Friday, March 18, 2016


Many many many autism families hear this phrase from their diagnosing medical provider.  We didn't.  That doesn't make it better for anyone
"There's nothing you can do and you need to start looking for a long term care facility for when he/she is big enough that you can't control their behavior and they need to be institutionalized"

I personally know parents who have chosen long term care facilities because they were out of options, out of money (those LTC facilities are often paid for by the state if the child qualifies as disabled), out of sanity, out of everything.  It was a gut wrenching, heart eviscerating choice.

As ya'll may remember, Dominic was approved for skilled nursing hours and in Colorado those can be administered by a parent if that parent is a CNA.  We decided to send me to CNA school, because we don't leave resources on the table.   I have just finished the clinicals portion of my CNA class, and our graduation is tonight.  Our state boards written and skills tests will be sometime in the next month or so.

These clinicals were eye opening and heart wrenching at the same time.   I cannot see myself ever working in that kind of environment.  We were at a long term care facility that was a mix of the elderly, adults there for assorted rehab, and either brain injured or developmentally disabled young adults (as students we were not privy to any diagnosis).   For the most part, the residents were very sweet (and many were low to non verbal which wasn't unfamiliar given how hard we've worked with Dominic), and the staff was overworked and under compassionate.

Last night I got to assist the Shower CNA (by Federal law, these facilities are required to offer showers to residents 2x a week) giving a younger - she might have been 30 - either developmentally disabled or brain injured woman a shower.  I'll skip the gory (and they were gory) details of the shower room being too over stimulating, and go to the end.  We had finished her shower, gotten her lotioned and dressed and the shower CNA was getting ready to move on and I asked about her hair.  It was a tangled mess.  I offered to comb it.  And then I asked the resident if she'd like it braided.  And she lit up and gave me the biggest smile. So I braided it.  For the rest of my evening, every time she saw me, she got a HUGE smile and said "Joy, Joy, Joy". 

This is our childrens future, if we don't change it now. Its bleak.  Its full of being left sitting alone in the hallway in a wheel chair (or other chair) while the CNA's frantically run between rooms answering call lights and putting people to bed.  Its lonely - its smelly from the incontinence.  Its loud from the yelling and violence. Its being restrained in a bed at night with giant bolsters that make it impossible to "fall" out of bed (or even get out of bed if you ask me).  its having your diapers changed by many different, strange hands.  Its the loss of basic human dignity.

And if we don't change right now, this is what our children will face when we are gone.

We need to follow through on the concepts of Autism villages (and many are already underway), where adults can live in small, safe, communities, with as much independence as possible, with caretakers who are compassionate and passionate about what they do.  Where they can do tasks like gardening and raising livestock, anything that they love, to keep them active and engaged, so they don't end up so obese they require a machine to move them from their wheelchair to their bed and back, covered in pressure sores and in diapers.

Yes, this was a vent, but I've seen the future and its ugly. 

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