Valerie’s Week in Review – Friday, August 21, 2015

Dear Governor Brown,

Once again, I’ve missed a week of writing and I apologize. Like so many people my age, I have an elderly mother in another state with health issues and I had to be there. Unfortunately, having a child with disabilities doesn’t exempt us from the more typical human situations.

I was also unable to attend the Second Extraordinary Session hearings, but I did watch them on my computer. I tried to understand the intricacies of the MCO tax, and I hope that the Senators on that committee were able to decipher this very complex issue. It’s not clear to me whether any funds from this tax can go into the developmental service system, but at least they will offset other demands from the state’s wallet.

The information presented at the Assembly hearing was more familiar to me. And more frustrating, in many ways, to hear the same statistics quoted yet again, to hear more and more heartbreaking stories of program closures, long waiting lists, and people with developmental disabilities staying home waiting for services. It might be just as well that I was watching in privacy instead of at the hearings because I just sat there crying most of the time, as feelings of helplessness overcame me.

Assembly Member Chad Mayes, new to this discussion, asked “Why wasn’t this addressed in the normal budgetary process?” and nobody really gave him a clear answer. Several people in panels and public commentary talked around the question, citing “philosophical differences” between Democrats and Republicans and your reluctance to use existing funds, but nobody gave a direct or comprehensive answer.

Assembly Member Susan Bonilla asked “When do we declare an emergency? How can we create a trigger to pull down rainy day dollars?” There was also no clear answer.

Every single bit of testimony spoke to the urgent need for funding to keep programs open, the looming threat of losing billions of Federal dollars, and the immeasurable cost to consumers in loss of care, community, dignity, and choice.

I wonder why, as our leader, as the man I and all the parents I know voted for, you don’t speak to us, your constituents, about this situation. So many of us have contacted you so many times, and I believe the urgency and enormity of the challenges facing our community must be clear to you. You’ve issued statements addressing climate change, transportation, and many other things, but I have not heard one word from you addressing your constituents with developmental disabilities and their families. I don’t think this is too much to ask.

Sincerely,

Audrey deChadenedes

 

VALERIE’S WEEK IN REVIEW
Friday, August 21, 2015

Valerie’s been having a challenging time, as she continues adjusting to her new medication dosage (we raised it one more time) with only a slight decrease in seizure activity. Her neurologist isn’t worried, since it takes time for the higher dose to take full effect, but the combination of more meds and continuing seizures leaves Val tired and anxious.

She’s been so sleepy in the morning that it’s difficult to get her up and out for activities or to keep her awake once she’s out. Yet at bedtime her muscles are so stiff and her mind so agitated that it’s hard for her to sleep. I massage her neck and shoulders and stretch out her arms and legs. I give her extra calcium and melatonin and play soothing nature sounds to help her relax. I consider administering additional medications, weighing the possibility of sleep (for both of us) against the certainty that it will mean even more difficulty getting and staying awake the next day. Most nights I stick with natural remedies.

We’re also handling staffing issues, as the summer comes to a close and two of our three workers want the same week off to visit family. We were able to do a bit of juggling with our remaining caregiver, but I’m still covering five days in a row around the clock.

This is a trade off for the couple of days I took to go see my mother, so I’m not complaining, but the fact is Valerie prefers being out in her world with her young caregivers. Being with her mom makes her feel like a baby and she lets me know she doesn’t much like it. I have to keep a bit of distance both physically and emotionally, and remember not to cuddle or use any pet names.

We’re trying to stick to her usual schedule even though she has trouble using her communication device with tired eyes and runs out of steam in the middle of her theater class. As the weekend approaches we agree that it will be fine to take it easy for a day or two. Maybe we’ll take a walk around the neighborhood, but our biggest plans are simply to catch up on rest and think about the week ahead. Right now that sounds like heaven.

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