Peek A Hoo

Wednesday, October 6, 2010

The Best Kind of Different

It's a book.  About raising an Aspergers child in the middle of "the rest of life."  By Shonda Schilling.

This book has literally touched me to my soul.  From the moment that I read the first chapter, I was hooked.  This was exactly what I was living in raising a child that was somehow "different" but I wasn't sure how.  Because for me, I had no children to compare my "different" child, I wasn't alerted to his "offness" until after his K year in school.  His teacher had come to Flyboy and myself and told us that he was "loud" and "talked a lot," especially out of turn.  I shrugged it off thinking that he was a 5year old....with the genes of loud parents...and was an only child, so hadn't learned "turn taking" rules yet.  We went through a number of other issues that led us to the initial diagnoses of ADHD/ADD, which you can read here.  But even after 2 phsychiatrists, 2 neurologists, and 2 therapists, and a 10 day inpatient hospitalization later...we are STILL trying to find out what is going on with our "different" child.
I know that when we took Bug into CHOP (Children's Hospital of Philadelphia) back in spring of 2009, just before he was hospitalized...and just moments before I looked like this....(due to my hatred for the so-called psychiatrist in the Cherry Hill, NJ area that ended up putting my son on so many BiPolar drugs that he could have caused death in my then 10 year old)...

....we were asked if Bug had ever been tested for Aspergers/ASD.  I was thinking that the nurse must have been crazy.  I had witnessed autistic children before and Bug was certainly NOT autistic.  But, nevertheless, her words did not go unheard.  And after MANY MANY hours of dead end research, phone calls and transfers from one office to another, we ended up at this "wonderful" clinic for neurology in NJ.  Now, I won't say that they weren't great with the kids.  And I wouldn't even say that they weren't equiped with the right tools to find the "problem" with Bug.  But, what I will say is this....they were over worked and under staffed with nurses/doctors.  The "head" doctor was leaving to go off on a book writing adventure and I think we were his last "intake" patient and because of that, we didn't get the time and energy devoted to us that I feel we should have.  Instead, we were thrusted into the hands of the "other" doctor in the practice, who was the "medicine" guy basically, & also a therapist in the same building.  The "medicine" doctor really didn't do anything but assign us to have blood work done now and then to make sure that Bug's body was doing OK with the meds that he was prescribed.  No, not the medications that THIS doctor prescribed, but the SAME FUCKING MEDS THAT HE WAS DETOXED TO IN THE INPATIENT VISIT.  WTF?!?!?  So, anyhow, you can see why I would look like the that.  Or this....

So, instead of wallowing in the defeat, we keep moving forward.  Tiny steps.  Baby steps.  But still, they are forward and not backwards.  We kept our strength, even though at times we wanted to lie down and cry instead.  We powered our minds and hearts with books and research until one day over a year later, for whatever reason, we saw it.  We KNEW it.  Bug has Aspergers...a high functioning form of autism.  No, he didn't rock and have the need to touch everything in the room.  No, he wasn't unable to speak or communicate.  BUT, yes, he exhibited many many many of the other signs/symptoms of "high functioning autism" or Aspergers.

Here are a few of Bug's specific behaviors:
Could say “Mom-Mom”  at 5 months
Could sit and drink from a sippy cup at 6 months
Could crawl at 8 months
Could walk at 11 months
Could eat with a spoon at 14 months - very messy and still is!
Could string multiple words together/sentences by 18 months
Distinct food dislikes by 18 months (tomatoes in particular)
Distinct food LIKES -- Velveeta Shells N Cheese (only this brand), White American Cheese from Subway (and ONLY from Subway), Rice-A-Roni Rice Pilaf (only this brand and type), etc...
His foods CANNOT be mixed together.  They really shouldn’t even be touching each other on his plate.  He will ask for a new plate for seconds if the first one is messy.
Potty Trained completely by age 3
Likes to play only if by his rules and his imagination, age 2 - current
Because of the above, he gets along better with younger children, but tends to rather be alone.
HUGE into dinosaurs (knew names and stats by age 3-4) and preferred factual books over fictional stories about dinosaurs
Advanced vocabulary, age 5 - current
Kindergarten teacher flagged him for being TOO LOUD and not knowing when to stop talking, & bursting into conversations and lectures....
HUGE into bugs at age 5-6
Attempted to play baseball/soccer at 4-6 years, slow hand/eye coordination to swing bat or catch ball - liked to think he was a great soccer player but never touched the ball
Could not tie shoes or do snaps or buttons until ~age 8/9  (still prefers not to do these things - asks for velcro shoes, doesn’t unbutton pants when removing or putting on)
Went to speech class for repetition of words/phrases “I want...I want...I want to...I want to...I want to go to the bath....I want to go to the bathroom.”  Also copies movies, line for line sometimes.
First Grade teacher was very strict and set in her ways, just had him move his desk next to hers, separating him from rest of class to his embarrassment.
Makes “quacking” noise, age 6 - current  (sometimes more often than others)
Some strange language structures - “Is what it is....”  “Is what I want is....”
Picks at his skin and chews nails all the time, starting to obsess about pimples
Lies a LOT...but he even seems convinced that the lie is true??
Thought he could “talk to the animals and birds,” age 6 - current
Very sensitive to certain clothes - textures on his skin, too tight, too loose
Had trouble holding a pencil correctly until ~age 8
Has to really concentrate and write slowly to have good handwriting
HUGE into coins, age 6-9 - collections galore
Collects MARBLES....???  Doesn’t play with them, just collects them.
Collects Rocks & Seashells -- a gazillion of them in boxes. 
Loves to build with LEGOs but does not want to follow directions...only free build.
Could not ride a bike until age 9
Excessive Fears : dark, vampires, werewolves, dogs, spiders, heights, water
Just learning to swim really THIS YEAR .... at 11 years old.
Always asking about the worst possible scenario -- “what happens if...”
Very uncomfortable in social situations - even at dinner with only his family
Prefers to be alone, isolated at any time of the day
Has only ever been able to have 1 friend at any given time, if any
Always OVERLY concerned about every little thing his sisters do - constant tattling on his little sisters, age 7 - current
HUGE into video games, specifically HALO & ASSASSINS CREED, age 9 - current, will ask over and over if he can “play” and if you say no, he is depressed.  But comes right back within 30 min to see if you changed your mind.  Even when he knows he shouldn’t ask, he will come to me and look at me until I say “yes” or “no” about video games.  He knows if he just stares at me that I can read what he wants.  :)
Always “bored” if he can’t play video games - has no interest in anything else
Enjoys one-sided conversations, does not really want to hear anyone else’s reasoning or opinions
Doesn’t understand when someone is not interested in what he is talking about - you have to physically tell him “Bug, I am really not interested in talking about this anymore” before he stops.  (Doesn’t seem to care if you are doing something else, with your back to him, or talking to someone else....he just keeps going!)
Doesn’t get sarcasm very well.  He will ask “did you just use sarcasm” instead of just knowing.  Jokes are the same unless they are silly “knock-knock” jokes that he has determined are “suppose” to be funny.
Thinks non-sensical knock-knock jokes that HE makes up are hilarious. 
Feelings have always been SUPER EASILY hurt
Rituals/Routines, especially at night - pillow walls, stuffed animals arranged “just so,”  up to use restroom multiple times, turns all lights on that are on his path / During the Day, he wants to know the exact plan, including times, and if we stray from that plan, he has a fit.
Excellent in Science & History; struggles with Math
Keeps the shades in his room pulled 24/7 -- complains in the car that “damn sun is too bright” and enjoys bringing a blanket to cover up his head with.
Loves to play and build “forts” with blankets - he feels safe inside and will giggle with excitement when he has that “safe” feeling
Sleep issues - doesn’t sleep at all some nights, other nights he is wide awake until well after midnight.
Suicidal at times
Has difficulty cutting his food up.  (waffles, meat, etc)
Is an “expert” in XBOX video games (specifically Bungee games) & earth/animal science - CANNOT be proven wrong in these matter how wrong he might be.
Gets overwhelmed and angry quickly.
Insistent on doing what he wants to do regardless of any consequences.  (No matter how tough the discipline might be.)
Is not completely anti-social all of the time. He likes to interact with certain people at certain times.  Some days are better than others.  And once he is upset by something, he shuts down completely.
His way is always RIGHT, regardless of what anyone else might say. 

In many other ways, Bug was as typical as a kid gets.  But, there were these differences that made him stand out from the crowd.  That made raising him seem like more of a chore than anything else.  We love him with all of our hearts, but damn, he makes it hard on a lot of occasions.  And from that, we, as parents have guilt.  Guilt about why it is sometimes so hard to just love our child and want to be with him.  Guilt in knowing that because of the Aspergers, Bug IS different and needs to be parented as such...but that we haven't in the 11 years of life because we didn't know.  Guilt because we feel bad that, while we love him so fucking much, he won't ever be the person we "thought" he would be.  Guilt because as parents, we don't know where to go from here.  And as parents, aren't we suppose to have the answers?   

This book, The Best Kind of Different, addresses one woman's journey as she faced many of these challenges and took on day to day life at the same time.  In it, I could feel her anxiety and feel her stress and worry at times and then at others, I could relate with her moments of elatedness.  I haven't quite made it to the point where I am capable of completely accepting the situation for what it is 100% of the time.  But I am working on it.  And Shonda Schilling gave me hope that I, too, will someday be as comfortable with Bug's "kind of different" too. 

1 comment:

The Meditative Mom said...

Just popping in to say hi from Twitter. You're a really good writer. Cute website too!