The Night the Lights Went Out

Greg arrived home from work to a cold house today.  It got colder when I couldn’t explain to him why the shredder wasn’t working.  He simply screamed and rammed that piece of paper into the blades and when nothing happened, he screamed again.  “There is no electricity!” I shouted.  He tried again to shred his work papers to no avail.  This continued, a scream and a futile attempt to get the shredder working, (he even took it apart!), until I convinced him by cutting up the work papers myself and stuffing them into the trash bin below the shredder.  Transitions are difficult at best for those on the autism spectrum, and Greg refused to accept that his Friday routine was disrupted and not able to be fixed despite his repeated command for me to “Fix it!”

He usually comes home from work after a week of boxing, labeling, sorting and skills training with the expectation that his calendar will be crossed off and all will be completed according to the schedule in his mind and on his MagnaDoodle. When high winds kept him from his regular schedule, he just couldn’t cope.  In his mind, things should always work.  

Jay called while en route to the gym with bad news.  The lights were out there, also.  Evidently, there would be no gym for Greg today either.  The treadmills were down and out.  “Where’s Jay?” He repeatedly asked, and despite my patient answer of, “Dad is on his way home.  The gym is closed because of the wind and there is no electricity,” Greg just could not understand what was happening.   “Where’s Dad?” “Where’s Dad?”  “Where IS Dad?” I asked myself.   I wanted Dad to jump on a flying carpet and get home instantaneously, but instead, had to supply creative answers to still the potentially exploding cannon that Greg could be when his routine is disrupted.

When darkness crept down over the woods, and the trees began to disappear in the night sky, I lit candles and turned on all of the battery-operated candles and the gas fireplace.  Greg started to calm down.  He always liked the dark but that didn’t stop him from saying, “Afraid.  It’s dark.  Scared.”  Thankfully I had downloaded two videos onto his I Pad, so he was able to sit with me in the kitchen and do his word search book by candlelight and watch the two videos until Jay returned home.  By that time it was only 5:45, and I knew we were just beginning the long night. 

With no promise of lights, I gave Greg cold pizza for dinner along with his bottle of water which we had been unable to take to the gym.  Apparently when one is on well water, the water stops when the electricity stops?  Now I know why people who live some distance from the nearest convenience store stock up on water in case of emergencies.  

I was shocked when Greg ate that pizza cold!  In the past, he’s never varied from his eating routine either.  Did he finally understand that since there was no electricity, there was no warm food?  I lit more candles, but Greg kept blowing them out!  He has done that since his first birthday party when he discovered cause and effect and loved watching the light disappear and the smoke appear.  By the time complete darkness fell upon us, Greg realized that he needed a flashlight to do his word searches and he tolerated my grand gesture of holding it while he worked.  Afterward, he played with the flashlight himself while Jay and I tried to get warm in the living room.  

No more complaints came from Greg.  In fact, he might have viewed the entire evening as an adventure!  Calmness prevailed.  No sound of music.  No sound of the television.  No sound of Jay and me arguing about how to handle the outage since we’d both accepted that it was going to be a long one.  There was peace in our household.  

I ate cold pasta and drank lots of wine, fortifying for a long night.  The wine helped to warm me up.  At 7 P. M. Greg, conceding that there would be no electricity, said ”Ready for bed.”  Again, he was very flexible in using a candle to go upstairs, in using bottled water to brush his teeth and in switching back to winter jammies from spring ones to keep him warm in a very cold house.  His air purifier remained idle, and for the first time ever, he did not gesture toward it to get me to turn it on for him.  Could Greg have figured out that this particular necessity relied on electricity?  Sometimes he shows us that he understands.  I thought we would have another fight, but Greg passed on that one and hopped into bed.

On this Night the Lights Went Out who could have predicted which of the many changes to his routine would set him off.  A shredder, of all things.  To go with the flow and work in the dark, eat cold pizza and initiate bedtime all by himself were the unexpected joys that befell our household this night.  When those lights came back on, I almost regretted it until I heard Greg shout, “Clock!”  His alarm clock needed to be set to the new time so Greg’s routine could start fresh on Saturday.  His need for routine returned with the click of his clock when the electricity came back.

There is some bad that comes with raising a special child, but the good shows up and all is forgotten.  Until the next storm....

P. S.  Thanks, Shannon!  Your interest in reading about Greg inspired this blog.  Whenever I take a hiatus, I realize that so many people out there want to know about autism and see how it affects families.  Your smile and encouragement will stick with me for a long time.  I think you must be liked and appreciated in your classroom.

 

 Greg’s lights out activities

Greg’s lights out activities

Watching videos, playing with putty, completing word search book... what do kids do when the power is out and their phone batteries are DEAD?  They go to bed!

We Want So Much

 “So Much” is a term best reserved for a parent whose child cannot tell her/him what he wants to eat.  Last evening, I had to guess how many leftover pigs in the blanket Greg wanted for dinner.  Our “so much” is measured only in terms of the normalcies that most families take for granted.  SO MUCH, because it is a lot, buckets full of a lot to hope that someday our children will ask for what they want.

 “So Much” is reserved for a parent who is her/his child’s best friend.   Greg’s dad, Jay, is Greg’s best friend, not age-appropriate, but best, nonetheless.  Jay and I have no regrets about that; like all parents we wish he could communicate and have typical friendships to enrich his life, but father/son is wonderful.  “So Much” because what will happen to Greg when his best friend Dad pre-deceases him and he is left behind?

So much” is best reserved for a parent who cannot hear the joys and sorrows of our children with autism because they cannot share them with more than a scream or a smile or a gesture. We want that verbal communication so much.

When I was watching CNBC a few weeks ago and saw that Roche Pharmaceuticalss has a revolutionary new autism drug awaiting the next stage of development, I was hopeful again.  Again?  AGAIN.  Over the years, I have jumped on many a bandwagon of treatments for Greg.  Families remember the B vitamin craze as well as the DMG which we were told would change our lives.  Families also remember having their child’s poop analyzed for deficiencies, excesses and all manner of abnormalities.  I remember back in the day when they were shooting a med right into the children’s abdomen with the hope of ridding the body of harmful toxins!  (We didn’t try that one, but we considered it!)  These drugs were ineffective in treating Greg’s challenges.

However, we are in a new era of discovery and the brain studies done by various universities and other researchers offer a glimpse into what causes autism.  This time, I am truly hopeful.  If you can get to the cause, surely you can find a solution?  Roche is going to do it for our family as well as for myriad other families who hope for increased speech and social relationships in our autistic children.

Greg has amassed 30 plus years of untold stories.  He has lived with us, resided in a group home, and is now back with us.  Surely there are stories to tell.  How did he feel when he saw the Grand Canyon?  He seemed bored.  Maybe it was just a big hole in the ground to him?  In his bathroom, one sees a picture of him sitting on the wall overlooking Niagara Falls.  He is smiling.  Why did he smile when he saw that beauty and power?  How about belief in Santa Claus?  Does he really believe a man in a red suit flies around the sky, delivering presents to children all over the world at Christmas time only?  To see him rip into his presents, one would think so.  When Bert and Ernie entertain him, are they talking directly to him?  He is engrossed in their conversations, yet cannot produce fluent speech himself.

Message to Roche:  We are counting on you.  We don’t care how much this drug costs.  We recognize the amount of research, testing and trials you have to go through to perfect this drug.  Perfect it.  We will buy it.   Other families will buy it.  Life is short, and Greg has a lot to tell us.  

 

 Greg’s family

Greg’s family

Greg knows we are his family.  I believe that in my heart.  How nice it would be to hear those words again.  I haven’t heard them since losing Greg in Park City, Lancaster, PA.  When we found him, he uncharacteristically and shockingly said, “You are my family.”

 As Greg walked down the stairs from his bedroom, he paused to look at these pictures, smiled and walked down to the kitchen.  I wonder what he thought of the new display.  Here’s to Roche helping me find out...

It Takes Guts

 ....to do anything in public with a child as involved with autism as ours.  As I plan a memory-making trip to Iceland for Greg, I wonder if it is the right time.  We had two outbursts this week just in our ordinary lives, and the potential for crisis looms whenever we take Greg out of his routine.  We tell time by his routine....

First crisis?  It was unavoidable.  Greg came home from work on Tuesday, laid out his clothing for Wednesday and we left for the gym.  About ten minutes from home, he started to repeat, “Closet closed.”  Now if I were smarter, I would have turned around, driven home and checked out the problem with his closet.  Instead, I was trying to get to the gym to stick to our schedule and thought Greg would work through his concern.  In hindsight, I‘d known that I might be creating a situation when I responded to Greg’s fixation about his work shirt not being in the hamper by sending him back upstairs to see that I had, indeed, put the shirt in the laundry basket.  He took his concern to new heights, uncertain about whether or not to close the closet door.

Jay and I were together in mind and spirit that day.  As Greg was preparing for a melt down, Jay talked with him.  I remembered that I had a mild tranquilizer in my bag and ran to my locker. Jay got on the treadmill next to Greg and walked and waited until the pill began to reduce Greg’s stress.  By keeping up a conversation and joking with Greg, Jay was able to diffuse the situation.

I forgot that Greg has anxiety when asked to do something independently.  Now, in Iceland, if we remember that, we should be OK.  

Order to self:  Do NOT ask Greg to do anything independently.

Who am I kidding?  As if Greg’s OCD issues, his anxiety issues and his need for routine weren’t enough to keep us from taking the trip of a lifetime, the reader must address the parents’ shortcomings.  Simply stated, we don’t communicate!  If we can’t navigate the simple skill of communication around here, how can we ever navigate a volcano, geyser, lagoon and other sights and sounds of a foreign country!?  Our trips, to date, have been Niagara Falls, the Grand Canyon, Disney World and the beach.  All in the United States where English is spoken.  We know the restaurants here and can deal with whatever happens.  In a hotel, we can complain to the higher ups that our son was promised a room with a falls view and hope for a new room.  This happened, of course, at Niagara Falls.  We can see when a tantrum is coming and get out of Dodge, if necessary.  However, Iceland?  It’’s a foreign country.  Where can we hide?  We can’t just go home in a crisis.  We must FLY!  Are we crazy?

Note to self:  Study escape routes in case something goes wrong in Iceland. 

Back to Communication.  As Jay ages, he is losing his hearing and his concentration.  As I age, I am more impatient and less likely to repeat myself more than 3 times about the same topic if Jay says, “Huh?”.  I also have a short memory.  I’d forgotten that whoever Greg goes with to any location, he needs to stay in that vehicle until the trip is completed.  So when we left the gym yesterday and I yelled to Jay that Greg wanted to go home in his car, (we had two cars at the gym), I waited for an answer, and got none. Greg was already following Jay!  Greg looked confused, especially when I hesitated.  Doom.  I figured Greg had gotten into Jay’s car, but it was dark and the lot was full, and I lost sight of him as he maneuvered his way through the lot.  There began my frantic drive through the streets of Lebanon until I saw Jay’s car, but saw no sign of Greg’s hat or head sticking up at shotgun!  I called and called by phone, with no answer.  I even beeped my horn repeatedly, hoping Jay would hear it.  

Could Jay have accidentally left Greg in the parking lot?  I panicked and drove back to the gym, expecting to hear Greg screaming in the parking lot because we’d left him behind.  I hoped that someone who knew autism would be with him.

I did not see Greg.  I drove up and down all lanes of the lot and looked inside Planet Fitness.  I checked my phone to see if Jay had returned my calls and was frantic to see that he had not, because, remember, he is deaf and doesn’t hear his new Samsung that I made him buy for emergencies.  A harrowing trip home, for sure.  What I didn’t know was that Greg was torturing Jay with his relentless questioning, “Where’s Martha?”  Greg, once he makes a decision, then regrets it and perseverates about it.  My anxiety plus Jay’s deafness does not make great communication.  

Reminder to self:   Always require the listener to offer an answer.  Double check each and every communication.

How will we manage in Iceland?  We have calming meds for Greg, but they take time to work.  As families of children with autism know and experience daily, disaster awaits, often catching a family unprepared to deal with the ensuing tantrums, screams and other irrational behaviors.  

We cannot stay home and live in a bubble, however, never experiencing life’s journeys for Greg.  Greg deserves to have memories of some of the wonders of the world, and it is our job to make that happen.  So, we will pull ourselves together, organize the trip the best we can and go.  Hopefully the Icelanders know autism like we know autism and welcome us with open arms.  If not, I’ll hand out cards introducing them to this blog.

Years ago, I received invaluable advice from a worker in Oregon when I took Greg out there for a hearing treatment.  I asked her if I should take Greg sightseeing during our free afternoon even though he was having lots of stress and her reply?  “Martha, he is going to have stress back in your hotel, also, so you might as well go, enjoy Oregon’s waterfalls, forests and snow and live your life!”  Sage advice which we have taken to heart.  Just need to remind ourselves once in awhile to get out there and live so we don’t become reclusive with our special child.  

The world is changing.  People with special needs are more welcome everywhere.  Positive comments are far more common now than negative ones.  Once people recognize that our son is special, they are on board.  Yes, it takes guts to journey into the unknown.   But the unknown sometimes brings a new look at why we are here on this earth, to enjoy the gift and see the sights.  

Reminder to self:  Book a nonstop flight.  Greg likes to get where he is going without having a layover! 

 

Image from Safari:  Nomadic Matt, 2014

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We have guts, and with luck, will see this!

How to Teach your Autistic Child in ONE Easy Lesson

Seriously?  Is that possible?  After thirty-one years of watching our Greg struggle to learn and seeing the most surprising results of years of work, I say, ”Yes.”  This blog will show you one lesson that worked with our son.

There are one or two basic educational concepts that I learned while at Millersville State College back in the early 70s which have served me well in my teaching career and in my role as a parent of a child with autism.  Unbeknownst to me at the time, my teaching years at Milton Hershey School resulted in untold benefits as they provided instruction in best practices at myriad workshops as well as a practice ground to implement these workshop skills with my students, and now, with my son.  People never stop learning.  This, I have seen firsthand in my 34 years of teaching, and so, we continue to work daily with our son who is now 31 years of age.  

Recently I created a book, and Greg chooses to read it almost every day.  My educational goals for Greg are cleverly housed in a scrapbook/storybook, and he is not aware that I have created this book especially for him with education in mind.  We have learned to catch that teachable moment and repeat the lesson daily in order to effect change in our son who is academically challenged in many different arenas of life.

In this instructional blog, I will share enough basics to get you started in creating a lesson/book for your child.  First, choose one or two essential goals for your child.  Ours were to teach Greg his new address and to get him to stop bowling gutter balls whenever the shot is too difficult.  Most children need some reinforcement in a deficit area, and by housing that instruction in a new context, you just might be able to change a behavior that is challenging or offer instruction in an area of need.  

Next, decide on your medium or method of instruction.  Greg was an artist as a child, and we saved as many of his drawings as possible.  (He burned most in our fireplace since one of his fixations was watching fire, but we managed to hide just enough in boxes to pull from to use in the scrapbook.) I then wrote a story in which I had Greg’s favorite characters, Sesame Street guys and Garfield, teach Greg his address.  This week, I asked Greg to tell me where he lives, and with a short prompt with my fingers to show him the house number, I was gratified to have him recite our new address!  He still struggles with the town’s name, but if he got lost, a policeman could put the street name into a data base and maybe come up with our town and find the two frantic parents, Jay and me.

The next Saturday bowling date, we were surprised to see Greg trying to knock down those pins instead of electing to send the ball into the gutter whenever he had a split or other difficult roll.  After reading his new, birthday present scrapbook, he took the written instruction, ”No gutter balls” and carried that lesson with him.  In other words, he internalized it.  I can now prompt Greg at bowling by reminding him of his book:  Ernie and Bert don’t make gutter balls” or by prompting him exactly like the book, “No gutter balls.”

You have to keep finding ways to teach a child until he masters a concept, and if basic instruction in a classroom does not work, then use the visual, auditory, hands on (kinesthetic) or combination of any recognized instructional methods to push home that difficult concept.  Study your child.  Think about how he/she learns.  In Greg’s case, his auditory processing is extremely delayed, and we observed over the years that he learned best by watching other children or studying a videotape or reading a book.  The scrapbook offers visual instruction while “hiding” a few educational concepts, a subliminal lesson of sorts.

 I used Greg’s art along with photographs of items around our house that I needed to make the story complete.  With alphabet letters purchased at Michaels, sticky tape that I used to secure the art and a stack of background paper offered at all craft stores, I spent one day creating, and it was well worth the time.  It is impossible to share all the pages of the scrapbook, but a few are posted below to give you an idea of what worked with Greg.

In review:

1). Choose your goals, one or two at most.  2).  Decide on your medium or method of instruction.  3).  House the goals simply and directly without overwhelming the child.  4).  Personalize the lesson.  5).  Repeat the lesson daily (even multiple times a day) until there is mastery.  6).  Return to the basic lesson several days or weeks later to see if it was truly internalized.  If not, repeat!

 

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Guy Smiley teaches Greg his address.  

Greg drew his Sesame Street guys obsessively from ages 4 to about 12.  It was at that time that OCD set in, and drawing became too painful for him.  

 

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Bert seems to be saying, “No gutter ball, Greg.”

 

 

 Bert and Ernie are “real” to Greg! 

Bert and Ernie are “real” to Greg! 

This is the first page of Greg’s book.  If Bert and Ernie preach it, it must be so!

 Personalize it!   

Personalize it!   

Remind your child of personal stories or other memories of his/her childhood.  If you don’t have art work, use photographs or sketch some stick figures yourself! 

 

 Photograph supports the text.  

Photograph supports the text.  

For a child with autism, the visual must correspond with the text or confusion might result. 

 Garfield carries the dreaded raisins.... 

Garfield carries the dreaded raisins.... 

Humor brings home the message that Greg is a very picky eater.  He ate raisins as a toddler, then gave them up forever when one got stuck in his teeth! 

 

 Kermit is a girl? 

Kermit is a girl? 

Greg depicted Kermit as a female, possibly because he saw this image in a video.  I repeated this humor again in the story by suggesting that maybe Kermit in a skirt is his grandmother.  Greg laughs whenever we read these pages.

I could not include all 20 pages in this blog, but these 7 give you an idea of the content and layout of the book.  My next goal?  Greg needs to learn how to make choices.  He gets stuck and hovers back and forth.  A lofty goal....we’ll see just how powerful Super Grover is! 

Our fears

All parents have fears, especially for our offspring after our death. How will our children cope without us?  Will they be financially sound?  Will our grandchildren be healthy?  How can John manage his affairs without us?  What about Sally?  Will she find the right man?   

Parents of special children have fears, also.  Our fears differ.  Who will help Greg wash his hands after he uses the bathroom?  Who will make sure his air purifier is clean when the white light blinks?  When he has a doctor appointment, who will interpret Greg's gestures?  As you can see, we are more specific, for it has been that day to day task that helps us make sense out of our lives.  Our children need us in ways that are incalculable.

After life in the group home turned neglectful and negative, we brought Greg home and found the ideal place to live in the Woodsy House.  Greg acknowledges his acceptance of his new life here by shaking his head affirmatively whenever we ask him, "Greg, do you want to live in the Woodsy House forever?"  We can make that happen for him with a program called "Lifesharing".  We have begun to calculate how much money Greg will need, how to set up the house for a caregiver, how to make it easy for our other son and nephew to manage Greg's affairs, how to keep him here even when the snow is two feet deep (we bought the granddaddy of snow blowers) and when the winds knock down a tree (we have already cut down the trees that might fall).  We cannot ask a favor, that someone take Greg into their home after our death.  His behaviors can be pretty difficult to handle at times.  And so,  you see our dilemma.  We want to plan for anything that could happen.  Sadly, nobody can plan for all eventualities, yet that does not deter us.  

Our biggest fear?  How do we find a caregiver who will respect Greg for his individuality, who will heat up his chicken and cut it perfectly for him, who will tuck him in with a hug each night and who can work our granddaddy of a snowblower). This is the intangible fear, the fear that Greg will ask, "Where's Dad" every day or the fear that Greg will be unhappy without us, or that he might act out and have to be institutionalized.  We could not bear that.

My brother just passed at age 56.  He had a blood infection along with his mental disorder, and his heart gave out.  My mother passed at age 70 of early onset Parkinson's likely brought on by her heavy reliance on lithium and a malady termed brain toxicity.  Our favorite bowler just passed.  Timmy had Down Syndrome with all of its joys and one huge sorrow, his early death.  I am beginning to see a pattern.  I look around me and do not see many elderly people with mental or neurological or emotional disorders.  Where are they? 

This week I had dinner with a friend who has a special child.  She mentioned that our children tend to die younger than the norm.  Hearing those words shook me up but I did not dwell on them until the next day.   Now I have a new fear. 

  

 

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In Greg's birthday present/scrapbook, I combined his art work with photographs to teach Greg about our new home and to reinforce the idea that he has a different address now.  Look at my next blog to see some of the pages and learn about the process of creating for and instructing the visual learner.

Going Out to Dinner with your Special Adult, A Comedic Adventure

Putty?  Check! 

Word Search book?  Check! 

Pen?  Check! 

6:00 Med?  Check! 

Tissues?  Check! 

Wallet and book?  Check!  (The book is a little book that Greg always carries with him.  There is blank paper inside.  It is a non essential to us, but not to Greg.)

Oops!  Forgot to bring ear buds to plug out crying baby noise.   Will come back to haunt us later. 

We successfully exit our beach rental to walk to the nearby restaurant.  Shit!  (How quickly oops turns to shit.)  Forgot to cross off the day's schedule on the Magna Doodle.  Back to apartment.  Cross off day's activities.  Leave for restaurant again. 

Families who want to venture out with their adult children who have autism need a check list, or, they need to decide if DINNER is really necessary.  After a day at the beach, this is a no brainer.  The family will be hungry. 

After checking the checklist to validate all check marks, the family wisely chooses a restaurant on the busy July 4th week-end at a beach in New Jersey.  Don't even dare to ask us why we choose the busiest week of the summer for vacation.  We suffer from temporary/permanent madness caused by dealing daily with the irrational nature of autism.  Easy answer, but false.  We had a wedding to attend and decided to make a long vacation week out of it.

No city shall be named, nor shall we include the restaurant of choice in case you recognize us as the family that tried to silence our hysterical son.  

At said restaurant, there cannot be a line outside.   We don't wait very well.  There cannot be temperatures of over 90 degrees.  We hate heat.  There cannot be screaming babies nearby.  That hurts our ears.  "Why the 'we'?"  you ask.  After all, the entire family is not autistic.  "We" is plural because our family has to make choices that ordinary folk simply cannot fathom.  "We" are the ones who are sorely disappointed if the meal is stressful on everyone around us.   "We" sometimes have to exit out a side door and slink away when our son's stressful behaviors exacerbate to the point of "it is impossible to remain here."   

Yes. We also dodge a bullet by choosing a table next to an infant rather than a fussing five-year-old.  We hope to cajole Greg out of his fear of the crying baby noise by pulling out everything we brought to entertain him.  Naturally.

Remember this?  We forgot the ear buds!   

Choosing food is always a source of contention.  A kaiser roll with sesame seeds?  Greg refuses to eat it. "No seeds!"  A burger too rare?  Greg refuses to eat it.  Mushy fries?  Again, Greg repeats, "Mom will eat it."  Coke?  Difficult to mess that up.  We know, however, that Coke makes Greg burp, and burp loudly, a funny/bad habit that he learned in high school that still entertains him highly.  We say, "Greg, say 'excuse me'."  He dutifully repeats, "Excuse me."  Now, if that family next to us, the family that heard the belch above all other din, does not realize that we are special by this point of the meal, then perhaps they do not reside on this planet.  We Are Everywhere!

Jay and I roll our eyes at each other in a knowing way when all foods show up perfectly prepared.  At the exact moment when we realize everything is perfect, we are actually going to finish our meal, Greg laughs!  Out loud.  Hysterically.  He throws in a few "perfect" comments, as if he is telling himself a joke and continues his laughter.  To cover the hysteria as best we can, we pretend that we told a humdinger of a joke and laugh with him.  

I never have to pay the check.  Greg and I exit quickly, leaving Jay to handle all finalities.  Once outside, we are free.  Free to look forward to the remainder of the week and all other meals out. 

If you are asking yourselves, "Why don't you stay home and cook your meals while on vacation?" then you likely have no sense of adventure.  Or, you have too much common sense.  Or, you don't live on the edge.  We, on the other hand, are adventurous, we have little common sense and we live on the edge.    

It's normal to go out to dinner.  We pretend, like other families with special children, to be normal if just for that one, very special moment in life. 

 

 

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Safety: from the perspective of a parent of a special needs young adult

Even more important than "productive and happy" as a goal for our special children is our goal of keeping them safe.   I relate as both the parent of a normal child, whose safety I think about daily, and as the parent of a special child, my son, Greg, whose safety is more frequently on my mind (hourly if not more).  I worry that his van driver will have an accident and Greg won't be able to tell the ambulance driver what hurts.  I worry that Greg will wake up in a hospital, unable to comprehend what is happening around him.  Another worry is that Greg might be waiting for me at home, alone, as I sit in a ditch somewhere, unable to reach 911 or call a family member or friend to go to him.  Accidents are possible at Greg's work site, but not likely to be as serious.  That worry is less because the workers at CIT, Greg's work site, are well-trained and very protective of our special adult children.  

So when our "government", both state and federal, decided to make changes to the work environment of our special needs population, concerns about Greg's SAFETY became paramount.  As a rule, I am a fighter for justice, but where have I been for the past 40 years?  I protested increases in college costs back in the revolutionary early 70s, yet I haven't appeared at our state capital in more than forty years?!  Shame on me.  

In summary, the Department of Human Services originally proposed changes to programming for our special adult workers to promote work in the community.  I am not arguing against that lofty ideal.  In a utopian society where there is no bullying, no violence, complete equality and kind, benevolent people everywhere, participation in regular employment is a wonderful idea.  However, the way the new rules were to be written included incremental steps of participation in real jobs of 25%, followed by 50 and 75%, all to be accomplished by 2019.  What were they thinking?  Safeguards out the window.  Choice?  None!  Training and transportation?  Vague.  I was truly scared for Greg's future as a productive worker at his workshop.  How can my son, a young man with little to no conversational ability, a pacifist through and through who doesn't know how to fight back, a kind soul who does what he is told without question, thrive much less survive?  I vote for more safety and less worry, as I am sure many of the hundreds of parents who showed up at an informational meeting a few months ago, vote.  

As a result of our active, vociferous participation in our government, we accomplished change that will protect our children by keeping them safe and productive in workshops where most thrive under the watchful eyes of supervisors and aides.  Our first accomplishment, the new proposal, states:  "Provider will offer commmunity integration for no less than 25% of program time and up to the amount people choose effective September 2018.  This is not a requirement imposed on individuals."  In part 2 of the same proposal:  "The person and their team will explore the person's interests/preferences and develop a plan for meaningful community engagement that will support the person's lifelong learning and growth, including the type of community activities and the frequency."  The concept of 25%, 50% and 75% has been dropped from the proposal.  This round goes to our children.  They now have a choice.

I was especially concerned about the "exception" part of the proposal.  Surely Greg would be one of the exceptions?  But what if someone out there deemed him capable of working out in public based on simple observation of his productivity at work.  He is very productive!  However, given his nearly nonverbal state, he would never be able to advocate for himself like a normal individual at work.  

Besides the concept of exceptions, if the majority of special adults switched to work within their community, did that mean Greg's company would close?  The government seemed to be switching its resources to a whole new concept of employment.  In my mind, this would leave little funding to keep a sheltered workshop open.    

Now, I am reassured by our second accomplishment, the new proposal which states: "Exceptions for medical, behavioral health, or conditions that affect the person's ability to participate or impacts the person's health and safety.  The determination will be made by the person's team. There is no additional review."  With this new proposal, round two goes to our children, also.  Workshops must remain open.

Of course, there is much more to this original document, pages and pages of changes to the status quo which, when whittled down to the most important, pale by comparison to the two included here.  If you ask Greg's van driver, she will tell you about a daily occurrence that occurs as they approach CIT. Greg breaks into his happy chant because he is ecstatic to arrive at work each day.  

If you know autism like we do, you realize that there is not a cookie cutter solution for each of our children. Whereas many can work in public, others, like Greg, need our protection.  Nothing is guaranteed, but for sure, I worry less about Greg during his work day than I worry about him at any other time.  

When my friend and fellow parent of a special child, Patsy Krasevic, asked me if I was going to Monday's committee hearing at the Capitol building, I was not sure what I could accomplish.  I'd already written many letters to my congressmen.  I'd made phone calls as well.  Now, I will never hesitate again when it comes to participating positively in governmental issues.  I was there.  I saw the actions taken by a caring group of congressmen.  I saw bus loads of like-minded parents, educators and special individuals campaigning for basic human rights.  By getting involved, we were able to change opinions which resulted in a new proposal.  I not only observed our government work, but I also felt like I was heard.  That is the definition of democracy.  A political party did not win this time.  Our children won.

(For more information about the renewal of the Office of Developmental Program's Consolidated and Person/Family Directed support waivers, see their website.) 

 

 

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Several hundred advocates participated in a gathering in the Capitol building of Harrisburg to promote the welfare of special needs adults. 

 

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If you tell children they have rights, you have to be prepared when they exercise those same rights.  It was quite a sight to witness. 

"A Nation exists to serve its citizens."

 

 

I didn't say this, but I could have because I believe it.  I have to give credit to Trump's inauguration speech writers.  In our role as American citizens, we pay taxes, fight in wars (my uncles and father), serve jury duty and vote.  We obey laws, contribute to charities and support public education, to name just a few of the ways we participate actively in a cooperative democracy.

 

Blog readers: please note!  The state of Pennsylvania has new ideas on what is best for people who are disabled.  The Pennsylvania Office of Developmental Programs (ODP) has proposed many changes which will directly affect our family members who have state funding known as waiver funding.  The leaders may believe that they are serving our citizens, but they are not.

 

In this case, only parents and families of adults and children with special needs are experiencing this potential injustice.  It is due to my need to spread information about autism that I find myself sharing information this evening with you normal folk out there.  I have always believed that a nation is judged by many things, in particular, by how it treats its citizens who are disabled. Here's what is new in the world of "special".  There is much more to the proposal than this, so I recommend that you study and make your own decision about the changes especially if you have a family member, a friend or a neighbor who is special. 

 

To be fair, the ODP has made many proposals, a whole book full, and some are good.  However, here is the change that has parents all over PA writing letters to their congressmen, meeting at work sites, talking amongst ourselves and worrying every minute about the future of our children.  By January 1, 2018, our special children will have to work in a regular environment 25% of the week.  It gets progressively more inclusive until, by 1/1/2019, disabled citizens will have to spend 75% of their work week in a regular work community. 

 

You are probably thinking, "That sounds great.  Why is she complaining?"  Wouldn't it be good for our souls to see thousands of special people working alongside us? 

 

Yes, indeed it would.  It is my fervent dream that all who can work find their place in society.  However, the very concept of giving our special children more choice in how they want to spend their days has been removed by this proposed change which mandates how they will spend their days.  Think about this.  My son wants to go to work.  His work site is known as the S. Wilson Pollock Center for Industrial Training, and he has worked there for ten years.  He thrives in a protected environment where he labels, sorts and boxes products that have come from companies all over America. 

 

Greg is fortunate to receive waiver funding, PA state-sponsored funding which makes it possible for him to work in this protected environment and have qualified people drive him to his work site.  Without it, Greg would, in all likelihood, stay home all day.  An alternative is adult day care which serves many who are disabled, but someone like Greg who is capable of working needs a special set-up.  He cannot live independently, nor are his behaviors good enough for him to work in the regular workplace. 

 

Yes, I could take him out into the community during the day and be his aide while he greets people at Walmart, a real job.  Yes, I could keep him safe at a shredding company.  (He LOVES to shred! Yikes!) Yes, I could work side by side with him at a laundry, another of his interests.  But what adult that you know wants to spend all day side by side with his mother?

 

I am retired from teaching.  What about the families who are not?  How can the state afford to hire one on one aides for every special citizen who wants to work?  How can the state check each and every disabled citizen to decide who is capable of work and who is not?  We are not cookie cutters, making perfect cookies every time.  We sometimes produce a cookie that is unique with unique needs and unique challenges.  We are the dough.  You might try to shape us with your altruistic solutions as to what to do with special needs people, but sometimes we need to reshape ourselves, the "dough," and think how it might function outside the cookie box.

 

Greg would definitely be excused from this proposed change due to his behaviors, but if his work site closes due to lack of participants and funding, where does that leave him?  It's not funny, but I've been working on my baking skills just in case Greg has to stay home with me and start up a baking business.  I bake cakes for my former team teachers at Milton Hershey School, using them as Guinea pigs.  Uh oh.  Now they know I have an ulterior motive.  I'm NOT the generous person they may have thought I was.  I'm simply practicing on them for Greg's next job!  

 

The system is not broken.  Leave it alone.  My son's autism necessitates his employment in a special place.  It is unsafe for him to be alone, unsupervised for even five minutes.  He cannot speak up for himself nor can he fight off bullies which we all encounter in our jobs.  I implore the ODP to consider each and every citizen's needs and to look closely at the characteristics that might make a special person an unlikely candidate for regular employment even if there is qualified supervision.

 

How we treat our special people indicates a lot about us as a society.  We need to offer these wonderful people options, not limit their options by mandating how they can use their funding.  Like Donald Trump said today, "A nation exists to serve its citizens."  Let's serve our special needs citizens by giving them the best services anywhere in the world. 

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After Greg put this on our Christmas tree, he proudly showed it to his dad when Jay got home from work.  CIT is Greg's life.  He needs to work and is proud of his contribution to society. 

Dear 8th Grade Students at Central Dauphin Middle School,

 

I always wanted to share the wonders of foreign language, travel and culture with my students, which I did for 34 years.  I now find myself at a different stage of teaching, not one that I invited into my life, but one that enables me to share, once again.  Today I get just about 40 minutes of your time to help you understand the number 1 childhood disorder.  It starts with a capital A, ironically, and that is where I begin today.

 

I never expected to have a child with autism.  I wasn't even sure what autism was until I saw "Rainman" with Dustin Hoffman in the 1980s.  When I looked at my son Greg, I noticed different characteristics than Hoffman portrayed in his famous movie about a grown-up math whiz who could add long columns of numbers, but who could not add up his change after making a purchase.  My son could do 100 piece jigsaw puzzles by age 1 and sing entire songs, but he could not converse with me.  He knew the way to Sesame Place, but did not know to come inside when it started to rain.  There are so many more examples of odd contradictions.  Naturally, I never thought Greg was autistic because he didn't act like Rainman.  Look for unusual characteristics in your own children someday.  Call an expert if you see them.  (See the list I will share with you.) If your pediatrician is not a source of information, seek out others who might be able to help with the diagnosis.  Advice #1.

 

The obvious question you might pose at the end of this class period is, "Mrs. Squaresky, if you could have a do over, would you hope for a normal child?"  Phew.  I was afraid you would ask me this question.  In another universe, maybe we get a do over, but not here.  We can wish for normal.  That's as far as wishing leads us.  

 

And, yes, I would still take Greg just as he is.  His challenges shaped our lives and made us better people.  On the other hand, I'm not saying I would not pray for normal.  

 

What I want you to know is that all children are special.  Even parents of normal children make mistakes. Believe me when I say that my husband and I made many raising both our boys.  We jump into parenthood with written guidebooks, but little to no experience, and that is an open door to ERROR with a capital E.  We get one chance to do right by our children.  If we screw up, we must be there to pick up the pieces and formulate a new plan.  Listen to your children.  Spend time with them.  Talk to them.  That's a start.

 

We chose inclusion for Greg because he seemed to learn best by watching others.  Given another chance, we would still choose inclusion. Greg showed us that he could handle the challenges of the regular education classroom with the support of his teachers.  Greg made friends.  He learned to read and do math on the calculator, and most importantly, he learned what constitutes acceptable behavior out in the real world.  

 

We did not have Internet in the 1980s.  Look up "autism" and educate yourself.  Make informed decisions with a bit of gut instinct added on.  Don't beat yourself up if you make a mistake.  Instead learn from it.  Make lists, mental or written, and choose the best solution at the time.  Advice #2.

 

I have long lists of advice.  However, I have learned over my many years of teaching not to be preachy.  Students tune out.  Instead, look at my family's challenges and learn.  See Greg's art. Read his story. Recognize that "special" does not mean that a person is incapable of great successes and joys. 

 

Welcome to my world for the next 40 minutes. 

 Special people in our lives: Greg and Caralie, Greg's childhood friend, meet years later to reminisce.... 

Special people in our lives: Greg and Caralie, Greg's childhood friend, meet years later to reminisce.... 

Central Dauphin School District's program of inclusion brought Greg wonderful friendships.  Caralie Foltz Roisum may live half way across the country now, but she found time during her Christmas break to see Greg.  Part of our journey with autism has been about relationships with other special people.

The Toilet

Greg has an obsession with flushing toilets.  When my long time friend, Pat Derk, called yesterday to recommend water saver toilets, I realized that she had figured out a solution.  To deal with Greg's shenanigans, we needed these friendly suggestions since we were stuck on the obvious one of keeping a plumber's phone number handy.

Now that we have decided to move into the next phase of life with Greg's return from the group home (the group home had become disastrous), we realized we needed to look at our old age.  What challenges do we face now that we have decided to keep Greg with us?  What do we need to do to prepare for Greg to transition to a time when we are no longer here to support him?  Most of all, how can we relax and refresh to reduce stress in our lives so we CAN live longer?

Moving to a wooded lot is a start.  I am indebted to Harry, a high school friend who, at one of our periodic McCaskey high school get togethers, described his wooded lot near State College.  He shared stories of the warm moments getting away from the hectic work day, and how necessary it was for everyone to be able to do this.  Jay and I will have to learn how to stay home when it snows, to savor the moment and to sit back and chill with Greg.  We need many more family moments with my sister and brother-in-law such as I had this summer when the three of us went out together for lunch or with Adam and his girlfriend, Erika, like we have at the beach.  New prospects for family events like cross country skiing, hiking or swimming in Mount Gretna's lake await us.  It is widely accepted that stress contributes to illness which contributes to aging which....well, you know....and we need to embark on our new journey quickly.

If you read A Spot on the Wall, you know that one of Greg's earliest obsessions was flushing toilets.  That obsession has continued, resulting in many a night when I hear Greg crawl out of bed, walk into his bathroom, flush, crawl out of bed, walk into the bathroom, flush, and so on, perhaps twenty times a night!  So when Jay and our realtor, Dwight Kopp, looked up at the living room ceiling during their walk through, that wet spot was no surprise.  We added "call the plumber" to the ever-growing list of repair calls I would have to make to help us get ready to sell.  The heater/air conditioner, the hot water heater, the dryer, the tree guy, the granite installer, and, now, the toilet.  

We placed a trash can on the toilet and directed Greg, "Greg, you can't use this toilet.  It's broken.  You need to use Mom's toilet until it's fixed."  The shocker was that he seemed to respect this and did not get up for his all-night flushes during that time period.  He did not flush our toilet all night, just his own?  We never could figure out the way Greg's mind worked.  

The plumber came, he saw and he conquered.  That evening, Greg went upstairs to use his own bathroom.  All of a sudden I heard, "Fix it!" coming from the top of the staircase.  I knew something had gone wrong, again.  I called for Jay.  Jay ran upstairs, bent over the toilet and yelled at it!  I couldn't get out of him what was wrong, but I envisioned a flood of water stains covering my living room ceiling below, thus preventing us from being ready for the first showings of the house.

After 41 years with Jay, I know that leaving him to rant and rave is the best solution, so I went downstairs with Greg and waited.  I yelled up the steps, "Do you want to me to call back the plumber?" Jay accomplished a quick fix which seemed to pacify him, and he yelled back, "NO!"  He was mumbling something about the handle not working the way it used to and the water and the excessive flushing.  "Stress.  I am stressed."  (I'd become accustomed to hearing that from Jay ever since we decided to put the house up for sale.  I know you are saying to yourselves, "But why move if you have more stress getting ready to move than the woodsy house would lessen?"). Didn't say this was a rational move....just necessary,

"What should we do about Greg's peeing tonight?"  I asked Jay if we should put the trash can back on top of the toilet, and he replied, "There will be no peeing in this house tonight." 

"What?"

"There will be no peeing in this house tonight," Jay repeated. I looked at Greg and laughed, telling him that he would have to go outside and pee on a tree.  He got up and headed to the door.   

Fooled me.  I thought he was going straight outside, but he turned right, into the kitchen, where he sat, waiting for his bedtime snack.   

Greg has a sense of humor.  He knows Jay and I lose our minds from his antics because, often, I hear him mumbling "angry, Dad is angry" under his breath.  With autism and its OCD, Greg cannot stop himself even though he knows it makes us angry.  Thankfully, we laugh a lot in this household, and that should counter the stressful moments just enough to keep us alive another day.

Water saver toilets?  Smart solution.  Pat assures me that they are not too expensive or difficult to install.  They might just make their way into our woodsy retirement home.  Greg will never stop flushing.  

Still, there are plenty of trees outside the new home to pee on.  We must think positively.

 The toilet

The toilet

Could we have found a solution to the flushing obsession?  After the final visit to the bathroom each evening, we could place a trash can on top of every toilet in our house for the rest of our lives.  Problem solved. 

The Kitchen Cart

If you read my book, you might remember the chapter entitled, "The Ceiling Fan".  In that chapter, Jay and I tried to install a ceiling fan in an old house in Narberth, and after four hours of profanity, sweat and bodily damage caused by swinging fan blades, we accomplished it.  What we did not suspect?  We also brought profanity into the lives of our two young children.  Greg is the absorbent sponge who picked up a few choice words and used them in school when he was bored one day.  

Twenty-five years ago, we had no patience.  With two young children, one autistic, and no free time, we did not have four hours to sweat out a fan installation.  Now, we still have no patience, but Greg is back home from the group home.  We are ever cognizant of his outbursts now, especially those which we cause when we are annoyed with each other, thus we try not to use angry tones when discussing.  Greg cowers, shakes, bites his fingers and says, "Angry" when we argue, or even when we banter back and forth, which is often enough.  We have to convince him that we are not angry, and then continue our conversation with quiet voices and softer tones.

Jay and I are both domineering types.  We both like to be right and we both like to be the boss.  That makes do-it-yourself projects that require cooperation next to impossible.

When I went to Joss and Main on the I Pad and read one customer's review that we could put together a kitchen cart in two hours, I imagined the worst, but knew we needed more counter space in our kitchen to avoid our ever present space issue.  With a granite top and three shelves and a drawer, the cart was ideal.  Another customer had written that it took two people to put together the cart.  Uh, oh. I was not deterred.  I optimistically forged ahead!

Now, if I were Phil Paulsen, my friend Carol's handy husband who can build train sets, or Denny B, my friend Linda's husband who has a degree in civil engineering and who can build anything, or even my nephew Brian Hofmann who expertly learned dry walling and painting skills and who can put together electronics by reading the instructions, I'd have that cart together in less than an hour.  However, this is Jay and me.  We do not read instructions from front to back because we are too impatient.  We do not have a sense of looking at a picture and creating a piece of furniture that looks like the picture.  Finally, we do not do well without verbal instructions from someone who teaches us each step from start to finish.  Did I mention that we don't listen to each other?  Although Jay did not excel in electrical shop and metal shop in high school, he made a foot stool and a book shelf in wood shop which I still have to this day, and so I thought we could put together a simple cart.

When we installed the wine rack backward, we did not go back to undo all of our work to fix it.  We thought we would just face the wine bottles forward without a little dip in the wood for the neck of the bottle.  Naturally, we had no idea that two minuscule holes located elsewhere on the back of one of the  pieces, practically invisible to the human eye, would come back later in the instructions to be important.

What was different this time was that we didn't yell at each other during the creation.  Instead, we laughed.  Whenever our voice level escalated, I spelled T - O - N - E and we immediately calmed down.  We didn't want to incite Greg who needs a peaceful, loving atmosphere in which to thrive.  That is the biggest change in our household since Greg moved home.  We are more aware of HIS needs, of HIS demands and why understanding HIS world must come first for the peace of our household as well as for Greg's happiness.

When we had the cart's side support bars backward, we were able to turn them around to accommodate the wire pull out drawer without a problem. Again, spelling T - O - N - E  helped!  No swearing.  No stress.  We'd been crushed many times before in life, so a little kitchen cart would not defeat us.  We moved on to the drawer stop.  I glanced at Greg who was watching the entire process.  Perhaps he, himself, was shocked that Jay and I were on our best behavior?  After all, he's seen us at work often, and it's not pretty.  He was fairly quiet as if incredulous that Jay and I could work together.

Oops.  By putting together the frame wrong, the two teeny drilled holes for that pesky little piece of plastic were on the wrong side of the structure.  If we pulled out the drawer too far, it was crash on us in our old age and probably break a toe or two.  Jay said, "I am going to put this screw through the drawer stop on the other side."  I replied, "No you're not."  He said, "Yes, I am. Get away."  I said, "You are going to put that screw right through the side of the wood!  Let me get the drill!" Despite my reluctance to allow him to move forward without the electric drill, he insisted that he could get that screw into the wood without it, and won.  I am still shocked.  Our drawer stop works.  Greg weathered that argument well.

Without fail, each time we did something wrong, I looked ahead on the directions, and saw that we had created our own problems.  Pictorially depicted only, the instructions were designed to be studied first from step one to step twelve, but Jay and I have our own way of building things.  Without vision,  Without taking time to examine first.  We preferred to start with step 1 and move forward, one painful step at a time, just because.

Finally, we attempted to put together the frame that holds the granite and it just wouldn't go together correctly!  First blaming the manufacturer for drilling the holes incorrectly, we proceeded to try to force them together so the edges met flush.  I knew that I did NOT want to start all over again with a new boxed set.  We refused to sacrifice two hours of time and another couple of weeks for a return.

We persevered, deciding that maybe the corners were meant not to be flush.  And, they are not.  If they are?  Oh well.   (See picture below.)

We are not perfect, either.  We did, however,  manage to put together a kitchen cart, with wheels.  It rolls; the drawers pull out and close; the wine bottles don't lean forward like they should, but they sit nicely; the granite sits on a support structure that looks odd, but is functional; and we managed not to fight, not to swear, not to upset Greg, not to verbally harangue our spouse's lack of attention to detail.  

We have evolved.

Wherever we move, this cart is going along.  It represents triumph.   

 

 

 

 The Squaresky without the squared edge.

The Squaresky without the squared edge.

Could this be what the manufacturer intended?  I think not.  Jay thinks it is. Another example of belief, exclusively, in our own theory.

 

 Voila!  The perfectly imperfect cart.

Voila!  The perfectly imperfect cart.

Serves to remind us that life comes with no promises.  We are happy, blessed and got the job done. 

Letter from the Heart: Changing the Way Kids Think, Final Words

This blog in no way reflects the opinion of Milton Hershey School where I taught for 24 years.  The words and thoughts are solely my own.

 

I constantly evaluate the way Jay and I have taught others to work with our son and to understand him, and I see that it is a life long commitment.  What inspired me to write this final blog on the lessons I taught my students this year about how to treat special people happened just last evening.  During a crab night celebration at my sister's house, Greg was pointing to his ribs and mac and cheese, unable to move forward to eat without making that decision between choosing one or the other.  My nephew who was seated next to him clearly didn't know that Greg was stuck, needing his usual prompt when OCD and the need to make a decision between "right and wrong" or, rib versus mac & cheese hit randomly, as it often does.  I explained to my nephew that all he needed to do was to be verbally decisive and show Greg one or the other.  We play the game of "yes/no" daily.  Greg points to one video, one piece of garlic bread or one French fry and Jay or I say, "Yes", then Greg points to the other and Jay or I say, "No."  In this way, after a verbal prompt, Greg is able to move forward.  He just needs someone to make the choice for him so he is not responsible in case it is the wrong choice.

As I think about my students and the lessons the other 8th grade reading teachers and I tried to teach about how to act around special people, I realize that everyone is capable of both teaching and learning, increasing one's own empathy and knowledge as well as evoking those traits in others.  It just takes a clear objective, patience and constant advocating for people who are special.  In other words, even if you don't have a special needs family member, you can still advocate.  Just look at the commitment of the adults who contribute their time to our mission every Saturday at Red Crown Bowling, those who do not have a child or family member of their own who is special.

I sifted through all of the emails that the students sent me after I shared data about their growth with them.  The question I posed at the end of our unit: How has this unit, all components, changed your thinking and your willingness to learn about people with special needs?

To refresh, the unit involved several topics.  First, we read excerpts from Flowers for Algernon, a masterfully creative book about a special needs man who opts to have brain surgery to make himself smarter.  The surgery is successful, and Charlie's intelligence greatly increases.  I don't want to give away the ending, but I can say that the people who dealt with Charlie throughout this journey empathized with him, but only after lots of introspection and painful lessons about the acceptance of all people.  Next, we flooded our students with information about autism and read a chapter or two of my book with them.  Finally, we had them make pledges not to say the "r" word after they read of a young lady's claim that she has been deeply hurt by the derogatory use of this word.

Here is my favorite email that I received back from the many I read:

Dear Mrs. Squaresky, 

During this unit, my thinking about people with special needs changed.  I used to think that they weren't capable of doing much and needed a lot of help.  In some situations, I now know, that is the case.  When we did that survey about people with special needs everything I answered was true, but now I have bigger passion on helping those kinds of people.  This weekend my student home took me to the movie theater to watch "Batman vs. Superman".  I had to go to the concession stand to get something, and I happened to notice a man in the back of the theater with special needs.  He was holding these actions figure of Batman.  I didn't say anything to him, but he said something to me..  The man said "hi".  Now that I look back to that, I would not have had the courage to say anything to him in the first place if it weren't for this unit.  I said "hi" back to him just like I would have said it to one of my friends. After the movie we were leaving to go back to the student home and I saw him walking home.  As soon as I saw him I quickly prayed to God, "Lord, please bless this man, that you lead him and guide him toward whatever it is that you put him on this earth for."  From this unit I learned that people with special needs are human beings like me too.

Kind regards, A student, 2016

(I am not at liberty to name this student.  So sorry!  Enough said.  Her message was shared by others, just not so eloquently and heartfelt.  It's all about taking those initial baby steps toward change.  I am proud of this student for doing just that!) 

 Cause and Effect

Cause and Effect

Greg studies the ocean, watching it take over his castle and fill his moat, but he can't make some of the essential decisions of life.  Mac & cheese or rib?  He gets stuck sometimes....one of those unique side effects of autism. 

Ode to the Human Brain. AKA You Just Can't Know What They Know

 

There is no more remarkable organ that the brain.  It houses everything of importance in one's life: memories, experiences, learnings, reflections, new ideas, and more.  It reveals, as it so often does when we call on it to help us, or does not reveal, what one knows.  With autism, it often does not reveal.  I have long suspected that our silent children with autism know more than they show, and I have wondered how frustrating it must be to be shut off from a world which relies so heavily on communicating one's thoughts and needs for survival.

 

I know certain "autisms" to be true.  When our son experiences something and cannot verbalize or discuss or reflect about the event, he sometimes finds a way to let us know, often months or years later, what he learned.  

 

On Saturday, en route to the beach, the trip was interminably long due to traffic jams and construction, so I grabbed the Magna Doodle and played a game with Greg.  Somewhat verbal, although not reciprocal conversation verbal, with spelling and basic math skills under his belt, Greg has a vocabulary that is sufficient to play a word guessing game even though he cannot make full sentences without borrowing lines from video tapes he has seen over the years (much like the young man recently seen on television who used Disney videos for his communication needs).

 

I wrote spaces indicating the number of letters in the word, filled in one, or two, or even three letters and showed the Doodle to Greg.  I could feel him studying.  Sometimes, as in _w_. ___. _t_. ___. ___, I intended the simple noun, "water" and Greg shocked me with a verb like "watch."  Jay and I laughed together as Greg engaged fully in the activity which would help him pass time doing something that enabled him to show us what he knew.  Believe me, I have witnessed in my 34 years of teaching that all children want to show how smart they are, even 29 year olds who have grown up in a world different than a normal one.

 

After playing awhile, I tried a few more difficult concepts.  Curious to see if Greg knew some more advanced vocabulary that is a bit abstract, I wrote __c__. ____. ____. __y__.

 

Jay and I just looked at each other, each incredulous, as Greg answered, "city."  I can't remember that Greg ever learned about that, but I recall that we often pointed out Philadelphia when traveling over the Ben Franklin Bridge.  Had we said "city"?  We couldn't recall.  Certainly in school, Greg's elementary teachers had taught this in a basic geography class, but that had been years earlier.  Could he remember that from twenty years prior?  We'd read lots of books to Greg over the years, but did a book teach him the word, "city"?

 

We continued the word game.  I taxed my mind, thinking of some of the projects Greg and I had done together as homework at Linglestown Elementary, and came up with our pine tree project.  We'd walked through our development taking pictures of every pine tree, then identified what type of pine each was and labeled them on a poster.  I can't remember ever mentioning the next shocker, __f__. _____. __r__.  _____. _____. __t__.  I was certain Greg would never get this one.  Yes, he's seen Bambi and Land Before Time.  Still, we always used the word, "woods", when hiking the mountain.  Greg looked at us, certain in his choice and shouted, "Forest!"  Shaking our heads in surprise, we laughed together at his knowledge!!  

 

To engage Greg in a word game that normal children enjoy, to have him show pride in his guesses, to see what vocabulary he has stored in his brain over the years that we might never know otherwise, to get a glimpse into how his mind works as he guessed words that sometimes fit, other times did not, and to experience this shared learning with Greg....life doesn't get any better.  Ordinary family moments that turn special are the treasures of this existence.

 

Never underestimate what your child has stored away, even your nonverbal child.  They see, they copy, they hear.  They learn.  Otherwise they could not handle the difficulties presented to them daily in this non autistic world.  All the more reason to get rid of the label, MR, when classifying our children with autism and find a different way to categorize them.

 

 Atlantic City Boardwalk  

Atlantic City Boardwalk  

The Crooked Man

I have absolutely no claim to my crooked man, except that he smiled at our family on Monday.  I had not seen him in a year or two and was relieved to find that he had not met some kind of sad ending.  He was just as happy to see me as I was to see him.  As we biked past him, he looked up and said, "Good morning."  He smiled.  My smile was bigger....I was elated.

 

Our form of special lies in Greg's autism.  Greg's strength is not unique.  All people with autism "deal" minute by minute every day of their lives.  However, I believe that it takes another autistic person to fully empathize with his struggles.  I marvel at Greg's coping techniques in what must be a really confusing world. 

 

What might the crooked man think of us when we bike past him?  Is it because we have "special" in our family that he did something he had never done before by greeting us?  Was it sheer coincidence?  I think the former....

 

His own form of special lies in a physical disability.  He leans forward at quite a significant angle and cannot straighten up.  With a gait that is awkward but sure, he plants one foot in front of the other, and to see where he is going, he lifts his head. He knows our family thanks to Greg.  First, Greg rides behind my husband on a tandem bike and second, he sings when he is happy.  Everyone strolling by notices Greg including my crooked man who heard him singing in the past and recognized us on Monday by Greg's shrill, throaty chant.

 

He is MY crooked man because I wrote about him a few years ago, and he appeared on my own "autism journey".  I wrote about him to teach my 7th and 8th grade reading students about perspective.  As inquisitive as 8th graders can be, they were full of questions about him like, "Did you talk to him, Square?"  And, "Did you ask him why he walks along the Susquehanna River?"  They wanted to know all of the details of his life, naturally!  They accepted my answers that I simply could not interrupt his walk to do a meet and greet, and they respected his need for privacy despite their curiosity.  They loved the assignment I gave immediately after discussing "perspective".   Pretend you are the crooked man and write a poem, essay, reaction, skit or some other original writing sample from his perspective.  My students did a stellar job of imagining the difficulties faced by someone with a crooked back.  

 

I'm sure you can imagine their writings!  They gave him a bent back from a war injury, a car accident, a debilitating disease or a genetic mutation.  They even had him feel sorry for the family with the autistic child who rode by him each day as he walked the Susquehanna River path.  That's the one that always gave me pause because I rarely try to guess what others think about us. I feel sorry for my crooked man and never thought about his reciprocal feelings about us!  Just because I live with someone with autism doesn't mean I have insight on what others think about my family.  However, in the case of the crooked man, I know this.  He reacted to our presence on Monday.  He gave me the first "Good morning" I ever got from him.  He recognizes that we have survived just like he has. 

 

The next time I see him, I'm going to introduce our family and let him know somehow that he helped me that day.  If my students are correct, we will have one of those life-changing conversations that begin by chance and show us that nothing happens by chance.  Just as my crooked man made me feel better that day, maybe we made him feel better, too.

 Greg analyzes the river

Greg analyzes the river

Our bike ride along the Susquehanna always includes time to throw rocks.  Next time we might be able to add a brief conversation with our "walking man." 

We Are Our Brother's Keeper

As we near the end of a unit on Flowers for Algernon, I watch with interest as our students form new learnings about themselves and share personal feelings about a new topic, the question of what life must be like for someone who is a slow learner. Students were encouraged to think about the following questions and many more throughout our study.  

How do you feel when you can't perform a skill? 

Would you have a life changing surgery to be smarter?

Would you befriend a special needs child?

Will you use the R word (retard) in the future knowing that it hurts people?

Would you help a special person who is the victim of bullying?

During our reading of the dishwasher scene in which Charlie, now surgically altered from a low to a high IQ, laughs at a young waiter who has spilled dishes, I could hear the silence as my students processed what they'd read.  Charlie, realizing he was once challenged, changes his tone and yells, "Shut up! Leave him alone! It's not his fault he can't understand!  He can't help what he is!  But for God's sake...he's still a human being!"  (Keyes, Holt McDougal Literature, 215).  I wonder if they were thinking of a time when they bullied someone for a mishap similar to this one, or if they were a victim of laughter during an especially embarrassing moment.

Students' minds are malleable at this age, AND students are capable of judging right from wrong.  That doesn't mean they always get it right, but they try.

With that in mind, colleague Marjorie Burger and I had little to do but allow our students the opportunity to read a powerful story and learn how it must feel to hope for something like a better mind, only to have the experiment fail.  We heard the sympathetic "Oh, no's" and we listened to their forthright comments with each major change in Charlie as his penmanship improved, his higher level thinking capability developed and his acquisition of knowledge tripled his IQ.

As the mother of a child with autism, the question of bullying interested me the most.   Earlier in the year, I'd told my students that someone was stealing from my son, an easy target.  I'd shared some of the more poignant chapters of my life with Greg, also.  Naturally, when I posed this question, "If you saw someone "abusing" a special person, what would you do?" I never expected nearly 100% of my students to say they would help.  After all, it is not easy to intervene when danger lurks.

Here are some of their answers. 

"I would stop it because abuse is NEVER right." 

"I would call the cops or defend them." 

"I would go and tell them to leave them alone because their life is already difficult with their disability and you're making it more difficult."

My school will be proud of the many students who responded with a solution provided during our bullying lessons: 

"I would try to confront them, and if they didn't quit, I would get a trusted adult. 

And, when answering violence with violence sometimes is a solution:

"...something probably very violent (no lie)."   

"yell at them for being rude, record it and post it on the Internet, force them to apologize..." 

and, last,  

"I would put on my ring, I would put on steel toed boots, and I would beat the crap out of them." 

How many of us wish for the passion of youth so that we could address bullying just like that?  

Three students, only three out of 110, responded honestly that they would not help. 

"I don't really know.  I would feel bad, but I might not have the strength."

"No, none of my business." 

" I would keep walking."   

I can only hope that these three, in the final questionnaire, change their minds and decide to help.  I need to know that someone, anyone who comes across a bullying situation with a special needs individual, will intervene.  My son needs it.  All of our special children need that assurance.  We, parents, need it.  

After all, are we not our brother's keeper?

 

 (Note:  These opinions are my own and in no way reflect the viewpoint of my school.)

 Greg's brother

Greg's brother

 The men being silly

The men being silly

Friends of Special Children

Greg is 29 now.  He was educated with both special children in normal, inclusive classroom settings and children with special needs in life skills and learning support classes.  By "special children," I mean children who have that certain "je ne sais quoi" which sets them apart from other normal children, children who are fearless and who jump into new situations, secure in their concept of self.  

These special children gave Greg the gift of friendship and unconditional acceptance.  He knows what friendship is, thanks to these intrepid souls who spent hours playing with him when he was largely nonverbal, and who helped with speech, movement, arts & crafts and music therapy.  They went to Hershey Park, Sesame Place, swimming pools and skating rinks with our family.  In fact, they went everywhere with us.  Greg learned how to function in society thanks to his friends.  

Before I had a son with autism, I never thought about the need to be exposed to special children at a young age.  Children only know what they experience.  In school, it helps when a teacher can introduce a student's special needs, perhaps teach the class about the challenges faced by that special child.  Therefore, was it unfair of me to pose this question to my students?  My students are educated in a unique setting, a setting with no wheel chair students, no deaf students, no blind students.  How could they answer this one with little to no prior experience? 

This question I posed to 110, 8th grade students was, "Would you ever have a relationship/friendship with a special child or adult?" Some heartwarming, some brutally honest and a few well thought out answers convinced me something I always recognized about 8th grade students.  They tell the truth.

These responses made me sad. 

"No, because I feel weird about it." 

"To be completely honest, I don't think I would because I don't have the patience to take care of and be friends with them. "

"No, because I wouldn't know how to act around them and it would be awkward." 

On the reverse: 

"Yes, I would have a relationship/friendship with a special child or adult because they are normal people, too.  There is no difference." 

"I would have a relationship/friendship with a special child or adult because they can actually be friendly people."

And even this one, a personal favorite: 

"Yes, I would date a kid with problems because people with problems still need love to make up for the disrespect some people give them." 

What surprised me, in a positive way, was the number of students who were really comfortable around their special family members.  I never anticipated that so many of my students would have personal experience with this question.  They described their honest feelings with no embarrassment, just acceptance.

"Of course!  My cousin has autism and my "mom" and grandma work with people in need." 

"Yes, because my younger cousin has some type of brain disability and he is cool and funny.  I treat him like a regular kid..."

These statistics show that society is making progress toward acceptance of people with special needs:

80% responded that they would have a friendship with a special needs person. 

15% responded negatively.  (Most felt they didn't have the patience or experience and a few even stated that they preferred friendships with kids like themselves.)

5% were "iffy". 

These final two journal entries were just perfect.  One young man said he would, indeed, have a relationship with a special person.  In his own words, "because I'm nice." 

The other, the most powerful..."...my friend is color blind, my cousin is autistic, and my other friend is blind, so I'd be a hypocrite to say "Oh, you shouldn't hang out with them because they are retarded or stupid or moronic," but in actuality, they are smarter than most people because they have to look at the world from a different way." 

 

 (Note: These opinions are my own and in no way reflect the viewpoint of my school.)

 

 Friends

Friends

All friendships are special! 

 

The "R" Word

"It's not nice, but it's no different than the "n" word."   

" I grew up using the "r" word, so it's a habit." 

"OK, the word retarded could be used in a playful manner, such as if your friend does something stupid or funny, you might joke around and say, "you moron" or "you retard" but if you use it in a hurtful manner, then it's wrong." 

"My feelings of that word are "I don't care."  That word doesn't matter to me since I hear more words that are worse every day." 

"I will admit that I used to use that word without thinking about it.  Now I think it is very offensive to the person you say it to and those who actually have that disability." 

" I never use it anymore because of my grandmother working with special needs and because of Square."  ( Note: Square is the blog author's nickname.) 

What an endeavor we took on to organize student statements about the "R" word into some kind of meaningful study.  As one can see from a sample collection, the users have varied opinions.  As these statistics show, we are somewhat accomplished as a society in changing the way people think about our special needs population.  However, the word still creeps into movies, television and dialogue.  

If our sample is untainted, and a sample like this can never be 100% unbiased because kids talk about teachers and what they learn all the time, then our population is indeed changing with respect to the use of "retard".  

Here are the results of the question I posed to my 8th grade students, " What are your feelings about the use of the R word?  The sample included 105 responders.

1.  60% responded that they never use the word. 

2.  23% responded that they use the word, but not to hurt a person who is special or disabled.

3.  11% felt it was acceptable to use the word without exception.

4.  2% said whereas they used to use the word, they no longer use it under any circumstances. 

Some answers could not be categorized.  For example, one young lady spoke highly of special children but didn't fit into any survey group when she said,

"Because I have special children in my family I do not hate the use of that word because special children are very smart in other ways (normal) children their age are not."

This student seemed to capture the common belief shared by the students, that the word, not as a substitute for stupid, but as an extreme insult, was the intent of habitual users.

"I feel that when most people use it, they are taking it to an extreme and are usually using it in place of another word like stupid in some situations." 

Of particular interest to me, personally, in our diverse population, was that students equated the use of "retard" with the use of the "n" word showing the higher level thinking skill of evaluation. Getting students to this level of learning is the goal of all educators (common core aside for the moment.)

"I think that it is just as bad as the "N" word used in an offensive way."   

This next opinion is that of a young lady that I can work with during our Flowers for Algernon unit.

"It really depends on who is saying it, who it's said to and why it's being said." 

As the parent of a young adult with autism, my need to change the world is more personal.  I want my son's friends and my son, all dealing with day to day challenges that are unimaginable, not to have to deal with verbal insults as well. 

After reading the email that I received last week, I realize that we are, at the very least, encouraging our students to think about what they say before saying it. In this email, an English teacher said she overheard a student self correct after using the word, "dumb". What a huge success in education if we can effect change in making our students nicer.  If only everyone developed the life skill of filtering the harsh words before speaking.

Give me a few more weeks and I'll hope to read more like this answer:

"I think it is rude and disrespectful." 

And, from a student who thought about it, trying to inject some humor into his response, 

"I feel like the "R" word is disrespectful.  You might use it to someone and they could be the "R" word!"

Ay dios mio!   Art Linkletter said it best, "Kids say the darnedest things."

 

(Note: These opinions are my own and are not meant to reflect the position of my school.)

 

 

 

 

 

 

 A special smile

A special smile

Greg is treated like royalty at the local tree farm. 

 Puzzle passion

Puzzle passion

No more "R" word!  Everybody has special skills!

Changing the Way Kids Think

Can we change the way young teens think?  Is it too late by middle school?  After all, some believe that everything important has been taught by kindergarten.  Many educational institutions have taken on the challenge, over the past twenty years, of teaching anti-bullying, empathy, respect, cooperative learning and so much more.  How many of these educational institutions actually find out whether or not the instruction resulted in changing the way their students think?  Very few is my guess.  How many parents actually think about a teacher's role in their children's lives, the teacher who spends sometimes 8+ hours a day with your child!?  I did, but not for my son who is normal, rather for my autistic son.  It was essential for our survival that we know what school was doing with Greg.  Mandated IEPs kept us in the loop and so did daily journals and phone calls.

We, teachers, are so much more than "common core" advocates.  We have an active voice in teaching your children to accept differences among people, and we feel empowered to do so.  

The eighth grade teachers at my school teach the famous novel, Flowers for Algernon, (Keyes, 1966), in the spring.  Realizing we are taking on quite a challenge, to change the way middle school students think, we promote acceptance of differences in intellectual capacity using a variety of additional resources and techniques. Flowers for Algernon is about a man who, unwilling to accept his IQ of 68, has brain surgery to change his intelligence.  What happens by the end of the book shows students that Charlie had worth, not as the brilliant result of a surgical procedure, but before, when he was learning disabled.  Powerful, needless to say.  As supplemental lessons, we begin by sharing John Quinones' "What would you do" segment about an autistic family in a New Jersey restaurant.  (See YouTube for other segments. They teach empathy for homosexuals, blacks, and other minorities).  We then share an newspaper article about a young lady who was bullied and called "retard" at her school and tell what she did about it.  Our students must pledge not to use the "R" word ever again by signing and displaying their pledges for fellow students to see. We teach the students the characteristics of autism, showing them how to interact with and accept the sometimes odd behaviors of autistics. We blog about questions, sort of like "what would you do" scenarios, with our students.  We read the chapter in my book which describes a scene in K Mart when Greg had a tantrum and no one offered to help.  We discuss it.   We problem solve.  As a grand finale, we show videos such as Awakenings with Robin Williams, movies in which practitioners learn to have unconditional acceptance of special people.  

Students recognize differences in learning abilities from their toddler years.  They are quick to pick up and use the "R" word (retard).  They shy away from having special friends.   Our school's fund raisers become so much more meaningful when we have a sibling, cousin or friend afflicted with the target population for the fundraiser.  How can we effect actual change in our students when it comes to having friends with special needs, to helping at the Special Olympics, to stopping the use of the "R" word or to helping out someone special who is bullied when they are outside of school, after graduation?

Another teacher and I took on this challenge this year.   We asked our students five questions.  They journaled their answers, completely unaware that we were going to "study" their responses both prior to reading Flowers for Algernon, and afterward.  

The five questions:

1.  Would you ever have a relationship/friendship with a special child or adult? 

2.  Would you ever volunteer for a group like Special Olympics, special bowling, babysitter group? 

3.  What are your feelings about the use of the "R" word?

4.  If you saw someone "abusing" (verbal, physical or other) a special person, what would you do?

5. If you spot a special person in trouble (like a blind person trying to cross the street), what would you do?  Would you help or let someone else help?

Next blog?  See how the students responded to the first question.  In early May we will reveal the follow-up answers.

 

 

 

 Unusual opportunity to study teen growth

Unusual opportunity to study teen growth

Can we change the way teens think?  Prior to reading excerpts from a book about a mentally challenged man, students journal their opinions about a variety of topics related to special needs population.

It's about the Cake

 

  Years ago, when I asked my blind students what they would ask for if they got a do-over, not a single student said, "I'd like not to be blind."  They accepted their blindness as part of their being.  Their lives did not revolve around their disability.  In fact, I deem that many did not view themselves as disabled.  They all learned how to read and write, how to get around the city and how to navigate their special world.  Well into our class discussion, I pointed out that not one had asked for vision.  They all pooh poohed that away assuring me that, of course, they wanted the gift of sight.

So when I was watching Squawk Box last week, and the head of Autism Speaks, Bob Wright, was talking about having the mapping of the autistic brain done in 5 years, I was astounded!  Would that lead to a cure?  Could that lead to a cure?  Could we make Greg normal?  Had brain research progressed that quickly?  I obviously had not kept up and vowed to read more after retirement.

Did I even explain this medical breakthrough correctly? What I got out of Wright's speech was that we are getting closer and closer to being able to effect change, possibly inutero change to the human brain.  Unimaginable, right?  Is that good?  Am I crazy to even ask that question?  Doesn't society need our autistic children and adults to help solve the myriad problems of the world?  After all, autistics possess some unusual traits which I see in my son: ability to stick to a task to completion, superior memory,  ability to read and chart complexities beyond the typical human, problem solving abilities to beat the band, superior coping abilities in a world not created for them, and more.  Some are present in some autistics; others are present in others.  Do I really want to live to see a cure for autism?  Greg is who he is thanks to his particular genetic combination.  He has accepted his differences.  I cannot even imagine the alternative, that he is not happy.  He has given something special to our family.  I can't imagine Greg normal.  

My husband thinks I'm crazy.  He would take a cure for autism and change Greg NOW.  I think I would take the cure if possible, but at what consequence to Greg and to our family?  Sometimes I think that everyone we have met over the years has not only added to OUR lives.  Haven't we added to theirs?

There is the waiter in the Mexican restaurant in Sedona who, upon identifying Greg as special, brought him the biggest piece of chocolate cake we have ever seen!  There is the man behind the counter at bowling who, for years, charged Greg league rates to help us defray some of the costs of raising a special child.  I'm certain he felt good about that because he always smiled afterward.  In fact, he was genuinely interested in Greg which he showed in his frequent attempts to communicate with him.  While on a trip to Niagara Falls, a waitress in Canada gave Greg cheese cake and didn't charge us.  There are so many people out there who were especially nice to Greg over the years that I cannot begin to thank them all.  I am not just talking about family and friends.  Some people are those I can't mention because it might get them in trouble with the boss.  On the other hand, maybe, just maybe, the boss also has that "je ne sais quoi" heart and would want to give that little extra help to a special child.  You know who you are out there, people.  You got the compassion gene.

So on this, Autism Awareness Day, I want to say that within our kingdom, we have awareness all around us.  It is wonderful to pick a special day to bring attention to autism, but in our world, we feel that awareness every day.  Thanks to everyone who makes time for autism.  We so crave a moment of normalcy in our each and every day that we bake cookies with blue icing (credit to autism daddy's wife & Autism Daddy, Facebook) to give to our son's teachers.  It's a chance to give back, yes, and feel normal, but it's also our own way of saying, "Thanks!"

 A little piece of special at Taos Cantina

A little piece of special at Taos Cantina

Greg's Sedona waiter, spotting his autism, brought him an immense slice of chocolate cake!   Some of us go biking in Sedona.  The Squareskys eat cake.

 Sedona hospitality at Taos Cantina

Sedona hospitality at Taos Cantina

Raise Your Hand

How difficult it must be to be 8th graders!  Among the lengthy list of problems that adolescents cope with, listening, or the inability to listen, isn't a slight deficit.  It's huge.  Eight years teaching middle school has shown me that this age group truly only focuses the first few minutes of class, then begins to tune out unless I entice them to learn by calling them out personally with a "Jaz!  Look at me!" Or, "Luis, stop talking and focus!"  "Jacob!  Head up!"  I refuse to allow them to run for a drink or visit the rest room or locker during those precious, teachable moments at the beginning of class.  Yes, they get mad at me because their own agenda is so important at that age, but unless I want to repeat myself throughout the class, I must grab their attention right away and teach.

Now, imagine that your child has the inability to focus for long periods of time combined with autism which often affects auditory processing.  Most adolescents have control over what they take in and can think of ways to pay attention in school if they are motivated to do so.  On the other hand, the autistic child, my son, for example, only hears one or two words from each sentence.  Greg has a double whammy; he is not wired to pay attention for extended periods of time, and he does not process language normally.  

Early on, Jay and I were told to simplify our messages to Greg by simplifying commands to two or three words.  "Come!"  "No singing.". "Eat slower."  We also discovered that writing or scripting our words helped Greg understand the world around him and cope with the many frustrations he found in his autistic condition. To fully appreciate how he hears, I try to figure out which words are the most important in each sentence I hear.  The futility of this lies in the importance of all words in a sentence: nouns, adjectives, verbs, prepositional phrases...they are ALL essential!  Greg's world is a mess.  In the simple question, "How old are you," he only hears, "How are you?"  He always answers, "Fine".  I wonder if he truly understands the concept of age.  

That is what the special education teacher, the parent and the siblings must know about someone with autism.  Every minute of every day the person with autism struggles to comprehend his world.  It must be exhausting.  And frustrating beyond belief.  My husband is slowly losing his hearing.  It drives me crazy as I am sure it does to all aging couples.  Then I look at Greg and I realize that he has had to cope for 29 years with hearing deficits, and I pull from within to be patient with Jay.  Not in my nature, for sure.

Like a teacher must find a variety of ways to communicate with distracted 8th graders, so must anyone who works with an autistic child find ways to communicate.  It is of paramount importance in life.  If the picture exchange method doesn't work as it did not work with Greg, go to an APP on your I Pad.  Sadly, the I Pad had not been invented when Greg grew up.  Another option might be to teach your child how to sign.  Sign Language 101 might be enough.  Give your child extensive instruction in "Yes" and "No".  Write these two words down, and if your child can read, work with him until he can point to the affirmative or negative.  Your lives will improve exponentially.  

Behavior modification worked for us.  Yes, we ruined Greg's teeth with gummy bear treats, but we achieved milestones with the reward system of instruction.  Get into your child's space.  Sit directly in front with rewards in one hand and simple objects in another.  Name the objects or simple commands over and over again.  If your child is nonverbal, he might have receptive abilities that will enable him to work, enjoy a variety of activities in which some kind of verbal instruction is involved and be safe. Appreciate your child for his visual ability and how special it must be for your child to learn any skills at all when the auditory sense is compromised.

When you take your child to Adventure Sport, you will witness that moment when, before the start of each and every ride, the worker says, "Raise your hand if you have any trouble with your go-kart."  Lo and behold, you look at your child and he has raised his hand. He never heard or comprehended the other words.  Every time you go, every ride he takes and every time he hears the words, "Raise your hand,"  Greg raises his hand.

We laugh.  What joy we've been able to find in autism.  And it hasn't been easy to get to these words.  

 Raise your hand! 

Raise your hand! 

 

The workers of Adventure Sport know Greg well or every time he raises his hand, they would run to help him!