Sunday, June 10, 2012

I was drowning in paperwork, so my husband rescued me.

On Sunday, I spent five hours of a beautiful, sunny day locked up in my room surrounded by piles of SSI forms, pay-stubs, bank statement, savings statements, insurance statement, medical reports, old IEP's, current evaluations, CCS authorizations, Regional Center authorizations, receipts, artwork from my daughter, articles I wanted to read but never managed to, advocacy information, special education legal guides, a few Johnny Depp pictures, and paperwork filed under "miscellaneous." My entire room, from floor to desk to bed, was covered in white and beige paper.

I was preparing for our annual Social Security interrogation... I mean the "Representative Payee" interview. Every year I need to show Social Security that I am wisely using the money they give my daughter for her care, while also showing we need the help and that I'm not trying to screw the government out of benefits we don't need. I have to justify every expenditure and keep track of every penny, showing bank statements and pay-stubs for an entire year. I imagine it must feel a lot like preparing for a deposition.

Since I had to organize the paperwork for that, I decided I might as well tackle the whole mess. My filing system of throwing paper behind the bed was no longer working. Typically, I keep excellent records, but this last year has been a tad more hectic than normal, so in a rush I'd toss documents into a pile to put into the filing cabinet "later." Later had arrived, and I plowed into the pile with determined dread.

Two hours in, I was in full blown panic; my body was shaking and I couldn't make sense of the forms I was reading. Is this my bank statement, or Queen Teen's? What year is it? How far back do I need to go for pay stubs? Is this an original or a copy? How long do I have to keep this shit? The filing cabinet was packed with every important document since Queen Teen's birth and here was more needing to be filed. More and more and more and it just kept coming and I had to keep track of it all and if I lost anything it seemed to cause problems but how much more could I cram into the filing cabinet and OMG!

My husband entered the room. "Honey."

I jumped. "What?"

He looked at me and then the pile, asked a quick question, then left. Smart man.

After another thirty minutes I walked out of the room needing to escape the claustrophobia of paperwork. My husband handed me a glass of wine and said, "Come outside."

"I need to finish filing."

"Just a minute. I want to show you what I'm doing."

"You mean you want me to help you." I scowled at him.

He shook his head and said, "I just like the company."

I sighed and resigned myself to going outside to look at the fence he was repairing. We chatted about lattice and rotten wood and how many posts he had to replace. I looked at the flower pots he bought earlier that day and remembered the succulent still sitting on my kitchen window. It would look lovely in that pot. Soon, I was happily potting the little succulent and taking it to its new home in the back garden.

Oooh, my husband is good. All he had to do was get me outside near my plants to help me calm down. Just touching a little dirt and smelling the damp soil after I watered made the panic leave my body. The sun was warm but not too hot and the breeze smelled like jasmine and old wood. I smiled at my husband who was busy tearing out old boards from the rotting fence.

Smart man.

Wednesday, June 6, 2012

A Fascination with Terrariums

As I've mentioned in an earlier post, I've been having trouble writing lately. Instead, I've been drawn to the delicate beauty of terrariums. A tiny plant; some sand and rocks; a bit of stone and glass; a surprise of feather or bone. I arrange the various items to decide which plant will go with which shell and the shape of the bowl, then start arranging. It's like creating living sculpture. My husband likes to call them, Terenaiums (a mix of my name and the word. since I'm the one making it, why not?

Here was my first attempt:

A tall, square, glass vase filled with rock, moss, soil, and then two cuttings from the plant that was tangled in my kitchen window (which I can't remember the name of now).

I also added shards of sea glass
I'd collected at the beach for more sparkle.

I made this one using the glass bowl my sister-in-law had given me and an abalone shell Rick and I found at the beach.

With the addition of sand and smooth glass beads, it reminds me of water lapping on shore.

This one I made for my husband.

If you look closely, you'll see the glow in the dark UFO surrounded by bits of reflective debris.

Soon the plants will grow around the crash-site until all traces are hidden (unless Moulder and Scully get there first).

I am obsessed with terrariums now; I see little bits of plant life, wood, shells, coins, figurines, chicken bones, rocks, old forks, antique buttons and left over party favors and instantly wonder what kind of terrarium I could make. Looking at plants, I try to decide if it could live surrounded by black sand in a glass jar. I've always been into plants, but now I am making artwork with plants and random bits of interesting things I find lying on the ground when I walk.

I bought a great book called Terrarium Craft, by Amy Bryant Aiello and Kate Bryant, and it is fabulous. An inspiring book with great ideas and gorgeous photography. Includes step by step instructions on creating terrariums in which your plants will thrive. 

I'm hooked, so my husband built me new shelving in the kitchen to display my creations. And don't be surprised if everyone I know gets a terrarium someday. They'er just so fun to build. And a soothing break from working with words all the time. I'm still using good creative energy, but not in a focused cerebral way. A perfect break for my overloaded brain.

Feeling better? Good, that means we can smack you around more.

Usually, meetings with our Regional Center worker are helpful and positive. Our worker comes to the house and the two of us plan Queen Teen's year. What activities would she enjoy? What are her current challenges and what kinds of support does she need? What kinds of support do I need to continue caring for her? What do I dream for her future and how can the Regional Center support those dreams? What does she dream of doing when she's grown up and where would she like to live?

But this time, the meeting was far from positive. 

It began in the usual way; we discussed Queen Teen's current issues and her changing medical status and then talked about some of the challenges she's experienced at school. We went over her past I.F.S.P. (individualized family service plan. like an IEP, but broader.) and updated information. I signed permission forms for the Regional Center to be able to talk with Queen Teen's doctors and other service providers. And then, I told him that that Queen Teen was approved for Protective Supervision from In-Home Support Services.

"She was?" he said with raised eyebrows.

"Yes. I applied like you suggested and she was approved," I said.

"Oh. That might be a problem."


"Because there's a new ruling about Protective Supervision that I just found out about this morning. If you are getting Protective Supervision hours, you can't get respite."


"I'm sorry. I just found out about it. You can't have respite and Protective Supervision at the same time. The State considers it a type of respite. I'm sorry."

I felt the air leave my body as I slumped back into my chair. "How is Protective Supervision even remotely the same as respite? I'm working. I'm taking care of her around the clock. We needed more hours because her needs have increased. This isn't respite. Respite is the only time I get a break."

"I know, and I agree. But the State doesn't agree with us. The new ruling states if you have Protective Supervision then you can hire someone else to provide respite."

"Who am I going to hire? I haven't been able to find anyone to watch Queen Teen after school. Who is going to watch her other than our highly trained respite worker?"

"I'm sorry."

"So what the hell is the State of California going to do with all the parents and caregivers who end up having nervous breakdowns because they don't get breaks anymore?"

He said he was sorry again. Then he told me about more cuts to services (which are so annoying and stupid I won't bother going into) and informed me that Queen Teen can never live in a group home because she isn't ambulatory. Her choice is to live with me forever, or in a nursing home. 

Thanks to massive budget cuts, gone are the days of the friendly and supportive I.F.S.P. Instead, the Regional Center is cutting costs by forcing more of the care and support of their clients onto families and other agencies, which are also cutting care. Basically, Queen Teen and I are screwed. As she becomes more medically fragile her daily care and support will land primarily on me. 

What are kids without a mom like me going to do when all of their services are cut?

I was furious and I know our worker was embarrassed; he left as quickly as he could. After pouring myself a glass of Pinot, I went outside into the yard and cried in my vegetable garden. No respite? No support? No days off... ever? I am not lucky enough to have a large and supportive family to help out, nor are many of our friends able to step in and watch Queen Teen for a few hours. I am exhausted, terrified about the future, and overwhelmed by Queen Teen's increasing needs, and now I am totally fucking alone. 

That's how I felt for a few days. Then I did some research, and the more I researched the ruling (which I found on-line) and dug deeper into some of the other cuts our worker talked about, as well as the "never live in a group home" statement, I realized that the Regional Center is being reactionary. Yes, the cuts are bad, and I understand that they are operating on a budget that will barely pay their electrical bill, but walking into my home and telling me everything Queen Teen can't have or will never have is unacceptable. It's called an Individualized Family Service Plan for a reason: individualized. There is no way I'm giving up all the supports this family needs to help Queen Teen thrive without a fight. 

But damn, these last three months have left me bruised and emotionally limping. Do I really have to keep fighting like this for the rest of her life?

Friday, June 1, 2012

Say What?

One of the blogs I love to read is called "Say What?" The writer is a mom who's child has special needs, including deafness. Her writing, stories, and photos are great. Plus, she provides really good info, like this:

This is a link to a blog post about grants to help pay for hearing aids, and a video on putting in a kid's hearing aids. Just had to share it.