Special Needs Children

Today on the blog Kelly's Korner she is linking to blogs about special needs children.  While it is weird still for me to think about, David is technically a "special needs" child.  And really folks, he has been for six of his seven years.

David was our first child, so I didn't really know what to expect with him.  He was a great baby - really quiet, alert, and a fabulous sleeper.  The quiet part, in retrospect, was a clue.  When I had Henry, David was still a baby - he had just turned 1 less than a month before Henry was born.  When David was about 15 months and Henry was about 3 months, I realized something was wrong; Henry made more noises than David.  David always understood everything we said, from a very early age.  But he never responded with more than a grunt or a smile.  As he got older he would point and grunt, but there were no words.  We heard it all:

He'll talk when he's ready.

or

He's fine - he just doesn't have anything to say.

or

Don't worry about that.  Be glad he's quiet.

Um, no.  Even his pediatrician wasn't concerned.  But I was.  I asked for a referral to the Tennessee Early Intervention Service.  They sent someone to our house who evaluated him.  Their response?  He's so smart!  His speech is slightly delayed, but not delayed enough to qualify for services.  His pediatrician was OK with that.  His mama was not.  I had a private evaluation done at Vanderbilt's Bill Wilkerson Center.  He had an hour of testing.  The result?  At 18 months old he had the receptive speech (what you understand) of a 21 month old.  He had the expressive speech of a six month old.  The same exact age Henry was when we got David's diagnosis.  And what was his diagnosis?  Apraxia of Speech.  I promise you, this is not a diagnosis any parent of a child with a speech disorder wants.  It's a long, long therapeutic process that can last very commonly until a child is in middle school.  It brings with it lots of potential for learning problems and behavior problems because of the frustrations a child who cannot speak can experience.  I was not really disappointed - I was ecstatic, because we finally knew what was wrong.  And someone had validated my concern that there even was something wrong. 

Next we had two and a half years of speech therapy.  Sometimes once a week, sometimes three times a week.  Sometimes individual therapy, sometimes group therapy.  Sometimes therapy for an hour, sometimes therapy for three hours.  He was tongue tied.  His tonsils and adenoids were interfering with his speech.  No problem - we surgically fixed it all.  And he talked!  We started with sign language and flashcards and food boards and pictures all over our house.  Then he spoke.  Actual words.  Nobody could understand him, but it sounded beautiful.  Then we was talking in full sentences!  It was magical to us.  (Little did we know years later we would wish he had a mute button!)  He was potty trained on the "little" potties at his speech clinic.  We knew the receptionists birthday, where all of the good vending machines were, and the secret places we could always find a parking lot quickly.  Then, one day, I was pregnant with Jack pushing Henry in the stroller down the hall to speech while David ran ahead to the room.  His therapist looked at me with tears in her eyes and quietly said, "He's done."  I looked at her with what must have been confusion on my face.  She repeated, "He's done.  There's nothing else I can do for him."  What?!  We were discharged.  I was shocked.  I knew he had improved dramatically, but done?  And she was right - he was done.  So our lives went on, smug over how quickly he had "mastered" this neurological condition that can be so hard to overcome.

We were so careless with that emotion.

Fast forward to Kindergarten.  He would freak out in the gym before school.  He had a terrible time adjusting.  He got in trouble in related arts for not paying attention, hiding under his desk, making "strange mouth noises" and humming.  He hated birthday parties and family functions.   He loved to swim and jump on the trampoline.  He loved to swing and run.  He had a hard time figuring out how to ride a big.  Tags bothered him in his clothes.  He was a quirky child.  He had a very limited selection of foods he would eat.  Other people's food made him gag.  He wouldn't walk in the grass with bare feet.  I could go on and on.  But he is so smart!  He did great in school.  He made friends.  And he got better about some things as he got more used to them.  Some things.

Next up?  First grade.  And moving to a new house and a new school.  Right before we moved he started doing this weird eye thing.  He said "sometimes my seeing mechanism doesn't work right and I have to do that to clear my eyes."  OK - I took him to the eye doctor and he needed glasses.  Problem solved.  Then he started to shrug his shoulders a lot.  Like, when he didn't really need to.  Then he started this weird head whipping behavior. . . we tried to ignore it but I had that feeling again.  The same feeling I had when people would tell me that he would talk when he was ready.  So I brought him to the doctor, not really expecting much.  Especially not to have the doctor tell me that David has Tourette's Syndrome.  And probably Asperger's.  Um, come again?

Enter: second and third opinions; breakdowns by his mama; pediatric neurologists; more breakdowns by his mama; a miraculous horse back riding birthday party followed by us finding an equally amazing occupational therapist who really made us realize that we would all be OK.  And that he also has Sensory Processing Disorder.  And then, an odd peace.  Yes, I have a peace about all of this.   I did not get to this place easily or overnight.  David is fine.  Does he have Tourette's?  Yes.  Does he have Asperger's?  We don't know.  We have more appointments this week to do some more testing.  Will it matter if he does have Asperger's?  Nope.  Not one tiny bit.  Does he have Sensory Processing Disorder?  You bet.  And it all makes sense to me now.  That, my friends, is why it's all OK.  David is David - no matter what sort of note he has in his medical chart somewhere, or what insurance category he falls into.  He is sweet and silly.  Smart and snuggly.  He is witty and intuitive.  He is a voracious reader, a fish-like swimmer, and a mediocre baseball player.  He has a horrendous fashion sense and zero rythmn.  He loves the Black Eyed Peas and running.  He can build a Lego structure like nobody's business.  He could tell you more about Star Wars than George Lucas himself.  He was our first baby and taught us a whole lot of things that we never expected to learn.  He has made me a better person, because I want to be better for him.  (And for his brothers!)  Does he have special needs?  Yes.  But he is special for so many other reasons.