Wednesday, May 29, 2013

testing testing 1-2-3

In the world of special needs one conversation that you inevitably face is testing for the dreaded IEP.  I have heard about it since my very first "support" group meeting when I had one tiny innocent three month old baby.  There are many pre-concieved notions that go into this process because you are fed many tidbits of information by numerous caring, concerned parents in similar circumstances.  I absorbed all of this info, whirling in my head, will they push him, will he be distracted, will he be scared because it's in a strange place, will he feel like it's torture because it's an hour over the course of two-three times?  Do I want to hear the results?  THE results of what your child can and can't do neatly summarized into printed out white sterile sheets of paper.  Does this make my child? Does this break my child? Does this mar him for his future in school because if he is awful than the expectations are too low, if he is awesome than is the bar too high? Is there ever too high?  You see, lots of thoughts and questions swirl in this world.  This microcosm of parenting with a special needs child.  Add in the stress of have you done enough up until this point? Shit I haven't even worked with him on pointing to objects in photos, why didn't I do that more? Come on Nolan- you grab your cheerios with a pincer grasp every DAY!  Oh good he knows his shapes, oh crap you want him to do it within a certain time and he has to repeat it FOUR FRIGGING times??? CRAP oh CRAP.

It's what I was expecting, those feelings.  They were there, I am not going to lie.  I sat there justifying to myself that of course he wasn't going to repeat it perfectly, he hasn't done it before.  And we are in a strange place and now someone he doesn't know is asking him things and he can't stop staring at her.  This isn't fair ran through my head a brief moment and then I stopped.  I stopped it all.  I sat there still and though to myself.  No this isn't what it's all about.  This is a fricking test, just like Graham takes and Audrey will take and they will also be measured and no one will care if their dog died the night before, or they just got over puking or I screamed at them that morning.  It's life.  And I felt better.  I realized Nolan is in this world of life and the real world just as they are and truth be told you do have a time limit and you do have to sit still and focus when you don't want to.  You do have to listen to strangers and go into weird rooms and sit in different chairs.  It's harder for him, yes.  But, life won't change for him, won't mold to his brain or his time frame.  Trust me old people and parking spots don't hurry for my world either.  It's life.  And instantly I felt better, this doesn't have to be stressful and agonizing, this is just another hoop and another aspect of Nolan that is different, not worse, not better, different.  The rest of the time, I smiled, knowing his accomplishments are well earned and his teachers pride filled that room.  I smiled because he had an exceptionally adorable outfit on and his hair was curling in the humidity, shallow but truly precious.  I smiled because as I walked out of there, I didn't hang in shame or frustration or anger, I rose to being his mama and knowing when he needs me to kick someone's ass I will do it, but so far he's doing just fine.  It felt good and also I have appreciated for ONCE in my life my realistic attitude, ok fine some say it's pessimistic, but I don't.  I know each of our children's limitations and I think that's fine, it prepares all of us for when they fall and instead of sitting there with my mouth stuck open I can simply wrap my arms around them and say it's ok they are awesome just as they are.  After all, who really cares if you can stack 5 blocks or 7?

Friday, May 24, 2013

Your kid's a loser

Got your attention? Winner and loser have that ability a simple label that means so much in so many ways.  Graham's baseball season started this year and for those that don't know the history, here's a little background.  Jeremy loves sports and competition and truth be told, so do I.  We always fantasized about a boy that was ALL boy, that loved sports.  Graham has his own ideas, always had, no I mean seroiusly since womb, that kid has been an originial.  Most mom's will gripe about their boys non-stop physical agression and overly loud obnoxious behaviors, not Graham.  He's calm, calculated, percise, our thinker.  I saw him squish an ant with his flip flop once and was shocked, as he truly coined the phrase, "he won't hurt a fly."  I worry about that with G, he has such empathy for others, a truly compassionate, gentle heart and I worry that being a boy in our society, that may be tough for him.  In fact there is a boy in school that Graham has befriended and his teacher lovingly called us because it's preventing Graham from playing with his other friends.  You see every time Graham tries to this boy gets upset and cries and Graham tries to tell him- 'let's all play with everyone', but the boy won't and so Graham stops and goes and plays with him, because no one else will and he feels badly.  I have talked to him numerous times about how he can't control others choices and it's wonderful that he tries to help him, but ultimately he has to make that choice and enabling the boy isn't helping him learn that isn't how to make friends.  Life lessons are hard and often times painful. (Trust me- I get that) It's a hard balance teaching your kids to care for their needs, but also those around them.  But, Graham also has a boat load of confidence and he can be bossy, assertive, domineering and stubborn.  Just not physcially.  So, I didn't know if our (little)big boy was going to want to even play baseball let alone twice a week.  Jeremy insisted that he wanted to do this with him and he was doing it.  I reliqueshed control, a rare occurance, and again, Jeremy was right.  Well, kind of.  Graham is no all-star althete, quite the contrary.  But he is trying, working hard, getting out there, doing something outside his comfort zone and it's awesome to watch.  Nothing gives me greater pride than our kids pushing themselves outside of their strengths.  As proud I am of Graham and his academic accomplishments, when I see him working so hard on baseball I tear up.  Because he was born gifted with a great brain, that's easy for him, and that's great.  But working on something, earning it, that is a true accomplishment.  He is so seroius, too serious of course, in his position, whatever that may be that inning.  He listens, while other boys are running around in circles, Graham won't leave his "ready" position. 

He asks all game long, along with the other boys on the team, "Who's winning?" "Are we winning?".  And there in lies my problem.  There are no winners??? WHAT?  No losers??? WHAT??? Who came up with this cockamamey crap??? Life is winning and losing.  LIFE is learning to cope with being a LOSER when all you want is to WIN!  It sucks.  It's not a fun lesson to learn, but OH so important to learn it.  I have failed to understand or empathize with ANY theory that be presented to me of why your kid can't be a loser.  Your kid is in fact going to one day be a loser!  It's a fact.  And to delay that implying that one day it will be easier for them, I just don't believe it.  I think the sooner that lesson be learned the better.  People who know us know this.  Because don't think for a minute we let our kids beat us at candy land or war or zingo...oh no, we WIN.  And trust me when they finally, inevitably do win, wow is it a sweet victory.  There will always be winners and losers in our house.  More important that ANYTHING else to us is that they learn to be losers.  Maybe because I am a horrible loser.  The worst kind, excuse making, challenging a another match instantly or plain out refusing to play said game for risk of losing again!  ICK!  Who wants that?  Our rule is, you lose and you congratulate the winner, you are happy for them too.  They got to win and that's fun and you keep trying for your turn in the sun.  If you try and try and try you too shall win someday at something.  Not everything, not everytime and certainly not EVERY game of baseball. 

I just can't wrap my brain around it.  If you are afraid the kids in baseball will get slaughtered and lose every game- which isn't likely, since really none of them can play.  The swing would likely be a couple of plays actually made causing a player to get out and costing a run or two.  But, why call it a game?  Why not just run drills and skills and have one game/show at the end of the year like gymnastics does at Audrey's age?  What bothers me, is the kids are now losing that drive.  They are beginning to ask less already, care less and it bites.  Truly, because I like healthy competition.  I think it's good for all of us, keeps us trying and doing our best.  But, to tell everyone you are awesome and great just because you stand there and not separate any of that out? That is just plain ridiculous.

Sunday, May 12, 2013

shallow end

The past two weeks has been a whirlwind.  Many of you know via facebook that EJ was hospitalized for the first time since he was born.  He had lost over 2lbs and from a 12lb start, that isn't good.  He had a temp of 102 and was extremely dehydrated.  He required an IV and spent two nights there.  It was startling and eye opening as any sudden hospitalization is.  But, also Jeremy was completely ill and out of commission as well.  So, there I sat, alone...for many hours.  Of course, amazing friends and family occupied my time and brought their love support and most importantly food.  But, in the trenches there in the night, the beeping of machines were my company.  The screams of a baby next door for her mama my horror.  The nurses every two hour visits my frustrations.  I had many hours to think about life as our older kids were concerned about EJ and wishing mama was home.  Most of the time was spent realizing despite our circumstances, how minor this all was in the scheme of so many of my friends and their struggles.  It's good to open your heart to others pain, you learn to appreciate your own for what it isn't, instead of wallowing in it.

Jeremy is in sales and he kicks ass, simply put, and a shameless brag.  But, really he works his butt off and this year it paid off, he was invited to Sales Club, which for those that don't know if a trip for the top reps from a company annually that bring their spouses and it's all expenses paid.  We have gone before and I kind of know the ropes.  He had switched companies prior to Nolan's birth and this was our first Club after.  I was excited to go, had a ton on my to do list which included cleaning my house, buying outfits that weren't maternity wear from last summer, getting teacher appreciation gifts, getting my step-dad's birthday gift, organizing Graham's birthday party, getting mother's day gifts for the mama's, grocery shopping for my dad and his wife while they stayed here, getting the mini cleaned, getting new makeup that didn't have fur growing on it and packing- yeah I had a lot to take care of, and since the week prior Nolan was sick I was behind, really behind.  Then EJ got really sick and the world stopped along with any tasks.  So, staring out blankly at the red flashing light illuminating the hospital room and all the racing thoughts in my head of what I should be doing, just stopped.  The trip would have to not happen, I mean we couldn't leave now, with EJ so sick.  But, Jeremy and I needed this so badly, we have been under so much stress, both of us.  And we needed to laugh and have fun and be without sick kiddos for a bit.  Amazingly we got released from the hospital and on the plane on time.  My dad's wife is a nurse, so that helped and EJ was doing a ton better of course.

We arrived at the airport to be greeted by a man with a sign and a black car to take the two of us to the Four Seasons, a stark contrast that wasn't wasted on me.  There I walked with a long flowing dress, holding hands with my handsome man and looking like we hadn't a care in the world.  Appearances are tricky aren't they?  I often tell myself that when some asshat (thank you Liz my new fav word) cuts me off in traffic.  You never know who you are crossing path's with and what they are experiencing so tread lightly.  We arrived in perfection, were sitting by a pool eating amazing food and cocktails in less than 24 hours out of the cold hospital room I had called home for over 2 days.  It made my stomach sick.  I told myself I needed it and to let go.  I did.  I chatted with wives about pools, houses, husbands, friends, money, jobs, kids, horses, faith, love, loss, you name it, I covered it.  With our hubbies golfing we spend a lot of time together us wives, and you learn a lot.  Mostly you learn that we are all the same, all have the same baggage and insecurities.  All cry and worry about the same issues surrounding our children and families.  but, still I couldn't help but feel different.  As if someone was going to jump out and say, "HEY what is SHE doing here???!!!".  Because I am different.  The life I go back to isn't a scarlet letter, it isn't something I hide or flinch from, but it is very different than most of the people there.  I try to sit in the shallow end as long as I can handle it.  I try to nod and smile and joke about dumb things, bet on shuffle board games, get drunk and dress to the nines and most would say I probably pulled it off.  I am not sure if that's good or not yet.  Truthfully it's hard sitting there in the land of perfect.  Because life isn't all pretty and I feel like that land is so fake now.  I just want to stand on my stretched out cushy lawn chair and shout, "hey tell a story of how fucked up each of you are!!!"  I decided we could use Jeremy's job so didn't do that!  But, really, I love living in the real, in the honest, in the who are you really.  So, dipping my toe in the shallow end has it's plus's but I wouldn't trade my deep end swims for anything.

I will forever appreciate the dichotomy of which our life is run, we are so blessed with material things and accomplishments and drenched also in a world of needs and desires that may never be fulfilled.  Jeremy had a few moments of squeezing my shoulder or nudging my legs throughout this trip.  We would debrief later about my outrageous actions that required attention.  Usually they involved crossing a boundary with a vice president of the company or something like's hard for me.  The deciphering of who I need to be "on" around.  I find that I have less and less time for that, and more time for the "we are all people, president, vice president, billionaire or no-aire", I just see a person.  It's rather freeing but not so much for the person that works there I guess? Ah well, it's never boring around here!