"And So It Goes and It Goes"

My latest find..anthem for autism :

http://m.youtube.com/watch?v=s1zZt4jHvnk

http://m.youtube.com/watch?v=1hiQYurSJCQ

http://www.faith.com/video/A-Special-Needs-Mother-Celebrates-Her-Childs-Life/http://www.faith.com/video/A-Special-Needs-Mother-Celebrates-Her-Childs-Life/

The Universe is conspiring to help me.

ndependent
Options, Inc.

Providing residential, day service, independent
& supported living, and foster & adult family
supports to people with developmental disabilities.

Residential Services

Day Services Programs

http://independentoptions.org/










Today, I was assigned to a patient who is a home health nurse in a community (group) home for adults with intellectual disabilities.  Between giving her medications and assessments, we chatted about the nature of her work and what a community\intermediate care facility for ID (intellectually disabled) adults is like.  She gave me much information about how the homes work and introduced me to her company called Independant Options, Inc (independantoptions.org) that serves the Orange and San Diego counties. This company operates a group of homes with about 6 residents each all over Southern California and holds yearly picnics with over 400 attendees from all group homes.  I would love to attend the next one and observe how happy (or not) the residents seem.  She  also stated that if anyone is interested in opening their own community care home, her company can help acquire funds to refurbish\lease a house through state and federal entities.  The state matches federal funds but with the new healthcare reform, she is uncertain what the future holds.

The need for smaller homes came about with the shut down of a big facility in Pomona which at one point housed approximately 500 residents.  I like the smaller home idea better.  Of course, the quality of care rests completely on how compassionate the caregivers are.  Unfortunately, these positions, according to this nurse, are minimum wage jobs and it is rare to find people who can give saintly care for such low pay. Fore many, the job may be just a paycheck,  a means of making a living.  Each home has an RN during the day and LVNs during the night.   As Luki reaches adulthood, I wonder if he will need to be placed in such "communities" ; or, would it be possible for me to open such a home in my retirement (or sooner).  I would rather have him stay under my roof than far away from my watch where abuse and neglect can go unnoticed or hidden.

 Today, I watched a video of an ABA therapist physically abusing a 3 year old boy during his therapy session at the child's own home! So enraging to watch.  My patient also told me a story of an independant adult autistic man who was being physically abused by his occupational therapist in his own apartment! My blood boils at such stories and makes me more worried and anxious for Luki's future.  In fact, I am seriously even considering home schooling him.

Could it be that many of these verbally challenged children with behavior problems are actually being abused or bullied at school and it is their cry for help or a natural reaction to what they suffer through day in and day out at school when they throw tantrums or exhibit behavioral issues? If so, it is wrong to think the problem lies intrinsically within the child and medicate them with psych meds.  

On another note, synchronicity seems to favor me and I can't help wonder if the universe is conspiring to help me  along my journey as a special needs parent.  Strange, that in the past, I have never had even one patient with anything affiliated with the developmentally disabled population.  After learning of Luki's condition, I have had so many patients (and their family members) who are/was/ is involved in the world of special needs.  How can I forget the former nun who taught developmentally challenged children for more than 2 decades, or the patient whose daughter was a special education attorney; the mother with an autistic child; the grand mother of a teacher who teaches special needs children and today, the home health nurse who works for an adult community care facility (DDN/IDN).  Truely, my plight is being noticed and I don't walk this path alone.

Today, Luki slurped his noodles.  Working those jaw muscles...