What message does it send?

By writing this, I am not trying to be critical of other parents and the decisions they make in this situation.  I also want to make it known that I understand that every child is different.  And every situation is different.  And that what may be the best for one child is not necessarily so for another. 

And one other little disclaimer…what follows is my opinion based on my experience, of which I don’t have a lot.    I have only four years of experience as a mother of a child with a disability.  And we have only just entered the world of education and school and homework and projects and grades and all that comes with it.  So I reserve the right to change my opinion as my life becomes more rich with experience.  I don’t think I will.  But I never like to say never…     

Here goes…

Henry is a very smart 5 year old little boy.  He learns quickly.  He is outgoing, and confident, and happy.  And Henry is hard of hearing. I am well aware of the fact that that puts him at a disadvantage.  I don’t understand it completely.  I hear.  I don’t know what it’s like to not hear well.  I don’t fully understand what he has to do to keep up with us hearing people.  But I do know that it is a significant effort.  And I do know that he will have to work pretty darned hard to do some of the things that most of us do without even thinking. 

When I originally wrote this, I stated that teachers in our county are able to grade children with an iep on an adjusted grading scale.  What I have learned since is that children with ieps may have an adjusted curriculum.  Yes, the two are different, but in the end, they have the same effect.  And they both lead me to the same conclusion.

To be honest, I don’t even know what an adjusted curriculum is.  What is the reason for, and what are the consequences of an adjusted curriculum? I don’t know.  I don’t know which children qualify for this “adjusted curriculum.”  Does it have to be written into the iep?  I don’t know.  Are all children with ieps considered for this?  I don’t know.  (And frankly, I wonder how it is that I haven’t even heard of this before now.) 

I don’t know enough about it, clearly.  But it really got me thinking about Henry’s education, his life, his goals, and through what lens I want him to be viewed.  Yes, he has a disability, but no one should let that label cloud their view of him.  It also got me thinking about people, and how we treat each other, and how something as wonderful as compassion can evolve into something unintended.  Something that sends an unintended message to a little boy. 

I don’t know when we began trying to make everything fair.  Life isn’t fair.  Sometimes it is terribly unfair.  Is it fair that Henry doesn’t hear very well?  No.  It’s not fair.  That is his challenge.  But he has gifts, too.  We all have gifts.  And we all have challenges, granted that some are much, much greater than others.  The reality is that people are different.  Kids are different.  Some kids are athletes.  Some kids are leaders.  Some kids are social butterflies.  Some kids are smart.  Some kids are creative and artistic.  Some kids will change the world with their kindness.  I want my kids to discover their own gifts, and understand that those gifts, along with the challenges they own, are what make them who they are.  I want them to learn to live with and overcome their challenges, and I want them to use their gifts for good.  These are the ideas I believe in.

But then we do things as adults to try to make all children the same…make everything fair.  Why do we try to even everything out?  Do we make the world a better place?  Do we make things fair by doing so?  And where is the fairness for those kids that really excel as athletes or scholars or artists?  Aren’t we taking from them at the same time we are giving to others?

What message are we sending to this little boy of mine?  What message do we send to his siblings, and his peers?  I mean really, really think about this…  He has a disability.  If his curriculum is changed based on the fact that he has a disability, what does he learn from that?  Are we telling him he’ll never be on the same level, no matter how hard he tries?   

How would I explain to my son that he isn’t quite good enough, smart enough, fast enough, strong enough to do this on his own, just the way he is?  I have spent the last four years since his diagnosis telling him that he IS enough, just the way he is.  And I believe that.  And if he IS enough, just as he is, then why is there any reason to even things out?  I wonder what unintended consequences this all has.  I wonder what he learns, and what other children learn from situations like this. 

I don’t want his successes muddied.  When he succeeds, I want him to be proud of himself, and know that his accomplishments are all his own.  He will know how hard he worked for something, and he will appreciate it.

And Henry is going to have to work hard.  Harder than most other children.  Yes. 

But he will.  And he will know that he did it. 

He did it just the way he is.

What I want.

I can’t quite tell for sure

what is wrong.

But you are not you.

You collapse on the couch.

An unhappy lump.

I stroke your hair and your little boy back.

You shiver in your sleep

and now I know

why you have been so…

prickly.

What I want is to hold you.

But your baby sister wants Mama.

Your baby sister wants chapstick.

Your baby sister wants markers

paper

milk

snack

anything.  She wants anything other than

to let me sit

and be with you.

And your big brother needs help with his spelling.

And supper…I have to make supper.

Laundry.

Dishwasher.

Smears and spills and sticky stuff.

And all I want is to sit down

and pull you onto my lap

and kiss your forehead

and wrap my arms around you

until you feel better.

What I want is to hold you

but I can only manage a glance your way as you wake.

You are the most beautiful thing

and the most pathetic

and even now you want to help me.

Help me empty the dishwasher.

Help me set the table.

Help me get Ella in her seat.

Henry.

You make me want to be so much better.

Tonight I watched you 

feverish…sleeping…

and sadness filled me for what I couldn’t give you today.

I fail daily

to be the mother you deserve.

That all of you deserve.

I don’t know how to do this better.

But tomorrow I will try

Again.

Fall Ball

You should see him out there.  He is something else, let me tell you.  And check out the face he makes when he runs…but only when he runs fast.  I never noticed it until I looked at the pictures. 

Boy do I love this kid. 

Go here for more Wordless Wednesday photos…

Monday

Well, it was a weekend full of yuck.  I felt miserable.  Luckily The Man came home early on Friday to help me make his birthday dinner.  I started on the dessert and realized that there was no way it was going to be ready to eat with our supper–it had to chill for 4 hours after cooling to room temp (which took three hours).  So we had brownie sundaes instead, and told ourselves we would eat the pumpkin cheesecake with gingersnap crust for breakfast on Saturday.  Which we did.

Then Ella threw up because I gave her a bite of shrimp and I forgot that I think she’s allergic to shrimp because she always throws up when she eats it.  Brilliant deduction, right?  So we were both up half the night with vomit and vomity laundry. 

Saturday morning the weather was gorgeous.  I went to Henry’s t-ball game (picture to follow), and felt gross.  It actually took my mind off of being sick for an hour though, watching Henry instruct each of his teammates to throw the ball to him if they got it, so that he could get an out.  He’s nothing if not confident.  Good for him.

I came home, ate some lunch and put Ella down for a nap.  Then I watched the Hokies online because the game wasn’t televised.  They won.  It wasn’t the best performance.  But they won. 

Then I took Kate to a party where they did her hair all cute and funky with twists and braids and sparkles.  And there was some blue eyeshadow involved.  A little thick, imho, but it was cute for a little girl playing dress-up.  I was exhausted.  While the party was going on, I did a little shopping.  And I coughed a lot.

Sunday morning I felt gross.  Or gross-er if that is possible.  I did some laundry, made a grocery list, hung a fall wreath and took a nap.  (It wasn’t really a nap.  It was more like rest.  And it wasn’t even very rest-y.  Because I couldn’t breathe.)

Then I went grocery shopping.  That was un-fun.  I have to do it, though, because I’m a freak about the food we buy, and I get annoyed when The Man shops because he gets the wrong stuff.  I make life so easy for myself, don’t I?

Then I came home and did more laundry and read books with Ella while The Man made supper.  We ate, showered the kids, read more books and tucked them in bed. 

I searched for about an hour on this computer for a folder of pictures that is apparently gone.  (Did I mention that I have a new computer?  Yeah.  I have a new computer.  The other one croaked.)  I read blogs and went to sleep.  

Today, I woke up with a headache.  I’m tired.  I don’t feel well.  And I have a full week of stuff to do, not the least of which is restoring a bunch of accounting programs.  Which I have been putting off because I dread it.

Before school, William argued with me about wearing a coat.  It is 52 degrees.  I said wear a sweatshirt or a light jacket.  He couldn’t find his sweatshirt.  So he had to wear a jacket.  (I guess that is another instance of how I ruin all the fun around here for him).  This was like a repeat performance of Friday morning.  Only this time I kept it together and hugged him and told him I loved him and completely ignored his anger.

Then I got home from the bus stop, and the first thing I notice is Kate’s homework folder that she was supposed to bring to school.  And I think very briefly about bringing it up to the school for her.  But then I decide that she has to take responsibility for her work.  And it makes me almost cry because she is typically so responsible.  And I think she left it out for me to sign so it’s half my fault.  But she should have completed it before this morning, 5 minutes before we’re supposed to leave. 

Now I’m sitting here, and the reality of it being laundry day creeps in and I know I have a lot of laundry to do.  The washing, the drying, the folding.  The piles of laundry everywhere.  I am swimming in the every-day mundane tasks of motherhood.  Normally, I feel joy in the mundane.  But today, it just feels overwhelming. 

Ella is beside me.  I watch her squeeze her bagel and make a complete mess of the cream cheese and think she is just the most precious thing in the entire world.  And my.heart.leaps.  Wow.  I am lucky to be her mother. 

And then Henry asks me if I want to see his muscles.  How glad I am that I am a mother of boys. 

That was what I needed.  A God-sighting.  Right there.

Recess

So when the kids got home from school on Tuesday I asked them about their first day of school.  I was particularly interested in what Henry had to say about his first day of kindergarten.  (Especially considering I forgot to put the FM receivers on his hearing aids so that he would actually be able to follow and like, you know, hear, during class.  Have I ever mentioned my brilliance?)

Me:  Henry, did you go outside at school today?

***side note:  often in our kindergarten classes they play outside in an enclosed blactop area…no playground equipment…so they can play kickball or other games like that)***

Henry:  Yes.

Me:  Who did you play with? 

Henry:  No one.  I just stood there.  (Okay, right about there I just needed to hoist my heart back up from my stomach into it’s normal cavity real quick before I continued on with my questioning). 

Sad Me:  Well, what were the other kids doing? 

Henry:  They were playing with all the balls so I didn’t have anything to do.

Sad Me:  Did you ask if you could play with them? 

Henry:  Yes and they didn’t want to.  (Okay, are you trying to kill me Henry?  I now feel totally and completely horrible…)  Henry continued on:  There weren’t enough balls and they didn’t want to share.  (Hooligans, they were.)

Sad Sad Sad Me:  What were all the kids without balls doing?

Henry:  They were just standing there, too.  (So I now have this sad picture in my head of a bunch of 5 year olds, nervous and sad and lonely, moping around for 15 minutes with nothing to do, while the three street-toughs with big red playground balls run around joyfully not sharing.  Yes, I have been known to mingle with drama now and then.) 

The next day he came home with two scraped up knees and a bloody elbow.

Because they played tag at recess today.

He fell down.

He got some booboos.

He cried.

He got bandaids.

He was all better.

In summation, scraped up extremeties + band-aids = a good day in kindergarten.  At least for little boys. 

And also, little boys with band-aids on their knees are really stinkin’ cute.

Fly

Off you go.

And here I stand, hoping that the other parents don’t see the traces of my tears. 

I watch you step onto that big bus.  Watch you look so small.  Too small to go.

I want desperately those days when you were silent…when you were round and soft…when you had red curls falling on your face…when you.were.here.  With me.   

But I know that your little wings are ready to learn to soar.  Every little thing about you is ready. 

Don’t forget to wash your hands before snack.  Don’t forget your manners.  Don’t forget to not pick your nose.

Don’t forget that I’ll be here, waiting for you.  I’ll always be here.

Now fly, little boy. 

Soar.

I’m So Very Sorry

I just want to take this moment to apologize to the two young ladies who will eventually marry my boys.  Because hunnies, they are never ever ever ever ever ever ever going to master the fine art of putting the lid down.  Nor will they flush consistently.  Nor will they admit it when they’re the one who didn’t flush. 

Seriously, I will walk into the bathroom and the lid will be up and the water will be, um, not colorless, and no one will admit to being the one that did it.  Either that or they’ll blame each other. 

Did I mention the time I caught them “yellowing the water” together?  This was quite some time ago.  I 86′d that behavior.  But that’s normal behavior, right?  I mean for boys, that’s normal, right?  Anyone?   

Oh, and Ella drew a picture of poo, isn’t that nice?  I don’t know where she came up with that idea.  Truly.  Not one of the other children has ever drawn poo.  At least not that I can remember anyway. 

I swear we are civilized.  I swear it.  I have the pretty smelling soaps and fresh towels and I make them wash their hands.  I even put product in their hair.  And I made snickerdoodles today.  Snickerdoodles are civilized, right?

Worry

A mother worries over her children.  And I think when a mother has a child with a disability, she may worry a little more over that particular child than the others.  At least I know I have done that now and then.  Sometimes it is justifiably so, sometimes not.  The past few weeks have been a little bit like that for me.  Kindergarten is starting for Henry, and I, like many mothers of children starting kindergarten, am a fretful mess of tangled up concerns and fear and protectiveness and what-ifs for that little boy. 

And so I worry.  And then something happens to remind me that this little boy is…well…Henry.

Last week, while we were out in the wilderness we went up to the lake to swim.  There were a few other families there, too.  William and Henry were throwing the frisbee in the water, and a couple of little girls came over to join in…girls that we didn’t know.  William bugged outta there pretty quickly.  

But Henry…have I mentioned how charming Henry can be?  Henry played with the girls.  He had the frisbee, and he ran around taunting them with “come on girls, try to get me!”  He held the frisbee out of their reach and laughed his laugh (which totally makes me laugh while I’m writing this).  And the three girls were all running after him, squealing and laughing and trying to get my Henry.  He didn’t know them.  He couldn’t hear them.  But no matter.  He was comfortable.  He was so confident.  He was happy. 

And there it was…the lesson.

I. Will. Worry.

And then I will look up and see Henry.  I will see him make friends.  I will see him be the center of attention.  I will hear his laughter.

 

And I will wonder what on Earth I was worried about.

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This is the Fodder.

We are back from the wilderness now.  It wasn’t really all that wild.  More on that later. 

Anyway, we’re back.  And of course, we had t-ball practice today and soccer starts Tuesday and cheering has been going on now for two weeks already and the boys need cleats and uniforms and school shoes and I still had some school supplies to buy.  And I noticed while I was packing for the wilderness that Henry really had very few decent shirts to wear for school so we had to get a few of those, too.  

Have you ever shopped with two little boys?  Mm-hmm. 

It was only slightly frustrating, to be honest.

Let me just share some of the comments I overheard:

***

William:  “Hey Henry, what if you tooted on Santa’s lap?!”  chuckles and snorts and guffaws.

***

Henry:  “Hey William, hold my finger.”

William:  “No Henry, I know what you’re going to do.”

Henry:  “Hey Mom, hold my finger.  I promise I’m not going to toot.  I’m just going to pretend to.”

***

Henry:  “Whoa, I just did a tooter.”  More chuckles.  More snorts, more guffaws. 

 

Can I just ask, what is it with the tooters?  

I live with small, insane people.  This is the fodder.

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The Outfield

The outfield doesn’t see a whole lotta action in kickball…

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