Carver my best friend

Carver is the partner of my mom and he is my best friend. He is always there to help me and the best of all , he makes me laugh all the time. 

Carver took me to the drafts horses show, and we are visiting a very large horse. Horses like me, they love to sniff me all around. Carver was a little scared that the horse will bit me or my stroller. Hahahaha....!He is over prospective. 

Carver gives me all kinds of nickname, like : Little Rascal, Possum Girl,  Souriceau; who means little mousse in french, Plumpinette,who means little fat girl,  and sometime" Little Sausage " because he want me to put some weight on!!! Oh and the most funny thing is that he tries to make me use my hands and ask me to squeeze his nose, sometime he says that I  can give him a good yank of a squeeze..... 

Here I am at his cabin in the woods....as you can tell I am having so much fun. Thank you Carver for being in my life, I love you very much. 

Beauty With-In

                          Beauty with-in

"Beauty With-In " 22" x 23"  Mixed Media on Watercolor paper by Catherine Earle

Your best gift for Christmas

The best gift you can give to your daughter is love, but I am talking about awake LOVE. Awake love is when you see her has that precious being she is. When you are completely present with her and who she is, right now. Observe all of her movements, from the smallest to the biggest. She is alive and full of her light.

• Quiet around  her your busy mind and listen to her breath...
• Watch any of her small movements in wonder...who told you she did not move? Observe her eyes moving, her eyebrow, her nose, her mouth, her tongue, her hands and each little fingers, her neck, her belly, her toes...
• Watch for her biggest movements, legs, arms, trunk, head...but... she is moving so much.
• Now that she know that you are observing her with all of your attention...she is going to move even more. 
• Talk to her, tell her how good she is doing, and especially for all of those movements..." I saw you moving your eyelashes, and now you are moving your mouth...oh you are smiling...." 
• Praise her for everything she do, " you are so smart.....how can you turn that way...I want to try too..."
• More praise...and more love.
• Tell her that you are going to make an effort about listening to her with all of your true attention, with true love.

Awake love is like the first time you discover something new, the first time you kiss, the first time you see your baby...in those new experiences you felt awake with all your senses presents. Your being felt full of light  tickling you from head to toes, so powerful you felt and everyone around you too. 

This is the best gift you can give to your daughter ( and others), discover her new everyday, be present in love and wonder, as much as you can, remember yourself  that you can give and you will receive. 

                                                                

Season of the Red

Happy Holidays to you all, with love from Alexandra and family.

Out and about

Today Alexandra has a lot of her breath holding...and in those days the apraxia is clearly in her way of focusing and doing. On Saturday we took her to a pet store. The pictures proved that she was trying to look at the animals, and was interested, but this what not obvious to us at the store. Alexandra was having a lot of breath holding, with hands very agitated in her mouth , she seems to us that she was not able to pay that much attention. I am glad we took some time to let her explore and be able to glance at the animal, I realize again that we have to give them much time to themselves, without cuing them who will create more apraxia symptoms, for the Rett girls to be able to observe, explore and retain information's. 

Between these two picture we can grasp the difference, hands in mouth, no control of the eyes and movement of the body and face, next able to focus, looking directly at the fish, she is able to take in what she see. 

It is my birthday

I am twelve today! My mom made a french log and a delicious dinner. Carver, Gabrielle and my grandpa Dan and Jackie were present for the event. I was so happy to see everyone just here for me. I got a lots of cards, telling me how special I am.... Carver says :" The Worlds' most perfect little girl..." Gabrielle "'That I am a wonderful sister , and that she love me very, very much..." my dad :  " That I am a treasure and a light in his life..." 

Thank you everyone, I love U too..

My little dog Chico

This is my little dog Chico. He is a handful little beast, who loves to play tricks. Every morning he seats next to my bed and asks to come up. Then he climbs into my bed, next to my head to say  hello and smells my cushion. I like it, he puts his head really close to me and I can feel him.....isn't he cute? He loves children, he is a kid himself. When I come back from school, he is always there, greeting me and my caregiver, bringing his ball, and asking to play. He loves giving a loud bark for one of us to thrown his ball...silly dog. He is a mix of Dachshund and Chihuahua, he will be five years old in February. The picture was taken early morning 6:15 am, before I get ready for school....

My eye gaze computer

My eye gaze from Dynavox is attached to my wheelchair...thank you to technology progress. As you can see , I like it and it makes me happy. I am playing with a game call " Zoo adventure". A bunch of wild animals , like you can see in a zoo, are displayed on a scene. Each time I look for a second and half on one it disappear from the scene, and a voice come out giving me some insight on this particular animal. I am able to make them all disappear now...Yeah! 

See me concentrating, I am looking at one right now. I only play for 15 minutes, that's enough for me. My mom want to keep me happy with the process, letting me get acclimated to the computer and his challenges. I am doing well, especially when I look at those pictures, it is obvious to see that I am engaged and able to succeed. 

In this picture , you can see the animal on the screen that I am looking at. If look at the seal, long enough, a red square light up the area, than it disappear. A voice come out," A seal is an animal....."

The attachment to my chair. It is very easy to put on and take out. The eye gaze works very well. My mom try to have me do it every day, she want consistency, but sometime it does not work with our schedule's. The important thing is to keep on trying. Wow....it is just amazing, I am learning to act on my own, and make thing happen, this is very new to me. 

A cold and sunny day

It is winter here in Idaho, but the sun is shinning today. So my mom bundle me up and we went for a long walk. The cold was feeling good on my face, because I didn't cry but show enjoyment of our escape. Chico our dog was with us, walking along and I was able to watch him from my well sited place. My mom took these pictures just before going, you see me happy and smiling, but in the next picture you can see me experiencing one of my breath holding. Not to good, it makes my head go back, my jaws get all tenses, I stop breathing, holding my inhalation breath, make some sounds, than 1 minute later get back to normal when I exhale. Not fun, because it happen non stop, every two or three breaths. It will stop eventually, it actually stopped on the walk, but this is very tiring to me, even if I am used to it. I think it use a lot of my energy, and it is hard to concentrate when I am like that. I wish that we can found something to stop this mechanical process in the near future, stereotype well know with the Rett girls ....

My family

I love my family. I am living at home in Sandpoint Idaho with my mom and sister Gabrielle. My dad lives in the San Francisco area. He just came for a week to visit and stay with us, I was very happy to see him. My dad  is a private counselor for family and young adult. He has study acting at the University of Santa Cruz and keep on pursuing his dream on the side of his work. My mom is a fine art artist who has study art at Ecole des Beaux in France. She create beautiful scenes where birds and nature meet each others in a fantastical imagery. I love art , it creates a wonderful visual interest to me. I am lucky enough to have paintings all others my room and the house to contemplate all day long. I am also interested at looking at art in books. My sister Gabrielle will turn fifteen in January. She is attending the high School of Sandpoint after having accomplished eight years in a Waldorf School. She love  to dance, she study drumming this year, she makes drawing with Sharpie pens and  she loves to meet with her friends. Next time I will show you my dog, he is the sweetest of all.