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Saturday, January 06, 2007

Son of my heart


I wrote these words to some friends and realized how well they went with these pictures I took of Noah and I the following day:


I met with Noah's caseworker, this really wonderful dynamo of a woman named Beth, who is helping us get all kinds of services for him. We talked about how the public school is just not meeting his needs, though their intentions and hearts are set in the right place, their training and facilities are inadequate.

We talked about what is happening to my bright, fizzy, loving, driven, creative, charming, passionate baby boy (ok, he's just turned 6...but he's my BABY!); everyday he comes home crushed on some level. I don't know many 6 yr olds who hit themselves in the head, who call themselves dumb and stupid, who cry and say that want to die. I still reel when these things come from my child's mouth.

His mind is a dazzling and complex landscape where brilliant sunshine and raging storms plow through erratically, alternately blinding him with manic giddiness or sucking him up in a twister of rage. Sometimes both at once! And here he is, this tiny new soul, still trying to understand the world, and people, and though everyone who guides him tries hard to encourage him, the messages he hears and internalizes every single day are...
not good enough
unnacceptable
innappropriate
try harder
stop fussing
you're overreacting
get a grip
you're ruining everything
get away from me
you're scary
you're mean
you're bad

...and he is starting to believe it. We need to get him OUT of the mainstream educational system before it destroys him. He is an octagonal peg and they are jamming him into a round hole by whittling down his self esteem, his sense of self, his hope. I cannot stand by and watch my child be strangled by red tape while the almighty dollar holds sway over his future.

The suicide rate for boys with this disorder is terrifyingly high. I am in a fight for not just the quality of his life, but his life! His LIFE! And some days I get a glimpse of how very small I am on the battlefield, with the rusty little bugle I am trying to muster up a "charge!" with, and a shitty broken musket. And maybe a pack of smokes. Ha!

Anyway, sorry, it is something I can rant about for days. He is a fire in my heart all the time.

The upshot of this meeting was we are going to seek out of district placement for him. A special school that the town will have to pay for. This is going to be a HARD FIGHT. These things often involve lawyers, appeals, and general misery. The school we are aiming for has a $46 K annual tuition rate. We will have a fight on our hands.

So the person who really needs the glory love and prayers is Noah, whose spirit and mind are under fire everyday, and whose childhood is an emotional battlefield being slowly littered with memories of bad days. And prayers, too that the hearts and minds of those with the power to make a change for him are moved to do so, to make a call that changes the course of his entire future. So much for our family will ride on this. Everything, in fact.
Read more about what Noah is dealing with HERE.
Here is my baby boy:

7 comments:

Judi W. said...

lovely photos. can u home school him in the interim?

Amy said...

Nici. I am with you girl. I'd stand in front of a speeding locomotive for my 6 year old baby. You go!

J C said...

I feel your pain. I understand. I have been there,still am, and my daughter lives there too. God bless you and your precious son.

turquoise cro said...

I've never heard of this disorder, it is heart wrenching I can see! I will certainly be praying for your precious Noah and for those town people too! so they will be moved to tenderness of heart concerning your sweet son! xo,Cinda (the word verification is vyrmXO which I see as very room for hugs and kisses, in other words, hopefully he will be going to this other school!)

Lisa Oceandreamer Swifka said...

Reading this nearly broke my heart. To think at this day and age you have to fight for what's necessary makes me ill. And the tuition - who can afford that? Bless his precious soul for having this fight within himself and I sincerely hope there will be that CALL that changes everything!

cookievf said...

oh Nic,

Have you ever heard of the theory that we CHOOSE our parents? I believe that Noah could not have CHOSEN a better mom to love him as much as you do and to "fight the fight."

You are in my prayers and glad I found your blog!!
xo

smileymamaT said...

It IS going to be a fight. Keep fighting, keep doing what you're doing, every little teeny particle of his being is WORTH IT, and momma, us mommas are made for fighting.
Your love is strong and shines right through.
T