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.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
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.

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.

Valerie’s Week in Review – Friday, August 7, 2015

Dear Governor Brown,

I wasn’t able to write last week; I hope you didn’t think that I forgot about you – or about the need to repair the developmental service system.

Interestingly, I did hear from you, the first time I’ve received any correspondence from your office since I began sending you weekly letters in April. I was a little confused about why you sent me a message about climate change, since I’ve only written to you about one issue – DD funding – but I suppose I should be grateful to be included on your mailing list.

In another week, the special sessions will resume and our legislators will continue looking for funds to restore the cuts – more than a billion dollars since the great recession – that the developmental service system has sustained. I think the committee members truly understand the desperate need to stop the collapse of this system, and I am very hopeful that real solutions will be found.

Valerie and I plan to be in Sacramento to provide our perspective. We’ll be sure to stop by and stay hello.

Sincerely,

Audrey deChadenedes

VALERIE’S WEEK IN REVIEW
Friday, August 7, 2015

Valerie has been having seizures, despite being on two different seizure medications. There have been several worrisome episodes recently, and we were finally able to have an appointment with her neurologist last week. The outcome of our consultation was an increase in one of her medications, and now we’re dealing with the extra sleepiness and confusion that invariably follow raising dosages. The expectation is that these side effects will diminish over the next few weeks, but for now Val’s daily schedule has to be adjusted around her dramatic lack of energy.

Since it’s impossible to predict how this will look on a day-to-day basis, we keep our options as open as possible and all plans must be flexible. Some days Val can’t be awakened until two or three hours after her normal time; other days she runs out of steam and needs a nap after just a few hours of light activity.

Actually, we have it pretty easy. Seizures are common in Rett Syndrome, Valerie’s disability, and they are often difficult to control.

Rett syndrome, often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay, is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls.

Rett syndrome is caused by mutations on the X chromosome, on a gene called MECP2. It occurs worldwide in 1 of every 10,000 female births.

Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor, and autonomic function. These can include learning, speech, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

There have been amazing scientific advances since Valerie was born; at that time there was no test, and we didn’t have a definite diagnosis until Val was in her teens. Today, we have genetic testing, clinical trials on promising drugs, and ongoing research all over the world.

Please visit http://www.rettsyndrome.org to learn more about this disorder and the enormous amount of help available for families facing life with Rett Syndrome.

Rett syndrome presents many challenges, but with love, therapy, and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community.