From Simply Robert: Fostering a Better Relationship with Our Meltdowns

The following is an excerpt from a practical and encouraging article a good friend posted yesterday. We have known each other twelve years now. He has been a tremendous source of information and inspiration to me as my husband and I strive to best parent a child (now, a young adult) on the autism spectrum.  As someone on the spectrum himself, he has a specialized perspective on how to navigate this world. As a person of faith, he is kind and compassionate, full of grace. Here, he explains how we might view meltdowns, not only as a negative, but leaning in to them, they might be a coping mechanism.

 

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Parallel Quotes

While I do not want to present any arguments regarding diagnosing historical figures posthumously, or overgeneralize on a topic, or even get hung up in any way on labels, I found some of Tesla’s thoughts intriguing.  As I have mentioned in my last post, I have been reading a biography on Nikola Tesla entitled Tesla: The Life and Times of an Electric Messiah by Nigel Hawthorne.  Several aspects of his work ethic, idiosyncrasies and, in particular, this following quote made it easy for my mind to drift to another scientist, from today, an agriculturist and spokesperson for autism.  Of course, I mean Temple Grandin.  Here, I lay their thoughts, separated by nearly one hundred years, parallel to one another.

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“…nature has given me a vivid imagination which, through incessant exercise and training through the study of scientific subjects, and the verification of theories through experiment, has become very accurate in results, so that I have been able to dispense, to a large extent, with the slow labour, wasteful and expensive processes of practical development the ideas I conceive…

When I turned my thoughts to inventions, I found that I could visualize my conceptions with the greatest facility.  I did not need any models and drawings or experiments, I could do it all in my mind, and I did….When I got an idea, I started right away to build it up in my mind.  I changed the structure, I made improvements, I experimented, and I ran the device in my mind.

It is absolutely the same to me whether I place my turbine in my mind or have it in my shop actually running in my test.  It makes no difference.  The results are the same….I then construct it, and every time my device works as I conceived it would, my experiment comes out exactly as I plan it, and in 20 years there has not been a single, solitary experiment which did not come out exactly as I thought it would.”

-Nikola Tesla on accepting the Edison Medal, New York City on May 18, 1917

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“When I was much younger, I assumed that everybody perceived the world the same way I did, that is, that everybody thought in pictures.  Early in my professional career I got into a heated verbal argument with an engineer at a meat-packing plant when I told him he was stupid.  He had designed a piece of equipment that had obvious flaws to me.  My visual thinking gives me the ability to “test-run” in my head a piece of equipment I’ve designed, just like a virtual reality computer system.  Mistakes can be found prior to construction when I do this.  Now I realize his problem was not stupidity; it was a lack of visual thinking.  It took me years to learn that the majority of people cannot do this, and that visualization skills in some people are almost nonexistent.”

-Temple Grandin in The Way I See It, p. 15

 

Why Atticus Finch could have raised a child on the autism spectrum

DSC_0002Lately I have been spending time within the pages of To Kill a Mockingbird.  It’s not my first time to read the Pulitzer Prize winning novel.  This might be my fourth or fifth.  Between reading the novel for a book club and reading it in preparation to make use of it as a read aloud with A and S early next school year, I am reading for curriculum – for historical setting, thematic elements, symbolism and life lessons- just as much as for narrative enjoyment.  From spending time in quiet reflection adjacent to Atticus and the Mobile Register to racing past the Radley place behind Scout with my jeans rolled up, I have been reflecting on the significance of Harper Lee’s story for myself.

Jem.  Calpurnia.  Mr. Heck Tate.  Maudie Atkins.  Tom Robinson.  Reverend Sykes.  Mrs. Dubose.  Lively characters with much to say to us even today.  While it is widely recognized that Atticus Finch was a good father doing his reticent best in solitary and difficult times, I have also come to a more personal conclusion: Atticus Finch could have successfully raised a child with Asperger’s.

Aunt Alexandra’s vision of my deportment involved playing with small stoves, tea sets, and wearing the Add-a-Pearl necklace she gave me when I was born; furthermore, I should be a ray of sunshine in my father’s lonely life.  I suggested that one could be a ray of sunshine in pants just as well, but Aunty said that one had to behave like a sunbeam, that I was born good but had grown progressively worse every year.  She hurt my feelings and set my teeth permanently on edge, but when I asked Atticus about it, he said there were already enough sunbeams in the family and to go on about my business, he didn’t mind me much the way I was.

To Kill a Mockingbird, chapter 9, p. 89

The beauty of Atticus’ statement to Scout is in his acceptance of her.  No only does this make me smile for its understating qualities but also for Aunt Alexandra’s usage of the word “sunbeam.”  Atticus’ connotation of the word seems substantively different.  Not only did Atticus “not mind” her differences, but he did the hard work as a parent to help her stand out against her society insomuch as she was standing on her own two feet.  He didn’t mind her wearing overalls.  He didn’t mind her being addressed as Scout, instead of her given name Jean Louise.  He didn’t mind her running around half wild with an awkward neighbor boy and no girls for friends.  He didn’t mind her swearing, not really, because he understood it was for attention and want of expression (and incidentally a last-ditch ploy to avoid school).  These were unequivocal traits which made Scout stand out as an oddity in polite, accepted Maycomb society.

How is all this important to me?  Because he wears the baseball cap 24/7.  Giggles uncontrollably at things no one else finds even slightly amusing.  Uses archaic phrases.  Recites stories from memory that at times have little to do with the flow of conversation.  Interjects tidbits of trivia on baseball, presidents, car models, world countries, etc. apropos to goodness knows what.  Why should I find this difficult or offensive?  Like Atticus I am learning to accept.  Whereas he fought the battle of Aunt Alexandra and Maycomb County, I fight my own internal battle.  Hard pressed between how I feel others may perceive him and how I should just let him be.  My own quirky sunbeam.

“First of all,” he said, “if you can learn a simple trick, Scout, you’ll get along a lot better with all kinds of folks.  You never really understand a person until you consider things from his point of view – ”

“Sir?”

“-until you climb into his skin and walk around in it.”

chapter 3, p. 36

Atticus teaches Scout and Jem to take stock of another’s perspective multiple times in the novel.  He offers this advice concerning those he genuinely cares for like Miss Caroline or Mr. Cunningham, and for those he does not, such as Bob Ewell.  We need more empathy, more walking around in each other’s skin, more children who can say, “I don’t agree with you, but I understand why you think that way.”  More people who are strong enough to wield grace and patience.  Not condoning immoral behavior but a loving spirit and empathy for someone else’s struggle.

Atticus had said it was the polite thing to talk to people about what they were interested in, not about what you were interested in.

chapter 15, p. 164

Empathy and theory of mind can be difficult for people on the spectrum.  Difficult, but not impossible.

Atticus pushed my head under his chin.  “It’s not time to worry yet,” he said.  “I never thought Jem’d be the one to lose his head over this – thought I’d have more trouble with you.”

chapter 11, p. 113

As a member of our bookclub noted, Atticus never blatantly tells the children when it is time to worry.  He teaches by example through a forbearance that supersedes worry and despair.  Through these words he gives credence to the seriousness of the situation, but allows them to know that someone is sharing their concern.  He is listening.

Isn’t this what we all desire, for someone to say, “Yes, I hear you are scared.  Yes, those are legitimate worries.  Let’s deal with this together.”?  Unfortunately, fear and anxiety can be the primary emotion for people on the spectrum.  Atticus might have been able to successfully parent his way through these daily struggles with an Aspie son or daughter.

Certainly I am not proposing that Jem or Scout were intended to have Asperger’s.  They were precocious, yet neuro-typical.  Nor am I proposing that acceptanceempathy and anxiety are things exclusively children with Asperger’s need to learn, but as I have often heard expressed: People with Asperger’s struggle with the same issues everyone else does, only more so.

Summer, and he watched his children’s heart break.  Autumn again, and Boo’s children needed him.

Atticus was right.  One time he said you never really know a man until you stand in his shoes and walk around in them.  Just standing on the Radley porch was enough.

chapter 31, p. 294

Grace, Theology and Autism

Inaccurate theology.  Sometimes it is a conscious choice.  There were times when intellectually I knew my feelings didn’t make sense nor were they based on my understanding of God through Scripture, but something in me felt I had been jinxed with a child on the autism spectrum as a direct result of my past experience with it.  If someone had asked me if this were true, or even if I had asked myself, I might have laughed and said, “Of course not.”   And intellectually I never really believed this, but some latent fear lay brooding, feigning a dormant state, some primordial superstition hid behind a stronger faith that perhaps it was true.  Perhaps if my mother-in-law had never been a special needs preschool teacher with the Department of Defense….Perhaps if I had not known so many people with autism…Perhaps if I had not read so many articles….

My husband and I saw the signs.  We knew what to look for, and we had diagnosed our son ourselves years before we felt the necessity to seek a formal, medical diagnosis.  It was as if all these people and situations were highly contagious and I had now become infected.  If I had not been so well informed on autism, then I never would have given birth to someone on the spectrum.  There.  Fleshed out in a sentence – cause and effect –  in all its explicitness, it looks utterly ridiculous.  And yet…there are times when we operate this way, aren’t there?  If I pray a certain prayer, use special words, God will answer me….If I fall asleep praying, tomorrow will be ok… If I ignore a pain in my chest, it will go away… If I stop thinking about something bad, it will just disappear…. If I think about happy things, I won’t have problems… Have you ever felt yourself reverting back to humanity’s ancient cultural myths?  Out of desperation, helplessness?  The visceral takes over not because we are not intelligent enough, or faithful enough, but simply out of fear.  It is the knee-jerk reaction of humanity to hedge our bets.

Praise be to God for his grace and understanding.  I thank God that he does not always take my every random thought and fear too seriously.  I am thankful that he allows me from time to time to try something on for size, even at my most ridiculous, and gently helps me disrobe and discard the illogical and theologically unsound thoughts.  He provides grace to dress my thinking with something finer, something more beautiful and clearly from him.  An accurate vision, a heavenly help.  Grace in the providential stream of our lives.

Because, of course, the fact is that God did not bless me with a son with Asperger’s because I had accumulated enough autism run-ins, but rather he blessed me with the gift of preparation.  Slowly, over time I was afforded opportunities to learn about people with differences.  My mother-in-law was a huge asset particularly when my son was smaller and guided me through tips on occupational therapy and sensory sensitivities.  As an undergraduate, years before children, my husband and I were employed by Group Living in the tiny college town of Arkadelphia, Arkansas.  (Laugh if you want; the towns exists.)  It is an amazing organization which allows developmentally or physically diabled people to be a vital part of their community.  Group homes are offered for those needing more attentive care.  Regular visits and life-skills training are provided for  those who are able to live independently.  Group Living also runs and operates a very popular breakfast and lunch place called The Honeycomb, serving quiches, sandwiches, salads and American fare.  The Beehive also employs Group Living clients in the second-hand shop similar to  the nation-wide Goodwill stores.  Many of the clients we worked with had autism.  I remember attending as an undergrad a training session on autism.  There, in the mid-90s, I first heard of Temple Grandin and her squeeze box.  I am so thankful for these moments.  And for the wonderful people I worked with there.

One of these people was also my neighbor.  Sammy Landers and his caretaker lived in the apartment below my husband and me.  He was moody, enjoyed being alone, and spoke very little.  Yet he was one of my first encounters with autism.  Sammy is an artist and is featured in this wonderful blog post from last year.  I have one of his pieces which was presented to us as we left Arkadelphia.  It currently hangs above my four-year-old son’s bookcase in his bedroom closet.  Another touch of grace- this one in purple marker.

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Honestly, the issues my son struggles with are not severe, just daily.  He is easily frustrated, gets caught up in rigid thinking, becomes easily obsessed with a topic, but also has phenomenal memory, is exceptionally perceptive about others’ feelings, and has a deep longing to be helpful.  Grace has not only given me a greater appreciation for the preparation I have received over the years, but also for my son himself.  What would I change about him if I could?  What would you change about anyone whom you love?  And here is another theological inaccuracy – by God’s grace, my son will be fine.  Perhaps all these careful lessons are not to help shape him, but me.

Curriculum: an Asperger’s Reading List

Wouldn’t it be wonderful if we could purchase a full curriculum to teach us what it is like to be on the Autism spectrum, and to have  reference material to help us troubleshoot those sticky, daily problems?  As a mom with a twelve-year-old son (EEK!  He just had a birthday and is now so proud to sit in the front seat.) who was diagnosed with Asperger’s, I would love if this were a reality.  The truth is, however, one does not exist.  Just like there does not seem to be a book to teach me to stop being so impatient.  And yet, there are several helpful books to help ease the burden, make things a little clearer, and to provide inspiration.  The following list is hardly comprehensive.  In fact, it is only just the beginning.  I have listed, however, the books or materials we currently possess or have used.  Here I am primarily including books for younger readers.  Most of these are geared toward individuals  6-16 years of age.   These are the ones which have made a difference TO US.  I hope you find something useful, hopeful, inspiring in at least one of these tools.

blogphotos 001 All Cats Have Asperger Syndrome by Kathy Hoopman – If you know a parent of a child on the spectrum, it is very likely they have a particular fondness for this book.  In fact, I know many parents who have used this exact book to help guide their first conversation with their child about what it means to have Asperger’s.  It was the perfect choice for us as A has always loved cats.  He finally got his own two Christmases ago.  And I strongly suspect that Mittens is indeed on the spectrum!

The first signs of Asperger Syndrome are usually picked up very young.  An Asperger Child looks at the world in his own unique way.  He likes to be near those he loves, but doesn’t want them to hold him, preferring squishy places to a hug.

Each page is sweetly accompanied by a photo of an adorable kitten.  The words are poignant enough, yet stated simply to enable it to be used with a wide variety of ages.  While not every statement may be true for your special one, it provides wonderful openings for constant dialogue about what makes us all unique.  You may also be interested in the author’s title All Dogs Have ADHD.

blogphotos 004Different Like Me: My  book of autism heroes by Jennifer Elder, illustrated by Marc Thomas and Jennifer Elder – A loves biographies, so this seemed a natural choice for him.  I do not remember how I first discovered this title, but it has been interesting beyond the topic of autism.  It is comprised of twenty one-page biographies of famous people who have excelled in various fields, such as science, mathematics, music, art and computers.  Some of the choices are speculative as they predate the 1940s knowledge of autism and Asperger’s.  For example, Isaac Newton and Lewis Carroll share space with Andy Warhol and Dian Fosey.  Autism spectrum disorders are not mentioned, perse, within the bios, but they do provide an understanding of their unique challenges and victories.  A good read for 8-12 years old.

blogphotos 002Temple Grandin: How the Girl Who Loved Cows Embraced Autism and Changed the World by Sy Montgomery- Full of personal photos of unarguably the best-known person with autism, this biography covers Temple Grandin’s early years, school and college life, as well as her current work with the cattle industry, and autism awareness.  This fabulous read, probably geared for a pre-teen or teenage audience, ends with the appendix “Temple’s Advice for Kids on the Spectrum.”

There is a tremendous wealth of insight through any of her books.

 

blogphotos 003Can I Tell You About Asperger Sydrome? by Jude Welton, illustrated by Jane Telford – This brief book was specifically written to help other children grow in their understanding of what it means for their friend to have Asperger’s.  Each section is introduced as a running dialogue between “Adam” and a friend.  It covers topics like sensory issues, confusion over social cues, and problems dealing with change.

 

 

 

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The Social Express by The Language Express,Inc. Initially intended as a curriculum for classroom or home usage, The Social Express is now available as a convenient app for your 7-15 year old.  Join Zack, Emma and her dog Sunny as they navigate their way through town, across friendships  and social situations.  This social skills learning program introduces “hidden social keys” like body language and emotional vocabulary.  Emma and Zack frequently consult their DPS (digital problem solver) to decide how to respond in difficult social situations.  In this way, your child is constantly interacting with the characters, helping them to make good choices.  While this program is already fairly basic for A, he still occasionally enjoys revisiting it.  They are always good reminders.

THE BIBLE– Ok, of course the Holy Writ does not specifically mention any type of Autism Spectrum Disorder.  However, there are so many verses on love and tolerance within its pages, that I think it should apply, whether talking about someone on the spectrum learning the world about them, or the “neuro-typical” in understanding and appreciating the spectrummy brain.  Just listen:

Bear with each other and forgive whatever grievances you may have against one another.  Forgive as the Lord forgave you.  And over all these virtues put on love, which binds them all together in perfect unity.

Colossians 3:13-14

 

Be completely humble and gentle; be patient, bearing with one another in love.

Ephesians 4:2

 

 

 

 

When Vexillology Takes Center Stage

It is not often that A’s obsessive interests and fascination with minutiae become germane enough to share even with his brothers.  The upcoming Olympics provides him with a wonderful opportunity not only to display his flag collection in his room, but also to pass on this great love to his youngest brother.

Here is a sampling of some of A’s flags which he has displayed using a variety of mason jars and plastic containers on his bookshelf.

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Supposedly, vexillology, the study of flags and their symbolic meanings, can be a popular hobby with people on the autism spectrum.  Perhaps this is due to repetitive patterns and the need (or ability) to pay close attention to details.  A is astonishingly adept at quickly differentiating  France’s flag from Russia’s, and Indonesia’s from Poland’s.  Or even trickier, the flag of Chad from the flag of Romania.  Look them up.  They are maddeningly similar.  Yet, A instantaneously recognizes the country.  He seems to be passing this love and talent on to my very neuro-typical G.  Yesterday, while looking at some random photos from London’s 2012 flag ceremony, G instantly exclaims, pointing to a partially furled flag, “Look!  There’s Brazil’s flag, and there’s Syria’s!”  We have not made any kind of systematic study of flags.  I suspect he has been under the tutelage of his oldest brother more than I even expected.

Although this was not in connection with the Olympics, last year A and S created flags for our new home school.  Each reflects their own personality and interests.  This is is the NASA-inspired one S painted.  We named our school SAG House.

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A was still influenced by his love for Taiwan as the underdog.  He complains every Olympics that they are not permitted to carry their own flag.  And very quietly I type and admit he dressed up as Taiwan last year for Halloween.  (No political comments, please.)

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My attempts to get G to participate in flag creation were somewhat succesful.  That kid is just not a crafter.  I found this cute and very simple Olympic flag craft on East Coast Creative blog.  Click here to see how her son’s project turned out.  G spent all of five minutes on his, but he did enjoy it, moderately.

For those who might be more enthusiastic, it was a great way to talk about circles, continents (namely, the five involved in the Olympic games), and even a refresher on how to mix primary colors to create green, purple, orange, etc.

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After watching the flag ceremony clips and creating our own flags, we had to host a ceremony ourselves.  After all, an outdoor mini-Olympics may not really happen with all these Arctic temperatures in the Mid West this year.  Our wide staircase provided the perfect indoor venue for showcasing their spectacular colors.

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Of course, we will all be fixed to the television set on Febraury 6th for the 2014 Opening Ceremony in Sochi, Russia.  Unless, it is on too late in the evening, then we will just escort G on up to bed.

One more thing: A has asked me to include a flag quiz.

1.  Whose flag is NOT rectangular?

2.  Which national flag is the most ornate?

3.  Which country readopted their five-cross flag back in 2004?

4.  Which country’s flag previously featured a large ‘R’ in the center?

Are there any budding vexillologists out there?  May you enjoy the time as your passion takes center stage.

Autism AMA: Headphones

Several years ago when my husband and I decided to move to the Indianapolis area we began to pray for God to prepare us to meet the people here, and, in kind, to prepare people here for us to meet. I have felt for many years that Robert and his family are one such answer to our prayers. We have relied heavily on him as a first-hand source of information on autism. He has provided us with an unspeakable amount of comfort and hope as we parent A. Until recently he has taught music education at a local elementary school. The following is a post on the subject of sensory sensitivities that many on the spectrum deal with.