Grandmother has a favorite… and it’s not my son

My mother in law’s behavior toward my son changed when he was diagnosed with autism 10 years ago…  I’ve tried for years to just ignore it… I’ve tried to pretend that it doesn’t matter and for a long time that worked. 5 years ago another grandchild was born and now it’s all about Charlie.

In an attempt to laugh it off we started a “Charlie Jar” where we deposit $.25 every time she mentions him and that had been filling up quite nicely until she quit calling or returning calls a couple of months ago. She’s still posting old lady nonsense on Facebook so we know she’s alive… and she recently let it slip on FB that she’s spending the summer with Charlie (We figured that was worth a whole $1 in the jar since it’s in writing… ) so I guess that explains the communication blackout.

My son doesn’t want to see her. He hasn’t seen her in over 2 years and she hasn’t called him in about 10… I don’t blame him for not wanting to see her… She obviously doesn’t want a relationship with him.  I’m done.

Can I unfriend her now?

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.)

Grandparents and Autism– “You’re old”

My little guy is a great reader and his grandma is a great listener. A couple of nights ago J was reading her a story when he paused, took grandma’s hand in his, studied it and said “You’re old.” He pointed out her wrinkles and looked up at her face. She showed him her “old age spots” and compared his 8 year old hand to hers. She has wrinkles, he doesn’t. She has spots, he doesn’t.

J loves his grandmother and she loves him. And, as J tells me so often: “And that’s all that really matters.”

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.

Grandparents and Autism: A Mother’s Perspective

My parents retired close to us so they could help with J. That really was their primary reason for moving from sunny Northeastern Brasil to gloomy Northeastern Ohio.

Two hip replacements later I think they will be helping quite a bit in the near future.  My mother just had surgery and is in a nursing home recovering and doing physical therapy so I’m trying to help my dad keep his sanity. We had planned– for two weeks– to go see the new Veggie Tales movie; The Pirates Who Don’t Do Anything, tonight.  J was counting down the days! I made my Dad’s favorite dinner and the plan was in motion. J came home from school talking about it– he knew what time we were going and had his (medicated) water and fruit snacks tucked into his coat. It was a go!

Fifteen minutes before my dad arrived I went looking for J. He was in bed, with his jammies on and announced that he was tired and wanted to stay at “J’s House”. Ok… I don’t know what changed but we took it in stride and played Scrabble instead. My dad was really cool with it– he was never this flexible when I was growing up!

The only constant with Autism is that it’s not predictable.

 The diagnosis– Autism– was a crushing blow to my husband and me. My parents didn’t see him day to day.  They couldn’t understand beyond the stereotype. That’s changed now– my parents are reading up on Temple Grandin and learning about J’s idiosyncrasies. They know that Autism doesn’t mean “Rainman”.

Autism conjures images to grandparents that parents don’t see. Perhaps because the definition has broadened in the past couple of decades I didn’t grow up with the same images that my parents did. It must be really hard for someone who pictures “Rainman”– or catatonia– to believe in significant progress, verbalization, being a functioning adult.

My parents celebrate victories at least as much as we do– The first time my son chattered all through Church my mom was so happy she cried and told everyone on the way out that “a year ago he couldn’t talk!” (My mother doesn’t cry.)

My son’s grandparents contribute so much to his life– they read to him– listen to him read, they ask him questions and have the patience to wait– however long it takes– for an answer.  My mom even made him pancakes for Thanksgiving! They are a real part of J’s progress.

The next generation– one who has an incidence of 1 in 166 with Autism– won’t have the same images that my generation has.  Imagine growing up in a time when everybody knows somebody with Autism? Will the next generation understand that the Autism Spectrum has such a wide range that there is no real stereotype?

I hope the next generation is kind, educated and anti-stereotypes. I hope J will someday be a good grandfather and will be able to tell his grand-kids about my dad.