Day #324 Then and Now

Then…
When he was overwhelmed he would lash out physically.  He would hit, throw things, and scry (my made up word for scream/cry).

Now…
This morning when he was overwhelmed his lip began to quiver and he went outside to be alone.

Then…
I would hold on to him until he stopped.  Once he stopped hitting me I told him I loved him and then would gently ask questions until I could understand what was wrong.

Now…
I follow him outside and sit beside him.  As he drops his head into his hands I see a tear fall.  I gently touch his arm – yet give him space.  I tell him I’ll wait beside him until he can tell me what is bothering him.  He always does…in his own time.

Then and now are common themes in our life…because Tucker has and will continue to develop more positive coping skills.   Notice I didn’t say ‘appropriate.’  However he responded in whatever age of life was appropriate for where he was and what he was feeling.  I simply try to focus on the word ‘positive.’  It’s much like the difference between understanding a melt-down and a tantrum.

Then and now are present in a variety of ways  – not just in his behavior, but in life.

We are leaving soon for a weekend getaway to a nearby (1 hour away) lake. My husband’s family gathers there every summer and it is a ridiculous amount of fun  – floating, laughing, eating, boating…all of the best stuff in life.  Last year on the trip there was a boating accident.

Then…this accident happened while we were asleep – so none of us were present.  We only heard about it the next morning.  A boat was going too fast and hit the dock at our hotel.  This was a year ago.

Now…it’s the first thing Tucker brought up after he sat in the chair outside. Lip quivering…worrying about what we would do if we were on the dock and the boat hit the dock.  Worrying about our boat having an accident.  This memory of his is truly remarkable.

Then…we made a logical plan for all of the ‘what if’s’ were bothering him.  It does seem ‘nonessential’ to make a plan for a boat hitting the dock – but it IS essential to him.

Now…we have a plan.  More importantly – he has a smile.

While you can’t ‘cure’ autism – we have found with gentleness and persistence our ‘nows’ often become our ‘thens.’

Now…we’re off – I’m sure I will have all kinds of adventures to tell you about soon.

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Day #323 – Overwhelming

Sometimes I’m absolutely overwhelmed.

Grab a tissue.

Sometimes I’m absolutely overwhelmed with love.

I’m not joking.  This is unlike any other post I’ve ever made…because today, I’m overwhelmed.

I love that he’s funny and doesn’t ‘get’ metaphors.
I love that everything is planned.
I love that he’s so accountable.
I love that he really doesn’t care what other people think.
I love it that when he sees me after a couple days away he greets me with his ginormous wingspan…just waiting to engulf his ‘little mama’ in a hug.
I love it that he still loves (and chooses) the movies he watched as a child.
I love it that he continues to read the Wimpy Kid book series…over and over and over again.
I love it that when we talk he won’t make eye contact and then there is a 2-second period that he will look directly at me.  That 2-seconds?  Overwhelming love.
I love it that he watches random YouTube videos for information like, “Salt doesn’t make water boil faster.  You need to know that since you cook for all of us.”
I love it that he wiggles because his clothes feel funny.
I love it that it sometimes takes him 5 minutes to get two sentences out – because man…they are some REALLY good thoughts.
I love it that he wears mismatched clothes because he put them on himself.
I love it that he retreats to quiet places when his brain feels like it’s going to explode.
I love that I get to have such a close relationship with his teachers.
I love that other people work at getting him.
I love when other people engage him – not just once, but patiently over and over again.
I love it when he tells me the toilet is clogged – because that means he really went (for those of you who have dealt with ASD related constipation…you know what I mean).
I love it when he can’t stop talking about the Vikings.
I love it when he gets so focused he can’t think about anything else.
I love his rule-following nature.
I love that he keeps me on a schedule.
I love it that he gets average grades but he’s so amazing in all the ‘non-graded’ ways.
I love it that we’ve done so much ’emotional labeling’ work that he’s more precise than most adults about what he’s feeling.
I love it that he talks like a grown up “Mom, I really appreciate you doing that for me.”
I love it that he never stops moving.
I love it that he’ll grab onto my hand in a public place.
I love it that he’s so careful.
I love it that he wraps himself before bed…in the same way I swaddled him as an infant.

I know I spend a lot of time writing about overcoming difficulties and developing coping strategies – but there are also moments that I have this overwhelming love for him.  Overwhelming love for autism.  I know it sounds weird – to love something that can cause pain and difficulty..but here is the deal.  It’s him.  The autism makes him who he is…this wonderful young man of mine.

His laugh is like a chorus singing.
His eyes twinkle like midnight country stars.
His smile is like a crescent moon.
His touch is as gentle as a furry caterpillar.

He has autism.  He is mine.  I really wouldn’t want him any other way.

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Day #322 – I Lie

I do.

I know I shouldn’t, but I do.

I lie for my sanity and I wish more parents would admit this fact.  If for no other reason than I wouldn’t feel quite so guilty and alone.

On Day #31 – Stuck Tuck I explained and wrote about how Tucker will get stuck on something and not let it go. NOT. LET. IT. GO.

This time he’s stuck and I’m telling all kinds of lies.  Just call me Pinocchio.

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A good friend of his snapchatted his ‘new’ class schedule to him to see if they had any classes together.  Of course, we got right online to see if we could see his new schedule.  He only had one thing on his schedule – the time he spends with his Special Education teacher (which is also his study hall).

Then an hour went by and we checked again…another hour, and again…another hour, and again.

After five hours I contacted one of his teachers to see if she knew anything about the ‘release’ of schedules.    I did this partially so I could say, “I sent a message to Ms. X.  I’ll let you know when I hear back from her.”

That worked…until the next morning.  When I still didn’t have a response from Ms. X. I began lying.

“Tucker, scheduling is done in alphabetical order.  Your friend’s last name begins with a C.  Yours begins with a J.  You’ll just have to wait.” Lie #1.
“Okay mom.  How many students do you think have each letter for their last name?”
“Huh?”
“Like…how many D last names, E last names, F last names, G last names, H last names, I last names, last names until Jo, because then it would be my turn.”
Stunned look on my face.
“I have no idea Tucker.  Why don’t you start thinking about all the kids you know and counting yourself?”
“Okay.”

Two hours later.

“They should be E by now.  Seriously mom, it can’t take more than an hour per letter.  Did you hear from Ms. X”
“Yes.  She’s going to ask around next week and get back to us.”
“Next week???  If it’s in alphabetical order it will for sure be done by then.”

This time I gently nodded to avoid lying…but to also avoid any sort of committal.  While at the same time, feeling like I need to be committed.

Friday at 3 PM.

“Mom, they have to be to the J’s by now, it’s been 5 hours.”

Check the computer.  Still no schedule.

“I’m sorry Tucker.”

Saturday morning.

“Mom, check the computer”
“Tucker, it’s Saturday.”
“Mom, I know but we drove by the school and there were cars there.  I bet teachers are getting ready for the year.”

Check the computer.  Still no schedule.

Sunday morning.

“Mom, check the computer.”
“Tucker, it’s Sunday – I guarantee no one is working.”
“I just don’t understand how it’s not done yet.  There has been way more than enough time since I received that snapchat.”
“Well, Tucker.  I bet they do ALL the schedules at the same time – so it’s not just the 8th grade they are working through but 5-8 grades.  If you consider that…think of all the letters for all the students that are between C and J.” Lie #2
“Good point mom.”

Monday morning.  6 AM.

“Mom, check the computer.”
“Tucker, it’s 6 AM.  No one has been to school to get any work done.”
“You don’t know that.”
“I do know that.  I’m friends with the administrators on FB, they were all out of town this weekend.  Let them get back to work.  We’ll check around noon.”  Lie #3.
“Oh…Okay.”

Monday, noon.

“Mom, check the computer.”

His schedule has since arrived…thank goodness.  I told three lies here.  I know we shouldn’t lie to our children.  Why did I lie?

  1. Lie #1 – It was driving me crazy – not him.  IT…the situation.
  2. Lie #2 – He began to blame his ‘lack of schedule’ on his IEP.
  3. Lie #3 – It was driving me crazy – not him.  IT…as in not having the information to help him.

I’m sorry – but I lie.  I lie to retain my sanity.  I lie to help him.  It’s true – and this isn’t the first time.

Nor will it be the last.

Day #321 – Sox Has Autism

Sox (White Sox) is Tucker’s puppy. Well…she’s kind of a dog – but we still call her a puppy.

You may have read about her in one of these posts:

Day #20 – The Turtle or The Hare, Part 2
Day #122- Animals belong OUTSIDE, right?!?!
Day #280 – Puppy Love

After our 4th of July party my dad said to me, “I think she gets Tucker because she, too, has autism.”  This made me happy because he really is recognizing so many of the signs.

Then, I laughed.

Now?  Now that I’ve been paying attention I think he may be right.  Now – obviously I would NEVER directly compare dogs to having autism – but I think using these comparisons are a good way for those who have never really been around someone with autism to recognize just a few of the characteristics. Here are just a few examples…

    • On the 4th of July Sox was terrified of the noise of the fireworks.  She found a quiet space (the bathroom) and somehow shut herself in.  She was happy. This is sensory overload.
    • When we have a gathering, Sox runs around like a maniac.  This maniacal behavior?  It mirrors what happens when Tucker is overloaded. This is sensory overload.
    • Sox is always in ‘my way.’  If I’m in the kitchen she’s standing between me and whatever it is I need.  She steps on my feet constantly. This is ‘grounding.
    • I have to tell Sox the same thing over and over and over again. This is used constant and consistency. 
    • If you have a free hand she will nudge you until you pet her.  When you pet her…she’ll be calm. This is more grounding.
    • She follows the rules and does what I ask her to do. This is about following rules.
    • She wants to play, but doesn’t always know her strength. This is a proprioceptive problem.
    • Sox likes her schedule and if something is ‘off’ she gets a bit ornery.This is about scheduling.
    • If she is naughty her ‘self shame’ is out of control, we have to quickly forgive her so she will stop sulking. This is about having plenty of grace and compassion.
    • Sox is not adventurous.  She was never (not even as a puppy) one to really get into things.  This is not enjoying new adventures. 
    • She’s loving in ways that surprise me.  For instance, we recently rescued a kitten in our yard that was abandoned by her mother.  Here is Sox cleaning her.  Who says puppies and kittens can’t be friends? This is about having empathy, and lots of it.

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Most of all?  Most of all Sox has autism because she is fiercely loyal – and if there is one quality of Tucker’s that I would choose to ‘put on display’ it would be loyalty.  Loyalty is a characteristic found often in people with autism.

People with autism (or autistic people…depending on preference) tend to be very open and honest.  They are not likely to try to manipulate a person or situation.  Why?  Well – one of the things that we know about Tucker is that he relies on rules and processes.  From an early age he was taught that ‘friends should be loyal and help each other.  Friends shouldn’t cut each other down.”

We’ve often explained this loyalty to teachers – especially ‘new’ teachers.  Once you have him – he’s yours.  he will do just about anything you ask.  However – if you break this trust?  It’s gone.  For good.

So…there we have it.  Tucker has autism.  Tucker’s dog apparently also has autism.  When Tucker comes home from being gone I tell him I missed him and hug him.  When Tucker comes home from being gone Sox runs around him, licking him, and won’t leave his side for a couple of hours.

Maybe this is why….maybe this is why Sox just ‘gets’ Tuck.  She knows when he needs her and she lets him do just about anything to her until he’s happy.

Two peas in a pod, for sure – and neither are huge vegetable fans.

Day #320 – Cinema Roll

Tucker generally dislikes movies.

However – in the past week he has broken a significant barrier to ‘voice’ his likes and dislikes when it comes to the silver screen.  I don’t know how it happened and I really don’t care (as is with much of this ASD world).

A month ago he would have started watching a movie and all of a sudden he would throw his hands over his eyes and/or ears…or he would simply walk out.  Many parents would simply give up – that’s just not my style.  I generally keep trying until I find something that works for him.

Then came Inside Out (Read Day#288 – Cinema Time).  He made it through, laughed, AND we were able to talk about it afterwards.  I felt the tide turning.

Last week we were sitting on the couch and my husband said, “Tucker.  If you could be one of the Avenger’s who would it be?”  Obviously he likes the Avenger’s and this is (was) part of my ongoing issue – which movie he would like and which he wouldn’t.  At the time there really seemed to be no rhyme or reason.  He said, “Well, Captain American is my favorite [as evidenced in Day #31 Stuck Tuck], but I would choose to be Hulk.”

Then he said, “Tucker.  You like the Avenger’s.  I just can’t figure out why you like some movies and not others.  Like the Avenger’s is made up, but so is the Hunger Games and you have no desire to watch that.  Do you think you can tell me why?”

Here is the very important part.  He began talking and then stopped and said ‘Nevermind.’  Then Matt said to him, “Take your time Tuck, we have all night for you to put your ideas together.”

Tuck smiled and nodded.  I got teary (pretty normal…you know, when people respond in positive, helpful, nonjudgemental ways).

Three minutes later he said, “I like movies that are funny with real people.  I like movies that are totally fake – you know…like…duh there is no such thing as The Hulk.  I don’t like movies that are scary and could be real.  The only ‘real’ movies I like are ones that make me laugh like Dennis the Menace or Grown Ups.  I like really fake movies like the Avenger’s or Mr. Magorium’s Wonder Emporium.  I don’t like or even want to watch The Hunger Games – because that could happen.  I don’t want to watch The Fault in Our Stars because you all talk about how it makes you sad.  Why would I want to be sad and watch a child die?”

Huh.  That actually makes complete sense.

He likes fiction where there is NO chance it could happen.
He likes fiction when it could happen…but it’s funny.

So, tonight we tried it out and went to Pixels.

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First – let me tell you that it’s been a LONG time since I have laughed that hard – LITERALLY out loud in a movie to the point that I was worried about annoying others.  If you are a ‘product’ of the 80’s – you WILL laugh during this movie…a lot.  No – it’s not a ‘thinking’ movie – yes, if you let it…it will make you laugh.  It also has an wicked-awesome soundtrack..Surrender by Cheap Trick, We Will Rock You by Queen, Working For The Weekend by Loverboy, She’s Gone by Hall and Oates, and Everybody Wants To Rule The World.

Tucker and I watched three of the movie trailers today to prepare for the movie.  It’s funny AND is not real at all.  Jeepers cats was it funny.

Now…let me preface this next section with the fact that I know the reviews have been less than stellar.  Maybe I like dumb, weird humor – regardless, I thought the movie was freaking hilarious and it seemed to be a perfect match for Tuck.

The movie opens with a young Kevin James and Adam Sandler talking about patterns in the video games I grew up with (Pac-Man, Frogger, Donkey Kong, etc.).  Then, the ‘nerds’ get to save the day (and planet).  Patterns and the ‘weird’ kids saving the day?  Perfect.

Why do I think Tucker loved this movie so much?  Adam Sandler’s humor is obvious – it is not hidden in metaphors or cliché’s.  It’s right there…you don’t really have to search for it (in hindsight – Tucker loves all of Sandler’s movies).  It was obviously fiction (the gigantic Pac-Man eating New York City is great example).

He laughed.  He laughed HARD.  He laughed so hard he was doubled over in his movie seat.  It was as sweet as can be.

I think we’re on a Cinema Roll – which for me, is just as sweet as a Cinnamon Roll.

Day #319 – Tippy Canoe

Some of my family members will laugh at the title of this blog – for reasons I won’t disclose right now.

THIS tippy canoe has much more to do with yesterday’s post (Day #318 – Sad), an experience I had today, and my vestibular system.

Yesterday, you learned that Estelle received a kayak for her birthday (which is today – she’s  11 – I’m still wondering how that happened).  She received a good amount of ‘training’ in the pool and decided that for her birthday she wanted a shot at the river.

Yesterday, you also learned that Tucker hates the river.  I hate leaving Tucker behind for family events – but also knew that the chance of seeing her tip?  That would ‘do him’ in for his lifetime – I would never get him back on the river.

So, we made a deal – he would come on the river after he has cavities filled next week.  His logic?  “Mom, I really can only stand thinking about one stressful event at a time.  Let me get through the cavities.”

Just so we’re all clear here – that’s a horrible argument…but I let it go.

So, out to the river we headed.

Before we get too much further I need to tell a bit of my history.  When I was in 7th grade our school sent ALL students in 7th grade on a canoe trip.  It was 1989, you know – schools weren’t as concerned with only teaching things that mattered for a test and parents weren’t as concerned about litigation.  The idea was that this river ran through our school district and school folks knew we would be on it.  Why not teach students ‘proper’ safety techniques when on the river?  I know, genius.  1989…full of genius.

Part of this ‘training’ was that there were two partners in each canoe (also keep in mind that I graduated with around 60 students…so this was a very small school).  Each partner took their turn in the front and the back of the canoe.

I haven’t been in the front of a canoe since then.  Why?  Because I learned to steer and am darn good at it.

My husband and I were going to be in the canoe with Estelle near us in her kayak.  He, of course, took the back seat (aka stern)- because he is also always the ‘driver.’  That left me in the front (aka bow).

Within 20 seconds we flipped the canoe.

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(From:  https://csdailyblog.wordpress.com/2014/09/06/canoe-training/14-09-05-canoe-training-33-tipping/)

How?  The canoe began to lean and the person in the stern seat is usually the one to correct the lean.  I have always been that person and so has he – two people leaning the same way is a VERY bad deal in a canoe.

There went my iPhone.

We got back into the canoe and started down the river.  Here is where I began to REALLY learn.   I finally felt what Tucker feels.

I’ve written about the vestibular and proprioceptive systems before – but today was the VERY first time I felt it.  Let me tell you…I cannot imagine how Tucker lives his life like he does.

Basically  –

  • The vestibular system coordinates movement and the  sense of balance.
  • The proprioception system coordinates the body in strength and effort when moving.
  • The brain uses information from the vestibular and proprioceptive systems to understand body position in any given moment.

I COULD NOT get my body to settle down.  It was involuntary.  I ‘normally’ sit in back – my body is USED TO shifting weight and position while canoeing.  The first 30 minutes of the ride were excruciating.  I tried closing my eyes.  I tried leaning back.  I tried putting my legs out front.  I tried crossing my legs.  I tried taking deep breaths.  I could not get my body to calm down.  I was literally shaking.  I stopped paddling to concentrate.

I am BEYOND blessed to have a husband that is so patient and understanding of what was happening.

He finally said, “Nik…you need to find a way to ground yourself.  Just like Tuck.  Find something to give your body a different focus.  Stop thinking about it.  Your system is overwhelmed.”

Just like that I knew.  I knew how he feels nearly all the time.  It lasted 45 minutes for me and I was nearly in tears.  I just wanted to get out and float down the river on my life jacket.  The involuntary movement was caused because of a mismatch in my vestibular and proprioceptive systems.  Period.  No question.

I started paddling – but not paddling to move.  Paddling to simply exert energy. That’s when it got better.  I had a different focus and the energy was being released.

I have no idea how Tucker lives this way.  NO. IDEA.  My body is exhausted from trying to manage, cope, and renegotiate.  Better yet- I have NO IDEA how he lives like this and tries to learn or have conversations or anything else.

I couldn’t talk.
I couldn’t shift how I was sitting.
I couldn’t change my eye contact from downstream.

I. COULD. NOT. DO. IT….and yet we expect him to do it all the time.

Lesson learned.  Lesson learned.

For more on the vestibular sense visit:

For more on the proprioceptive sense visit:

Day #318 – Sad

Sometimes I get sad, but not about the things people would assume I get sad about.

I don’t get sad about the label.

I get sad about the affect of autism.  Here is an example.

I’m posting late tonight.  Why?  Because I had an amazing day with my friends.  Doing what?  This.

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Canoeing down the beautiful river that runs by our home.

Seriously, this is the stuff that is ‘of the God’s.’  I grew up about four miles from a river and 1/2 mile from a large creek.  Many, many of my summer days were spent knee-deep in nature’s hydration – wading, finding clams, catching minnows, sinking in the sand.  There is a sort of peace here.  No technology.  The laughter of friends.  The solemnness of  the trees.  The sound of the current.  The understanding of God’s beauty. When on the river I often express to my friends, “This is life.  THIS is life.”  This is the stuff that is most important in life.

Then…I get sad, and my friends know why.   I sometimes have difficulty holding back the tears.  For two reasons really- because it’s such a part of who I am and because it’s so difficult for Tucker.

He hates the river.  Before I go on…you need to know that this is not the Mississippi or the Missouri.  This river is a ‘stand up’ river.  So, if the canoe flips…stand up, you’ll be fine.

Regardless – he hates it.  He hates his feet off the ground if even for a moment(read Day #50 – Overcoming Fear to Trust).  Balance?  Not his strong suit.  Loss of control?  Not his strong suit (read Day #18 – Turtle or the Hare, Part I)

We have finally come to the point that he agreed to go on the river one time per summer.  I’ve tried tubes.  I’ve tried kayaks.  It doesn’t matter.  He doesn’t like the risk.

I also have to write that once we get him on the river he has a GREAT time…but getting him to go?  Ugh…

Today, Estelle received a kayak for her birthday.  She, in fact, LOVES the river.  She loves EVERYTHING about the river.  The water, the trees, the breeze, the jumping fish – EVERYTHING.

Tonight when I arrived home I was beyond excited to watch her in her kayak.  My husband spent the afternoon teaching her about padding, about boarding, about exiting, about floating, about flipping  – all of it.

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We went outside and Tucker followed.  She attempted to board the kayak and misstepped.  She fell into the pool giggling. He stepped back and looked at me.  “Mom, you better get in the pool in case she runs into trouble.”  I jumped right in.

Here is the deal – I was, at one time, a certified lifeguard.  I’m not now – but those skills don’t ‘vanish.’  Yet his reticence and anxiety take over. He just cannot take the chance.

That’s what makes me sad.  I get that other parents would love his careful nature – and while it’s awesome, it makes me worry.

It’s not just the river – it’s life.

Taking chances is part of life.  Sometimes (and often) when you take a chance the most amazing things happen.  Truthfully, sometimes you get hurt…but at least you have a story to tell.

Regardless, we keep trying.

Trying every angle possible – not just because I love to be on the river but because I want him to know and respect the beauty and the power of God’s creation.

Trying because risk is a part of life. As Oscar Wilder said, “To live is the rarest thing in the world, most people exist that is all.”

I want, above all, for him to live.

Day #317 – Quality Control (aka Tucker)

Today, I asked Tucker what I should write about.

He replied, “Our trip to Oklahoma.”

Now, I’m sure he thinks I’m going to write about the trip and how awesome it was – and I could certainly do that.  However, this blog is about autism…so I need to include some information on how the spectrum affected our trip.

Service projects are of great importance to me and every summer since they have been born I have tried to come up with a project ‘greater than them.’

On May 20, 2013 an EF5 tornado touched down by Newcastle, Oklahoma and traveled through Moore, Oklahoma.  It was reported that there were 24 fatalities and 377 injured in the storm.  It was the first ‘real’ tornado coverage my children had seen (or could remember).

My children were devastated – Tucker was most concerned that two elementary schools were destroyed.  As we sat at the table talking about the storms on May 21, my children had a great idea.

Tucker, “Mom, we should send our school supplies since we won’t need them anymore.”

Estelle agreed and also remarked that she had plenty of friends who would probably give their ‘old’ school supplies.

Of course I thought this was a great idea!  Maybe we could get a couple of boxes of supplies to send to Oklahoma.  Then Estelle asked, “Mom – can you put it on Facebook and see if other people will donate?”  Sure…why not?

Why not?

That was the beginning of a six-week long project of insane proportions.  Children from all over Iowa and Minnesota gave their ‘old’ school supplies on the last day of school to our project.  The support was remarkable.

So…what does this have to do with autism?

Check out the following pictures…

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One would think the chaos would have driven my highly structured boy mad.  It didn’t though – it was a constant project providing constant movement.  Boxes and boxes and boxes of pens, pencils, rulers, crayons.  Boxes and boxes and boxes that needed to be dumped, sorted, and repackaged.

If that wasn’t a great job for a child who thrives on order, I don’t know what is.  He was in heaven.

Five weeks of sorting and repackaging.

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Five weeks and plenty of sweat later we ended up with 421 school bags with binders, notebooks, pencil cases, pencils, pens, erasers, crayons, markers, kleenex, folders, scissors – anything that a child would need to get started in an upcoming school year.  We estimated each full bag at $50 (including the cost of the ‘gently used’ bags) thus our donation totaled over $20,000.

A very generous man in our community donated the use of his trailer for us to haul all of this to Oklahoma.

So, again – what does this have to do with autism?  Yes, the sorting and organizing was right up his ally.  Here he is getting ready to pack bags.

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You know what wasn’t ‘really’ awesome and tried my patience?  The quality control person on bag #250 after five weeks…seriously.  Throw some stuff in the bag and call it good.

You know what actually was really awesome?  The quality control person on bag #251 that made sure each and every child received the same materials.  Making sure that EVERY single bag had the EXACT same pieces.  That EVERY single pencil-case had the EXACT same number of pencil top erasers, colors, pencils, and markets.  EVERY bag had the correct number of folders and notebooks.

It’s the thing about the spectrum – it seems every thing that can be irritating is also a phenomenal quality.

Feeling intensely is better than not feeling.
Tasting extremely is better than not tasting.
Making sure every child has the supplies they need is WAY better than a child missing crayons or markers.

Appreciating opposites…that’s what life on the spectrum is often about.

If you are interested in this project and have a few minutes – here is a video we put together after the project.

Day #316 – Certificate Is In The Mail

My ‘Mother-of-the-year’ certificate is in the mail.  I’m sure of it.

Actually….not at all.

Today, I failed as a parent.  It isn’t the first time and it definitely will not be the last.

As many of you know I constantly struggle with my guilt in providing Estelle enough attention.  These posts describe some of that struggle.

Today was her day.

She has a playhouse that has been WAY overdue for carpet installation, decorating, and filling full of her good stuff.  We’ve transformed the space into her own escape – an art studio and reading nook.  It really is fantastic.

It doesn’t sound like I failed today, does it?

But I did.

I asked Tucker to help bring things to her playhouse and he did.  Then he disappeared.  I found him and gave him more direction.  He did what I asked.  Then he disappeared.  Once again I provided some more clear direction.  He complied.  Then disappeared.

That was the moment.  The moment I decided I wasn’t fighting it anymore.  She needed to be my focus.  She deserved to be my focus.  Every time I turned around I was providing instructions and reminders to him instead of really focusing on her.

How did I fail?

6 hours.

Tucker had at least 6 hours of screen time today.  It could have been more – I actually just don’t want to count beyond 6 hours.

6 hours in front of a screen…

Watching YouTube
Playing XBox
Watching television
Playing on the computer

6 hours.

In that 6 hours I paid full attention to Estelle.  She got all of me and it was fantastic. Dare I say, phenomenal.  We played, we laughed, we sweat a lot (laying carpet in a non-air conditioned playhouse when it’s 85 causes ‘hot mess’ issues).

6 hours.

Want to know why my certificate is NOT in the mail? Because I don’t feel guilty.  I don’t feel bad.  I don’t have any shame.  None. Why?  Because that was also six hours that I did nothing but pay attention to this blonde curly cutie.

6 hours well spent.

6 hours with the neurotypical sibling…until it came to having her potatoes for supper.  These are her potatoes. She chose the seeds, planted them, and dug two hills of them yesterday.

While eating she says, “I love the taste – but I really hate the noise that is made when you open your mouth and chew the mushiness.”

I just laughed and she asked, “That’s a sensory problem, isn’t it?”  I nodded.  Then she giggled and said, “We just can’t get away from Tucker can we?”

We laughed together…what a wonderful six hours it was.

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Day #315 – Intentionality

No, I wasn’t angry at the nurse.

A reader emailed me and commended me on my ‘calm’ reaction to the nurse yesterday (Read Day #314).

That was very kind and I am honored to receive such a compliment.

Here’s the deal though…

For me, it is and always has been about intentionality.

I say stupid things.  I know I’ve hurt people.  I hope those people forgive me.  I can guarantee that my intention was and is NEVER to hurt someone else.  I can say that ‘never’ with 100% certainty.

Believe in the best.
Take the high road.
Don’t go to the mud.
Two wrongs never make a right.
You catch more flies with honey than vinegar.

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These are all phrases said MULTIPLE TIMES while I was a child.  This is the reason why…

For me, it is and always has been about intentionality.

That nurse?  She did not mean to say it like she did.  She did not mean anything by it.  I am positive 100 times a day she says, “Any problems but diabetes?”  “Any problems but arthritis?” “Any problems but psoriasis?”

What she said was out of pure habit.  She did not INTEND to hurt or demean Tucker.  That I’m sure of.

How am I sure?

I guess I can’t be – but I just believe it to be so.

This is why I advocate.

Maybe it’s my own naiveté, but I truly believe that the wide majority of people do not want to hurt each other.  Sure – there is always a bad seed in the bunch, Tucker’s Sidekick the Fat Theatre Chick certainly showed us that.  It was certainly hurtful.  Honestly, it hurt quite a bit – but then I spent some time thinking.  Thinking about what made that person so hurt, so angry, so vengeful – and I thought about how lucky I was (am).  I don’t have that kind of hurt, anger, and vengeance in my heart.  I’m thankful for that.

I advocate because I truly believe that with education people will learn, people will understand, people will develop compassion.

Let’s be honest- the unknown is scary.  Whether it’s not knowing if you have a job or entering a dark room – it’s always a bit scary.  The fear is often to protect us and propel us into some sort of action such as looking for a new job or having our senses on high alert to strike our.  Having knowledge helps us remain calm and thoughtful.

I didn’t react because a strong reaction rarely (if ever) helps.  Anger breeds anger.  Hate breeds hate.  Anger and hate met with understanding and compassion?  Anger and hate met with educating and advocating?  That is when real, meaningful change can begin to occur.

That personal change is quite intentional. That personal change is intentionally positive. That change sparks an understanding.  That change sparks change for one person…and then another, and another, and another.

Until one day the majority of us learn.
Until one day the majority of us understand.
Until one day the majority of us develop compassion.

Let us open both of our eyes and begin to learn from and with one another.

Let it begin with you.

The next time someone says something hurtful, check for intentionality. Then advocate, explain, teach – open another’s eyes.

Let it begin with you.