Day #145 – Movie Day

Today is movie day.

It’s movie day because a friend of Tucker’s asked him to stay overnight.  It’s the second time (ever) that he has stayed over night anywhere (besides a grandparent’s house).  That’s big news.  The first time he stayed there he was planning on staying until 9 PM.  I received a text at 8:30 asking if he could try to spend the night.  I’m glad he didn’t call…because I began sobbing (we really should buy stock in kleenex).

I know it seems silly – but when your child makes a ‘neurotypical’ stride…it’s big.  Really big, actually.

I responded, ‘Of course.’
He replied, ‘But if I need to come home in the middle of the night you will come get me right?’
I responded, ‘Of course.’

So, here we are, Estelle and me.  On the couch – an opportunity to be alone with her and love her up in all the right ways.  A chance to watch movies – to really be able to watch them (of course after I finish this post) without worrying about Tucker’s reaction.  Reaction to the sounds. Reaction to the video.  Reaction to the emotional nature.  Reaction to us taking up ‘his’ space. Reaction to messing with his daily schedule. Reactions…

Sometimes we all need a break and I’m OVER THE MOON that he not only has this friend – but that this friend’s mom works hard at ‘getting’ Tucker.  She knows and she tries so hard – she gets that I don’t necessarily want special treatment, but I do want people to try to understand Tucker.  She does just that.

Back to the movies…

We’re about to watch The Maze Runner. Why is this a big deal?  Tucker is not a movie guy.  When I say he is not a movie guy, I mean he is NOT a movie guy.  To get him to watch a movie  we must go to the movies, and bribe.  With large popcorn and extra butter.  With caffeinated beverages.  With Junior Mints.  With promises of outside seats and available earplugs.  I recognize that going to the movies presents significant sensory overload, but that is only part of the puzzle.

The larger piece to the puzzle is his inability to recognize fiction from non-fiction.  So much so that during Transformers he turned to me and said, “Now mom….this movie is…well…you know – it’s not real right?  It’s fiction?”

This is one of those moments that you hold in your giggle and smile at his innocence.

“Right Tucker, it is fiction.  This is not a true story.”
“Well, I thought so – but I just needed to check because if our Suburban turns into a robot I wonder where I would go.”

Well…I hadn’t thought about that!

Part of his clear dislike of fiction has to do with his inability to lie (see Day #144 – Divine Lies), his inability to understand sarcasm and metaphors (see Day #17 – Say What You Mean, Mean What You Say), and his absolute disdain for fiction in general (see Day #79 – I’m Not a Turkey).  I think it’s safe to say that this is a pattern.

Instead of being frustrated with him I try to think about it from his viewpoint…

What is the point of reading or watching something that isn’t true?
Shouldn’t everything I watch or read teach me something?
Otherwise, what is the point?

The teacher is me says, right on!  The artist in me says, no way dude.  Just some more internal confusion to try to sort out.

So, Stelli and I are going to sit here and watch movies the rest of the night.

After The Maze Runner we’re going to watch Pirates of the Caribbean and then Harry Potter.  It’s our chance to get out of Tucker’s world…even if just for a night.  We’ll get our break and be ready to storm around him tomorrow (see Day #105 – Eye of the Storm).

But tonight?  It’s a rare occurrence that it gets to be about her.  So, tonight’s blog will be cut a bit short because it IS about her, some orange pop, buttery homemade popcorn, make-believe stories, and Captain Jack Sparrow.

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Day #144 – Divine Lies

Have you ever tasted divinity?  Divinity in itself is a fluffy, creamy candy made from egg whites, sugar, corn syrup (aka liquid sugar), and vanilla.  It’s what I imagine a sugar cloud tasting like…but boy, oh boy is it hard to make…kind of like Tucker telling a lie.

It was actually one of the very first indicators that we knew something was different.  His preschool teacher contacted me with her concerns about Tucker.  Her first concern?  His inability to tell a lie.  Apparently he broke something.  When she asked the class the fateful ‘Who dun it?’  He raised his hand. “I did.  I broke it.”  It didn’t take any coaxing, any threatening, and it took less than 15 seconds for him to fess up; this admission of guilt wasn’t a one time thing.

I know, seems silly right?  That not being able to lie is a concern? Only it’s not silly  – not at all.  Telling a lie is actually a cognitive milestone.  Lying is a signal that you can understand what others are thinking and the consequence(s) that may go along with those thought(s).

Stop-Telling-White-Lies-Step-4

Contrary to what I originally thought – his inability to lie had nothing to do with my stellar parenting (insert laughter here).  I taught my children if they told the truth I would never get angry.  Nope…had nothing to do with me and everything to do with the ‘theory of mind.’  The theory of  mind begins to develop around age three – the time when language development and the ability to control mental skills intersect.  Tucker was four and a half.

In a 2001 research paper, Simon Baron-Cohen describes Theory of Mind as “…being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds.” (If you are kind of nerdy like me, here is a link to the article:  http://docs.autismresearchcentre.com/papers/2001_BC_review.pdf)

There are two sides to that coin:

  1. Most individuals with autism have difficulty understanding that other people have their own thoughts, feelings, plans, and point of views – this is just one of the reasons that ‘winning’ an argument is nearly impossible (that will be covered in another post).
  2. On the other hand, they also assume that others know their own thoughts, feelings, plans, and point of view(s).

Deficiency in Theory of Mind can create major barriers to communicating and forming relationships with others.  We, as NT’s, (see Day #35 – I’m a Neurotypcial) may see the person as lacking empathy or kindness.  That is not necessarily true.  Tucker is one of the most empathetic people I know.  While watching the opening scene in Guardians of the Galaxy, Tucker began walking out of the movie theatre.  I caught up to him as he got to the concession stand where he yelled, “Any movie that begins with a boy’s mama dying is not worth watching.”  How do I argue against that?  (a box of candy worked, and he eventually loved the movie)

This is not a post about empathy though – that will come on another day.  This is a post about the inability for Tucker to recognize there would be anything to tell but the truth, regardless of someone else’s feelings.  He takes information for what it is…and cannot recognize that there is always a ‘context’ involved in communication.  An example:

During the DARE program at school he came home and told me we really needed to talk to his dad about his drug use.  WHAT?!?!

I mean, we hadn’t lived together for a couple of years…but I couldn’t imagine or believe his dad was using or abusing drugs.

I asked more questions…I finally realized that Tucker was referring to nicotine in chewing tobacco.  Go ahead – laugh, because it is funny.  The DARE officer referred to nicotine as a drug (which it is), so Tucker easily made the jump between nicotine and say, heroin.  Drugs are drugs.  All are equally bad.

It seems being on the spectrum doesn’t allow for a ‘spectrum of thinking.’

Yes or No

This or That

Right or Wrong (according to logic)

It does help in our ability to parent.  Often we make ‘rules’ in an attempt to help him assimilate.  Remember Day #138 – The Red T-Shirt?  It’s our newest rule.  Only gray or black shirts can be worn under a uniform.

This morning when he was getting ready for school?  “Mom, don’t forget I have to wear a gray or black shirt under my jersey, it’s a team rule.”

Now…just hoping that another boy doesn’t wear a white or yellow shirt…then I’ll have to have a conversation about how it’s not Tucker’s job to enforce the rules. If it’s not one thing, it’s another.

Sometimes parenting Tucker reminds me of making that divinity.  It has to be a day with the right humidity, right temperature, right syrup consistency, and a whole lot of time and patience.  It’s about having the courage to throw it out after spending time and energy or taking the time to simply treasure the sweet results.

He’s worth it though…always worth it.

Day #143 – The Funny of the Naughty, Part 2 of 2

(Continued from Day #142 – The Funny of the Naughty, Part 1 of 2)

The final (and possibly worst) instance.

The house had been clear of any squirting instances for some time.  I really thought we were in the all clear.  We were shopping in Wal-Mart for supplies to create his new Thomas the Train mural.

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He was sitting directly in front of me in the child’s seat in the shopping cart.  As we walked around I turned because I heard an odd noise.  I saw blue paint on the floor.  I thought to myself, “Goodness, someone better pay attention and get that cleaned up, that could cause an accident…and blue paint on your shoes?  Someone is going to get mad when they get in their car.”

I kept on walking.  Of course Tucker was still not really talking, so I continued to talk over and above him about things I saw, things I knew.  I always thought if I could just fill his world with me talking he would pick it up (sure enough, he did…now we often can’t get him to stop talking).

I felt my shoe squish.  I looked down.  On my khaki paints?  Blue paint.  I look at Tucker.  He has a blue bottle of craft paint in his hand, turned upside down. Squeezing, looking directly at where the paint comes out.  Smiling at the paint.

At some point he reached into the cart and retrieved this colorful blue bottle.  He removed the plastic cover and had been squirting it on me and the floor since the craft aisle.  That was an entire store ago.

I quickly paid for my things and left.

I got to the car and called my dad.  He laughed and said, “Dearest daughter, you have choices in life.  Always choose the choice that makes you happy.  What are you going to do about it?  Nothing.   It’s done.”  Then, I began laughing.  Hysterical laughter.  It was a life changing moment for me. I knew there was something going on with my son and I also knew that I would need to laugh, a lot.

What does all of this mean?

It means that he likes to view things from different angles.  It means he likes to see how things work – up close and far away.  It means he likes to understand a certain cause and effect on something concrete, “If I push this button, the Tide comes out.”  “If I squeeze this bottle, syrup (and paint) comes out.”

This is important because it’s the creative nature of how his brain works.  He views things from different angles and can often see relationships that others cannot.

The result?  One day during worship he wrote the alphabet..

A
B
C
D
…and so on…

Then he wrote the letters upside down.  Each letter beside the original.

Then he wrote each letter facing left. Each letter beside the upside down, beside the original.

Then he wrote each letter facing right.  Each letter beside the left side letter, beside the upside down, beside the original.

He continued until he had four columns of letters – all from a different perspective.

Yes – it’s bizarre – but I happen to think it’s also AWESOME.  It adds to the mystery of knowledge.  He is better able to understand the world from a variety of perspectives and it leads to his ‘outside of the box’ thinking. What are the greatest inventors (Edison, Franklin, Bell, DaVinci, Galileo, Jobs) if not outside of the box thinkers?

This is why in the midst of the moment when autism is frustrating me I try to focus on how exciting autism can be.

A new perspective, a new thought, a new invention…all from minds that focus on new and different.

I just wonder what he will offer, what will he see in his lifetime that we (as neurotypicals) cannot?  What will he add to the world?

I’m positive it will be wonderful and just case you are wondering…the khaki’s did not come clean.

Day #142 – The Funny of the Naughty, Part 1 of 2

In Day #112 – Lifelong Learning I commented a bit on how Tucker would watch television by staring at the reflection in the window.  He would also watch television upside down on the couch. Why is this?  It’s about visual stimulation.

Many children with autism like to look at things from different angles.  They will get down on the floor to look at the wheels turning on a car.  They will lay underneath things to see what something looks like from underneath.  They will look closely at something and turn it over and over in their hands.  They will look out of the corner of their eye – anything to create a bit more stimulation.

In my house it’s been one of the more challenging aspects.  Why?  They can be (as Tucker was) obsessed with things that drip.  To be very honest, I didn’t know that this was a ‘thing’ as it was happening…but now it all makes sense.  You know, that hindsight is 20/20 thing?

The first instance.

When Tucker was three (and before he was identified) I found him in the laundry room.  He was the same height as the dryer (yes…always, always tall) and his back was towards me. Do you see this bottle of Tide?

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This bottle of Tide was sitting on the dryer with the spout ‘down.’  I assume that is how most people would set their huge bottle of Tide?!?!  Tucker was standing beside the bottle, his eyes fixated on the Tide coming out of the spout and onto the floor.  It was a new container. Do you have any idea what 170 ounces of blue Tide looks like on the floor?

Like a shiny ocean.  Obviously, I was trying to get myself to imagine something wonderful instead of the very real mess.  I was lucky to teach college students – one of the young men in my class worked at a grocery store.  He told me to buy some kitty litter, that would soak it right up.  He was right, thank goodness.

That was the first instance and I figured the last, a fluke.  I didn’t know why he did it – but he was three.  I knew it was strange even for a three-year old…but oh well.

I chalked it up to toddler hood.

And then…

I was working part-time teaching and filled my ‘home’ time with a grant-writing business.  I put Tucker down for a nap – which was generally a 90 minute ordeal that often left me black and blue – but I kept on until he was asleep.  I walked out to the living room and sat down at the computer to write.  Upon opening the filing cabinet drawer I noticed my files were sticking together.

Upon investigation (and smelling my fingers and files) I realized that a certain three-year old had removed the maple syrup from the bottom shelf of the refrigerator and squirted it all over my files.  I slowly, but surely turned around.  You know that kind of ‘turn around’ that happens in horror movies?  That’s when I saw glistening sugar circles all over the couch, chair, and quilt rack.

I had worked 90 minutes to get that child to sleep, there was no way I was going to wake him and address the syrup issue.  When he woke I asked him why he did that…of course he couldn’t answer.

Ian Fleming, a famous author, (he wrote some measly series about a guy named James Bond) once wrote, “Once is happenstance. Twice is coincidence. Three times is enemy action.”

Enemy Action.

By this time I was getting MUCH smarter, I kept the door to the laundry room shut.  I kept an extra ear out for refrigerator opening.  Never trust a three-year old…moreso never trust a three-year old obsessed with watching things squirt out of bottles. It was bedtime.  I had Tucker clean and in jammies.  He was finishing his ice cream as I went to check on his sleeping infant sister.  When I returned he had the chocolate syrup bottle in front of his face, he was intently watching the syrup comes out in a loopie loop pattern all over our light gray carpet. Awesome.

By this time – I knew it was an issue and I wasn’t about to lose to the ‘enemy.’  Anything that had any type of squirt, spout, or spigot was put far, far, far up.  I knew this was something he could not resist.  I knew this was something that I could not stop him from doing – so I just removed every opportunity.  I knew at some point he would be old enough to recognize that it was wrong.  Certainly, I had won the war.

Or had I?  Read tomorrow to find out…

(Sorry…I try really hard to keep these posts between 500-800 words so they are a ‘quick read.’  Therefore, you will have to wait until tomorrow.)

Day #141 – An Ode to the Farmer

A sort of response to yesterday’s post (Day #140 – A Different Type of Loss) about grandparents.  Tucker has a bond with my dad that goes beyond his middle name.  It’s something deeper – an unexpected, atypical connection. A version of this blog will be featured in the March issue of Wallace’s Farmer.

According to the latest statistics from the CDC about 1 in 68 children have an Autism Spectrum Disorder (ASD).  In the 1960’s when my dad was in school the rate of autism was 1 in 10,000. At this rate the rate of diagnosis will be 1 in 2 by 2025. Plenty of researchers are trying to give meaning to the increase, one of which is increased diagnosis and wider spectrum of what is classified as an ASD.

The characteristics of autism naturally lend themselves to success in farming. As I began writing, I saw my father in my son’s experience. The more I write, the more I understand both of them. The more I understand them, the more I understand the history and future of the spectrum. At Thanksgiving this year I made the bold statement to my father, “You know, if people would have known about the spectrum you would have been diagnosed.” He nodded, silently (as usual).

Last week he called, “I read your blog every day. Every day I find something about Tucker that can I relate to. Remember when you said you thought I was on the spectrum? I think I am or I was…or both.”

Now, I am not a Doctor or a Psychologist so I don’t mean to say whether he is or he isn’t, although many of us in the world believe that we are all on the spectrum to some degree. This was exciting to me. Why? Autism is not necessarily a devastating disease or condition. Autism makes people different, not wrong. It simply changes the way people process information.

Consider Temple Grandin – she has autism and changed the way we handle livestock. She developed restraint systems that keep animals calm and prevent them from getting hurt. I once read that she actually entered the chutes and ran herself through the systems in order to see what an animal would see. She was able to translate that knowledge into what would calm her; therefore, what would calm the animal.

My primary goals for my son are to make sure he has a full understanding of what autism is, what that means for him, and how to advocate for himself. What if 50 years ago people would have understood autism as we do now?

My dad may have realized that part of autism is having a hyper-focus on something. He never stops working, thinking, or talking about farming – he would have known that he was okay.

He may have realized that part of autism is having amazing attention to detail. He knows everything and anything about his farm – he would have known that he was okay.

He may have realized that part of autism is experiencing sensory overload. He hates being in environments where there is too much conflicting noise – he would have known that he was okay.

He may have realized that part of having autism is having a significant speech delay. He didn’t talk much before Kindergarten – he would have known that he was okay.

He may have realized that part of having autism is treasuring alone time. He thrives in his lonely combine, tractors, and parts runs – he would have known that he was okay.

He may have realized that part of having autism is a significant strength in visual knowledge. He is always putting things together, imaging what things look like; always describing things in visual terms – he would have known he was okay.

He may have realized that part of having autism is the inability to express and/or recognize feelings. I can’t remember the last time he said, “I Love You.” Trust me, I know he loves me by his actions – and I hope he knows that I know. It’s okay, dad. Really, I get it now. (I also recognize some of this is generational…)

All of those things are true about my father – and so much more. He’s not so much different than my Tucker or so many others on the spectrum. I don’t think any of those are negative traits – in fact, I would say they are some of the best traits on earth.

He is a successful farmer and maybe it’s due to spectrum-like tendencies. How many farmers do you know that like to retreat to the shop, to spend time with their animals, to be precise, and take immense pride in their work? Maybe autism is the very nature of what it means to be a farmer.

During the summer I often sit on my front porch at look at the lush Iowa landscape – blue skies and green fields as far as the eye can see.  In these moments I feel so connected to the earth. The land that bears fruit is such an important part of my past.  As I look to my right and hear the basketball on the concrete driveway I contemplate the future.  There he is. My son, the grandson of two farmers, the great-grandson of four farmers. He has autism and autism or not…he is also some of the best stuff on earth.

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Day #140 – A Different Type of Loss

So what can all of that sensory over/under stimulation cause? Many children (including my own) experience this sensory over/under load and can lead them further onto the spectrum.  In short, the difficulties they experience lead them to have behaviors more closely related to Asperger’s or ‘Classic Autism.’

This is just one reason we work so hard to keep Tucker’s sensory difficulties at a minimum.  When he struggles to sort out and make sense of the input he runs into even more social, emotional, play and self-regulation issues.

I knew I had to write about this after last night.  My parents came to visit.  Trust me, I LOVE it when they come to visit.  I’m always sad when they leave and often think about stealing their keys so they are forced to spend the night.  I don’t live that far away (a little over an hour), but I certainly don’t get to see them enough.

Like any parent you want your child and your parent(s) to have a wonderful relationship.  Some of my fondest memories involve my grandparents.  Last week an editor contacted me to write a small article about autism for his magazine.  His message included a lengthy explanation of knowing (and having fond memories of) my grandparents. As I read it, I sobbed – couldn’t even get through it.  My poor husband was trying to make sense of the words between my sniffles and gasps.  I was so touched and all of my memories with them became flooding back.

I was reminded of making pies with my Grandma, riding with Grandpa in the combine, eating peanuts and candy corn, always having Cap’n Crunch and Tang for breakfast, eating carrot’wiches, Grandma reaching things on high shelves with knives, Grandpa spraying us with the garden hose whenever possible, wrapping presents and decorating their tree, eating in front of the television, and most of all the comforting tick-tock of their clock on sleepover nights.

Truly the emotional impact of love and loss within five minutes – sometimes that is a tough one to bear. Also one that comes unexpectedly, yet often when you have a child on the spectrum.

When Tucker’s grandparents left I looked at the list below.  It held new meaning.

“The child does not seek out connections with familiar people.”

I want so badly for my parents to have the connection with him that I had with my grandparents.  That relationships is so valuable, so special, so important.  So impossible…for him.  Yes, he loves them – and they love him right back – but it will never be what I had, what I remember.

I had to remind him three times to come out and be with them.  I had to remind him to tell them good-bye.  This was nothing new.  Anytime we are around those who are familiar he rarely engages.  Even when friends come over.  He may engage for a few minutes, then he checks out.  I try so hard to force something that should naturally come, the way it comes for my daughter.

It won’t come though, through no fault of either party. Regardless, the lack of fault does not deny my right to mourn that loss.

The loss that Tucker won’t have the multitude of warm memories that bring a smile to my face.

The loss that my parents don’t have the more typical bond with their grandson.

It is what it is.

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From http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html:

Social:
_x_ difficulty getting along with peers
_x_ prefers playing by self with objects or toys rather than with people
__ does not interact reciprocally with peers or adults; hard to have a “meaningful” two-way conversation
__ self-abusive or abusive to others
_x_ others have a hard time interpreting child’s cues, needs, or emotions
_x_ does not seek out connections with familiar people

Emotional:
_x_ difficulty accepting changes in routine (to the point of tantrums)
_x_ gets easily frustrated
_x_ often impulsive
_x_ functions best in small group or individually
_x_ variable and quickly changing moods; prone to outbursts and tantrums
_x_ prefers to play on the outside, away from groups, or just be an observer
_x_ avoids eye contact
_x_ difficulty appropriately making needs known

Play:
_x_ difficulty with imitative play (over 10 months)
__ wanders aimlessly without purposeful play or exploration (over 15 months)
__ needs adult guidance to play, difficulty playing independently (over 18 months)
_x_ participates in repetitive play for hours; i.e., lining up toys cars, blocks, watching one movie over and over etc.

Self-Regulation:
_x_ excessive irritability, fussiness or colic as an infant
_x_ can’t calm or soothe self through pacifier, comfort object, or caregiver
__ can’t go from sleeping to awake without distress
_x_ requires excessive help from caregiver to fall asleep; i.e., rubbing back or head, rocking, long walks, or car rides

Day #139 – Cast Your Net

After doing quite a bit of reflecting over the past couple of weeks – I have decided to ignite a challenge.  A challenge to all who read this blog.

The first bit of reflecting came from the most publicized blog post (#42 – The Trouble With Peers).  It was reposted on The Mighty, Autism Speaks Website, and Godvine.  All in all – I stopped counting this week when I realized it had more than 20,000 hits.  I was amazed – I knew it was a great story – but I was amazed at how many people contacted me and said,

“That is my child.”
OR
“That was me.”
OR
“That is my grandchild.”

Or some version of that sentence.  You know what?  It made me sad.  It made me sad that there are so many people in our world that feel or have felt that they are not part of a group.  For the record, you can ALL be in my group.

My second piece of reflecting came this week.  I stood up to some folks and brought an inequality to light – I was amazed at how many people contacted me and said,

“That is also my child.  Thank you for saying something – even if it doesn’t make a difference.”

One woman contacted me and said, “It’s a big machine and you have more supporters than you think. Everyone is afraid standing up against it will have adverse effects on their kids. That’s why they stay quiet. I would LOVE to see someone do something about it and I guarantee a lot of people will come out to support them.”

What?  Since when did we become afraid of standing up to a person or small group of people who impose inequality on other people?  When did we become so apathetic that we are not willing to stand up to ONE person?  ONE.

I also have a teaching blog that is on hiatus now (seriously, who would have time to write two blogs). All of this reminded me of a blog I wrote a couple of years ago and for the third time, I reflected.  I asked my students to write a personal essay.  In that essay,  nearly all admitted that they were ‘nerdy’ or ‘weird.’  It struck me as funny, because I didn’t think any of them were nerdy or weird.

I reassured them that it is okay to be who they are.  They looked at each other as I told them that they, collectively, held many of the same fears.  They smiled at each other.  I asked them to tell me about why they felt afraid to share their ‘true, authentic’ selves. They opened up…it was one of those moments as a teacher when you realize what you WERE going to teach is not nearly as important as what you are ABOUT to teach.

Nearly all of them expressed their relief at coming to college.  They finally felt comfortable to be who they ‘really are.’  I asked what had stopped them.  They really didn’t have an answer…and then, one student piped up. “Although I don’t really know, I know I didn’t want to be made fun of.  So I just did what the people who made fun of people expected me to do. I became who they wanted me to be.  But the whole time I was really miserable.”

I responded, “Okay.  So, these ‘bullies’…tell me…how many were there?  How many of the students dictated who it was ‘okay’ to be?”

“I don’t know…two…maybe three.”

‘How many students were in your class?”

“85”

“So…let me get this straight.  82 of you pretended to be something you were not to please 3 of your peers?”

They nodded.  Let me tell you.  ALL of them nodded…and it opened the floodgate.  It opened the gate to talk about mean people.  Why is it that mean people win?  I’m so sad when I can’t answer their questions.  So…it’s one of those moments that you have to talk about grace, forgiveness, kindness, and compassion.  It’s the same discussion I have with my 10 and 12 year old.  It’s the same discussion I have with my husband – and the meanness that we encounter as adults.

I have no time for it and I certainly don’t waste much of my positive life and energy focused on those who choose to be mean.  Truly – and I told my students…don’t hold on to hate.  Allow yourself to forgive.  Never allow your words to be full of vitriol.  Think about your own suffering when people are hateful towards you, don’t put it out there in the universe. You get what you give.  Give hate and anger; receive hate and anger.  Give love and forgiveness, kindness, and compassion; receive love and forgiveness, kindness, and compassion.

Then, this morning during worship I knew what I had to write about.  Nets – the casting of nets to gather others.  For the fourth time in the past week I was thrown into a deeper reflection. This metaphor is used often in describing the gathering of something.

So, I challenge you during the coming week – throw out your net.

Your net of love.
Your net of forgiveness.
Your net of kindness.
Your net of compassion.

What if the 20,000 people who read that blog post threw out their net?

What a difference we could make.

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Day #138 – Red T-Shirt

Yesterday a colleague of mine stopped me to tell me she had been reading my blog.  She read my pity party blog (see – Day #136 – From the Heart) and wanted to be sure that I knew I could always stop by to talk, if needed.

We talked, we shared, we laughed.

What struck most me was her laughter.  Her really wonderful laughter.  She may not know it – but I left her office feeling refreshed, uplifted, and joyful.

We talked about social cues and how Tucker doesn’t compare or pay attention to what others are doing and how that’s really pretty wonderful.  There is a part of me (actually, a ginormous part) that wishes more of us could be like him.

She told me about her son and how that week he dressed himself for school.  He came out of his room in a completely mismatched fashion.  She told me she just shook her head and thought that it wasn’t worth the battle, not one bit.  We laughed – and I said, ‘The only difference between us is that your son is 4, mine is 12.”

Tucker is on the 7th grade basketball team. Our school colors are black, gold, and white.  For his first game he came into the gym wearing his ‘issued’ jersey and his Vikings shorts.  Yes – my child.  The only one not wearing black or gray shorts.  There he is – purple and yellow shorts.

I felt my face flush.  I looked at the other parents – contrary to what we often think – no one cares near as much as ourself.  He looked at me; then winked, smiled, and nodded.  He was having a great time.  I was trying to remind myself that it wasn’t a big deal…but that I would need to somehow get him into black shorts.

When I asked him about it after the game he responded, ‘Those are my favorite shorts.”  I began to say the infamous, “….but do you see anyone else….”  I stopped myself, just in time.

He doesn’t see anyone else.  He just doesn’t.

Sometimes I ask Tucker questions about life just to see how he perceives his surroundings, relationships, and events.  Thursday morning I asked him if he knew what it meant to be jealous.  He said, “Yes.  It means you want something that someone else has.”

I asked him if he ever gets jealous – and assured him it was okay to tell me.  He responded, “No.”  I said, “Not even when you sit on the bench and watch the other boys who play basketball?  The boys on the A team?” (He’s on the C team.)

He responded,  “No.  Why would I?”  I didn’t have an answer, but in mom style I kept on prodding.

“What about the kids in your class who do really well at school.  Do you ever wish school was that easy for you?”

He responded, “No.  Why would I?”  I didn’t have an answer, but in mom style I hugged him.

Just to be sure, I asked my 18-year old bonus son the same question.  He responded with a list of people that he is jealous of – not in an awful way – but just in a ‘wish I could play like that’ way.  I told him the story about Tucker.  He shook his head, laughed, and said, “What?  Really?  I mean that’s cool…but yeah, that’s odd.”

It can be hard for children with autism to put themselves in someone else’s shoes, Tucker simply doesn’t even realize that people have different shoes.  His world is his only experience to draw meaning from.

So, what about those shorts?  He’s now wearing black shorts and black socks.  Instead of referring to what the other kids were wearing we had to talk about ‘uniforms and rules.’  The rule is that you wear a uniform. Why?  Because as a team you should all look relatively alike.

Once it became a ‘rule’ I had to go out and buy new all-black shorts.

At the next game?  Black shorts, black socks….and a red t-shirt under that jersey.

I told my colleague this story and she laughed…a lot.  She replied, “You know – if only more of us could feel as comfortable in our own skin to just wear whatever and be who we are.”

Just a simple reminder that it’s all about baby steps…next?  Take care of that red t-shirt.

Day #137 – Yyyyyeeeoooouuchhh!!!

Ouch.  Children on the autism spectrum can have a CRAZY high pain tolerance.  In some ways that is good because of the ‘crashing’ (See Day #11 – Crash Into Me) or their tendency to repeatedly bang their head on the floor, wall, couch, chairs, table, etc.  They can bounce off things and fall – but they don’t often complain about hurting.

This can also be incredibly dangerous.  They may have something really, really wrong – and you may never know.  The summer between Tucker’s 2nd and 3rd grade year I was riding on an organized bike ride in our community.  This was a special treat because it was during the day.  It’s a rarity that we could ever have sitters at night (yes, having the spectrum has a direct effect on your dwindling social life).  One of his favorite sitters was staying with him and his sister.  Finding sitters that you trust to stay with your children is always a challenge – that challenge is magnified for children on the spectrum.  We have had three sitters in his 12 years that I have really trusted. That’s a subject for another post…

I arrived home and she told me that he was laying on my bed.  He had tripped over something in the back yard and had a cut on his ankle.  I knew immediately that it was probably worse than described.  I kindly paid her and she went on her way.

I went into my bedroom and he was calmly watching Spongebob on television.  I turned it off and asked him what happened.  He said, “I was running and tripped over the garden row maker.” I knew that meant a shovel or a hoe.  I told him to stay still and went outside to find this lying in the backyard.

Triangle-hoe

 

Yes – the triangle hoe. I rushed back inside to find him still calmly laying on the bed.  I pulled back the ice pack.  Oh. My. Goodness.

Now – here is where it gets tricky for parents.  I COULD NOT get angry at the sitter.  He told her it was fine – how was she to know?  She flushed water over it, put a cold rag on the wound, and then put on an ice pack.

Be warned – this is going to get gross.  He had a 1 1/2 inch gash on the inside of his ankle – you know where there isn’t much fat or muscle?  The injury was 3+ hours old. I rinsed it again.  It was too old to go the ER.  I got him a popsicle, turned up Spongebob; and proceeded to pick out pieces of sand, grass, and soil from inside of the wound.  Gross.  Yes, I picked this out with a tweezers.  No doubt, this should have been a trip to the ER.  Most children would have been screaming. Tucker?  Nope, he just laid there asking me in a calm voice if I was done yet so he could go back outside and play.

Now, of course we have a double-edged sword.  He doesn’t recognize if something really does hurt and may overreact at getting bumped in the arm.  So, if you are around when he gets hurt and I go running or I continue to ask him – know that I am not being overbearing.  Instead, please understand that I am trying to make him really think about if he has pain or not – because he won’t often recognize it on his own.

From the checklist on:  http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

_x_ is not bothered by injuries, like cuts and bruises, and shows no distress with shots (may even say they love getting shots!)

For more information on the tactile (touch) system, see:

Day #136 – From the Heart

****TEARJERKER WARNING****

Every once in awhile I have to post something straight from my heart.  No matter how painful.

There are days when I feel like I should wear this t-shirt.

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Available at http://teespring.com/autismmomninja

Then there are days like yesterday.  Days where I feel very defeated – and not because of anything in particular.  This is going to sound like a ‘poor me’ post – but sometimes we all have to go there, right?

I’m a mom in four ways:

  1. To a neurotypical bonus son – who lives with us all the time.
  2. To two neurotypical bonus daughters – who come on a regular basis.
  3. To my neurotypical daughter.
  4. To Tucker.

Being a mom is a tough job (yes…being a parent is a tough job – but I can only speak about being a mom) – navigating the world of mom’hood with four different sets of mom’ness can be downright exhausting.

The first child on the list only causes laundry stress.  SERIOUSLY!!!  How many pieces of clothing can one 18-year-old wear on one day?  Wowza.  I know this is ‘payback’ for only using towels one time as a teenager (sorry, mom).

The second two children on that list only cause culinary stress.  I love to cook and bake – and they love to challenge my skills.  Usually it’s fine – but then you tell me want a three layer confetti cake with a mousse layer, a cheesecake layer, and a cake layer?  Yeah…that’s going to take more than 8 hours to prepare.

The third child on that list?  She’s a piece of cake.  The only stress she gives me is attitude.  I’d say pretty typical for a 5th grade girl.  This only requires me to give the ‘you are in charge of your feelings and attitudes’ speech about once a week.

Then, there is that fourth child.  Yesterday some stuff happened and I’d rather not get into the details – but let’s just say this…

When it comes to Middle School Sports; I DO NOT expect equal playing time, I DO expect equal treatment.

Here is the deal about being an autism mom.  It’s just extra.  It’s extra stuff.  Always extra.

If the treatment isn’t equal you wonder if it’s because of autism – and wonder what you could have done different. It may have simply been miscommunication.

If he has a bad day you wonder if it’s because of autism – and wonder what you could have done different. It may have simply been a bad day.

If he scores poorly on a test you wonder if it’s because of autism – and wonder what you could have done different.  He may have just not tried.

If he flips out because of something crunchy on his plate you wonder if it’s because of autism – and wonder what you could have done different.  He may just be being extra picky.

If he yells at something minuscule you wonder if it’s because of autism – and wonder what you could have done different.  He may just be experiencing hormone overload.

If he is tired you wonder if it’s because of autism – and wonder what you could have done different.  He may just not have been that tired last night.

Always wondering, always thinking…

About normal 7th grade boy stuff.  How is school going?  Is that a whisker I see? Is he making good progress?  Is he choosing good friends?  Is he becoming a ‘good’ man? Is he behaving for teachers?  Is he doing quality work?  Is he behaving in Confirmation? Is he getting his work done on time?  Is he happy?  Did his voice drop? Is he getting invited to parties?  Is he thinking about college?  Does he like any girls?  Do his teachers like him?  Is he respectful?  Does he have on deodorant today?

I think those are all fairly normal worries.  Then, add the spectrum and you are always wondering, always thinking…

about autism stuff
about the why
about the what
about the how
about the needs
about prevention
about overreaction
about academic success
about thanking teachers
about reading that article I saw
about IEP’s, 504’s, and accommodations
about the line between misbehavior and autism

Let me tell you, sometimes you just get tired. Tired of thinking and wondering. Tired of it all.

Then, I hate to admit any of it because there are moms who deal with SO MUCH MORE.  Tucker is not physically restricted, Tucker is communicative, Tucker is SO awesome in SO many ways.  But, this isn’t necessarily about Tucker – it’s about the thing that effects his brain.

I think that’s something all of us can agree with – it’s all just extra and sometimes it feels overwhelming on your heart, it makes it hard to breathe, and you have to work a bit more to forge a smile.

Then, I woke him up this morning; with my heavy heart, shallow breath, and waning smile.  He says, “Mom, I need you can you please come here?” You are absolutely exhausted from all the extra-he always needs you, but of course you swallow your tired and go.  He looks up and says, “I’m so comfy right here because you wrapped me up like a burrito so perfectly. You’re going to have to help me get out because you do it all so right.”

You help him.  As  you walk away the tears roll; because once again, autism, in a weird way healed you. You know you can move on with your day with relaxed breath, a full heart, and a wide smile.