Step into the Light

A few of you may have noticed that I’ve been posting a lot from Durham, NC. My eldest daughter is in a Partial Hospitalization Program for an eating disorder here. In December 2012, she was diagnosed with anorexia, severe depression, and anxiety. She’s been in treatment since then. Up until now, I haven’t told most people because she did not want to talk publicly about it. The other night she “came out” about it on her Facebook and has let me post this.

I cannot begin to tell you how freaking proud I am of her. She’s been dealing with this shitty disease for so long and she is still fighting! There are so many brave, strong people I’ve met over the past few years who are fighting the same battle. Some are current patients and some have dealt with it in the past. Eating disorders, depression, and mental illnesses live in the dark. We need to shine a light on them and make sure everyone who needs treatment gets it. If anyone who is reading this is struggling, please get help. Stay strong. You are worth it.

 

A few of you may have noticed that I've been posting a lot from Durham, NC. My eldest daughter is in a Partial Hospitalization Program for an eating disorder here. In December 2012, she was diagnosed with anorexia, severe depression, and anxiety. She's been in treatment since then. Up until now, I haven't told most people because she did not want to talk publicly about it. The other night she "came out" about it on her Facebook and has let me post this. I cannot begin to tell you how freaking proud I am of her. She's been dealing with this shitty disease for so long and she is still fighting! There are so many brave, strong people I've met over the past few years who are fighting the same battle. Some are current patients and some have dealt with it in the past. Eating disorders, depression, and mental illnesses live in the dark. We need to shine a light on them and make sure everyone who needs treatment gets it. If anyone who is reading this is struggling, please get help. Stay strong. You are worth it. #FUED #anorexia #southernsmash

A photo posted by Julie Lang (@inappropriategirl) on

What time is it?

So yesterday, BUMD called to say he was on the way home from work. Apparently the big hand on the clock was on “F” and the little hand was on “it” – clearly it was time to go home. He asked if there was anything I needed him to pick up (yep, I’ve got a keeper) and then was off to fight traffic.

Later on, he related that conversation to our neighbor, who was over for dinner. The Reigning Queen of Pink piped up, “well, if the big hand was on the “F” and the little hand was on the “it”, then you’d better either get up and leave or take off your pants!”

Ladies and Gentleman, I present to you my 12-year-old.

“What?” she said. “I’ve been in FLE all week. Of course I’m thinking about sex.”

Kids these days. She’s definitely an Inappropriate Girl-in-training.

What did you do this weekend?

When someone asks what I did this weekend, I won’t be able to point to any particular accomplishment. I didn’t finish any project, read a book, run a race, or really do anything notable.

This weekend I spent time with family and friends, fed and nourished my stomach and my soul, enriched my brain, and had fun. I didn’t accomplish anything in particular, but I got a lot done. Life was happy. I am happy. Isn’t that enough?

Teach Your Children

This latest bout of surgery has granted me a fresh new set of scars – six from the laparoscopy (was supposed to be five – was there a bonus round?) and one from the chest tube they had to insert after my lung had issues. That brings my grand total to, um, no clue. I don’t exactly keep track. A few from the appendectomy, a few more from the cholecystectomy, one really big one from the hysterectomy, a smaller one from the catheter I had for that, and now the newest additions. A lot of scars. It makes me wonder what kind of picture I could make if I played connect-the-dots on my torso. I should find that out some day.

Having all of these scars made me think of one thing – wearing a bikini is a part of my past. It seems a logical conclusion. Even if I get my body back to where I want it to be – which I intend to do – I have so many scars that my body is not something I should want to show off. Right?

Silly me. I’ve been spending years telling the kids that they should be proud of their bodies, scars and all. Apparently the lecture has penetrated their brains and not mine. When I mentioned the other day that my time in a bikini was done, the HTR looked at me and said “So what if you have a few scars?”

Right. That. Exactly what I would tell them if our places were traded.

Guess I have a goal for next summer.

Why Accepting Differences Matters

Yesterday, President Obama came out in favor of letting same sex couples legally marry. The so-called evolution of his opinions on the subject matters to me for a reason – it echoes how people have come to accept autism.

You see, I skipped doing my usual Autism Awareness Month posting this year. I’m more than aware of autism – my 11-year-old son has it. There’s really no avoiding it, even for people who are just meeting him in passing. But the ones who get to know him are the ones who have to make the changes in their mindset. We can’t change his autism, but we can change how we view it. That’s what acceptance means. Even if something initially makes you uncomfortable, or isn’t what you’re used to, you learn to deal with it. The people who’ve learned to accept Number One Son have learned to love him for him. But they had to get to know him first.

We were in the waiting room at the doctor’s office a few weeks ago. A group of children were sitting around watching a movie together. After a few minutes, one little boy turned to NOS and asked him why he was wearing his PJs. NOS replied that he always wore them. (Truth – we gave up asking him to wear other outfits except when the situation dictates more formal wear. It helps with his sensory issues – he’s more comfortable and therefore happier.) The little boy then told NOS that he was annoying.

Annoying? How, by being different? Really? That poor kid. He’s in for a real shock once he sees more of the world. For the record, I told him to stop being rude. There was no parental intervention on his part – for all I know his parents orphaned him in the doctor’s office. With the kind of wait we had and as much of a little shit as that kid was, not sure I’d have blamed them.

On the other hand, NOS’s classmates clearly love him. Last week, he earned his first good citizenship and study habits award. He came home, positively glowing, and told us that not only did he receive a standing ovation but he got more applause than any other kid who had received an award that day. How wonderful was that? His peers are well aware of how different he can be, but they still accept and nurture him. The differences aren’t that big when you get to know someone.

Which brings me to President Obama’s reasoning for his change in opinion:  “There have been times where Michelle and I have been sitting around the dinner table and we’re talking about their friends and their parents, and Malia and Sasha, it wouldn’t dawn on them that somehow their friends’ parents would be treated differently. It doesn’t make sense to them and frankly, that’s the kind of thing that prompts a change in perspective,” Obama said.

The better you get to know someone who is different from you, the less the differences seem to matter. It’s a huge change in perspective. My son’s classmates have made that change. The little boy in the waiting room hadn’t.

To me, Autism Acceptance Month represents the tip of the iceberg. By learning to accept someone for who they are, not who we want or expect them to be, we enrich our own lives. Letting a person be who they are doesn’t take away from us being how and who we are. That is, unless we decide that it does.

Opponents of letting gay people marry are doing just that. How does letting a same sex couple marry take away from my marriage? It doesn’t. It’s not a different kind of marriage than straight people experience. Does NOS’s autism takes away from our “normal” family life? No, nor does it affect anyone else’s family life. It’s ours, not theirs. It doesn’t make our family better or worse. Just our own.

We have a saying in our family – different houses, different rules. It tells the kids that what goes on in other people’s homes does not affect how things are in ours. Just because their friends do something doesn’t mean they can do it too. Marriage should be the same thing. BUMD and I married each other. That’s our business. It is not our business who someone else marries or divorces. Their relationship doesn’t change ours, or make it more or less legitimate, any more than my child’s best friend’s bedtime affects her bed time. Different houses, different rules. Let people decide for themselves.

Interlude: Goodness, I sound like a Libertarian. I started as a Republican, morphed into an Independent, then started leaning toward being a Democrat. I might be taking this Gemini thing a bit too far.

So here’s the thing – just let people be who they want to be and live the kind of life they want to. If it’s not hurting you, why do you care? So what if they’re different? My son is very, very different. He’s also quite wonderful. Are you telling me that his difference is bad? Probably not, because the trend toward dealing with people with autism and other disabilities is all about acceptance. Can’t hate on them anymore. Minorities are out too.

So now people have to find someone else to hate. Cue the Gays.

“Homosexuality is against the Bible, it’s an abomination.” I call shenanigans on that one. Quit using the Bible to justify your prejudices. There are too many things in the Bible that have already been rejected for people to legitimately hold it up as the final word on any sort of behavior. It’s a wonderful guidebook, but it cannot be taken as a word-for-word guidebook. Unless, of course, you decide to, in which case most people are doomed for eternity. Have fun with that.

Stop the hate. Stop treating differences as a bad thing. Acceptance is love. Love one another.

National Eosinophilic Awareness Week

Try to imagine your diet without dairy products. Then take out all the foods that contain soy. Now remove anything that contains corn or eggs. Last but not least, don’t eat anything that contains chocolate. Not much left, is there?

My youngest daughter, who is eight, has Eosinophilic Esophagitis. EE is an allergic inflammatory reaction of the esophagus. I generally describe it to people as being a combination of food allergies and reflux. When the Youngest eats certain foods, such as anything that contains dairy, soy, corn, eggs, or chocolate, they cause her to have pain in her throat and stomach. Many times the reaction is so bad that she lays on the ground, curled up in a ball, moaning in pain. This isn’t an isolated event.  It’s part of her daily routine.  With a limited diet and pain medication, we’ve been able to make her life fairly normal. Maybe not every person’s kind of normal, but one that works for her and for us.

We’ve been fairly lucky so far. We have access to excellent doctors. We live in an area where foods both typical and exotic are easy to find. We like to cook – my Bestest claims he can make crepes out of air, water, and duct tape. I am a stay-at-home mom and have time not only to cook and shop at several stores (you never can find everything you need at just one), but to stay at home with her when she’s feeling badly and to take her to the numerous doctors appointments needed to treat her EE. We have good health insurance that covers much of the cost of her treatment. We also have a good enough income to be able to afford the food that she needs and can safely eat. A pain-free diet costs more.

Like many medical conditions, EE causes a lifestyle change. Making dinner, or any other meal for that matter, takes a lot of effort and planning. I can’t just follow a meal plan in a magazine or casually pick something up from the store. Labels must be read and recipes often need to be tweaked or disregarded entirely. Going out for a meal? Good luck with that. When the Youngest is in dietary lock down (her strictest phase), there’s very little she can eat. At one point, we tried going to lunch at McDonald’s. The only things she could safely eat were a hamburger (no bun, ketchup, pickle, etc.), apples (no dip), and either water or apple juice. Most of the menu was off-limits to her. We were able to go there with some confidence because we could look at the food’s ingredients ahead of time and determine what was safe for her to eat. We don’t have that luxury in most restaurants.

Again, we are fairly lucky. Through a process of trial and error, we’ve determined that she can occasionally cheat on her diet and still have a clean endoscopy. That allows us to let her have treats – a meal out, her classmate’s birthday cupcake, that special dish she’s been craving – but not too often, and not too much, or her endoscopy comes back showing eosinophils in her esophagus, which means there is damage occurring to her insides, meaning that she’s sick – something that no parent ever wants their child to be.

Too many children with EE suffer much more than she does. Some can’t eat food at all. They have to receive their nutrition through feeding tubes. Others have an extremely limited diet. If you see a child who will only eat chicken and rice, perhaps there’s a reason for that. At one point, the Youngest was also avoiding food containing wheat and potatoes, as well as watermelon (which she detests anyway). She had eliminated EIGHT foods, along with anything that contained them, from her diet. There wasn’t much left in her diet, and yet there was so much more that other kids who have EE can eat.

For these and many more reasons, May 16-22 is National Eosinophilic Awareness Week. The American Partnership for Eosinophilic Disorders (APFED) is trying to raise awareness of EE and other related conditions. I wholeheartedly support their efforts except for promoting the DumDums. We’ve also been doing Feingold for years. Food dyes are evil. If you don’t believe me, give the Eldest or the Youngest something containing food dyes. Insta-Bitch.

If I had to choose one of my children to have this condition, it would be the Youngest. She’s tough, strong, spirited, and resilient. She’s so far been able to shake off any lingering angst that this condition could instill in her. Blood draws? Easy. Having her back covered with little bits of food for patch testing? Fun! Endoscopies are another opportunity to earn a Webkinz or other treat. Doctors appointments give her the chance to commune with the delightful Miss Denise and the rest of the team. She really does always look on the bright side of life. With some research and effective treatment, hopefully more people with Eosinophilic Disorders will have the same opportunity.

Patch Testing
Endoscopy prep - Taking Matters into Her own hands
Everyone's Ready!
Post-Endoscopy Nap
The Face of Eosinophilic Esophagitis - Isn't she cute?

Life is about 10% how you make it, and 90% how you take it. She takes it exceptionally well. <3

Hip 365 – Week 2

More adventures in my life, chronicled with my iPhone and the Hipstamatic app. You know, a lot of people are of the opinion that photos should be a certain kind of interesting.  They think that taking pictures of your food or of other things that aren’t interesting to them should not be done. To them I say this:  It’s my blog, my pictures, and my life. Sometimes I look at my picture of the day and wonder why my life doesn’t produce more interesting shots.  But that’s the thing – it’s my life.  Sometimes its exciting, sometimes its boring – ebb and flow. Sometimes food is exiting to me.  Lord knows, my cat often is.  The point is that these photos chronicle a year in my life, not someone else’s.  Don’t like it?  Don’t read it.

 

357 – A perfect day for a nap in Mom & Dad’s bed.

The older they get, the less likely they are to nap, period.  Which is a shame, really, because some days are just perfect for a nap.  When that nap takes place in a warm bed, cuddled between flannel sheets, and under a giant fluffy duvet, then how can you resist?  She certainly didn’t.  I should’ve suspected something was up at the time, but ignorance is bliss – much like a mid-day, weekend nap.

356 – Still small enough to fit in the fun shopping cart.

Nearly every time we go to the supermarket, she begs to ride in one of the car carts.  She’s getting too old for it, but apparently not too big.  If you look closely, you can see the huge bags under her eyes.  It was a rough night capped off with an early morning visit to the pediatrician.  Turns out she has strep.

355 – At the pediatrician’s office. Again.

When we got back from the doctor’s office yesterday, I asked the older two how they felt.  Strep tends to spread like wildfire around here.  No issues – then at least.  By the next morning, the eldest was moaning in pain and discomfort.  Back to the pediatrician’s office for another positive strep test.  The Son never did get it.  I guess there’s some advantage to his preference for solitude.

354 – 15 minutes before school ends and already a long line at kiss and ride. What are we all doing here so early?

Although the younger two technically could take the bus to school, the bus stop is halfway between our house and the school.  Since the school’s less than a mile away, it seems slightly ridiculous to wait at the bus stop every day.  Instead, I wait in line at the kiss-and-ride entrance at their schools.  Not that this option is any less ridiculous.  The line to pick up your kids starts early and fills up fast.  I’ve seen people in line over 30 minutes before school ends.  Craziness.  Even on this day, the line was long when I got there 15 minutes before school ended.  Why do we all like to hang around in our cars for so long?

353 – “A snuggle is good for a Weechin’s life.”

The youngest, still not feeling well, climbed in my lap for a long snuggle.  The quote is her own.  Her father called her Weechin (wee children) after something a friend once said.  It’s a fitting nickname.  She is quite the petite child.

352 – Self portrait, shorter hair

Finally got everyone back to school and had a moment to myself.  What to do?  Get a haircut, of course.  Having my hair straight is a luxury.  Usually it’s quite wavy.  I had to take a picture to celebrate the occasion.

351 – Ready to slay the boys at her first dance.

The eldest is enrolled in Cotillion classes this year.  The National League of Junior Cotillions sponsors classes at the local country club. She, along with several friends, goes once a month to learn basic social graces, dance steps, and how to interact politely with kids and adults.  It’s a great opportunity to socialize with kids her age outside of school in a civilized environment.  As part of the  course, two balls are held.  The Winter Ball was her first opportunity in a while to dress up.  We’d gone to get her hair cut and styled.  Her hair, like mine, is very wavy, so having straight hair is a rarity.  The salon had a complimentary make-up artist that day, so the Eldest also had her first professional make-up application.  Such excitement for her, but a little scary for her father.  While we were taking pictures, he handed her one of his swords to remind her just how to handle the boys.

The Gift of Autism

It’s in the letting go of expectations that we find the freedom to truly be.

The expectations. Oh, the plans I had for my kids. I’m not even sure what they were anymore. Time has a way of blurring our memories. That’s good, because reality has a way of changing our plans. It’s hard to be disappointed that things didn’t turn out the way you planned if you can’t remember what you planned in the first place.

Our kids and their futures go from a concept to a fact faster than you ever realize it could happen. One minute you’re dreaming of having kids and the next they’re walking out the door, heading off to pursue their own plans. That’s just how life goes. As much as we try to control it, time has a mind of its own. So, too, do our children. So why does it come as a surprise that we can’t control them either?

I’m not even going to get into the concept of controlling your teenagers. I don’t have one yet. Mine are 8, 10, and 12. Even at this young age they’ve proven that, as much as I’d like to control their destiny, I can only do so much. The rest is up to them.

None of my kids has done so much to reinforce this concept as The Son. He was our second-born child and our first-born (and only) boy. So, boys. You probably have some sort of preconceived notion of how boys are supposed to be. Certainly we did. He’d be a rough-and-tumble type, play baseball or soccer, be a Boy Scout, and maybe someday join the armed forces. We nurtured those dreams for the first few years, but even then he seemed so different from other boys. Eventually we found out he that he hates sports, doesn’t like to participate in group activities, and doesn’t like being outdoors because there are bugs outside. We also found out that he has High-Functioning Autism and ADHD.

Imagine taking all of your plans and expectations, and realizing that most of them are no longer an option. Military service is obviously out. We could force the sports issue, but he hates it. Why try to make the kid unhappy? He doesn’t like to spend much time with people, so Boy Scouts isn’t a great option either.

What’s left? Him, just being himself, and us trying to figure out how to help him be the best person he can be. Instead of trying to get him to meet our expectations of what he should be, we’re helping him to be successful as himself – and oh, what a self he has. He’s more self-confident than most people I know. He’s content to let his freak flag fly. The other day, as I was picking him up from school, I noticed that he was wearing his ball cap on top of the hood of his jacket. It looked a little silly to me, so as he got in the car I mentioned to him that it was supposed to go on his head. He told me that he knew, but that’s the way he wanted to wear it. Good enough for me, but not good enough for his younger sister, who also remarked upon it when we picked her up at her school. He told her that he wore his hat that way because it looked weird and that’s the way he liked it. “Cool!” she said, in her typically enthusiastic way. It hit me then – her approach to him went from derogatory to celebratory just because he displayed some confidence in his approach to life. Why can’t we all be that brave and strong?

Most fourth graders want to fit in. Mine’s ok with standing out and being his own person. I can attribute this directly to his autism. He honestly doesn’t care what other people think of him. He’s empathetic towards others, but he’s self-possessed enough to not really care about their feelings towards him.

This gift of his has helped me be a better parent. I don’t try to make the kids be how I want them to be. I try to let them be the best person they can be.They only get one shot at their life. It should be theirs to live for themselves, not to live for what I want. If I don’t have expectations about how they will be, I’ll never be disappointed that they didn’t turn out that way. That’ll just leave me more time to love them for themselves, which is what a parent should do.

‘Tis Ausm!

Today is Autism Awareness Day.  In fact, April is Autism Awareness Month.  So much awareness directed toward something I can never quite forget.  You see, my son has Autism.  It is as much a part of him as his beautiful green eyes, wavy hair, fantastic sense of humor, and bright smile.  It’s not something I’d change about him, nor is it something I think he’d want to have changed.

So many people are unhappy with the way they are.  They change their hair, makeup, body parts, clothing, anything, just to be happier with themselves, or to make others happy with them.  The Son, at 10, is one of the most self-confident, self-assured, and self-aware people I know.  This may change as he navigates his teenage years, but for now he’s comfortable with who he is.  He can articulate the intricacies of how autism affects his life, even if he doesn’t realize that autism causes them.  What a gift it is for him.  He’s comfortable being himself.  It’s others, including sometimes his father and I, who have the difficulty of accepting him the way he is.

Being diagnosed with Autism means that the Son get a lot of services from the school.  He’s had an IEP since preschool.  No one has ever contested his diagnosis.  Indeed, his doctor once remarked that the Son was one of the kids the cleaning crew could diagnose.  One of the services he’s given is social skills training – teaching him how to get along with others in society.  I’ve often remarked that it’s those in the world around him who need the social skills training.  We can teach him how to deal with them, but they need to be able to deal with him.

Take lunchtime, for example. The Son explained to me that he was trying to sit alone when some other kids wanted to sit with him.  He’s trying to decompress while they are trying to spend more time with him. He’s lucky – he’s quite funny and apparently well liked, but he has very little desire to have friends.  How can we figure out how to get him to spend more time with other people while at the same time get them to not spend too much time with him?  Such are the mysteries of Autism.

He has it easier at home – we understand him here.  Still, we fight to get him to be more social overall.  That sometimes means accepting that he’s had enough, and other times encouraging him to spend just a bit more time with us.  We get him to have dinner with us at the table, but acknowledge that he has no interest in lingering long past mealtime to chat with others.  At the same time, we try to be available when he is feeling social.  The ride home from school is prime time for him – he’ll talk nearly non-stop during the pick-up time for his younger sister but then head to his room as soon as he gets home.  He needs that time for himself.  Other times he’ll come to us for a snuggle and a chat before announcing “end of conversation” and walking away.  He’s not trying to be rude, he’s just done with interacting and needs time to process.

Those conversations, however brief, are fascinating.  The things that come out of his mouth are often heart-breaking or jaw-dropping.  He makes observations that most adults aren’t capable of.  Maybe all that lack of socializing gives his brain time to produce genious thoughts?  Of course, the conversations are also peppered with 10-year-old-boy-isms.  He does have some age-appropriate behaviors, even if he tends to express them in language that often sends us to the dictionary.

We just need to finesse certain behaviors so he blends in with society a bit better.  At the same time, we need to realize that just because we have certain social needs, doesn’t mean his are the same.  He just has just a different way of doing things.  Not wrong, just different.  He is an like an anagram – same little boy like so many others, but put together a bit differently. Just like Autism = ‘Tis Ausm.  And he is, indeed, quite awesome.