Pop Tarts and Social Skills: Foodie Tales from the Land of Autism

Knock. Knock.

Who’s there?

Ivan.

Ivan Who?

Ivan working on the railroad!

Pop Tarts are a main staple for J. His class has breakfast together every morning and try as I might to change his menu we always end up with Pop Tarts… They have Pop Tarts with jokes and trivia questions now– what a great social interaction tool for my little guy!  Every morning he tells a new joke and gets the desired response so he brings back the jokes from previous days and his classmates.

J likes white food– almost exclusively. He likes yogurt but it has to be the Trix brand. He likes string cheese but won’t even try other white cheeses… it’s a challenge.

A couple of weeks ago he stayed over with my parents and asked for spaghetti with butter. We don’t know where he got that idea since it’s not something we eat at home. My mom decided to make pancakes instead since he will always eat those but I tried spaghetti and butter a few days later and the response was a very adamant “I’d rather die!” (I choked back the laughter as best as I could…) ”Great sentence but I don’t think it’ll kill you!”)

Anything can be used to benefit social and verbal skills if you look for it… so, I’d rather J not be hooked on sugar with white flour but, at least they give him a jumping off point for a social interaction.

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.

“I Want A Pajama Party!” Autism and Friendship

Friendship is one of those doesn’t-come-easily things for autistic kids. So when J told me this morning as he was getting ready for school that DJ is sick and won’t be at school. I was both surprised by his relaying this information as well as, frankly, J caring.  When he followed it up with “I want a pajama party with DJ and Alex” I was floored!

While I realize that having a pajama party with three little boys who all have some sort of issue will be a challenge– will take a lot of planning and will likely not be an all night party but, YEAH!!

This is the first time that J has asked for friends to come over besides his 12 year old cousin who he practically worships. Sam is the coolest! He’s a big kid with a great heart, a lot of compassion and even more patience.  We take Sam on vacation with us and he comes to visit each summer but, their primary contact is by phone since Sam lives 4 states away.

I’m off to plan a pajama party and celebrate this victory!

Tweener Book Adresses Disabilities

Rules

by Cynthia Lord

Deals with Autism, wheelchairs and alternative communication methods from the perspective of a 12 year old girl who has a brother with Autism and a friendship with a boy she meets at the OT’s office. It explores the feelings of a young girl at an age when fitting in is the most important thing in the world. Her brother embarrasses her. Her new friend is only for the OT’s office. Her conflict is a pretty classic. What you want vs. what’s cool… And, the resolution is great– pretty realistic and certainly compassionate.

I originally picked this up thinking it would be good for J’s 12 year old boy cousin to understand him.  It’s not. It might be good for a tweener girl but, not for a tweener boy. I’m glad I read it– and, believe it would be good for parents to understand how kids feel about their Autistic sibs.

About the author (from the dust jacket): Cynthia Lord is the mother of two children, one of whom has autism. She says “I wrote Rules to explore some of my own questions about living with someone who sees the world so differently than I do, but also to show a full experience of family life with a child with autism: the happy moments, the heartbreaking ones and ones that make me laugh.”  Lord is a former teacher, behavioral specialist, and bookseller. She lives with her husband and their children in Maine. Rules is her first novel. Visit her at www.cynthialord.com

Rules is published by Scholastic and is a Newberry Honor Book.

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.

Diagnosis: Autism

J was two when we had the annual family reunion at our home. Cousins were everywhere. The “Men-Folk” built a play fort. There was noise, commotion, food everywhere and, the inevitable conflict.  It was a typical family reunion.

 It was crazy busy for my mom and I who were the primary cooks, cleaners and peace-makers. My husband and I shared duty with everyone else in J’s care for the long weekend. He was content. He was dry. He was fed. We didn’t notice that he wasn’t really playing with the other kids. We didn’t notice that he wasn’t really interacting with the adults. But, they noticed.

A couple of weeks after the family left and the house was back to it’s normal state of disarray my brother called. He hemmed and hawed a little and finally said “there’s something wrong with J and you need to get it checked out.”  Talk about a lightning bolt! I was furious– how dare he say there was something wrong with my perfect child?!

He was– and will always be– an only child. He was physically perfect.  A little short but, there’s nothing wrong with that! He was growing just fine. All his fingers and toes were there. He was healthy. He was happy. I was furious with my brother for suggesting there was something wrong!

A few days went by and my brother called again– he apologized for making me mad but, he wasn’t alone in his assessment– the “whole family” thinks something is off.  J didn’t play with the other kids, didn’t respond to direct communication, didn’t look people in the eye, didn’t talk. “You need to have him checked out.”

I called around and found someone from the health department to come to our home and make an assessment– just to prove my brother wrong. The assessment indicated the need for further assessment… what did that mean? He did well– organized the blocks, read, basically– I thought– he was WAY ahead of most kids his age! Who reads at two?! The child was a genius as far as I could tell!

We took him for further assessment and he had eight of ten markers for Autism Spectrum Disorder. Autism? But he didn’t sit in a corner rocking back and forth! There must be a mistake! It was devastating… I cried all the way home… and then I got mad. How dare these people who didn’t know him, who saw him out of his comfort zone, who couldn’t have seen his genius make such a diagnosis?! How dare they?!

My husband was angry. He blamed God. He blamed genetics. He searched for causes and for someone to blame… it was a really rough patch in our marriage while we were working as hard as we could to “cure” J from this injustice that had befallen him– and, us…

J was immediately enrolled in early intervention. He started speech therapy twice a week and group socialization once a week. We worked with him– A LOT!

About a month into speech therapy I made stopped by to talk between her appointments. I sat on the floor of her office and cried. I begged her to tell me that the diagnosis was wrong. I pleaded for her to tell me that he would outgrow it and be ok… she couldn’t. She didn’t lie to me and in hind sight I’m glad she didn’t but it was a horrible time. We greived for who he would have been without Autism.

The stages of grief are real. They come in many forms and people deal with them differently. Mine were a fog. I was manic to fix everything– I read everything I could find, talked to everyone I could and cried whenever I wasn’t working on a “cure”.

Well, I still haven’t found a cure. I’ve found treatments– some have worked well, some have been a failure. J has made tremendous progress and is able to communicate pretty well although he does “borrow a lot of words” from his favorite movies (echolalia). His eye contact has improved tremendously and he loves his cousin S– who according to him is “My best friend”. (Unfortunately, S lives 3 states away so they don’t get to see eachother very often.) He also loves my brother. And so do I.

J is doing really well and I’m hopeful that he will be able to become a happy, independent adult. We still have a lot of work to do and the sacrifices we make are worth it when we see his progress.

If I can leave you with any words of wisdom– if you see something off you must find a way to tell the child’s parents.  Expect them to be angry or hurt but do it. The earlier a child is diagnosed the better it is for progress to be made. Early intervention is crucial. Remember that Autism is a spectrum– every child is different whether they have Autism or not. There are no cookie cutter treatments that work for everyone.

Some of the things that worked for J are “Rock and Learn” videos (available at Amazon.com) — they’re repetitive and will drive you nuts but, they were very helpful for J to learn to talk. (Phonics, Letter Sounds and now he’s doing math and telling time). J is hypo-sensitive and deep pressure is very calming for him– when he was a little younger he told us to “Squeeze” his head– and, he wasn’t talking about a hug– this was a serious smooshing.  Now, he wants to wrestle. We did brushing, blanket rolls, weighted vests and trampolines. They have all helped him. We used to do picture schedules and now just write it out. Different things work for different people.

For signs to watch for visit either Autism Speaks http://www.autismspeaks.org/whatisit/learnsigns.php or the Autism Society of America http://www.autism-society.org/site/PageServer?pagename=about_whatis_characteristics .

So far there is no cure for Autism. There are treatments and great progress can be made.  Many people with Autism live happy independent lives– look up Temple Grandin as a great example;  She has written several books, has a fulfilling career and is able to live independently. Look on YouTube for her seminar.

Become educated. Become opinionated. Become involved.

South Carolina Debate; Still No Mention of Autism

Did I miss something? It was heated. Edwards, Clinton and Obama spent a lot of time on health-care and yet, they did not mention Autism. Statistically 1 in 150 children born today will be diagnosed with Autism and yet it again did not warrant mention in this lively debate.

Does the Autism community need to sponsor a debate in order to make it a national topic?

Norman Rockwell’s History Lessons; Grandparents and Autism

“It was a great day! Wonderful! I am a good boy!” That’s how J summed up our day out. 

He was prepared to go to the Rockwell exhibit.   Now, we know that preparation isn’t always going to pay off… but, the more the merrier!  We had looked at a Rockwell book, talked about what he would see and do so, he had some idea of what to expect.

When we got to the Museum we split up– Dad (the artist) went off to study the paintings while J, Grandpa and Mommy went to see the Saturday Evening Post covers. There was a crowd– we kept J close and focused– lots of questions for him: “What do you see in this picture?” “Look at this– what does it say?” Then, we transitioned into telling him about the history of the picture– “This is Grandpa’s birthday month– July, 1935″ “This is Grandma’s birthday month– What does it say?” And, grandpa told him– in just a couple of sentences– what was happening in the world then.”

Grandpa told him about Pearl Harbor and how Uncle Tommy (whose picture is on our mantle) had been called up from leave when the Japanese attacked. We told him about World War I, Rosie the Riveter, John Kennedy and Civil Rights. Snippets of history… short explanations, memorable stories.

Norman Rockwell brings back a lot of memories to my parents generation– and, even a few to mine. For J it’s all new. His memories are of us telling him our memories. That’s not unlike other children.

When you look for a learning experience you will find them. When you know how to communicate– you will.  J’s Grandpa understands that he is a literal thinker. Flowery words defeat the purpose. He can communicate with J so that he is understood and, so that their bond is strengthened.

Let me tell you about my dad; He’s a great guy. An overseas missionary for more than 35 years, compassionate, generous and with a temper. He is a good communicator in two languages and several cultures. He’s an avid reader and loyal to PBS. He’s impatient, set in his ways and spoiled– first by his mother, then by mine. He’s lovable, gives great hugs and has a fantastic laugh. He’s sensitive to the feelings of others and is hurt when he hurts someone else.  He and J are quite a pair!

My dad used to be a little afraid of J. I know– that’s terrible but, it’s true. The meltdowns, the lack of communication and not knowing how to relate to him.  Things have changed. They have a relationship. My dad has learned to go with the flow.  My dad has learned to communicate with J in terms that J understands and J is learning his Grandpa’s history.

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!

Contact the Candidates– Let’s get them talking about Autism!

Let’s get the candidates talking about Autism. If you are reading this you most likely are a family or friend of a family with Autism. With the statistics skyrocketing we have to deal with it now.  Please consider Autism in your candidate choosing process and ask your candidate– or all of them– to start talking about it. 

To make it really easy for you– below are the links for contact pages for the top 10 candidates. Please ask them to start talking about Autism.

Democrats:

John Edwards: http://www.johnedwards.com/about/contact/form/

Barack Obama: http://my.barackobama.com/page/s/contact2

Hillary Clinton: http://www.hillaryclinton.com/help/contact/

Dennis Kucinich: http://www.dennis4president.com/ (I couldn’t find anything beyond newsletter sign up)

Republicans:

John McCain: http://www.johnmccain.com/Contact/

Ron Paul: http://www.ronpaul2008.com/contact/form

Mitt Romney: http://www.mittromney.com/CommentForm

Mike Huckabee: information@explorehuckabee.com  (I couldn’t find a fill out form for him– so, here’s the email address.)