June 28, 2010

Loving Long Distance

The house is too quiet. I've taken to listening to my Zune at deafening levels (does it matter that I'm about 70% deaf in one ear already?) just to fill the void. The trouble comes when I have to turn it off. Is there such a thing as auditory memories? Like muscle memory or ghost limbs, I hear noises, voices, giggles... the sounds of my life-but-not. I hear them like I'm underwater.

She lost her cell phone charger. No texts, no calls. I've talked to her the few times she's popped up on my chat list. I beat myself up when I miss her (oh, but when am I not missing them?). We talk about everything and nothing. 'How is T? Are you having fun? Are you behaving? What did you do today? How is the weather up there? I miss you guys...'

She found the charger! She called last night. Again, we talked about everything and nothing. She's a rambler. She talks to fill the empty spaces. So much my child that it makes my heart ache. Then I ask to talk to T. Oh, he sounds so grown up! Living and experiencing life by leaps and bounds, my boy. My heart breaks when he asks to see me. The subject changes and he talks of Toy Story 3 and birthday cakes. Just as quickly as he runs for the phone, he runs away and I hear the fading "Buh-bye... I love you." My heart lifts.

June 27, 2010

Another Country Heard From

Again, I've been lax in updating this darn blog. I'm actually scaling back on my internet usage, so this has fallen by the wayside a bit. Life has been a bit of a rollercoaster but, of course, that's nothing new. Let's see what's been happening, shall we?

  • Jeff's medication has been adjusted and things are going well. The leg pain, while still chronic, isn't as fierce. The GP signed some paperwork giving him a handicapped placard for 6 months to see if it would help the inflammation, which it has.
  • Jeff is working from home for the next few weeks. Money has been tight and his shoulder has been acting up from the cane, so he got the okay to work from home until things steady out a bit.
  • The kids are visiting their father, which is a nice break for all of us. The kids really like the time with their extended family right now and Jeff and I use the time to get all of our checkups and medication adjustments done.
  • Their father and his wife split, which means that he's living with his mother. This is great for the kids because it means less transitions for Theron and less back and forth to lose things. Plus, they get to sleep in and spend more time with their extended family.
  • T's medication was increased again but that's to be expected. He's now on 1mg of Risperdal and things are going along pretty smoothly, from what I'm told.
  • E's report card and Scantron results arrived. She got straight A's all year and gained 190 points in Reading (putting her at a 12th grade level) and gained 307 points in Math (putting her at an 8th/9th grade level). Woohoooo!
  • T's MAP test scores came back. Most things were as expected but his Math level was off the charts, even for an "average" student. He beat the district average for his grade level, which is phenomenal! Next year we'll be focusing on academics now that we know he can really process them. Obviously we'll still work on social skills and such but those will be done via group activities and 1:1 therapy instead of the main class focus.
  • My doctor has switched around my medications a bit. He increased my Neurontin and added Cymbalta, which has worked wonders to alleviate the majority of the nerve pain. He suggested Lyrica but we quickly realized that even the max dosage wouldn't give us the pain relief we've been working towards. The Cymbalta gives us some wiggle room and the side effects have been mild, which is a definite bonus. I'm glad that it's got a secondary classification for pain relief because my insurance hates to pay for it (it's primary classification is as an anti-depressant and my insurance forces people to try two alternatives before covering it under that classification).
  • I'm VERY slowly losing weight. We're cutting out a lot of processed foods and switching to lower fat and caloric content snacks. Now that summer is here we can pick up a few pieces of fresh fruit every few days (mmm, peaches!) and seedless cucumbers have become a staple. That's not to say that we don't splurge but it's much fewer and far between. Also, I'm drinking a bit more coffee, if you consider those General Foods International powder mixes and Folgers coffee bags to be coffee, which acts as a diuretic and counters the somnolence that comes from my medications. I'm still only ~1 cup per day, so that's definitely within safe limits.
  • Jeff is working on some translation projects, essentially working him like a second job. It'll all be great for his resume and the eventual payoff will allow us to do some things we've really wanted to do but it's a big adjustment for both of us. He's set up an office in T's room and it's helping to keep him focused and it allows me to go in and lay on the bed if I want to spend some time with him (we're both good at enjoying togetherness without having to heavily interact). Of course, there's a deadline, which really helps us to know that things won't always be this way.
  • We've taken on a new hobby: Aquariums! We have a 55 gallon community tank in the livingroom which is moderately planted and has various species of tetras and catfish as well as some snails, shrimp and one betta. It's wonderfully serene, which is great, and the upkeep is pretty reasonable. We have a goldfish tank in T's room and a Figure-8 puffer tank in E's room, which rounds out the collection. Those are both easy to care for and the white noise really helps the kids sleep a bit deeper. We're hoping to get another large tank as a semi-aggressive tank since the pretty fish (ciclids, angelfish, knifefish, gouramis and sharks) need to be grouped together (they'll eat all of the small fish in the community tank). It's something for later in the fall and we're going to take our time stocking it so that we can enjoy setting it up as a family project.
  • We're debating adding a hermit crab setup. We won a large terrarium at the latest reptile convention and it's now housing our crested gecko, which means that our smaller terrarium is available for them. The upkeep is easy and we have most of the stuff already. We'd really only need sand, food and the crabs. Since E wants to be a vet, this is just another thing for her to learn from, which is never a bad thing. Plus, they'd make great "classroom" pets!

So, that's everything, in a rather large nutshell. I'm keeping my fingers crossed for bigger and better things for all of us as the year progresses, and I'll do my best to keep you all updated. Until then, play your little hearts out, my friends! It's a lovely summer!

March 12, 2010

Oh my...

Has it really been over a month since I last posted? I thought that surely I'd updated since then. Ah, apparently only in my (wild and disorienting) dreams. So, let's play a little game of catch-up, shall we?

  • Jeff is back at work. As in, back in the office. This is playing hell with his leg since his meds keep him pretty sleepy. He actually passed out in class once (he's in some new academy training thing, seems they like to use him as their resident guinea pig) and the instructor just looked around and asked if he was okay. Thank goodness everyone knows about his leg and the pain meds because I fear his rump would have been roasted.
  • Jeff is also changing meds. He'd been on an anti-depressant for 4 years and it just up and quit on him when he truly needed it the most. Well, thank goodness our relationship is strong because, I'll tell you, I wanted to stomp on his toe some days. Also, he invited me to his doctor's appointment to explain my thoughts and fears. It made a huge difference. She agreed that his fear of changing meds was valid, but that my concerns about his, shall we say, "recreational outlets" were also well founded. She encouraged him to move around more (as much as possible with a bum leg and a 30 year old cane), soak up the sunlight and just enjoy life outside. So, he has and we have and it's been wonderful! I think the change in meds was long overdue and just the jolt needed to really spark some interest in the world again.
  • T's medication dosage was doubled after the first month. He responded very well to the initial 0.25mg of Risperdal but his super-dense little body built up a tolerance very quickly. After 30 days, his doctor agreed that doubling his dose was both necessary and perfectly safe. Apparently there are children on 10mg of this stuff! Makes T's paltry 0.5mg look like a breeze. He's taken well to the change and he's my shiny, happy boy again. Yay!
  • T's IEP review is also coming up. We'll have two. One via phone next Wednesday just to increase his General Education hours and check off our "annual review" form, and the next sometime in May to set up next year's plan. Here's hoping there's no major upsets in store.
  • E is now homeschooled via the K12 program. She's doing wonderfully but, I'll be honest, it's frustrating for both of us that she's making up a full year of course work in just 5 months. Oh, she knows the material and she's up for it, but it's a lot to ask. Isn't it? At least it's tempered with the ability to go full-on 90's grunge whenever we want to. Greasy hair (hey, the natural oils are great for your hair!), gritty clothes (uh, the germs are building our immune systems?) and not brushing our teeth until after lunch (yeah, fine, that's gross). Still, I can't say that I'm hating being able to share some housework and quality time with my girly.
  • My back has been acting up, but the doctor said that the MRI showed no change. I'm still broken, but no worse than before. I'm on nerve pain blockers that work kinda so-so, but at least I'm not locking up and crying like I was before. So, why do I hurt so damn much? Why is the pain on the left AND the right? Why is my ass still spreading and no one is showing a lick of concern besides me? (All this and more on the next installment of General Practitioner!)
So, all in all, life is good. I've been getting a bit of baby fever but, thanks to wonderful forethought on my then-24 yr old brain, we don't have to worry about any biological-clock-syndrome babies. Of course, I will ooh and ahh over everyone else's and encourage my friends to have more (if they want them, of course). Such is the way of the almost middle aged mom.

I've gotten a bit belligerent when it comes to news and truths vs popular opinion. I'm just so sick of the sheeple attitude. I mean, do we all just believe whatever we're told without actually looking for facts and thinking for ourselves?

No, Locks of Love does not give wigs away free to kids with cancer. Their wigs are sold based on a sliding scale and were originally intended for children (up to age 18) with alopecia. Now they cover up to age 21, but kids with cancer is still not their primary target. As a matter of fact, they actually sell some of the hair they collect, making hundreds of thousands of dollars per year. BBB won't even endorse them, so what does that say?

Corey Haim didn't die of a damn drug overdose. His autopsy results are backing up his mother's, agent's and doctor's claims that he was ill. He was shown to have an enlarged heart and pulmonary congestion (fluid in the lungs). His doctor visited him at home, prescribed medication and ordered bed rest. His mother laid in bed with him and reported labored breathing. In the middle of the night he collapsed. Those are the facts. Not some trumped up "OMG another poor celebrity just OD'd again" BS. I think we should all be respectful of his memory and family/friends and just back the hell off for a while.

Georgia is trying to censor 1st amendment rights by passing a law stating that crime scene photographs cannot be obtained nor published by the media. Wait, what? It's a matter of public record. Oh, but the real issue is because of who asked for the photos, and is nothing more than a personal distaste for the particular publication and it's owner. It seems that a journalist from Hustler* petitioned to obtain crime scene photos of a raped and dismembered hiker, which threw this whole thing into overdrive. It all boils down to the courts choosing who gets to have information based on how well they like that particular media outlet. Can we not agree how wrong that is, regardless of our feelings about the names involved? Any violation of 1st amendment laws should be cause for concern. Censorship is wrong and, above all else, scary as hell. I want to have the facts at hand and make the decision myself. Don't you?

*I do not, in any way, feel that Hustler should publish the photographs. I do feel that they should have the right to make the choice for themselves. I would hope that they would respect the deceased woman's family and friends and, if a story were to be done, that they would do their best to honor her and bring to light the devastation that violence brings on both a local and global scale.

February 01, 2010

What a weekend!

I know it's been a while but, frankly, I didn't have anything to report. Now that I do, I will!

I'll get the bad news out of the way first. One of my surrogate aunts, a friend of my parents' when I was a wee thing, passed away this weekend of complications from COPD. Her husband has asked that we donate to the American Lung Association rather than sending flowers or cards, so that's exactly what we'll do.

Good news time! (I'll do this one in order.)

Friday night we got the china cabinet put together. I didn't realize it was a country white but I can make it work. The china I inherited from my grandmother is the Royal Mail pattern in brown and white, so it will really help pull everything together. Yay!

Saturday evening I went to a PartyLite gathering that my neighbor was having. I won a votive holder, a tealight holder in the shape of a kitten, 2 tealights in my favorite scent and 5 votives. I did order a dozen tealights out of guilt but I know that I'll enjoy them, so it's no big deal.

Today, we slept in. It was lovely... except that I woke up with a backache like you would not believe. I powered through, however. We assembled the craft/sewing cart and it is awesome! It fits perfectly in front of the window behind the couch and gives me a great amount of space to work on. It will also hold all of E's art stuff.

On that... E was accepted into the K12 SCVCS program! She earned straight A's again this semester and this is the perfect reward. She's wanted to try this program for so long and now is definitely the time! I browsed through the course list and it all sounds amazing. Once we get a feel for her core classes, we'll add in her foreign language. She's already chosen French, which will thrill my mother to pieces. It was so cute to see E get frustrated because they wouldn't allow her to start her classes today. I just love seeing her get so excited about school! I remember that this was the age where I was so far ahead of my classmates that I was bored, and angry that the school's only answer was busy work. She was beginning to fall into that pattern as well. No busy work in this program! She does have actual, physical work but that is just to be able to put into practice what she will be learning through the program. It will also be sent in for the school to see that (A) she's doing the work as agreed in the contract and (B) she's doing the work correctly. I don't foresee any problems. We go to withdraw her from public school tomorrow and we are so excited!

Tonight I managed to get the livingroom picked up and snapped some pictures so that I had a grip on what I wanted to change and what still needs to be done. I also got the dishes done and cleaned the kitchen. That takes such a weight off of me for tomorrow.

The down side is that I am far too anxious to sleep tonight. I may just end up taking a sleeping pill and forcing myself to lie down. I already have a "relax" candle burning in the bedroom in order to help me fall asleep quickly once I actually get my butt back there. Here's hoping!

January 24, 2010

Ever ready.

Like those batteries, I am always ready to get the ball rolling when my kids need something. So, tomorrow looks to be a long day.

E was put into the Academically Gifted Program classes around 2 months ago. This means that she tested in the 96th percentile in Math and English Language Arts out of all children in the state. However, placing her so late in the year has left her at a severe disadvantage. She's behind in the work because she was never taught the past skills needed to utilize the current one. This means her grades are suffering. Also, because they pull her out of her regular classroom on Mondays and Fridays, she's been forced to give up Music, a class she adores. It also means she's been singled out and a few of the girls in her class have taken to being bullies. Even after informing the Assistant Principal at her school, nothing was done. So, tomorrow I get to go and rectify that. I will be pulling her out of AGP and informing the AP that he has until Wednesday to address the bullying issue or I'll do it myself.

T has been assigned a Service Coordinator and I spoke with her on Friday evening. She would like to do a school visit to evaluate him, so I've rattled off an e-mail to both his teacher and the AP of the school (remember, she was the Autism Program Coordinator last year). I'm hoping we won't run up against any walls. The majority of his behavior problems surface at school and she really needs to see him in that setting in order to determine what services would best benefit him. Now we're just waiting on the school to let us know whether Wednesday or Thursday would work better for them and what hoops we need to jump through to make it happen.

January 22, 2010

You're no Dymo, so quit labelling me!

Some days I feel like the only mommy blogger on the planet who is not quoting scripture with almost every post. I don't attribute every accomplishment to a higher power. I want the rewards and the accolades when things go right because, you know what? I fought like hell to make those things happen and I'm damn well going to stand up with pride when asked about it. Conversely, I will also own up to my mistakes, eat crow and suffer the consequences. Come to think of it, I also swear. A lot. Maybe I'm just comfortable being me on here or maybe I want to show people that I'm different, and different is good. Goodness knows we need T to understand that because he's never going to be like other kids. Not really. And that's okay!

I'm here to say that I'm not like other moms. And that's okay! (I think that might be my mantra. That or "Where's the chocolate?" It could be a tie.) I'm not Christian or Muslim or Jewish or Buddhist or any other religious label. I'm just a mom trying to make it all work. My laundry is never done (and, really, whose is?!), I don't get enough sleep, we have breakfast for dinner at least twice a month, I swear more than a drunken sailor, there are always toys of every variety laying around and I'm okay with that. Life happens and we all take it for granted but there are reminders everywhere. The crayon drawing on the bi-fold doors to the game room/Jeff's office. The smear of yogurt on the kitchen table that 9 yr old hands missed while cleaning. The chewed up couch pillow (bad dog!). The dozen little yellow Post-Its stuck to my laptop podium reminding me to pick up this doctor's note, call that teacher, make the kids try this snack after school or brush the cats (hairballs suck). Sometimes I need those little reminders because otherwise I would lose sight of why I put myself through all of this.

So, to hell with all of the people who feel that I can't be a good person without the proper religious label. Eff ewe to the people who spend time trying to find fault in how I do things. Sod off, you people with more time than Carter's got little liver pills. The people I answer to smell like Johnson's Baby Shampoo and DermaSmooth and they talk in their sleep and give the best hugs ever and I would do anything to see their faces light up with one of their smiles. The rest of the word simply pales in comparison.

Now, my to-do list is longer than E's hair (almost to her butt!) and I'll count myself successful if I accomplish even a handful of things. Why? Because no one cares about the clean laundry sitting in laundry baskets when there are cupcakes to be frosted. Cupcakes are life's little high-five for everything you did instead of a reminder of what you have left to do. And shouldn't we all be as supportive and rewarding as those glorious cupcakes?

January 21, 2010

Bridge over troubled water.

From the recent school newsletter: "On 12/18/09, the CDC released the prevalence of ASD's is 1 in 110, or 1 in 70 males and 1 in 315 in females." This is based on data collected in 2006, and the numbers are increasingly yearly. So why, when caregivers of people with ASD's need it the most, are budgets being cut by thirty million dollars (or more) and services discontinued?

This is just one of the many frustrations I have dealt with this week. However, in the midst of all the turmoil, there is a ray of sunshine; a beacon of hope, if you will. Just today, within an hour of making contact with the person I needed to speak with at our county disability board, I had T screened in, approved for services, a service provider chosen, made contact with the service provider and been assigned a personal service coordinator.

Holy guacamole, folks! If you've been keeping track, it has been less than a week since we saw the doctor. That means we've seen the doctor, gotten the phone numbers, started T on his medication (today was another GOOD day at school!), contacted the disability board, contacted the service provider and begun what will likely be a rewarding and frustrating journey for my son and the rest of our family.

I am hopeful for the first time in a long time. T's medicine is working, the household is calm for the first time ever and we will now be able to provide T with the tools that he's needed for years, but couldn't afford or didn't know that we qualified for.

So, you bet your sweet bippy that I e-mailed the owner of the service provider (remember, she's the wife of our pediatrician) and explained how quickly this process has taken place and thanked her profusely for everything that she, her company and her husband have done for us. At a time when tempers are high due to lack of funding, I hope it will be nice for her to get some positive correspondence.

And, now we clean! I'm sure they will have to come to the house to evaluate T and goodness knows we don't want laundry sitting out or dog/cat fur all over everything. Plus, this will give us something productive to do while we wait for the service coordinator to call us!

January 20, 2010

Progress Report.

I'm warning everyone that I didn't sleep at all last night. Please forgive me for any misspellings, gross grammatical errors or long-winded ramblings. I hope to be in bed very soon but I wanted to update everyone while it's all still fresh.

So, today was T's first day back at school on the new medication. He woke up and was great about getting ready without fussing and I started out very hopeful. Then he just crashed. On the bed while getting his shoes on. On the couch waiting for the bus. He would just sit down and his eyes would glaze over, then his eyelids would slowly sink down and he'd be dozing off. I took a deep breath and decided not to give up just yet, so I rustled him awake and shuffled him onto his bus. I did let the bus driver know he was on a new medication (is it just me or does that imply that he was on something else before this? not unless Zyrtec and Pulmacort count!), so I was confident that they wouldn't be caught unaware if T decided to act oddly.

I spent the morning making roughly a dozen phone calls, answering the same questions over and over and butting up against tons of voicemail brick walls when transferred to the people who were supposed to help me. It's frustrating, to put it mildly. However, I dutifully left my name, my son's name, his diagnosis, age and our return phone number. Tomorrow I will follow up with the one who is supposed to get the ball rolling.

I also called my son's Assistant Principal, who is the most wonderful woman I have enountered throughout this entire process. She was the Autism Program Coordinator last year and acting Administrative Assistat Principal (which just means she did all of the work without the cool office, title and payscale). She was promoted and I couldn't be happier for her and the school. She has an amazing open door policy and even lists her direct number if a parent needs to get in touch with her. I was shocked when she actually picked up her own line and more than a little relieved to hear a friendly, familiar human voice on the other end. I rambled at her for probably 20 minutes before getting to the point of my call... T's absences.

Between his asthma, allergies and behavior issues, he's missed a bit of school this year which is a problem in this state. Well, thank heavens it's up to the school administrators because all the AP needed was a note from me stating that his absences are related to those three things (which they have documentation of and she is very familiar with). Ta-da - done! She was also familiar with T's new medication and is very hopeful about the potential progress we could see. Yay!

Now, cut to the kids getting home from school. T bounded in the door, happy as a clam, bellowing "I had a GOOD day!". So, I read his daily planner/communication folder and... he did! No tantrums, no aggressive behaviors, no meltdowns! The teacher said that you could see him getting upset and struggling to handle it himself, and he was successful. I'm sure he wasn't a picnic today (refusing to comply, no matter how nicely he refuses, is still hard on the whole classroom dynamic) but this is still progress. I'm thrilled!

All of this gives me hope. Hope for a bit of desperately needed peace for us all and hope for T's future. I really want this to be the beginning of having him lead a wonderfully fulfilling life.

So, dear friends, I'm off to take some medicine and drink a cozy mug of Sleepytime Extra tea in a semi-dark room. I really need the sleep and I think that my body and brain will cooperate now that some tension has been alleviated.

Every day is like a Beatles lyric these days.

First everything was all "A Hard Day's Night", and I wanted to go all "Maxwell's Silver Hammer" on people, but I did a little "Crying, Waiting, Hoping" and then asked for some "Help!". People said it'd be a "Long and Winding Road" but I knew I had to do anything I could to "Take Good Care of my Baby" and even though "It's All Too Much" sometimes, most of the time "I Feel Fine" and, finally, "Here Comes the Sun"!

(Yes, I know that was annoying but it's 2:15 in the morning and I have to get my kicks somewhere, right?)

So, day 2 of Risperdal for T and things don't look much different, which is actually a good thing. It's one of those medications that needs to build up in his system, so seeing any major difference right now would mean the dose is too high. Better a bit too low than too high on this stuff! I really have great hopes for this because, let's face it, we're grasping at straws here. More good news is that his wife owns an early intervention/ongoing services company and he was able to get us some numbers to call for programs and services that T might qualify for. So, that' what I'll be doing tomorrow. (Can I just say that I love this doctor? We were there until 4pm yesterday and he called us around lunch time with the numbers we needed. Awesome!)

T's antibiotics seem to be working. He hasn't mentioned his ear hurting which is great. E had a doctor appointment today, though. The doctor said she doesn't have an ear infection yet, but she could if the fluid in her ears fills with bacteria. So, he gave us some samples of a decongestant to get the fluid out before the bacteria can get to it. Here's hoping it works!

The doctor also addressed E's ongoing stomach pain and let us know that, if it continues for much longer he will be referring us to a pediatric gastroenterologist. All of his x-rays have only shown us that her colon and intestines are distended and, with a daily regime of Miralax, that shouldn't be happening. So, a few more weeks of extra fiber in her diet and the Miralax and we'll see if it helps at all. If not, we can add another doctor to her armory. At least her pediatric endocrinologist has said that we don't need to monitor her as closely. (Hey, I have to find something positive i all of this muckety-muck!)

Jeff has a followup appointment for his Lateral Femoral Cutaneous Nerve Entrapment next week and we really hope the doctor has some solid answers or plans because living like this is just not an option. The pain is unbearable and the medications to manage the pain turn him into a zombie. We need to know our options and get some kind of prognosis. I have my fingers and toes crossed!

As for me? Well, I'm hanging in there. Barely. This is all so much to handle and I feel like I'm unraveling at the seams. I have some hobbies that keep me occupied I feel like I'm kind of obsessing on them in order to avoid thinking about the implications of the rest if this. Ostrich much? Well, let's be honest, it's a whole lot for any one person to handle and I'm not Wonder Woman by any stretch of the imagination!

So, who knows how often I'll update or how this will all turn out? Not me, certainly! I'll try to keep people in the loop but forgive me if I get caught in the riptide.

January 18, 2010

...and the band played on.

So, we're finally home from doctors, pharmacies, ice cream shoppes and neighbors. Holy cow!

The bad news is that T has an ear infection. Good news is that he's 50 inches tall, weighs 69 solid pounds (doc said he's heavy for his age but not fat, just really solid), handled the BP cuff and two finger sticks well and even let the doctor look in his ears/throat/etc! We even got a new nebulizer. Best Dr visit EVER!

The scary part is that we've finally hit the wall where our only real option to control T's increasingly angry and erratic behaviors (mostly at school) is to start him on Risperdal. We knew it would happen eventually but I'd hoped it would be later than this. The doctor is getting in touch with some service coordinators to see if we qualify for home based services to reinforce positive behavior and help everyone, including T, cope with day to day life. Everyone keep your fingers crossed, pretty please!

September 16, 2009

What's in a name?

There's a girl I've known since I was about 11 or so. When I moved in with my dad and started middle school, she and I clicked right away. We had the same last name, but with a different spelling. (Come to find out, we were distantly related, too!) She was my best friend. We did everything together and I missed her very much when I moved back to my mother's.

I met up with her again when my grandfather died and I made the trek, alone, to face my father and his family and attend the funeral. It was a disaster to the nth degree, but I stood my ground. I could have handled things better but, in my 17 yr old mind, I had just lost the greatest man I'd ever known. (Unbeknownst to me, I had some awful horrormones going on, too. But that's a story for another time.) She stood by me. She offered to let me stay at her apartment, even though she was in an awful relationship. She and I were as different as oil and water at that point, but she took my hand and helped me through that night and none of it mattered. And still, we drifted apart again. Through the joys of the internet (and my father, who still lives in the same small town as when I lived with him, sees her family almost daily) we are MySpace buddies.

Now, this friend has a daughter named Autumn. Pretty name for a pretty girl. But, and this is a big but, she uses the nickname Auttie. I'm not sure if she realizes the present and future implications of that. Or of how many other parents with a daughter named Autumn use that unfortunate nickname for their child.

Why is it so bad, you ask? Well, my faithful readers, some of you may already know but I'll elaborate for those that don't. "Auttie" is a not-so-nice nickname given to autistic people. A-HA! Now it dawns on you. Mother myself to an autistic child, I despise the carefree way that people throw this word around (or nickname, as the case may be) . It's like calling a retarded person a "tard", or a person with Down Syndrome a "mong". It cheapens the disorder and creates a stigma that the person will have to fight against for the rest of their life. With so many people on either side of the fence - there are those of us with children on the Autism Spectrum who fight daily to help our children master even the simplest of tasks while shaking our heads in disbelief at the people who insist that the disorder isn't real and is just another name for lazy parenting - you can see why this puts me on edge.

So, when I hear someone yell "auttie!" across a crowded room, my heart breaks and my fist clenches because I am preparing to confront one of them; those ignorant people who feel that there is nothing wrong with my child that a spanking won't fix. I'm not relieved at all when I see, instead, a small girl with brown hair flying behind her as she careens through the crowd. Whether or not this parent realizes it, they have just made their child's life harder. I'm saddened, because I know that I will have to continue to fight against prejudice for my child and that this parent has just condemned their child to my fight.

September 06, 2009

Leaky Faucets

I can't stop crying. Before anyone panics, the kids and Jeff and the animals and I are just fine. Except, no, I'm really not. I don't know how many of you have ever heard of Madeline Spohr, or Heather Spohr, but Maddie is the reason I'm bawling all the time. I see pictures and videos of her - smiling, laughing, learning to crawl, loving her family and them adoring her right back - and my heart breaks. Maddie passed away on April 7th, after the sudden onset of a very nasty respiratory illness. Maddie was born premature and had some lung damage because of it. She'd fought and survived a few other illnesses and no one expected this to be any different. Instead, her family suffered one of the most heartbreaking experiences of their lives, and the blog world looked on and wept with them.

You see, Heather had opened herself up to everyone via her blog ( www.thespohrsaremultiplying.com ) and we all looked on and watched Heather struggle with all of the ups and downs of parenting, and we all knew what that felt like. We, too, had those ups and downs. We watched Maddie fight and thrive and grow. We smiled at her antics and that contagious giggle of hers would make us all laugh. And then, the unthinkable. Silence.

I don't know how they manage it; their day to day. I would be a mess. I tell my husband, "Just lock me in a rubber room and throw away the key." I would be worthless, useless; life would be meaningless. But the Spohrs have something to live for. Heather is pregnant. They don't yet know the gender (the baby won't cooperate) but I know that, no matter what, this baby will be loved and cherished and, above all else, appreciated for the knowledge that most of us take for granted - the uncertainty of life.

So, I'll sit here and watch those videos and cry for Maddie. I'll wear purple for Maddie. I'll walk for Maddie. I'll grieve for Maddie in so many ways. Maddie, the child I love without ever having met; the child I will never meet because life is so unfair and there's not a damn thing we can do about it.

August 27, 2009

How Now Brown Cow?

Holy crow, it's been over a year since I updated! I really should be better about this. I'll try not to bore everyone with mundane details but I will give an update.

We moved! We now live in a cute little subdivision, renting a great 3/2, 1500 sq ft ranch with a great fenced in back yard on a corner lot. We have wonderful neighbors and the kids have made some great friends. The school district is amazing and both kids adore their new schools. More on that below.

Jeff managed to get a stress fracture in his foot and spent a few months working from home (which just about drove me nuts) but he's back in the office now and all is well. He has a designated "game room", which is actually the formal dining room, but goodness knows we're not formal and would never need something like that, so it's his for all of his games and such. He even got an Egret arcade cabinet (a Birthday/Father's Day gift) to put in there, which he's wanted for a very long time.

E is enjoying her new school. She has some new friends and says that it's nice not to be a novelty anymore. Her teachers love her, her classmates are all very nice and the environment is much more nurturing. She is still on the honor roll (her end-of-year report card had her on the B honor roll for the entire year!) and her general attitude is improving. The Precocious Puberty is still very evident, but even that seems more manageable now that the stress levels have decreased so dramatically.

T absolutely loves his new teacher and is doing very well in his new school. This school was designed with Autism in mind, housing 5 of the district's Autism specific programs, so you can imagine the difference that has made. He's not fond of having his own room, much preferring to hang out with his sister, but it allows him some private space for the times when he really needs it. I imagine he'll slowly detach himself from her and become more independent, which will be a boon to them both.

I am making new friends and loving the freedoms that moving have brought us. The only bleak spot is in trying to avoid the neighborhood Drama Queen. Luckily it's not difficult since her antics are well known throughout the land, but it is a bit tiring to see her get so worked up over my non-reactions. I'm too busy enjoying my friends and family to worry overmuch about the opinion of a person such as that.

So, that's the news in a nutshell. Maybe I'll elaborate more on the Drama Queen situation in the future, but for now, my kids are arriving home from school and there is much to be done!

April 05, 2008

Take my breath away.

Life doesn't stop to let you take a breath. The last eleven months have been a whirlwind of events, the likes of which would take much longer than I care to spend recounting. Thus, I will spare you the detailed update, my faithful followers that number in the tens of people.

I will, however, bring everyone up to date in a nice little bulleted format.

  • Jeff lost his job in April of '07. NetBank posted a 33 million dollar loss in the previous quarter and closed it's doors for good in September. Jeff's position was eliminated in the first round of cutbacks so he was one of the first to go.
  • Jeff and I got married on July 7th, 2007. It's a cheesy date but A) he won't forget it and B) there is some personal significance surrounding it.
  • Jeff started working for a major insurance company in October of '07. It's had a whole lot of ups and downs but things are on the upswing again so we're happy.
  • E's school has decided to give us a hard time regarding her absences, disregarding her health issues as well as her (exceptional) grades so we're looking to put her into private school this fall.

So, there's that. Of course, there's a whole lot more but those are the major points. On that note, I leave you all with a lovely and disturbing little tidbit I ran across while surfing the 'net. Behold:

May 20, 2007

Internet vs Real Life

Congratulations! You managed to click a labeled link and end up at this blog. Whether you were directed here by myself or you're just a curious bastard makes no difference.

Many people have made alternate personas for themselves via online forums, blogs or websites. Those people either lead very sad lives or they're just unhappy. What other reason does one have to pretend to be something or someone they're not? I see many people turn into assholes and bigots yet they'd never dream of saying those things to a stranger on the street. Anonymity breeds false confidence. Those people have yet to realize that no amount of false bravado will make their pathetic little lives any better once they log off.

I see many people who are bold and brash. Unapologetic. I respect the people who are genuine and unadulterated both in their real lives and online. It takes what my great grandmother called "moxy", which is far different than lying through words on a website. I respect ones ability to pay attention to the words clearly laid out in front of them, separate fact from fiction, and determine how this will honestly affect them after they turn their monitor off. A person's wisdom lies within their ability to turn the other cheek instead of repeating themselves over and over as if such a thing would really change another's mind.

Live, learn and move on. Be yourself; it's all you've got. Not many people like false platitudes, fair-weather friends or having smoke blown up their asses. The rest are just pathetic little peons still clinging to everyone's else's coattails.

Take care!

April 28, 2007

Lyrical issues.

I love music. I tend to analyze the lyrics too much, though. Tell me, how many of us have felt this way?

"I miss you but I don't miss us." (Virgil - "Amnesia")

How many of us have learned something through hindsight?

"You cannot learn a thing you think you know." (Poets of the Fall - "Dawn")

So, I listen to music and it takes me back to places and times. The crazy summer after graduation. (I swear I had a death wish!) The rough and tumble relationships. The births of my children. The million and one silly events that made me laugh or cry.

I bet someone's written a song about it already. And I bet I'm belting that song out in the car or in the shower while relating it to some obscure event in my life. I know I'm not the only one...

April 27, 2007

Crunch and Squish: An Explanation

Crunch and squish: The sound your food makes when you bite into it.

My fiance's friend once said that food is only the sum of the condiments you enhance it with. For instance, a burger is nothing without the seasonings, bun, veggies and mustard/mayo/ketchup that you add to it.

Well, I'm sure it can mean more than just that. Like the sound a Palmetto bug when you step on it. Creepy little fuckers that they are.

April 25, 2007

It's the drugs, man.

Okay, so I get the appeal of drugs. It makes everything swimmy and out of focus; like it's not really happening. The shithole that is your life is really all just a dream, right? But what happens when you wake up, dry out or get sober? The shithole is still there, isn't it? Except now it's clearer, sharper and you can't run away.

Yeah, I'm rambling. I'm some goody-two-shoes who has discovered the joys of Lortab after having a few teeth yanked. I guess I'm just smart enough to know that this balloon-head feeling will pass and my life will be exactly as I left it. Not better and not worse. Just a few days later and a lot sicker.

Damn, these things make me ill. Now I have to take a Phenergan to make it tolerable. It's a vicious circle. Drugs for my drugs. Oh, what a charmed life I lead.