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Tuesday, May 14, 2013

Giving the Butterfly Time to Emerge

This week’s Release the Butterflies post is about Peter, the kid who inspired this event. 

peter butterfly-001

This is Peter  He’s feisty.  He’s smart.  Puns roll off his tongue.

But math sends him running from the room.  His handwriting trails all over the page and well, the idea of getting him to sit in a chair for 30 seconds let alone an entire read aloud is laughable.  It’s a miracle that he doesn’t fall out of it all together.

Well, no, I guess he would have to actually be sitting in the chair rather than hovering an inch above it to fall out of it, right?

Peter is our special needs kid.  For a long time I was not willing to call him that. 

Oh yes, I would admit that he does have highly unusual skin.  For those of you who don’t know, Peter has a rare skin disorder called Lamellar Ichthyosis

But the thing about having a fairly visible and unusual thing going on is that there’s this danger of being seen as that thing.  I don’t want Peter to be that kid with Ichthyosis.  I have always wanted him to be Peter.  And so I tended to minimize the things that were different about him.

And I tried to see him as just a normal little boy who happened to have unusual skin.

But as time went on and he grew to be school age, I began to realize that Peter really is different.  And then my view of him started tipping in the opposite direction---I was going to pin down what was going on with this kid.

Did he have ADHD?  Was he on the autism spectrum?  Was he allergic to something?  Deficient in something in his diet?  Maybe his senses were just overloaded by that constant itchy skin?

I was going to figure out what was making my kid different.

And I was going to fix him.

Sounds ominous, doesn’t it?

I’m not going to speak for other special needs parents, because I’ve never been in anyone else’s shoes…but it pains me to see any of my children struggle, and somehow it hurts more when it’s this child, the child who was born with special challenges.  And so, yes, I wanted to fix things for him.

But with all my research and intelligent talk and experimenting with diet, I finally woke up to what I was doing---I was seeing Peter as a collection of symptoms and cognitive traits.

I was losing sight of the Peterness of Peter

I was concentrating so much on the areas he was struggling in, that I was missing the really big growing that was going on.  I was pushing too hard.

Hey, it’s scary when you feel like no matter what you do, your child isn’t getting it.  So, I’d push.  And he’d lock up.    And I’d become exasperated.  And he’d freak.  And well, I think you can see that it was an exhausting cycle with not much fruit to show for it.

So I started stepping back, giving him more room to play, allowing him to do more things his own way.

Secretly I was worried.  Really, I was.  But God speaks to me often, sometimes I even listen.  Ahem.

He has been telling me all along that Peter was who He wanted him to be.  And that he doesn’t need to be fixed.  He needs to be supported, appreciated, helped, yes.

But not fixed.

And sometimes growth takes more time and patience and less beating your head against a wall.  So I stepped back a bit.

In spite of doing less required “work” in the past few months, Peter’s made some incredible leaps and has actually been working harder and harder.  On his own.

065This child who has only been reading independently for a year has been reading more and more difficult books.  His favorite topics at the moment are Greek myths and mythological creatures.  In fact, he’s been writing out full narrations of the myths and even writing some of his own variations and brand new creatures. 

His memory is amazing and he will gleefully point out errors he spots in other books and cheerfully explain the difference between a basilisk and a cockatrice (you did know there was a difference, right?).

Peter is an artist, he has a real sense of setting a scene with just s few strokes and his comics he draws have a cinematic flair.  Just in the past few weeks, he has progressed from “writing” primarily comic book type stories to writing out stories long hand and inserting a small picture here and there. 

Last week, he wrote out an entire mystery story in long-hand on lined paper (I’m going to be sharing that story with you tomorrow, it’s our first “Math Mystery!”) in the neatest, most controlled handwriting I’ve ever seen him use.  And he used proper letter formation, this is a big step for him.

peter handwriting

His latest thing is creating stop-motion animation.  He conceives of the ideas, builds the figures and models, and takes the photographs.  His big brother helps him edit.  I think he’s doing pretty well for a 7-year-old.

I’m not saying that it’s unhelpful to find out what’s making your kid tick (or not), but that once you’ve got some supports in place, you can’t make him improve on some arbitrarily timeframe.

You’ve got to release the butterfly by allowing him to emerge when he’s ready.  Peter has time to grow into the Peter he is meant to be.  On God’s timeframe.


Don’t miss this week’s giveaway, a great program for kids ages 6-9 called Character Trails.


Release the Butterflies is about embracing our children as individuals, just as God created them to be.   A few friends and I will be blogging about this topic throughout the month of May.  This is also Ichthyosis Awareness Month.  You can find out more about Peter’s skin condition, Lamellar Ichthyosis, here. 

I invite you to read what my friends had to say this week:

Releasing the Butterflies.  Bug... by Nicole @ Schooling in the Sun

Hoping for the Butterfly by Chareen @ Every Bed of Roses

And I invite you to join us:


  1. Sorry it took me so long to finish my post this week! Thanks for a great series. I love hearing about Peter and his puns and thank you for being so transparent! Parenting a special needs kid is so hard, because we want to fix it!

  2. Thank you, Amy. One of the great things about online community is meeting and learning from other people who face similar challenges and understand what you're going through. None of my "IRL" friends have special needs kids---I think we are blessed in a way that we live in an information age. It can be very isolating to not have anyone to talk about these things.


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