The Doctor wants to control my entire life!

I'm taking Queen Teen to see a therapist in Mill Valley tomorrow. This person is supposed to help us manage Queen Teen's anxiety issues, especially around doctor's appointments. But right now, this appointment is creating anxiety for her, not helping.

When I told her about the upcoming appointment two days ago, she yelled that she wasn't going. Luckily I told her in the morning right before the school bus came so I didn't have to listen to the yelling all day. When she got home, she seemed to have forgotten about the appointment. But today when I picked her up from school, she was really quiet. When we got home she told me she didn't want to go to the doctor's.

"I'm tired of going to doctor's. Why do they have to be so far away?"

"I'm tired of them too, Honey. I wish they were closer."

"Well I don't want to! I hate doctors!" Then she started crying. It got even better from there.

Her councilor came to the house for his usual appointment and the two of them talked in her room for a while. She told him how angry she is about having to go, how much she hates doctors, how they are boring, how the car ride is too long... and on and on and on. She started to cry and he told her everything would be okay. When it was time for him to go, she went into the hallway and hit her calendar with two fists. "I'm not going and you can't make me!"

Oh this is fun.

Sometimes I really hate being the mom. I hate having to drag my furious daughter to doctor's appointments, hate having to hold her down when they need to do blood work, hate bribing her to get in the car. I hate the long drives, the long hours, the endless paperwork. I hate my daughter's screams of rage and then the tears when she realizes there's nothing she can do to stop it.

At dinner she looked directly at me and said, "The doctor wants to control my entire life!"

That is probably exactly how it feels to her. She has very little say about what happens to her. All she can do is fight for the meager control she has.

Where is the balance in all of this? How do I help her stop feeling so helpless, while also providing the care she desperately needs? How can I help her understand doctors are trying to help, not torture her?

Maybe the councilor and the therapist tomorrow will help me find some answers. But for now, this really sucks.

Um, excuse me... could I have my vacation now please?

I must have been crazy to think I would actually get some time to lounge on the deck in my underwear and read books this summer. Since school ended two weeks ago, I've been racing the clock every day, playing catch-up with the pile of work that's gathered since the first day of Spring semester (back in January). There are forms from various agencies needing to be filled out, doctor's appointments to drag Queen Teen to, book marketing and book orders, submissions to the press needing to be read, mending, housework, inventory, and the end of the business tax season (hello sales tax!),  all joining forces in one colossal mountain of work, demanding attention now. There will be no lounging in our underwear reading books; there will be tasks to complete! Many, many, many, many, many, many, many tasks to complete, and all before the end of the month.

Starting with : your car! 

If I can't keep up with the housework inside the house, do you really think I'd manage to keep my car clean? Not likely. But when my husband pulled half a burger from under my car seat and asked, "How long has this been here?",  I knew the car had surpassed filth. That first Monday after school ended, I cleaned my car from top to bottom, vacuuming upholstery, scrubbing spilled soda out of the cup holder, wiping six months of dust off the console, picking something sticky off the steering wheel (chocolate?)... I won't tell you what other things I found buried under the back seat (things I can't blame on the child, unfortunately). And while doing all this scrubbing, I discovered a universal truth: dog hair is forever. No amount of scrubbing or vacuuming with an industrial Shop-Vac can remove dog hair from the interior of a mini-van. Can-not-be-done. But at least all signs of graduate school filth have been removed from my car.

The next day, we all went to Stanford for Queen Teen's MRI. We made tuesday the fun day, wandering around the Stanford mall and then exploring downtown Palo Alto, which is lovely. Spending the night in a motel, we got up extra early to haul Queen Teen kicking and screaming to the 8:00 am appointment at Lucille Packard. She had to have general anesthesia for the procedure, but you'd think we were asking her to eat that month old burger I found in my car. Rick had to drag her out of the car and into the hospital, and then when the nurse tried to get her to drink the medicine that would help her relax, she started screaming and kicking. One Nurse got so upset she left the room. I can only imagine what she must be saying in the break room. At one point in the battle, Queen Teen managed to break free from Rick's powerful arms, only to be capture by me and then forced to drink that yucky medicine with her head held back and the nurse squirting it down her throat with a syringe. I don't know if the medicine started to work, or she just crashed from the adrenaline, but she looked at me with angry eyes and said, "Let's just get this over with." Then she fell asleep.

Times like those make me wonder if all these tests are really worth the trauma they generate.

Now we're back home. Queen Teen seems to have recovered from the torture of the hospital MRI. She and I are hiding from the 100 degree temperature outside, and fighting epic boredom. The AC in my van died, so we're trapped when it gets over 90. Queen Teen can't tolerate the heat, so we watch movies, color, play games, and try not to drive each other too crazy. I dash around from task to task, constantly interrupted by "Mom...."  There's another reason I was crazy to think I'd be able to do any lounging this summer: Queen Teen is out of school, too. There isn't a mom on the planet who gets to relax when the kids are out for summer.

Maybe next month?

Vaccinations, sunshine withdrawals, and Laurie Berkner

"Rain, rain, rain! Why is it always raining?" Queen Teen shouts. She has said this every morning and several times throughout the day for a week. I can't really blame her. I love the rain but even for me this weather is a bit excessive. 7.25" in only three days, and it's still pouring. Occasionally it hails and the wind blows so hard from the south there has been rain-water pushed under my front door, making the entry damp and slippery. Queen Teen is a sunshine girl;she needs sunlight to make her smile. When it's gray and cold for more than a couple of days her spirit matches the weather: she gets gloomy.

And then to make the week extra fun, she got vaccinated.

We were finally able to get Queen Teen the H1N1 shot. She's been on the waiting list at the pediatrician's office for two months, and although there have been open clinics via the health department in our area, there was no way Queen Teen was going to stand in line for two hours waiting for a shot. Going to the doctor to get one and waiting 35 minutes was bad enough. She screamed and cried and hit. Luckily her dad came with us to help hold her down while I shoved up her sleeve, held her arm out to the frightened nurse, and said, "Now!"

I hate doing this but it's the only way to get her vaccinated, or her blood drawn. But I know every time we do this it just adds to her trauma and PTSD. I'm surprised she doesn't break into hives just at the word "doctor." By the time she's grown-up and able to make her own medical decisions, she's going to need daily therapy just to walk into a doctor's office for a check-up. That's why I only force this on her when it's really, really, really, really, really, really, really important. The H1N1 virus made this year's flu shot extra important.

Queen Teen was so upset she didn't even want to go to Starbucks. She wanted home: now! Then she hid in her room and rubbed her arm where she was injected. I keep trying to tell her that if she relaxes it won't hurt so much, but in the throes of panic she can't hear me. I gave her tylenol and juice and left her alone to sulk.

After a few minutes she came to find me. I supposed I was forgiven. She came into my room where I was surfing the internet and I suddenly had a brilliant idea.

"Come here, doll." I pulled her toward me and sat her on my lap, then clicked on Laurie Berkner's website. Together, Queen Teen and I watched a few of Laurie's webcasts. It was like the sun had broken through the rain clouds. Queen Teen was laughing and singing along to the songs. She grinned and then hugged me tight, and then we sang, "The Goodnight Song."

"I'm a little frog and my daddy loves me.
I'm a little frog and my mommy loves me.
And when they tuck me in to sleep at night,
they say Ribbet Ribbet Ribbet, good night.

Goodnight. Goodnight. Goodnight little froggy goodnight..."

No matter how bad things might get in Queen Teen's world, Laurie Berkner always makes her feel better.

Sometimes, whether you have a good day or not depends on how you look at it.

Yesterday, I drove Queen Teen back to Stanford Audiology in Palo Alto. Neither of us was pleased about this. What fun! Sit in the car for three hours, sit in a doctor's office for two, then sit in a car again for another three hours, if we're lucky, because if we hit traffic between Novato and Windsor that will add another hour to the commute. Can't frickin wait.

I woke up at 6 am and rushed around to get myself ready while guzzling enough decaf to shake the cobwebs out of my brain. (Yes, I know it's easier with caffeinated coffee but caffeine makes me more agro than I normally am.) Then I woke up Queen Teen and spent the next hour and a half dragging her from bed to kitchen table to bathroom to bedroom to car. She decided she didn't want to go, and didn't know what she wanted to wear, and didn't want just one pony-tale in her hair, she wanted two, and her socks felt funny and her sunglasses were dirty and she needed books to read in the car but she couldn't decided which books to bring and why did we have to go to Stanford anyway?

It was a very good thing I didn't have caffeine because it was 8:30 before we got on the road and I was so annoyed with being stuck in the car with grumpy teen I probably would have run over the first squirrel who decided it would be fun to play chicken with my car wheel. As I filled up the gas tank (another joy inducing venture), I took a deep breath. This has to stop, I thought. It's going to be a very long day with a lot of driving and if you're this unhappy before leaving town it will be an unbearable day. As I drove the van onto the freeway heading south, I took another deep breath and decided to make the best of it. We can have a good day or a bad day. It's really up to me.

I decided to have a good day.

After a few minutes I felt calmer, not exactly pleased to go to Stanford, but not dreading it as much. And Queen Teen seemed to pick up on my improving mood as well because she started to chatter about how sunny it was and weren't the trees "pretty." We listened to Laurie Berkner and sang along to our favorite songs, although Queen Teen decided that I needed more practice singing. We arrived in Palo Alto with enough time to have lunch at the Stanford mall and then take a stroll. The shops are starting to put up there decorations and there was already a Santa display with Santa Clause greeting children. Queen Teen decided not to say hello, but she grinned when she saw Santa.

The appointment was quick. The doctor checked her ear molds and cast new ones, then checked the settings on the hearing aids themselves. She also fixed the battery door which kept popping open, and worked on the FM system. A lot done in only an hour and half. Queen Teen was relieved there were no long, BORING hearing tests this time. We'll do that when we go back next month to pick up her new ear molds.

We did hit rush hour traffic past Novato, but it wasn't as terrible as it could have been. I stopped at Borders Books in Santa Rosa for a break and so Queen Teen could pick out a few books to replace the ones she's thrown out. After another hour of driving, during which Queen Teen sang Christmas carols, we were home at 6:30, weary and hungry, but not miserable.

As I kissed Queen Teen goodnight, she said, "I had fun with you today. Except for the boring car ride. But it was okay."

"Me too, sweetie," I said.

The Audiology Marathon

Queen Teen had an audiology appointment Wed. morning at Stanford. I decided to make it a fun trip and leave on Tuesday, giving us an extra day to play, plus a stay in a motel that night. On our way to Palo Alto that day, we stopped in Santa Rosa to have lunch with Rick, then we drove to San Francisco where we took a break at my school, San Francisco State University. I gave her a tour of the campus and showed her where my class is.

"Now you know where I am every Saturday," I said.

"Cool," she replied, looking around the classroom with a satisfied grin. "I think it's funny all of us are going to school."

But the highlight of the day was when I introduced her to one of my teachers. Queen Teen was shy at first, but warmed up quickly, especially when she discovered that my teacher ALSO wears hearing aids.

"See," my teacher said, pulling her hair back from her ears. "I have them too."

Queen Teen's eyes widened. "I didn't know other people had hearing aids!"

"I told you there were other people in the world," I said.

She looked at me and then pointed to herself. Her eyes sparkled and she sat up taller in her chair. "There are other people different like me!" Her declaration sounded like the words of a scientist who'd just discovered intelligent life on Mars.

My teacher and Queen Teen talked about sign language and hearing aids, and as I listened to Queen Teen's animated chatter I realized what a relief this discovery must be for her. Not only are there people "different" like her, but there are adults who have jobs and are capable. This woman has hearing aids, but she's my TEACHER. What a mind-blower that must be to a teen girl who thinks she's the only "weird" girl on the planet.

We continued our trip to Palo Alto and landed at the Stanford Mall. I love this mall; it's so beautiful and polite. The shoppers and workers smile. Sculptural fountains cascade into streams of clear water which run through the heart of the shopping center, framed by ferns and exotic plants. The shops are filled with beautiful clothing and jewelry I can never hope to afford, but we both love to explore. Queen Teen fell in love with a Betsy Johnson handbag (shiny purple and decorated with sparkling red and gold flowers. $300!). We discovered a tea shop and sampled the most delicious Jasmine tea I've ever smelled. The Stanford Mall is so far from my own reality, visiting it is like taking a trip to Monaco.

Tuesday was fun and relaxing, which was an excellent balance to Wednesday. NOT fun and extremely boring.

Her appointment was at 10:00 am and we were seen right away by her audiologist, Anne. Queen Teen really likes her, but she doesn't like the tedium of having her hearing checked. It took an hour and a half to test Queen Teen's hearing. She dropped blocks in a box when she heard the tone, and pointed to a picture when she heard Anne say the word. After that came programming the hearing aids and then trouble shooting the FM system. The device has had intermittent problems and Anne worked hard to figure out what was causing the device to stop connecting to the hearing aids. Of course the FM worked perfectly, just like when you take your car to the shop because it keeps making a horrible sound when you idle at a sign stop, but the car works flawlessly for the mechanic. Anne say FM devices are notorious for intermittent problems, so she wants me to keep track of when and where we are when the device stops working. What's in the environment can effect the signal, especially motion detector lights and wireless networks (seeing as we have five computers hooked up to a wireless network in the house, I'm thinking that might be a big problem).

After two hours, Queen Teen slumped in her chair, looking dazed and declaring, "I'm so bored!" An hour after that Queen Teen was just dazed. She'd stopped hearing anything, her system shutting down from fatigue and stress. At 1:00 we stumbled out of the basement where Audiology is tucked away, hungry for food and fresh air. We had a nice lunch and I grabbed one more cup of tea, then we hopped on the freeway heading home, hoping to stay ahead of Bay Area rush hour traffic. We made it to Novato before finding the stop and go traffic which we sat in all the way to Santa Rosa.

I decided she needed to have fun on Wednesday too, so we stopped at Border's books. She bought two new books and two new coloring books, then we had a snack at the cafe. There was another hour of driving before we got home at 6:30.

The hearing test showed that Queen Teen's hearing is reduced in her right ear, but her hearing fluctuates so much it isn't evidence that her hearing overall is worsening. Anne programmed the hearing aids to allow for volume control to give us an option for those days when Queen Teen seems to be having a harder time than usual understanding speech. We go back to audiology in six months.

I am impressed with how hard Queen Teen worked during the hearing test and her patience overall. Three hours would have been a strain for anyone, let alone a fourteen year old girl with a neurologic disorder. When I told her how proud I was of her, she smiled and said, "Yeah, but it was too boring."

Does Anyone Know the Patron Saint of Hearing Aids?

image from Peran.org


A funny thing happened last week. Queen Teen, who has forever denounced her hearing aids as evil incarnate, started to count the days on her calender until she got her new hearing aids. She pointed at March 31st on her calender and said with a smile on her face, "This is when I get my new hearing aids."

"Um... yeah. That's the day," I replied.

"That's cool," she said.

Cool? Cool? When did wearing hearing aids become cool? It made me want to double check that this was indeed my child and not a changeling left by aliens from the planet Happiness. But no, this is my girl, my own Queen Teen, and somehow she's decided that new hearing aids will be "great!"

March 31st arrived and we drove to Stanford in Palo Alto to see the audiologist, a young Asian woman who has a knack with tricky kids. For over an hour she tested Queen Teen's hearing, with me helping by facilitating games (drop a block in the box when you hear the beep.) One test was followed by another, and then another, all looking for different aspects of Queen Teen's hearing, and an hour later Queen Teen was starting to glaze over. Her eyes drooped and she stopped paying attention to the sounds coming from the headphones. Unfortunately, we weren't done. The doctor and I prompted and encouraged Queen Teen and somehow she found the energy to keep trying for several more minutes.

The tests showed that her hearing was improved from the last time we were there (2 months ago) but was worse than the first time we came (a year ago). It does appear that Queen Teen's hearing is fading, but what it all means is still under debate. Will she lose all of her hearing, or will it reach a plateau? And why is she losing her hearing at all? Just chock it up to another part of the mystery that is Queen Teen.

The doctor put in Queen Teen's hearing aids and adjusted them so that low, soft tones would be louder. She didn't increase any of the other tones because Queen Teen is very sensitive to noise. Immediately I saw a difference. Queen Teen and I chatted about her hearing aids and her hearing and I didn't have to yell. She was alert and responsive and smiling. When we left the office, she kept the hearing aids in and I only took them out when we went to the motel and she complained they were bugging her (3 hours later!).

I decided to get a motel room and spend the night to lessen the stress on both of us (thank you student loans!). It's a 3 1/2 hour trip to Palo Alto from where we live, close enough to drive there and back in one day, but too far to drive there and back comfortably. Instead we ate dinner in our room, watched a movie, slept in late the next day and then had lunch in San Francisco, spending some quality mother/daughter time together. And she kept her hearing aids on the whole time.

So, if anyone can tell me the who the Patron Saint of Hearing Aids is, I'll be very grateful. I need light a candle and say THANK YOU.

The Low Vision Clinic in Berkeley

Last friday, Rick and I took Queen Teen to the Low Vision Clinic at UC Berkeley for an assessment. It had been five years since her last evaluation and we wanted to see if there'd been any changes. Plus, Queen Teen is eager to read and has been picking out sight words like "the," "and," and "there." She can identify items from a list by looking for the first letter of that word (M for "milk") and keeps asking "What is that word?" If there's any chance she can learn to read, then I will do everything I can to help her.

Laura Fogg, her Orientation and Mobility instructor, met us at the clinic. I invited her because Queen Teen has been less than cooperative at appointments. Even something as simple as a quick doctor's visit for itchy skin can become a tearful battle. Between adolescence and the hundreds of doctor's appointments Queen Teen has had to go through since birth, I can understand her lack of enthusiasm about ANOTHER appointment. Laura seems able to draw Queen Teen from her shell, plus she works with her at school so would have more info than I about how Queen Teen uses her vision.

As expected, Queen Teen was NOT happy to be there. She went along with the visit for a while, but as soon as it got too hard, or went too fast, she shut down and refused to lift her head. Then when the doctor tried to put glasses on Queen Teen to test lenses, Queen Teen kept shoving them off her face, once knocking the lens completely out of the frame. The doctor went too fast for Queen Teen to keep up, quickly switching from one task to the other before Queen Teen fully understood what she was supposed to do. I understood why the doctor was in such a hurry, but I wish she had taken more time to show Queen Teen what each test was and how it worked. Queen Teen is a curious person and likes to examine and question objects before they're shoved in front of her face.

There were times when Queen Teen got into the games, laughing when she stuck her finger into the hole on the contrast cards and playfully snatching the light wand during the visual fields test. She played with Laura and answered questions clearly, saying "I can't see that." I was proud of how she spoke up for herself, telling us when she could or could not see something and asking questions about what was happening. This is not a passive Multiply-Disabled child; this is a girl who is capable of understanding what is happening to her and expects us to explain WHY we're doing it.

Happily I can report Queen Teen's vision hasn't changed much in the last five years. Unlike her hearing and ataxia, her vision is stable. The doctor changed her prescription just a little to accommodate nearsightedness and astigmatism, which are actually normal changes most children experience as they grow. She's seen an opthomologist every year to check her eye health and her doctor has said it didn't appear that Queen Teen's vision had changed (her doctor is a certified Low Vision expert, so I know this woman knows what she's doing). Now we have verification from two Low Vision experts that Queen Teen's eye condition is stable and we don't expect it to worsen any time. Thank goodness!

We also talked about ways to help Queen Teen read and discussed the use of a CCTV. I'll look into getting her one for home use. Because of how bad the budget is in California, I expect a battle finding someone to pay for a CCTV, but if that's what Queen Teen needs to successfully learn to read, then I'll find a way to get her one, even if I have to hold a bake sale!