Sunday, February 20, 2011

Sweet David

My sweet David has had some things to overcome in his short little life.  If you have followed this blog since the begining (you have no life) or know us in real life, you know David had a very serious speech disorder called apraxia of speech.  Apraxia is a neurological disorder that presents similar to a stroke patient - David knew what he wanted to say but his brain couldn't tell his mouth.  I knew from a very, very early age that something was wrong.  He never babbled, he never tried to talk.  He always clearly understood what we were trying to tell him, show him, et cetera, but he never vocalized anything beyond a grunt. 

We had him evaluated by the state's early intervention program.  They tested his hearing.  It was fine.  They tested his receptive communication, or what he was able to understand.  It was fine.  They tested his expressive communication.  It was not fine.  However, by the state's standards it was fine enough.  Really?  He was officially, purusant to the State of Tennessee, delayed.  But not delayed enough.  That seemed to be OK with his pediatrician.  That wasn't OK with me. 

We switched pediatricians.  We had an evaluation done at the Vanderbilt Bill Wilkerson Center.  They tested his hearing.  Still fine.  They tested his receptive language.  He was 18 months old when he was tested at Vanderbilt.  His receptive language result was that of a 24 month old child.  He was six months ahead.  They tested his expressive language.  His result?  He had the expressive language of a six month old baby.  I remember so clearly getting those results and looking at David, then looking at Henry in the stroller.  Henry was six months old.  My toddler and my newborn had the same ability to express themselves. 

I remember initially feeling so helpless.  How do you teach someone how to talk?  How does a child who is a full year behind recover from that?  Then I started to google.  Google is not the friend of a parent with a child newly diagnosed with a serious neurological disorder.  I learned about all of the challenges that children with apraxia face - learning difficulties, behavioral difficulties, social difficulties, and obviously the difficulties in learning how to talk.  I learned that services for apraxia are often not covered by insurance.  I learned that children with apraxia often need speech services and/or other therapies until they are 11 or 12 years old.  That meant we were looking at 10 years of speech.  Ten years.  Think of everything you've done in ten years.  That meant that dealing with apraxia would become a way of life for us. 

I didn't want to face apraxia for ten years.  I was determined to do whatever I could to help David.  We went to speech therapy once a week.  At first.  Then it was twice a week.  Then it was twice a week for individual therapy and once a week for group therapy.  I would drive from our house to Nashville three times a week, with two babies, and drive home.  Eat, sleep, repeat.  We learned sign language.  We made word boards.  We did flash cards and puzzles and role playing and repetitive word sounds and played with educational toys.  We enunciated our words like it was our jobs.  We had his tongue clipped - because who knew the child was tongue tied?  Not me.  Shouldn't I have known that?  I'm his mother for crying out loud.  He kept going to Vanderbilt. 

We ate snacks each week from the vending machine as a special treat.  I pushed that big ass double stroller all over the halls of that hospital.  We loved our therapist Ms. Bev.  I also would have been happy to never see her again.  The receptionist knew us by our first name.  We stalked people in the parking garage that always seems to be under construction, because there was never any spot to park.  We figured out which elevator was the fastest, and which trash cans were never emptied.  David learned how to use the potty there, in the small potties.  I potty trained my child in a freaking speech clinic.  I spent more time playing with Henry behind an observation mirror while we watched David in therapy than I did at our house, it seemed. 

We had his tonsils and adenoids removed.  We kept going to therapy.  I got so many statements from the insurance company that we kept them in a three-ring binder.  We read books out loud, and magazines, and cereal boxes, and the newspaper.  We pointed to everything we saw, saying the name of this or that.  Look David!  A chair!  Look David!  Toilet paper!  Can you say "paper"?!" v I got really excited about inanimate objects. 

And it worked.  It worked!  He was discharged from speech years before we ever thought it would happen.  About 6 years before we thought it would happen.  All of a sudden it worked.  And once it worked he started doing this weird eye blinking thing.  But sometimes that happens, they said.  Sometimes when a child starts talking all of a sudden his little body can't keep up with the changes and something else gets wacky for a little while. We brought him to the best pediatric opthamologist in Nashville.  His eyes were fine.  The blinking?  Totally freaking irritating.  But it went away.  And he could talk!  And he was smart!  No learning issues. 

So we went on our way.  We lived our lives.  He went to preschool and made friends.  No social issues.  He didn't get in trouble.  No behavior issues.  He went to Kindergarten.  He loves school.  He learned how to read.  And to write.  And to add and subtract.  And that he loves space and dinosaurs and doesn't really care too much for practicing his handwriting.  And he made more friends, and rode the bus.

And then started doing another weird eye thing.  When we asked him about it he said that "sometimes my seeing mechanism doesn't work too well so I have to do it."  We had his eyes tested, and he needed glasses.  Problem solved. 

And then he started doing this weird shoulder shrugging thing.  But don't all kids do weird things?  Let's just ignore it and maybe it will go away.  Maybe he's just being silly.  And when he noticed us watching him sometimes he told us it was a "deskercise" he learned at school.  I would remind him he's not at school.  But he still did it.  And I asked his teacher one day if he does it at school.  Oh, he does?  So I made a doctor's appointment.  Maybe we should have it looked at, just to make me feel better.  I'm sure it's nothing.

That appointment was Friday.  And I don't feel better.  In fact, I feel worse.  Much, much worse.  And I've been back on google, which we all know doesn't usually go well.  And this time it's gone very, very bad.  And this time we didn't get just one diagnosis, we got two.  Well, at least that's what the doctor thinks it is.  But let's go to someone else for another opinion.  And I feel so bad feeling bad about it. . . none of this is life threatening.  Life altering?  You bet.   But not life threatening.  And I know we'll get through it.  But damn.  How much does this little boy need to beat?  How much does he need to learn to adapt to?  Three years should have been enough.  And I know he'll be fine.  And we'll figure it out and we'll deal with it.  But for right now, in this moment, I'm going to be sad about it.


mediocre mama said...

Hang in there Kim. David is your son. He will make it through this and anything else life throws his way and be just fine. My oldest has been through a ton already too. (He has retinal tumors, NF2 and learning differnces. He went through all the surgery stuff and then it did nothing to improve his vision.) I try to take things day by day and not to worry until the doctors tell us to. I know this is easier said than done. I say, have your sad day or two, but then get right back in there and do what ever needs to be done because we're mamas and that's what we do. I completely agree with the idea of avoiding google. Sincerely, missy

Katie @ On the Banks of Squaw Creek said...

It's so hard to see our kiddos hurting. He has had a miraculous recovery with his speech, in large part due to you - so many parents ignore problems or won't go the extra mile like you did. He is lucky to have you!

Stephanie said...

Very beautiful my dear! Made me cry and you know why! I feel like you took the words right out of my mouth. It's a new normal, but you have every right to be sad and will continue to have good and bad days. XO Love you!

Katy said...

You are doing an amazing job, but that's what mamas do. We do whatever is necessary, day in and day out. (My newborn niece has cystic fibrosis, and my middle son has health issues too)
The one thing that always made me sad was that my "normal" kids took a backseat to the sick one on a regular basis, and as a result I think I lost a whole year of my daughter's life. Can't remember a thing.
But you just keep trucking. No matter what. I've learned not to google too, and not to think too far ahead. (hugs) Sad days are ok.