Understanding Rett Syndrome

Understanding Rett Syndrome By Barbro Lindberg, is a book I highly recommend. Constantly looking at improving and understanding Alexandra syndrome I read this book this year. Barbro from Sweden, is not a mother of a Rett Syndrome daughter, but a teacher who got interested by those little girls and went on study 39 cases. She understand them like a mother or a father will do, knowing every manifestations of their syndrome. I learn so much from her words. We all can see and feel that our daughters undersatnd a lot, but in the same time, respond so little to even simple directions.... Barbo made me understand how Alexandra was perceiving the world, and how her system was functioning. I wish I will have read this book years ago...to be able to understand her better. Thank you so much to Barbo, I am now much more ready to work from a very different point with my dear Alexandra. 

http://www.amazon.com/Understanding-Rett-Syndrome-Practical-Therapists/dp/088937306X/ref=trdrt_tipp_dp_img_GWTB_507846?pf_rd_p=1323201482&pf_rd_s=right-4&pf_rd_t=101&pf_rd_i=507846&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=18Q8HNM8QK0CZ9338GX2

Halloween craft

On Saturday we went to the Cedar Bridge where a craft day was arranged. I was ready to sleep when we arrived, a young woman was singing, children were dressed up with costumes and I was dossing away....
My mom start to paint a pumpkin anyway, she thought that I will watch from the corner of my eyes.
When I saw the eyes, the mouth and a face taking form, I got all interested and even help by reaching out, making her eyes much more Halloween like than what my mom was setting for.Don't you think?  I had fun.

Mood switch ...

Every parents of a Rett syndrome girl know how much their mood can switch in a second. Moods of pain, stress , fear can be replaced by smile and laughs in a blink.Sometime a word, a song will allow the magic to happen. Rett girls are not  always happy, or not always moody...!

Car ride and nature.

Dressing up!

It is not Halloween yet, but I love to dress-up. It is one of my activities. My mom  has created a basket full of masks, fairies wings, glasses, crown and costumes... I think that I am going to be a Bumblebee next Monday....BbbzzZZZ..... 

Communication Symbols

#1

#2

# 3

Sample of Alexandra's symbols. Alexandra is eleven now, I am just beginning to understand her a little more,  and she just began showing interests on communicating. I ask her school to make this board makers symbols and we have decide together on  the text who should go with each symbols. I wanted a simple text who will  always be the same, at school and at home. I wanted the sentence to be clear, without an interrogation( for the apraxia) and that she can learn to make a connection between the image and the sentence. 

This is a example :  #1 Alexandra it is time to go to the Library! 

                              #2 Alexandra it is time to read a book.

                             # 3 You can choose Good Friends or you can choose Thumbelina 

                             Look at the one you want to read then look at me.

                             You looked at Thumbelina, then me

                             I think you want Thumbelina. 

 I read the book...  

I use others symbols the same way, they measure 4.5 x 4.5, I have attached them with two rings, they are easy to take around, and to install standing up . The text is on the back of the next card , this way when fold she only see the image and I can read the text. The images can't be mixed up. I will share more of the symbols I and Alexandra  use. Hope you understand me. Until later. Have a great day. Catherine 

                            

Alexandra beautiful grace...

 

Praising the flow

 The wise person praises the universal flow of creation. Instead of finding fault with why things are not going the way one chooses, the truth seeker will refine the abilities needed to find the natural flow, and then go with it. 

                                                                      By Jamie Sams

My little bus

Pam my bus driver and Renee are waiting for me every morning with their biggest and kind smile. My mom always remind me how lucky I am to get such a service. In France for example it will not be the same...a taxi will come to the house, and let me tell you,  it will not be so much fun...In France I will not be able to go to the public school. So yes I appreciate, this is so special. I am grateful to my country and wish for others places in the world to get the same great services.Thank you.

Summer activities

                                                             

                                                   

 My mom has finally created My Book of Experiences. It is a book made somehow like a photo album, but just with pictures of my concerns. The montage is made through the computer, where she is able to add easily a text and copy many pictures on the same page. It is made to help myself  remember events, time and places or people...and to share with others for them to know me better.... 

Sandpoint Idaho

I live in Sandpoint Idaho, it is a beautiful place.View from the Third Pier one block  from our house.

I am

I am Alexandra or another Rett. To this date I am 11 years old. My mom Catherine is writing and talking for me , because I do not talk, do not walk, do not use my hands...oh except to suck on my fingers...you know like another Rett.
This blog is going to be about me and all the great stuffs my mom is discovering along the way.
Excuse Catherine( my mom) English, she is native from France and will makes a tone of mistakes with her writing . Hope you readers, can get use to her Franc/Anglais....! I myself love the sound of the French and of her funny English.....
Will share more very soon.