Thursday, July 10, 2008

Experience With Apraxia

Welcome:
I said to a dear heart, just the other day, while I was in the midst of having one of my royal tantrums. That I was going to quit blogging, but I'm not a young spoiled prince anymore, I should have known better. I am the friggin King! and I can never retire as long as my people are in need. At least my royal blog mother Caren, will come and poke me with a ten foot pole, every now and then. As far as I know, I'm her only bastar...er, bad-actor child.
Ahh, to be, or not to be.
I seem odd, only because I chose to write odd things, I like to set the pace, not follow it. I never was a writer, but this much I can tell you.
The moment a writer begins a story, all the universe is his. He becomes a god unto himself, and all creation flows from is pen. A sovereign without limitations, except in the writers own imagination. All things are possible to those that dare! Be bold, be brave, and keep an open heart. My brothers and sisters; there is no one quite like me, and there is no one quite like you! Strive to be humble with others, but believe in the uniqueness of yourself, always.


"Many kids with apraxia benefit from a gluten free diet, although Angle did not. Also, many kids benefit from the omega-3 oils, like Pro-EFA, which is available through Nordic Naturals. It comes in capsule form, which some kids will chew on to get the oil out, although you can just as easily puncture the capsule and add the oil to something like applesauce. It also comes in a liquid form. Neither of these have any soy or gluten products in them that I can see. They have fish oil, borage oil (which is important), lemon flavor, d-alpha tocopherol (vitamin E) and rosemary. It's not the vitamin E that's the most important component, it's the fish oil and borage oil." Miracles in Communication

"Dr. Agin is the foremost authority on apraxia in the country right now. She has a book out called "The Late Talker." If they don't have this book, they need to buy it. She's located in NY. Angel's doctor, Dr. Laveman, is a colleague of Dr. Agin and is the co-medical director with her of the Cherab organization -"

www.cherab.org

She should check out that site and read every single piece of info there. Another good site is:

www.apraxia-kids.org

"It is absolutely imperative that they see a neurodevelopmental pediatrician who has specific knowledge and experience with apraxia. Children are often misdiagnosed as mentally retarded or autistic when they're really apraxic. It's also imperative that this woman learn every last detail of the disability. I always joke that I'm the Rain Man of apraxia info, but as a parent, it is my responsibility to be armed with every single piece of information available to me in order to best advocate for my child. It is absolutely the most important thing you can do. And you have to be a strong, vocal advocate for your child, especially in the school system. Don't just accept what they tell you. You have to arm your self with as much knowledge about what your child is entitled to by law as you can. our district tried to tell me that Angel didn't need speech 5 times a week, that 2 or 3 was sufficient. Nope, sorry. They did this because the therapist in her building is part time and couldn't fit in 5 sessions. Too bad. Now they have to pay for a therapist to come to the house twice a week so that she gets all 5 sessions."

"The most important thing a parent can do is learn every last detail about the disability and all of its ramifications. Then take that knowledge and be a strong, vocal advocate for your child. Will people like that? No. But unless you are the squeaky wheel, your child will get no grease. It's not about whether they like me or not. It's about making sure my child gets every tool available to help her be able to lead a relatively normal life in the future. She can't do that for herself right now, so it's up to me."

Hope this helps,

~S~

6 comments:

NJWT said...

Isn't Apraxia the name of a Santana Album?

Walt said...

Abraxas! Mr.Smarty, it maybe old but it still rocks! Apraxia is a heart breaking condition, that test the souls of every parent it touches.

RainforestRobin said...

What a wonderfully vibrant and exhilarating post!...scrap the post. What a wonderfully vibrant and exhilarating SOUL!

I LOVE your words:

"All things are possible to those that dare! Be bold, be brave, and keep an open heart. My brothers and sisters; there is no one quite like me, and there is no one quite like you! Strive to be humble with others, but believe in the uniqueness of yourself, always."

ABSOLUTELY!!! Amen! Awoman!!! :) You rock! Go for it...all out...full on! LOL :) :) YES YES YES!!

Walt said...

Folks, I'm not accustomed to getting such ingratiating accolades, as dripping with this much sweet honey and ambrosia, except from Sky, and Sarah. Oh Robin, I first thought you were just pulling my chain, until I remembered who Rainforest Robin was. Now I am too flattered for words. What I said did come from the heart. But I was only echoing the words of other wise men and women, who have been my revered mentors over the years.
Robin, is the kind of girl you could spend a lifetime with, and never be bored.

Jersey Girl said...

I know that Dave was just trying to lighten the mood, as it were. But this is a subject about which I can find no humor.

I watch my beautiful, loving, funny, sweet, caring daughter struggle to form even the simplest of words. I watch the effort on her face, the fear in her eyes that she'll get it wrong and the pain she experiences when it doesn't come out the way she wants it to. Children with apraxia are trapped in their own bodies. She knows what she wants to say. She understands everything that is said to her. But she can't make her mouth say what's in her head, and in her heart. My heart breaks for her, yet I can't show that in front of her.

As a parent, it is torture to know that your child will probably never lead a "normal" life. I know what's in store for her as she gets older. She doesn't. The saddest thing on earth for me is anticipating the day when she realizes it as well.

Walt said...

Girl, Dave has a good heart, and has a great compassion to help others in need. If we had more people like Dave, there would be less suffering in the world. And maybe more bad jokes too. But I do understand how you feel, as a care taker, myself.