5/11/04

Again comes the Spring....again comes the day.
'The Season of Grief', to which I have often referred any significant occurrence during this time.

It's been seven years.

7 years since the pediatrician denied the request for admitting him into the hospital. It was 'only bronchitis and not pneumonia'. She was right. But bronchitis can kill a child who has detrimentally developmental issues, and/or hypotonia....and it did. His weakened little body could not possibly come up with the resources required to clear one's own lungs.
And bronchitis did kill.
Kill.
My son.

After he died, someone told me not to make any Big Decisions within a year....and I didn't.
After he died, someone told me that it would take 3 yrs and 3 days to 'recover' from my grief.
After he died, someone told me that I needed to 'just let go'....
After he died, my life took on
a
new)}+
shape.

This is my history.
This is my life.


This is Ours to share or not.


I don't mean to get all.....
morose
or
overly poignant....

But this day was the day I said

'GoodbyeI'msosorryIletyoudownbylettingyoudie......'

And I am still sorry.
Because if a parent cannot keep their child alive, then what worth do they have??


But I am here.
And I am parent,mother,doctor,paper.

I am everything to them, I am nothing.

I have ashes in my cupboard.

I will survive this, because I choose now...

to LIVE it.



I will not passively let this day pass me by.

I will live it.

I will live every moment of it.

Bubbles' Apraxia & Speech Update: Now with Video!

Bubbles is making crazy progress with his speech lately; there is no denying that this child has a sense of humor. Even his speech therapist (the Guru) feels the need to take notes as he continually amazes her in sessions.
On Monday, she was sound-pairing and building syllables with him. Each word or sound is enunciated with sing-song-y tones, and she makes it very rhythmic, often tapping out each word on the table. He repeats everything she says without hesitation.

Big ant: Big ant.
Big black ant: Big black ant.
Big black ant goes: Big black ant goes.
Big black ant goes up: Big black ant goes up!

So, this went on once or twice, until she was satisfied with his progress. He waited politely until after she had stopped with the 'big ant' and put the picture down, and then he said,
"It's a spider."

I know, he slays me too.


His most amazing accomplishment is dazzling, however. A few weeks ago, he found the video case for The Letter Factory, and asked to watch it. I put it on for him, and after happily watching it, he went back to asking for Thomas videos.

The other day, I noticed him with a book - a remnant from his sister's long-ignored Leappad (the extra large blue one) which may or may not have accidentally made it into a donation box and out of our garage (am afraid to look).

He showed me the pages with the pictures of slightly anthropomorphic letters.
Pointing to the 'Z', he then sang, "Zuh-zuh-zuh....zuh-zuh-zuh..." to the tune of Brahm's lullaby (just like on the Letter Factory). Next, to the 'W', insisting, "Whah! Wuh-wuh-wuh-whah!"
I pointed to: J, N, M, V, T...he knew the correct sounds for each of them! He didn't label the letter, but made the sounds for these consonants and then I realized that he also knew 'O' and 'A'.

The boy is a bright little bulb.

One more version posted here.

Next year, please come back to Blogher, Leapfrog! I really appreciated the useful shiny aluminum water bottles last year, but next time I just may bust out the cash for the Tag system!

Live and Let Live

I recently got a comment about my reaction to Prop 8/Hate from someone whose name I actually can remember, but I will save her the embarrassment and refer to her as:
Angry Stupid Shrew With Ignorant Persona Edified.

A.S.S.W.I.P.E.'s was one of the few comments I have ever deleted, but it bordered on defamation and libel and I am seriously doubting she wants the trouble, so it had to be done - out of respect for her future.
A.S.S.W.I.P.E. was very offended by my bird. You remember? The bluebirds for bigots?
If the shoe fits, wear it, right?
If not, walk away. There are plenty of other shoe stores out there.

Apparently, A.S.S.W.I.P.E. was so offended by my bird (even though she did admit that she found me attractive!) that it evoked the following strong words from her:
Live and let live.

At first I was livid! Poke fun at human rights, would she? How could she be so blatantly, so stupidly, hypocritical to condemn me for my reaction to hatred and bigotry and three giant steps back for humankind? Surely she was living in a hole if she thought that the words 'live and let live' did not apply to Prop 8/Hate- or even to her beliefs!

(By the way, dear readers; When you think of word for 'bangs fist against forehead in attempts to come up with a word that means the agony which I feel when I encounter such stupidity!', please let me know. I could use a word like that now.)

Think about it.
Live.
And.
Let live.

(I guess if you read between the lines somewhere there may be the message 'go out there and vote to make sure that some certain people are not going to have the same rights as yours just cause they're different from you!' but I had a hard time finding that at first.)

But then, what I finally realized, was that A.S.S.W.I.P.E. was not echoing her own ill-thought credo to me, rather, she was finally coming to accept what was so horrendously ugly about her original decision to vote Hate.

Live and let live.

I am glad that I could help educate her.


It makes me feel all warm - in that 'scotch going down slowly' way.

Haters Are All Around Us

To those of you who have asked how I can 'spew hatred' at haters, I say to you this:

This was not a choice about anything other than hate.
People were offered a choice to hate or not to hate. We in California, got to vote for hate or against it.
We were offered the opportunity to vote for discrimination or against it.
Sadly, the vote for discrimination (or fear?) won.

HOW does prohibiting any deserving person from appreciating the same rights as are afforded to you, NOT promote hate?
I CAN accept that others have different viewpoints, but the irony seems to weigh in heavily on the fact that proposition 8 was all about hating, promoting hatred, and promoting homophobia. And it was all justified under the fallacy of 'protection' for a sacred institution of love.

HOW does disallowing two people in love to be sanctioned and or become a family protect your own veil of superiority?

How can the Mormon church - how can any church - propagate such a movement behind hatred when their own beliefs and doctrine of polygamists' superiority were only reformed when their statehood was at stake?

I don't understand.

You who voted yes on 8 deserve every flipping bird and look of disgust that the internet dishes out to you. You, who went out of your way to hurt others, to promote separatism and bigotry?

I promise you that you are deserving.

Actually, have another one.

FUNDAMENTALLY, I have to mention something....

There's a new buzzword for the McCain campaign.

First we heard from GW that the fundamentals of our economy were strong.

Now, in an interview with the editorial board of the Des Moines Register, McCain repeatedly
(and very angrily) expresses how he 'fundamentally disagrees' with the implication that SP is inexperienced and he fundamentally disagrees that the American people don't like her. (I guess he also fundamentally disagrees with actual polls).

***weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeet!***

Did you hear the dogwhistle? Everytime I hear that word *fundamental* on the news, I imagine someone at the McCampaign claps their hands together and claims to have reclaimed another wayward liberal Christian, diverted on their path by visions of change, inclusion, faith, and love.

They are flailing, they need something...I get that, I really do.

But it just seems like another one of the talking points cheap trick distraction methods (LOOK, A PUPPY!) that the uber-conservatives have used to hijacked Christianity. This isn't news to people like my mother, and many good friends who have watched in jaw-dropping horror as 'their religion' has been abducted and absorbed into the conservative vision, re-invented and spewed back out in the form of Fundamentalism, Evangelism, and supremacy.
A political party religion which preaches intolerance, judgment, exclusion, racism, ignorance, hatred, fear.
While I know this is more prevalent in other parts of the country than this (thankfully) liberal bubble surrounding us (called: our region), even local friends who happen to also practice Christianity are feeling this separation of church and church. I wonder if that has anything to do with the frequent infusions of politics into faith. Hmmmm.....

Oh, and let us not forget how they have also managed to own 'life'! That is impressive.

If only a 'culture of life' could be further embraced by the American people.

Seriously. WTF IS THAT?


Tick, tick, tick....can you hear it?

I may be looking forward to the debate this evening just a teensy bit too much.

And now, I am new and improved...with twice the amount of spite!

Outreach Smackdown

I am outraged.

Livid.

Seething.


And no, this is not even about Voldemort's dumber-than-a-post veep choice.

I had a long conversation yesterday with a good friend who lives in a shoe - she has so many children, I hardly ever see her.
Okay, I may have made up the part about living in a shoe.

Her daughter is two and 1/2 years old, was a 33 week preemie, but born 'acting more like a thirty week old', which essentially means that she was born with a delay. Other than a (common-in-preemies) minor heart defect, her delays were not of concern or anything apparently severe. She has been monitored by the university infant development program, and has met most of her milestones, but has always had a bit of delay in most of her development. But now that she is over two, those delays show up with more distinction.
We talked for a while about her latest triptych to the doctor circuit; her pediatrician recommended an eye doctor, who examined the tot and found that, other than the obvious strabismus, her eyesight was rather perfect, but he suspected a neurological disorder and referred her to a neurologist, and the neurologist confirmed a suspected processing disorder and also suggested that she may possibly have...cerebral palsy.
Oh, wow. Just casually tossed that one into my friend's unsuspecting lap.
So naturally, my next question was, "So, how many hours of early intervention are you getting?"
"Oh...well...we go to the infant development clinic."
"No, not that. The early intervention people. Who send therapists to your house."
"Oh no. We don't have that."
"Isn't your doctor the chief ped at that practice (which also happens to be the practice that treats my daughter)?"
"Yes."
"But he never mentioned early intervention to you? In the entire time you have been bringing your preemie child to him?"
"Ummm...no. I think that the infant development people may have mentioned it once...but I confess...I thought 'ohgod, not another appointment I have to fit in!' and probably 'forgot' about it."
"Yeah, with your five kids, I am sure that was a deliberate oversight", I joked.
"But really. Your pediatrician? Never even mentioned? Early? Intervention? Seriously?"
"No, never."
I said I would need to call her back.


Then I walked up the road and threw myself into traffic. But I live in the mountains, and I was lying there for about twenty minutes when it occurred to me that not one car had passed. I got bored and returned to my house to call my friend back.

"Okay, let me explain to you what early intervention is like and why you want it. You are romping through a beautiful meadow, filled with wildflowers, someone is holding your hands at either side. That is the early intervention part.
You come running up to a cliff, whereupon the hand-holders abruptly stop and you jump off alone, landing at the hands (or feet) of the school district. That is when your child turns three. Yes, three."

"Oh. Whoa. As in, in six months."

"Yes. As in 'six months'."

"Do you have their number?" She wisely asked, and we wasted no more time chatting so that she could call the regional center post-haste.

One of the things our early intervention provider has been doing locally is outreach with pediatricians, after noting that many of the families receiving their services reported that their pediatrician suggested that they 'wait and see' when they shared developmental concerns about their young children. This is such a standard response; even I got it when I asked about Bubbles' speech at 20 months! The early part of early intervention is apparently lost in translation, and our doctors, those professionals who care for our children when they are sick, are seemingly unable to suggest intervention. Not only not suggest it, but also dismiss parental concerns, thereby often missing the window in which the most intensive assistance can be offered to a child.


Seems that someone needs an outreach smackdown, right quick.
Think that anyone would hire me if I branded myself as an 'Outreach Smackdown Specialist'?

While I am at it, another friend in a neighboring county was recently visiting and I asked her what kind of services she was receiving from her regional center for her autistic son. They moved from Texas less than a year ago, and her son, at the age of five, finally received an Autism diagnosis. I say finally, because she said she suspected from 18 months old that he was autistic. She said she was not getting any services from her regional center. I asked her why, and she said that he was over three, and therefore not eligible for early intervention services.
"But that doesn't matter!" I sputtered, "He has autism! He is eligible for help from them! Respite care, therapy!"
She had no idea either.
Both of the families to whom I refer are educated, well-informed parents. We all happen to be English-speaking. Can you imagine trying to wade through all of this information if you did not speak much English or were not privileged enough to have had an education?

So, for all the informed, misinformed, underinformed and slipping-through-the-cracks families out there, please read on to the five qualifiers that enable an individual to receive regional center services for the rest of their life. (This data is for California - I will start doing my research on other states, but if you know more about services in your own state, please let me know!):

1. Autism
2. Cerebral palsy
3. Debilitating seizure disorder
4. Mental retardation
5. A syndrome which must be treated with mental retardation as a component.

Everybody should know these facts; these rights to those we love and those in need.