Hurry Up and Wait

After a long wait, I was able to meet with the ENT specialist yesterday. I received a mix of good and bad news.

An audiologist performed a second hearing test, confirming that the ear nerve is functioning properly but my hearing loss has increased. I'm down to nearly 50% loss across the board, and 90% loss in upper ranges. 

Next my ear was checked out via microscope. What was a cholesteatoma growth behind my ear drum has now spread and pushed its way over and down through the top of my ear canal, creating a cyst in my outer ear. This change has occurred in just the last six weeks, which means surgery needs to happen as soon as possible to prevent further growth.

Unfortunately, the doctor's schedule us booked out eight more weeks. I've been put on the writing list for cancelations, so I'll keep my fingers crossed for an earlier date.

The good news is that the recovery time is shorter than I expected. With a busy schedule of events already on my calendar for September and October, I've been worried about how I could shuffle things. Luckily I'll only be down for about five days I stead of the two weeks I expected. 

The surgeon also said that he's confident he can restore most of my hearing with plastic implants to replace/repair any inner ear bones that have been damaged. Because of this information, and inspire of the rest, I'm feeling better after my appointment. 

The next few weeks will still be a struggle, both managing symptoms and keeping up on my schedule. Thankfully everyone I'm working with has been extremely supportive, so I'm sure things will fall together smoothly. 

Let the count down begin...

Hear Today, Gone Tomorrow

It's been almost six months now since I began losing the hearing in my left ear. I joined a local choral group in March and shortly afterward developed what I assumed was a sinus infection. My ears and throat glands have always been the first to suffer when I'm under the weather so this seemed like a normal Spring event for me. 

As the weeks past and the rest of my symptoms cleared, I continued to feel as if there were cotton in my left ear. Voices became muffled, I found myself turning my head to hear. By late May, when our choral group performed, my ear was beginning to hurt. Thus commenced my first doctors appointment in six years, and second in ten. 

The fact that I called a doctor is big for me. I've had a long history of odd medical problems that usually result in lots of appointments, much confusion, and rarely any answers. I've learned to document my symptoms for several months, do as much research as possible, and then contact a specialist when the treatment is outside of any homeopathic options. This is precisely how I went about having my gallbladder removed six years ago. I knew the problem, presented it to the doctor, and it was taken care of. 

This time I was truly naive of the severity of my problem. I honestly thought it was just an ear infection. But after my family doctor couldn't find anything wrong and I was referred to an ENT, it was clear this wouldn't be simple. The ENT was also confused, not seeing an obvious problem and not initially seeing that my hearing loss was a concern. Then he said a phrase I've heard far too often. 'Oh, I've read about this!' He quickly ordered a CT scan and full audiology report. 

As the audiology test proceeded, the doctor's attitude slowly shifted from casual and joking to very serious and cautious in his choice of words. Twice he stopped himself from saying the word 'surgery' and by the end he would no longer make eye contact. I had completely lost just over 25% of the hearing in the left ear, but in higher ranges it dropped to a 75% loss. 

The scan went quickly and easily enough, but when the results came in I had to hear them from a nurse who didn't have any explanations or answers to my questions. The scan showed a cholesteatoma growing around the bones in my middle ear. The doctor himself wouldn't return my calls or schedule an appointment to clarify things. I was referred to another specialist, three hours away. 

The wait to see the specialist was six weeks, sometimes referred to as an eternity. During that time the pain increased, there has been intermittent bleeding in my ear canal, constant pressure as if someone's fist is being pushed into my ear, and I have now developed vertigo that is near constant. Don't ask me to walk any straight lines for a while. My hearing has worsened and my voice echoes in my head oddly when I speak.

I've had to stop singing completely because it just hurts too much. This alone has probably been the hardest part for me to deal with. Music is like air for me.

Today I finally see the specialist, who is expected to run his own tests and then schedule surgery. The only option I'm aware of is cutting behind my ear and removing the cholesteatoma. Because it spreads and essentially eats through bone and tissue, it is expected that the bones of my middle ear are greatly damaged. My hearing is unlikely to be restored. 

I'm a realist, very aware of what the outcome of today's appointment is likely to be. I've had six weeks to prepare myself, so at this point I only hope that we can move forward quickly to surgery. Quickly toward recovery. 

Bad Joke Tuesday

So there's an insurance adjuster, a neurologist, a Russian sales manager, an optometrist, and an 18th century Austrian composer. No really, it's not a bad joke -that's my Tuesday. 

Hoping that the first few on the list lead to some answers. Answers such as 

Why is the toilet flooding the house? 

Should we give up and build an outhouse?

Why does my child keep having full body twitch fits and trouble walking?

Is it diagnosis A, B, or X? What test is next?

Has the computer system been fixed? Do I have a contract? 

Just another Tuesday... wishing I could add a magician and a chef to the list!

 

Distant Cousins Who Live Distantly

I often discuss how certain experiences can bring otherwise strangers together, sometimes closer than family. This is true of my military friends, now scattered around the world. We have a bond, a survival experience, that is unbreakable and incomprehensible to anyone that hasn't lived some thing similar.

My Autism family is much the same. We've been sent on a journey many will never understand, never have to walk. A journey that can sometimes feel lonely and out of our control. Finding those connections with other families on the same path, whether down the street or another country, can instantly make that weight of the journey lighter.

In seeking answers and support, Facebook is the go to gathering place, and thus I found myself in a group of moms from around the world facing my same daily struggles. After a few weeks I began noticing another mom frequently commenting, offering suggestions, that seemed to have children closer to the age of mine. Teens instead of toddlers. Then I realized we shared a maiden name, a name with an uncommon spelling.

And so I reached out to this woman three states away whom I'd never spoken directly to. We did searches, and found our connection beyond just Autism and the coincidence that we both have T-shirt businesses. Sixteen generations back, in a small village in England, our great-grandfathers were brothers.

Two years later we share a sarcastic sense of humor, cheer each other on during moments of chaos. We share triumphs and pains. We share a name, genetics, a history, and a journey. She's my distant cousin who lives distantly but helps daily . A reminder that life's adventure really is all relative.

Thirty One

There's a card game, called Thirty One. My husband loves it, but he never wins. It was one of the first things he taught me after we were married, even before my indoctrination into Star Wars. He didn't realize, and still somehow doesn't believe, that I'm great at card games. At least card games with face cards, Rook is a whole different story. 

It is a simple game, everyone only needs three cards. The goal is to have the total number equal Thirty One or have three of a kind. Nearly every hand he magically deals me the cards I need to win or the final card for my set is at the top of the draw pile. I notoriously continue to draw and discard without entering the cards into my hand just to let him have a few rounds to possibly gain a winning hand. But it rarely happens.

He just asked me to play and I suggested he play with the kids instead. So I'm listening as he teaches our 15 and 12 year old boys how to play. And our younger son is catching the loopholes in my husband's directions. Jokers are wild? Then I say this one is thirty one!

My poor husband... nearly twenty years and now I'm having to teach the kids how to let him win.

Where There is Water...

...there is usually even more water. If it is connected to a pipe, it has probably flooded my home. In the last five years we've enured water damage from leaking toilets (that have flooded the room below them), exterior faucets that have frozen and poured water inside, sinks, water heaters, air conditioning units, etc. 

We've seen everything from full spray from a faucet-less sink to a foot of standing water in the basement. From the ceiling crashing down from water weight to parts of a toilet dropping into our kitchen. 

We even had one home where not a single window was properly sealed so water poured in every time it rained... and we lived near Seattle, where it rains a lot.

For us, the sound of dripping is one of the first signs of Spring.

In high school Home Ec class, I was paired up with a group of other kids as a "family."  Our family spun a wheel and drew cards from a jar to determine our life's triumphs and disasters. Two guesses what type of disaster we drew several variations of... yep, floods. Come to think of it, I believe I took the class in Spring. 

In the Beginning

August 1974- July 1975

 

 My parents had gone to rival high schools in central Washington state before meeting as performers at the 1974 World's Fair in Spokane, WA. I'm sure there's an 'I come from circus people' joke in here somewhere. The World's Fair has only been held in the US again once since then, in New Orleans 1984.

They dated for mere weeks before marrying that November and moving into the student housing at Eastern Washington University while my dad continued his schooling. The day after their wedding my mom announced she was pregnant, and just shy of nine months later I proved her right.

My twenty year old mother had her hair in braids during delivery making her seem even younger and convincing the nurses that she was a teen mom planning to give up her baby. Thus it was hours before she could convince them to let her hold me. 

I was named after, wait for it... my mom's high school boyfriend's wife. Yes, you read that right. But since my dad has brothers name Mike and Mark, my sister was named Marcia to make it appear we'd been named after our uncles. What my parents didn't realize is that Mark had been named after grandpa's old girlfriend Marcia. 

Many years and a dozen moves between 5 cities later I would become close friends in high school with two other girls born at that same hospital that same weekend. Fast forward another fifteen years and ten moves- I discover that another new friend was the daughter of the woman I'd been named for!

I've always found it interesting how the world brings people together, how much more connected we are than we ever realize.

More Answers, More Questions

Two nights ago I had nightmares that my son collapsed from his tremors. From tremors... When I woke up I realized we haven't used the word 'tremor' in a few years. We've been referring to his recent episodes as 'seizure like' or 'Tourette's explosions.' But 7yrs ago, at the age of 11, on his list of diagnostics just below Asperger's and Tourette's is the word Tremors....

He's had 3 more episodes in the last 2 weeks, he had a doctor appointment last week and we've been referred to a Neurologist but everyone seems confused. I KNOW these dreams were my push to search for help in the right direction. Just like fifteen years ago I KNEW something was wrong with Geoff's skull.

I didn't sleep much, was awake for good at 4am and started searching... First I came across MS info that seems close but not quite. Then I saw Parkinson's and I just knew. Reading through the symptoms it was hard not to cry. Out of 10, 8 are a solid fit and the other 2 have occurred just not as consistently. At the same time, I feel relieved?? It's like the sun came out when I saw the list of symptoms. Such a twisted combination of known and unknown, relief and fear.

I finally said something to Doug last night as the kids were getting ready for bed. My husband, who is the fact checker, the one who doesn't believe without 3 witnesses and a signed document. He stopped, thought for a minute, and nodded his head. Then he went into the kitchen to talk to Alex, returning with a grim look on his face and nodding again. It all fits. The full body tremors, the recent hearing loss, the trouble swallowing, the legs buckling when he stands...

I told him that I don't plan to say anything to the Neurologist until he's fully evaluated things and then ask him to rule it out if he hasn't already. Doug told me I should say it up front, because I've never been wrong yet on a diagnosis and we can't wait for them to figure it out on their own. I've been down this road before, with the Spirit literally yelling at me to help one of my children because no one else could see what was wrong.

This whole last month has been so insane, swinging from the realization that he's an adult and mentally capable of doing all those adult things I somehow never planned for but now the realization that while he may finally be mentally capable his body is completely revolting. And of course I can't tell him yet, can only assist him in tracking his symptoms while we wait for our appointment with the Neurologist. Continue living in medical limbo.

Run Aways

Today seemed like every other day until I returned from taking Madi to school. The garage light was on, doors open, and my younger 2 boys were gone. I'm sure you can imagine the panic running through my head as I went back and forth between thoughts of them playing a trick and hiding or being kidnapped. Neither were true. After 5 minutes of frantic searching and yelling I saw a shadow through the window by the front door... they were standing on the porch debating whether to come inside.

Life for my two middle schoolers has apparently become harder then they wanted to admit or could handle. They told me of their frustration with being overwhelmed in class, not being able to focus on the directions given, and then feeling they would get in trouble at home if they complained. 

My 14yr old had been planning this since Christmas, bringing my 11yr old into the plan in February.  Official plans has begun weeks ago. Geoff had printed maps at school saying, 'you'd be amazed what they let you do on the computer if they think it's for a project.' Water bottles had been filled and placed in the fridge days ago. Survival backpacks had been refilled with blankets, rope, extra clothes, books, CD players, a bag of change, flashlights, and an umbrella.

They planned to head West on their bikes toward Benton City, Prosser, then on to Seattle where they'd clean people's yards to earn money and eventually sell their bikes to purchase plane tickets. The goal was travel to LA, then Florida, New York, and finally Paris. Big dreams unlikely to happen but I have to give them points for planning.

Obviously my little actors had us all fooled that life was okay. We failed in a big way to see how much they were really hurting. Life will be making some big changes. I'm still not sure what changed their minds and made them come back home, they had already made it a few blocks away. I'm just glad they did.

Have you heard my story about Autism?

Another blog I follow, Welcome to StimCity, asked yesterday 'What is your Autism?' I saw the question when it first posted but didn't have time to comment. Today I read through some of the many beautiful words written and realized I needed to share as well. For each of us affected by Autism it means something different. This is what it means to me.

My Autism is...
Trusting that God has a plan for my boys that I can't yet see.

Being daily amazed at how far they've come, realizing that it's because of our combined strength, and knowing that I've been given a great gift to have them as my children.

Struggling to contain my emotions at school meetings, doctor visits, church activity, family gatherings or anywhere else where they may be judged as different. Avoiding taking them shopping because it's too hard for me to remember what I'm there for and still keep my boys from falling apart. Creating great adventures at home where we are 'safe' from the outside world.

Wishing I had more than 2 hands so I could hold their hands and rub their back at the same time. Finding new ways to make my little guy feel snuggled... without actually touching him. Wishing I had more time and energy to make all their food from scratch to avoid the dozens of allergies they each have. Making at least two, and often three, meals for every meal for my family of six because no one can/will eat the same things.

Having an extensive knowledge of all things Nintendo, Pokemon, Star Wars, Super Heroes, and Thomas the Tank Engine... because occassionally it can earn you extra 'Cool Mom' points or be the only thing that saves me from a public meltdown.

Going to school meetings, not just for my boys but for my friends' children, and fighting for changes in our local school districts. Being quick to call in the media when any child is treated unfairly. Fighting for teachers to attend our annual Autism Conference. Figting for a resource center to help families receive diagnostics and therapy. Creating a website for our support group that has information useful to families on a national level. www.aswtcc.org Printing piles of information to share with the pediatrician who's only reference for Asperger's was a paragraph at a conference six years ago.

Adjusting my work schedule as a bridal boutique owner to manage 5 trips to 3 schools per day to transfer my own and friends' children to and from. Making myself available to offer respite to other families as often as possible although I rarely receive any myself. Homeschooling part time because middle school is rough without being afraid of public restrooms, easily confused in crowds, fear of busy places.

Trying to explain to my mother why having my boys visit for a week or even two is more complicated than just getting them there, why I have to create a menu for her, why my youngest may become violently ill the night before the trip. Because that is his current pattern, how he avoided 4 field trips over the last three months. How her living at the top of a mountain away from the city doesn't mean it's safer for him. How she can NEVER let him out of her site. How eleven really means six, and how sixteen just recently meant older than ten with the possibility of fourteen.

Convincing my father that one on one swim lessons are the ONLY option because my son nearly drowned three times last attempt, and I was the one to pull him out each time. Convincing him that having the summers off is a good thing, lets my boys decompress, is the only way we can have a good start to the next school year. That not every boy needs to be an Eagle Scout.

Being the 'Mama Bear' more often than I wish I needed to, but being grateful that my oldest is finally coming into his own and not needing my defenses so much anymore. Grateful that he blends in at school now, that he is a defender for his friends that still struggle, that I know he will be okay living on his own soon.

Not sleeping more than four hours per night, because I can hear them tossing or getting up multiple times or the coughing tics that never quiet. Because I worry.

Having amazing people blessing my life with their support, their knowledge, their strength. Knowing that without them I wouldn't have known, wouldn't have learned so much, wouldn't make it through the hard days.

Learning a new language, a vocabulary of acronyms, therapy techniques to use at home because we will never quite qualify for anything official. Knowing that no one ever just has Autism, that there is a myriad of other diagnostic terms and languages to go along with it. Becoming friendly with the words tic, stim, squeeze, flap, OCD, ADD, anxiety, panic disorder, etc. Knowing that the doctor who diagnosed my son with oppositional defiance and told my husband and I we need parenting classes had obviously not read anything his teachers had written about how helpful and sweet he is. That just because the doctor said it doesn't make it true, it's all just based on opinions and an hour with my child does not make you an expert. It's okay to fight back, to trust your gut. Most times moms are right.

Quoting laws at IEP meetings. Having a list of resources at my fingertips to help the mom of a newly diagnosed child. Maintaining my composure as we talk, as I relive her moment of realization. Making an army of friends around the world I would never have known otherwise.

Losing my spontaneity, having to plan ahead for the smallest change or adventure. Knowing the fine balance between giving this child enough warning and that child too much. Refusing to give up my sense of humor, always being the one to see the silver lining. Making music and funny business a part of our routine, making change a part of our routine. Accepting that it's okay, even better, to be different.

Loving all my children for their uniqueness, celebrating every achievement, hugging them every chance I can. Knowing it will be okay, that I've been blessed to be their mom.