Queen Teen vs. the new stool

Queen Teen has a stool in her room which came with her vanity table. It's lovely, but it's also too unstable for her. She keeps falling off of it when she tries to pivot to reach her shelves. So two weeks ago, she and I went to Kohls to use a gift card and buy her a new stool. We picked out a round, padded ottoman, the kind you can put things inside.

 In the store she liked it. When we got home, she hated it.

For thirty minutes, we discussed the merits of the new stool. How sturdy, comfy, and easy it is to sit on. How she can pivot without falling off. How she can store things inside of it. She agreed to give it a try.

The next day, I heard loud banging from her room. No yelling, just a loud "thump!" "bang." "draaaaaaaaaaaaaaag." "bang!" "thump." "draaaaaaaaaaaaaaaaaaaaaaaaaaaaaag."

Walking into the hallway to see what the hell my daughter was doing, I almost tripped over the new stool, now sitting rejected in the middle of the hall. I peeked inside her room and saw Queen Teen slowly and carefully shoving her old stool back to its spot next to the vanity table.  Gripping the wall, she leaned over on wobbly legs and pushed the stool as hard as she could. It moved about two inches. She readjusted her position then pushed the stool again. Over and over, she shoved that stool across her bedroom until at last it reached the vanity table. Then she sat down triumphantly, worn out from the effort, but smiling.

I ducked back into the hall before she saw me, not wanting to interrupt her moment of victory. I glared at the banished stool, then I carried it to my room.

To say my daughter is stubborn is like saying water is wet.

O.K. then, we'll add the new stool to the list of other helpful items you hate, like your glasses, hearing aids, the new way you're being taught to sit and stand (to prevent falls) and the rain boots that would keep your feet dry if you'd wear them.

But I also felt pride watching my daughter push that vanity stool across her room. She was panting with the effort, fighting her ataxia and hypotonia through sheer will power. Remembering the prediction from doctors that this girl wouldn't walk by the time she was 16, I watched her fight that stool all the way across her bedroom. I had to fight my own need to help her; she didn't call me for help. She did it herself and I wasn't about to take that moment from her, despite the fear urging me to grab her when she wobbled each time she had to adjust her hand on the wall.

She drives me absolutely nuts, but you gotta admit, Queen Teen is the toughest chick in town.

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.

Sweet 16

On Thursday, May 26, my baby girl turns sixteen. Sixteen! And I have to say, so far there's nothing sweet about sixteen. For the last week and a half, she has been moody, rude, short-tempered, and ornery. She gives orders like Princess Know-it-all and seems genuinely shocked when I refuse to obey.

I like it.

She's behaving like any other typical teenaged, American girl, picking fights with her mother and believing with all her heart that the world revolves around her every whim.

The world no longer revolves around her mother (me).

I miss that little girl who used to cling to my legs with her tiny arms and giggle when I tried to walk. I miss the child who loved to sneak into my room and try on my hats. I miss the days when she and I would each wear one of her tiaras and have a tea party with her stuffed bear and Strawberry Shortcake doll. That little girl is long gone; now I live with a young woman who no longer thinks that I am a perfect symbol of womanhood and the greatest role model in the entire universe.

I'm glad. I want her to grow up, be independent, find her own path and her own identity. I want her to become her own person, separate from me. It makes me sad to feel her push me away, but I also feel excited and happy for her.

It's annoying though. Twice I've had to reprimand her for being rude: that was just today. And in the last week I've thought very seriously about packing her up and sending her to her dad's.

Why does growing up have to be so hard on the parents?

Happy birthday my darling, difficult, fabulous girl. You are wonderful.

Is being a Princess contagious?

Queen Teen was in a bad mood when she got home from school.

"Mom! You forgot to put the Cinderella pen in my school bag."

"No, you forgot to put the Cinderella pen in your school bag."

"Well... I didn't even know where it was!"

"It's on the TV stand right next to your sunglasses and hat."

"How am I supposed to know?"

"Because it's sitting right there."

"Well I didn't see it!"

"You can bring it tomorrow."

"Well, you should have put it in my bag!"

I held up my hands. "Stop yelling at me."

She glared, looked away, and mumbled, "Well... she should have."

I left the room, counting quickly, "1,2,3,4..."

Two hours later, after her snack and movie, she came into the kitchen where I was preparing dinner and said, "You left my cup in the living room, Mom."

"No, I think you left your cup in the living room," I said.

She stopped and glared at me. "It doesn't go there."

"Really? I had no idea." I kept stirring my pot of pasta.

She just kept looking at me. Sarcasm is lost on her.

Then she released the breaks of her walker with a loud "snap-snap" and turned around. While she walked out of the kitchen she said, "Well, that's not where it goes."

A little while later, Queen Teen yelled from her room, "Mom!"

I walked in and saw her sitting on the floor. "Yeah?"

"I can't find my book."

"Which book?"

"The book I was reading."

"I don't know which book that was."

"The Rugrats one."

Queen Teen has thirty Rugrats books. "Which one?" I asked again.

"The one I was reading!"

"Honey, I don't know which one you were reading."

"Hmph!" She crossed her arms and turned away from me.

I sighed, and started counting again, "1,2,3,4..."

After dinner, she got ready for her bath. I was taking her hair out of the ponies, when she snapped, "Mom! We washed my hair yesterday!"

"I know. I'm pulling your hair up higher so it doesn't get wet."

"You don't have to do that!"

"Fine!" I had only one of her ponies out so I left the other one in and started the water running.

"Mom, what are you doing?"

"Starting your bath."

"But you have to fix my hair."

I took a deep breath, counted to 5, turned around and stood very close to her. "You forgot to say please."

"Well... I don't...."

"You forgot to say please," I repeated.

She looked down and  mumbled, "Please."

"What did you say?"

"Please."

"OK." I took out the remaining pony-tail and then pulled her hair up into a bun.

She looked at me and smiled, "Thank you."

"You're welcome."

After her bath I helped her dress, then tucked her in for bed.

"My pillow isn't high enough."

I stood up and looked at her with my arms crossed.

"Will you please fix my pillow," she said sweetly.


Is being a Princess contagious, because since we came home from Disneyland she seems to think she should be wearing the royal jewels and giving orders. 

Disneyland!!!!!

We're going to Disneyland again!!!!! Hee hee hee hee hee!!!!!!!

I think I'm more excited than Queen Teen, and definitely more excited than Rick. He's calling it "Disneyhell" and is packing extra Valium in preparation for the crowds. But he's a trooper, a great dad, and is going to Disneyhell to help me and to see the look on his darling daughter's face when she sees Cinderella again.

Because that is a moment no one should miss.

Queen Teen, however, isn't so thrilled that Rick is coming. She's afraid he's going to embarrass her in front of Cinderella. What if he moons Mickey, or farts in front of Princess Aurora? She's convinced he's going to do something silly and then she'll never be able to show her face in Disneyland again.

It's traumatic when you're almost 16 and your dad takes it as a personal challenge to embarrass you.

Rick has promised to be on his best behavior, so Queen Teen has agreed that he can hang out with us, although she may make him walk five steps behind, just in case he farts or something. I told her I would personally smack him in the head if he does something rude. Rick just grinned.

I think I'll ditch them both and go ride Pirates of the Caribbean a few hundred times.

She's also not too happy about having to share me. I think she's feeling neglected because I've been so slammed with school this last year and haven't been able to spend as much time with her. That's changed now, but she still gets jealous when I spend time with Rick or friends. That girl isn't happy unless I'm glued to her side watching Sponge Bob all day. Once we get there, it will be better. I think she's going to enjoy a real family vacation for a change. I know I am. We haven't all been on a trip together since she was about 10 years old.

Cheers everyone! I'll be in Disneyland for the next few days, eating Gluten Free pizza and listening to my daughter sing while I push her traveling throne through Fantasy Land. And kicking Rick now and then. ;-)

Queen Teen's Knight of the Bus

Queen Teen has a new champion, a young man who rides the bus with her every morning and afternoon. I'll call him J. On one particular morning, this young man came to her rescue and has continued to be her protector every single morning as they ride the bus to school.

The school bus is crowded now. Thanks to budget cuts and increased student enrollment, the "little buses" are packed two per seat. These buses were built in the early 1980's when kids were decidedly... smaller. Nowadays, only one kid per seat can sit comfortably, two per seat has one kid scrunched against the window and the other hanging off the edge. Of course, none of the kids want to give up the coveted, smashed against the glass, window seat, and by the time Queen Teen gets on the bus there are only aisle seats left. Like the trooper she is, she sat on the edge of the chair two mornings in a row, clinging to the seat back in front of her for dear life, terrified for the 15 minutes she sits on that bus.

Enter her Knight in Shining Armor.

On this morning, Queen Teen climbed onto the bus and stared at the aisle seat, then announced, "I don't like sitting there. I'm scared." There was a pause as the bus driver and I looked at each other, then the bus driver said, "J. Would you mind letting Queen Teen sit next to you by the window?"

J's smile was as big as if we'd told him he gets to drive the bus. He jumped up from his seat and waved at Queen Teen. She walked to him and then squeezed past him onto the seat. I buckled her in and J sat beside her, still grinning.

"Thank you, J," I said.

He kept grinning.

"He likes her," one of the girls on the bus said, and then giggled.

"Yes, I know. They're friends," I said.

"No, he liiiiiikes,  likes her." She giggled again and another girl joined her.

I looked at J. He kept on grinning at me. "That's nice," I said.

And now, every morning, as soon as Queen Teen enters the bus, J jumps up from his seat and gives her the window side. He rides the rest of the route with half of his butt hanging off the seat and his feet planted firmly to keep from falling off, a smile on his face the whole time. Queen Teen is as oblivious as any Royal Princess should be. Of course he offered her his seat, she's a princess!

Now that the girls on the bus have pointed it out, it's pretty obvious that J likes Queen Teen. I wonder how long it will take for Queen Teen to notice, too. I guess as far as potential romances go, this is a sweet beginning.

(but he'd better keep his hands to himself or else!)

But it's Wednesday! Laura comes on Thursday!

Me - "I'm going to pick you up from school today and then we're going on a walk with Laura and your friend Eden."

Queen Teen - (scowl)

Me - "What?"

QT - "I don't think I like that."

Me - "Why?"

QT - "I just don't."

Me- "You don't want me to pick you up from school?"

QT - "I don't know."

Me - "You don't want to go on a walk with Laura and Eden?"

QT "No."

Me - "Why? It will be fun."

QT - "No it won't."

Me- "But why? You like going out with Laura and you haven't seen Eden in a long time."

QT - "Because I only go out with Laura on Thursday."

Me - "You can go out with her twice this week. Today and tomorrow, on Thursday."

QT - "No."

Me - "No?"

QT - "Today is Wednesday. I don't go out with Laura on Wednesday. I only go out with Laura on Thursday."

Me - "This is an extra special, fun trip with your friend."

QT - "I don't think I like that."

Me - "Well... I'm still going to pick you up from school today."

QT - (deeper scowl) - "Hmph!"

Me - (under my breath) "This is going to be fun."

Who decided school should start this early in the moring?

 (image from Real Simple)

It's 7:25 AM and I'm drinking my second cup of coffee, finally starting to wake up. Queen Teen caught the bus for school at 6:50 and is right now heading to her class after the first bell. To catch the bus on time, she has to get up at 5:15. 5:15! That means I have to get up at 5:10. 5:10 in the morning!!!!!!!!!!

Who the hell decided high school will start at 7:30?! Haven't they read the studies showing clear evidence that teens need more sleep and don't function well before 9 AM? Want to raise test scores? Stop trying to teach a teenager anything before 9 AM!

Maybe some kids can hop out of bed at 6:30 to make it to school on time, but we have to get up this early because it takes a long time to get Queen Teen ready for school. She wakes up slowly, eats breakfast while half asleep (who can eat at 5:30?), brushes her teeth and washes her face, then slowly gets dressed. Between her groggy movements and ataxia, achieving all of these tasks in an hour and a half can be challenging. Plus, I'm barely awake myself, so my organizational skills and patience are sluggish. By 6:45, Queen Teen is awake and dressed and standing by the front door watching for the bus. When it comes she announces excitedly, "Mom! The bus is here." I help her to the bus while the driver loads her wheelchair and then her walker. After buckling her in her seat, I give her a kiss goodbye on the cheek, then stand on the sidewalk to wave as the bus pulls away.

At 7:00 AM, Queen Teen is on her way to school, while I am fighting against the urge to go back to bed. My night owl body begs for more sleep, telling me I shouldn't be awake before 8, but I force her to stay away from bed and won't allow a nap on the couch. The day has started and I need to train my body to get used to getting up early in the morning, even though I know it's futile. I'll never get used to it, never feel alert before 8, but eventually I'll stop feeling like I'm hung-over and stupid.

Again, I ask, who decided school should start so early? Don't you know anything about teenagers? How do the teachers feel about getting up this early to teach grumpy, sleepy adolescents who barely pay attention when they're awake. Hasn't anything taught in the first two periods of school been negated by starting so early? And what about us poor parents who have to get these sleepy, grumpy, miserable teens out of bed and ready for school on time?

I know, I know... getting up this early helps parents who have to be at work by 8 (when I start my internship in three weeks I'll probably be happy, if sleepy). And I know teachers probably like getting off work earlier than later. And I also know districts are short on buses so the buses have to come early to pick up all those kids on one route. And I'm lucky there's a bus at all. But none of those supposedly good reasons mean Queen Teen and I have to like it. Nor does it mean that starting school this early is good for the kids.

Do you know the way to teen-aged land?

I keep finding toys in the hallway: stuffed animals and baby doll clothes, Berenstain Bear books, Rugrats figurines, a Cinderella Barbie and Baby Cinderella in a matching blue dress, Matchbox cars, bouncy balls, a little plastic Fairy Godmother. Queen Teen tosses out three to four things every day, declaring the item as "boring," and throwing it into the hall. Yes, I try to tell her throwing things into the hallway is not okay, but it seems like this is her way of rebelling against childhood. I will not play with this toy anymore and I will throw them into the hall! So there!

I have several piles of old books and toys in my bedroom now which are in my way, but I'm making sure she's really done with them before I send them to Goodwill. Are you SURE you're tired of playing with the mini-van that goes to your doll house? Tired of reading all the Baby Honey books? Over the years she's declared herself "DONE" with a toy, only to have a melt-down when I told her I gave it away. "But I wanted that!" she'd cry. "You told me you didn't want it anymore." "No I didn't!" I've learned my lesson, so now I wait. But for how long?

Queen Teen is trying very hard to grow up, which is exciting to watch, but also frustrating. Neither of us knows how to do this. She doesn't have any teen-age role models to emulate, and I have to say I'm actually happy she isn't copying the 8th graders at her school. She still thinks boys are "ucky," and cell phones are mysterious. She likes clothes and shopping, but there's only so much we can buy. She spends a lot of time looking at her bracelet collection and necklaces, trying them on, admiring herself in the mirror, taking them off, then yelling for me to help her untangle them. She hates makeup.

Her room is getting emptier and we still haven't found anything to replace all the items she's tossing. What will she do with her time when she no longer wants to play with toys?

Deaf-blind children do not learn incidentally. They need to be SHOWN what is going on around them. They need to be taught how to be social, what to wear, what to say, how to interact with people. She isn't picking up on the subtle clues that other kids do that show them what growing up is like. All she knows is that her old toys and books don't interest her any more, but she has no idea how to take the next step.

I need ideas, people. How do I show my 14 year old daughter how to be a teenager?

Queen Teen reaches burn out. Now what?

A few days ago, Queen Teen walked into my room and announced, "I don't wear my glasses anymore."

I'm used to these types of proclamations, I mean, "Queen Teen" is more than just a nickname. It's a way of life.

"You don't?" I said.

"Nope. They don't help me so I don't know why I gotta wear them."

"Because your teacher asked you to. She says they seem to help when you're working on your computer."

"Well, they don't. So I'm not gonna wear them anymore." Before I could formulate a response that would, A-encourage her to wear them, and B- remind her that she needs to do what her teacher tells her, she moved on to a new topic. "And my hearing aids don't do nothing either, so I don't know why I gotta wear them."

Pick your battles, I thought. At this stage in the game, the hearing aids are more important. "You're hearing aids do help. You seem able to hear me better with them on."

"No they don't. They just bug me."

"I'm sorry about that, sweetie. We'll go to the audiologist again and she can fix them for you."

Queen Teen shrugged. "It don't matter. I don't need to wear them. And I don't know why no body can do nothing about my ataxia. I hate my ataxia, and nobody can fix me."

"I know. It's really frustrating."

"Yeah." She leaned forward and shouted, "I wish somebody could make my ataxia just go away!"

I gave her a big hug and said, "Me too, baby."

"It's what I wish for. But I guess some wishes are too big and can never come true."

Biting my lip, I forced myself not to cry. What the hell can I say? Everything she's saying is true. Her glasses only help a little, her hearing aids barely help at all, and her ataxia is worse the older she gets. She used to be able to walk without using a walker but now she has to use the walker constantly, even in the house. She used to do her exercises religiously, but now has given up on the idea that strength training will make her better. I encourage and bribe her to keep going, but she gives it a half hearted attempt, lazily doing sit-ups and quitting before she's really taxed.

Queen Teen is burned out, worn out, frustrated and depressed. Nothing has made anything better, not the surgery, the knee braces, the exercises or the therapy. Not the glasses or the hearing aids, not the amino-acids or the walker. She's lost that stubborn gleam in her eye that embraced each new challenge with excitement. Of course I'll get stronger, she used to believe, as she did 20 sit ups. Now she doesn't care.

What can I do to help her? Even an adult would feel this despondent, so how is a 14 year old child supposed to cope? When you realize that all your efforts won't change anything, that things are exactly what they are and you must live with them, how do you keep moving forward? I hit that place a couple of years ago and spent months in a depression so deep I was afraid I might not drag myself out. Eventually I did, because Queen Teen needed me to. What will help Queen Teen learn to live with herself and bring that wonderful fire back into her eyes?

You can't have ice cream for lunch!

so sayeth Queen Teen. Nor can you have chocolate, fruit loops, caramel corn or sweet tarts. In fact, you shouldn't have these things ever, but now and then is okay, but just for a snack, and not very much.

My daughter really absorbed the "eat healthy" message her schools and I have taught her. I blame Blues Clues and that "Healthy snacks" song. I know I'm lucky. My daughter has never whined for candy while waiting in line at the supermarket, and even when I offer her a sweet, she'll only eat half. When given a plate full of cookies and then told, "help yourself," Queen Teen will eat one, maybe two, then set the plate down and walk away. "You can have the rest."

She eats her vegetables

Since she is under weight by about twenty pounds, she is allowed to eat anything she wants. Of course it helps that her favorite snacks are fish crackers, cheese and bananas. I beg her to have a milkshake, but she'll rarely take it. She just isn't that interested in sweets.

One night while she and I were coloring together, Queen Teen set down her crayon and said, "Can I tell you something?

"Of course." I set down my own crayon and gave her my full attention.

She sighed then leaned forward, staring at me so intensely I wondered if she was going to tell me she had a boyfriend. "When you're not here, Rick gives me too much chocolate."

"I see." I looked down to hide the smile that was sabotaging my serious expression.

"It's a big problem." She sighed again very dramatically, then picked up her crayon and started to color again.

In Queen Teen's world, everything is broken down into compartments. There is good and bad, black and white, yes and no, healthy food and not-healthy food. There are foods you eat for breakfast, foods you eat for lunch, and foods you eat for dinner. This is how she makes sense of the world. Because of her poor hearing and eyesight, it's hard enough for her to figure out the tangible world, let alone all those exceptions to everything. There is no gray area and ice cream is not lunch. This is her own adaptation and I try to respect it. For a while I tried to teach her about life's exceptions and prepare her for the variables and gray areas that are invariably a part of life, but it created too much confusion for her, so I stopped. Instead I go along with her rules about the way things are. Eventually she'll figure out that life doesn't fit into perfect little categories and sometimes it's perfectly fine to eat ice cream for lunch. And dinner. And even breakfast.

At last she said something other than "I don't know!"

For many, many, many, many, MANY years, Queen Teen's favorite sentence has been, "I don't know." Ask her anything and she will almost instantly respond with, "I don't know." Do you want ice cream or a cookie? I don't know. Would you like to watch a movie or read a book? I don't know. Would like me to poke you with a sharp stick? I don't know.

She is capable of saying something else; I've heard her many times. If she really wants something she'll speak up in a loud, clear voice. She'll tell you her opinions, her ideas, her desires and what she doesn't like.

But usually, her response to any question or suggestion is "I don't know."

The other day, I reached the limit of my patience.

"Would you like a cheese quesadilla for lunch?" I asked.

"I don't know."

"Do you want something else?"

"I don't know."

"Are you hungry?"

"I don't know."

"I don't know! I don't know! Can you say anything other than I don't know?"

"I don't know." She shrugged.

"Fine! I guess when you're hungry you'll tell me what you want for lunch. Or I guess I can just cook you anything I want and you'll eat it because you don't care!"

We stared at each other for several moments, me with my arms crossed and she chewing on her bottom lip.

Then she said, "I'm not sure."

I burst out laughing.

She grinned.

I guess "I'm not sure" is more accurate than "I don't know."

Clothes pile up when you stop outgrowing them.

Queen Teen doesn't outgrow her clothes quickly anymore, therefore we don't cull her clothes every six months. Instead, shirts and pants had accumulated to the point where they fell out of her cupboard every time she opened the doors. She couldn't find a specific shirt she wanted to wear and she couldn't keep the clothes organized.

It was time to get rid of clothes.

We spent an hour going through all of her clothing, including the dresses and jackets jammed into her tiny closet. I let her decide what she wanted to keep. The decision was no longer based on if she can still wear the item, it was based on if she was SICK of the item.

This process struck me as another sign my little girl is no longer a little girl. She doesn't outgrow clothes anymore, she changes her mind. Her tastes in fashion change, not her inseam or waist line. With a wave of her hand and scowl she tossed shirts and pants and dresses I thought were cute. Nope. She refused to keep anything white or too pink. I bit my lip when she held up a lovely dress she'd only worn twice (but owned for two years) and said, "Ugh. I'm tired of this." Toss. She filled two grocery bags full of clothing to take to Goodwill.

Her clothes are now tidy and her closet is less cramped. With a grin she inspected the shelves where her clothes are folded neatly (a cupboard is easier for her to manage than a dresser). "Much better," she said.

You'll freeze your little butt off

Queen Teen chooses her own clothes to wear to school, as she should. A 14 year old girl knows what she wants, even if she won't tell you what it is. For the most part she has a good eye for fashion and color, and she refuses to wear anything too revealing. No hoochy-mama, MTV inspired outfits in her closet, thank goodness. I only have to step in occasionally, like when she tried to wear an orange t-shirt with purple polka dot pants. She wears a lot of interesting outfits, but that one I couldn't let her leave the house in.

I also step in when it comes to weather. One morning about three weeks ago, she insisted on wearing her Levi mini-skirt, even though it was 50 degrees that morning and wasn't expected to get warmer than 75. I told her to wear leggings which she could take off later in the afternoon, but she refused.

"Fine. But your little butt is going to freeze on those bus seats," I said.

She triumphantly got dressed and then walked out to the bus. When she sat down on that cold, plastic bus seat her eyes widened in surprise. Wrapping her arms around her, she tried to smile at me, but I knew she was freezing.

Told you!

This morning is even cooler and it's supposed to stay cool and cloudy all day. I saw the clothes she had picked out for herself (a blue top with glittery butterflies and a pair of checked shorts) and switched the shorts for a pair of jeans. When Queen Teen saw this, she was not pleased.

"I already picked out my clothes."

"I see, and they are very nice, but it's cold this morning and you need long pants."

"No I don't."

Refusing to take the bait, I said, "Open the front door and see for yourself."

She glanced out the window and saw the sun wasn't up yet, then stood. "Snap-snap" went the breaks on her walker as she released them and stomped out of her bedroom. I followed and helped her open the front door. Cold air rushed into the room, making us both shiver.

Queen Teen stood in that cold air for a moment, then she looked at me. "I need to wear long pants today."

"Good idea," I said.

More Proof Queen Teen is a Teen

Queen Teen and I went to Starbucks for a treat and I bought her Steamed Vanilla Milk, one of her favorites. As we were sitting at the table drinking our treats, she spilled a little milk on her shirt when she tried to take a drink. No problem. We wiped it up with a napkin and she tried again. More milk spilled down her chin and on her shirt.

"Why do I keep doing that?" she said, grabbing a napkin and rubbing her chin with it.

"You're not lining up you mouth with the hole in the lid," I answered.

"Yes I am."

"No, you're not. I can see it. You're tipping the cup to take a drink but the hole is off to the side of your mouth, so the milk spills."

"Well how can I know? I can't see the hole."

"Use your tongue to find it." I stuck out my tongue and showed her how I put my tongue into the hole to see if it's lined up with my mouth.

She laughed. "That's silly, Mom."

"Maybe, but it works."

"I like my way." She lifted her cup and stared at the lid carefully trying to see the hole. then she tipped it to her lips. Once again drops of milk dripped down her chin.

"How's that working for you?" I asked.

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."

"What?"

"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."

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.

"She's 13"

Yesterday I took Queen Teen to Mervyn's for a little back-to-school shopping. At first she was cheerful and silly, giggling at the stuffed puppies and feeling proud of herself every time she navigated around an obstacle in the aisles. And then, without warning or provocation, her face set in a determined frown and her eyes focused downward. Nothing I did or said made any difference.

"Look at this cute shirt! It's even red, your favorite. Do you like it?"

"I don't know," Queen Teen responded without looking at the shirt.

I held it under her nose. "It feels soft. Would you like to wear it to school?"

"I don't know."

"Maybe I should just buy you uniforms again. You looked cute in your school uniform."

"I don't know."

"Really? You don't know. Then I SHOULD buy a uniform because then you won't have to decide what to wear at all. Yep, I think a blue uniform would be good."

She scowled at me. Well, at least she made eye contact for a moment.

We managed to buy a pair of pants and two shirts, then went to the register to pay. Queen Teen barely cracked a smile when one of her friends from elementary school stopped to say hi. They're both going to the same Jr High this year and she was shopping for school clothes with her mom too.

"Did you have fun this summer?" Queen Teen's friend asked.

Queen Teen looked at her for a moment then stared at her feet again. She shrugged.

I said, "She's just getting over a cold, so she may be feeling tired."

"I had a cold too. No fun," her friend replied. Then she dashed off to catch up with her mom. My daughter didn't notice she was gone.

Great! She has maybe two real friends and she ignores them when they say hello. Wonderful! She'll be sitting by herself every lunch for sure!

The woman at the register asked me, "Is she feeling okay?"

I shrugged. "Who knows. She's 13."

"Ah.... I see." The woman gave me a knowing smiled and nodded. "I know all about 13."

Every time I tell someone that I get the same response; that completely understanding, 13 is rough you poor thing hang in there it will get better in a few years I'm so glad it's not me, smile. Even people who don't have children give me that look because we ALL know what 13 is like: morose, temperamental, and bitter. Saying "she's 13" is like saying "she has a head ache," or "she has a tummy ache." Of course, we all say, nodding with a sympathetic smile. She'll get over it in maybe... three or five years. Poor dear.

When I told my hubby what happened he asked, "What set her off?"

"She's just 13."

He sighed. "How long does that go on?"

Learning to Walk Takes a lot of Falling Down

My daughter was born with a physical impairment which makes moving around tricky, so you can imagine how hard it was for her to learn to walk. But she did, slowly, painfully, and with hope and determination, she found a way to make her wobbly legs and ataxic body stand up. Pulling up to stand took over a year. Cruising around from chair to book case to table took several more months. And then, at age three, she took that first step out into the living room, away from the protective stability of the couch, where she weaved as if trying to walk on a ship in the middle of a storm before falling smack on her butt.

She cried and screamed with frustration, then crawled back to the couch, pulled herself to standing, and tried walking again. One, two, three, four steps... then WHAM, back on the floor. It took six months before she could walk across the living room, still weaving back and forth like a sailor, but eventually finding her own sense of balance. Triumphantly she stood on the other side of the room as she looked back to see how far she'd travelled.

Despite her best efforts, she still fell down. ALOT. That's when we started calling it a "Gravity Check."

"Gravity Check! It's still working," I said while I helped her stand back up and regain her balance. She'd laugh, and try to walk again.

Eventually she started to say it to herself when she fell on the floor. "Gabbidy Chick." This would make her giggle which helped with the frustration and encouraged her to try again.

Every transition in a child's life is a Gravity Check for parents. We see our tiny babies grow into toddlers, then children, lose their first baby tooth, go to Kindergarten, graduate from elementary school and become teens. When your child has a disability, those Gravity Checks are a little stronger. The natural fear all parents deal with is amplified and it's a struggle to tame that panic every time we let our children out of our sight. Who will keep her safe? Who will help her stand back up when she falls? Will she be happy?

My daughter is now thirteen and about to enter Jr. High. This Gravity Check is a rough one. She may be ready to grow up and be a teenager, but I'm not. I'm scared, tired, frustrated, and proud all at once. I'm happy to see how strong and beautiful she has become, how funny and intelligent, but I'm nervous about the perils of 7th grade and the social problems she may have to cope with. Can we do this?

Then I remember how she fought to learn to walk, despite how many times we were told by "experts" that she never would. Oh yeah? Just watch me, doc, she says as she races away with her walker. Sure she stumbles around like a drunken sailor, but she's the most beautiful drunken sailor you've ever seen.

I started this blog to connect with other parents who are raising a child with a disability, especially teenagers, and I'd love to hear your comments.