Saturday, August 14, 2010

Loving my little man......

I have not blogged in a LONG time..... I have wanted to and then another thought crossed my mind and *poof*, I was onto another project.  Anybody who knows me, knows this is how I am from day to day.  It's what make ME, ME..... Anyways.  My son Kevin Andrew, whom we formally call "Andrew", has been going through some "tough" times for the past few months.  I noticed LONG ago my baby got frustrated easily, was not fond of LARGE gatherings (unless it was family or friends he knew well).  Andrew has always excelled in school, from the moment he was in daycare and my friend taught him his shapes and colors.  What 2 year old knows the color "Khaki" or "violet".... and other colors that come off other colors?  He knew what a Hexagon was, an octagon, and would correct you if you called a rectangle a square.  I figured, WOW, he's smart!  He excelled in pre-k, Kindergarten was no different.  In 1st grade they recommended he be tested for the gifted program.  I was excited, but received a letter back that scored him high in all areas but "emotionally".  I blew it off.  Second grade came and he was in a class which placed him w/ kids that were higher up in scores.  He did well, I thought.  The CRCT testing came and he scored lower.... where he had been in the highest range before.  Again, I blew it off.  Summer came and the frustration came.  Storm have always upset my little man, but now he can get on a computer, or my iPhone and TRACK radar and the directions and intensity of storms.  He'd avoid going places or outside.  He avoided things he once loved like swimming or playing at the lake.  Crying and melt downs became a part of my every day existence and his, if the weather was bad.  I blew it off to anxiety.... but with past instances in the back of my mind, I wondered.  When he was 4, my father came down from Buffalo, NY for a weekend visit.  Andrew was playing a game on the computer about trains that my father had brought him.  He was into it, we decided to go to dinner out and announced it.  Andrew flew into a tirade.  Crying and screaming, kicking... he had strength no child should have at his size.  My father is a tall man... over 6 feet.  It was difficult for HIM to restrain Andrew.  We cancelled dinner and cooked at home - I calmed down my baby with soothing words and a book.  He was fine, acted like nothing happened.  Little did I know, this was the first instance, of many to come over the next 4 years.  I enrolled him in Clash Soccer.  He even had a few kids from his class on the team.  The first day he was hysterical.  The second time he was happy, learning and smiling.  When they started to play little mock games, he became agitated and upset if he missed a goal and another kid got it and scored.  After that he didn't want anything to do with it.  One night after I tried to force him to play, he started to kick and scream, even using curse words.  Embarrassed, I Packed my things and left, as parents watched me and thought my child was a "brat", and out of control.  On the way home, wearing his soccer cleats, Andrew repeatedly kicked my shoulder and arm... pulled my hair and screamed.  I just wanted to get home.  I was scared and frustrated.  A day later he acted like nothing had happened.  I took him to a psychologist, worrying he was bi-polar.  A psychiatrist said he was ok, nothing wrong and not bipolar.  I mentioned autism and got a negative to that too.  Things stayed ok for a while.  Recently, I noticed things getting worse.  Andrew hated his life, said I would be better off if he was gone.  Why did he have these things in his head?  Why doesn't anybody like me?  I always knew he had issues with making friends but I was shy when I was young.  I still felt like I needed to have him seen again.  I took him to another doctor this time, a doctor recommended to me by a close friend, whom I trusted.  I filled out a form that was miles long with questions about Andrew.  Dr. Atalla met with Andrew for 30 minutes.  When it was my turn to meet with him (alone, which I Liked, so we weren't talking about him in front of him), he smiled and started to laugh stating what a "Wonderful" child Andrew is, "So smart and inquisitive".  I felt stupid.... until he said my baby has a form of Autism, Aspergers"... in the Autism spectrum.  "High functioning" autism.  It's called "NLD", A Non-Verbal Learning disorder.  I was confused.  Non verbal?  Andrew has the speech of a 40 year old.  Words and sentences that an adult would state.  I was upset.... Nobody wants to have their baby to have something wrong with them.  I was so confused.  I saw him speaking to me but I was not hearing him.  I couldn't understand.  I wanted Andrew to be happy and healthy.  I wanted him to enjoy being a child.  I want him to grow up have his own family some day.  One thing I did do, was ask Dr. Atalla to write down what he was telling me.

At home, I was able to look up what "NLD" is.  Reading the description, was like reading a paragraph of my son's life thus far.

**Nonverbal Learning Disorder (NLD), also called Nonverbal Learning Disability, is a developmental disability which all too often goes undiagnosed. Individuals with this potentially debilitating disorder generally suffer in silence. 
The term Nonverbal Learning Disorder/Disability is actually quite misleading.  highly verbal, with their areas of deficit being in the nonverbal domains.  
They are often bright, sometimes incredibly so. As young children they may actually be targeted as gifted, due to their mature vocabulary, rote memory skills, and apparent reading ability.  

However, parents likely realize early on that something is amiss. As preschoolers, these youngsters probably have difficulty interacting with other children, with acquiring self-help skills, are not physically adept, are not adaptable, and present with a host of other troublesome problems that are of concern, but not alarming.  
In all likelihood, the children bump along (figuratively and literally) through their early elementary years, handling the academic demands fairly well, except when their fine motor difficulties get in the way, or they fail to attend to a math symbol calling for addition or subtraction, or some other subtle symptom of their disorder derails them.   

As these children enter the upper elementary grades or begin middle school, they are left to handle more tasks on their own. Things rapidly begin to deteriorate. They get lost, forget to do homework, seem unprepared for class, have difficulty following directions, struggle with math, can't read their social studies textbook, can't write an essay, continually misunderstand both their teachers and their peers, and are often anxious in public and angry at home. They are accused of being lazy, rude, uncooperative, and worse. Nothing could be farther from the truth! They are hardworking, persistent, goal-oriented, and incredibly honest. They have NLD.**

I recently purchased a book online about NLD.  I have 2 so far and they both state kids go undiagnosed until the age of 8 or 9, because of the way this disorder progresses.  I currently have Andrew scheduled for more appointments.  I contacted his school so he could be placed in a class that can understand and help him better.  I have a tough decision regarding medicine.  Some days I am totally against it, but after this last week, I really have to decide what is best for my little man.  The first week of school was rough. I had a lot of anxiety and meltdowns to deal with in the morning and of course before bed time.  It's hard seeing your baby go through so much.  It kills me to see him ask me to "fix" him.  It's a work in progress.  I have a friend helping him through "Equine Therapy", often called "HIPPO Therapy".  The first time we went, I figured it was a no-go.  But I was shocked to see my little man hop right on the horse, no saddle either, BAREBACK (after my friend's daughter Sabrina did it.... he likes her a lot, she's 18 and the one that's helping us).  I almost cried.  And of course I have pictures.  Even got a small video (man I love my iPhone 4 - Thank you Apple!).  I still have much of my things from when I had my horses.  I knew I saved it for a good reason.  I Made Andrew a basket with all the brushes and combs to help groom "Sid".  I have halters and leads for him and 2 bridles.  I don't know who's more excited!  

I don't blog in months and when I do.... it's a novel.  This is info about my baby.  There's nothing "wrong" with him.  He's not damaged.  He is not "violent".  His little brain is simply wired differently.  Andrew is very loving and affectionate.  He's very sensitive.  Andrew loves hugs and kisses (especially giving them!).  Andrew loves to learn... He can tell you anything about the Titanic.  If you are planning a vacation, he'll tell you the weather for the next week (and be eerily right on 9 times out of 10).  Andrew loves technology - he can play a video game and beat it faster than some older kids.  He has a scalp sensitivity.... and a very sensitive sense of smell (something I noticed but never thought much of).  But all in all he's a typical 8 year old.  People hear Autism and Aspergers and think that the child is hopeless or violent.  Andrew has a chance at a happy and healthy life.  I am doing everything I can to make it that way.  He's going to grow up and be successful.  In fact...... I'm pretty certain he's going to replace Glenn Burns on Channel 2 News.  = )