learning to live and love from a new perspective

Archive for March, 2014

Sparkly Owls, Peaceful Planes, and Other Six-Year-Old Stuff

Tuesday is G’s “share” day in Kindergarten. Every day during morning meeting, three or four students get to tell about something exciting that’s going on their lives, or bring in something from home.  Most kids can do this spontaneously.  G needs a little extra support, so we usually talk about it on Monday night.  If there is something that G wants to share, I write it in his Communication Log so that the teachers can help fill in the details if G gets stuck on the words.

Most of the time on Monday night, after a few minutes of discussion, G will finally settle on one of the topics that I suggest. “Why don’t you tell your friends about our trip to the Children’s Museum this weekend?”  “Maybe your friends would like to see the picture you drew of your race cars?”  Last Monday night, it was a different story.  I brought up the topic of share day at dinner.  Without a word, G left the table and raced up the stairs.  He came back moments later clutching the stuffed owl he had received for his birthday. “I bring my owl,” G crowed gleefully.  “I bring my owl because he is sparkly, and squaggly and byooful!”   (Ed note: squaggly is a word G made up that means super cuddly.  Byooful is G’s pronunciation of the word beautiful.)

Here’s the thing.  G is absolutely correct.  G’s owl is beautiful.  It is one of those decorate-it-yourself animals.  G pulled out all the stops when he decorated. He turned it from simple pink and purple fabric into an explosion of hearts, glitter and sparkle.

For the record, I don’t believe in boy’s toys or girl’s toys (or clothes, or professions, or academic interests, etc.) I believe that all kids should have the freedom to choose the things that interest them.  I also believe that kids should be taught to respect the choices their friends make.  I firmly believe that when a kid feels like there is something wrong with him because he does not share interests with his peers, and he feels he has to pretend or lie in order to gain acceptance….   It’s a recipe for all sorts of trouble.  I would not want my child to tease another child for their choices in toys, activities and clothes.  In my house, we talk about differences and the things that make each of us unique.  But that’s my house.  It made me a little nervous sending my six year old boy to school with his sparkly pink owl…  but I sucked it up and sent it anyway.

 

Here’s how the conversation went at drop-off on Tuesday morning.

G:  I brought in my owl for share today.  He’s so squaggly and byooful!

Teacher:  That’s great.  I’m sure your friends will be happy to see him.

G:  Some boys like things that are cool.  I like things that are byooful.

Teacher:  I know lots of boys who like things that are beautiful.

G:  Yeah, me too.  I like things that are byooful too.

And that was it.  As parents we can talk until we’re blue in the face about acceptance and understanding…  but kindergarten is where the rubber meets the road.  In my mind’s eye, I can picture G sharing his squaggly, pink owl with his friends.  I can picture his teacher encouraging the kids to ask questions and admire. And I believe that the seed of believing that it’s okay to like whatever it is you like is planted within each of those children.  We don’t have to amend or censor the things we love, even if those things don’t fit in to what other people think is cool.

Also for the record, G has a wide range of things that interest him…  as evidenced below.

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Here is the infamous squaggly pink owl.  He is inscribed, “I am wearing love glasses because I love you” and “I love you so much” and “We love each other”.

 

 

 

 

 

 

P1020348Here is a picture of G’s fighter squadron plane.  When he learned that the purpose  of the plane was to shoot at other planes during a war, he renamed it the Peace Plane and wrote “I love you” on the wings and tail.  Now instead of fighting, the Peace Plane spreads love and joy.

 

 

 

But if I were to leave you with the impression that every waking hour is filled with peace, love and sparkly owls, I wouldn’t be telling you the whole story.  As a parting shot, I leave you with a picture G made while he was practicing his surveying and graph skills at home.  The survey question is “How much of  you like butts?”  The survey results were (not surprisingly):  the two kids in our house like butts, and the two grownups (“gronups”) do not like butts.  These results have launched G on a campaign for a new kid in our house.  So there will be more people who like butts.

 

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And that is my wonderful six-year-old in a nutshell.  He loves beautiful things.  He wants peace not war.  And he likes butts.

Why I’m Not Lighting It Up Blue This Year… And Why I’m Sad About It

A little over three years ago, G was diagnosed with autism.  This diagnosis changed our lives in many ways.  The news was hard to digest.  One challenge we had to overcome (and that we still struggle with on a daily basis) is how to talk about autism.  How much to share, when and with whom?

In the days and months following the diagnosis, we shared the information with our close friends and families.  We shared it with people who were already close to G. They knew about his struggles.   They knew he spent almost fifteen hours a week in Early Intervention.  They knew he was behind in all of his developmental milestones. They knew…  and they loved him.  All of him.  Sharing G’s diagnosis with these people was a natural.  It opened the door to even more love and support than we were already feeling.

But what about the wider world?  As a teacher, I’d been privy to many conversations about the downside of labeling students.  Sometimes a label can open the door to services and support. Sometimes a label can cause a child to be perceived in a negative light, and can limit what people think he can do.  Sometimes it limits what the child himself thinks he can do.

So, within our immediate circle, we shared openly about G’s autism, and began the process of learning ourselves what that meant. As for the wider world, we were quiet.

After about a year, I began to feel the world begin to settle into a new kind of normal.  G had turned three.  He aged out of Early Intervention, and made a smooth transition into our town’s integrated preschool program.  Every morning, I dropped him off at his classroom – a class that was made up of fifty percent typically developing students and fifty percent kids with special needs.  Every afternoon, I picked him up from his Lunch Bunch classroom.  All of the children in G’s Lunch Bunch were there for the same purpose as G…  to receive ABA therapy.  All of the students were like G.  All of the parents were like me.  I didn’t need to make a choice to disclose or not disclose.  I had found my people…  and we had A LOT to talk about!!

I was learning a lot about autism.  G was making great progress at school, and I wanted to talk about it beyond my immediate circle.  But I didn’t know how.  I have a Facebook account.  I use it to share news about my family.  My posts were full of S’s accomplishments:  dance recital, new friends, learning to read.  G had many, many accomplishments during that time, too. He started greeting his teacher by name.  He requested a pair of scissors from another child.  He held my hand in the parking lot.  Thesewere HUGE accomplishments…  but they wouldn’t make sense if I didn’t share information about his struggles.

I felt like I was hiding something. In the two years since his diagnosis, I never once used the word “autism” on Facebook.  In the brief exchanges I had with friends outside of our immediate circle, I also didn’t use that word.

It was April 2012 when I first heard about Autism Speaks and Light It Up Blue.  I watched from the sidelines as people shared photos on line of blue lights, blue shirts, even blue wigs.  I read voraciously as people shared their stories.  But I remained silent.  I remained silent… but on that day I made a promise to myself.  If I hadn’t already, then by April 2013 I was going to come out of the autism closet and share stories of my own.

Sure enough, the months passed.  March 2013 was coming to an end.  I mustered up my courage.  I marched into the hardware store and purchased two blue bulbs.  At home, I swapped them for the regular bulbs in our porch lights, and waited for twilight, when I could get a decent photo.

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I posted it that night, with the following comment:

 Today was Autism Awareness Day. We chose to Light it Up Blue at our house. It has been a little over two years since G was first diagnosed. Living with autism means struggling with some things that are easy for most people. It also means slowing down and experiencing some things that others rush past. I’m thinking about all of that today. I’m also thinking with gratitude of the many people (professionals, family and friends) who are supporting G (and us!) on this journey.

And that was the beginning.  That post got close to 100 likes and comments. I felt the love and understanding rush in as if a dam had burst.  My days of keeping quiet were over.

Autism Awareness day is coming up.  There is controversy in the autism community at the moment. Autism Speaks has lost the support of many in the autism community, including me.  They do not represent the views of autistic adults (there is no representation on either the staff or board of Autism Speaks). Their budget goes largely to finding a cure, rather than providing services.  And their rhetoric raises fear, rather than offering hope.

So, I will not Light It Up Blue this year. But, I will try to find another way to reach out and share my experiences.  I hope that for those who are recently diagnosed, who are sitting quietly on the sidelines trying to make sense of it all, it will help them to read my stories.  I hope reading my stories will encourage them to reach out, open up, and find the support that is waiting in their own communities.

Our School is a Friendly Place

A million years ago, I used to be a classroom teacher.  First sixth grade (how did I ever do that?!?), then fifth.  During my time in the classroom, I became more and more aware of how the focus in education was strictly on academics.  As standardized tests dominated the educational landscape, there became less and less time for anything else.  I also became aware of the kids’ emotional and social needs that were going unmet.  I could plan the greatest math lesson in the world, but if the kids came back from recess riled up from a playground conflict, nobody was going to learn anything.  But to take time away from academics to help the kids work through the problem?  Unheard of.  As a classroom teacher, I felt powerless in the face of the turning tide of standardized testing.  I left the classroom for graduate school.  My goal was to learn more about how schools could become places that support kids’ social and emotional development, alongside academic learning.  Grad school was an awesome experience, and I had the opportunity to research and work alongside some of the leaders in the field of school reform.

The passion that I felt as a teacher about supporting kids’ emotional development has intensified about a million times now that I am a parent.  There have been three high school suicides in our town this year.  Three.  That fact chills me to the core.  There is a growing trend of depression and anxiety among teenagers in our country…  and it is not somewhere out there in someone else’s back yard.  It’s right here at home.

Schools are the place that kids spend most of their time.  The school climate can bolster or hinder children’s social development.  As the parent of a girl, I worry about cliques, and “mean girl” syndrome.  I don’t want my daughter to be either the target or the perpetrator of the social bullying that is common among girls. 

 As the parent of an autistic child, I worry about bullying.  One of the characteristics of people with autism is that they misread social cues.  I’ve read lots of stories about autistic kids becoming the target of cruel jokes.  Often, the kids don’t even realize they’ve been taken advantage of, because they perceive the other kids’ overtures as friendly.

But here’s the good news.  In my years of working on school climate issues…  I’ve never seen a school that warms my heart as much as the school where my kids go now. From the moment I enter the building, I notice the details.  I notice the principal who stands just inside the front door each day, greeting students with a cheerful hello.  I notice the prominently placed list of school expectations (phrased in clear, kid-friendly, positive language).  I notice the classroom meetings, in which kids are encouraged to solve classroom problems in a collaborative and respectful manner.  I notice the long roster of well-trained classroom aides and in-house substitutes…  so that even when the classroom teacher is sick or at a meeting, a person who is familiar with the kids and with the routines is there to step in.  I notice the many opportunities afforded to all parents to be involved in meaningful ways in their kids’ education.

 There are things in our culture (both the wider culture, and right here in our town) that are causing the rise in depression, anxiety and even suicide among teens.  As someone who cares deeply about public education, I hope to return to work sometime soon into a role that will support our schools in their crucially important role in turning the tide.  I feel profoundly motivated (and blessed) by the fact that my kids’ elementary school is taking so many important steps towards creating a positive and emotionally healthy school climate.

  One parting anecdote:  This morning, I observed a teacher escorting a prospective student to a pre-Kindergarten screening.  “You are going to like coming to our school next year,” I overheard her saying.  “Our school is a friendly place.”  Yes.  Yes, it is.

Supervision

G has just come into the kitchen to tell me he has gotten dressed ALL BY HIMSELF!  He is bouncing an inch off the floor–  he’s so proud.  I’m proud, too.  We’ve been working on this for a while.  It’s a skill that’s been broken into small steps, taught, re-taught and drilled over the course of two years.  That being said, it’s a skill that hasn’t been fully mastered.  There are things (like buttons and snaps) that still present a frustrating challenge.  Then there’s my personal favorite…  the double underwear dilemma.  Which is where we find ourselves today.

 

G:  Mommy, guess what?  I got dressed ALL BY MYSELF!

Me:  G, that’s awesome!  I’m so proud of you!!

G:  Me too.  I’m so proud of me!

Me:  G, I have a question.  What’s that peeking out of your pants?

G:  (Examines his waistline).  That’s my underpants.

Me:  Yeah.   How many pairs have you got there?

G:  (Looks a little closer.  Counts.).  One, two.  I’ve got two!

Me:  Exactly.  Is that the right number for underpants?

G:  It’s the right number for socks.

Me:  Yes.  But is it the right number for underpants?

G:  No.  Underpants should be one.  One is the right number for underpants.

Me:  Hmmm.  I wonder what happened.  I wonder if you forgot to take off the robot underpants from yesterday before you put on the new green underpants for today.  (Ed note:  G is totally enjoying this conversation.  Underpants is one of his favorite words.)

G:  That’s a problem.

Me:  It’s not a big problem.  What do you think we can do about it?

G:  I can try again?

Me:  Sure.  Maybe we can use some supervision this time. 

G:  What’s supervision?

Me:  It’s when somebody’s watching you.  Go find dad and see if he can give you some supervision.

 

G leaves the kitchen.  He returns five minutes later.  I check his waistband.  I can see we’ve made great strides towards solving the problem…  but we’re not all the way there, yet.

 

Me:  G, it looks like you’ve got the right number of underpants on!

G:  That’s right.  I’ve got one pair!

Me:  I have one more question.  Do you have on the new green underpants… or the old robot underpants from yesterday?

G:  (peeking into his waistband to check it out).  Oh, no.  It’s the robot ones.

Me:  That’s too bad.  I thought Dad was going to supervise.

G:  Me too.  I knew I should have been watching him better!

Jealous

Remember how I was telling you a few days ago about G’s limitless curiosity?  How the books might crash to the floor or float to the ceiling…  and we better just give them a little nudge to find out what they’ll do this time?  How some days our life seems like one continuous science experiment?  Remember how I was telling you that our awesome teachers and specialists were helping us channel that inquisitiveness in a positive way?  Well, hold that thought…  because in the next day or so I will give you the full run down on our brilliant ABA therapists, and how they’ve been creating a safe and nurturing environment for our budding scientist.  An environment that includes projectile cotton balls, baking soda/vinegar volcanoes, and rainbow-colored snow.  Have I got your attention?  Good.  Well, hold that thought.  I promise I’ll come back to it.

This is the story about my other wonderful kid, S.  The one who arrived home from school minutes after our ABA session ended.  I’d just gotten most of G’s “experiments” cleaned up…  but the sink was full of festively colored shaving cream, and the air was thick with the smell of vinegar.  Clearly G was doing something fun and exciting while S was at school…  and she was MAD that she missed it.  Moments after discovering that G got to make a VOLCANO while all she got to do was go to SCHOOL, she stomped into the living room and hurled her frustrated body onto the couch.

I took about seventy deep breaths, then followed her to the living room and sat down beside her.

Me:  It looks like you’re feeling mad.  Do you want to talk about it?

S:  Why does G get to do everything fun?  It’s not fair!

Me:  Like what?  What does G get to do?

S:  Like make a volcano.  And he doesn’t have to listen when you tell him to do something.  And he got more time on the iPad yesterday than me.

Me:  Wow.  There are a lot of things making you mad.  It sounds like you’re feeling like things aren’t fair.

S:  Remember when G got to go to that really fun place?  The one with the swing and the climbing structure?

Me:  I remember.  It was the physical therapy gym.  [Ed note:  When G was two I took him for weekly sessions at the physical therapy gym.  S had to come with us ONE TIME during a school vacation week.  This took place FOUR YEARS ago.]

S:  Remember how I really wanted to play in there, but I couldn’t because it was just for G?

Me:  Yes, I remember that too.  That didn’t seem fair either.

S:  I really wanted to play in there.

Me:  It sounds like you are feeling jealous because there are things G gets to do that you don’t get to do.

S:  I guess.

Me:  That sounds crummy.  What does it feel like inside you?

S:  In my head, there are all these different feeling rooms.  Right now, the “mad” room is filled up with one hundred people.

Me:  Wow.  It sounds crowded in there.  What about the “jealous of G” room?  I bet that one’s crowded, too.

S:  Yeah, that one has one hundred people, too.  That’s the most people that can fit in there.

Me:  Wow.  One hundred people in “mad” and one hundred people in “jealous of G”.  I wonder if we can do anything to get some of those people out?

S:  It’s not fair that G got to go to that gym and I didn’t.

Me:  I know.  It’s just one of those things that G got to do.  I wish I could change it, but I can’t.  Is there anything that I can do now?

S:  It’s not fair that G got extra time on the iPad yesterday, and I didn’t.

Me:  [I make an executive decision to ignore the reason that G got extra time on the iPad.  He needed something to keep him occupied while S got to participate in a rehearsal for the upcoming Multicultural Night at our school.  Something that G would want to do, but it is well beyond the reach of what he is capable of.  But that’s not important now.] Now, that’s something I can change.  Would you like some extra time on the iPad now?

S:  Okay.

Me:  How’s that “mad” room doing?  Is it still crowded?

S:  No, there’s only about 10 people in there now.

Me:  How about the “jealous of G” room?

S:  It’s always crowded in there.  There’s 53 people in there now.  That’s how it usually is.

Me:  Hmmm.  I understand how you feel.  You certainly have a lot of reasons to feel jealous of G.

S:  Yeah.

Me:  Is there an “I love mommy” room in there?

S:  Yeah.  That one has a hundred people in it right now.

Me:  My “I love S” room has a hundred people in it too.

And with that, S tucked the iPad under her shirt (where it wouldn’t be noticed –and envied- by G), and skipped happily up to her room.

Parenting siblings is a balancing act.  Jealousy is part of the landscape, no matter how hard you try to keep things fair.  Some things are inherently unfair, and it’s hard to keep things in perspective when you are the one that is feeling shortchanged–  especially if you are a kid.  I feel guilty ALL THE TIME about the extra time and attention that I give to G, and the impact it has on S.  I often twist myself into knots trying to think of ways to even the scales.  I’ve been trying to do a better job lately about accepting the fact that I’m doing the best I can.  I’ve been trying to accept that sometimes S is just going to feel jealous, and that’s okay.  She’s going to feel how she’s going to feel, and it doesn’t mean that I’m doing something wrong.  I can’t change the way she feels.  I can only be there to listen, and support, and help her work through the feelings.

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Birthday

Yesterday was a celebration of G.  His sixth birthday.  I can hardly believe it.

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My feelings about the day are hard to put into words.  I think I’ll walk you through it in pictures.

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G loves maps and globes…  so we decided on a “travel” theme.

On the left is a picture of the invitation.  (Apparently, the invites were a big hit with G’s friends).  Most of our kids‘ birthdays have been held at home…  and (drawing on my background as an elementary school teacher) I’ve been the entertainment committee.  It’s fun…  but it’s also a lot of roles to play.  Mom, host, entertainer…  it doesn’t leave a lot of room to actually enjoy the party.

So, we chose to bring in Big Joe the Storyteller.  Also, in the past, we’ve opted to invite

more kids than our house can comfortably handle.  While this has led to nobody feeling left out…  it’s also led to everyone feeling a little, well, uncomfortable.  We decided to have just a few friends.  Just friends from kindergarten.  Leaving a little space for everyone (including me.  including G.) to breathe. 

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G tells his new friend Big Joe that he thinks the stories are going to be so exciting they are going to pop everyone’s eyes out.  Luckily, that doesn’t happen.

It was a little hard for G to focus on the stories at the beginning.  There was a lot going on.  But eventually, he found his focus, and tuned right in.  It helped that Big Joe uses the words “burp” and “boogers” a lot.  Those are some of G’s favorites.

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Big sister, S, had a blast.  Here’s one photo of audience participation, sibling style.

 

 

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G had a quiet moment with Big Joe right before he left.

 

 

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Then, make a wish and blow out the candles.  (That’s the typical order.  G blew out the candles first, then said, “Oops, I forgot to make a wish!  Can I make one now?”  We decided that was acceptable.)

 

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Parting gifts for all our friends.

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Here’s G enjoying one more piece of cake before the day was over.

 

Good-bye five year old G!  Can’t wait to see what’s in store for Year Six!!

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Gobbledeegook

 Yesterday, I had to drag G out of the house on a last minute errand.  He was playing “Stack the Countries” on the iPad (FYI–  G is five years old.  He’s already memorized every state, its capital, major landmarks, and placement on the map from several intense weeks of playing “Stack the States”.  Now he’s moving on to world domination in “Stack the Countries”.  Quiz him sometime.  I guarantee you he knows more geography than you.  He surpassed me several months ago.  But I digress.)

Anyway…  G was playing “Stack the Countries” and I was cooking dinner.  I had everything sliced and diced, ready to throw in the pot when I went to the pantry and discovered a big empty space where the canned tomatoes usually reside.  My choices were to either scrap the whole meal (which was 75% complete) and start something completely different from scratch or run out to the grocery store and grab some tomatoes.  As an aside, I will say that the two years I spent living literally next door to Star Market (our apartment building shared a parking lot with the store) has wreaked havoc on my shopping/cooking habits.

So, off to the grocery store.  As you can imagine, I was feeling just a tiny bit grumpy about it.  On the way to the store, G initiated one of his scripts.  A script is a repetitive bit of dialogue where the same questions are asked and answered multiple times.  (See my post about Paradise).  I’m not entirely sure the function of these scripts for G…  but usually it means that his brain is engaged in processing a new bit of information.    Often the questions get tweaked a little as we talk, so he can gather whatever detail he is looking for, even if he can’t formulate the precise question he wants to ask.  Just a theory.

Today’s script was about the iPad.

G:  Mom, I was playing Stack the Countries.

Me:  Yes, you were.  You’re getting good at that game.

G:  Yes, I like that game.  When can I play again?

Me:  You’ve had a lot of screen time today.  When we get home from the grocery store, it’s going to be time to find something to do that’s not screen time.

G:  But why?  Why can’t I have so much screen time?

Me:  Because if you do too much screen time, your brain will turn into mashed potatoes and you won’t be able to do good thinking.

G:  (Pause.  Reset.)  Mom, I was playing Stack the Countries.

Me:  Yes, you were.  You’re getting good at that game.

You see where I’m going, right?  We ran the whole script, right to the part where I’m supposed to say, “Your brains will turn into mashed potatoes.”  Only, MY brains had turned into mashed potatoes about twenty minutes earlier…  and I got stuck on the word.  I just couldn’t retrieve mashed potatoes, so my lips started forming the first word that came to mind, which was “Gobbledeegook”.

That’s when I realized…  G’s probably never heard the word “Gobbledeegook” before.  Knowing G, and how he loves all things ridiculous and weird, he is going to love this word.  So I paused.  I met his eyes in the rearview mirror.  He was seeking out my eyes expectantly.  I said, “Because, if you do too much screen time, your brain will turn into…..  GOBBLEDEEGOOK!”

Sure enough, G started shrieking with laughter.  His body was shaking with giggles.  He met my eyes in the mirror again, this time.  His face was lit up with an enormous smile…  but his eyes held a question.

Me:  What is it?  Did you like that word?

G:  Yes, that was a SILLY word!

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Me:  It was, wasn’t it?  Did it sound like nonsense?

G:  Yes!  Nonsense!

Me:  Would you like me to say it again?

G:  Yes!  Say it!!

Me:  Gobbledeegook, gobbledeegook, gobbledeegook!!!

Now he’s laughing so hard, there are actual tears streaming down his face, and I’m afraid I might have to pull the car over and perform emergency CPR because he can’t get a breath in between the giggles.

It went on like that for twenty minutes.  I said “Gobbledeegook.”  He said “Gobbledeegook.”  We said “Gobbledeegook” together.  We whispered it and shouted it.  And, we did a whole lot of giggling.

Sometimes, things are so hard.  IEP meetings.  Behavior plans.  Epic meltdowns over minute changes in routine.  Sometimes it’s hard to persevere in the face of the struggles.

Other times, things are so easy.  To be able to find such happiness, such body-shaking joy… from ONE WORD?  It’s a gift.   My wish for G is that he will always have such easy access to the powerful feelings of delight and pleasure that he has now at age five.

And for me?  I hope I can learn from G’s experience of the world.  I’m happy to stand along side and participate in his exuberance.  However, it does raise an important question for me.  What are the things that get my joy flowing? And how can I get those feelings to reside closer to the surface the way they do for G?  I would love to get that rush of deep of emotion from a single word, thought or activity.  What is MY gobbledeegook?  Hmmm…..

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