Communicating

I am breaking my silence here on the blog with a post on Luisa's recent advances in communication.  I cannot tell you how many posts I have written in my head over the last few months - posts detailing life in our home, thoughts on faith amidst trials, musings on the life ever-growing and dancing within  - a baby girl now 29 weeks, anecdotes on the big kids - how I'm relishing in the summer hours spent snuggling their necks, and finally Luisa Ray - our famed warrior, our beautiful girl who has changed so much in the last few months.  Life interrupts my writing though as I nurse ear infections and rashes and end-of-year school, extra-curricular responsibliities.  Yet this morning I caught Luisa on video, communicating with her loaner augmentative device and I thought - Yes!  I must post this!!!  She has come so far, worked so hard.  It's time to celebrate!!  Turns out I have a lot to say on the subject of communication!  I will break this subject up into at least 2 posts.....

The most significant change in Luisa over the last year since her diagnosis (yes, we are coming on one year since her Rett Syndrome diagnosis!!!) is the loss of her speech.  At the time of diagnosis she was saying 12 words, including Mama, Bubba (brother), bunny, Bella, Daddy, Baby, "Per" (diaper), cup, "Ka" (cat), and puppy.  I wrote the words carefully down the day after we received the genetic test results.  Slowly over the last year, every word has disappeared.  Today, when we ask her to "talk" to us (usuallly asking her to use her augmentative communication computer) she looks at us sweetly and moves her mouth open and closed - as if trying to say "baby."  She is so earnest but not a sound comes out.  It is both sweet and heartbreaking.  "Mommy" was one of the last words to go, "daddy" was just learned when words started to disappear.  "Baby," seems to be her favorite word because she mouths it daily, opening and closing her mouth for the "b."  But again, no voice.  We call her our "baby," and she watches our mouths so intently as if willing herself to remember the complex movements of the words that pour so easily from our mouths.  I cannot give a specific date when we stopped hearing Luisa's words, they just disappeared like a mist.  

In typical Rett Syndrome fashion, in the last week we experienced a return of skills.  I'm not sure how long they will stay.  My heart hopes forever.  My head remains cautious.  During the last 10 days, Luisa has said "bye," two different times - once as the physical therapist left our house and once at a friend's birthday party.  She has said "mommy," three times, once when she was being held by her daddy.  She was upset and fussy while Tony tried to console her.  She looked over at me and said "mommy," in a sing song, forced voice.  The longing was there in her eyes and in her voice.  I cannot describe in words the giving to a child for months and months, never knowing how they receive, only to be given a glimpse of how much they need and desire you.  It is both exhilirating and poignant.  All those silent days?  She is calling mommy.  Her heart is as entertwined with mine as mine is with hers.  I swooped her up and she stopped her fussing.  She wanted "Mommy!"  And finally, she said "more."  This was funny because Tony and I were trying to be tough with her, teach her to use her augmentative communication device.  It was meal-time and she was screaming.  We knew she wanted more food but we were trying to encourage her to use her device.  "Luisa, if you want more you need to use your computer and tell us.  Screaming hurts our ears.  Look over here Luisa and tell us."  This was a bit of a stand-off, screaming and pleading until she looked right at our eyes and forced out a verbal "more!"  We laughed.  Well, o.k.  More it is!!! It's like she still believes she can talk.  All this computer stuff?  Well, no.  I want to tell you!

Soon after her "Rett Syndrome" diagnosis I began to push Luisa's therapists and teachers to move a new direction with her communcation goals, shifting away from sign language (complex hand use in a girl with Rett Syndrome? - not likely) and away from articulation / speech movement goals.  While I knew that I would continue to imitate and encourage speech movements, augmentative communcation needed to become our long-term goal.  Girls with Rett Syndrome lose their speech as Apraxia takes over.  They can no longer formulate the complex movements needed for speech sounds and as a result they go silent.  This is why many call girls with Rett Syndrome "silent angels."  Apraxia is also the culprit behind their inability or loss of ability to walk.

When I look back on how God prepared me for this journey in the special needs world, I cannot skip over the knowledge and experience I gained during my years as a speech therapist.  Although one never feels truly "prepared" for the challenges of a non-verbal child, I smile to think that God had Luisa in mind when I sat in my first speech pathology class at Baylor Univeristy, "Introduction to Communication Disorders." He had her in mind when I first sat down across from a Global Aphasic.  My favorite client in graduate school, this person touched my heart as we sat for hour long sessions looking through her communication notebook, trying to establish a basic way for her to communicate.  A victim of a nasty stroke, this kind person had no intelligible speech, no way to write.  I created a low-tech communication notebook for her, very similar to the one I would create thirteen years later for my daughter.  She loved to turn to the page of family pictures.  Her face lit up as she vocalized non-sense syllables while tapping the pictures with her finger.  Tap, tap, unintelligible sounds, smile at me, tap tap.  Yes, I see them.  I see your family.  They bring you joy!  God had Luisa in mind as I fell in love with the non-verbal kiddos at my first job in an Elementary School on the West side of San Antonio.  He had Luisa in mind when I worked with a young child on an augmentative device in private practice.  Side note - that young child's momma and I crossed paths recently and exchanged stories of all that has happened in the last few years.  That night I thanked The Lord in prayer for the plans he orchestrates ahead of time - how my world "before," merged with my world "after," so that I could see the same God was God of both.  

(Names withheld and details changed in the above stories to honor the wonderful people I worked with...)

(Outside our tiny, 550 square food apartment on my way to a day of graduate school classes and clients.)

In graduate school I took a semester long course in Augmentative Communication.  It was taught by the most feared professor in the department, Dr. Rivers.  One of the few male professors in our department, Dr. Rivers was known for his tough exams in the neurology and organic communication courses he taught.  It was never enough to memorize the information in his courses, you had to apply your knowledge to clinical diagnosis and practice.  I studied harder and learned more in his classes than any other.  A tall, large man with a white beard and stark white hair Dr. Rivers was quick to smile and laugh but still managed to intimidate every young person in his class.  No one knew what to expect from his Augmentative Communication course as it contained little anatomy and physiology, his specialties.  His approach to this course would prove to be quite non-traditional and a bit more touchy/feely than what we expected of our academic, feared leader.  Dr. Rivers forgoed a final exam for a final project and paper.  He asked each of his students to become non-verbal for 24 hours.  Our only form of communication would be a low-tech communication notebook we were to create ourselves.  This notebook contained basic words, phrases, and pictures that we were to use to communicate with those around us.  For example we had a picture for yes/no, like/not like, hunger/thirst, etc.  A basic page for spelling when pictures failed was also included.  Communication would involve the use of pointing to these pictures in our notebook, natural gestures, and facial expression.  Anticipating the end of semester exhaustion of his students, Dr. Rivers laid a few ground rules.  We were NOT to spend our 24 hours locked up in the library or our dorm rooms studying.  We were to go on at least one outing to a public place where we would be forced to communicate with a stranger, not a friend or fellow student.  We were to write a paper at the end of our 24 hours discussing our experiences as a non-verbal college student.  We were also to meet with him privately for an exit interview and discussion of the project.  Intimidating?  Just a tad.  I chose the mall for my public outing and my paper on the experience earned an A.  

(Graduation!  Who are these baby faced people?  And red hair!)

If offered a time machine, would I go back?  What would I say to that young, inexperienced opinionated 22 year old?  Maybe I would just stay silent.  I would observe her.  The experience of reflection more meaningful than imparting some kind of great wisdom.  Would I tell her that she would someday birth, love, and raise a disabled child?  I think not.  I think I would quietly wach that young girl and feel a deep, profound thankfulness for time and mystery and God's hidden hand in all things.  

(Headed out the door to Baylor University's Preschool Language Institute where I was a graduate clinician.)

I no longer actively practice speech therapy, although I keep my license current.  Someday I may go back but for now I will practice here at home with Luisa Ray and Baby Morlandt #4 and the big kiddos.  It's been a fun experience sitting in on all Luisa's Early Intervention Speech Therapy sessions and private speech therapy sessions.  Her therapists allow me to participate in the sessions quite a bit.  It is bonding for Luisa and me.  Honestly I think parent involvement makes her more successful.  Her personality SHINES during her speech therapy.  In just 3 short weeks we will have her high tech, eye gaze communication device in our hands.  A rolling mount, a table mount and loads of programming to accomplish.  No 24 hours in the non-verbal world then return to normalcy, a paper to complete.  No, a life-time of helping my girl find her voice.  A life-time of public outings and the education of the masses.  A life-time of stares then quick glances away.  Well, bring it on.  Maybe I won't write a paper about it this time.  Maybe I will write a book....

The next post will have video of Luisa using her device and an in-depth explanation of the device we are using...