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Tuesday, December 16, 2014

Journey Through the Senses...



Elisabeth was diagnosed with ACC/CP/SQ/CVI.   Only through the retrospective of time we saw the long term benefits of  sensory stimulation during her infancy to wake up her brain.  It all began after her evaluation at the Center for Children with Developmental Disabilities (CCDD) through Children's Hospital. We were told early on our infant would experience multiple handicaps and severe mental retardation.  Her delays would be life-long in gross, fine, speech, cognitive, and motor development caused by extensive brain malfunctions compounded by ACC (Agenesis of the Corpus Callosum) and birth trauma which we learned later after deciphering causes for cortical visual impairments.

Fortunately, we found a way to connect to Elisabeth early on.  By exposing her to sensory stimulation and experiences, we hoped to jump start her brain  at a recommendation of three specialists, Ann Ruthnaswamy Richards, Gina Carroll, and Sonya Oppenheimer. They all worked collaboratively through their respective organizations (Children Hospital of Cincinnati and Cincinnati Association for the Blind) and told us Elisabeth was going to get very spastic around 3 or 4.

 They encouraged us to use this time in her early development to take advantage of waking up the sensory/muscles/cognitive/motor/communication functions in her brain by providing sensory stimulation to help her  communicate with us.  They said it would create a "memory" for her and open up new pathways in the brain.  Example, flashlights on the ceiling to aid in her visual tracking (visual), pompoms to brush/stimulate her fingertips (touch), scents to stimulate olfactory (smell), coated Q-tips to roll on her tongue (taste), recorded sounds (auditory) etc.


Ann Ruthnaswamy Richards, Director for the Parent Infant Nurturing Group (PING)  suggested we make a sensory board out of plywood and 2x4s to interact with Elisabeth rolling or positioning her gently. Moving things on the plywood resonated through her body increasing her sensory awareness. Since Elisabeth had no head control, these exercises triggered a response in her. We would time how long she would try to use her head to see something. We were happy if it was only a few seconds. 

Actually Ann and Elisabeth's Dad invented the first "baby gym" using small PVC pipe overhead attaching it to the board. Gina Carroll, from the Cincinnati Association for the Blind,  introduced us to simple toys that encouraged "cause and effect" and "visual acuity." Sonya Oppenheimer, from the CCDD,   introduced us to communication buttons, homemade switch toys, and anything that would kickstart cognition development.

Basically, our family time centered around creating our own fun therapy sessions through the help of these three women. It allowed Elisabeth and her family  a two-way path to connect.  She was teaching us how to communicate with her and we were responding to her. We learned as a family through her responses, what direction we needed to go to continue her own personal development.

Over the years, Elisabeth started connecting to us "emotionally" responding in a way a baby responds. While her physical and cognition development is still behind, we think this therapy helped stimulate her own personal "emotional" development." What are some of the things you do to stimulate your child's personal cognitive, physical, emotional development ?

(re-published from earlier article.)

Sunday, December 14, 2014

The Writing on the Wall in Ohio is L'Arche Internationale



The writing is on the wall for our friends and families in Ohio.


The new "employment first" initiated by Ohio Governor Kasich, an Olmsted Act ruling from 1999, and changes in the mission of the Hamilton County Developmental Disabilities Services (formally MRDD) only value our family and friends if they are "employable" and can live without traditional specialized services.


What further compounds this is that funding for traditional specialized services that do not complty with Olmsted and "employment first" initiatives are losing funding from federal, state, and local level. So where will these people go when all the funding and support is gone?

In Hamilton County Ohio, you are only valued as a human being if you can work or do not require traditional specialized services.



We can do better  for this population of our family and friends.


L'ArcheUSA