Tuesday, February 18, 2014

the truth about brittin

as brittin has gotten older, i've found that half the battle is admitting she has special needs.  "special needs".... that so ridiculously PC.   today is brittin's annual IEP... Individualized Education Plan.   basically, it's where mike & i sit down with all her teachers, therapists, and para-pro... and listen to what she can't do and how far off track she is.   it's a great time.  i'm starting to become numb to them really.  

as i was psyching myself up for this... and having a particularly rough few days with britt...  i thought, it's time for a REAL blog about brittin.  one that may sound harsh.... but when i stop to think HOW MANY PEOPLE I KNOW with "special needs" children, i'm hoping this blog will let them know, they aren't alone with their REAL thoughts and feelings.

**************WARNING****************** THIS BLOG WILL BE FREE OF TECHNICAL JARGON RELATED TO BRITTIN'S CONDITION AND WILL BE MY REAL FEELINGS.

BRITTIN DOESN'T "FIT IN" 

.... this is probably the HARDEST for me to accept.  personally, my life revolves around "fitting in".   and to watch my daughter... NOT fit in... may be more difficult for me than it is for her.  

she's too "average" to be placed in Special Needs programs, and she's too "slow" when trying to function in an average class.   there's no "some where in the middle" program!!!   and really, this applies socially as well.  average children are nice to her,  but don't understand her... and she doesn't understand children with more intense special needs. 


BRITTIN STARES because her processing time is really delayed.  and on top of that, she doesn't understand facial expressions.  those issues together equal some awkward moments with strangers!   we've only had a couple of truly RUDE people say something about the staring... but it's just awkward.  and don't ask about "teaching" or "training" her not to... we've tried.  that's like training your average child not to speak.  

BRITTIN "LOOKS NORMAL", WHICH ALMOST MAKES IT WORSE... if brittin is sitting, not moving or talking, you would NEVER know anything is different.  even when you strike up your first conversation with britt, you probably won't notice right away.

BRITTIN HAS NO CONCEPT OF TIME... seriously, NO.  CONCEPT.  OF.  TIME.  she may tell you "we went to Disney World last night" but we really went last year.  or she may tell you "I'm going to see my grandma today" but it could really be next week!  

or if she knows we're going to do something that is exciting to her, she will ask EVERY 10 MINUTES IF IT'S TIME YET!!!!!  really... not kidding.  i try to NEVER tell her she's going to Aunt Traci's, or to a friends until it's time to put the coat on!  i made the mistake of telling her about the Daddy/Daughter Dance 10 days before it happened. BIG.  HUGE.  MISTAKE. every morning when she woke up "am i going to the daddy/daughter dance today??"

BRITTIN DOESN'T UNDERSTAND VOICE INFLECTION... you know that "sassy tone" that your child uses when they are so mad at you???  hear it in your head ... "yes MoM!"  OH... it's sooo annoying!  well, brittin does NOT understand how to NOT do it.  we've tried.  i'm not sure if she doesn't hear it... or can't stop...  

she also doesn't understand when we use a different tone of voice.  

BRITTIN DOESN'T UNDERSTAND SARCASM OR HUMOR ... everything brittin does or says is literal.  really literal.  it's almost like living with Amelia Bedelia.    brittin doesn't even like when we laugh... and we don't know why.  

BRITTIN NEEDS STRUCTURE AND CHANGE IS HER ARCH NEMESIS... it's like Amelia Bedelia and Rainman... with a splash of Monk.  and if you know ME... my idea of a routine is "wake up in the morning, go to bed at night, and do some stuff in the middle".  britt needs to know the hour by hour plan, it needs to be the same every day.  she knows "school days" "stay home day" aka Saturday, and "church day".... school breaks, snow days, vacations, throw her outta whack!  we spend the first three weeks of summer vacation just reassuring her she WILL go back to school in August... which of course means NOTHING to her.  

BRITTIN DOES NOT SHARE... what a touchy subject.  our society is all SHARE SHARE SHARE!!!  i think we train our kids that way so when 20% of their paycheck is missing later, we can just say "you're sharing!!"  anyway... BRITTIN DOES NOT SHARE.  if it's hers, it's hers.  if it's yours, she'd really like to borrow it, but will gladly return it to it's original place when she's ready.  if you attempt to borrow something of hers, be ready for a  FULL.  ON.  FREAK.  OUT.  i mean FULL ON!  i wanted to borrow her heart scarf on valentine's day.  it went something like this:

me - "brittin, i would like to borrow your scarf.  is that ok?"

brittin-  "yes.  are you going to give it back?"

me- "yes.  after work."

brittin "ok.  are you going to give it back.  give it back.  give it back.  that's my scarf"

the next 15 minutes were spent attempting a "scarf trade", unsuccessfully... getting in the car... driving to the sitter... getting into the sitters house... and it sounded like "THAT'S MY SCARF.  I HATE SCHOOL.  I FEEL SICK.  I NEED TO STAY HOME.  I HATE DOGS. THAT'S MY SCARF.  FIRE FIRE, THE HOUSE IS ON FIRE".  

and lexi, brady, jared, and i just listened... i'm pretty sure there was snot... and tears... oh, and the throwing of an egg sandwich all over my car.  

ALL BECAUSE I BORROWED A SCARF.

now... you're probably asking yourself, "did she give the scarf back??"  NO.  did i do the right thing??   i have NO IDEA.  but she made it through the day.  i gave the scarf back as promised when i got home.  i don't plan on borrowing it again any time soon! 


BRITTIN HAS NO CONCEPT OF NUMBERS OR MONEY ... money means nothing.  she has walked into walmart with $5 and wanted to buy a lawn mower.  the other day, when her brother and sister loaded the cart with stuff they wanted, brittin was totally satisfied with the EOS Lip Balm she found.  it didn't matter to her that they were each spending $40+... and she had a $3 item.  she was happy!  i know this is going to be both a blessing and a curse throughout her life.  

BRITTIN DOESN'T UNDERSTAND TRUTH VS. LIE ... it's difficult to say "lie".   to me, "lie" means you are intentionally deceiving someone.  i don't think brittin is a malicious liar, she just can't seem to understand the difference between TRUTH and NOT TRUTH.  some of my very favorites are "today is my mom's birthday!!"; "my mom has cancer and the doctor says i have to stay away from her"; "my mom and i like to go to the movies to watch spiderman!".       wow... they all involve me :\

BRITTIN HAS NO SENSE OF DIRECTION... which is why, after THREE YEARS at our church, brittin still can't leave her seat, go to the bathroom, and come back to her seat.  not.  gonna.  happen.  she WILL get lost... or sidetracked by a squirrel.  she can't cross the street to play with a friend.  she can't use the restroom at a restaurant.  she really can't even go downstairs and make it to brady's room.  



WHY ***********  WHY ************  WHY**********


so WHY is brittin like this???  well, i didn't want this to be a technical mumbo jumbo blog, so the answer is this:

she has a brain birth defect that keeps the 2 sides of her brain from communicating with each other.  and on top of that, she has brain damage from a stroke.

so there... that's basically the tip of the iceberg.  when people wonder WHY i want to quit my job... its so i can be with her.  there's sooooo much more to Brittin than meets the eye.

in less than an hour, i'll head to her school... listen to all the things she can't do... and then i'll come back here and make a list of things she CAN.  :)








1 comment:

  1. I know Adora's situation is totally different than Brittin's but I can relate to the IEP meetings and being told how far behind Adora is and what she can't do. Also a major frustration is her teacher keeps pushing that she has ADD or ADHD and wants her on pills. The only time Adora seems to have the problem of not paying attention is in her classroom. With the speech therapist, reading teacher, and at the YMCA during homework time she does fine. Anyways I think I got off track but I just want to say I love reading your blogs because you tell it how it is the good, the bad, and the ugly sides of it all. You help put things in perspective and I love that!

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