yes, there can. :(

A few months ago, I had a visit from a childhood friend whose son had also been diagnosed with autism. He's three, and has had / is currently receiving early intervention services (thanks to his diligent parents).

In the course of our catching up, she said she was still concerned because he walks off-balance, and I wasn't sure how to react to that - the reason being, it's not exactly a classic symptom our kids have.

So what do I do after she tells me that they're going to bring him back to his pediatrician for further evaluation? The...dumbest...thing...possible. I cringe just thinking about how utterly and incredibly idiotic I was to think I was reassuring her! *kicking myself*

I told her that "there could be nothing worse than getting a diagnosis of autism, so you will definitely be okay!" Well, there WAS something worse. Much worse. This.

My lesson is learned. I must remember that the world does not revolve around my kid's issues. I must remember that in this world, one cannot close oneself in a bubble of egocentricity because it prevents an empathy for parents who also suffer dealing with other conditions. In this world, one can't heal hearts by starting with the words "Well at least..." or "It can't be any worse than..." because a parent whose child is not considered "typical" could very well care less.

But most importantly, I must remember to pray, to love, to pray, to beg, to cry, to pray, to support, to educate others.....not just for MY issues, but for THEIRS as well, because the hard truth here is - we are all in this together. All of us.

Please accept this big hug, and this apology from the DEPTH of my heart.
I am truly sorry.
Truly.

Bowling, Birthdays, and Back-thens...

We decided to make it a Sunday FUN day for the fam, so the Huz thought it was time we dusted off our bowling bags, and head for the alleys! The last time we had gone, just a few months ago, NBear did a GREAT job! Seriously, it was nice to see her (although she did cover her ears every time the ball would inch near the pins - like she was bracing herself for an explosive collision) go up there and hurl her ball onto the wooden floor. LOL! I really do think that bowling is such good practice for our A-club kids, in that it helps with depth-perception practice (you know what I mean), and focus. Not to mention turn-taking:)

Unfortunately, we didn't have a camera handy (and you can forget about us taking pics with our phones and uploading them. Sounds just as easy as building a nuclear fusion machine!). Too bad! It would have caught the funny moments she had swinging the ball a good 5-7 times before deciding she wanted one of us to help her with the "letting go" part. She actually held people up because she would take SO long to let the ball go! *frustrating but funny!* After a few practice runs, though - I had my bowler back. This time it was even better: no more ear covering, and she remained focused on the ball as it made its painfully SLOW trip down the slippery road. Yeah, Mommy! I did it! I did it! :)

We celebrated her 3rd birthday party at the same bowling alley.
A few months after these photos were taken, she was officially diagnosed with autism.

I love this picture - I had just woken her up from a long nap, and she was not amused. Despite the beautiful braids and daddy's "Look at the camera!" requests, it was very difficult to get my future photographer to see the sense in needing to do such a simple task as...looking.

...but we never gave up, never stopped treating her like a regular kid, and the Huz took her up to the magical aisle for the FIRST time that day.
He gave her the ball, and they held on together...
...and even though (at that time) she didn't respond to the thrill of the moment, didn't smile when we all cheered her on, didn't seem to understand the happiness that swirled around the celebration of another year of her life, or didn't interact with her confused peers,

...she was still able to experience rolling the ball down the alley, and got a HUGE hug from the person who would - four years later - be the same one giving her DOUBLE HIGH-FIVES for scoring a 56. :)
I was right there with him!

good--bad days

Thank you, HopeFaithBelieve, for this - another story of yet another child whose life (we all hope) will one day be our child's.

Or at least, I do. :)

It's funny because just now I asked the Huz, "Honey - when NBear has her BAD days - are they GOOD--BAD days?" I laugh just seeing myself type that up, knowing how ridiculous that may look to anyone else. RIDICULOUS! It's either good or bad, right? Black or white? Hot and Cold? Yes and No? In and Out?...oh wait - too much Katy Perry does not a good blogger make! (NBear LOVES that song to death, by the way).

The Huz replies by telling me that she can at least verbalize what she wants now (I know), as opposed to being non-verbal (I know). She knows what she wants, and how to express that (I know), and for that we should be thankful (I am). *sigh* When my friends ask me how she's doing now that she's pretty much off her regular biomeds routine, I answer with a very honest, "I don't notice too much of a difference - I mean, she's still doing fine!" - and then I need to step back and look at the bigger picture: can she be doing BETTER? Did we make a mistake and pull her out too early? It is nerve-wracking indeed.

My gut tells me that we need to wait to replenish our funds first, before plunging back into another DAN! session. But, is it doing her any good?

THAT - is what kills me. :( Bummer.

March already?

*My how time flies*

I'm currently enduring an NBear not-so-hot moment. *sigh*

What would you do if your child decides to strap on her hot-pink in-line skates, play roller skating rink in the kitchen (which is hardly what we would call spacious), all the while JUMPING repeatedly (though impressive, quite irksome when Mommybear is trying to suppress an impending migraine), and "crashing" herself into the lower cabinets as she zooms along?

Oh - I forgot. Add the following to this scenario: She's been doing this for the past 20 or so minutes, all the while adding her notorious TV talk and endless stream of yellswhinesscreamsyellsyipeeswhoaswhines. *I will not scream, I will not scream, I will not scream....*

My choices?
1) Give in and scream.
2) Rip the skates off her feet myself.
3) Take my anger out on the real root of this problem: The Huz - who gave her the skates in the FIRST place!

............I'm so glad writing soothes me.
...and that my laptop was here.

Sorry *pout*. Just one of those darn days - err, nights.

Ashes to ashes, dust to BUST!

Aaahhh...Ash Wednesday - the beginning of the Catholic community's Lenten season. It marks a period of selfless sacrifice (*sob* Do I REALLY have to give up my coffee? How about I give up Oreo cookies instead? You haven't had an Oreo since you were in the 5th grade! That's not selfless enough!), courageous fasting (must....ignore...smell...of...juicy...burger...), and -of course - the humbling ceremonial rite in which the ashes are placed on our eager foreheads.

Or, in NBear's case - NOT SO eager.

I don't want STAMP on forehead! No Mommy! No daddy! No stamp on forehead anymore! NO!
[That was BEFORE the ashes]

I want take off! *sobbing* No STAMP on forehead! Noooooo! *sob* I want take off!
[...and, after.]

Yup. Need I also mention that the second she was face-to-face with Father Dan and he was ready to place his blackened finger on her face, she (very politely) said "No thank you, sir!" I didn't get a chance to see his reaction, though - but the sigh the Huz let out behind me (we sandwich the kids whenever we have to line up for anything. Great strategy to prevent runaways) was enough to convince me that Father was probably NOT impressed.

Hey - at least she followed directions and didn't rub it off when the Huz told her not to. PLUS, she allowed me a rare photo-op, despite the teary evidence.

Of course, the smile didn't last very long so MBear compensated. (Who else? She looked at the ebony smear like it was the Hope Diamond in tattoo form!)

Well, at least our first-time ash-ee was all smiles!

Whaaaa...???

*photo - NBear with Kimo in Guam, September 2008*

She LOVES animals!

Can everyone see this?

Yup - I'm a facebook fan...atic, but I happened upon this "Cure Autism Cause" page thru (through) a cousin's invitation.

I didn't realize there was a whole community out there of people who did NOT think ASD conditions should be cured! I feel like I've discovered a lost civilization of sorts:

Two reasons why this cause is horrible.

Post #1
1. There is nothing wrong with being autistic. 2. The most talented and intellectual people on earth are on the autistic spectrum. p.s. A group for awareness and advocacy would be great. Curing it is not the answer.


Post #2
i agree

Post #3
Wow I never saw it that way!! That is so true! My brother has a child whom is autistic....

Post #4
I agree it should not be 'cured'. Recent research has discovered that those with autistic spectrum disorders actually have more highly developed brain columns and have faster firing neurons than a 'normal' brain. Similar to Savants, ASD appears to over-ride primal instincts and the brain begins to work more like a computer. Children with ASD are highly intelligent - they just need more help with being able to express their thoughts as they can apprear random, when they just need channelling.

Post #5
Not to mention that autistic people have just as much of potential to be happy as anyone else. The people complaining are the family members who consider their autistic sons/daughters or siblings a "burden." Someone with cancer or aids would be more than happy to have a cure, but would an autistic person really want to change who they are?


Post #6
no they wouldn't - if you went to China, you'd learn to communicate in Chinese, France, you learn French - how about the so called "normies" learn to communicate autistically, and learn to develop their other senses other than just flap their gums a while....how many english speaking people use the language, and don't understand what they are saying in the first place!!! LOLhave the potential to be happy - they exceed most people with their daily gratitude in the first place... my 21 yo daughter says she has no desire to change because she doesn't know how to be anything but autistic....who has the problem here???

Post #7
Okay my autistic son is gifted, very bright, yadda, yadda. However, I have friends with AS children who are severe/profound in their disabilities - and they want a CURE.There are two sides of every argument.


Post #8
My son is PDD NOS, he behaves 'normally' in most things, now, after getting him much Occupational and Speech Therapy. But when his allergies flare up, his brain doesn't work the same and his PDD NOS becomes very obvious and the typical behaviors are present. When you get a 'cure' it doesn't mean it has to go away. I want the research to provide a better understanding of what happens, so when the communication breaks don't happen. The fits and inconsolable moments are rare. Let them flourish without some of the negative aspects that are associated with it.My son is not a burden.

Post #9
Okay, if you don't want to "cure" autism-spectrum, how about reaching a level of knowledge where it's possible for autism-spectrum kids to have what we laughingly call "normal" lives, including the ability to form friendships and interact with other people on both one's own and the other person's level? And the ability to deal with changes without having a meltdown?--Phil, parent of an Asperger's Disorder suffer-er

Post #10
I am a behavioral therapist who works with ASD kids, those of you who think that a cure is a bad thing have obviously never been close to someone who is so severly imparied by this disorder that they can not communicate to you when they are feeling hungry, sad or sick.

...but, to be quite frank - I don't GET these people (the ones who are anti-cure)!

Not.At.All.

What I wouldn't do to make my princess better. :)

Thanks, RMS!

Childhood friend and NBear-godparent RMS sent me this short but sweet (and significant) link:

I little more light was added to the end of MY tunnel, I tell ya....


*Hope they win! crossing fingers like crazy!*