To be the Queen of Chaos, you have to be a little warped.

Mr. Sandman – WTF?!

Today I’m getting inspired by Mushroom Printing, a site created by the lovely blogger Aunt Becky at Mommy Wants Vodka, who is also the brains behind Band Back Together, a fantastic group blog that you should totally check out.

Mushroom Printing is inviting any and all bloggers to participate in WTF Wednesday, which is basically an excuse to have a good rant!  (And lord knows I could rant for days…)  Enjoy!

Sleep is one of those fundamental human necessities, right up there with eating and breathing.  One could argue that it is almost an unconscious act – if we stay awake long enough, sooner or later our bodies will most likely rebel and force sleep upon us.  That said, you’d think that sleeping would come naturally and effortlessly, just like blinking, or the beating of the heart.

Not so much.  At least for me.

This is NOT because I am one of those incredible superheroes people who can actually function optimally on 3 hours of sleep a night.  If I get less than 7 hours, I’m a train wreck.  I’m exhausted during the day, I’m moody, cranky, and edgy, I’m unmotivated, and I wind up craving sugar and caffeine to keep my eyes open.

And yet, I take forever to fall asleep, the slightest noise wakes me up, I regularly wake up at night for no reason at all (see taking forever to fall asleep), and I often wake up earlier than necessary.  When I fall asleep, I often have convoluted dreams that leave me feeling as though my brain has been running on autopilot rather than resting.  When I know I should rest, I get crazy second winds that make it impossible.  When I get desperate for a nap, it is usually a time when I can’t take one.

And forget it if I’m sick.  Whoever first said, “Drink fluids and get plenty of rest,” was a cruel bastard.  Yes, I would love to be getting rest – but the fact that I can’t breathe through my nose and it feels like a gorilla is sitting on my head seems to be interfering with that!  Guess I’ll just have to go have another glass of OJ at 3 am and hope for the best.

WTF, Sleep?

Image from asleepeasy.com

Sleeping should be human nature, shouldn’t it?  WTF?!

It’s Like Starting Over

Yeah, I kind of crashed and burned for a while on this blogging thing.  I haven’t really known what to say or how to say it without coming off as whiny.

I’m doing my best to juggle everything that is on my agenda these days.  I don’t like to do things half-assed, nor do I like to feel that there are limits to my capabilities, so I can’t say I’m too happy with my efforts.

I’m tired all the time, mostly because I don’t sleep well.  I’m in the worst shape of my life.  I look like I just rolled out of bed most days because I either don’t have time or can’t be bothered to actually get ready fully in attractive, flattering clothing with hair and makeup done.  I’ve been taking more short cuts than I prefer to on things like cooking and cleaning.  Basically, I’ve been trying to use all the energy and enthusiasm I have to meet the kids’ most pressing needs – therapies, homework, health and personal stuff, activities, etc.

Also, my anxiety symptoms have kicked up a bit.  I’m well aware that I may have to do some level of preventative maintenance for the rest of my life where that’s concerned, but it’s been hard for me to refrain from thinking, “Now?  Really?!  Because I don’t have enough to deal with?!”  That’s the devilish truth about anxiety – it loves to creep in and stir up trouble when the boat is already rocking.  Asshole.

So basically, I’ve been kind of vacillating between stressed, anxious, and depressed, all while trying to hide it from my kids and cope in appropriate ways.  Listening to my ipod and knitting a lot again – let me know if you need a hat or some shit.

The biggest struggle I’m dealing with currently, though, is probably the Guilt Monster.  I feel so obligated to make the right choices and do all the thinking, researching, and planning for Jasmine.  There’s just no shutting up that little voice that says, “This is all your fault, so it is your responsibility to make it right.”  That same little fucker also likes to say, “One wrong decision made by their mother – who is always supposed to get it right – could ruin one of these girls forever.  Their future happiness depends on you giving them a perfect childhood.”

Basically, life’s complicated these days.  I wish I could say I have my normal level of enthusiasm for upcoming pleasures, like our vacation or the holidays, but I don’t.  Most of that stuff feels like one big to-do list that’s following me around, poking me in the back of the head, taunting me.

So there it is.  It’s whiny, it’s grouchy, it’s a downer – but at least it’s a frikkin’ post, right?

Cheers, George.

In the chaos of determining our fall schedules, getting sick in the middle of it, and a lovely little hurricane killing our power, I have not only neglected blog posting but become a grouchy, cranky human being as well.  They say one should purge negativity to detoxify the body and mind, so today, I pay homage to comedian and social commentator George Carlin by creating my own list of

People I Can Do Without!

(Disclaimer: I am deliberately not mentioning the obvious people here – abusers, molesters, bigots, and other general scum of the Earth go without saying.)

~ People who can’t frikkin’ drive.  I’m not referring to speed of travel here.  This means anyone who can’t comprehend how big their vehicle is, can’t turn left without have 3 miles of clear road to cross over, doesn’t understand how a four-way-stop is supposed to work, blinds me with their high beams, or generally acts like a space cadet behind the wheel.

 ~ People who declare themselves experts at something they just mastered.  Ok, so you learned Japanese/lost 50 pounds/potty-trained your cat, whatever.  Doesn’t mean you now have a PhD on the subject and owe it to the population to share your discoveries with the rest of us poor saps.  What works for you might not work for the rest of us, and you only sound like an arrogant ass.  Who will probably gain the weight back within five years, statistically.  Ahem.

~ Parents who title themselves after their kids’ activities: Pageant Mom, Dance Mom, Hockey Dad, etc.  Makes it sound as though you are living vicariously through your children (or perhaps you are).  I don’t care about you – I want to know if your kid enjoys the activity.

~ Sheeple.  That is, people who base all their decisions on what is currently popular or being drilled into them by mass media.  Be YOU, not the person a bunch of money-grubbing corporations want you to be.

~ People who don’t smile at kids who are acting cute or friendly in public.  Crab-asses.

~ People who don’t understand the fine line between looking and staring.  If you stare at me, or especially my kids, be forewarned that I am fully prepared for you to be a creeper and to knock your nuts out your eye sockets.

~ People who spend tons of money on frivolous things and then bitch that they’re broke.  Hi, welcome to adulthood – create a budget and live within your means.  It’s time to be a big boy/girl.

~ People who think you can’t be smart or successful without a college education.  Hey, I never went and I’ll bet you I can spell better than most grads.  Besides, how smart is it to incur thousands of dollars of debt to earn a degree and then spend most of your adult life as a full-time parent?  It would be like buying a new car and locking it in the garage while you make your payments and take the bus.  Trust me, to raise three kids responsibly, you can’t be an idiot.

There are more, of course, but that’s enough for today as my bed is calling to me and reminding me of tomorrow’s crazy agenda of playgroup, therapy, more therapy, and house cleaning.  I leave you with a clip from the master, may he rest in peace.

A year ago, my best friend since childhood and I had a falling out.  We haven’t spoken since, and have cut off all other lines of communication (Facebook, etc.).  Do I believe I had a valid complaint and every reason to call her out?  Yes.  I do wish it had been dealt with differently in some ways (more talking, less emailing, for example) and I do believe that neither of us was in our best emotional/mental place when it happened.

I have to remind myself, however, that none of those factors invalidate my feelings.  I am not good at dealing with change, nor am I someone who is very socially confident, so I don’t seamlessly replace old friends with new ones.  That leaves me vulnerable to feelings of guilt, and ultimately, grief, at losing the longest lasting friendship I have ever had – the one I thought would be intact forever.

When that happens, I try to force myself to see our former relationship as impartially and completely as possible.  It’s easy for me to look at situations through rose-colored glasses when I’m feeling guilty or lonely.  The truth is, our relationship was far from perfect.  As much as I wish things were different, I can certainly say that I have learned a lot about myself as a friend, and what I need from a friendship.

I’ve learned that I need equality in my friendships.  It takes me a while to place an acquaintance into the category of “friend”, but when I do, I am loyal and devoted.  I will help and support that person as much as is physically possible.  I will make sacrifices for that person’s benefit.  I will keep my word.  I will allow myself to be emotionally invested in their well-being.  I now realize that I must receive the same in return.  For a long time I didn’t feel deserving of such attention – I thought it meant I was overly needy.  Now I am willing to accept that it is my right to ask that my friends give me the same respect and dedication that I give to them, because I don’t deserve to waste my time investing that deeply in someone who is not equally invested in me.

I’ve also learned that I need friends who accept me at face value.  I am a sensitive person, so anyone who wants to be my friend will have to be accepting of that.  I don’t deserve to have to alter my personality to suit others.  My friends shouldn’t pressure me to be something I’m not, whether it’s trying to convince me not to vaccinate my kids or asking me to try a new diet with them.  My friends shouldn’t talk me into doing things that make me uncomfortable.

I need to be enough for my friends.  I want my friends to appreciate me enough to want to spend time with me one-on-one.  My friends shouldn’t have to bring supplemental people along to enjoy themselves with me.  I shouldn’t have to befriend THEIR friends in order to be included in their social plans.  I deserve to have the full attention of my friends sometimes, and I deserve the freedom t0 choose the people I want to get close to.  I shouldn’t have to feel that my friendship with one person will be compromised if I don’t connect with other members of their social circle as much as they do.

I want a friendship, not a competition.  I don’t want to be friends with someone who measures their success or self-worth by comparing their life to mine.  I don’t want to feel guilty about sharing an accomplishment or bit of good fortune with my friends, for fear they will be depressed or jealous.  I don’t want to question my instincts because they differ from my friends’.  I want to be able to respect each others’ choices, support each others’ achievements, and enjoy the fact that we are not carbon copies of one another.

I realize this is an intensive list, and I accept that the result might be my having fewer real friends than I wish I did.  What I have learned, however, is that friends become such an integral part of who I am that a superficial, toxic friendship is far worse than no friendships at all.

Everybody’s got a cause these days, myself included.  We all want people to see the importance of the things we believe in; we all want to change the world.  Most people are well-intentioned when they spread their message.

Let’s face it though – the reality is that people generally “get it”, or they don’t.  A lifetime spent trying to get everyone under the sun to agree with you is probably a waste of time.  When I write out my opinions here, I’m sharing them with the hope that I might offer a new viewpoint for an open-minded person to mull over.  It’s up to them to decide what to do with the information.

People are largely unresponsive to complaining.  It becomes tedious to read, too, so that’s not what I want to spend much time doing with this blog.  I’m also not suggesting that I have any authority over others’ choices – free will is a wonderful thing, despite its occasional misuse.

That being said, in this post I’m offering up some suggestions anyone can do to endear themselves to a parent like me.

1. When in doubt, discreetly ask me what is permitted or acceptable for my child before offering it.  Few things are trickier to handle than, for example, a child with a milk allergy who’s just been offered ice cream.

2.  If my child spends time at your home, consider ways you can make them feel welcome.  That might mean relocating some collectibles, closing off certain rooms, or locking the backyard gate.  You are under no obligation to do this, of course, but I AM under obligation to keep my child safe and out of trouble.

3. Remember that parenting advice is almost NEVER welcome unless it is specifically asked for.  Allow me to deal with my child’s routines and discipline without interference unless you are asked for help.  Sometimes it is more complex than it appears.

4. Ask me how best to interact with my child.  Learn their likes and dislikes, and be accepting of what they can and cannot do, even if it seems like they “should” be able to do Task X by their age.

5. Understand that my child cannot always perform for your entertainment.  Hugs and kisses on command, posing for pictures, or demonstrating new skills may be more stressful for my child than you’d imagine.

6. Life is not a contest.  Nothing good can come from comparing your misfortunes with mine, measuring my child against another, or trying to categorize how “easy” or “hard” anyone has it.  This isn’t a race, it’s a journey – there is no grand prize at the finish line.

7. Believe that my whole family is doing the best we can.  My husband and I are trying our best to be good parents, my kids are trying their best to be well-behaved and responsible, and my child with developmental delays is doing her best to navigate a world that doesn’t always “speak her language”.   Focus on our accomplishments more than our shortcomings.

Bears

Mess with my cubs and you mess with ME.

Into The Woods

Sometimes I feel like two different people living in one body.  On the one hand, I’m eager to learn as much as possible about PDD/ASD, parenting a child with autism, treatments, advocacy, support organizations, etc.

On the other – I wish I could bury my head in the sand.  I’m scared about the amount of responsibility this places on us as parents – decisions we make now could affect how Jasmine is functioning 10, 20, 30 years from now.  I’m scared about having to be tough and strong, and perhaps even bitchy, in order to advocate for her.  I’m scared that I may always have to be checking and confirming that the people working on Jasmine’s behalf are, in fact, doing their jobs correctly and giving me accurate information.  Being a full-time mother is my comfort zone, but now I’ll be adding so many new facets to my job that it almost seems like a whole new position.

Most of all, I’m scared of the unknown.  I have no idea where Jasmine’s developmental path will take her 6 months or 6 years from now.  Other conditions have predictable courses – for instance, when my oldest was diagnosed with a bladder condition, physicians were able to explain to me, “This is what’s happening, this is how we will treat it, and if it doesn’t resolve to our satisfaction we will do that.”  No one can tell me for certain what will happen in Jasmine’s case.  Maybe she will catch up and be fully verbal – but maybe she will stay minimally verbal and rely on alternate forms of communication.  Maybe she will learn at grade level, maybe not.  Maybe her sensory issues will lessen, maybe they will get worse.  For a control freak like me, this is not fun.

I am fortunate.  I have a supportive family, I have incredibly understanding and loving older daughters, I have great friends, I have people in the autism trenches who are wonderful resources, and I have therapists who are helping Jasmine make strides.  (She said, “Dora,” with her OT for the first time today!)  Everything would be much harder without those assets.

I just hope I can be what Jazzy needs me to be – as her advocate, as her supporter, as her therapist/educator, as her time manager… but mostly as her mother.  That is who I am above all else.  My daughters’ mother.  Jasmine’s Mama.

Make A Wish…

I’m very lucky.  Since sharing Jasmine’s diagnosis with more people, the vast majority have been kind, sensitive, and compassionate in their responses.  I know what is lurking out there, though.  I’ve seen friends and family members suffer through the ignorance and insensitivity of others.  I’ve been angry and hurt on behalf of other children who are just trying to function in a world that doesn’t cater to their unique needs.

I can’t imagine how hard that will be for me if it happens.  I’m well aware that I can be borderline irrational when it comes to defending and protecting my children.  I wish I could create a perfect world for them.

So, tomorrow is my birthday.  Nonono, shush – I’m not looking for acknowledgement; I don’t usually make a big deal of my birthdays.  It just got me thinking about wishes.  Most of the wishes I’ve been making in my head lately revolve around Jasmine.

I’m a realist – I’m not wasting my time wishing for her to be developmentally typical.  Moot point.  Assuming her PDD diagnosis is accurate, she will never be typical.  (I wish there was a better term for that; something that acknowledges the developmental tracks of, say, my older girls, without making them sound ordinary compared to Jazzy.)  She will always view the world through her own unique eyes.  She will learn, she will cope, she will manage, she will adapt, and she will thrive, but she will not wake up one morning a different child any more than Belle and Ariel will wake up tomorrow with brown eyes.

The wish I contemplate the most is for people to get to know Jasmine as an individual and learn about her just the way you should build a successful relationship with any child.  I hope that people will care to absorb her likes and dislikes, her strengths and weaknesses.  I guess I hope people respond to her in a typical fashion, rather than wishing she herself was typical.  This might sound like a really odd Mommy take on it, but I don’t want Jazzy to be “special”.  I don’t want people to think she’s an inspiration, so strong or smart or whatever “in spite of” her PDD.  I just want her to be treated with the same respect, consideration, and kindness that ALL children deserve.  The PDD is more or less irrelevant.

However – I don’t want people to make assumptions about her abilities without asking.  I don’t want people to be insensitive to her needs and preferences.  I don’t want people to get so hung up on tradition or ideals that they are disrespectful of her individuality.  I don’t want people to try to get involved in her routines or try to set boundaries for her without caring enough to ask WHY she does what she does, and why we do what we do in response.

So far, so good.  Every therapist we have worked with thus far has taken a liking to Jazzy.  While working with Jazzy today, her SLP told me, “She’s a smart little cookie,” and “I have to work hard at withholding from her because she’s so darn cute!”  Her Early Interventionist and OT have both expressed a genuine affection for her as well.  I have no words to convey how much it means to me, her mother, to know that strangers who have no prior investment in Jasmine or our family have accepted her as is, and are fast becoming part of the extended family who will love and support her through her early years.  My gratitude is immeasurable.

A popular saying within the Autism community (autism, PDD, whatever – I don’t really care what we call it) is, “Once you’ve met one child with autism, you’ve met ONE child with autism.”  My wish is that everyone Jasmine meets on her life’s journey is someone who can sweep all the labels and assumptions away and open themselves to knowing JAZZY, who likes to do somersaults in her bouncy castle, who loves pretzels, who just learned to play catch with her sisters, who runs away with the remote at least once daily, who hates having her hair brushed, who will always smile when someone sings Itsy Bitsy Spider, who is so gentle with the cat, and on and on and on.

She’s a wonderful little girl who completes my heart, and I wouldn’t change her one bit.

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