Friday, July 31, 2009

Social Security Interview

Ahhhh... Summer Vacation. A time to rest, relax, spend time with family... and go to Social Security for an interview.

Seeing as you have nothing better to do, how about you come on down to the Social Security office for a couple of hours and prove that your child is still disabled and that you're not hiding any assets from us.

This is not a request.

They sent the letter FIVE DAYS before the scheduled interview, giving me just enough time to go through all of my files to find EVERY PAY STUB SINCE 2007. Yep, you heard me. 2007. And my tax returns. And my most current bank statement. And proof of Child Support payments from my ex. And proof of financial aid for school. And anything else they may decide they really want but forgot to tell me to bring.

Every year, I get a 'request' to go to Social Security to discuss how I spend Queen Teen's benefits and to explain how we survive on so little money.

Let's see... I buy clothes at Goodwill and food from Grocery Outlet. That explain it?

Luckily, my case worker is probably the most reasonable guy in our local office. He doesn't treat me like a criminal hiding assets from the feds. And on one occasional he actually found a mistake THEY made and straightened it out. From the letter, it looks like he'll be interviewing me again. Thank goodness.

It's the principle of the thing that makes me so mad. Why does every social service agency treat the people who need their services like we're stealing from tax payers? Believe me, if my daughter didn't need these services, I would not be on my knees in your office begging for help.

And to those wankers who really do steal from tax payers by lying about their needs?


Wish me.

Wednesday, July 29, 2009

The Bathtub Pillow

Queen Teen loves to lounge in her bubble bath. She stretches out, arms behind her head, feet propped against the side of the tub to keep from sliding, and sings songs as loud as she can. "This little light of mine. I'm gonna let it shine!" "Oh Mr. Sun, Sun. Mr Golden Sun. Please shine down on me." "And I say hey, HEY. What a wonderful kind of day. When you can learn to work and play. And get along with each other."

Lately though, she's complained of not being "comfy" in the tub. She says resting her head on the tub is "too hard." And so I said, "Let's find a bathtub pillow." She thought I'd made that up, but I insisted there was such a thing.

This just shows how desperate I am to keep my daughter from getting the blues in the Summer. And to prove how desperate I am, I took her to Walmart. On a Sunday. Anyone who's ever been to Walmart on a Sunday knows how desperate I must be. I hate Walmart, so I avoid it as much as possible. But finding a bathtub pillow became extremely important.

Of course, Walmart didn't have one, but Rite Aid did. A soft, cloth covered bathtub pillow. Queen Teen couldn't wait to try it out.

I made her a bubble bath and she got in, started singing, then lay back on the pillow. She shifted her weight, sat up, fluffed the pillow, lay back again, sat up again, glared at it, fluffed it some more, lay back, sat up, then announced, "I can't get comfy."

I tried moving the pillow higher on the side of the tub. No luck. Queen Teen declared it wasn't comfortable. My frustration level slowly began to rise. Do you mean to tell me I went to WALMART on a SUNDAY, fought crowds, stood in a too long line to buy a filter for my fish tank despite the fact Walmart didn't have a tub pillow, drove around town to find the damn pillow, spent good money on it, and YOU DON'T LIKE IT?

She lay back again and then said, "I can't get comfy because my feet are on the other side."


"My feet touch the side."

I looked down at her feet and saw her toes pressed against the far side of the tub. "If you're feet didn't touch the side you'd slip."

"But they're touching the side."

"That's a good thing."

"I don't like it."

I took a VERY deep breath and said, "I think you're determined to be miserable."

She looked at me closely, pondering what I said for a moment. Then she slowly nodded her head. "Probably."

Monday, July 27, 2009

Summer Time Blues

I realize my last few posts have been on the negative side. Summer is not my favorite time of year. I don't tolerate heat well (must be where my daughter gets it) and the non-stop childcare wears me down. By the end of July I'm worn out, but we still have one more month to get through.

However, my days aren't terrible. Queen Teen and I are muddling through, taking each day hour by hour, and finding a way not to drive each other too crazy. We take our dog Bourre out for walks each morning, heading downtown to window shop and watch the city wake up. We stop for a drink at a cafe where Bourre rests under a shady tree to watch the people walk by. Then we head home before the heat gets too intense and Queen Teen usually stretches out on her bed and watches a movie on her video player (Arthur is her favorite, or Berenstain Bears) while I do a little housework. We have lunch, and then I think of something to do to get us out of the house: going to the library, visiting a friend, shopping at Big Lots, grocery shopping, seeing a movie... anything that gobbles up a couple of hours and is air conditioned. Then when the afternoon heat becomes mind-numbing, we go home and hide in the house. She likes to watch another movie and I like to surf the net or play the Sims. We play a game or draw pictures before dinner, then after dinner she takes a bath. Before bed she likes to play with her dolls or we read books. Then at 8:00 she has yogurt and goes to bed where she reads more books until 9:00. Once she's in bed I tell myself I'm going to write but my brain is usually too weary so I watch a movie (right now I'm re-watching the Firefly series. Shiny!).

Our days are slow, but not intolerable. Despite Queen Teen's frequent outbursts of frustration, we have fun. We sing songs and tease each other, laugh at silly jokes, play with the dog and discuss topics such as how interesting it is that small dogs have to walk faster than big dogs (we talked about that today). I'm lucky I can spend this time with my daughter because next summer I'll probably be working. No more leisurely summer days when I finish school.

So then why do I get such horrible Summer time blues?

Friday, July 24, 2009

A Little Retail Therapy

What do you do with a teenage girl who is so bored she may die (or so she claims)?

Go to the Mall.

We don't have a Mall in our town, so we drove an hour south to the closest city. My good friend Jody joined us and we three girls indulged our cravings for shiny new things, especially Queen Teen. She had a gift card to Justice where she picked out a new dress. We also hit the Disney store where we reminisced about our trip while checking out the toys. Even Jody got into the spirit when she almost bought an Ariel tub toy (It was so cool! Her mermaid tail fluttered so she could swim).

I told Queen Teen she could buy a new toy and I expected her to grab some kind of Cinderella thing, but she surprised me when she chose a Tinker Bell stuffy. It appears that Cinderella may have slipped from the favorite position. Since we saw the Tinker Bell movie this weekend, Queen Teen has been enamored with Tinker Bell and all her friends. The stuffies were two-for-one, so she chose a Cinderella doll to go with Tinker Bell. But she kept Tinker Bell in her lap as we rolled around in her wheel chair and Cinderella got stuffed into the shopping bag. Poor Cinderella.

We left the mall and walked up a tree shaded street lined with shops and cafes. The weather was gorgeous; a good 20 degrees cooler than our home. After exploring, we sat in the lovely sunshine near a fountain in the town square where Queen Teen ate her snack and Jody and I drank lattes. Queen Teen rolled herself around the little park, enjoying some freedom, happy to be able to go outside without being seared by 105 degree heat.

Back at home, the retail therapy buzz lasted for a whole day. She was cheerful and happily played with her new dolls. But by the second day, the blues slowly crept back in. Too bad the mall cure is so short lived.

Tuesday, July 21, 2009

Hot Weather and Boredom Combined with Teenage Hormones Can Be Dangerous

Today it is 104 degrees Fahrenheit. Not unheard of this time of year, but definitely annoying. Queen Teen and I have a small window of opportunity between the hours of 6 am and 10:00 am to go on a walk. By noon, we're hiding in the dark house, the curtains closed to keep out the dreaded sun.

Can you tell I'm not a sunshine, summer kind of person?

Neither is Queen Teen. She likes sunshine, but can't tolerate the heat. Her ataxia gets worse and she has a hard time regulating her body temperature so she's prone to heat exhaustion. We have to keep a sharp eye on her to prevent hot weather fevers. Going to the park or the lake on a hot day is out of the question.

We go through this every year. School is out, so Queen Teen is bored. She can't go to summer camp or other outdoor activities and all of her friends are gone doing all those summer activities without her. She gets lonely and depressed. I spend all my time keeping her cool while battling her depression, boredom and loneliness. After 14 years I should be a pro, and I was, until now. Because this year we get to add teenage hormones to our summer enjoyment.

I need a double margarita. Or how about I go back to school for another five weeks? Spending all day in class is way more fun than being stuck in the house with a hormonal, angry teen age girl.

"Let's play a game," I suggest.

"I don't know," she says, scowling.

"It will be fun. How about Dominoes?"

"I guess."

We sit at the table and play the game. She wins. We play again and she wins again. I'm not letting her win, but she suddenly slams her fists on the table and shouts, "Why do I always win?"

I say, "Most people are happy to win."

"Not me. It's so BORING."

She shoves the dominos onto the floor. "Oh no you don't," I say. "You don't throw toys. Pick those up."

She cries.

I leave the table and count to a thousand.

She keeps crying. "Why do I always win?"

She finally starts to pick up the dominoes and I go in to help. We put the game away and then I say. "Would you like a drink?"

She smiles and says yes and we sit together happily chatting until we finish our drink. Then I ask her if she'd like more.

"No." She crosses her arms and looks away from me.

One second ago we were laughing cheerfully and now your angry at me again.

I decide to ignore it and leave the table. As long as she isn't throwing dominoes or cups, she can be as mad as she wants.

A few minutes later she comes to me and gives me a big warm hug. I thank her and she goes into her room to play.

A few minutes after that she is lying on her bed staring at the cieling, saying, "There's nothing to do."

This was a good day.

Wednesday, July 15, 2009

The Medi Cal Letter

Last week I got a letter from the Department of Health Care Services in Sacramento, California, detailing what services will no longer be provided through Medi Cal. It was dated June, 2009, but I received it July 13th. Very thoughtful of them to send me a letter about cuts to services "Starting July 1st..." two weeks late.

These changes don't affect Queen Teen because she's under 21, but if you're over 21, you can no longer get dental care, speech therapy, podiaty, audiology, chiropractic care, acupuncture, optometry (although ophthalmology is covered), psychological counseling (but psychiatrists and county mental health services are covered), or incontinance creams and washes.

Poor people aren't allowed to have teeth, I see.

There are some exceptions. If you live in a skilled nursing home or are pregnant, you can still go to the dentist and get your eyes checked. Also, if you are part of the Genetically Handicapped Person's program, receive help through county mental health, use Medicare part B, or "receive the services directly from a physician (what does that mean, I wonder)," you get to keep MediCal services.

If it's an emergency you can still get services, so if that tooth abscesses because you couldn't get to a dentist, you can go to the ER for help. Otherwise, you're out of luck.

Surprisingly, people with disabilities, other than genetically handicapped people and the elderly, are included in those who have lost "optional benefits." I was surprised by this. That means if my child was over age 21, she'd lose dental, vision and audiology care. If these cuts continue, that's exactly what will happen in 7 years. Then what?

Monday, July 13, 2009


All done with Summer semester and I can now unpack my suitcase and put it away in the back of the closet for a few weeks. I have six weeks to enjoy a little bit of sanity in my own home. There are books begging to be read, movies longing to be watched, a yard yearning for my touch, a dog eager for a walk, and a hubby and daughter who can't seem to get enough of me.

They are driving me crazy.

I know, I know, they missed me. I just wish I could have a few days to declutter my brain and dust off my desk before I have to form complete sentences. Because right now I need to hole up in my bedroom and not communicate for a few days. I am burnt out.

Alas, the phone keeps ringing, the bills keep coming, the weeds keep growing and the child must be fed. I hadn't even unpacked my suitcase when I had to deal with a paperwork problem and make decisions about a type of service for Queen Teen.

I love my family. I really do. I am immensely happy to have both of them in my life and I wouldn't give them up for any amount or stretch of sanity. And it really isn't them; it's the rest of life. I would have plenty of time for my husband and child if the stupid phone wouldn't ring and the laundry did itself.

I guess I could take the phone off the hook, but what can I do about the laundry?

Monday, July 6, 2009

One More Week of School for Mom

Somehow I've managed to pull off another semester of Grad School (maybe I shouldn't say that yet. I still have three more days to go). Here I am at a dear friend's house in my favorite city in the world, San Francisco, dragging my tired butt through another week of classes.

It's been hard on Queen Teen for me to be away all week, but she's been the epitome of a trooper. Monday mornings I put her on the bus to school and give her a kiss goodbye. She looks up at me with those big blue eyes, sighs, then bravely says, "See you, Mommy." I tell her I'll be back Friday morning and she says, "I know." She waves to me through the window as the bus pulls away and a part of my heart gets pulled along with her.

But I would be lying if I said I wasn't also relieved to get away from home for FOUR WHOLE DAYS. Four days of nothing but me and school and time with friends. Four days every week in San Francisco where I can take long walks through the neighborhoods in between classwork, soaking up the creative pulse that is The City. Despite homework and deadlines, my heart rate decreases and my shoulders relax. There is no one to keep up with but myself.

The hardest part of my five weeks of summer school has been managing Queen Teen's services. I messed up the respite hours so now owe the respite worker money from my own pocket. I still haven't found a new neurologist to replace the doctor who decided to move away to LA (he offered to see us there. Gee thanks!). After three months, we still don't have a new wheelchair or the knee brace! I haven't had time to call and nag anyone so things aren't getting resolved. And her classroom teacher called one day needing advice about managing Queen Teen's panic attacks, but I was in my class so couldn't respond. Rick has done his best to stay on top of things but it really is difficult to case manage her care, especially when you don't know who all the players are and what all needs to be done.

It will be good for me to be home full time, focusing on Queen Teen's care. But there's a part of me that resents that need. I DON'T want to spend all my time calling doctors and specialists and service providers, using all my energy coordinating appointments and agencies. I want to continue studying my books and learning new skills for a new job in a field that fascinates me, not arguing with Social Security over whether or not I submitted a form on time. Too much of my life has been spent haggling with organizations who supposedly are there to help my daughter. I don't want to do it anymore. Unfortunately, you can't resign from this job. I am her mom and she needs me. So I will finish these two classes and go back to my "real" job as case manager of Queen Teen's needs.

Despite my annoyance at dealing with all that, I'm happy to spend time at home with my girl again: going for long walks in the morning before it gets hot, making popcorn and watching Disney movies, working on her scrap book, playing board games, reading books, and just being silly.

This morning when we got ready for school, she pointed to the day on her calendar marked with a smiley face. "This is when you're all done with school." Then she giggled.

I hugged her. "Yep. All done."

"That's good," she said, as she snuggled closer against me. "Cause I don't like you going to school so much."

I know, darling girl. You're really going to hate it in the Fall when I have class every Saturday for two semesters. But we'll worry about that later.