a great creative tool for some children, my own son can spend an evening taping designs on paper and sometimes even taping toys together or wrapping chairs in colored tape. I have an activity box devoted to just taping. We have a few pair of scissors, scotch tape, and colored electrical tape and colored paper for his interesting creations.

8. Photography proves pretty interesting and fun for many children. I have found looking at the photos and videotapes that my son creates to be an insightful peak into his perception. A video tape he made last year was full of various images of shadows, lines, mini-blinds and close-ups of peoples faces. It is a unique way of sharing the very different view point of the autistic mind.

Capturing your child's art

My autistic son is reluctant to pick up a pencil, and even more reluctant to try his hand at drawing or painting a picture. The few times he does write or draw something on his own it are nearly always the same thing. Creative expression in a tangible form is hard for some autistic children to come up with but we can show them an appreciation of their endeavors and a way of sharing their creations with the world by doing a few final actions to capture what they really like, whether it be marbles, splashing in water, bubbles or ripping paper to bits. Whatever their unique interests, there is surely a way to share them in an art form with our friends and families and to display them in a proud manner on our walls, windows or good old refrigerators.

To capture our children's unique joys and interests:

Cut 2 equal pieces of clear contact paper and sandwich the creation - you may want to add glitter or colorful crayon shavings or sequins to add pizzazz. After sealing this, cut the edges with zigzag scissors and add a ribbon at the top for a cool window sun-catcher display. You can also do this to make personalized placemats, book-covers, small key chain decorations or special cards for Grandparents. This is one way of sharing your child's efforts, creations and obsessions with loved ones while helping to instill a sense of pride and appreciation in their work and play.

Submitted by: ©Kandie Demarest
Kandie is a homeschooling mother living in the California Bay Area.

TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW - Part 2

2006-11-07T20:53:00.000-08:00

TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW
by Ellen Notbohm

Part 2

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 Emily 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 Michael 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 Ten Things Every Child with Autism Wishes You Knew, a ForeWord 2005 Book of the Year Honorable Mention winner and recipient of iParenting’s 2005 Media Award, and Ten Things Your Student with Autism Wishes You Knew, a 2006 iParenting Media Award recipient. She is 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, and a columnist for Autism Asperger’s Digest and Children’s Voice. For article reprint permission, to learn more or to contact Ellen, please visit www.ellennotbohm.com

Ten things every child with autism wishes you knew Part I

2006-10-08T13:08:00.000-07:00

TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW
by Ellen Notbohm

Part 1

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: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. 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.

© 2005 Ellen Notbohm

Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, a ForeWord 2005 Book of the Year Honorable Mention winner and recipient of iParenting’s 2005 Media Award, and Ten Things Your Student with Autism Wishes You Knew, a 2006 iParenting Media Award recipient. She is 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, and a columnist for Autism Asperger’s Digest and Children’s Voice. For article reprint permission, to learn more or to contact Ellen, please visit www.ellennotbohm.com

Thoughts on Autism Part II

2006-09-17T12:26:00.000-07:00

The journey into the public school system with any child can be a tortuous affair. When you have a special needs child, the journey becomes all that more difficult. After 2+ years of early intervention services to combat his deficiencies, Evan started his Pre-K 3 year in the public school system. He was placed in a classroom by the counselors at Child Find in Palm Beach County who determined that his delay required the full day program.
We were blessed that his teacher, Sheila, was one of the most caring and qualified teachers in her profession. Her many years of experience provided a structured setting full of increasing expectations veiled in a nurturing preschool environment. In addition to his lead teacher, his speech therapist, Lori , worked wonders with him. Between Sheila and Lori, Evan emerged from his two Pre-K years with a much larger vocabulary and the ability to have a short conversation, a skill which had eluded him years past his peers.
One of the biggest skills parents must acquire when navigating the school system is the task of completing the IEP, Individualized Education Plan. Each student has a plan that is, for the most part, written by the teachers outlining what services the student should receive. For the first 2 years, we relied on the knowledge and skills of the faculty to tell us what Evan needed. As we moved toward Kindergarten, I realized that Evan’s best advocate was ME, and that I needed to become as knowledgeable as any autism specialist or teacher.
At the first IEP meeting for Evan’s transition to the Kindergarten year, the school psychologist said the “A” word for the first time…autism. We had known what we were dealing with, but hearing the word for the first time was still like a punch in the stomach. I read everything I could get my hands on…internet, books, articles. Evan was still getting therapy outside of school, so I spoke with his therapist and asked for her help. Together, we wrote goals for Evan that WE wanted to see mastered and worked with the faculty at the school to have him placed in the appropriate classroom.
The elementary school that was chosen was not in our neighborhood zone, but it just happened to be less than a mile down the street from his home school, the school where his older brother was in 2nd grade. We knew Evan was not ready for a typical classroom, but we didn’t want him to be in “special ed” forever. We agreed to start him in the autism cluster classroom, with a clearly defined program of gradually weaning him “into” a mainstream Kindergarten classroom. The plan worked BEAUTIFULLY!!
Evan’s cluster teacher was a very kind, nurturing woman named Susan . She was full of energy and enthusiasm and Evan took to her right away. The first three weeks were spent acclimating to the classroom and then Susan told me that she had found the perfect “typical” classroom teacher for Evan. Kelly was Evan’s typical teacher and we were blessed that she had some experience with autistic children. She was the sweetest woman I have ever met in my life – kind, nurturing, welcoming, patient…the most perfect Kindergarten teacher on the planet. Evan adored her (and even had a little crush on her, I think!) The combination proved to be magic and Evan thrived.
We started with a 20-30 minute “visit” for circle time. Evan was seated right in front of the teacher so he could see and hear everything. As it turns out, this was not the best spot for him. His new lead therapist, K. Kelly, Ph.D., encouraged us to move Evan into the “T” zone for more optimal positioning. The “T” zone is basically in the middle of the group in the 2nd or 3rd row. This positioned him within close sight of the teacher where he could see the board and her, but also gave him the opportunity to observe his peers in front of and to the sides of him. In the front row on the end, he had been constantly turning around to observe his peers, an important activity when students are modeling from their typical counterparts.
As the year progressed, we added more and more time in the typical classroom setting. First it was circle time, then we added one station, then two. By the end of the 1st semester, he was eating lunch with his typical class. He even participated in the holiday show with several hundred other Kindergarteners, something I never thought he would do. He didn’t sing, but he did stay on the stage without having a tantrum and shook his bells while everyone else sand “Jingle Bells”!
By the end of the year, Evan was spending 5 hours of a 6 hour day in the typical classroom, only spending the first 15 minutes and last 45 minutes in the cluster classroom for welcome time and math. The plan had been a success. Evan was going into “regular” 1st grade.

Marcia is the mother of three boys. Evan, her middle child is 7 years old. She is very active in her Autism Society. This information is provided by Burps Bibs and Beyond, a leading provider of baby gifts, burp cloths, and bibs.

Decorating Baby's Room

2006-08-24T07:47:00.000-07:00

Bernadette Upton, of EcoDecor in North Palm Beach, Florida has created a nursery upstairs in the American Lung Associations's Designer Showhouse in West Palm Beach, Florida to show that a lovely room can also be a healthy baby room. She has specialized in environmental design since 1982 and is the show house's co chair.
Here are some of the health and safety tips:
Use only eco-friendly paints such as Benjamin Moore's Eco Spec, Sherwin Williams' Health Spec or ICI Dulux Paints Lifemaster 2000.
Avoid vinyl wallpaper, which can trap moisture and help mold grow. The Plasticizers in the vinyl emit VOCs.
Furnish the Room with recycled solid wood furniture and repaint it. Avoid the "disposable "
stuff made with particleboard that emits VOCs. Cornices should be made of solid wood.
Be careful when selecting a mattress. Some may contain vinyl. She recommends a mattress that is rubber foam lined and insulated with naturally flame retardent wool.
Use natural fabrics. 100% cotton is good.
Replace closet doors with louvered versions that allow air to circulate and prevent moisture and mold from accumulating.
Forget wall to wall carpeting that emit VOCs from the fabric treatments. Wood floors are best.
If you use area rugs make sure they are 100% cotton.
Do not use an air machine with an ionizer or ozone. Use a hepa filter.
Put nothing above the crib that could fall into it. No shelves. No pieces of art.
Do not place the crib near a window.
Look for cordless blinds .She recommends a book by the American Lung Association called A Baby's Breath.