Ten Things Every Child With Autism Wishes You Knew: Part 7; Focus On What I Can Do

As I’ve mentioned before (Six times now) I recently finished reading the book “Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. The full article can be found on-line and the book is available at Amazon.com. Here’s the seventh part from an article by the same name: 

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.

I read a great blog this morning–  “Soccer Moms” February 6th on http://asdmommy.wordpress.com/  Check it out. C’s mom puts it so well!  (Thanks, Darcy!)

We need to pick our battles, work on encouraging and building self esteem in our children (be they autistic or not) and strengthen their skills.  Does it really matter if they score a goal? Does it matter if they are exceptional musicians or mathematicians?

What does matter is that our children are confident and complemented. What does matter is that they are loved for being themselves. What does matter is that they try.

Ten Things Every Child With Autism Wishes You Knew: Part 6– I am Visual

This is the sixth  part of of my series from the book I recently read. It’s Ten Things Every Child With Autism Wishes You Knew  by  Ellen Notbohm. The following is from the article by the same name:

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. We figured out the visual learner several years ago when we stumbled upon the Rock and Learn series– Letters & Letter Sounds and Phonics were our first two. J spent hours watching how the mouth on the video formed the sound and– he learned how to make the sounds! It was the first step toward talking… We did have some disagreement with J’s speech therapist who didn’t think TV was good for him– but, we’re the parents and she didn’t live with us so we won! (She was wonderful and we’d still be with her if we hadn’t moved.)

TV, in my opinion is a tremendous tool for communication and learning.  We’ve always been pretty careful about what he watches– fortunately he isn’t interested in stuff that wouldn’t be good for him.  On the few occasions when we saw behavior changes in him like when he was watching Samurai Jack– we removed it from his repertoire and order was restored.  Also, J turns on the subtitles and reads along with with the movie. I realize that some of it is memorizing but he has learned a lot of “bigger” words as a result of context within a movie’s scene. Anyway– do with this as you will but it is our belief that TV (more specifically movies) have been good for our J.

We just brought back visual schedules. I’m no artist– and J reads well so, I make a to-do list rather than a picture schedule for after school until bedtime.  I attach a sheet of stickers to it so he can mark each item as complete and, if all things are done, he gets two stickers on his chore list (good for a prize on Saturday morning if he has all his stickers and/or bonus stickers. It works really well for J.

We’ve also found that at the early on set of a meltdown– when he isn’t listening anymore and is becoming more and more frustrated we can dissipate the situation with a written not explaining in very simple terms what we are trying to tell him.

Please share some of your tricks– what works for you as far as visual communication? I’d also welcome you to leave comments on the other sections of this series to share what your experience has been and what has worked for you.

Ten Things Every Child With Autism Wishes You Knew: Part 5– Limited Vocabulary

As I’ve mentioned before I just finished reading the book “Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. The full article can be found on-line and the book is available at Amazon.com. Here’s the fifth part from an article by the same name:

 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. Being patient doesn’t mean being complacent. In Autism there are tight ropes to walk on all kinds of issues and increasing vocabulary is certainly one of them.

My son J borrows a lot of words. In another book I’ve recently read, Rulesby Cynthia Lord, the main character has a younger brother with Autism.  She understands that he has a lot of rules and she helps him remember and abide by those rules.  One that really hit home with me is “If you don’t have the words you need, borrow someone else’s.” Technically– in therapist speak– it’s called Echolalia. While it’s important to find your own voice– your own words. Effective communication can occur by borrowing other people’s (movies, books, songs) words. 

In our house there is a lot of movie quoting. My husband and I both work to keep up with the movie du jour so that we can fill in any blanks left by what J tells us.  He works hard to participate in conversations and other social settings.  He understands that he is expected to be a part of the group and he works to do so. He also has come a long way in appropriately using movie talk.

A few weeks ago we had dinner with my parents and J broke out one of the jokes he has recently learned: “What lies at the bottom of the ocean and shakes?”– A Nervous Wreck. He got a great response.  Everybody laughed so he told it again; we laughed again. By the third time it wasn’t going so well so my dad jumped in and told a joke and got J switched over to his short list of “knock, knock jokes.”

It’s so important to encourage positive social interactions and meaningful communication. Sometimes we focus on one, sometimes the other. In social settings we work to help him feel good about taking chances– confident enough to try.  My parents raised me to be independent in both thought and action; we’re doing the same for J, so fitting in isn’t the issue– relationships, comfort, self esteem is what matters.

When J was first working on spoken language we demanded that he use the word. If he didn’t know it we provided it to him and he had to repeat it. Then, we started adding on– Crackers. Want crackers. Want crackers please. Want Club crackers please. I want Club crackers please. Can I have Club crackers please– thank you. This didn’t happen in weeks– really about a year– and, with lots of meltdowns!  But we got through it and, he’s better off for the work he put in.

Frustration over lack of vocabulary can lead to huge, horrible meltdowns so it’s important avoid them in social settings. But, it’s also important to slowly and consistently push the limits– just a little… just enough. You know your child, you know what takes things too far and you learn how to avoid allowing things to get out of control. Trust your instincts and be patient with your child’s limited vocabulary.

Also– do not forget that Autism is a spectrum.  What works for one child may not work for any other child on the whole spectrum. Trust your instincts.

Ten Things Every Child With Autism Wishes You Knew: Part 4; Literal Thinker

This is the fourth part of of my series from the book I just finished reading. It’s Ten Things Every Child With Autism Wishes You Knew  by  Ellen Notbohm. The following is from the article by the same name:

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 and sarcasm are lost on me. This has been a real stumper for me– and for my parents.  Having grown up overseas, I don’t use a lot of slang in English but, I do joke around a lot. J is into Pirates these days– specifically; The Pirates Who Don’t do Anything.  He’s a little actor, and his primary method of communication is Echolalia– so, when he’s quoting the movie in the voice of Sedgewick, it’s pretty natural for me to call him Sedgewick– he corrects me every-time: “I’m not Sedgewick; I’m J.” His language is literal. It’s important to say what you mean– precisely what you mean. It doesn’t rain cats and dogs; it rains really hard. He isn’t my “Honey Bunny”; He is my favorite guy ever.  He dog isn’t “acting up”; He’s being naughty.

When I realized that J didn’t understand my tone of voice it was a major adjustment for me and I started announcing when I was asking a question.  It’s my habit to get his attention– “Question” (In the inflection of a question– if he doesn’t look at me I tell him to look at me) “J do you want to go to the store with me?” This has been so helpful for us.  He knows when I ask a question– he has to respond and he does.

This is important: When giving instructions you have to be specific. Seriously– this will reduce the number of meltdowns, get results faster and correctly.  Don’t tell him to clean up the mess– tell him to put his toys in his toy box and the dirty clothes to the laundry.

J doesn’t get jokes. The Three Stooges are Funny (physical humor) but “Knock, Knock Jokes” (play on words– an orange is an orange– not “orange you glad I didn’t say banana again..” ) aren’t funny.  He knows that he gets a positive response from telling a joke and so he does it.  His jokes are memorized and have the same inflection as the person/movie/cartoon that taught it to him.  A few nights ago we had dinner with my mom in the nursing home where she is having therapy after hip replacement– Part way through dinner there was a short lull in conversation and J told his best joke; “What lies at the bottom of the ocean and shakes?” (He pauses appropriately, waits for a response.) “A Nervous wreck.”  Everybody laughed– even some of the people at the next table.  So, he told it again, and again…  He didn’t think it was funny but laughed along with everybody else because that’s what he was supposed to do. (NEVER discourage your child from experimenting with social conversation– if he falls into a loop; Help him get out of it. If he uses inappropriate language; steer him toward appropriate language. Do not reprimand your child for trying to participate in the social situation. More about Social Interaction in Part 8.)

Keep promises. Your child needs to be able to believe what you tell him– literally. If you say you are leaving in five minutes: Leave in five minutes.  I’ve quit giving a time-frame because it’s just too hard to keep in a social situation; instead, I tell J what has to be done before we can go. “I need to finish helping grandma with the dishes. When I am done we can go.” Or; “Pack up your toys, Get your coat and give everybody hugs and kisses then we will go” I always make sure he is looking at me when I tell him what needs to be done and, I always keep my promises.

I really do recommend reading this book– it’s been so helpful for us– No meltdowns this week!

Ten Things Every Child With Autism Wishes You Knew; Part 3: Can’t or Won’t

This is the third part of of my series from the book I just finished reading. It’s Ten Things Every Child With Autism Wishes You Knewby  Ellen Notbohm. The following is from the article by the same name:

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Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).  

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.

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How easy it is to forget that our children hear differently than we do! It’s work to communicate with them– but, it’s much more work for them to listen/communicate with us… And, the payoff is worth the walk across the room, the insistence on eye contact, the demand for a response.

Last night J was “off.” He wasn’t in tantrum mode but was extremely disconnected. He laid around, he didn’t want to eat, he didn’t connect with me when I spoke to him. His usual happy, singing, funny self was tired. But, when I tucked him in, took his face in my hands and told him that I love him– he told me that he loves me too.  That’s the pay off. That’s what makes all the work worth the hardship.

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My heart breaks for parents who’s children have never said those words. J was five before he said them… and I still remember like it was today. Don’t give up… Don’t ever give up! Remember– it isn’t that your child won’t– they can’t.

Ten Things Every Child With Autism Wishes You Knew- Part 2; My Sensory Perceptions Are Disordered

Here is part two of a ten part series from the new book I’m reading: Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. The following is an excerpt from the article by the same name:

My sensory perceptions are disordered.  This 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 loud speaker booms today’s special.  Muzak 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’m too nauseous.

 Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated.  The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes 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 sense, and now I can’t even tell where my body is in space. In the book she talks about feeling like you’re always on a roller coaster– fun for three minutes but can you imagine going through your daily routine on a roller coaster? Making coffee alone would be enough to ruin your day…

In light of Sensory Disintegration– I am so proud of my J! He handles the off-kilter-ness of his world so well!  I’d be hideous!!  (And, my husband who moans for hours over a hangnail… yikes! What would he be like?) So, J’s outbursts aren’t rebellion, manipulation or bratty-ness– they are genuine cries for help– “Get me out of here”, “End my suffering!”

There are lots of different manifestations– Hyper-sensitive (Clothes hurt, the washing machine is too loud, the light is too bright…) and Hypo-sensitive (Yearns for deep pressure, louder, brighter, harder). J is Hypo-sensitive. He likes walking barefoot in gravel and loves to wrestle. He also is a recovering headbanger.  Identify what your child is– and work with it…

I believe that J will be a productive part of society and this book– the information in it– is a stepping stone. I highly recommend it to all who live with Autism– parents, teachers, grandparents, ministers, Sunday school teachers, lifeguards at the Y… It is up to us– the guardian’s of these kids to provide the people in their lives with this information.

An article by the same name is available on-line.

Ten Things Every Child With Autism Wishes You Knew– Part 1; I am a Child

I’m reading a new book– Ten Things Every Child With Autism Wishes You Knewby Ellen Notbohm. The following is from her article by the same name:

I am first and foremost a child —  a child with 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)?  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?

In the First Chapter she talks about predispositions we have towards labels.  Last weekend my son got a new Sunday School teacher. She is a lovely older lady who really wants to help J. She sat in on his old teacher’s last class with him and afterwards commented to me that she was really surprised by how well J did. I sang his praises– he’s a great reader, he’s really sweet and funny, etc. After reading the first chapter of this new book it occurs to me that she had a set of stereotypes she was anticipating she’d have to deal with.  (Bless her willingness to teach him anyway!) Because of her willingness to tackle this class and her predisposed notions, she will be able to learn from him. He will make her life richer.

I know that I sometimes clarify– “you know J is autistic”– I don’t introduce him as autistic but I do use it as a crutch to explain why he is how he is.  I need to give him more credit and remember that he is first and foremost a child– a georgeous, funny, sweet child!  I am truly blessed by Autism– strange, huh? J is who he is because of Autism and I am so lucky to be his mom!

I certainly don’t mean to be a Pollyanna– there are challenges– REAL challenges but, I wouldn’t trade him in… He is working hard to overcome his challenges, he tries– he’s a good boy who has to deal with things that I can’t relate to and in-spite of it; he is cheerful and persistent.  My son will overcome his speech and social issues. He will find a place where he will be a productive member of society. He will– and, I’ll help him.