Testing 1, 2, 3... Testing.

It's that time again for more testing.  It seems like it never ends.  Three hours of pavement to hotel destination so we can make our first appointment at 6 pm.  Just another intake.  To follow tomorrow morning for testing.  

Testing for IEP's, blood, psychological all for what?  To be able to ask for help for a child with needs but first your kid must pass or actually fail the testing just to prove they really need the help.  

Over the years, this has been very challenging for Seth and his teachers because he is very inconsistent with school work and any testing.  Being on the Spectrum along with his other mixes makes it was difficult to know what he really needs help with and what he can handle independently.  Along with the best ways and goals to help him strive.  

Seth has come a very long way from where he first started and I wholeheartedly believe this is due to realizing Seth's difficulties from 13 months onward and early intervention. It is beyond frustrating to hear some people question if a child is on the Spectrum.  This happened to me when Seth was four.  I signed him up for a sport and some of my friends children were on his team.  One of them only heard of the stories that we were going through with Seth and made a comment how he seems "so normal".  UNTIL she saw him have a HORRIBLE sensory meltdown that involed banging his head on the ground, yelling words that made no sense, pulling his hair, covering his ears and ultimately running. She then quickly apologized.  More on that topic another time. 

My mind is tired. I dislike reliving Seth's younger years because that was him back then... Let's focus on the Seth who he is now.  We are all a work in progress and all have issues some just are more intune and better equipped to handle most situations.  I am tired.


Let the testing begin.  

Da mix is back... slightly improved.

Wow. It has been quite some time since I have blogged on my page. Many reasons for this absence, but I will spare you all with the mundane daily excuses that we all live and have. Tired. Overwhelmed. Disorganized. Tired. There it is in a nutshell. Moving forward. 

Since the start of First grade Seth has come a long way. His school and I are still in the works for his 504 and IEP. Hoping to have the final details next week. With that said, the last two months have been a pretty smooth ride in our household for him (finding the closest piece of wood to knock). I can only guess that this is due to many factors. His medication and dosage are right on, he is in routine with school-class-teacher, Rescare, his doctor, football season, wrestling season, maturing, slowly learning to control his emotions/tantrums, finally allowing us to help him and he is slowly recognizing and understanding how to help himself or at least he is seeing the difference when he is "doing better". 

And BEST OF ALL.. He now LOVES and ACCEPTS when I hug and kiss him!!!!! Nothing beats that... NOTHING!

Along with his football and wrestling, skateboarding and surfing are still if not more then ever a huge "release" for him.  He is like a work horse or working dog.  I can not even begin to imagine what is happening in the "inside" of his brain when he is literally bouncing off the walls and speaking so fast with excess saliva.  Always on the go and needs to be in constant motion.  Though his body and muscles are quite rigid and not extremely flexible along with being semi clumsy and not always aware of his surroundings... he goes full force into whatever has his focus at that moment.  Still to this day trying to teach him the correct stance on a skateboard, he wont have it.  Will not listen.  He knows all.  Of coarse he does, he is 6 after all.  Ha!  His stubbornness and determination is a double edge sword.  One edge makes a lot of chaos for him, loved ones and his surroundings which have led to countless meltdowns and hurt.  On the other edge, he is not a quitter.  Does not give up. This can pertain to school work, sports, cleaning, ect.   He tends to give it his all until he gets it right or at least what he thinks is "right".  

Whatever is "right" in Seth's world at the moment, is well... right.  At least as he sees it.  No use arguing, convincing, debating, proving him otherwise... his brain will not accept it.  Period.  (If I have learned anything in my 6 years with my son, it is the above.)

Noise and peas please

Noisy eater.

Is it in the genes? My father was a "noisy" eater.  When his palate was tainted with delicious food, he moaned about it while eating. Arousing his taste buds to the highest level.  His sounds told a story about how delicious his food was and one just knew how much he was enjoying every single ingredient that his taste buds had just encountered.  As a young kid, I was totally embarrassed of my father's noises.  Now when I think back to it, it was like my father was having a romantic interlude with his food. That's when he should have pulled out the table sign "Privacy Please" and "Do Not Disturb".

My father would have been a great sidekick companion for Anthony Bourdain. Traveling the world in search of great eats. The two of them sipping their cocktails and spirits while romantically tongue fondling their food. Licking every last morsel from their fingertips to prolong the inevitable....  The last moan. Ha!   

30 years later it came to haunt me again.  Twelve months after the arrival of my son, Seth, the noisy eater came alive in a kitchen in Kill Devil Hills.  Stage 1 foods.. peas, bananas and pears.  Mmmmm,  moaning and chanting have been apart of my son's eating ritual.  Add that to his bag of alphabet soup.

As well, when his palate dislikes something his tongue comes out with food still attached. Then is followed by gagging sounds, coughing, hands on neck, excess saliva and then the expelling of food into the trash can with the occasional vomiting. He puts on quite a production with an over-the-top performance. *Seth now dislikes peas. 

His noises have continued but have been less pronounced with his daily food intake except when a new totally awesome food/ingredient hits his palate. Watch out and grab your ear plugs.   

Pop-pop Mark passing the "noisy eater" gene down to Seth.
This was taken back in the day in Manteo, NC

  

Goldfish NOW... please

Goldfish you say.  

When did Goldfish become a hot commodity in our household?  Let me rephrase that.  When did Goldfish become a hot commodity in households across America?  

I can speak for my household.  Since Seth was a tot he loved to eat and still does. Food is a huge soothing sensory for him.  Original flavored Goldfish (and most food for that matter) use to be a good barganing tool to get Seth to behave better or to accomplish something. Sadly, this barging tool hasn't worked much lately. Nonetheless, the kid loves to eat!

Hunger drives him.  It is deeply rooted and entangled in every aspect of his life. While playing, he will just stop and say "I'm hungry".  The moment he awakes, "I'm hungry".  The very second he steps off the school bus, departs the toilet, watching the tele, homework, swimming, just AFTER he ate and says "I'm full" he follows up with "I'm hungry. Can I have desert?"  (Sidenote: In our home, deserts are for special occasions.. not an every evening dinner wrap up).  

When food is not granted to Seth, the meltdown begins - in stages.  Whining, frustration, yelling, anger, screaming, meltdown and destruction.  Self hurting. You might be thinking that I am over exaggerating, sadly, I am not.  I wish I was.  The boy truly thinks that he will die if he does not eat NOW.  It consumes him.  

As I said, food is a huge soothing sensory for him.  When I don't grant him the food he wants, it is because I am trying to help him understand that he needs to have control over his emotions and the difference between needing and wanting to eat.  

So, if you happen to see us out one day dining at a local eatery and he is starting to go awry, there are a few factors to consider....  

1)  He wants to eat whatever he "thinks" he wants. (Meaning: What he thinks he wants to eat, is not always what he "really" wants)  
Example: He says he wants chicken.  Sounds simple enough right? WRONG.  Is it chix nuggets, boneless chicken, chix on bone, fried, baked, grilled, pan, bar-b-que marinade, lemon and spices coated, no coating, you get the idea.

2) Then when he says what he "really" wants.. its not always the case once it is served to him because it... A) Might look different from the last time. B) Might taste different from last time. C) Might smell different from last time. *Smells and odors can also drive Seth into sensory overload mode.  That is for another blog post.

 3) The mean mommy comes out and makes him "try" a food he disliked a few weeks ago.


 Whew. That was exhausting.

Tidbit:  Quick glimpse into Seth's mind.
A sandwich isn't a sandwich.  You ask Seth if he wants a sandwich, his reply is usually...  bread, turkey, bread (bread, turkey, mustard, bread).    

Oh Dare oh Dare

Dare County is located in northeastern North Carolina along the Atlantic seaboard. Dare County stretches along almost 110 miles of shoreline known as the Outer Banks. Population: 34,307.  Lat and Long : 35.6549619, -75.6208088.

So now you have a brief idea of the county in which I live in.  Beautiful and serene.  Just like something one could dream of retiring too no matter how young or old. Living the "beach life" to surf and fish.  Come, come to me says Dare County. Trade in your coats and ties for board shorts and flips.  Live the easy, laid back life. Sounds lovely, right?  There is a catch for some of us here on the Outer Banks aka OBX.  While this is true for most, it is not for me and my son. 

I love the surfing, beaches, fishing, outdoors, laid back lifestyle but the OBX is not the most "special needs" friendly place to be. This is not a secret.  Finding certain therapies for Seth has been a challenge to say the least.  Also, finding other out reach programs and support programs has been harder then I thought. 

Every 4-5 weeks Seth and I take a 5 hour trek (drive time to and from) to his psychiatrist in Greenville, NC. We will also be venturing to Virginia Beach, Virginia (3 hour drive time to and from) for a pediatric behavioral therapist probably once a week.  That is a lot of drive time for my little guy and me too, as well as loss of school time.  That in itself is extremely physically and mentally exhausting and can cause Seth numerous meltdowns, making me want to insert my ear plugs. Of coarse it is worth it, but if he has a meltdown on the drive to the appointment - the apt is almost always useless.  I never know what will trigger Seth to have a major meltdown so I can never plan what to expect.  

Please do not take this post as a dislike for the OBX, that is so far from the truth!  I love living here and the lifestyle. We also have some freaking awesome friends and family that bless us everyday! As well, Seth has an amazing occupational therapist, a wonderful pediatrician and had great speech therapists.  And we are gifted with a stellar program called,  "Surfing for Autism".  You should check them out. http://www.surfingforautism.org/ . 

As for Seth, depending on his day/time/mood/hyper state/hunger/phase of the moon/tide charts... he too loves to surf, bogie board, fish, swim and the beach life.  Heck, that's all my kid knows.  

Before 6 years ago, I did live the laid back beach life and could not have imagined otherwise. Hopefully most of you have never had a special need and never will but if you did or do then I am guessing you have some understanding for my post.  

Yes, there are days that I wish we lived closer to an area that catered to all of Seth's need.  Just to spare him the "off routine" of the day. Then, just as I wish for that, I find myself longing for the sunrise on the beach, smell of the salt air, sand in my hair, saltwater skin, feel of the surf, sunset on the sound and most of all, my loving home I so adoringly call, OBX. 

Seth surfing at the Surfing for Autism event. Nags Head, NC 

Kai, Keana and Seth. Sunset on the sound in Kitty Hawk. 

Step Brothers and buds: Kai and Seth

Sunday sunrise

  .     

Add a pinch of Autism to the mix.

I created this blog about one year ago.  As you can tell, a year later, this is my first blog entry.  Here is the story to my blog; Add a pinch of Autism to the mix.

Happy birthday to my sweet son Seth.  June 16, 2006 we welcomed our son with open arms and lots of love.   When he entered into our space we were overjoyed to hear his first cry.  If we had only known that there would be many, upon many cries, whining, tantrums and rages that would come along with God's precious gift perhaps a pair of ear plugs would have been a practical "welcome to the world" gift. : )  All kidding aside, I was overjoyed with happiness holding my son for the first time and scared to death about motherhood.

Somewhere between 6 and 13 months old I "just knew" that something was "off" or "different" about Seth.  I made my concerns known to his pediatrician who at the time just dismissed each and every one of them.  Hey, what did I know? I was a newbie mom at the ripe age of 30.  

After several attempts of being ignored by the ped, I took matters into my own hands. For reasons unbeknownst to me,  I did not understand why the pediatrician thought that it was normal for a 12 - 16 month old to not to take notice to a baby/kid friendly television show, hardly babbling,  scratching himself, hitting himself, banging his head into the wall, throwing/kicking objects when he would get frustrated.   By the age of 2 not interested in block play, coloring, toys, books and other kids.  Come to find out, it wasn't the norm.  

Here we go.  Please buckle your seat belt, keep all extremities inside the compartment and don't forget your ear plugs!

First stop, pediatric psychiatrist.  Came home with a bag of alphabet soup.  PDD-NOS, ADHD, ODD and mood disorder.  Second stop, pediatric psychiatrist, second opinion. Departed with the same bag of alphabet soup.  There it was, all these letters that was suppose to mean something to me and I must admit, I had not a clue of what Autism and Autism Spectrum was all about.  Honestly, I wasn't really on a search to find out "what was wrong with him" but rather, I wanted to learn how to help him and learn how to help him help himself.  All these diagnoses at the tender age of 3.  My heart sunk but mentally I was alive and hopeful because now we had the "what was wrong" with him figured out.  Or so I thought.  This was just the beginning of the journey. 

Since then our bag of alphabet soup has gotten bigger with speech therapy, occupational therapy, counseling and behavioral therapy.  Seth has come a long way with his understanding of other peoples emotions and empathy, humor, verbalizing his wants and needs, ok with being touched and held at times, finding his imagination and fine tuning motor skills.  We are still working on his LOUDNESS.  Still not sure he understands the term whisper and when he tries, well, it is LOUD.  Everyday brings on new challenges and many frustrations but in all our fog, there is always a glimpse of the rainbow.  Sometimes I need to look really hard and even when I cant see it, I must believe it is there.       

Here we are today, 3 years later.  Happily remarried I am to a wonderful Godly man, husband, father and step father.  Shane treats Seth as his own.  We have an amazing daughter, Keana who is two and she is Seth's half sister and I have a wonderful stepson, Kai who is almost 8 years of age, he is Seth's stepbrother.  Fabulous family of five we are with a pinch of Autism in the mix.  

Seth almost 2 years of age

Seth 3 years of age

Our "Rocky" Seth.  5 years old

Keana 2 (Seth's half sister) and Seth 6

My tripod. Kai, Keana and Seth

Amazing hubby, father and step dad; Shane with Seth who was 3 at the time.

Me and my children. Keana, 2 and Seth, 6