I am determined

The past two weeks in many ways have flown by like a blur. I've been habit training Sadie to go on the potty and it has truly been a tiresome experience. We (I) have spent countless hours sitting, saying, repeating, "Sadie, go potty." I even went so far as to paint the bathroom at the beginning of the week, with the thought that if I'm going to be in here this much, I might as well do something. We immediately had pee pee success and I have really felt that with a schedule and a routine that Sadie will be able to be habit/time trained.
For those of you that have no-idea what "that" means, habit/time training essentially is training the caregiver to put the child on the potty at routine times or after routine habits. For instance, immediately upon waking, eating, napping, etc. or time training meaning every hour putting her on the potty. I'm getting all this knowledge from Toilet Training for Individuals with Autism and Related Disorders by Maria Wheller. Now for all of you that think WOW I didn't realize Sadie had advanced so much or understood that she could go on the potty. My response to you is once again, Sadie sometimes gets it and sometimes she just doesn't get it, and I'm reminded of that because she just pee-ed all over the couch, not because it was an accident, not because she has even an understanding that that was the wrong place to pee, but because SHE JUST WENT. She had to go, and so she did, without any bit of conceiving that she should have gone on the potty. Now, once again, don't get me wrong, just this morning I was sitting in the kitchen and out of the clear blue, I hear her tinkling on the potty all by herself. Yes, she walked her little butt right on in the bathroom, sat down, and pee-ed. But that is the enigma with Sadie, just when you think she gets it, she shows that she doesn't, and then she shows that she does again. AND, that is why potty training, this habit/time training is going to be, without a doubt, an ongoing process and possibly be months in the making of forming the habit. They say something like 7-12 times make a habit (someone better fact check me on that), but that it takes hundreds of times for a child with an intellectual disability to learn something too (fact check that too). And so with that said, we are on at the end of our 15th day of naked habit/time potty training and I'm not about to stop now. We are going to push through this and we are going to do it, I don't care if it takes 1 year or 5 years.
I am determined.

Eating

Imagining there are people starving in the world ...Sadie has virtually every opportunity to eat always. Yet, she could truly care less about eating...WTH
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Washington Post

We are in tomorrow's Washington Post. Our photos are online now... http://www.washingtonpost.com/wp-dyn/content/article/2010/07/21/AR2010072102651.html?sub=AR
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85% divorce rate

http://supportforspecialneeds.com/2010/07/21/eighty-five/ by my favorite blogger Robbert Rummel-Hudson, Schyuler's Dad
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Microarray SNP results

Hello everyone! Sadie had the Microarray SNP test and a CBC blood test. We found out today that she is anemic and will be taking iron supplements. The SNP test showed that her new karotype is deletion 8p23.2 extra xp 22.13 to the terminal deletion. In short, she is missing more chromo 8 than we originally thought an...d she has a larger band of extra xp than we previously thought too. What does all this really mean....???? Not to much, nothing has really changed....I wish I could say differently, but Sadie is Sadie and she will continue to show us her path.

a disgusting topic, still funny none the less

While I haven't posted too much in the past few weeks, I found it funny to just go ahead and post this quasi-milestone....Sadie has been getting a complete giggle out of farting. There I said it. When the moment hits her, she will look dead at me, fart, then just so big and proud, she smiles, and follows that up with one of her classic squealing giggles.


With that tidbit of information out there in the universe, I can fill you in on the past few weeks and how summer is going around here.


I honestly haven't felt like writing much because of my new dilemma with making sure I paint a real picture of life around her/here. I struggle to stay strong. I try super hard to keep all emotions about the disappointments about Sadie hidden even from myself. When I feel those tingles of pain ripple through my soul, I quickly tell myself to pull it together. I remind myself of all the wonder and gratitude she has brought to my life. No matter how hard I try to squelch those feelings, they pop in and out weekly and on occasion, daily. I can compare it in a sense to the same feeling when you see one of your children nearly fall, that outer tingle on your skin as you reach out to catch them. But this is different this is the inner tingle, the inner fear that no matter what I do, I CAN'T FIX HER. It's the tingle inside that makes your eyes well up with tears and you are a breath away from pulling it together or finding a moment to cry.

And so I wrote that hours ago, in fact it was this morning, but still to reread it before posting, I wouldn't change a word.

On another note, the summer seems a third over and we have been going to the beach, water park, hanging in our back yard, and of course watching A LOT of Disney's Princess and the Frog. Sadie's attendants have made it possible for all the fun outside these four walls and I'm grateful to live in a country that offers services to her. I don't feel paralyzed to the enormous amount of energy it takes to get both girls out the front door, especially Sadie who still requires 100% help to dress, potty, eat, etc.

Both girls did have random fevers last week that lasted about 48 hours and both recovered without major incident.

Overall, we are having a wonderful summer.

Dear Universe

Thank you for the bizarre coincidences in the past couple of days....they are really getting me thinking. Although some say there are no such things as coincidences.....hmmmmm
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