Friday, December 1, 2017

Act Your Age...Doctor's Orders

Hannah had a doctor's appointment the other day. It was just an annual check-up; nothing special. About the only thing of note is that it was three or four years overdue. I think there's a maximum number of medical appointments a body can handle. After years of daily doctor, specialist, hospital, therapist and agency appointments (not to mention my years working in the hospital), I hit my limit more than a decade ago. Therefore, short of my kids missing a limb, I avoid making appointments like the plague.

I got a call from the doctor's office about a month ago. They were apologetic, but they said they had to see Hannah because they've been writing prescriptions for her monthly medical supplies, and technically (or by law, or whatever) they're supposed to see her once per year in order to do that...not every five years. "FINE," I sighed, "I'll bring her in."

I like the doctor well enough. It's just the hassle of hefting both Hannah and her wheelchair into the car...and hefting them back out again, then back in again, then back out again - that encourages me to look for excuses to delay making appointments. There's also dealing with her self-abusive behaviors while we wait for the good doctor (and there's always a wait), because she's uncomfortable (or stressed or bored or irritated or overwhelmed - who knows; probably all of the above). That gets old fast. As do the strange looks we get when she's doing it.

There's also a rather irrational irritation that gets me every time. I totally understand the push to treat people with disabilities with dignity and respect. That's a no-brainer. It's how dignity and respect are interpreted that get to me. And I recognize I'm the one being unreasonable here, so I certainly don't call people out or show my irritation, but I can't seem to help it. Here's the thing. Hannah is 22. She's the size of an seven or eight-year-old. Her hands and feet are tiny; she wears an infant size 8 shoe. She clearly doesn't look 22. She certainly doesn't act it, either. While I don't think there's any way to estimate her cognitive age with 100% accuracy, after a lifetime of observation, I estimate it to be at the level of a six to nine-month-old.

I realize, of course, that people passing her in the hallway of a doctor's office, lab techs and random nurses assigned to gathering her vital signs are not going to know this. It's safer to assume she understands small talk and social niceties and that she would appreciate being talked to like you would talk to a 22-year-old (or even a 7 or 8-year-old) than to guess that all of that is beyond her capability. I suppose asking first how much she can understand before interacting with her would be looked at like asking a woman if she's pregnant. You just don't do it.

I don't know why, but for some reason, this grates on me. Maybe it's the reminder of just how delayed (or nearly non-existent) her development is. I think, though, it's the socially awkward feeling I'm left with, thinking the whole time someone is talking to her, "You realize she can't answer you, right? You know she won't do do what you've just requested, right? You know she can't understand your warning that you're going to lift her shirt and listen to her heart and lungs, don't you? You get that if she's going to be startled, embarrassed or made otherwise uncomfortable by her shirt being lifted (which she won't) that saying those words means nothing to her, right?" I never say any of this out loud, of course. I just smile uncomfortably and "answer for her" when Hannah's lack of responses just gets too awkward.

I thought a lot about this subject when the state was trying to get Hannah a job. Don't even get me started on that ridiculousness; if you're up for a good laugh, you can read a bit about it in my post, Your Daughter Should Be A Marijuana Farmer. The thing is, if you want to treat a person with cognitive delay with respect, is it really respectful to treat him/her according to his/her chronological age? I don't think so. If an adult is mentally an infant, I think it's more respectful to treat him/her as an infant. To treat him/her as an adult is essentially saying, "I'm going to interact with you in a way that would be appropriate for the age you should be acting."

The persistent push to treat someone always by their chronological age isn't just limited to cognitive ability. During yesterday's appointment the doctor looked over the information on his computer screen and said, "Soooo...[sigh]...Hannah is due for a pap smear..."

I looked over at Hannah...sitting on the her diapers...playing with her rattle. You're kidding me, right? "Uh-huh..."

"As you know," he explained further, "the pap tests for cervical cancer, which is actually sexually transmitted."

Seriously. You're pulling my leg, right? "Uh-huh..."

"Which...she's not very likely to get..."

Gee, ya THINK?! "Right."

"Actually, I see here she got the immunization, too, which further reduces her chances..."

To LESS than zero; we're dealing in the NEGATIVE numbers now. "Right."

"And...I don't even know if they make a speculum that small..."

Oh. My. God. This is ridiculous. He's actually considering this lunacy! "Look, quite frankly, the only way Hannah is going to get cervical cancer is if she's raped, and if that's the case, concern over her dying from cervical cancer is going to be really, REALLY low on my list of things to worry about. Okay? We're not going to do a pap test."

I don't think I've ever seen a doctor shudder and pale before. I nearly got whiplash watching him spin uncomfortably back to his computer screen, presumably to type in a decisive "No" on the line that said "pap smear".

Do I HAVE to do this again next year? Maybe if I start thinking now I can come up with a good excuse to miss another appointment...

Wednesday, November 1, 2017

Sneak Peak

In August we began to really crack down on screen time for the kids, which of course led to the panicked question/plea, "But...WHAT could you ever possibly expect me to do NOW?!"

Well, since Maddie has demonstrated extreme talent in the telling of tall tales, I suggested she write a book. Surprisingly, she actually took me seriously. She developed a story idea, decided on a moral of the story, picked a genre (Middle Grade, which tend to be 30-45,000 words in length), did character development and wrote up an outline. She wanted to write out the chapters long-hand for me to type up. That didn't work, because A) I have a hard time reading her writing and B) between school, piano lessons and being on two gymnastics teams, she's under some pretty strict time constraints. Instead, she records herself on my phone, telling the story, one chapter at a time, then I play the role of living/breathing voice recognition software/editor.

It's actually coming along pretty well. We're nearly at the half-way point in our writing, with a goal of being done by the end of the year and published in the spring. The most pleasant surprise - aside from the simple fact that the project has actually gone anywhere, is how much it has brought us together. Car trips to the gym, piano lessons and the bus stop that in the past may have consisted of her playing on her iPod and me listening to the radio are now spent discussing the pros and cons of adding a male character, how a certain conversation between characters might go, tweaks to the outline, or cover design.

Of course, the conversations leave plenty of work for me in the role as editor. I posted on Facebook the other day a recent exchange.

Me: So they're in the garden. How do you want to describe the garden?

Maddie: It's the most beautifulest place LIT-ER-AL-LY! Like...Mother Nature, HERSELF...for REALZ!

Me: Okay...suuurrre...let me just smooth that out a bit for you...

There's a great side effect of the project, though. The story is about a sixth grade girl (write what you know, right?), so there's a wonderful blending between discussion of the book and discussion of what she's experiencing in her own life. For any parent looking for a fun, productive project with their kid, I highly recommend considering it!

So...with no further delay, here's a sneak peak of Maddie's work in progress (followed by a quick blurb):


Chapter I


“Ugh! Ah! …Ow!” D.J. rubbed her throbbing head.

“Great. A perfect beginning to this perfect day.”

D.J. sighed with frustration. This was the second time she had fallen out of this bed. It was smaller than her old bed. Just like this room was smaller than her old room and this house was smaller than her old house.

Somehow, she had felt smaller since the move, but she couldn't figure out how that could be when the new house and everything in it seemed to be a miniature version of her old home. Dad said she’d get used to all the changes soon, but D.J. wasn’t so sure. There was no time to worry about it now, though. A quick look at her clock told D.J. it was time to get up and face the day she had been dreading since she first learned they were moving.

Brushing her long, sandy-blonde hair out of her eyes, she took a determined breath and picked herself up off the floor. Rubbing her aching hip, she walked over to her dresser and debated on what to wear. She had set out her favorite blue dress with sunny-yellow tulips, but that was when she was feeling optimistic and outgoing. Now she longed to just blend into the background until the wretched day was done. She grabbed her most comfortable pair of jeans and a mud-brown t-shirt and hopped into a comfy pair of socks as she made her way to the kitchen.

“Morning, sunshine!” Dad greeted her from the kitchen table, where he was eating an English muffin.

“Hey, Dad,” D.J. responded with as much enthusiasm as she could muster. She wasn’t particularly hungry, but she knew she’d get an earful if she tried to skip breakfast, so she grabbed herself a bagel. Not wanting to take the time to prepare it the way she normally liked her bagels (toasted with cream cheese), she plopped herself down in a chair and ripped a bite off. Not a good plan; it was hard to chew and it sucked all the moisture out of her mouth. Setting the remainder of the offending food strategically behind the napkin holder, she hoped Dad wouldn’t notice if she just left it. She casually walked over to the refrigerator and got herself a glass of orange juice. She remained standing next to the counter, too nerved up to sit back down.

“Excited for the day?” Dad quizzed.

“Ummm…sure?” D.J. tried to sound positive, but before she could stop them, some of her honest feelings broke through. “I don’t know,” she sighed, more truthfully, “I’m worried that I just won’t fit in. How could I? Everything is different here. Besides, middle school is new to all sixth graders, but all of these kids have had months to get to know each other now. I’ll be the new, weird kid that everyone will point and laugh at.”

“Nonsense,” Dad assured. “Remember when Hannah Stephenson started at your old school? I know that was in the middle of the year because I had just come in from shoveling snow when you told me about her. Did kids point at her and think she was weird?”

“Of course not; Hannah is awesome!” D.J. was frustrated, not wanting to see the comparison her father was making. This felt like a completely different situation.

“Well, sweetheart, you are awesome, too,” Dad praised D.J. as he walked over to her and pulled her into a hug, “and something tells me that the kids here are smart enough that they’ll see that right away.”

D.J. felt like she was acting like a spoiled, bratty toddler to be so disagreeable about going to her new school. She knew she had to go, but everything in her wanted to just stay right where she was, in the safety and comfort of her dad’s strong arms. She didn’t want to argue, but she couldn’t help but make one last attempt to avoid the inevitable. “But why do I have to go today? It’s April Fool’s Day, Dad! Everyone will look at me like I’m a big joke and whisper about what a fool I am when I don’t know where I’m going or what I’m doing. Can’t I wait and start tomorrow…or next week?”

D.J. felt the rumble of Dad’s quiet chuckle against her cheek that rested against his chest. “Nice try, kiddo,” he teased, “You will be going to school today. I know you’re worried and nervous, but I also know how brave and strong you are. I have all the faith that you’re going to do fine. Before I know it, I’m sure I’ll have to start turning kids away from play dates and sleepovers because the line will be too long.”

D.J. rolled her eyes. Her dad’s confidence felt good, but she seriously doubted he had any idea what he was talking about. Dad offered a final squeeze of support, and turned to put his breakfast plate in the sink on his way to finish getting ready for work. He stopped and turned at the doorway of the kitchen. “Go ahead and finish getting ready, but don’t think I missed your little disappearing bagel trick. If you don’t want to eat that, fine, but I want you to get something for breakfast.”

“Fine,” D.J. responded on a defeated sigh, “I’ll try a little yogurt or something.”

“That’s my girl!” Dad cheered over his shoulder on the way to his bedroom.

After choking down a small bowl of yogurt, D.J. made her way to the bathroom to brush her teeth and run a comb through her hair. Studying her reflection in the mirror, she realized that she would have no chance at all of making new friends if she didn’t find a way to wipe the surly, sourpuss look off her face. She knew just who could help her with that. This was a job for Fern.

She quickly made her way back to her room and threw herself heavily into the bean bag chair by her window. “Well, Fern, this is it. It is time for me to face my DOOM! I know, I know… Drama queen much? It’s just…I just don’t know how to do this! I’ve never been “the new girl” before. …But I get why we needed to move here. It’s easier for Dad; he doesn’t have to drive nearly as far to work here. He’s always been there for me, so I suppose the least I can do is try this for him. Okay…I’m gonna do it. Wish me luck. And have a good day…at least that way one of us will!”

D.J. flashed a quick smirk at her favorite houseplant as she got up and crossed the room to gather her backpack, grab a sweater, and throw her shoes on. Fern had been there for her for as long as she could remember, and had helped her through a lot of tough days – especially when her mom was sick. She always listened patiently and never judged, so D.J. felt completely comfortable being honest when she talked to her, which always seemed to lighten the weight that sat on her shoulders.

“Okay, Dad, I’m headed out,” D.J. yelled from the front door.

“Hold up! You’re not getting away without a last hug goodbye, young lady!” Dad scolded playfully, as he approached her down the hall. “Are you sure you don’t want me to walk you to the bus stop?”

“Thanks, Dad, but I think I’ve got this.” D.J. shuddered as she imagined how it would look to have her dad standing at the bus stop with her when the bus rolled up. She pictured him doing something utterly embarrassing, like kissing and hugging her goodbye and yelling, “Have a good day, honey!” as the bus pulled away. It was a horrifying scenario.

“Alright,” Dad conceded as he pulled her into a side hug and kissed the top of her head. 

“Smile when you can today and just be yourself. I know you don’t think I know what I’m talking about here, but trust me, sweetheart, everything will work out fine. Maybe we can even celebrate your success tonight with a nice dinner out.”

“What? We hardly ever eat out!”

“Ah; that’s a benefit of living in town now, kiddo,” Dad reminded her as he opened the door. 

“There are lots of restaurants close by. Some of them even deliver, so we could order out if you don’t feel like a night on the town.”

“Thanks, Dad; that sounds fun! Have a good day and I’ll see you this afternoon.” D.J. smiled, truly feeling excited for the first time all morning. She took a deep breath and took her first step out the door.

D.J. traversed the short path of stones that led to the sidewalk, then turned to her left as she surveyed her new neighborhood. She quickly passed the walkway to the house that made the other half of their duplex. Their old house had stood by itself and the closest neighbor had been about a half mile away, so it seemed strange to D.J. that they were now sharing a house with a whole other family. She didn’t mind, really; it was just another new and different thing to get used to.

She continued toward the corner where the bus was due to stop in a few minutes. She liked her street. There was a low hum of background noise that was new to her, like occasional jets passing overhead and cars working their way through busier areas of town. There was closer background noises, too. She heard a garbage truck that was probably a few streets down and a dog barking from a few doors down. But there were sounds she was familiar with, that helped to make her feel more at home – birds chirping their welcome to the spring weather and a light breeze whispering through the branches of the trees lining the street.

The trees were one of her favorite features of her new neighborhood. There were two long, magnificent rows of maple trees running the entire length of her street. They were big enough that she imagined their grand canopies might nearly touch in the middle of the road when they reached their full bloom of summer. For now, their leaves were just beginning to peek out after a long winter’s rest, showing off their fresh, bright and brilliantly green beauty. She spied what looked like small bird nests in two of the trees. She made a mental note to remember where they were so she might catch sight of the hatchlings later in the spring when the more mature leaves would better camouflage their locations.

Movement at the end of the street brought her attention back to her destination. There were four or five kids gathering at the bus stop. Adrenaline rushed through her veins at the sight of them, and for a split second she contemplated running back home. She pushed herself forward, though, focusing on putting one foot in front of another, until she was standing near the other kids. She avoided eye contact, feigning interest in anything that would keep her gaze elsewhere – the cracks in the sidewalk, the daffodils in the flower bed on the corner lot, the window boxes on the house closest to the stop and the scuff on the toe of her right shoe. The bus couldn’t get there fast enough; she didn’t know how much longer she could elude the eyes of the other students without seeming rude.

There were two boys in the group. They looked older; D.J. assumed they were seventh or eighth graders. They were laughing and roughhousing with one another, and didn’t appear to notice D.J. at all. Of the three girls waiting for the bus, two stood together, whispering back and forth. Out of the corner of her eye D.J. caught them skeptically assessing her up and down. Soon she heard them giggling and she suddenly regretted her wardrobe choice and wished she had tried harder to convince her dad that today wasn’t a good day to start school. She wanted to crawl under a rock and hide.

The third girl stood quietly to her side, and finally curiosity had D.J. sneaking a quick peek at her. She had long, shiny, black hair and a cute colorful outfit. She was slightly shorter than D.J., which was saying something, because D.J. was far from tall. The girl was lovely, but what made her beautiful was the warm smile she offered D.J. when she caught D.J.’s eye.

Just then the bus came to a stop in front of them and everyone began climbing on. D.J. started to make her way toward the back of the bus out of habit. She found it was generally warmer in the back than it was in the front, although she guessed that wouldn’t be as important here, where it didn’t tend to get so cold in the winter as it did back in her old town. Black-haired girl slid on her seat toward the window, subtly patted the seat next to her and flashed D.J. another winning smile. D.J. smiled back and sat down next to her.

“Hi. I’m May Chan,” black-haired girl introduced herself, “You must be new to our school?”

“Hi. Yeah. I’m D.J. Daniels. Nice to meet you, and thanks for sharing your seat with me,” D.J. returned with a shy half grin.

“Nice to meet you, too! What grade are you in? Where are you from? Where do you live now?” May began shooting out rapid-fire questions.

“Uh…I’m in sixth grade, I’m from North Bend, and we’re in the sixth house down on the left side of Grant Street…on the left side of the house? It’s a duplex.” D.J. wondered if that was how people usually described their address when they shared a house with another family.

“Oh, so you’re really close, then; I’m right around the corner on Fir Street! Well, howdy, neighbor!” May laughed. D.J. couldn’t help but smile along with her, and the tension she didn’t realize she held in her shoulders started to melt away.

“I’m a little nervous, because my old school was a lot smaller than yours,” D.J. confessed. I’m worried I’m going to be lost all day…probably all week.”

“Nah. My first day was a little confusing, but I got the hang of it pretty fast. You’re gonna love Kirkland Heights Middle School; I just know it,” May assured her with confidence.
May’s attention shot to the front of the bus and she excitedly grabbed D.J.’s arm. “Oh! Here’s Payton’s stop,” she announced with a little bounce in the seat, “I can’t wait for you to meet her!”

D.J. followed May’s line of sight as new kids began filing onto the bus. One tall, thin girl with auburn hair in a sporty bob cut made immediate eye contact with May. D.J. assumed it was Payton, and guessing from the way Payton knew right where to find May, D.J. figured this was their usual seat. She wondered, nervously, if she had taken the spot Payton usually did and if that would make Payton mad.

Payton calmly got in the seat in front of May and D.J., pulled her backpack off and turned toward them. “Hey,” she greeted, looking at D.J. with a blank expression, “Who are you?”
Once again D.J. found herself longing for a rock to hide under, interpreting Payton’s dry tone as irritated or displeased. May either didn’t notice it or didn’t care. She dove into introductions with enthusiasm and glee, “Payton Parker, this is D.J. Daniels, my new neighbor, D.J., this is Payton, one of my best friends! And don’t let her scare you away, D.J.; she’s a sweetheart who just doesn’t always think about how things will sound she shoots them out of her mouth.”

“Hey! What are you talking about? All I did was ask who she was!” Payton defended herself. 

“So, you’re new, huh?” she directed her attention back to D.J., “Sixth grade?”

D.J. nodded, signaling Payton had guessed correctly.

“Do you know your class schedule yet?” Payton quizzed further.

“No, not yet,” D.J. admitted. This was one of the things she was nervous about. It was bad enough not knowing where all the classes were; she didn’t even know what classes she’d be looking for!

“No worries,” Payton comforted her, “We’ll get you to the office and get you pointed in the right direction.”

D.J. breathed a sigh of relief. It soothed her to feel like she was going into this nightmare of a day with a few allies. That warm feeling was nearly washed away and replaced with a wave of panic, however, when she looked out the window to find they were pulling up to the school. It was a monstrosity of a structure that intimidated D.J. by itself, but when she imagined the number of people that building housed, she suddenly regretted eating yogurt for breakfast. She wasn’t so sure she wasn’t going to see it traveling in the opposite direction soon. But May flashed her excited and supportive smile and grabbed her hand as they got up to leave the bus, so D.J. was able to find her calm center again.


D.J. is concerned about starting at a new school in the middle of the school year. She's sure she won't have anything in common with her classmates. She makes three friends right away, but her concerns are validated. Her friends are all serious gamers and she's...a gardener. She fears if she asks them to spend time with her - technology free - that they'll refuse and she'll no longer be part of the group. D.J. gets some great advice from a very unlikely source. She decides to take a chance and stand up for herself. Will her new friendships blossom or will screen time lure away her best buds?

Sunday, October 1, 2017

Lessons Learned

This month has been an emotional one for me, comprised of lessons learned, memories relived and lingering questions.

Lesson learned:

Being the mom of an athlete isn't all rainbows and moonbeams.

Maddie (10) has been doing gymnastics since she was two. She has always been a gym rat; taking every opportunity to bounce, flip and balance. I'm a bona fide gym mom. I don't just drop her off and use the 3 hours of practice to get my errands run. I sit in the stands and live the experience with her, day in and day out. I am constantly amazed as I watch her (and her teammates') growth and development, and I thoroughly enjoy the experience.

I have always said my only goal was to offer Maddie the opportunity to have fun, stay fit, and learn to be a successful, well-rounded person - that I'm not the "live-vicariously-through-my-kid-type", the "scary-stage-mom-type", the "obnoxious-sideline-mom-type" or the "my-kid-WILL-be-an-Olympic-and/or-professional-athlete-type". That's easy enough to proclaim, but the path to that goal is not always crystal clear. How do you respond when your athlete has a personality conflict with a coach? What do you say when your athlete doesn't meet a goal or level she expected to reach (and - more importantly - a goal or level her friends did reach)? And what do you do when your child is feeling like a failure as an athlete?

I'll tell you what you do - especially if all that is happening at the same time. You hit your mattress every night in the form of a drained, frustrated emotional puddle after spending hours carefully piecing her fragile self esteem back together...just to have it blown apart at the next practice with the drama de jour.

You hate seeing your child distressed in any way, but do you encourage her to quit? Do you cheer her on to get up, shake it off, and move forward? Is that really in her best interest, or is the real motivation that you aren't ready to let go of the sport (or the thousands of dollars you've already plunked down in advance for the season...but that's another story)? Is this just a rough patch or is this a sign that it's time to move on to other exciting new ventures?

Maddie made it easier on me. In one of our [many...many] heart-to-heart's over the past few weeks, I attempted to demonstrate I was hearing her by saying, "I can understand why you may be thinking about walking away from gymnastics when you're feeling this way, but-"

She interrupted me with a curt, "Wait - who said anything about QUITTING?!"

I'm still confident that I'm holding true to my initial intentions and goals for Maddie. After some long, difficult discussions, it is clear that what we're doing is for her, not me. What is also clear, however, is the reminder that growth and development isn't all physical. The journey to a "fit, well-rounded" adult by way of sport is littered with mental and emotional trials that are sometimes even more daunting than the physical challenges.

Memories relived:

James fainted earlier this month. I know, I know..."Say it isn't so!!!" The thing is, James is one of those who has a "pseudo-seizure" when he passes out. I've been told I do the same thing, actually, so maybe it's hereditary. Anyway, when he went down and started convulsing, I was the perfect picture of calm, cool and collected. The nurse in the room, on the other hand, was decidedly more alarmed (as he was not aware of James' fainting antics...note to self - alert medical personnel of fun little tid-bits like that in the future).

What took me by surprise was what happened the next day. I woke up an emotional and nervous wreck. I couldn't place it, but everything felt off and dark and suffocating. Then it dawned on me. It was PTSD. Even though I knew that what James had experienced was non life-threatening and benign, I was reminded of Hannah's big, bad seizure days enough that I had to work over about a two-day period to tamp down that panic and dread that was consuming me. Huh...who knew?

With that knowledge, I'm treading carefully into the next few weeks. Emily went in for an endocrinology appointment earlier in the month. You may remember that a year ago she was diagnosed with Graves Disease. The good news is that her thyroid levels are finally back in the normal range. The bad news is that her heart rate was clocked at 120 (normal resting heart rate is 60's to 70's). I feel so bad for the kid. Her heart rate has hardly dropped into the two-digit range for over a year now; I can't imagine how drained she must always feel and how her heart must just constantly feel like it's thumping out of her chest.

We had been blaming the increased heart rate (tachycardia) on the Graves Disease, but we can no longer do that. I took her to her general practitioner a few weeks after the endocrinology appointment, and not only was her heart rate still sky high, but her blood pressure was well above normal, too. She has an appointment with cardiology next week. It's all a little too deja vous, for my taste (taking me squarely back to Hannah's heart failure days), but what are ya gonna do? It is what it is, and we'll hope for the best while trying to keep the past in the past this time around.

Lingering question:

When you get a kitten in hopes he will be a great hunter, how do you train him how to go about his job? Loki is about 9 months old now and he's exceeding expectation with his predatory instinct. He prowls, he stalks, he pounces, he plays. ...And he plays, and he plays, and he plays. Occasionally he kills, but mainly he plays.

Unfortunately, his favorite playground is our living room. Furthermore, his favorite hunting time is about 4 A.M., and for the last week he has performed like clockwork. Every morning this week - without exception, - he has caught a mouse outside our bedroom window by the shed. He plays [with his obnoxious squeaky toy] until he hears me rouse from bed, then he proudly prances his way back in through the doggy door to flip, bat, and bang said toy around for a few hours...until he looses it under the piano or behind the couch. He always picks back up on the game later in the day, but he doesn't always seem interested in rewarding himself with a meal after his play time.

After praising his hunting prowess on Monday, I held the door open for him, and he took his toy back outside. He didn't seem to grasp my message that these toys are outdoor toys, because playtime was back in session in the living room at 4:30 A.M. on Tuesday. We found the remains of that toy on Thursday; it had apparently died of either fear or internal injury, curled up behind the desk. I think he has eaten the others he has brought in, but I haven't really tested that theory by pulling the couch away from the wall to see what's under it.

What I did learn was that when you're talking on your cell phone as you walk through the grocery store parking lot, you may want to lower your voice when you're agreeing with your daughter that it's hard to watch and listen to the marathon torture sessions by saying [with a laugh], "I know! I just wish he'd hurry up and die, already!"

Friday, September 1, 2017

Grief & Denial

I admitted many patients when I worked as a registered nurse at Seattle Children's Hospital. I always worked 11 PM to 7 AM, so it was a given that anyone I admitted was going to be exhausted and short of temper, and likely also frightened and overwhelmed.

I had been told that doctors had recently diagnosed one particular incoming teen girl with multiple sclerosis and she was being admitted for further work-up. When I went through the intake questionnaire with the patient's mother, I expected fatigue, irritation and nervousness. What I got was complete and utter denial of her daughter's condition. The mom was looking forward to our doctors "fixing her girl up" and going back home to the life they had left behind.

On the surface it seemed crazy that this person couldn't see what was right in front of her. Practically overnight her daughter had gone from being active in school sports to having severe vision issues and being wheelchair-bound. I didn't argue with the mom, though. I remembered all too clearly my level of denial at various point in Hannah's history. I'm sure someone could have looked at me with the same level of disbelief, for instance, when I didn't really acknowledge Hannah's heart defects (all seven of them!) when the pediatric cardiologist explained them to me.

It has been my experience that some form and level of denial is a constant, fluid part of being a special needs parent. It protects us from being overwhelmed as we try to adjust to massive changes in our lives, expectations, and future plans. In the beginning I denied/shut out the significance of Hannah's heart failure. These days I deny/shut out the significance of being her caregiver for the rest of her life or mine; whichever ends first. This mom of the teen with multiple sclerosis would come to terms with their new reality eventually, as she could handle it; there was no point in me trying to jam it down her throat at two in the morning.

As I mentioned in With Angel's Wings, a sister emotion to denial is grief. Part of accepting the reality of Hannah's diagnosis was mourning the loss of the [healthy, "normal"] child I thought I had. I've learned over the years that there really is no end to that grief, either. Just as I would expect with the actual loss of a loved one, over the years I have had good days and bad days, but I still grieve the loss of what I thought our reality would be when I gave birth to my child. There are many more good days now than there were back in the beginning, but grief has remained a part of me since the day of diagnosis.

I recently learned that I can relate to a population I never would have thought I had anything in common with. Every summer we try to get together with friends from college, Allen and Tabatha. They have two children, Nathan and Abigail, who are roughly the same age as James and Maddie. Two years ago (when Abigail was about 10), Tabatha confided that Abby had expressed some feelings of confusion and/or discomfort with her identity. Abby had told Tabatha she didn't feel like her female peers; that she didn't have anything in common with them. I suggested finding a counselor for her, but I honestly didn't think too much of it beyond that.

Last summer there was a scheduling conflict, so we weren't able to meet up with Allen and Tabatha; therefore, this summer we were especially anxious to see them. Within moments of our hugs of greeting and exclamations that it had been too long, Tabatha informed us that Abby identifies as male and prefers to be addressed as Alex. Man, you miss just one summer visit...!

Speaking in gross generalizations and stereotypes, there are kids you look at when they're as young as toddlers and think, "Oh yeah...that kid is gay." Then there's others who, when you find out they're gay [many years later, typically as older teens or adults] you think, "Huh. Didn't see that coming." While I haven't had as much exposure to trans individuals, I'm assuming the same is true with them - there are those who are "obvious", and those who aren't. This was a "didn't see that coming" moment for me. Abby had always been a relatively quiet girl, not overly feminine, I suppose, but certainly not at all masculine - she had long, beautiful hair, often wore sun dresses when we saw her...not anyone I ever would have guessed identified as a male. That being said, I had no problem accepting it. The only challenge was remembering to address this person as "Alex", "he" and "him" when years of practice prompted me to say "Abby", "she" and "her".

I was particularly proud of James and Maddie. They just responded to Tabatha's announcement with, "Huh. Okay. Wanna go swimming, Alex?" Later Maddie did ask me why Abby was now Alex. I told her that some people are born one gender on the outside but feel like a different gender on the inside, so they want to be treated as the gender on the inside. She said, "Oh. Can I be a boy, too, then?" I said, "Do you want to be?" She thought for a second and said, "Actually, nah. I'm happy with who I am." Then she ran off to play again.

All of that acceptance is easy enough for friends. It's a very different experience for a family. Until now I categorized families of LGBT individuals in two groups - accepting and not accepting. Allen and Tabitha can easily be placed in the accepting category; they are very supportive of Alex. That doesn't make it easy, though. I now know that accepting the "theory" of LGBT is just the first step of the process.

There are the little details to consider - those that you don't think about unless you're faced with them. For instance, it's one thing for the school to be accepting and accommodating of your trans child, but at what point do you officially re-register your child from "Abby" to "Alex"? That step, in and of itself, signals another "layer" of acceptance. It says, "This isn't me just tolerating this "phase" you're going through and calling you by a different name; this is me understanding that "Alex" is who you are." Furthermore, how do you even go about making the official name change? Do you just change the school records? What about medical records, etc.?

Then there are bigger issues to grapple with, like the decision to agree to hormone treatments. If you do, there's the overwhelming sense of "no going back"...but at the same time, doctors suggest beginning them before puberty, because it's much easier for a trans person to prevent an adam's apple or breasts than to try to get rid of them later. I don't envy Allan and Tabitha in decisions like that at all!

Another big issue, though, is allowing yourself to mourn the loss of the child you thought you had while simultaneously accepting the "new child" you are being presented with. Tabitha is in deep mourning over the loss of her daughter, but appears to feel somewhat uncomfortable expressing it, for fear people will misconstrue it as lack of acceptance of Alex. This is something I can completely relate to. I still fear the judgement I anticipate, should I openly talk about mourning the loss of the [healthy, "normal"] child I once thought I had - and Hannah is 22 years old now! The sense of loss never went away, but neither has my fear of speaking about it.

I know our friends will get through this time of transition (no pun intended) with grace; they are an incredible family. The whole situation just demonstrates to me that I have more in common with the LGBT community than I ever would have guessed. and learn!

Tuesday, August 1, 2017

You're Kidding Me...Right?!

Here's the latest example of how a poorly-worded policy can create real-life headaches and an obscene level of inequity. This letter was sent out earlier this week. I'll be sure to share any response I get.

Dear Senator Murray,

I am writing to ask you to please look into changing a policy in the Veteran's Administration. I realize you are a very busy woman and I recognize the fact that the current climate in the senate has likely greatly increased your workload. I am hopeful, however, the language I am asking you to review/revise would be a quick and easy fix.

My daughter, Hannah, will turn 22 in a few days. She was born with a rare genetic disorder, Wolf-Hirschorn Syndrome. She is, therefore, non-verbal, non-ambulatory, incontinent, and exclusively G-tube fed. She weighs 50 pounds, has a seizure disorder, and has the cognitive ability of a 6 to 9-month-old. When she turned 18 she was quickly approved for Supplemental Security Income (SSI) and I was quickly awarded full guardianship.

A month or two after Hannah's first SSI payment, I received a letter from Social Security stating $94 would be taken both retroactively from her first checks and from forthcoming checks because of the money Hannah was getting from the Veteran's Administration.

After having a good, hearty laugh, as we pictured Hannah having a secret life in the military and earning veteran status, I called the local Social Security office to alert them to their [obvious] mistake.

They said, "Hmmm...prove to us she's not getting money from the VA."

I called the VA and suffered through a conversation with a gentleman who clearly didn't want to speak to me (a lowly civilian). He did eventually agree, however, to send me a letter stating that Hannah does not receive any funds from the VA.

I sent that letter on to Social Security, and they paid back, retroactively, what they had taken out of Hannah's SSI checks. But the next month I received another letter telling me $94 would be deducted from Hannah's checks due to what she was getting from the VA.

About every two months I would have to call Social Security, referring them to the letter from the VA that was in Hannah's file. But after a year they said, "Hmmm...this letter is a year old. She could have potentially become a veteran within the past year and started getting money from them. You'll have to prove to us [again] that Hannah is getting no money from the VA."

Another borderline hostile conversation with another gentleman at the VA later, I had another letter of proof. I was sure - this time around - to provide my ex-husband's Social Security number. He's Hannah's biological father, he is a veteran, and he was my number one suspect for what I was convinced was some sort of fraud. Another two years of hassles with Social Security told me that the fraud was never investigated.

Last month I made my annual call to the VA for a letter of proof. A woman answered the phone...and listened to me. What she told me, though, had my chin hitting the floor. She said that a veteran with a "helpless child" (apparently that's a technical term in the military) gets an extra monthly stipend (my guess is that it's in the amount of $94), and that the stipend continues for as long as the helpless child is alive.

I said, "But he lives 3000 miles away in New Hampshire. He has never had custody of Hannah. He hasn't even laid eyes on her since she was four months old! He paid child support until she was 18, but it was $155/month [total] for both Hannah and her sister. I can't imagine that included $94 from the VA. Now that Hannah is an adult, I'm her legal guardian and she has absolutely zero ties to him. How is it that he gets money in her name?"

She said, "He simply gets the stipend for having a helpless child. There is no requirement for custody, cohabitation, or guardianship, and there is no requirement for the veteran to relinquish that stipend to the helpless child." ex gets an extra $94/month for being little more than a sperm donor more than 20 years ago, and I get a monthly headache with Social Security as a bonus to the responsibility of being a full-time caregiver for the rest of Hannah's life or mine - whichever ends first.

Life isn't fair. That is a lesson I've learned very well over the years. That being said, this policy feels like the government kicking me when I'm down. I ask that language be added to the rules about this "extra stipend for helpless children" that would require the funds to actually go to the helpless child in question. Either that or the stipend should be discontinued altogether, since the needs of "helpless children" are already covered by SSI and Medicaid.

Thank you so much for your time and consideration. Take care and continue fighting the good fight for us in "the other Washington"!

Your Supportive Constituent,                      
Stephanie Collins