Day #21 – Homecoming Amens

One of the things that is really ‘striking my fancy’ about writing this blog is how I’ve refocused on Tucker.  Refocused on why we do what we do – how we say what we say.  Along with this…my best laid plans go awry.  It doesn’t really matter what each day’s post is about – but I have a plan.  I have a plan because I’ve been writing for two years already.

But, last night at supper the plan went awry again.  New topic.  New post.

My bonus kid, Alex. Yes, I call him bonus, not step.  He’s not a ‘thing’ in my house.  He is an amazing human being – and he is a BIG bonus.  You know like when you used to play Mario Brothers and you would hit one of those boxes and then you could jump super duper fast and you would get all kinds of coins?  That’s what he is like.  He adds a lot of really awesome extra coins (albeit ‘intrinsic’ coins) to our lives.

So, tonight we were sitting and eating supper.  Like we do on most nights.  He’s often working or shooting hoops – but when he is home we all sit and eat together.  I think it will forever be one of my favorite times…sitting, eating, talking, and laughing. Tucker and his sister are enthralled with their ‘Senior bonus brother.’ I said to Tucker,

Me:  “We have Coronation tonight at 8 PM, so be prepared for that.”
Tucker:  “What’s Coronation?”  (I then realize that I haven’t really explained this whole thing to him.)
Me:  “Alex is like a Prince and tonight we go see if his friends elected him King.”
Tucker:  “Huh? Alex is a Prince?”  (I then realize that this is NOT the way to explain this.  Alex has been with us long enough that he’s just looking at me with a cheesy grin, he knows I have just put myself in a serious pickle.)
Me: “No, he is not a Prince.  Tucker – it’s hard to explain. The students choose eight young women and eight young men for the Homecoming Court.  Then, they vote again to select a King and Queen.”
Tucker:  “Well…do they play a game on the court?”
Me:  “No, it’s not that kind of court.”
Tucker:  “Well…I don’t understand what kind of court and what is the purpose of all this?”
Me:  “Well…I don’t really know.”
Tucker:  “Seriously – what’s it all about?  Why would a group of people elect another group of people to elect a King and Queen.  I mean it’s not like we live in England or back so many years ago.”
Me:  “Tucker, I don’t know.  It’s just tradition.  I know it seems silly – my school also had a Homecoming Court.  But, you’re right – I’m not sure there really is a point.”
Tucker:  “Okay…so I have to go to this thing that doesn’t really have a purpose?”
Me:  “Yes.  Yes, you do.”

Bless his heart.

This has to be one of the most disheartening and heartwarming factors all at once. I know when other children are being mean. I see them making fun of him. I know what they are thinking – I see it in their faces. I see it in their actions, when he’s left out…left alone while the other boys go play.  As other boys (mostly their awesome parents) have made an attempt to get to know Tucker it has become MUCH better.  Bless those parents by the way…who talk with their children about everyone being different and wonderful in their own way.

I love who he is. I wouldn’t change one thing about him – not even the meltdowns. He tells me that he’s not a ‘popular’ kid.  In the next sentence he will tell me that he ‘doesn’t understand who chooses the popular kids.’ This was made even more obvious from the conversation last night.  To him, everything has to have meaning – otherwise it’s ultra confusing.

He is still mostly unaware of how other children (tweens) are to him, but last year came home and said, “I tried to give a girl a high-five and she looked at me and said I don’t give high fives to weirdos.” I know it’s coming…but in the meantime all I can do is pray…

Thank you God for making him unassumingly unaware of the injustices that are going on around him. Please teach those around him to show acceptance, love, and patience to all. We never know what battle someone is facing on any particular day.

Can I get an AMEN?!?!?  Even from those of you who may not say Amen.  Can I get an AMEN for the encouragement to stop all of this ‘popular kid’ business?

Amen. I say. Amen.

crown-iw

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Day #20 – The Turtle or the Hare? (Part 2)

The turtle or the hare? Well…it depends on the age. Then? Definitely the hare. Watch for these children – if a child in your neighborhood is on the spectrum, keep an extra eye out.  If you know a child at your church or school is on the spectrum, keep an extra eye out in the parking lot.  If you take a child (who happens to be on the spectrum) somewhere without their parents, pay attention. PAY ATTENTION.  I went so far as requesting a sign on our street (when we lived in a residential area).  The city resisted because of the ‘liability’ – but it sure would be nice for communities to push for this, just to increase awareness.

Children who are on the spectrum move quickly, often without thinking. Tucker used to be this child. He would run into the street.  Run through a parking lot.  Run through Target.  Trust me, these parents DO care. These parents ARE paying attention.  PLEASE do not give them ‘the look,’  most of us are doing the very best that we can – but we are so often overwhelmed.  Honestly, you can’t pay enough attention to children (especially when young) with autism. While this is true of all of our children – any of us could ‘lose’ our children in a moment – but the danger is heightened with these children.

I think the ‘issue’ is three-fold.

First, they are often so focused on the task at hand that they don’t see danger.  If the task is playing basketball and the basketball rolls into the street they are ONLY focused on retrieving the ball.

Second,  they are in sensory overload. Especially when they are young and haven’t learned coping strategies yet.  So, the second they get overwhelmed they may just run.  Run to get away, run to deal, run to focus on running, run because they are so overwhelmed.

Finally, they often have no comprehension at what dangers exist.  Many of these children simply don’t understand danger.  At this age they are spending most of their time trying to figure out how to live in the world…they are not thinking about stranger danger much less being hit by a vehicle.

I also think this is why Tucker turned into a Hare. I made him too afraid. He used to dart across parking lots. I would be right beside him, talking, thinking we were safe. In a split second he was running. Not even towards the car – just running.  I finally would just hold on to him.  We read social stories of him begin kidnapped to prevent him running through Target. I was constantly talking about the danger, about not taking risks…which led to the turtle.

There has been a significant amount of growth and interest in Autism (and research) during the past few years.  One benefit of this is people reaching out and helping families who have a child on the spectrum.  I have been lucky enough to befriend a family that trains service dogs for children with autism.  I know, it seems like a strange combination – how would a service dog help a child with Autism?

In so many ways.  From Retrieving Freedom’s website (http://retrievingfreedom.org/autism/), ”

  • Tracking will be taught to these dogs so that they can find a child in any location where they have become separated from their parents.
  • Tethering: A tether is attached to the dog’s service vest and the belt of a child. These dogs are trained to sit any time the child forcefully pulls on the tether.
  • Snuggle: Dogs learn to comfort the child in times of panic and high anxiety.
  • Retrieving on command is huge for these kids, since it is an activity that they can constructively do with their new companion.

While Tucker learned coping strategies before we knew about this opportunity, I for one, can immediately recognize how this can help a child on the spectrum.  We welcomed a puppy in May and he and this dog have a very special relationship – the dog LOVES to snuggle Tucker.  Somehow White Sox (the dog) knows.  I don’t know how…but somehow the dog knows.

The dog runs at me.  The dog walks beside Tucker.

The dog nips at his sister.  The dog sits at his feet.

The dog jumps on furniture.  The dog snuggles beside Tucker.

The dog runs circles around my feet when I’m trying to walk.  The dog DRIVES ME CRAZY.

Regardless, the dog wins…

For more information about Retrieving Freedom, contact:

Scott Dewey

319-290-0350

1148 230th Street

Waverly, IA 50677

 

Day #19 – I’m a Colts Fan

Yes, there is a Part 2 to The Turtle and the Hare, but sometimes life takes precedence. Sometimes you read or hear something that you feel inclined to discuss. That happened to me today – so tomorrow I’ll get back to The Turtle and The Hare.

When I write anything about how our life has been turned upside down and right side up by Tucker – I’m really not exaggerating.  Although the world should never revolve around someone, there is a keen understanding that the world is just not the same when you have a  child on the spectrum.

Everything is different…every trip to Target must be communicated ahead of time and planned.  Every dentist appointment is preceded by three days of talking about what the dentist will do.  A new year of Sunday School is brought with worrisome questions about a new teacher, a new room, a new system.  Everything is different.

Although we can (and do) go most places that other folks go – it just takes much more planning.  MUCH MORE PLANNING.

Then…every once in a while you read about an organization that gets it…that really gets it.  All you want to do is be a part of their world – because they get it.  In the past six months there have been two organizations.

The first is the Minneapolis Children’s Theatre.  They offer sensory friendly programming where (according to their website:  http://www.childrenstheatre.org/plan/sensory-friendly-programming):

  • Reduction of loud or jarring sounds
  • Reductions in flashing or strobe lights
  • Modification of the house lights during the performance
  • Accommodated house rules: audience members are free to talk or move during the show
  • Extra staff and volunteer support.
  • Designated “Quiet Room” and “Take a Break Space”
  • Guidance and sensory supports (fidgets, earplugs, noise cancelling ear-muffs) available in the lobby before the show

The Theatre also offers social stories and a video tour of their theatre?  Why?  When you have a child on the spectrum you must practice, a lot.  You have to be ready to answer questions – so many questions that it nearly makes a person insane (I’m not kidding here).  The social story will tell a child what to expect on their journey to watch a show.

The second came today.  The second is why I was prompted to write about this topic.  It seems the Indianapolis Colts have it figured out.  My son is a HUGE Vikings Fan…but the Colts will be sneaking into my wheelhouse from this point on.  Not because of their players or their record.  Because they are attempting to do something no other NFL team (at least to my knowledge – but would love to hear more if any readers know) has done.

This came across my news feed and upon reading it, I was brought to tears (literally).  According to their website, “Fans will now find picture menus at all permanent food counters, as well as customer service areas offering sound proof headphones and weighted blankets to help calm those with autism who may be sensitive to loud noises and crowds. The team has also added a “Social Story” to its website, which provides helpful information and photos. A social story describes situations that a child with autism may encounter in any number of situations in words and pictures that are easily understood by the reader. It is a popular method for preparing children with autism for new or complex routines or social situations.” (http://www.stadiumjourney.com/news/09-26-2014/821/indianapolis-colts-improve-game-day-experience-for-fans-with-autism)

WHAT?!?!?!  Are you KIDDING me? I wouldn’t have to spend hours researching and prepping on my own?  The team already did it for me and I just have to be aware and go to their website?!?!?!  Hallelujah!!! (like the kind of Hallelujah we shout a zillion times on Easter morning).

Who plays for the Colts anyway?  How far away is Indianapolis?  What are their colors? Who is their mascot?

This is now on my ‘must-do’ list….

Day #18- The Turtle or The Hare, Part I

First off, if you read my post yesterday, I must apologize. This morning my mom informed me that there were a plethora of typos. Turns out, she was right. It seems I may have hit publish before I ‘thinkchecked.’ As usual, in a hurry-how fitting for today’s post!

Thinkcheck is my equivalent to spell check…thank goodness for mom.

Well…onto the post for the day.

Turtle or Hare? Fast or Slow?

Well…it depends on the age.

Right now?  At age 12?  The turtle.  Defintely the turtle. Often, children on the spectrum prefer sedentary tasks. As Tucker has aged he has become even more cautious (tomorrow you will get the chance to read about his earlier years, which are MUCH different).

They move slowly and cautiously. They often avoid taking risks. Why? Generally these children do not like the unknown. For instance, this weekend we came ‘home’ for my 20th class reunion. We prepped Tucker for four days, explaining what would happen. Which ‘happenings?’ All of them…where we are staying, which bed he would sleep in, who he would see, what time we would get home, what he would eat, when we would leave. From arrival to departure, he knew the plan. Slow, methodical, steady, consistent.

It really all makes sense – throughout this blog you will read more about his intense fear of falling, of tripping, or of getting hurt- the unplanned, the what ‘could happen.’

He walks slowly, methodically. Honestly, it drives me CRAZY. He gets to a curb he stops. Not because of traffic, but because he will carefully, cautiously step off the curb. Checking the ‘unknown’ of the pavement below. Checking each step…figuring out the unknown-even when it’s clearly right in front of him.

I walk fast, I talk fast, I move fast…which means I often forget, I often trip, I often lose things. Tucker helps me. He helps me slow down, he helps me focus. He also gives me a hard time about never knowing where my purse, keys, or phone are – because he usually does know.

Why? Well, because he often pays more attention to my life, more attention than I pay to my own.

I also have to believe that it’s not just him being overly cautious but also that he is also relishing in the details of life. What life looks and feels like. Because of his heightened sensitives he’s just a bit more aware of the smells, sounds, temperature, lights, etc.

Oscar Wilde said, ‘to live life is the rarest thing in the world, most people just exist that is all.’

That is Tucker, because of his heightened sensitivities he lives, really lives and takes it all in every day. How lucky is he?

How lucky am I?

Thank you Tucker, for helping me slow down and really live..

Day #17 – Say What You Mean, Mean What You Say

Oh boy….this is a biggie.  I mean a BIGGIE. It can also be quite funny…

I CAN’T WAIT until this post goes live.  I had this blog scheduled for a couple of weeks from now, but I had to move it up.  Yesterday, as Tucker was leaving the house to head to school he grabbed something out of the snack/candy bowl (which happens to be right beside the front door – seriously, a mini size Twix does wonders on the way to work).

I heard the sound of a wrapper and said:

“Tucker, What’s that you’re stealing?”

“What?”

“Oh…I know you heard me because you said what.  Remember, if you don’t hear me you don’t say anything.”

“Oh, right.”

“So, what is it?”

“Nothing.”

“Tucker, you’re not in trouble – just tell me what it is.”

“But I’m not stealing mom.  The bowl is right here.  Everyone takes out of it.  So, I’m not stealing anything – I would never do that.  I grabbed a package of fruit snacks and put them in my bag for later.”

Then he walked out the door and I laughed…and thought of Drax.

Have you seen The Guardians of the Galaxy?  This is a perfect example, I am NOT joking…not one bit.  Watch this clip from 35 to 45 seconds.

https://www.youtube.com/watch?v=ixNTdDph5yU

Again – WATCH IT!!!  It’s 10 seconds of your life!!!

See that guy?  It’s Tucker – albeit much bigger and a bit scarier, but Tucker nonetheless.

The best thing about that movie?  Tucker didn’t really understand why we all thought Drax was so funny. Drax was, without a doubt, his favorite character.  In fact, after the movie came out some hailed Drax as being a Spectrum Super Hero.  Check this tumblr post http://merryweatherblue.tumblr.com/post/94638266248/i-took-my-little-brother-who-falls-on-the-autism?c=upworthy

You see the thing is that many children (and adults) on the spectrum understand words just as they are.  They have difficulty picking up the emotion or intent behind the words (which is ironic considering Tucker’s mom is a TOTAL word nerd).  Tucker doesn’t often understand the intent that comes from combining words, actions, relationship status, and behaviors.  Nothing goes over his head, he has quick reflexes.  HA!

As a mother, I beg of you to remember this around our children on the spectrum.  They often think you are simply being mean.  They don’t understand how you don’t actually mean what you say.  I didn’t mean that Tucker was actually ‘stealing,’ I used the term lightly and quickly remembered that he didn’t understand.  When he was four and a HUGE Woody (Toy Story) fan we were in the car and I looked in the rearview mirror and shouted, ‘Reach for the sky!”

woody

He looked at me with a confuzzled look.

“I can’t mama.”

“Oh, why not?”

“The roof is in the way.”

Of course it is.  How could you reach for the sky when the roof of the car is in between you and the sky?  Duh.

We have had to help Tucker deal with this confusion because he was constantly coming home sad.  Basically, he thought a lot of people were simply jerkwads because he didn’t understand the words/phrases those around him would use.  So, we worked for quite a while on what someone’s face or voice may sound like if they are using metaphors or sarcasm.  I simply taught him, “Tucker, if what you see/hear doesn’t match the meaning of the words, you just will need to ask.”

So, if he asks you, ‘Are you using sarcasm?’ Please don’t laugh or be offended, take him seriously.  It’s what I have taught him to do if the words don’t ‘feel right.’

Really, the more I think about this-I think this is a wonderful trait.  What if all of us started to only say what we mean and mean what we say?  What if we didn’t hide behind sarcasm?  What if we really went with the old adage of if you ‘don’t have something nice to say, don’t say it all’ – instead of cloaking our words with hidden meaning and residual hurtfulness.

He’s changed my life…because that’s how I prefer to live.

That’s the world I want to live in, oh wait – I do…it’s Tucker’s world.

Day #16 – Chops, Kisser, Mug, Piehole, Trap, Yap…

No matter what you call it – it’s one of those things that is just incredibly difficult to explain.  The oral fixation.  Most children outgrow this fixation during (and soon after) age two.  Not so for children on the spectrum.  Many of them continue to mouth objects – whether it’s actually putting objects in their mouth or just feeling their mouths and area around with their hands.

It’s a sensory issue. They often can’t feel the differences in objects so they will try other senses to try to make ‘sense’ of the object. They are often trying to make sense of their world in any way. Regardless, it’s difficult to explain to others while Tucker was still chewing on odd objects (paper, blankets, etc.) as late as 3rd grade.  Even now, every once in awhile I will catch him chewing on paper, the television remote, or a wrapper.

In talking with other parents I have found that Tucker’s behavior was not uncommon. I also found solace in several web postings about the connection between hunger and oral fixation. Many parents of children who are on the spectrum feel incredibly isolate.  Seriously, how does one admit to their ‘regular’ crowd that your 6th grader is still chewing on paper, having serious emotional meltdowns, or has sudden rocking fits in Target.

Tucker could eat supper and five minutes later he wants something more to eat. He has a double-whammy here. He can’t always register that he is full (this is covered in another post) AND having something in his mouth provides a sense of relief.  He also has a tendency to rub or play with the area around his mouth.  I haven’t figured that one out – but it’s true.

In fact, two weeks ago I saw a little boy (probably around 4 or 5 years old) doing the same thing.  I thought to myself, “Self…if I didn’t know better I would think that kiddo is on the spectrum.  Reminds me of Tuck – appears normal…but that ‘rubbing’ is just too familiar.” Rubbing all around his mouth – not inside, but all around.  His mom was a friend of a friend and she introduced herself.  Her next words, “I really want to talk to you about all of the things you’ve done with and for Tucker.  My son was just identified as being on the spectrum and I don’t know where to begin.”

From another person’s blog post online, “It seems like I am continually either on the hunt for food or eating, even though most of the time I am not hungry. It just bugs me when I don’t have something in my mouth and have recently started biting my lip. Aging and maturity have made this strange phenomenon subside – but it was one of the most difficult things for me to understand.”

Thank goodness Tucker hasn’t started biting his lip – and in fact, age and maturity have allowed it to subside a bit. In the meantime – instead of fighting against the behavior, we allow him all the apples he can eat. Trust me, this is a lot of apples. If he HAS to have something in his mouth to feel soothed – well, then I want it to be healthy! We don’t often keep chips or candy around – because he would go for that.

In nearly all of our experiences, I have found instead of arguing it’s easier to just give him a choice – a choice that doesn’t harm him.

It’s just easier that way…for all of us.

 

Day #15 – Fashionista…or Not

My son plays football.  Yesterday he had his second 7th grade game.  He was up and at ’em early in the morning…just like every other morning, really.  There is just an air of excitement on game days.  The morning was ‘normal’ – wake up, come upstairs, say “Good Morning Mom,” kiss mom, check football scores, check fantasy football league, go to kitchen table, ask mom to pour cereal (yes I pour cereal and milk, see day eight…all about proprioception), eat, take bowl to sink, then…here it comes…the great sock and shoe hunt.  I have to believe that the great sock and shoe hunt happens in every home with children.

sx3629-007

 

See those socks?  Those are fancy pants socks (otherwise referred to as Nike Elite) that many ‘child athletes’ wear.  Sure, I’m like most other moms (I really hope) and giggle a bit at these socks.  Really?  My mom bought Hanes socks and I did just fine.  These things are RIDICULOUSLY expensive…but whatever.

We go walking out of the house.  Tucker is a few steps in front of me.  I look down and realize that he is wearing unmatched socks.  They are not only unmatched but one is inside out.  Sigh.  I look to the heavens and say a quick prayer (this is a common theme).  The prayer this time is that kids won’t make fun of him for:

1.  Not having the Nike Elite Socks

2.  The socks he does have are mismatched and inside out.

Ugh.

But NOT a double ugh.

“It wasn’t me. I promise.” Those are words I once repeated to his 1st grade teacher.  As I took Tucker into school and looked down I noticed… his pants twisted, shirt half-tucked, untied shoes, missing a sock, he was a mess. An embarrassing mess.

“I  swear I helped him get dressed this morning.  I promise he did not leave home like that – I really don’t know what happened.”

She looked at me (bless her heart) and said, “I know, don’t worry about it – I know you wouldn’t send him to school looking like that.”

Then we both laughed…because we knew.  Spectrum.

Ho hum…it’s just another thing that sets him apart from his peers. Children on the spectrum often look funny. Tucker often looks disheveled – he doesn’t match, he’s missing a sock, he has paint on his shorts, he has a stain on his shirt. He just doesn’t care, I’ll spend time in this blog referring to ‘social cues.’  He doesn’t get them and sometimes, it’s a huge relief.

Honestly, the most important thing is that he actually has clothes on – and that, often in itself is a triumph. Seriously, many of these children are naked. A LOT. Mine used to be naked 80% of the time, now I at least have him talked into boxers. In our old neighborhood we had a full glass front door and I joked that the entire neighborhood had seen him naked.  He would just stand at that door watching cars go by, kids traveling on their bikes, runners going through the neighborhood….he would watch all of the action completely oblivious to the fact that he was nude!!!  Many children on the spectrum don’t like clothes because their bodies are so sensitive (we’ll have a conversation about tags and socks on another day).

Modesty will most likely never be his strong suit.

He either gets that from his Grandma’s side of the family (you know who you are and you best be laughing right now) or the spectrum.

I’m not sure which.

Day #14 – The Moment.

Tucker used to rock when he was uncomfortable.

Now, Tucker doesn’t rock much anymore (unless he’s SUPER tired or experiencing insane sensory overload).

Tucker’s language was very slow to develop.

Now, Tucker speaks fluently.

Tucker used to have 8-10 goals on his IEP.

Now, we (at times) struggle to keep him on his IEP.

Tucker used to struggle in school, every day.

Now, Tucker does well in school.

Tucker used to have major fine motor issues.

Now, Tucker has nearly perfect penmanship (when he wants ;)).

Tucker used to fall over himself.

Now, Tucker runs and jumps and love to play.

Tucker seems so ‘normal.’

Then…then..wait for it…ahhh…there it is.  The moment.  The moment that you remember that there is definitely something different here.  Definitely something else at work.

At a church council meeting last week a friend of mine was telling me how much she appreciated reading this blog.  She didn’t know there was anything different about Tucker, but when she saw him hanging on me during worship she often wondered what was ‘wrong’ with him.  She’s lovely, and kind, and wonderful – so don’t hold it against her.  I know I don’t – I appreciate the honesty, most of all…because she’s now taking time to learn. Learn about the moment. 

That is how my husband describes Tucker’s ‘version’ of autism – by referring to the moment.   At times it seems Tucker resembles the habits of someone with Aspergers, other times it manifests as SPD (sensory processing disorder).  We’ve decided it doesn’t really matter that much, really.  Really – because what does the label do for him?  He knows he is on the spectrum, we know he is on the spectrum, and the people who love and care for him know he is on the spectrum.  The thing about the spectrum is that EVERY child is so different.  God Bless Special Education teachers…

I’m trying hard not to digress on that thought – but seriously, those teachers have a VERY special place waiting for them someday.

A friend of mine stopped me last week and I was telling her about my writing, and more about Tucker. I was specifically telling her about this post and how sometimes having Tucker is so difficult.  She said, “So…people probably just think your kid is a shithead.” Yeah, that’s probably about right.

It’s also the source of  immense frustration and tears. My Tucker. The one I see at home – in a calm, comfortable, familiar environment – he’s a gem. He’s polite. He’s kind. He’s helpful. But, get him in a place that is not comfortable, familiar, and calm – and he, well…becomes someone else. That is the moment.  His entire team (AEA folks, teachers, special education teaches, parents, his sister, his friends, his friends’ parents, etc.) supports him, cares for him, loves him.  His entire team has assisted him in making the progress he has made – it’s why it’s not so obvious anymore.  Except in the moment.

That is just one way I knew something was going on. I HATED taking him places because the moments happened so much more often. My parents always said that you knew you were raising your child right if they behaved around everyone else, but not you. Well…Tucker is the opposite. Why? You know, I don’t know. But I know it’s true.

That’s the thing about Autism…there is so much that you don’t know, that you can’t explain – but that you know and can explain.

Day #13 – Thomas, Percy, Gordon, and Tucker

Bring up Google and enter the search terms, “Thomas the Tank Engine an Autism”  you will get over 68,000 results.  Granted I haven’t looked through all of them…but from my own personal experiences I can tell you that there is something there.

DSCF0852

This is Tucker on the last day of having Thomas and friends on his wall (he decided he was too old for Thomas – so instead wanted a gigantic Viking helmet).

Tucker and Thomas – they were always quite the pair.  It was about the only thing that would get him to calm down enough to take a nap.  If I needed a mom break, I knew I could always count on Thomas. Tucker wasn’t enthused about Bob the Builder, Dora the Explorer, Blue’s Clues, Arthur, or Dragon Tales – but Thomas?  That was a different story.

So, what was it about Thomas?

  • I think that the facial expressions were ‘easy’ to navigate and there never was much confusion about how a train was feeling.
  • The ‘filming’ of Thomas was consistent, it didn’t move around a lot. If you watch Thomas you will find that the background doesn’t move.  The only thing moving is the train – so the movement is easy to follow.  I also think this is why Tucker LOVED Scooby Doo, but not the new Scooby – the Scooby from the 1980’s that I grew up on.  Slow, one camera, methodical…
  • He loved to line things up – and still does.  His room is rarely messy.  He would lay his head on the floor to make sure all trains were in an exact line.

“In June and July 2001, The National Autistic Society conducted a survey of 81 parents of children with autism and Asperger syndrome to investigate their putative ‘special relationship’ with Thomas the Tank Engine. The survey confirmed our assumption from anecdotal evidence that children with autism spectrum disorders associate far more strongly with Thomas the Tank Engine than with other children’s characters. (http://www.autism.org.uk/about-autism/our-publications/reports/our-policy-and-research-reports/children-with-autism-and-thomas-the-tank-engine.aspx).”

The results were fascinating and helped to put words into what I had always known.  See the report here:  http://www.autism.org.uk/about-autism/our-publications/reports/our-policy-and-research-reports/children-with-autism-and-thomas-the-tank-engine.aspx

Two months ago we were at my mom and dad’s house and there was ‘nothing’ on the television (as reported by my children).  I went outside to get a movie and when I returned I found Tucker watching Thomas.  I stood in the doorway and watched.  He was sitting (at age 12) on the edge of the chair watching with the same intensity he had watched for so many years. It was like he was transported to his four-year old self – laughing at Percy being cheeky, scolding Gordon for being grouchy, and smiling from ear to ear when Thomas saved the day.

On more than one occasion Thomas saved my day…so I’ll ever be thankful to the Island of Sodor.

For more information about the link between Thomas and Autism see the following writings:

  • NSW: Thomas the Tank Engine turns teacher for autistic kids. (n.d). AAP Australian National News Wire,
  • MacRaer, F. (2007, July 25). HOW THOMAS GIVES THE AUTISTIC AN EXTRA PULL. Daily Mail. p. 3.
  • (2002). Thomas takes autistic children down new learning tracks; CHILDRENS’ TV: Classic character’s friendly face and simplistic approach helps children’s early development. Western Mail (Cardiff, Wales).
  • Thomas & Friends characters ranked top toy by parents of children with autism:survey. (n.d). Canadian Press, The,

 

Day #12 – My Emoticon

He may come by it naturally – I don’t feel in moderation. I feel everything in intensity, and I wouldn’t want it any other way.

Tucker feels. He feels strongly. Sometimes he has difficulty controlling his emotions. When he laughs it’s like a choir of angels singing. When he cries – he still throws his head back and lets it out. Tears, still the size of dragon tears, will roll down his face. I’ve done a lot of thinking about this one. Does this really have to do with being on the spectrum or just being my child?

It’s a double whammy for him (now triple that he is entering puberty :/).  Children on the spectrum often have emotional outbursts due to their hyper sensitivities to their sensory-filled environments.  They not only feel at a different intensity, but combine that with their added vulnerability and whammo!  You have a child who is often so overcome by emotion they cannot make decisions or deal with everyday ‘normal’ occurrences.

When he was a toddler he would become so distraught that he couldn’t see his way out.  So, we started reading books about emotions.  I started to point out the faces of others on the page.  We talked at length about how the characters were dealing with their feelings.

Some of our favorite books included…

Angry Bird by Jeremy Tankard.  This story was Tucker’s absolute favorite.  It tells the story of an Angry Bird who, with the help of his friends, finds happiness.

When Sophie Gets Angry – Really, Really Angry by Molly Bang

How Are You Peeling? by Saxton Freymann

If You’re Angry and You Know It by Ceclily Kaiser

My Friend is Sad by Mo Willems (Elephant & Piggy SEries)

Llama, Llama Mad at Mama by Anna Dewdney

As he got older we used social stories (in conjunction with his teachers).  Social stories are stories developed with Tucker as the main character.  This way he could read about and view his ‘correct’ emotional response to something that set him off, these social stories taught him how to ‘get out’ of his emotional prison.

As I’ve aged (and Tucker too) I realize that much of the work we did with him controlling, naming, and redirecting his emotions has helped in a variety of ways.

Obviously, the number of complete emotional outbursts has declined significantly.  He’s able to name a myriad of emotions – from frustration, to jealousy, to sadness.  In fact, he may be more adept at naming, controlling, and reestablishing his emotions than many adults.

Regardless, I think about how far we’ve come – and how far we have yet to go.  Or maybe not.  It reminds me that we are all on the spectrum. Somewhere. Somehow. The difference is that most of us are able to control our tendencies, especially in public. We are able to hold it in until we get to the car, our bedroom, the shower. But, you know – maybe this isn’t good. Maybe if we were all a little more real and present in our emotional’ness like children on the spectrum we wouldn’t have so many folks in our world walking around with so much sad, so much anger, so much hurt.

Why? Because they would have let it out…and allowed friends, neighbors, and relatives to surround them with love and support.

So, go ahead – let it out…just like Tucker does.