Friday, June 10, 2011

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


Kelly said...

Beautifully written Kim!

Karen said...


Thank you for your post. I suspect my 28 month old daughter has a mild form of apraxia. RIGHT NOW the speech therapists just believes she is delayed due to maturity?? Anyway, she will start speech therapy soon which they do think she will benefit from. Your descriptions of your son were in many ways so much like my daughter.

Anyway, I just cried reading your post because it is obvious you guys have gone through SO MUCH and are getting him every bit of help that you can which was just beautiful to me (Some of those tears may have also been me thinking about what we are about to go through - ha). It was so apparent how much you love him.

Best Wishes and thanks again for sharing!

Karen Black
Little Rock, AR

Rebecca said...

David is a wonderful child because he has exceptional parents. We are so proud of you and love you all more than you know.

Stephanie said...

Beautiful pictures and words! I can't tell you how much our boys are alike. XO

Lynn said...

This post warmed my heart with joy. I work with a predominately impoverished population whose parent do not know how to or wish to parent a student with "special needs". Bless you and your family!

Katy said...

My niece was born last fall with Cystic Fibrosis, and it's been a shock to enter the world of "children struggling with diseases" -- never thought seriously about it until it happened to us.
It is terrifying and heart-breaking, but it's going to be ok. Even if it's not. (Maybe that doesn't make any sense.)

SoccerMomKnits said...

Kim, I love this post. My nephew has Down Syndrome and he is his own unique little person with talents and dreams too. Like my sister, you see that your son is more than a collection of diagnoses. You see he is a special, sweet boy who will grow up to do amazing things.

Linette said...

I know exactly how you feel and you couldn't have expressed it any better. My first born, Hannah, she has Aspergers, Sensory Processing Disorder, OCD, ADHD, and Anxiety. We also new at very early age something was not right as her younger sister(they are 9 1/2 months apart because my second child came early) was doing stuff that Hannah wasn't doing yet. We go to appointments for her all the time but it's all good. She has her quirks just like David does. She don't like her food to touch at all unless it is meant to like hamburgers with buns etc. Certain food items have to be made a certain way or else she won't eat them. She doesn't do well with social gatherings. I could go on and on about her little quirks but like you said that is Hannah and what Hannah is all about. It is a challenge on a daily basis. We have good days and then not so good days but we all have learned the signs and triggers so that we all can help everything go smoothly in the house. Sometimes it feels like we are the only ones out there and no one understands what you go through and if they only walked in your shoes for one day they would know how hard it can be sometimes. Thank you for sharing your boys with all of us and sharing how different always doesn't mean "special".
Linette Damon Shepardson

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

I love the way you described David and his needs. He truly is special! And you showed that even when a child has those types of needs and diagnosises, they are still amazingly loveable!
I suspect that empathy will always be a struggle for him. Children on the autism spectrum have a hard time picking up social cues that would tell them what another person is feeling.

Anna said...

Wow, it's so awesome to hear about kids with these challenges getting the help and understanding they need to be successful in life and reach their full potential.

I have Aspergers, SID, OCD, Auditory Processing Disorder, and anxiety. I'm 30. When I was a kid no one in my family, school, or small town had ever heard of high functioning Autism. And most had never even heard of Autism at all.

Growing up was a nightmare. I could barely speak to anyone outside of my immediate family. They just thought I was shy or stubborn and tried to force me to do things I couldn't do. But even without any help I was able to be successful. I've been in the military, an EMT for a fire dept., and a police officer. Things no one but me thought I could do.

I am so thankful that the knowledge about these special challenges has increased so much since I was a kid. So these awesome wonderful special kids can have a happy childhood.