Take another shot of courage
Wonder why the right words never come
~The Eagles
So we’re back. And everyone I run into asks the same question. How was it? Did you learn anything at Koegel?
Before I answer, I feel the need to qualify a bit. The Koegel Autism Center conducts parent training workshops for families utilizing a method of ABA called Pivotal Response Training (PRT.) PRT is an empowering mechanism for families, mainly because it trains them to capture teachable moments in a natural environment. (Think FUN ABA…) And we all know generalization of skills is the ultimate goal.
I’ve personally witnessed more than one child with autism strongly improve utilizing this method. One little boy who started intervention at the same time Jack did, responded so well that his family moved across the state and enrolled him in a typical preschool …. and never disclosed his previous autism diagnosis.
So for them, it proved to be the magic bullet.
For us, not so much.
I was first trained in PRT a couple of years ago and we’ve been utilizing it at home ever since. I signed our family up for the workshop in California, hoping there was something we might be missing. Maybe Andy needed to sit through the training too? Maybe we were doing it wrong?
Turns out we really weren’t. The staff was wonderful, supportive, and confirmed that we are doing a great job with PRT at home.
An A+ performance.
But Jack still isn’t really talking.
And the name of the workshop we attended is First Words …
And they tell you in this workshop, for best outcomes, the ultimate goal is to get your kid talking by the time they turn five.
Five.
Tick-tock, tick-tock…
Come September, unless Jack begins to converse,
we’re screwed…
And that, my friends, is a tough deadline to swallow.
I attempted to swallow while I sat across the table at Chili’s, sipping my second margarita and assessing the situation with Superdad Andy. (It was the evening following the first day of the workshop in California and we were both way, way, way down.) The realization that we were really doing all we could do, and it wasn’t bringing about the normal results, hit us both hard. My hot tears bounced off the mosaic tiles as I looked at Andy and said it. That thing you just shouldn't say ...
“He’s never going to talk, is he?”
It’s like, all of the sudden, we both just knew. Realization seeped in.
But I suppose clarity helps you focus. Brings about perspective.
And clarity reminds me that the one thing I do know for sure is that, above all, we’re still a happy family. Life and love really is about so much more than words.
It’s about smiling at each other in the rear-view mirror while driving down the street.
It’s about a warm little hand, reaching out for mine.
It’s about a sweet-brown head on my shoulder.
It’s about pure joy, chasing each other down the beach until your lungs burn and your face hurts from smiling.
Those are the moments that keep us going.
Be I've got to honest. It would help to have more….
Words, that is…
Deadlines and realities aren’t quite enough for me.
I’m not giving up just yet.
Next?
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11 comments:
the deadlines are artificial (and utter bullsh!t, if you ask me) .. your love for your son is real.
the 'realities' are perception .. which is ever changing. look from a different angle and 'reality' looks different.
only the truth remains. but what is the truth?
it is yet to be seen, my friend. yet to be seen.
we all have our moments. we all get down. we all wonder if there's any point in all the effort.
but we -you- are strong. you will keep fighting. you will keep pushing. you will keep learning.
you will keep LOVING that beautiful boy of yours.
and we will all keep hoping.
together.
Yes, you are a happy family with lots of strength and lots of love. I remember the day The Prince was diagnosed the neurologist said, "get busy, you can do the most good before age 6" and others have been told that too. But deadlines are artificial. I have one friend whose son just started really talking this year, at age 6. Another who only began making sounds and just started labeling at age 7.
And, another who is non-verbal, but started using a keyboard to communicate at age 10.
I know it's easy for me to say, the Prince didn't really start talking in any real way until age 4, but once he started, he took off and I know we are lucky and blessed.
And I still feel your pain. But don't give up yet, if this is not the right technique, maybe another one will be. It is communication, not necessarily words, that is important, but easy for me to say, I know.
And your son communicates so much with his beautiful smile and the laugh that you love. And he will learn to communicate more too.
You are doing a great job. Just remember, "Ain't no mountain high enough!'
Lots of love and hugs,
Katherine
I feel your pain even though Devin is just about to turn 3 still not alot of words. Just a few. I can tell how frustrated he is by his inability to communicate. My biggest fear is your biggest fear. That the "real words" won't come but every morning I tell myself they will come when he is ready and not before. So frustrating especially when you talk to parents of a "typical" child and they say Oh he/she won't stop talking today. Such a smack I'd like to give those people. Anyway, we're rooting for you!
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Many children are slow learning to talk because of:
* auditory problems (because they don't hear what others assume they hear - they may only hear the beginning and end of a sentence & lose the bits in between)
* processing problems (they hear but cannot process the words clearly)
Both these may respond to auditory integration (AIT) or similar treatments
Your son might also have exposure anxiety (in which case a keyboard or lightwriter might help.
Cheers
Stella
www.positiveapproaches2asd.com
I agree with the others - the deadlines and even the labels, really, are artificial boundaries. Sure, they are well-intentioned best guesses, but they have no real impact on Jack's personal outcome -- that's his (and yours) to discover at his own pace. And if he doesn't talk, then he will communicate in other ways.
You are so strong. My thoughts are with you.
hi my friend, you know i feel you completely on this one. our kids are the same age, and Rhema's nonverbal and i've been dreading the big 5. it can be so painful to do all that we've done - AIT, Tomatis, speech therapy week after week, etc. and still no words. but you and i are cut from the same cloth - we WILL keep hoping and fighting and believing and loving even though it hurts. sending a hug your way...
The Speech Maker: http://rhemashope.wordpress.com/2008/07/03/the-speech-maker/
That and the 'window.'! Maybe we need to recalibrate the internal compass?
If you have a free mo, pop on over and collect your award [Saturday]
Best wishes
You know, I get such encouragement from all of you. This blogging thing is really therapeutic!
I really try to keep it honest, although sometimes it sounds very whiney, doesn't it? I hope that it helps you all realize you're not alone in feelings like this...
Here's to the future, better communiation, and more good days than bad.
Thank you my virtual friends...
the day i hear you sounding whiney, i promise to tell you. this ain't it, honey. xo
My son is 14 and doesn't talk...I remember when at some point I looked into the earnest eyes of his newest language therapist as she assured me that SHE would be able to get him talking...and I suddenly realized, with utter desperate clarity, that unfortunately this was NOT going to happen...all earnestness and goodwill aside. It's OK, really. If your son talks, or doesn't talk, it'll be OK. And still keep one inner eye alert for miracles!
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