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.
Autism is not a dead-end diagnosis. It is the beginning of a journey into faith, hope, love, and recovery. -- Jerry J. Kartzinel, MD, FAAP
Sunday, March 29, 2009
Sunday, March 22, 2009
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!
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!
Monday, March 16, 2009
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.
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.
Saturday, March 7, 2009
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.
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.
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