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.)

Burning soles.. To be free

We have a runner in the house.  Well, we actually have two.  (But this blog is about Seth not myself; sorta)

Seth running. He was actually running with me.  Not his "Forrest run"

Me in my first 5k

 Since Seth was about 3 he liked to escape by going into another room, hiding in a corner and even retreating to the front porch.. Always in tow was his trusty blue blankie with the special worn corner.

Now Seth has become a runner.  Not the kind of runner who laces his kicks up for the pure intention of running a good 'ol run or to obtain a personal race record. Nor does he run with a water supply, Garmin watch, gel pack or reflective clothing.  He will take off in flips, bare, socks, hungry, dirty along with a discontented state of mind.

Run Seth Run

Anger, frustration, anxiety, sensory overload, fear, overwhelmed... are some the reasons we have a runner in our mix..

In Seth's words he runs "to be free" - his hands on each side of his head as he is telling me this. To be free. Perhaps to escape whatever is going on in his head.  To be boundary free from walls, noise, dog, siblings, parents, smells, demands and exceptions.  Guessing there is a lot more to this then my "I am not really a doctor but I like to pretend" reasons.

Nonetheless, the kid is a real runner.  Spring, Summer, Autumn and Winter.  Sunny, overcast, rainy, hazy,  snowing.  No stopping this kid.  He is a real work horse.  Hard headed, strong willed, free spirit, 100% unique.. whatever label you choose for the package, in the end, its pretty much all the same.

Our "work horse" aka Rocky in training.  Actually, we were doing a beach clean up one Sunday morning.

At this point where we are with Seth, we allow him "to be free".  We allow him his "Forrest run". This by NO means, means that we don't love him and care for his safety.  This IS for his mental and physical safety.  For there have been times where we have not allowed it and he almost went into seizure mode. For all I know, he may have had one or two.  Seriously.  As well, when we chase him he goes into panic / flight mode and takes off even further down the road.  Not paying attention to what is ahead of him, to the side, behind or footing.  Which has lead him to hiding under a parked car and on another occasion almost getting hit by a car.  With that said, that is my reason for not chasing my son.  If we make him stay in the confines of the home, he feels trapped and he only gets worse. ie: hurting himself and/or his belongings.  Until we can get a handle on his running when he feels the need... Run Seth Run.  Full speed ahead... To Be Free, my son.

*sidenote: We are working with Rescare.  Praying that his insurance will approve in home intensive behavior therapy.  Hence,  learning to handle his frustration, anxiety, over stimuli and how to handle it by NOT running.  ABA therapy will be another option... in near future, but funds are already stretched thin.

Simplicity took the rear exit

Awww... I remember the days when the only choices I had to make was how long to workout for, where I wanted to eat lunch and what to make for dinner.  As well, excitedly exploring the next options for the upcoming winter trip. Or better yet, just taking a beach chair, towel and SMALL cooler for an uninterrupted all day beach event!

When did simplicity get so darn hard to come by?  Can I just buy one bottle of it?  I like simple. Simple use to like me.  Not sure where or when our relationship took a turn. But I sure miss it.  Acutally, I long for it.  

If I think back, the day simplicity went out the door was when the "bag" of alphabet soup showed up with a never ending expiration date.

Day in and day out my life involves speed bumps, pot holes, detours, and even u turns.  Don't get me wrong,  there are also great seconds, moments and sometimes hours.  I hold on to these great, happy times and can say I truly cherish them and hold them deep in memory.  There is a reason God blessed me with Seth and his bag of mix, but honestly, I sometimes wonder if I am capable and worthy of the job.  This makes me sad.  But no self pity here, I just remind myself how blessed I am for all that we are blessed with and how much worse things could have been.  There is a special reason and purpose God made him, him.  I pray that he will find his purpose and will greatly flourish in it.

Here are just a few photos from many of our good moments in time....

Acting like Momo (his step-grandfather)

The super hero family.

Catching a morning sunrise 

First year wrestling at age 5. He LOVES to wrestle.

Boxing his step dad, Shane for fun and exercise via the Outer Banks Bootcamps Family Fitness!

A morning of family fun exercise with Outer Banks Bootcamps Family Fitness!

With that said... I long for simplicity but until we meet again, I will not be holding my breathe for this reunion. It may be awhile and I have learned to be ok with this. Until then... I tread lightly.

Biscuit Burnout

Google directions to Biscuit Burnout Blvd.....

Turn right at second stop light, take next left in 1/2 mile, first stop light make U-Turn, at next light make U-Turn, first light make U-Turn, U-Turn again and again and again... you have arrived at Biscuit Burnout Blvd.  Enjoy your dining experience.


The road to Biscuit Burnout went down like this.

Seth had an appointment in Virginia. He slept most of the way to the appointment.  Lunch time had arrived and so off we went INTO a restaurant for some grub. (I rarely take Seth to a restaurant for many reasons.. just read my other blogs).  We had about 30 min to spare before the apt so we went to eat.  The moment we sat, we ordered.  Chix strips and fries for the boy, Salad for me and mex for the big guy.  All the while, the newly nice waitress informed us that she would be bringing out the biscuits while we waited for our lunch.  (Hmm... biscuits before lunch, umm, ok).  As soon as the spoken word "biscuit" left the waitresses mouth, Seth was in all his glory.  The boy LOVES biscuits! He LOVES the school's breakfast biscuits! Biscuits to him is like gold to a pirate or better yet, a Red Ryder BB gun to Ralphie. ( Remember the classic movie, A Christmas Story).

Our lunch soon arrived but no biscuits.  According to the gal, they were still in the oven.  I thought Seth was going to have a huge meltdown, but thankfully, his food kept him semi-occupied.  I must make a confession, I was "kinda" upset with the waitress for "teasing" my son with the word biscuits.  I mean, how dare her tell us that she was bringing out biscuits shortly upon our arrival to only have them delivered to us in a to-go box on our way out 30 minutes later.  ( I have to remind myself that people do not know my son nor the special and unique way he thinks.  Sensitive, Autistic, Moody self  he is.)  I mean , the kid could have had a huge meltdown right in front of her because the biscuits were taking to long. Being that they were taking to long makes her a liar in his eyes because she said she would be right back with them and she did not return with them until much later. Seth takes most things literally.  

Ok back to the story.  Out the door we were going and we were handed the to-go boxed biscuits because Seth had let his needs known that he was not leaving without those biscuits.  In the car we go and off we went. 2 minutes from restaurant to doctor's office.  In 2 minutes a lot can happen in Seth's world.

Here is the toll road leading to Biscuit burnout.

Seth opens the box.  In a seconds time he notices they are NOT the biscuits he THOUGHT they were going to be.  He called me a liar and started whining and complaining that they were not biscuits. Then he proceeded to take a nibble and then we hear "YUCK!" and then spitting noises.  He had spit on his book bag and himself.  Sweet.

Buckle your seat belt and secure your helmet please.  Here we go to Biscuit Burnout!   

Kicking, screaming, noise making were just some of what we endured on the 2 minute drive to the office. As we pulled into the parking lot he declared, "take me back home".  I quickly departed the car to head into the building.  As I am about to enter the building, I hear yelling and screaming.  I look back and see Seth running full speed past me in the parking lot. Shane then takes off running after him.  Loooong story short;  Shane had chased  him and cornered him, so Seth could not run. He continues to kick and scream in full force.  Finally about 15 min later, Seth explained to me that they were the wrong biscuits.  They didn't smell or look like biscuits. They didn't  have the "bun" on top, like the biscuits at school.

I cannot even begin to try to understand how his mind works. Even when I think I have a clue, something else happens.  I mean, a HUGE MAJOR MELTDOWN over a freakin' biscuit.  Talk about a constant walk on eggshells. UGH!

From biscuit burnout to goldfish fiasco to whatever tomorrow will bring... Seth will always me my SS (Superhero Seth) with huge drop zones and heightened highs with a special mix of Autism, ADHD and his bag of alphabet soup that only a mother could truly love and adore. I love you Seth.

Sadly, the events spoken here are very true, upsetting and much more intense and involved.  I did not feel the need to give the exact play by play...because well, this is not the first, nor the last. .. and I did not feel that the every word and action would make this post any more or less. 
 *Sidenote:  I had a woman approach me asking if everything was alright and if she could help.  And another woman asked me what was wrong with him. Hurts my heart but trying to keep strong...

Sleeping on the drive to appointment. Seth with his special
"blue blankie".

The "culprit" of the Biscuit burnout.

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).