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.

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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A Piece of Him

One morning in Rodanthe I walked with Henry.  We collected shells and held hands. 

It was windy that day, and the waves roared, but he didn’t hear them. 

I wondered what that is like — not hearing the waves.  What it is like to walk onto the beach and not hear the gulls cry, or the wind gust or the sea crash on the shore. 

What is that silence like — you can feel the spray of the water, you can see it crest and watch it’s momentum heave it onto the ocean floor.  You can watch the wave dissolve into soft, swirling foam.  But you can’t hear it.  You have never heard it.  To you it is not a wonder.  To you, is does not roar.  It is a silent, sparkling, tangle of water.  And to you, that is normal.  I wondered what that silence is like.

And among all that wondering my mind found the place that is always there, but that I keep closed up most of the time.  The long-hidden disquiet resurfaces, ever so slightly, every now and then.     

Now, like I did when Henry was first diagnosed, I worry that he will feel isolated. 

But I don’t think he does. 

I worry that he will struggle. 

But I don’t think he will.

I worry that he will regret what he doesn’t hear.  That he will be angry that he doesn’t hear well. 

But he is so wonderfully perfect, just how he is.  I want him to grow up knowing that. 

I worry that he will be teased, or taken advantage of.  I worry that he will feel different. 

I hope he won’t.  But I don’t know… 

What I know is this boy.  I know he is happy.  I know he is confident.  (And he has the best freckles.)  I know I love him.  

And that part of him that doesn’t hear…it does not define him.  But it is a piece of him.  It is a piece of who he is. 

A piece of my Henry.  A piece of his wonderful.

On Being a Responsible Parent, Which Clearly, I Am Not.

One would think that having been a mother of a hard of hearing child for nearly 3 1/2 years, that I would be more, shall we say, responsible where the hearing aids are concerned.  Especially when the hearing aids belong to a five year old boy.

Yes.  One would think.

One would think that when I am frustrated with the repeating and repeating and repeating of questions, answers and statements all weekend long, that I would think to listen to the hearing aids that my 5 year old little boy wears.

One would think.

One would think that rather than be frustrated with my five year old little boy (who doesn’t seem to be hearing me correctly) that I would investigate the reason, rather than become frustrated with a little boy.  Who can’t hear me. 

One would think.

But not me.

For I am rare.

I became frustrated.  

And told him all weekend, “you need to listen better, Henry.”

To be fair, I did check the batteries. 

And I even cleaned out his ears really well.  They were pretty clean to begin with.  (Just thought I’d throw that in there.) 

Sooo.  On to the troubleshooting section of the hearing aid brochure.  (I love the troubleshooting section of things.)

Apparently the “wind and weather” protectors on hearing aids are not to be ingnored.   

The wind and weather protectors on Henry’s hearing aids had become so clogged that very little sound was getting through to the microphone.  

Oh, and by reading the brochure, I found that they should be changed every few months.  Alrighty then. 

It has been two years.  Mm-hm.

Nice.  Very nicely done, Mom.

A responsible parent listens to the hearing aids daily to make sure there isn’t a problem. 

You know, like a reduction in clarity.  Or decreased output.  Or whistling.

Maybe I should try that.