Valerie’s Week in Review – Friday, August 28, 2015

Dear Governor Brown,

This coming Thursday, September 3rd, the Lanterman Coalition is sponsoring a rally in Sacramento to remind the Legislature that now is the time to heal our system and restore the promise of the Lanterman Act. Valerie and I will be there to gather with other advocates, family members and people with development disabilities.

Please pay attention, Governor Brown.

Please hear our voices.

Please take us seriously.

Please understand that we are in a crisis.

Valerie and I will stop at your mailroom while we’re at the Capitol, and leave you some more words and pictures. I hope you’ll take the time to consider us and the other 280,000 Californians with developmental disabilities, and take action to fix this situation now.

Thank you.


Audrey deChadenedes

Friday, August 28, 2015

As Valerie’s seizure activity and low energy continued, I put aside last week’s goal of sticking to her regular schedule and adjusted our plans for her comfort. I decided that, at least for a few days, we might as well take advantage of the flexibility we have now that we’re not tied to an outside day program. With her other staff still out of town there were no hours but my own to rearrange and it was relatively easy to make this shift.

Mostly, she slept late and eased into her days very gradually. She was able to attend and participate in her late afternoon and evening activities, but not much more than that.

Thank goodness, the extra sleep and minimal demands had a restorative effect. By the end of the week Val was beginning to feel better, and we started easing her back into daytime life. It will still take a while for her body to fully adjust to her higher medication dose, and we may not have seen the end of her seizures, but this is a nice place to rest.

As we reached the weekend, Valerie looked forward to her regular Saturday visit with her best friend. Unfortunately, her friend’s Supported Living Program recently lost some critical staff members, resulting in a few details falling through the cracks, including the scheduling of transportation and support staff. No visit this week, much to Val’s disappointment… Sadly, this was not the first time a visit had to be cancelled due to staffing issues and it probably won’t be the last.

We used the time to plan for the week ahead, to brainstorm new activities as the season changes, and strategize for our Thursday trip to Sacramento. All hands will be back on deck, and not a minute too soon.

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