every little thing…is okay

Jim and I were in a new doctor’s office the other day answering an hour and a half interview about Jordan.  I’ve lost count of how many doctors we’ve had these conversations with at this point. Much less than some people I know, but more than I care to think about…six, eight? I don’t know.  We get to the part where they ask about his birth.

“Was it an exceptionally stressful time?” Is there really part of the last 15 years that wasn’t exceptionally stressful? I can’t remember.

“Was it a typical birth?” As typical as a planned C-Section is, yah.

“Was there any concerns immediately after delivery?”  Well, his initial APGAR scores were low and it took forever for him to cry, but within a couple of minutes no one was worried anymore.

Jim chimes in.  It wasn’t that long, babe. It was all less than a minute; it just seemed really long.

He and the doc share a knowing glance…

Well, here we are again. Me trying to come up with reasons that force it all to make sense.  I could see on the doctor’s face, this isn’t new to him. I’m sure moms everywhere are trying to put their finger on the WHY, even after we know there’s no way of knowing the why, or maybe the why isn’t a why but more like 50 whys. Or there’s no why at all.

But I want a why. I want to blame something. someone. even if that someone is me, that’s okay.  I get tired and I want answers, so then I can finally fix it. I’m a fixer.  It’s really the worst thing you can be when you have a kid who isn’t always typical, because…there’s just no fixing some things.  And then you feel guilty for even thinking that your perfectly amazing child would ever need fixing.  And so the cycle goes.

These past few weeks have been a little more challenging than normal.  Not with Jordan; he’s actually excelling, I think.  It’s been challenging just within our family as a whole. Finances are tight, as they are this time of year: recovering from the holidays, paying for sports fees and gear, a huge car repair bill – the usual stuff.  But the usual stuff sometimes feels more stifling when you’re a one income family.

Years ago, we made this decision. We will sacrifice financially so that I can be there for both of the kids in the needs that are unique to them.  There have been times when I’ve gone back to work when we really needed it, or when we thought the kids were ready, but then realized maybe they weren’t. I’ve owned and run successful businesses from home, but it always ends with us feeling like the kids are taking a back seat and that I need to focus on them.  It’s hard – finding that balance. It’s hard for everyone.  I think, and I’ve heard from others too, it’s even harder when your family is a little more than typical.

Studies say the average family with a special needs kid spends $17,000 more per year than other families. Co-Pays and prescriptions alone add up to more than half of that in our family (never mind deductibles that I don’t even want to think about.) Then you have therapy expenses, special purchases, and the truck loads of kinetic sand and silly putty I’m constantly searching for, and…you get it.  I’d say $17k is the understatement of the year.  Sometimes I just have to acknowledge these things to keep perspective.  Sometimes I just need to tell myself it’s okay.

It’s okay that I don’t bring in $60k+ per year like most of the women my age and with my background.  It’s not time for that.  It’s okay that sometimes money gets tight and the only explanation I have for that is that “shit gets hard sometimes and we just have to get through it.”  It’s okay to feel suffocated by all of the needs and demands and “I DON’T FUCKING KNOW RIGHT NOWs.”  It’s okay.

It’s okay to not have the answers.  It’s okay to need to cry when no one is looking for no reason other than I can’t stop the tears from falling.  It’s okay to be sitting in a therapist’s office answering intake questions about my son and suddenly realize everyone in the room knows that I’m probably the one that most needs the therapy.

This is being mom to someone that needs more than the “average” kid. Whatever that means. And we’re all okay, or at least we will be after a hot bath and a good cry.

 

 

 

 

the best /adult/ part of the season

Every year Jimmie and I host an adult only Christmas party full of shenanigans and with a ridiculous theme.

See…shenanigans.
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We used to host it at our house. (This pic was at our house during the “Christmas Vacation” themed party. I would never allow myself to wear pants that uncomfortable and, quite frankly, UNFLATTERING out in public- and we won’t even talk about Jimmie.)  A few years ago, the party outgrew our house.  We wanted to keep up the tradition, and wanted to make it open for our friends to bring their friends, so we created the Annual Christmas Crawl.  You guys, this event is quite honestly the best thing you can experience in your life, if you like to have fun.  It’s ridiculous on so many levels I can’t even tell you.

What’s a Christmas Crawl, you say?  Quite simply, it’s a pub crawl through the most amazing dive bars in our neighboring small town you can imagine, right in the middle of the most stressful time of year.  Every bar has a challenge or activity and it’s just seriously the most fun you can have within the law (mostly.)  This year’s “guests” topped out at around 60 people when everyone was actually present and accounted for.  There was a lot of wandering aimlessly by some people and a few “oh my god, does anyone have eyes on _____” a few more times in the night, so I don’t think we were ever all actually together.  Grown ups have a lot of stress around the holidays, and an adult night that isn’t spent with your work people, your family or your kids, tends to get a little bit rowdy.

The beauty of the Christmas Crawl, is that it’s an open invite for anyone and everyone. We start by inviting our friends, and we all but beg them to invite their friends.  Like most people our age, we have friends from a lot of different circles of our life. Everyone from family members that we love hanging out with, to friends from our kids’ schools or sports teams to neighbors to the “how did we even meet?!” friends.  This means, the friends of friends crowd is even more diverse and eclectic.  It’s amazing!

We start the night an awkward group of people that loosely resemble middle-schoolers lined up on the opposite sides of the gym at our first school dance, and end the night with some dude you don’t know nestled in your bosom while your husband holds him up and his wife swears he’s been roofied because this is SO out of character (and it truly is.)  It’s truly the most magical time of the year. This year was especially amazing, because around stop number three or four, we just starting adopting people from the bar into our group.  We seriously made friends with a guy who Jim and I immediately made our Facebook friend and decided was now part of our family whether he likes it or not.  He’s front and center of our group photo from the night, as he should be!
christmas-crawl-group
(This is just a sample of the group, hopefully small enough to protect the identities of the innocent.)

This year’s theme was holiday/festive pajamas.  Jimmie was Olaf and I had some ridiculous winter onesie on.  It was…epic. I tried to think of any other word to use because that one is so done, but that’s really all I’ve got. Jimmie in a giant, white, fictional snowman pajama suit can be nothing less than epic.  Most of our friends got into the spirit of it all, and those that didn’t were wishing they did by the end of the night (whether they admit it or not.)

olaf-christmas

EDIT- Jim just read this and demanded I add funny details for everyone to experience…

My favorite part of the night is a little game I like to call drink or dare. It’s full of stupid challenges that intend to 1) break the ice among strangers and 2) embarrass as many people as possible. Some of the challenges are mild: high five every person in the bar, call everyone “Chief” for half an hour and take a selfie with a stranger are a few of my faves. Other challenges are a little silly: every time you laugh pump your arm like Tiger Woods…you get the drift. My personal favorite was “go caroling with a group of friends.”  Imagine your family sitting in a cute little pizza place and a group of strange, possibly drunk, men coming around in their pajamas singing Christmas carols. That happened. And here’s a little video of a small part of those events…


One of our friends was dressed in a Rocky onesie. Everywhere we went he sang the theme song and raised his arms like the champ. Everywhere. And then there was our group Santa Clause. This little outfit is probably illegal in most states. 


I’m honestly not sure why the town of puyallup even allows us to keep doing this year after year. We are complete menaces. 

Probably the most fun event of the night is the photo scavenger hunt. Here’s a pic of the challenges…


It’s amazing what total strangers will do for you to help you win a stupid scavenger hunt that has no real prize. 

I have no other point to make except to tell you that you need this in your life.  Start planning it now. Make a reason to get all of your friends together for something like this- or however best fits into your life.  It’s the best grown-up part of our holiday season.  We walk away amazed at the friendships and love that we have in our life.  Wishing you the same joy and love in your holiday season…

 

 

 

 

so i guess this could be the end

Jordan says he’s quitting football after this season. He didn’t say it flippantly or because he had a bad game. He said it like he’s been thinking about it for days and finally just spit it out because he couldn’t take it any more.  He said it even though he knew my initial reaction would be disappointment.  He said it because he genuinely doesn’t want to play his favorite sport anymore.

I need to say that out loud, but I can’t yet.  Not because I am a crazy sports parent that thinks my kid is going to go to college on his athleticism. Not because I think he’s the best thing to ever happen to football, but because football is the best thing that’s ever happened to him.  Until now, football was the one thing he didn’t struggle at more than the average kid.  During the football season, he has always excelled- in school, at home and on the field. His confidence has always been on a whole new level from July through October.  Putting his pads on and stepping on that field brought a light to his eyes and a swagger in his steps like nothing else I’ve ever seen for him.

And now that light is gone.  As stupid as it might sound, that hurts my mama’s heart.  It’s just really hard to see your kid lose his passion for something that he genuinely loved, and know it has very little to do with him, and much to do with a lot of things beyond his control.

Having a kid with Aspergers is never easy. It’s a constant dance for me – don’t be too easy on him, but definitely don’t be too hard; don’t make excuses for him, but be realistic; be patient, but for godsake don’t let him just run me over.  If I, his mother, trip over my own feet, of course I can’t expect his coaches or teachers or friends to be any different.  I guess that might be the hardest part.  I sure can’t keep him in a bubble, but putting him in situations where I have to trust people I’m not sure I should is exceptionally tough.

I know his confidence is more fragile than the average kid. He might pretend like it’s not- like he’s oblivious to things that others aren’t, that it doesn’t affect him the same, but it does.  He sure as hell won’t talk about how he’s feeling, until he does. And at that point, his mind is made up and the stubborn determination that he’s doing what he just told you he’s going to do settles in.  And so now what?

When I told him we could just switch teams next year and start over, he told me “it’s too late. I just don’t belong playing football anymore. It’s just not my sport like I thought it was.” And my heart broke. Because it’s just not true, but I don’t know how to convince him of that.

My morning has been spent trying to figure out how we come back from this. Listening to his dad fight back tears when I told him about our conversation. Trying not to be angry. So I come here, because this is where I always go… when I can’t say the words out loud.

 

trenches

I made a comment on the Facebook a couple of months ago about how I miss the olden days of “mommy blogs,” and what they meant to me. I can’t even tell you how many of my friends were all “preach it sister! We need to bring back the good ol’ days!” (or something far more profound than that.)

Years before this particular blog transpired, my daily lifeline was the blog I wrote when the kids were babies.  A stay at home mom of two little carpet monkeys, deep in the trenches of lifeMySpace and my blog were my life’s blood.  There were mornings I’d stumble to the computer with a baby attached to each limb just to reach out to someone who could relate. –You guys, this was before the smart phone.  There was no rocking the baby while browsing the Facebook (There was NO Facebook.) This was haul out your laptop (if you were so lucky) and hope that the typing sounds didn’t wake the precious little life-drainer.  There were no baby wraps and slings- we balanced those little buggers on one knee and typed with one hand. This was OG real shit. God it was good.

As women, we were a unit.  We rallied around each other when the nights were long and sleep was short.  We congratulated each other on showering and the ability to survive “crying it out.”  We reminded each other to put on our big girl panties and press on through the tantrums and puke-fests.  We cried together when jobs were lost and cross-country moves were made.  We cheered one another on when we managed to handle whatever curve-ball life threw at us.  And we high-fived each other when we somehow managed to sneak in sex and actually enjoy it.  We were REAL, and we saved each other.

I mean this with the utmost respect, but these young/today moms don’t know what they’re missing. I love that they have their instagram and their communities and their pinterest-worthy etsy creations (whatever they may be,) but it’s just not the same. If I were a young mom today I would hide in the bathroom with a bottle of wine and cry myself to nap time. There’s so much damn pressure.  All this “what I’m doing now” staged photography and “join my circle” stuff I can’t even begin to follow makes my head spin.  Girl, if someone told me to take a selfie and post it for my “community” when I was in the trenches I would have asked how much they’d been drinking and did they have more to share.  A SELFIE! After three days of no sleep?  How about you go and fuck yourself?!  Here’s a photo: my dog puked on the floor and my new crawler decided today would be a fun day to discover finger painting. How’s that for a photo op?

I LOVE that things are evolving and social media is what it is.  It’s still somewhat of a lifeline to me, but I don’t have time to stage my house to look like it’s clean so I can take a “what I’m doing now” selfie.  My kids may be in school, but one of them has been sleeping on my floor for three weeks because that damn XBox game with the zombies scared the shit out of him. And I can’t sleep with him snoring at my feet! I’ll pass on the selfie documentation of these bags under my eyes, thankyouverymuch. There’s no less than 6 loads of laundry on my dining room table because my back has been out for days, and I think my dog just peed somewhere. That makes a lovely photo backdrop, right?

My point? It’s just too much. But I do miss having that kind of community.  I miss my ladies laughing and high-fiving, and even crying through the cyberspace together. I miss the men stumbling into our world and getting a brief “oooohhhhh” moment and understanding just what the hell was going on in our minds.  (Or an AAAAAHHHHH moment and running away for dear life!)  I miss the encouragement and the camaraderie.

This past month the OG mommyblogger of us all, Dooce, hung up her keyboard and is moving on from the blogging world.  (Real talk, I didn’t even know she was still blogging.  I kind of assumed that when I stopped so did everyone else. Because…I’m self-involved?)  Heather was a pioneer of mommyblogs.  She made people want to lay their shit bare and gather round one another. When I read about her decision today it made me sad.  Not for her, but that we’re in a time that people don’t gather around one another and push through the trenches together.  People clean one corner of their otherwise CRAZY house/life so they can snap perfectly filtered snapshots of their tidy little life to impress one another.  I’m sure their communities are encouraging and uplifting in their way, but it’s just…not the trenches.

Motherhood is raw.  It’s messy.  It’s ugly.  No instagram filter can hide the vulnerability of motherhood. So who do these women have?  There are people that I love and eternally respect because of the bond we made in the trenches. I ache for those relationships some days.  It’s been twelve years and I still need them on days that my daughter rolls her eyes at me and stomps away. (Usually to remind me that she’s just like me and that yes, I must actually let her live to see another day.)

I want us to revive the trenches.  I want to walk through the next twelve years of motherhood with the same community I started the first twelve with.  I want to show the younger moms that the trenches of motherhood are filled with a love and beauty so deep that a filter can’t begin to mimic its glow. I read about the “Mommy Wars” and I just shake my head.  We had mommy wars, but we were all fighting for the same thing: survival.  If you’d stop trying to make yourselves look so damn perfect,you wouldn’t have the burning desire to tear one another down. (I mean, there will always be that guy, but I just don’t think to the extent that we see now.)

I don’t know, maybe this is just a pipe dream, but I think it might be becoming my dream.

elle1

there’s rarely a time when facebook isn’t to blame.

If you follow me on facebook, you probably saw that photo yesterday.  Elle was home from school and locked in the office for a long time on the computer.  I thought she was working on schoolwork that she was missing while home playing hooky. I was such a proud mother.

Then, about an hour and a half later, she came out of the office and gave me a huge hug. And then began talking about a million miles per hour.

I found your blog, mom.  And it’s AMAZING.  I’m so glad you’re going to start writing again.  You are soooo good at it.  But wow, you really swear a lot.  I mean, A LOT.  It’s okay though because it kind of makes it so much funnier.  But wow. You swear a lot.  I mean. A. lot.

I had a moment of sheer panic. How on earth was I going to explain and justify and try to re-hide this from her? HOW DID SHE EVEN FIND IT? Ohhhh…the Facebook.  Damn that Facebook.  This is exactly why I have never accepted any friend requests from my friends’ kids.

That picture up there is the face she made when I asked her how she felt when she discovered the blog. Hahaha. She is hilarious.  The nice thing about having an incredibly mature tween child, is that you can mostly just be you, and they can be them, and life just works.  If she sees a blog post that makes me a little more human and flawed and easier to relate to, I’m okay with that. I may have to limit her exposure to topics that are too mature for her or more embarrassing than either of us wants to live through, but so be it.

I started writing when Elle was three.  Part of that was so I could leave something of myself behind for my kids after I’m gone- a way for them to know their mom forever, and witness my struggles and successes firsthand.  I don’t lie to my kids and I answer all of their questions as honestly and candidly as they are mature enough to handle.  I’d say very little about me will surprise them, especially Elle, at this point.  That’s not to say I’m going to give her unlimited access to this blog.  Not yet, anyway.  Jimmie and I are smack dab in the middle of a 30 days of sex challenge and I doubt she’s going to want to hear anything about how it’s changing our marriage. After thirteen years, sometimes you have to set alarms and reminders, folks. It’s a sad, sad truth. 😉

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what do you title a blog post after being MIA for years?

There’s a solid chance three people will read this.  I am kind of confident people don’t even blog anymore.  I’m not even kidding- the new kids have instagram and tumblr (is that even still a thing?) and, honestly, I don’t even know what else.  I think we all know I can’t speak my mind in 140 characters, so that’s out.  But, I’ve had a few things happen recently that has given me the itch. (to write. that’s it, promise.)

Someone must at least read blogs somewhere, because I’ve had three completely unrelated people ask me what the heck happened to me and the blog in the past two months.  I’ve been desperately needing my therapeutic outlet, and Jimmie all but scolded me yesterday (okay, he scolded me, the jerk!) for neglecting this process and my voice.  So…there you have it folks, I guess I’m back to blabbing on this blog.  I can’t guarantee it will be often, but let’s face it, it hasn’t been often since the days of myspace.  Yipes.

I know there are people that leave their blogs for months at a time and then come back like it’s been a week and pick up where they left off.  I don’t know that I can do that, so I have to at least give a little rundown.  I hope you’ll just bear with me. My last post was 18 months ago and it could barely be called a post.  I guess the last time I really wrote anything of significance was when we began pursuing diagnosis for Jordan and ADHD.  YowZa, that seems like a lifetime ago.

In the time since Jordan began therapy and treatment for ADHD and SPD (when I last wrote,) he has since been diagnosed with Aspergers (no longer even the clinical “label” as it all just falls under Autism Spectrum Disorder now, but I digress.)  I guess that was the beginning of the end of writing for me.  I don’t feel like I can just skim past that point. Maybe that’s where we’re going today.

I have to be honest, I was not able to authentically be me on this blog (or otherwise) when we started this path with Jordan. I think anyone who has read me or known me for any length of time knows, if I can’t say what I want in the way I want, I can’t write or function in any way really.  To express the feelings I had when this journey began with Jordan, was just too raw for me to express publicly or even to those closest to our situation.  I very much went into a protective cocoon for…too long.  I guess this is my coming out party.  Here I am, a beautifully flawed mother butterfly, just trying to lead my baby caterpillars through the beginning stages of their own life metamorphoses.  (I also should tell you I’ve become quite poetic while I’ve been gone, in case you didn’t notice.)

It’ll probably take a little while for me to get whatever the writing version of “sea legs” is back underneath me.  Just these few paragraphs are kind of agonizing. It feels like part “holiday card brag letter” and part “miserable group therapy session.”

The fact of the matter is this: I am crazy in love with this life I live.  It’s so incredibly complicated and full of drama that is complete bullshit half the time. I am surrounded by the most bat-shit crazy people you could possibly imagine.  We are so flawed and imperfect and fun and just wicked wonderful.  My children are so imperfectly amazing, I simultaneously want to kiss them and kick them in the shins every single day.  My husband is a saint of a man who also makes me want to spit in his coffee at least two days a week.  My life moves in contradictions.  I think (God do I hope I’m right about this) that most of the people around me feel the exact same way, at least part of the time.

In order to be who I am, I have to release those contradictions into the universe from time to time.  I guess that is where this space of my life comes in handy… I hope there’s still one or two people in the world that will join me here. I like it when there’s at least one person who will high five me for spitting in the morning coffee.

This is my sanctuary.  This is where I find my peace.  This is where you can find me…

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week one.

Jordan has been on a minimum dose of a common stimulant treatment for ADHD for one full week. Jim and I just keep looking at each other shaking our heads in disbelief. The child we see is such a dramatic difference than the child we are accustomed to I can’t even tell you. The positive changes are really remarkable. The side effects are actually very minimal to this point.

I decided to keep a log of all of this for two reasons. One, I want to be able to look back on this for us and for whatever use we will have. Two, once we are comfortable with where we are in this process and how Jordan is doing, I want to be able to share our journey with other moms and dads and caregivers. As we sat in our IEP meeting today, one of the counselors told me I should keep notes so I can share one day with others. I just giggled. She doesn’t know about my compulsive writing of all the details. Ha.

So, as I said, week one has been mostly euphoric for Jim and I. The doc told us we should see results of the meds within around three to five days, but that some effects could be seen right away on day one. So we were hopeful that we’d see some little something on day one. We didn’t expect it, but we said we thought it’d be great if there was something.

I gave him his first dose, told him of all the things I wanted him to pay attention to in his body while he was at school, and I put him on the bus. Just like any other day. HA! Then I emailed the teacher, his primary counselor and anyone else with a pulse at the school and asked them to be watching him closely. “Watch for tics and increased stuttering. Watch for fits and aggression. And for God’s sake please let me know if he looks like his pulse is racing.” Or some version of this.

Jim stayed close to home and worked on some projects. I think he mostly just knew I was going to drive myself nuts all day worrying and wondering. I walked to the bus to meet the kids and waited anxiously for him to do his usual descent from the steps and run my way screaming and wildlike. He sauntered down, strolled my way and gave me a nonchalant “Hey mom, what’s up?”

What the WHAT?!?! Who was this child?

He spent the better part of the last week being himself, but a little more chill and a lot more “I can’t put my finger on it but something/almost everything about that child is different in a very good way.”

We were around 5 weeks worth of homework behind. It’s not that we don’t work on homework with him every night, it’s that it takes so long we just can’t keep up with the class. This week, we did one week’s worth of work each night. Yes. We are now caught up. And he wanted to do homework. He asked to do it. He was proud of his work and he mostly understood what was going on. It honestly felt nothing short of miraculous.

The downside? He can’t sleep as well. At least the first few nights he really couldn’t fall asleep for hours. It took its toll on him. He has been taking Melatonin to help him fall asleep for a few years. We made sure with the doc that this would still be okay and continued as usual. Night one I had to triple his dose to get him anywhere close to falling asleep. No biggie- he wasn’t taking much to start with. It’s still a healthy level. The last few nights, it hasn’t taken as much.

The last few days have had a few changes. He’s still pretty level. The only difference I’m seeing is more of a “sensitivity.” He’s a little crankier than usual. He has had a couple of meltdowns when he doesn’t get his way, which wasn’t happening the first few days of meds. It is pretty typical from before meds though. I almost feel like his body/brain are getting used to the meds and they aren’t working as well. But, he also has a cold and it’s been a very long week of working double time on homework catch-up and his body getting used to this new normal. So I could be wrong. It could be anything. That’s why the doc has asked us to wait a month before re-evaluating his dosage. I’m sure there’ll be plenty of ups and downs.

So far, I’m glad it’s mostly ups! No side effects except the decrease in appetite (we are not concerned about this one!) and the sleep thing. So far, so good.