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.

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. 

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."

Queen Teen Vs. The Big Purple Ball

Queen Teen is trying to capture her greatest nemesis, namely one big purple plastic ball. The ball is light and slippery, a little smaller than a soccor ball, and it loves nothing more than to roll away out of her grasp. But Queen Teen is determined. One day, she will tame that rotten ball and when she does the ball will quake in fear and relent to her commands.

The ball had bounced off the edge of her closet door when she was trying to put it away and rolled out of her bedroom into the living room.

"Darn ball!" she yells.

The breaks of her walker go "snap-snap" when she unlocks them and it rattles loudly as she races out of her bedroom after the ball. Balancing herself with one hand on the walker, she leans over to retrieve the ball. It gently rolls at the touch of her fingertips.

"Argh!" She leans a little further and the ball rolls even more. Straightening up quickly, she pushes the walker closer to the ball where it is wedged against a chair and scoops it up in her hand. "Got it." She sets the ball on the flat seat of her walker, where it instantly rolls off, bounces against the walker's front brace, and disappears into the kitchen.

"Oh no! Darn ball!" She races after it, her walker rattling like an old bicycle on a bumpy road.

I'm watching from my seat on the couch and debating whether to get up and help her. No, I decide. I'm going to watch what happens. How long will she fight this ball before she either captures it or asks for help?

The ball stops against the edge of the wall and Queen Teen scoops it up triumphantly. "Got ya!" She once again sets it on the flat seat of her walker and once again it rolls off and bounces away.

"Argh!!!!" She's sounding more frustrated. I want to offer assistance, tell her there's no way a round ball will stay on a flat, moving surface like her walker, but I keep silent. This battle is between Queen Teen and the big purple ball.

Her eyes narrow as the ball rolls away. It bounces against the living room chair and back into the hallway toward her room. She slowly walks forward, the walker's rattle less dangerous sounding, until she spots the ball in the dim hall. "There you are!"

She carefully moves her walker as close as she can to the ball then leans over to grab it. It bounces out of her hand, but pops back when it repels off the wall. She captures it between the wheel of her walker and her hand. Very slowly she places the ball on her walker where it sits still. "There!" But as soon as she moves her walker, the ball rolls off and heads back into the living room.

I really want to step in and help, but I know she has to figure this problem out herself. She's missing the cause and effect part. My telling her the ball can't stay balanced on the flat surface of the walker's seat won't SHOW her how impossible it is. Plus, she won't believe me; she is thirteen after all.

Queen Teen studies the ball which taunts her from where it has rolled, exactly where it had been when she began chasing it. Her lips purse and her eyes narrow again, then she slowly walks forward, one rattling, stealthy step at a time. I wonder what she is thinking as she creeps up on the purple ball; what plan has she formulating?

Standing above the ball, she announces, "I'm going to get you," then she kicks the ball with her foot.

The ball rolls away from her, but this time Queen Teen grins. She dashes after it and gives it another kick in the direction of her bedroom. It takes several attempts with a few missed kicks and the ball ricocheting in the wrong direction twice before it finally rolls into her bedroom. She slams the door behind it and shouts, "Got you!"

"That ball sure was giving you trouble," I say, still watching from the couch.

She walks over and plops down beside me. "Whew. That was hard." She sighs heavily as she wipes sweat from her forehead.

"But you did it. I knew you could!" I hug her quickly.

She grins. "Yeah. I did." She looks back at the closed door of her bedroom as if thinking, "You can't escape now, big purple ball."

I imagine the ball responding, "This time. But next time, you'll never catch me."

Gravity is Most Definitely Still Working

On Thursday I was hurrying to the BART station to catch a train in time to make Fremont for my 9:00 am class. The sun was very bright as I walked directly east and the sidewalk was shaded by parked cars. I was thinking about all the homework I still had to do and the O and M skills test coming on Monday and the fact I have yet to update the Medusa's Muse website and.... BAM! I was sprawled out on the sidewalk. I had fallen into one of those large, square holes where there used to be a tree. The tree was gone, leaving a gaping trap for anyone blinded by sunshine and not watching where they were going to fall into.

I got up slowly and realized my foot hurt, but didn't seem too bad. My left knee throbbed, the palms of my hands were scraped, but I hadn't hit my head and wasn't limping. However, by the time I got off the BART train over an hour later, I was limping horribly with stabbing pain in my right foot. I made it to class, found an icepack, and spent the rest of the day long workshop (we were learning how to do vision assessments) with my foot propped up. Luckily one of my fellow students gave me a ride back to San Francisco where my car was parked at a friend's house. But I still had to drive the 2 hours back home that night, my foot and knee throbbing like crazy. Thank goodness for cruise control.

The next day, I felt every area that had made contact with the cement, namely the entire front of my body. I was bruised and aching and no amount of Tylenol could fix it. I spent the day working on my assessment report while watching Barabara Stanwyck movies, trying not to move.

If I'd been paying attention to where I was walking, I doubt I would've fallen. The hole was enormous, so regardless of the sun shining directly into my eyes, I probably would've seen it in time and avoided it. Instead, I plowed right through and ended up front down on the sidewalk.

It took falling to make me realize I am too much in my head these days. Not surprising; there's just too much to do and I feel that I'm constantly playing catch up, scrambling up a rocky hill that is collapsing under my feet. The amount of work is impossible and all needs to be done now. I made my list, distinguishing "Important" from "Unimportant," but everything is so dang IMPORTANT right now, not the least being a mom to my daughter. Because it all needs to be done, I'm not doing any of it very well. For a type A perfectionist like me, half-assed work is unacceptable.

Because I am such a perfectionist, it takes an injury to get me to slow down. I wish I'd learn to stop and breath BEFORE I fall into a gigantic hole in the sidewalk that anyone who'd been watching where they were going would've noticed. Now I'm stuck on the couch with my foot propped up, forced to sit still and pay attention to right now.

Right now I will make a pumpkin pie with my daughter, help her work on her scrap book, and practice Orientation and Mobility skills for the practicum on Monday (I wonder if I can guide someone while limping?). The rest of my homework and the edits due on my book will just have to wait. I promised my daughter we'd spend time together this weekend and I won't go back on my word. School and work will just have to be the half assed portion of the evening. My daughter comes first.

No matter how well you're coping, you still have bad days.

Today is one of those bad days. I go along for weeks, feeling competent, hopeful, cheerful and organized. I can juggle all 12 balls with an eye on the horizon and not skip a beat. Then, suddenly, a weird feeling of exhaustion will creep up from my toes until my hands go numb and I drop every single ball on the floor where they bounce around crazily until rolling out of sight. I'm stunned, overwhelmed with emotion and angst. To make it worse, I burst into tears. It feels just like when I first learned something was "wrong" with my daughter. That moment presses in on me until my heart feels too full to beat. I thought I was coping so well, I wail. What the hell is wrong with me?

Relax. Nothings wrong. You're just having a Blue Day. They happen now and then, even to the most capable and intelligent parents alive. Anything can trigger it; new shoes already being worn down at the toes, running out of hearing aid batteries, a form you forgot, a phone call from the Regional Center Case Manager. Even something simple, like more weeds in the garden, bring on the tears.

All parents have bad days, but the parents of special needs children get an extra helping of the blues. The trick is to be kind to yourself. Don't suppress your fears or grief, but don't fixate on them either. Take a deep breath, tell yourself you're okay, then do something nice for yourself. In time, you'll find all those balls you dropped and will begin to juggle again, adding one ball at a time. It might take an hour, or a week, but you will be okay.

Today is my bad day. I heard the words "trying not to give up" and wammo, I was on the floor gasping for breath (not really. Metaphorically). I used to freak out when I had a bad day and wonder if I needed more therapy or maybe medication, but over time I understood that having a bad is a normal part of being the mother of a child with disabilities. You can't be perfect and together at all times of day and night, no matter how much you'd like to. I've learned to let myself play The Sims, eat chocolate if I wish, watch a Johnny Depp dvd, take myself for a walk, or dance in the living room while listening to Fat Boy Slim. If the blues get really bad, I call a friend. That was an important step for me. I was attached to the idea that I must be strong ALL THE TIME because if I didn't keep a smile on my face everyone else would fall apart. Um... no, Terena. You may as well insist you learn to fly without an airplane as keep a smile on your face 100% of the time. Besides, you'll creep everyone out (doesn't she ever stop smiling?)

So, that being said, I'm off to crank up the music really loud and "dance away the heart-ache" as the song says. Tomorrow will more than likely be less blue.

Beginning to Let Go

The smoke in the Ukiah Valley reached "hazardous" levels, so I took my daughter to stay with her dad for a while. He lives in Davis, and yes, it was smokey there too, but nothing like Ukiah. You can see across the street clearly in Davis while in Ukiah, the view of my neighbors is dimmed by beige, fog-like smoke.

Anytime she leaves to visit her dad or anyone else for a few days, I worry. I know it's ridiculous, but I honestly believe that no one can care for her as well as I do. No one knows her, understands her, or supports her like me. When she's trying to express an idea and can't form the right words, I know intuitively what she means and can tell other's what she's saying. It used to be a great thing when she was younger, but now, I'm beginning to think this telepathy we share is no longer good for either of us. I mean, she wants to be more independent and my stepping in to help her communicate or make decisions might be hampering that. However, she does legitimately need help much of the time, and I see part of my role as her intervener. I help bring the world into focus for her, filling in the gaps of her vision and hearing by explaining what is going on around her. But how much intervention is too much?

I think I am beginning to let go, because this time when she visited her dad, I felt calm. Well, calmer than in the past. I didn't feel the need to grab the phone to "check on her." Didn't wonder every hour what they were all doing. Was she eating? Brushing her teeth? Did her dad remember her medication? Was she able to tell him what she wants? It helped that I was competing in the 24 hour play festival this past weekend so was too busy much of the time to worry about her. But when the competition was done, I didn't call her dad to see how things were going.

She is growing up, pushing me away, trying out her own words and ideas, without me in the middle, and I think I'm finally beginning to let her. Beginning. It will be a while before I completely let go. But really, does any parent?

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.