Cracking the Code!

Dear Family and Friends

We are jubilant that together -- Mum and we  -- have found a way for her to communicate words and phrases.

Inspired by the moving story of Jean-Dominique Baub in THE DIVING BELL AND THE BUTTERFLY, we provided Mum with a verbal and written listing of the alphabet consisting of the letters reordered in accordance with their frequency in the English language.  Here they are: 

etaoin

srhldc

umfpg

wybvkxjqz

Through head nods, Mum spells out the letters of the words and phrases she wants to communicate.

Once we explained how the system worked, Mum's first word came in under a minute.  We quickly graduated to Mum wanting to do phrases, but the only thing in this process that is quick is Mum's ability to scan the letters.  Her helpers need to keep up with her.   Not an easy task!  Mum does amazingly well at keeping two files open at once -- remembering where she is in the word she is spelling while searching for the next letter on the board or through her listening. 

Mum has always been a wizard with words -- in verbal conversation and in the thousands of letters that she has written in her lifetime. That skill coupled with years of teaching children to read and write means that she is a natural with this process.

The nurses and therapists have found ways to understand Mum's basic physical needs, but Mum can now express some of her emotional needs.  This is a different level of communication. It is still tediously slow and it very very tiring for Mum.  HOWEVER, she can provide us with discussion topics of her choice so we can continue with YES and NO questions.

We enter this Thanksgiving time knowing we have entered a new chapter in Mum's ability to communicate.

We continue to search for a Speech and Language Pathologist who can "meet Mum where she is at" -- far beyond the basic communication boards that an acute care hospital provides.  Mum is gifted with words and wit whirling about in her mind and heart,  and waiting to be expressed.

With this posting, comes our recommendation for the fine book (recently made into a movie)  that inspired us to try this method with Mum.  THE DIVING BELL AND THE BUTTERFLY is the memoir of a 43 year old French magazine editor who experienced a massive stroke.  He could move his head a little, and blink his left eyelid. Through the system described above, he dictated an entire book with the flick of his eyelid.

Mum has much more movement than the flick of an eyelid.  Each week her muscles are very very slowly increasing in strength.  She is sitting and standing with help and does her exercises hour after hour in bed.  She can shake her head vigourously (and thus can once again give 'orders' to her daughters which she indicates is very satisfying!).  Mum also communicates some emotions through eye movements.  We see very slow change -- but it is positive, and that gives us all hope. 

May it be so for you --  our loyal readers and Mum's fans!

Nancy, Janet, and Catherine