Stepping Stones

I hadn’t wanted the Christmas vacation to end…I hadn’t wanted everyone to leave, signalling my return to adulthood and the reality that there was no one other than me that was going to actually clean the house and do the shopping, the cooking, the scheduling, etc.  No more cookies.  No more sleeping until 8:30.  No more lego marathons with Henry.  And when I say “with” Henry, I actually mean I pretty much have a lego marathon all by myself.

Henry: Hey Mom, want to do legos with me?

Me: Okay!  We could have a lego marathon!

Henry:  Yay!

Me:  We could build the entire Christmas village!

Henry: Yay!

We begin to build, sorting through thousands and thousands of legos as we go.  And then Henry says “Hey Mom?  I think I’m going to take a break.”

“Okay Buddy!” I say.

Only he never returns.

So I spend the next 4 1/2 hours finishing the kit all by myself.  And then, the next day, Henry says to me

Hey Mom, today let’s do legos all day!

Me: You said that yesterday, Henry.

Henry: No but today I really want to!

Me:  Okay!

And then once I’d tasted the lego elixir, he “took another break.”  Suckered. So basically I built the whole entire lego Christmas village over a three day period.  And with little assistance, I might add. Anyway…

Henry was sitting next to me last night, reading.  I looked at him, and ran my fingers through his hair.  I remembered the first book I read to him after he got his hearing aids.  He was a toddler. It was only then that I knew why he had hated reading at bedtime…he couldn’t have heard the words before.

I thought about his red curls.  And before he had freckles, the ivory of his skin, how soft it was.  And how round his cheeks were.  And his little fat belly.  We used to call him Pork Chop.  I remembered how afraid I was of what lay ahead for him. I thought his hearing aids would be a stumbling block.  Someone once said “the difference between stumbling blocks and stepping stones is how you use them.”  And I realized it then…

I am not afraid for him anymore.

Curveballs

It still surprises me when she comes down the stairs in the morning wearing her spectacles.  I am not used to them.  And even though she looks so ridiculously cute in them that I just want to squeeze her, I don’t want to be used to them.  I want Ella back — the Ella without bangs and without glasses and without eye-patches.

Last night she was outside blowing bubbles.  She had her eye patch on, and her glasses on, and I remembered back to a couple of years ago to when she was blowing bubbles.  I had taken pictures of her.  She had long strands of red hair that swept across her forehead and ended in ringlets around her shoulders.  Her skin was fair and without freckles, and her eyes were pools of blue surrounded by long strawberry lashes.  I sat there looking at her now, and remembering her then, and my heart ached a little.  I couldn’t see her eyelashes – there was a glare.  I couldn’t see her eyes.  I missed the ivory-faced baby girl to whom everything was magical, and to whom life had not yet thrown a curveball.

Sometimes at night, when they are all asleep, I sit by their beds, and whisper things to them.  These things I tell them would get lost in the chaos of our waking hours…when they are home from school and the homework needs to be done, and the sports are starting up, and supper needs to be cooked, these quiet words are lost.  So at night, when nothing can interrupt me, and no one can roll their eyes at me, I tell them.

I tell William to work hard.  I tell him that he is strong.  And I tell him that I believe in him, and to never give up on his dreams. To Kate I whisper of her goodness, her innocence.  I tell her that I love it when she plays her viola, that her music is beautiful.  I whisper of horses and flowers and books…these things we both love.  I tell Ella that I adore her, that she is my precious, sweet baby girl.  I tell her that I love watching her play basketball, and that her reading is very good.

And Henry.

Sometimes I start to whisper in his ear.  And then I remember that he can’t hear me.  And that same, visceral ache to one of life’s curveballs arises in me. He won’t hear that he is awesome.  He won’t hear how smart he is, or that he is a leader, or that he has a good heart.  He won’t hear that he is going to do something big someday.

I tell him anyway.

I brush the hair from his forehead, run my finger down the length of his freckled, perfect nose, and I tell him.

 

Shadow Feelings

 

A few weeks ago you played in a tournament.  It was a short-lived experience, on a team that I knew would not last.  But even so, I sent a note to the coach to let him know about you.  About how you don’t hear all that well, and that a gym, especially, is a really crumby place to hear anything what with all the bouncing balls and pounding feet and yelling.  There is nothing in there to absorb sound, so it must be wildly frustrating for you, Henry.

I told him what I tell all of your coaches…

…to look at you when they speak, and to speak up a bit.

And also that your dog chewed up one of your hearing aids so you only have one ear to work with…

…that you are smart and you will pick up on everything quickly.

And he responded politely.  No questions.  No concerns.  Just a nice response that went something like “looking forward to meeting him.”

But something in me, just the slightest little bit, felt unsettled.  That shadow of a feeling you get in your heart when there isn’t really any tangible reason for it to be there…it was there.  Sometimes it feels like paranoia.

I watched during the final game.  I watched him call to you out there.

HENRY.

HENRY.

HENRY.

You kept on running.  All of you…you all kept on running.

And then he pulled you out and he did not put you back in.

Maybe I am wrong, or maybe just then I knew what that shadow of a feeling was for.

I wonder how many people in your life, rather than putting in an effort to talk to you, have just given up.

They are missing out on you, little buddy.

5 dB

We finally had Henry’s annual audiological exam the other day.  It recorded a mild (5 dB) loss. 

I don’t know how to feel about that. 

I feel angry.

I feel sad.

I feel as though he is being wronged.  Again.

I wonder if someday he will be completely deaf. 

I also feel a little bit like I’m not certain about the results.  Because he may or may not have been slightly unfocused.  Slightly silly.

And then Henry hands me his IEP draft. 

I read it.

Popular

well-liked

delightful

above grade level

meets and exceeds

no delays recorded

I am proud of him, and I am pleased.  I am thankful. 

But I wonder how long I will read IEPs like this one, with all the good stuff…the no-delays and the meets-and-exceeds. 

Anger, and resentment, and sadness–they are still there I guess, just a little, but I rarely hear from them.  The wondering why, the wondering what if things were different, the wondering what will come…still there…just a bit.

I got mad at him that night.  It was bedtime and he was talking and complaining that I said goodnight to William first and stalling because his toes were dry and itchy and I was tired of talking and explaining and mad and he couldn’t hear me and I yelled. 

And then I went back into his room, and hugged him, and told him I was sorry.  And that I love him.  And he just threw an arm around my neck the way he does, and forgave.

He will never understand how I love him.  And he will never understand how proud I am to be his mom.

He will never understand how wonderful I think he is.

Pride.

Gratitude.

Happiness.

This is what I feel, almost always.

(Except for this morning when he was fighting with his brother.  But that is normal, right?)

How do you explain to a little boy that he is different?

When he tells you he can’t wait until he doesn’t need his hearing aids any more…  How do you tell him that he will always, always need them?

That his hearing will never improve. 

His ears will never be fixed. 

That he just won’t ever hear the way the rest of us do.

How do you look him in the eye, knowing that what you tell him will wound him…

…That he’s different.

…That he’s special. 

I cringe at those words. 

How do you make.him.understand just how extraordinary you think he is? 

And when you look into his big, sad eyes, and he says

“I will have to wear hearing aids…even when I’m a dad?”

“Even when you’re a dad.”

He thinks he will heal. 

You know he will not. 

He thinks he is broken. 

You know he is not. 

You wipe big, round tears from his face.  You hold him in your arms.  You tell him you love him, so much.

You tell him the beautiful things about him. 

And then you go to bed.

Broken-hearted.

Knowing.

Knowing that the real hard part about this is just beginning.

Searching.

Praying.

Crying.

Hoping. 

Hoping he will see, someday, what you see.

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.

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.

Hearing Aids Do Have Some Advantages…

The children (one in particular, but I’ll not mention any names) have begun to plug their ears when they don’t want to hear something.  And we’ve been explaining that it is rude and unacceptable to do so when Mommy or Daddy (or another adult, or frankly anyone) is speaking. 

Henry is a visual learner.  I’m sure that is due, in part, to his hearing loss, but whatever the case, he is very observant.  Let’s just say that the little freckle-faced, redheaded, four 1/2 year old boy is clever, very clever.  He tried with the ear plugging, but the hearing aids still pipe in the sound to his ears.  So the other day, when he was being reprimanded, he smiled, turned off his hearing aids and said 

“Ha ha!  I can’t hear you!!!” 

So we then gave him the rude, unacceptable lecture, which seems to have taken care of the problem.  As frustrating as it was at the time, in hindsight it is a little bit funny.  I just hope he doesn’t say something like this to his teacher.  I don’t think she’ll get the whole “little-bit-funny” aspect of things. 

He gets that little-bit-funny part from me, you know.  And also the very clever part.  I can’t help but love him.

4 1/2

Today, he graduates.  He is done…for now.  What does that mean?  In a nutshell, it means that his language (both comprehension and expression) is age-appropriate.  In two years’ time, he has made 4+ years progress.  He is done with the catching-up part of things.  We focus, now, on the not-falling-behind part of things. 

Tonight we went to Coldstone to celebrate.  I marveled at him, and the funny things he has said, the sweet things he has said.  And yes, he sometimes speaks too loudly.  He sometimes leaves out words like ‘the’ and ‘and’.  And often, he misunderstands or asks us to repeat ourselves.  And I worry.  But then I remember that he is 4 1/2.  He is only 4 1/2. 

Tomorrow, there will be new challenges.  For Henry, there will be new challenges his entire life.  And he will always need a little more focus, a little more determination than the next guy needs just to keep up.  But Henry is smart.  He is smart and likeable.  (And have I ever mentioned that he is stinkin’ cute?)  This is a kid that is going to go places. 

But for now, he is my little boy.  For now, we will celebrate today’s success.  

And we will let him be 4 1/2.  We will let him collect rocks, and make piles of walnuts in the back yard, and climb trees.  We will build train tracks for him to play with, while he still wants to.  We will let him run through the sprinkler and catch bugs and toads.  We will walk with him to the river, where he’ll gather snails in his pail.  And we will put his buttercups and dandelions in a pretty vase so that we can enjoy them for a while.  And for now, we will just let him enjoy being a little boy.  After all, 4 1/2 is a good age to be a little boy.

What They are Missing

When Henry was a baby, he had the most beautiful copper colored curls and there didn’t seem to be a person that walked by that didn’t comment on them.  They would gawk at him, and it didn’t hurt that he was as cute as a button, either!  He had enormous blue eyes, and he was a round little cherub.  I could hear them as we walked by, “Oh would you look at that hair.  What I’d pay to have that hair!”  and “Oh what beautiful hair.”  It never failed.  And they would start conversations with me, wondering where he got his hair color…”your husband must have red hair” or “Did you have red hair when you were younger?”  Complete strangers connected for a few minutes by a little redheaded baby boy. 

And then when Henry was two years old, he was diagnosed with a severe hearing impairment bilaterally (both ears).  I sat there in the booth with Henry, as the audiologist played the various tones that he was supposed to respond to.  My heart sank in my chest as I watched him completely ignore the majority of them; he hadn’t heard them.  I came out of the booth, and tried to listen as she gave me the diagnosis.  I don’t think I heard a lot of what she was saying because I was trying so hard not to cry in front of her.  I’ll never forget the audiologist (who also had a hearing impairment), said these exact words when she diagnosed him “It’s not the end of the world.  He’ll wear hearing aids, and he’ll be fine.  No big deal.”  No big deal?  Really?  Cause I’m not feelin’ that part of it. 

When you first think that your child is not “perfect,” it is crushing.  It is crushing in a way that you can’t explain.  I was afraid and angry, SO angry, and alone.  More than anything though, I was so very sad for Henry.  I was sad that all this time he had been trying to live in this hearing world, without hearing very much at all.  He had never heard the birds, or the rain, or the wind in the trees.  He didn’t know what Woody and Buzz sounded like though he had watched Toy Story 100 times.  He hadn’t heard the Christmas music we were playing, or the fire crackle, and he probably never heard the words of the lullabies I sang to him at night.  Had he ever heard our voices?  Did he ever hear me tell him “I love you, Henry?”  Did he know what it sounded like when popcorn popped or when the garage door opened for Daddy to come home? 

A couple of weeks after his diagnosis, we got Henry his hearing aids.  And he liked them.  Because he could hear us.  He could hear the birds, and the phone ring, and the washing machine and the microwave.  For the first time in his life, he would sit and listen to a book, because he could hear it.  And he loved it.  His speech took off and we were thrilled with how well he was doing. 

And the comments about Henry’s hair kept on coming.  But they changed.  A stranger would see him from afar, and say something about his hair, and as they came closer you could see the realization wash over them–that he wasn’t perfect.  That he had something wrong with his ears.  And rather than linger to chat about his hair, they would press on with their business.  Oh how I wanted them to ask me about him.  I wanted to share how proud I was of him and how much he is learning!  And that it is okay that he has hearing aids.  And that he IS perfect.  He is Henry. 

It has taken a long time for children to begin to notice the hearing aids.  But as Henry gets older and becomes more interested in other children socially, they ask about them.  “What are those things on his ears?”  And I explain to the child that he needs those to help him hear.  And that is just fine with them and they keep right on playing.  It is the parents that always act nervously about it.  I remember being at a party when a little boy asked his mother why Henry had “those things on his ears.”  And his mother shushed him and said not to talk about it and then moved away from us.  I wondered why she didn’t just explain that they were hearing aids, and that they help people to hear better.  It broke my heart to see my little boy standing there, watching them walk away from him.  And it made me angry.  I wanted to shout out loud that there is nothing wrong with him.  And that I would love to tell you about my boy, who I am so very proud of.  And “Why don’t you just ask me?!”

They are missing who he is, because they see a piece of blue plastic around his ear.  They are missing his freckles, and the beautiful blue-green color his eyes are turning, and the way the sun glints in his hair.  They are missing his enthusiasm, and his sweet demeanor.  They are missing his curiosity, and how he always wants to help you with what you are doing.  They don’t hear his incredible laugh, the kind that makes you laugh in response, because they are focused on what is “wrong” with him.  They don’t see that he is just like their little boy, perfect.

***

If you want to read more about Henry (who wouldn’t?!):

Copy Cat

Boogers

Hearing the Rain

Hearing Aids Do Have Some Advantages

4 1/2

Language Sample

baseball

or click on “Henry” in the sidebar categories.