Day #293 – Bribery

22 Year Old Me:  I will NEVER bribe my children.

I have a problem with saying never.

Every time I say never – I end up doing that very thing.

Example:  There will never be a dog in my house.  (Read Day #122 – Animals Belong Outside and Day #280 – Puppy Love).

Example:  I will never cut the crusts off my child’s bread.  Fact:  I do, in fact, cut off crusts.

In my defense, autism changes everything.

Including bribery.

Confession Time…

As a teacher and a mom I know that intrinsic motivation is best.  I know he should just want to do whatever it is he needs to do.  I am well aware that real change in behavior occurs only when it is acted upon by ourselves.

Regardless – I bribe like crazy.

I bribe with…

Screen time
Doritos
Friends coming over
Cheese Balls
Trips to Kwik Star
Pizza
Getting out of chores
Nachos
Songs from iTunes
Ice Cream
Late(r) bedtimes

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I’m not necessarily proud of this fact – but it does get results. Trust me, I have read all kind of research and popular press articles about the fact that giving incentives for behavior reduces their intrinsic motivation.

Pause for clarification/definition intrinsic motivation is that which comes from within.  An innate want/need to act or do something.  Extrinsic motivation comes from external sources – incentives (self or other induced).

Then, I talked to another mom about my guilt of using extrinsic motivation.  I knew this type of motivation was wrong and wouldn’t ever get ‘real’ results.  She laughed at me…her son was several years older and on the spectrum.  She said, “Don’t think of it like that. Think of the end result as reinforcement.  Go ahead and bribe.  Then after you get the result reinforce with feeling. Turn the extrinsic into intrinsic.”  She also told me I spend too much time thinking…ha!

Ahhh…I get it.

My new equation:  Extrinsic motivation + Prompting + Reasoning + Reinforcement = Intrinsic Goodness

Complicated?  It seems that way…but not really.

Consider this scenario…

  1. Tucker.  If you clean your room I will allow you an extra hour of screen time. (Extrinsic motivation)
  2. Do you remember all of the steps involved in cleaning your room? (Prompting)
  3. Excellent.  It’s important to keep your room clean to avoid bugs and take care of your nice things. (Reasoning)
  4. He cleans his room. He gets his screen time.
  5. When he goes to bed I remark at how nice his room looks – thereby praising the behavior and NOT relating what he did to the extrinsic reward (or incentive). (Reinforcement)
  6. He now automatically associates vacuuming with cleaning his room. (Intrinsic Goodness)

We have found this process conditions behavior – so the behavior now occurs more naturally.

Extrinsic Motivation

Several sources and researchers will attest to the fact that children with autism are often not intrinsically motivated. It’s simple really – artificial means are necessary to change and/or prompt behavior.  Really, when considering the Theory of Mind (Day #225 – The Trouble With Taffy, Day #189 – He Feels When It’s Real, and Day #144 – Divine Lies) it is obvious that intrinsic motivation wouldn’t work.

Prompting

The other thing I learned from this mom was that helping Tucker be successful in any given task may require more direction and/or information.  Saying ‘clean your room’ was too abstract and large.  So it became, “When we clean our room we make the bed, take dirty clothes to laundry machine, pick up anything on the floor and put away, change the trash, and vacuum.”

Other people call this prompting.  It’s information given before a desired behavior that makes the behavior more likely to happen.  Setting them up for success!

It’s also the reason I wish I would have included ‘dusting’ in that list of ‘cleaning room behaviors.’ Missed opportunity.  Damn.

Reasoning

In true form – Tucker won’t do anything without reasoning.  Why is important to go to school?  Why is it important to eat vegetables?  Why is it important to go to bed?  Saying “because I said so” will NEVER fly with this child.  He expects more – he expects ‘better’ parenting.

Then I remember, as an adult I’m not a fan of completing ‘useless’ tasks.  I have a purpose for every thing I do – shouldn’t I help explain each and every purpose to him?  Sure…it takes time – but it also provides meaning. Which in turn provides motivation.

Reinforcement

Praising the positive behavior and following directions, no matter how small.  This is imperative – and to be specific.  “Tucker, you even vacuumed!  Wow!  I wasn’t expecting that.”  That reinforcement now causes him to vacuum every time he cleans.  It was a positive reinforcement upon completion of his behavior.  HOWEVER….I NEVER mention the extrinsic reward (screen time).  Reminding him what ‘I did for him’ would negate any positive feelings he gets from completing a desired task.

Intrinsic Knowledge/Motivation

Finally…yes, it happens.  Slowly – but surely.  The conditioning of behavior begins with extrinsic motivation but with enough time and patience…it can become second nature and creates intrinsic goodness.

The moral of the story?

My bribery has a point and is mostly guilt free.

Mostly, because…well…honestly – sometimes I just need to shower without interruption.

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Day #292 – VBS

VBS or Vacation Bible School was yesterday.  For the second year in a row Tucker was a helper – this year in the kitchen and he had a GREAT time.

This post is really about two things related to VBS.  One, what happens when we advocate and share and tell others.  Two, how VBS can be made ‘better’ for children on the spectrum.

First – what happens when we advocate, share, and tell others about what autism is.  Tucker was able to work with a wonderful woman named, Micki.  She knows Tucker – she has two grown sons of her own which by my standards, make her a bit of an expert in raising boys.  She would say she’s not – but her boys…er…men…are kind, responsible, giving, and compassionate. She raised ‘good men,’  so I believe she knows a little something about teenage boys.

She was amazing.  Yes, because that is who she is – but because three times during the day she checked in.  She asked how he was doing.  She reported that when he became overwhelmed he told her, “I’m going to the car to read my book…I’ll be back in a few minutes.”  She told me she was trying to only give him a few instructions at a time.  She remained positive even as he dropped grapes on the floor and spilled Grape Kool-Aid.  Last night he said, “I’m really tired but I had fun with Micki.”

Micki is one of the good ones of life.  She realized that he needs a bit more – but not only that.  She realized that her reaction towards him in any given situation would change how he felt about volunteering…and about church.

Second – how VBS can be better for children on the spectrum.  First let me tell you about the first VBS Tucker went to.  He was under the pews, hiding under tables, running down the hall – it was really the first time I saw him in an ‘intense’ environment.  It was the first time I saw my boy…well…not being my boy. I truly didn’t understand.

VBS in itself is overwhelmed.  The music, the decorations, the crafts, the people, the excitements, the shouting.  Yet – it’s a great place to learn the most important lesson – God loves you.  A good friend of mine is estranged from Catholicism.  I was talking about how much I love VBS and she had a wistful look.  She said, “You know VBS is how religion should be.  God loves you. (PERIOD).  There are no qualifications…no semi-colons….no ifs, ands, or buts.  It’s just that simple.”

True.  Which is why it’s one of my favorite events of the entire year.  Gathering children to learn about love, what could be bad about that?

Overload.  Pure overload.

So, what would I do?

First, if the child is old enough (and able) allow them to participate in the experience in a different way.  Maybe they can be an assistant to a teacher or activity leader?  Maybe they could be responsible for getting crafts ready?  Maybe they could take pictures?  Maybe they could record video?  Maybe they could write the schedule?  Maybe they could walk around with a whistle informing others when it’s time to ‘switch?’

All of these ideas would allow a child to still be involved in VBS…but in a very different way.

Second, if the child still wants to be in a regular class what could leaders do to help that child?

  • Provide (or invite) headphones to block out some of the noise.
  • Be sure they are always on an end (or better yet – corner) while singing.  This will decrease the voices that enter their area.
  • Put them in the front row so there are fewer distractions.
  • Ask parents about food preferences.  They may not have allergies – but have specific preferences (texture issues).
  • Provide them with schedules and be sure there is always a clock (or watch) available.
  • Understand that they may not have the fine motor skills necessary for some of the tasks.
  • Use the child as an ‘example’ in the games portion.
  • Provide clear (possibly) written instructions for games.
  • Help them find partners for activities.
  • Provide a ‘safe, quiet’ space for them to retreat to when overwhelmed.
  • Develop a signal or word that gives them the freedom to retreat without penalty or question asking.
  • Provide a wobble seat during study/reading time.

These are just a few suggestions and I know I could come up with twice as many if I gave myself more time to think through the entire event.

Please don’t leave these children out of learning about God’s love.  Please show love and support these families.  Tucker has been heavily involved in two churches – both had amazing safe, supportive environments.  Both congregations supported our family in a variety of ways – and I cannot thank those people enough.

We needed their love.

And, to be honest, we all need someone like Tucker.

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Day #291 – Scripting Self

So on Day #43 I introduced readers to the idea of scripting, “I used to refer to Tucker as my tape recorder (albeit not in front of him). He talks like I do. He found a way to memorize the words, phrases, and verbal intonations I use in any given situation.  I also worked with him, tirelessly and patiently.  When he responded with something inappropriate I would simply respond, “Tucker, this would work better in that situation.”  No matter how embarrassing it was [what he said].  I never attacked or shamed or embarrassed him, I simply needed him to learn.”

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Others refer to this phenomenon as ‘delayed echolia.’  Echolia may be more of an official definition of the process.  The delay in speech response is attached to a deeper level of processing language.  He’s able to go into his long-term memory, find what he needs to say, and use it to respond.

Most readers know that I don’t hide much from Tucker…I never have.  Right or wrong I’ve always believed that it’s best if he understands how he is BOTH alike and different.  With that – how important it is that he treasures his differences.

So, yesterday I tackled a bit of a hill.  I decided to tell him about scripting.  Here is how the conversation went.

Me:  Tucker, have you ever heard of scripting?
Tucker:  No
Me: Well, it’s something that we all do – but people who have autism do it even more.
Tucker:  Do I do it?
Me:  Yes.
Tucker:  What is it?
Me:  Tell me how difficult it is to put a sentence of words together.
Tucker:  Pretty hard, they get jumbled before I get them out of my mouth.  Sometimes it’s easier…but yeah, it can be difficult.
Me:  Right.  So, what happens is that your brain is SO smart and SO unique that it has memorized lots of phrases and then you ‘replay’ them.  Kind of like pushing play on a tape player.
Tucker:  Huh.  Yeah.  That makes sense.
Me:  It’s one of the reasons that you sounded so ‘grown-up’ at such a young age.  Like when you were six and you hit the back of Grandma’s car seat and said, “C’mon Bessie, let’s get moving.”

Laughter

Tucker:  Did I really say that?
Me:  Yes, and you heard it in Toy Story, so you replayed it when you wanted Grandma to go faster.  Does that make sense?
Tucker:  Yes.
Me:  Your brain is pretty fantastic, huh?
Tucker:  I think that’s pretty cool.
Me:  Me too.

So – that was the conversation.  Nothing too big…except then this happened.  Every single thing he said the rest of the night was preceded by, “I’m scripting now.  I heard this phrase while playing Madden football in 2013. ____.”  “I’m scripting now.  I heard my friend Dom say this when he was 7. ___.”

What?  Yes.  I’m not joking.  Once I brought scripting to his attention he was able to provide the context in which he memorized the phrase. Amazingly awesome and insanely insane – all at the same time.

At the end of the night he said, “Mom. This scripting thing.  It’s weird.  I can remember learning that phrase from my 4th grade teacher almost four years ago, but I can’t remember where I put my shoes every day.  What’s wrong with me?”

My answer?  Simple.  A big hug while I kissed his forehead and whispered, “Absolutely nothing, Tucker. Absolutely nothing.”

He smiled…and nodded.

Day #290 – Breaking Bad

When Tucker was young someone told me that I needed to ‘break him’ of ‘that.’  I don’t even remember what ‘that’ was – but now I’m positive it was spectrum related.

Was it because he bolted and ran when he should have stood beside me?
Was it because he threw himself on the ground if it was too noisy?
Was it because he stood on everyone’s feet?
Was it because he wouldn’t let go of me?
Was it because he would scream uncontrollably if the ‘plan’ changed?
Was it because he would run and jump on the couch over, and over, and over again?
Was it because he would scream if the food felt funny in his mouth?

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I don’t know what it was – but I do know that it sounded awful to me.

Break him? What exactly did that mean?

Break him of his energetic, fantastic spirit?  Break him so he never speaks again?

Break his soul?

Break him so he never feels worthy?

That is not what I want for my child, for any child.  Truly, even if I had been into ‘breaking’ him it would have only made the behavior worse.  This is something I do not now – nor have I ever understood.

Responding to fear with anger creates more fear.
Responding to sadness with anger creates more sadness.
Responding to anger with anger…well creates more anger.

Let me also say that it’s frustrating, very frustrating.  Parents with young children on the spectrum – it does get ‘better.’  I promise.  There will always be moments – but once you find your stride and what works for your child…it will get better, easier.

But breaking?  No way.

That’s how we have ended up with so many ‘broken’ (not my term…stealing from modern language) adults wandering around and finding fulfillment, love, and acceptance in hurtful, harmful ways.

I don’t want that for my son.

Early this year I read an article entitled, “The Likely Cause of Addiction Has Been Discovered and It’s Not What You Think.”  Truly, it is one of my favorite pieces I’ve read in quite some time.  It’s about addicts – and the reasons that addicts are addicts.  One side believes addiction is a, ‘disease taking place in a chemically hijacked brain‘, the other side believes addition is a, ‘moral failing caused by too much hedonistic partying.’

During the 1980’s we were all exposed to a research study involving rats.  The experiment was simple.  One rat, one cage, two bottles. One bottle filled with water, the other with heroin or cocaine.  Almost every time, the rat became obsessed with the drugged water and kept coming back until it kills itself.

A professor of Psychology in Vancouver,  Bruce Alexander, noticed that the rat was in the cage alone.  He wondered what would happen in the rat was surrounded by friends and activities.  So Professor Alexander built Rat Park. The Rat Park had colored balls, the best rat food, tunnels, and plenty of friends.

What happened?

Well…the rats still tried the water from both bottles – but then something unexpected happened.  The rats with the good lives didn’t like the drugged water.  They stopped drinking it and none of them died.

Huh?  Togetherness? A culture of understanding?  A culture that doesn’t force people to ‘break bad.’

The experiment gave further insight to Professor Peter Cohen, a researcher in drug use, policy, and use epidemiology.  He argues that human beings have a deep need to bond and form connections.  Oh wait, didn’t Maslow develop those ideas years ago?  Isn’t the one of the five basic needs of being a human?  Receiving (and giving) love?

Cohen found that, ‘if we can’t connect with each other, we will connect with anything we can find — the whirr of a roulette wheel or the prick of a syringe. He says we should stop talking about ‘addiction’ altogether, and instead call it ‘bonding.’ A heroin addict has bonded with heroin because she couldn’t bond as fully with anything else.’

So the opposite of addiction is not sobriety. It is human connection.

Human connection is also the opposite of ‘breaking’ a child.  There seems to be a strange, interconnection here.  The breaking of a child leads to a loss of a bond.  The loss of that bond heightens the risk for drug use and abuse. This drug use and abuse stands in the way of forming new, authentic bonds.

The next time you meet an adult that is struggling in this way…think back to this moment.  I refused to ‘break’ Tucker.  Instead, we made sure his life was full of love, compassion, understanding, support, and patience. Not because it was easy.  Not because it always came natural to us.

But because we knew, instinctively, that breaking him would result in him, one day, breaking bad.

Day #289 – Too Real

Today a friend took Estelle to Adventureland – an amusement park in Des Moines. I am SO thankful for friends like that – friends that understand the challenges we face.

So, I had a lunch date.

A lunch date with my boy, Tucker.

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A lunch date with Tucker at Pizza Ranch.

We sometimes refer to it as ‘Sauce Ranch’ because he slathers pizza sauce on everything.  I think it’s because it has the winning sweet, spicy, salty combination (Day #286 – Salsa, Chocolate, Pickles, and Chips).

Today’s post is less about autism and more about being a mom.

As I sat across from this boy I fought back tears.

When did he lose his baby face?
When did he become a young man?
When did he stop calling me mama?
When did he stop needing his face to be wiped?
When did he stop needing me to help him go back to the buffet?

I think this often with my children, but today was different.  Today was very real and very hard and I’m not real sure why.  It was just one of those moments.

I looked out the window trying to think of anything that would stop my eyes from filling with the salty goodness of sadness.  It was useless. A tear fell.  He asked what was  wrong and I told him I itched my eye and got some salt in it.  He laughed and asked if I needed a wet rag because he’d get me one.

That didn’t help, but it did make me laugh.

I’m in tears…at lunchtime at Pizza Ranch.

Most mothers have a special relationship with their children.  I would  argue that having a child with some extra stuff going on makes our connection that much more intense.  It’s so intense because we are constantly learning more, advocating more, and being more proactive.

Today I realized that I’ve been so busy learning, advocating, and being proactive that I may have forgotten to pay attention to more today’s.  I guess all of us have.  I know mothers older than me warned me about this phenomenon…the ‘it’s over before you know it’ phenomenon.

I’ve often said that we need to have children when we retire – that way we are more likely to be money secure AND have the time.  I wouldn’t have to worry so much about working to pay bills and I could spend my time just being a parent.  It’s a bit backwards, really – which is why (at least I hear) being a grandparent is amazing.

I need the clock to stop.  At least on days like today.

Days when the fact that my boy has become a young man is just all too real.

Day #288 – Cinema Time

Today I was going to write about my new friend, Erin – but I just need more time to process and think.

Instead – I’m going to write about our cinema experience today.  Generally, Tucker hates going to movies.  Today, I bribed him to go to Inside Out with free popcorn and a matinee showing.  I’ve learned matinee is key because they are far fewer people and many more seat options.

The movie is about an 11-year-old girl named Riley.  She is moving to a new city and we actually get a look inside of her brain and how her emotions work together (or not) to make decisions.  The emotions that are center stage include joy, sadness, anger, fear, and disgust.

I really, really wanted him to see this movie.  Why?  It’s become an item of discussion within the autism community.

According to the Southern California Sun News & Review, “However, parents with children of special needs are discovering their children are having an exceptional positive reaction to the movie, where the intangible understanding of emotions have become tangible.”

For the first time in quite some time Tucker was captivated by a movie.

Throughout the movie it is quite obvious that ‘Joy’ rules this character’s ‘motherboard’ (phrase coined by Tucker with regards to this movie).  The character is generally optimistic and is continually trying to look on the bright side – but then some stuff happens and Joy realizes that she also needs Sadness to help Riley live a full life.

My favorite quote of the movie?  Said by Sadness, “Crying helps me slow down and obsess over the weight of life’s problems.” Ha!  So true…too true and soon you’ll read evidence of that.

As soon as we began the journey home Tucker proclaimed, “Mom, you are like Riley in the movie.  Joy is at your motherboard all the time.  I like that.”

I like that he opened the door for me.  I knew I wanted to have a conversation but didn’t know how I was going to start it.

Estelle piped up, “I don’t think the emotion in my brain was in the movie.  I’m pretty sure I have worry in charge of my motherboard.”  Then she laughed – and we followed, because she was right.  Always worrying about something – but we have done lots of great work to help her separate anxiety from worry.  They are certainly intertwined.  Anxiety is all-consuming…worry is a thought process that allows a logical thought to cycle back and prevent worry.  Teaching her to separate the two has allowed her to have Joy as her ‘co-pilot’ (in her words).  Thank goodness.

I finally asked, “Tucker – who do you think runs your motherboard?  Was the emotion in the movie?”

He was quiet…looking straight ahead…then he quietly said, “Yes.  Fear.”

I nodded, that’s what I thought he would say.  My heart melted a bit and a tear began to form and I knew I was about to obsess over the weight of life’s problems (thanks, Sadness).

When I first read all of the symptoms that come with having a hypersensitivity to the vestibular system I thought of my sweet boy.  Factors include moving slowly and cautiously, avoiding taking risks, clinging to an adult, appearing terrified of falling even if there is not a real risk, and so many others.   All of these are because of fear.  A fear that supersedes logic.

But not just that fear…

Fear of failure
Fear of not being ‘normal’
Fear of letting people down
Fear of not being good enough

Why the tear?  Because fear will hold him back.

So I asked, “Why do you think that is?”

He shrugged his shoulders and a tear formed.

We sat in silence for quite some time.  Finally he said, “I want it to be Joy.  Do you think I can change that?”

“Yes, Tucker.  Yes.  I think you can do anything you want.  I think Fear is an important part of who you are and I don’t want you to ever think you should try to be someone else.  Fear keeps you safe, but fear can also stand in the way of you experiencing parts of life.  I also see a lot of Joy in you – so it’s there.”

More silence.

When we arrived home he decided to take an online quiz that tells you which character you are most like.  Because we all know everything you read on the Internet is true (and WAY more reliable than mom).

His result?  Joy.

He proudly showed me the result, “See mom, it can be joy.”

Yes – yes, it can.

Pixar Post - Inside Out characters closeup

Image from  http://www.pixarpost.com/2014/11/inside-out-books-popping-up-on-amazon.html

Day #287 – My New Friend, Erin

Okay folks – here is the deal, I recently had a new reader reach out to me.  She told me that she had recently discovered my blog and spent quite a bit of time reading.  She asked not to quit writing because she thought that my words were quite powerful and could help parents and others whose lives are transformed by autism.

She also disclosed that she has autism. I’m always very interested to hear from teens and adults that have autism – it helps me to connect with where Tucker is heading.  I asked her to tell me more about her.

Let me tell you…I was SO moved by her response I asked if I could share her story.  She said yes – there are so many things I want to expand on from her story.  I’ll do that some other day – I have read this post at least 20 times and each time I am moved – to tears, to smiles, to fist pumps, to ‘You Go Girl!.’  I really need to take my own time and let this soak in…all the way in.

For right now? Take a moment and read about my new friend (we already have a lunch date set), Erin.

I am 25 and am from northwest Arkansas but I live and work in Bloomington, IN. I live by myself with my dog, Ace. Ace is my best friend. He helps me a lot. He always knows when I need to calm down and he helps me.

I am the video coordinator for women’s basketball at Indiana University. I am responsible for breaking down film of our practices, games, and upcoming opponents as well as making recruiting mailouts on Photoshop. Also, I do analytics for the WNBA’s Seattle Storm. I was out in Seattle for most of May and now I am doing all of my work for them remotely.

No one ever told me I had autism when I was growing up because I always excelled academically in mainstream classes. I would get very overwhelmed and would sometimes just leave class but I never knew what was wrong. When I went to graduate school, I had to find a new doctor to write my prescriptions, he diagnosed me with autism. That was when I found out.

Not knowing that I had autism when I was growing up was both a blessing and a curse. It was a blessing because no one ever put any limits on me. All I knew was I took my medicine every day for ADHD. I went to college because that was what I was supposed to do. Then I went to graduate school. I am thankful for that – without that I do not know where I would be today.  
The curse was that I felt all these things awful things.  In college, I tried to overdose on my medicine because my brain was so loud and I could not make it stop. I thought if I took all my medicine my brain would be quiet. My anxiety was out of control and I was very obsessive. I wish when I was struggling someone would have told me why.
Now when my brain gets too loud, I know that it is not ‘me.’ It is only the autism part of me.  I do not want to quit – but often, autism wants me to quit.  When I get my head to be quiet and I do it in a positive way, I recognize that autism is not all of me, only a part.
My autism is not all bad though. It makes my brain very good at my job: film breakdown and statistical analysis. People know that I am very, very good at my job and now they all know that I have autism. Disclosing was a great decision for me. Before, I got called “retard” a lot.  Now the people I work with know I have autism; but they treat me very well and I do my job very well. 
The sensory environment is more difficult for me as I get older. I think part of it is because it is only within the last three years that I have learned that everyone’s world is not as loud as mine. I hear a lot of noises that don’t bother other people.
For example, right now, there is a lot of construction going on at a building near mine and the jackhammering has been so loud. Because of this, I wear my headphones most of the day. Also, game days are very loud.  I sit down at the scorer’s table for most games so I also wear my headphones then.
When my senses get too loud. I like to chew on things and I know it helps me calm down. At home, I have a trampoline, a physio ball, and a weighted blanket that I use to settle down, especially when I get home from work. When someone told me that I had autism, I learned that I could fill this metaphorical toolbox with things that help me calm down: music, games, weighted blanket, puzzles, trampoline, and fidgets.
I am honored that she reached out to me…but I am more honored to call her friend.  If you want to learn more about Erin, please visit her website:  http://erinmmckinney.com/my-diagnosis-story/
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Day #286 – Salsa, Chocolate, Pickles, and Chips

Today is Tucker’s Baptism Birthday – which resulted in an ‘out to eat’ meal.  I normally cook the children whatever they want for their regular and Baptism birthdays – but today I just ran out of time. So he had the opportunity to choose where he wanted to go out to eat.  No surprise – he chose the local Mexican restaurant.

We ran out of salsa at the table…so he used hot sauce until our server brought more salsa.  It wasn’t just any hot sauce though – it was real hot sauce. Each chip 1/3 covered in hot sauce.  Straight from the bottle…straight into his mouth.

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What does this have to do with autism?  Actually, quite a bit.  In the category of being ‘hypo sensitive’ to oral input is an intense love for spicy, sweet, sour, and salty foods. Children on the spectrum often have a preference and craving for foods that have…um…intense flavor?  This makes sense when you think about them needing extra stimulation.   Anything that is super spicy, sweet, sour, or salty is often first on their menu.

Tucker’s favorite foods?  Salsa, chocolate, dill pickles, and chips.  Spicy, sweet, sour, and salty (he also eats at least two apples every day – but that has to do with the crunchy factor).

How much salsa is too much?

In our house, it’s an impossible question. The more the better – and on everything. Bologna sandwich?  Yes.  Ham sandwich?  Yes.  Spaghetti?  Yes.  Do I think it’s gross?  Of course.  Do I stop him?  No way.  Salsa is generally healthy.  With all that lycopene his chances of every developing prostate cancer has to be incredibly low.

Next?  Chocolate.  The amount of chocolate that makes people gag.  Chocolate bismark, with chocolate filling, and chocolate frosting.  Chocolate Captain Crunch.  Double Brownie Fudge Blizzards made with chocolate ice cream.  Gagging yet?  I do…in private. I used to try to stop this chocolate craving because I thought it was ‘too much.’  One thing I’ve recognized is that it doesn’t matter what I think.  He’s trying to ‘fill’ his senses – and if a Double Brownie Fudge Blizzard brings him pleasure…then so be it.  I’m not the one eating it.

Then comes the dill pickles.  On anything – and by the handful.  Actually, jarful.  Pickles on pizza and sandwiches.  Pickles wrapped in tortillas and cut into chunks on top of chips (the salty need).

Salsa, chocolate, pickles, and chips – it really doesn’t bother me anymore because I now know about Pica. Pica (pronounced PY-kah) is fairly common in children with autism.  Pica is when children (and teens) have an appetite for non-food items.  While Tucker used to have a tendency to chew on paper and his clothing – he never actually had cravings for non-edible items instead of food.

Pica is considerably dangerous because children can crave such items as soil, clay, paint chips, chalk, coffee grounds, glue, hair, paper, sand, and even feces.  I don’t think I need to go further in describing why this can be very dangerous.  Here is a blog post from a fellow mom if you are interested in reading one family’s journey with Pica (http://alterna-mom.blogspot.com/2012/02/pica-and-autism-one-familys-solution.html)

So we love our salsa, chocolate, pickle monster – because it could be much worse.  It’s one of those ‘learned lessons of life on the spectrum.’  It could always be worse….

Always.

Hyposensitivity to Oral Input
(from:  http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html)

_x_ has a preference and craving for excessively spicy, sweet, sour, or salty foods

Other ‘Oral’ Sensory Posts

Day 16 – Chops, Kisser, Mug, Piehole, Trap, Yap
Day 98 – Crunchy House
Day 99 – Mustard Cheeks

Day #285 – The Space Between

Dear friends and family,

Sometimes I ignore your texts and phone calls.  I’m sorry.
I actually do it on purpose.

Love,
Me

It’s the truth and it’s necessary.

So far in this blog I have used a version of the word schedule 63 times.  It’s OBVIOUSLY a theme.

Along with schedules? Transitions…the space between in our very important schedule.

change

When I ignore you – we are in the space between.

What is so difficult about transition times?  Two things that are intricately related.  Getting out of focus and attending to something new.

Something new.

Getting out of focus.

My mom noticed that there was something ‘different’ about Tucker when he was four.  She said, “I know he doesn’t have ADD/ADHD.  When he gets into something he’ll do it for hours if I let him. Books, puzzles, or his Thomas trains…but there is something odd.”  I had known for some time – but it was actually nice to have a confirmation from someone I loved that something was ‘different’ not bad – just different.

It is just damn difficult to get him to focus on something other than what he is focused on.  This makes life increasingly difficult – but I try to remember that this intense focus will make him an AMAZING worker someday.  Give him a task – he will have an intent focus until he finishes the task.

An example? When he assigned to clean his room once a week, he completes the task in 30 minutes – and he doesn’t cut corners.  His 30 minute cleaning – includes vacuuming, dusting, taking laundry to the laundry room, picking up/putting away, and making his bed.  His focus is extreme.  There is difficulty in getting him out of focus before HE is finished with HIS task.

Once we get him out of focus we face the second difficulty, the trouble with new. He is not a fan of anything new.   This includes a new activity – a transition to something else is inherently a transition to something new.  Whether it is actually ‘new’ to him or not – it’s a change.

So, what are transition times?  Besides the more obvious transitions (between activities) here are others…

Moving from the house to the vehicle to go anywhere.
Moving from the vehicle to a destination.
Before a meal.
After a meal.
Waking up.
Before bed.
Inside to outside.
Outside to inside.

All of those moments take extra care and work. So – if you call/text during these times, I will ignore.  During these times we have to go slow and be thoughtful about what is happening.  Why?  It’s about managing the space between – getting him out of focus, transitioning to something new, and helping him find a new focus.

  • The morning sets the tone for the day – if the morning doesn’t go well his day is usually ‘ruined.’
  • The after school time sets the tone for the evening – so if the pick up doesn’t go well, he will hide in his room the rest of the evening.
  • Bedtime sets the tone for the next day – if bedtime doesn’t go well and he will be tired.  If there is one thing all parents of ASD children know…it’s how important sleep is.

So, if I ignore your call/text during the space between; please understand that these are major transition times in our house.  As most mothers, I want his life to be calm and peaceful, I want him to have success – so it is of utmost importance that his needs come first in these moments.

The moments between.

 

Day #284 – One Lesson

I’m really excited about today’s post.  Why?

For Mother’s Day I posted 13 important lessons that my mom imparted towards me.  SO, it would seem only fitting to write about my dad.

Today?  One lesson.

It’s not that he has only taught me one lesson…trust me, there are plenty of idioms I could repeat and reflect upon.

It’s one lesson though – a lesson that much of my life is built around.

Here it is…

Every day you wake up you have a choice.  You can choose to look at the world through a positive lens.  You can choose to give people the benefit of the doubt.  You can choose to be kind.  OR You can choose to look at the world through a negative lens.  You can harbor anger, guilt, shame, and hatred.  It’s up to you.  Every day.  No one dictates how or who you are – except you.  Every reaction you have is your own, don’t blame others.  Every day.  It’s your choice how to live.

One of the criticisms that I have received in my writing is that I’m too positive and how can I ‘actually’ be happy that Tucker has autism.  Well, duh.  Of course not.  No one wants their child to have difficulty in their life.

But I have a choice.

I can choose to focus on what is positive about autism.  I can choose to relish his quirks.  I can choose to enjoy the extreme focus on things.  I can choose to reflect, positively, on the strides we have made.

OR

I can choose to be torked off that autism is a part of our lives.  I can choose to only think about all of the difficulty.  I can choose to be annoyed.  I can choose to be angry.

It’s up to me – but that choice reflects on Tucker.  That choice reflects upon Estelle.  That choice IS how we live our lives.

I choose positive.

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Because that is what he teaches.