Saturday, January 21, 2012

in which I talk about K ...

one of my biggest concerns has always been,
making sure my two oldest children are not 
left behind as I continuously advocate for aiden
and all of his needs.

even though aiden isn't quite caught up expressively with his hearing peers,
even though aiden is still having some pretty off balance days,
even though i am searching for a new school for him,
I have had to recently focus the majority of my energy on 
my two older loves.

and give myself frequent reminders that,
aiden's ok. his school is ok. his technology is on track.
his OT his pure amazingness.
we're starting a new AV program and
we continue to work hard with him at home.
the majority of my 
mom ENERGY though,
has had to be spent else where.
and as I'm not happy with all of aiden's current situation,
I've had to remind myself,
he's OKAY right now. I am not SUPERmom.
and as my mom frequently reminds me,
step by step, day by day.

I won't get into my challenges with my first born,
my lovely teenager, who's had his own struggles,
and has needed his mom, not partly, but full on,
and is learning to find "who he is" in a more positive way.
raising a teenager is.not easy.
but the sweet little boy i raised, is still there.
and to realize I haven't "lost" him, 
means the world. 
i SO love him, all the way
{to the moon ... and back}.

and now that I know he's okay,
it's time to excerpt the same energy to my girl. 
(whom this post is mainly about)

my FULL of LIFE,
with an AMAZING sense of humor,
and a  SMILE that lights up any room,
shy in public, but a LION at home.
HEART of gold,
 would befriend everyone and anyone, 
(just don't cross her).
has THE most contagious LAUGH,
SILLY beyond all get out,
 full of HEART,

she makes me SMILE.
(most of) all.the.time.

and for the past couple years I've been fighting.
to understand how she learns,
and can be successful,
and to make sure everyone understands the same,
because she learns in such a different way;
she's artistic, hands-on, visual; 
has ADD,
a low working memory,
and they just don't get it.

(note: working memory is your executive functioning part of the brain - it's where you go first
to do ANY and EVERYthing. one mom gave this excellent example: So imagine your daughter is in class and they tell the kids to complete their study guide. Your daughter might remember she has to get her book out, but she might not know the last time she completed a study guide, she had to first go to the glossary in the back of the book to first get the definition, and or get the page number where that definition is at, and then flip to that page, and then scan for that word and then viola, she will have the answer! See how many steps are involved in just the most simple thing(s)? Well imagine if she cant remember any or some of that. She sees everyone else quickly pull out their book and start working, and she is sorta lost. She doesn't want to look stupid, so she's trying to 'act' like she knows what she is doing-probably panicking inside because now she is falling behind, and someone might "see" that she doesn't know what she's doing, etc- so no surprise that her self esteem is low - mostly because it is self induced "how come i don't know what to do and everyone else does? I must be stupid.") 

and this is exactly how K thinks and what she goes through.
she hides it on the outside,
but confides in me, it's how she sometimes feels
on the inside.
and it breaks my heart ...
because she has such a heart of gold,
and such the personality.

last year, after fighting the district for over a year, we finally got her on an iep.
they couldn't understand why I would want her "labeled."
(this is what i'm dealing with).

I'm still learning about how she learns.
how her mind works.
so now i'm fighting to get her goals firmed up that
better meet HER NEEDS,
 not some generic goals that the district
can get by without truly doing a damn thing besides "checking for understanding". "preferential seating", and "signing her agenda book".

luckily last year, she had a teacher who modified and worked with K
to meet HER needs, and K was successful. she was positive about herself.
this year, not as much.

so back to square one - why does everything have to be such a fight?
why can't ALL teachers do what they're supposed to do
and realize not every student is "typical".
as a teacher, we constantly want our students to think "outside the box",
and sometimes, us teachers, need to think, "outside the box" too.

K is very much a VISUAL and TACTILE learner,
not to mention she needs frequent reminders and guidance of what to do,
what to bring home to study,
and small reminders of how AMAZING she is definitely wouldn't hurt.
she's smart. very smart. it's a matter of getting it out of her, in a little different way,
with a little extra patience, and a little extra time.

I met with the school psychologist yesterday, 
with my list of ideas for goals, to understand even better
just how my daughter learns and to figure out
how WE, as a team, can communicate to everyone on her team,
and TEACH them, how SHE learns best,
and how HER mind works.
my happy go lucky girl struggles.
and it's bringing down her self esteem,
and I refuse to let this happen.

you know what he told me?
"She's an average student who just needs to work harder than the others."
I took a deep breath. 

I then inquired about a computer program for kids
with low working memories, (that our insurance won't cover)
a program that would help her brain work to it's full potential AND improve her working memory.
and his reply?

"I'm researching them. Money's tight though. You understand that right?"

to which I chuckled sarcastically back,
"Of course. and YOU understand she is MY child right?
Who can I contact to help your efforts move along more quickly
because my daughter NEEDS this now."

then I left, letting them make me feel, once again,
like some crazed mom who's trying to make her child,
something's she's not. and had to remind myself,
I'm not the one NOT getting it.
I know MY daughter.
If she doesn't have me, who does she have?

and God works in mysterious ways.

That same afternoon, I received a phone call from our county's developmental board of disabilities.

(the same AMAZING board who provides funds to help aiden receive his wonderful OT
services that insurance won't pay for,
and other top notch services districts won't provide.
they want to HELP parents, HELP their child - imagine that).

a few weeks back, I took a long shot and sent in all of K's paperwork 
(ETR, IEP, past neuropsych evals, doctor's reports etc)
with the thought that maybe, just maybe they can help me help her, 
maybe they'll see what I've been trying to figure out on my own, 
but also thought, she'll never qualify. funds are tight.

but she did.

it was a bitterSWEET phone call.
because honestly, who truly wants to be in a position where their child DOES qualify,
yet when you're fighting tooth and nail for people to see what you see,
to help you understand what you can't quite put your thumb on,
and in turn they make you seem like some crazed woman,
because your child "is average and just needs to work harder", and
 then, BOOM. someone DOES see it?.?
I'm not crazy.

No, not crazy.
I'm a mom.
who knows her child,
and knows she needs a little more than your average joe.
because she's not average.
she's ABOVE average in all ways in my book.
and I'll never stop fighting for her,
I won't lower my expectations,
and will never quit fighting for her and what SHE NEEDS,
to be the AMAZING person she is.
in her own AMAZING way.

then I poured myself a glass of wine.
and cried a few of those "damn I hate she struggles, hate/love she qualified, what a big step this is" tears.
and it gave me the perfect amount of energy
to keep on,


Herding Grasshoppers said...

Oh my friend, my heart aches with you. We hate to see our kids struggle! And why does it have to be so difficult to figure out and then get them what they need?

But I'll say this,

Your kids are blessed. They have you.

:D Julie

AJ's Mom said...

Amazing post Tammy. Amazing.

Melanie said...

Best line: "I WON'T LOWER MY EXPECTATIONS." That, my friend, is why your kids will always do well in life. You rock.

Kat said...

I love Miss K and her mamma too! If there is anyone that can help her it is YOU! I know that with all my heart...keep fighting mamma bear like only you can!

Lily's Mom said...

You are such a wonderful mom! It would be nice if we didn't have to FIGHT all the time to get what's best for our kids.

Jennifer said...

This brought me to tears. You are such an amazing advocate for your children. It's so hard to have to fight for everything. Your children are blessed to have you.

Danielle said...

your amazing... beautiful post.

dlefler said...

Rock on, mama friend. Keep the bar raised high, fight the good fight, and watch your girl learn to fly. It is amazing how much resistance you can meet within the schools, isn't it?