Collage and Art

This a collage that I did ( Catherine ) some years ago using a picture of Alexandra eye. The eyes  of our Rett girls are so specials... can't stop looking into them!

My bath time

For the last 11 years Alexandra had to go in the bathtub with someone in it. When she was young she  slipped and from that time on, was stiffing herself so much in the bath tub, shaking, making herself unstable and sliding in the tub....Last summer I had to leave her with a caregiver during a travel away. So we had no more choices, than having her sit and stay in the bath secure by herself.  I change the water temperature and made it to a perfect temperature for babies, not to hot , not to cold,. I add some toys, and hold her very gently talking to her when she was in the bath and she finally calmed down and was totally fine to sat by herself. I also add her favorites music when in the bathtub. She love her bath now, she move freely, laughing and enjoying her time. 

At some point, years ago , I was getting so concern with this issue, that I looked into a seat for bathtub ans special needs.. I didn't like them at all, and I am glad we didn't go that way. Barbro Linderg talk about how you have to reassure the girl in a fearful situation, creating a secure memory, especially helping with music or singing, and to try to figure out what exactly the girl is afraid off. The memory of the Rett girls work in a strange way, I believe now that we can change their memories of a event, by using tools who are good memories to her.  

My caregivers

I have three caregivers right now, Cindy, Janeen and Jennifer. They are so good to me. They come to my house after school for three hours to take care of my needs and Jennifer keeps me longer sometime during a week-end. . They play with me, read to me, take me out for a walk or a visit to the library...they are so much help to my family. Thank you caregivers, you are the best.
My mom had a hard time asking for help at the beginning ( when I was three), but now she know that she can't do it all by herself, and that i need a court of lady's around me at all time.

My Kids Rock wheelchair

I love my wheelchair made by KIDS-UP. It is called a Kids Rock, and I have the size 2. I got the chair 3 years ago. It is my first chair. My mom didn't think that I need a chair because I was so light that it was more easy to carry me around. Also I hold my back very well, I have been on the floor a lot, and  be in a chair was confining, I was so small that all wheelchairs looked huge and bulky....But I love my chair now, it tilt in space, and it is very comfortable. It work well for me, I take the school bus with it , the bus has a lift and necessary hooks, but in my mom van, she just have to fold one of the back seat and get the wheelchair in.
Voila, the middle pic show a umbrella , that my mom got online at http://www.activeforever.com/p-4935-paraplis-umbrella-holder-for-wheelchair.aspx . It 's work very well. The wheelchair site is at http://www.pridemobility.com/quantum/manualwheelchairs/kidsup.asp

My sister, her friend and I

My sister Gabrielle is on the left of the picture, I am the middle one and Ruby her best friend, is on the right. 

Gabrielle was coming back from a trip to California to visit our dad, I came with Ruby to surprise her at the airport. My sister is going to be fifteen in January and I will  be twelve in December...so soon!. Gabrielle has always been compassionate, loving and very patient with me, but we are  so different that we both behave like an only child. We do not interact that much together, it will maybe takes a life time to discover each other. The only time I protest to watch a movie is when Gabrielle choose one....I just can't stand it , the TV is kind of mine. ( I need to have some control over her somewhere..!)

Summer memory

The cold has just arrived in Idaho and I have to remind myself of those days, warm and beautiful .This picture of Alexandra in her stroller was taken by her grand-pa Dan .He took her and the stroller with the help of Jackie, to their cove on the lake Pend'Oreille for a experience in the water... Oh great memories!.How things change, I can't imagine putting my feet in the lake today!

Eye Gaze sample

Sample on the eye gaze from Dynavox . Alexandra got an eye gaze a month ago. I will show in a future post how its looks and how it is attached to her chair. When you open the computer, this is the first page you come up too. It is easy to use and I have add symbols on the ones she uses. Here is the Itsy Witsy spider song, cut in three sequences.

This is the button for the song. By looking with her eyes, Alexandra can direct her arrow,( like with a mouse), and after a short time of dwelling it will click and move to the next page or event.   

                                                                           # 1

 The page open to a scene. The beginning of the song start, than stop. Alexandra has to look at the yellow next button to make it go to the next action. She was not able to do it for a week during our trying time in May, but now can do it very well. 

                                  

                                                                             

                                                                          

                                                                              #2

Clouds come, the spider move , the song play, until Alexandra has to look again at the button .

                                                                                # 3

 It is the last section, the sun has dried the rain, it can be closed or play again. This game will teach cause and effects to Alexandra, I do not know how much she understand her doing, but she is able to do it and seems enough interested. ...

The book of experiences

Alexandra's book of experiences is made with a folder, sheet protectors and brochure paper on which I paste and copy pictures that I have on file in my computer. I have mentioned before that the book is made for her to keep her memories, and be able to share with others, like family, caregivers, friends.....I write a short story about the day, in the first person.

 It is not clear to me if she recognize herself and anything about the book...? But she is fine for us to read it to her. I would like to see herself  taking conscious of herself, her image,  creating memories of  places people and time .

Halloween

Evening of Halloween. Alexandra came back from school with a beautiful piece of art on the subject of the holiday. She has been showing great interest toward spider....Maybe her favorite animal !

But look at her, that evening she came down with a cold, I dressed her up and fed her, and she was miserable. Tired, winning she flopped on the table.....my little Bumblebee was ready to end the party now and went to bed. The Itsy spider crawling in her dreams......Good night.