Winging It

You could probably safely call me a control freak, with a side of OCD. It’s just who I am, how I’ve always been. I’m a neat freak. I like things in their places. I crave order. I love routine. Change is difficult – it throws me off my game. I’m a planner, down to the smallest details. I hate when plans are derailed. Know what challenges all of that? Having kids, and living life.

We had Little Man’s birthday party Saturday evening. Now,  he is kid #3. I’ve spent sixteen years going crazy over birthday parties – handmade invitations, sleepovers with 13 kids, tea parties, American Girl trips, Pinterested out decorations/cupcakes/games. When he said he wanted a sleepover, I shot it down. First, I’m tapped on the sleepover birthday parties, seriously., and it was the night before I was running a 15K race. No go, my friend. His second idea was a trampoline park. Oh yeah! 1) I love any party that’s not at my house; 2) I wouldn’t’ have to provide any entertainment; 3) Food and drinks were included; 4) Did I mention it wasn’t at my house?

And so let’s just say, I was purely focused on the detail of getting the kids there, bringing them home, and the cake we were allowed to bring in. Have I mentioned things have been a little crazy around our house lately, and that I had a nine-mile race to run the next morning? See where this might be headed?

First off, Little Man, while having good friends, does not have a ton of friends, so his party was small. Spouse was at a golf tournament, so I was the solo parent. The trampoline park set aside three tables for us in their party area – THREE! We all fit, with room to spare, at one table. I put the cake and gifts on another table just so we wouldn’t look so pathetic. We also didn’t have any decorations. He isn’t a little kid, so there wasn’t a theme involved, and honestly, decorations never even crossed my mind. While the kids jumped, I sat there, by myself, at a huge, empty table, no decorations, not a ton of gifts, no other adults. #loser

I also didn’t bring any extra snacks or drinks. I knew pizza and soda were coming, and we were only there for two hours. So imagine how amazing I felt when the kids came back to the party area looking for hydration? I gave them a few dollars to get waters out of the machine as our sodas weren’t coming for another half hour.

Then it hit me….I had cake, but I hadn’t brought enough candles. neither did I have anything with which to light the candles I did have. I didn’t have any cake plates, nor forks, nor napkins. Even more, I didn’t have a cake cutter. The kids figured out something was going on, and I was honest with them. They just started laughing. So did I. Stress broken. We joked about using one of the paper pizza plates to cut the cake. When we did sing, “Happy Birthday”, a few of the kids held their fingers over the cake as imaginary candles.

They all helped clean up when we were ready to go. I checked out while they headed out to load up the car. When I arrived at my car, the Princess asked if the cake cutter the park had loaned us was ours to take. They’d efficiently, in their cleaning and gathering, packed the cake cutter in the cake box. Hysterics ensued. P took the cake cutter back into the trampoline park, from which I’m fairly sure we’ve been blackballed. And oh man, did we all laugh on the way home. I apologized for being a loser, overwhelmed mom, and for messing it all up. One of the boys said, “This is the strangest, but most fun, birthday party I’ve ever been to,” and one of the girls said, “I wish my mom were more like you. This is fun.” Hah!

Not one of them cared. Not one of them felt the party was ruined by my phoning it in Everyone had a good time. Everyone had enough to eat. Everyone jumped and had a good time.  That’s all that matters right?

I’m learning you don’t always have to plan to the last detail, especially when it comes to kids.  Sometimes things turn out better when you just wing it, rather than stressing about every little thing. And often, when you admit you’ve messed up, and are able to laugh at yourself, everyone around you will have your back. I can’t control everything. I certainly can’t control everyone. I’ve learned that while my need for order, control, organization, and routine is okay, it isn’t the end of the world when things don’t go the way I planned. Sometimes,  you get a better result when you epicly “fail.”

And I thought that was hard

Big Man was born 3.5 months too soon, and spent ninety-three days in the NICU. I spent countless hours driving back and forth to spend countless hours sitting by his isolette. I watched him forget to breath, watched his heart rate drop, watched him turn gray, watched him battle his own infections, watched machines keep him alive, watched him fight to survive. And I thought that was hard.

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Big Man on his birth day

Big Man came home from the NICU, and we had a home health nurse out every other week, a developmental specialist out every month, bi-weekly doctor visits for weight checks, monthly doctor visits for synagis shots to keep him from getting RSV. My life, my schedule was not my own. He didn’t want to be put down, ever. I had to learn to let go of my want for routine, schedule, time. And I thought that was hard.

When Big Man was four months old, I discovered I was pregnant with the Princess. I faced a pregnancy certain we were going to be back in the NICU. I was full of fear and anxiety. I saw a specialist OB (perinatologist) every other week, until we got past the gestational age Big Man was born. Then she had to be induced at 41 weeks 1 day. And I thought that was hard.

Big Man was developmentally nine months old when the Princess was born, so I basically had two infants under one roof. They are twelve months and nineteen days apart. Sleep was at a premium. Bottles were everywhere. We all three cried for hours every evening. And I thought that was hard.

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Big Man had high muscle tone on his left side, and a mild speech delay. Enter therapists visits to the weekly routine. And I thought that was hard.

When Big Man was nearly two, and the Princess eight months old, we moved….400 miles away.  I left my career of ten years. I left my family. I left my friends. I left my church. We moved in with spouse’s  (awesomely amazing) parents for eight months while our new home was being built. I found a new job I hated. It took forever to build new relationships. I had two toddlers in a new place, and I wasn’t entirely happy…yet. And I thought that was hard.

I had two toddlers under one roof – two toddlers who were like the wonder twins. I couldn’t keep up with their creative disasters. They finger-painted with baby shampoo in the middle of Big Man’s room. Baby shampoo NEVER comes out of carpet, ever. They unraveled a Costco-sized package of toilet paper up and down the upstairs hallway. They threw another Costco-sized package (out of the plastic wrapping) into my big jacuzzi bathtub. They ran away, down the street and around two corners, while I fed their six-week old baby brother. Big Man cut ALL of the Princess’ hair off, to the scalp, twice. They colored the underside of the pool table. I caught them, frequently, eating frozen waffles underneath the dining room table. Ditto bags of candy they’d climb on top of the fridge to retrieve. And I thought that was hard.

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I had three kids under four. I can’t even list all that drama, but I thought that was hard.

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The Herd in earlier days

There was a time they were all three involved in multiple sports….baseball, soccer, dance, piano lessons, golf. I lived at whatever field it was the season for.  I spent hours and hours in the car getting them each to whatever practice, game, lesson, or recital. And I thought that was hard.

Big Man was diagnosed ADHD, and with a mild visual processing disorder in second grade. We chose to medicate the ADHD. He fought the medication for the first year. I’d find pills hidden in the kitchen drawer, under the lazy susan in the middle of the kitchen island, and pretty much anywhere but in him if I didn’t watch him take it and make sure he actually swallowed it. He got glasses, and we got an every-six-months schedule of appointments with the pediatric opthamologist. And I thought that was hard.

I had three in elementary school. I went on field trips. I taped, glued, cut, copied, read to kindergartners and third graders, ran the book fair, was on the PTA, and basically lived at the school. We lived in nightly homework hell. And I thought that was hard.

Little Man was diagnosed on the autism spectrum, and ADHD, in second grade. It nearly broke me, but we finally had an answer, and a plan, and help. We entered the world of IEP’s, special education, accommodations, speech therapy, psychiatrists and therapists. And  I thought that was hard.

We moved on to middle school for the older two – ugh, middle school and middle schoolers. They each got their first phones, and we had to start talking about internet safety, data plans, and had to come up with rules of how we would handle things. And I thought that was hard.

Now here we are…..two days away from having three teenagers under one roof. Two are in high school. I was ill-prepared for the drama, the angst, the emotional rollercoaster, the pushing back against rules we’ve had in place forever, the angry words that instantly bring tears to my eyes, the eyeball rolling, the intense search for independence, the life-lessons they are learning through which I just want to help but know I need to stand back and let them have at it, come whatever the natural consequences will be. I’ve watched my biggest baby boy struggle to find his way academically when it used to come to him so easily I think he took it for granted. I’ve watched P fight to find herself – somehow losing (hopefully temporarily) the brave, bold, confident girl we used to know. Then, recently, came the day Big drove himself and P to school, his driver’s license finally earned. And I think this is hard.

Within the next five years, I will watch as they have all the rest of those “firsts”, as they graduate, and leave for school, only ever to come back for what will essentially be visits between semesters and school years. I know I will look back on all those things I thought were hard and will know that was nothing, because watching them go be their own people, away from us, my heart living outside of me (possibly far away from home), now that, that will be hard.

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The Fixer

I’m a middle kid. Well, I’m actually one of seven siblings, but I’m the middle of three who grew up in one household together. Family is complicated, isn’t it? Anyways…I think I’m a pretty typical middle kid – overachieving (when I was younger….now I’m respectably average in pretty much all I do), perfectionist, self-driven, super organized. I was the mediator growing up. I liked to smooth the way between people, particularly my siblings. I translated, repaired the communication lines. I needed everyone around me to be happy, and would do all I could to make it so. I also flew under the radar a lot.That was my happy place. I tried desperately not to make waves, not to disrupt, not to make anyone unhappy with me.

It can make a person a little bit neurotic and anxious, trust me. It took me years to figure out what I was doing, and to learn to take a step back. I was not responsible for the happiness of every person in my life. It wasn’t my job to make everything happy and smooth for them. I shouldn’t change myself, or give up my voice, just because someone else might not agree, or it might cause some tension. I needed to learn to let go, a lot, especially as people will still make their own choices/mistakes. At the same time, I struggle incredibly with conflict. It makes me super uncomfortable, even now.

I was doing really well with the letting go, the backing away, the putting responsibility for a person’s happiness back upon that person rather than taking it upon myself. Then I had kids, and those kids grew into big kids, and now teenagers. I want, so much, for them to be happy, for their lives to go smoothly, to ease their paths. But guess what? Teenagers don’t listen to their parents. We’re the morons who know nothing, aren’t we? I remember that distinctly from when I was a teen. That’s fine. I can take it. But oh, when things aren’t going well, it’s all I can do to not try to mediate, translate, offer some suggestions. That middle kid syndrome is back in full force. They’re my babies – I do hold some responsibility for their happiness, don’t I? So I’m fighting myself to just step back. They   have to learn, on their own, in their way, in their time. It’s part of growing up, becoming independent, preparing to be out in the world on their own.

Middle kids – we like to fix, make happy, help create smooth paths. It’s what we do. We are, after all, in the middle.

The Healing Baby

Little Man will turn 13 later this week – that’s right, we will have THREE teenagers under one roof. (send wine)  He doesn’t seem thirteen to me. It doesn’t seem possible on the one hand – it feels  he was just born. On another hand, because he’s autistic, and because he’s the youngest of our three, he just seems so much younger than Big Man and the Princess seemed at thirteen. Is that always the case with the youngest?

I knew, even after having our boy, and then a year later, our girl, that I wasn’t done, for many reasons. I’d always imagined myself as a mother of three kids. I didn’t feel done with having babies, although Spouse would have (back then) been good with just the two we had. In my heart, something was missing. More than that, I was hurting. I’d suffered a miscarriage, I’d had our firstborn ridiculously early, my pregnancy with the Princess was full of stress and anxiety we would go through another premature birth. I needed a pregnancy on my terms.

Little Man was just that – a pregnancy on my terms. He was my happiest pregnancy, even with that awesome morning-but-really-all-day sickness during the first trimester. I was relaxed. I was calm. I was so happy. I sang to him, I talked to him, I played music for him, I constantly had my hand on my belly. The day after my due date, having been dilated to 3cm’s for almost three weeks, I was induced. He took his time coming out, and there were a couple of hours of stress, but then he was here – the only baby put on my belly at birth. I fell in love instantaneously.

I won’t lie and say that day was perfect. We did have some stressful hours that day. He wasn’t in a good position, I wasn’t progressing, and then he started having some heart rate decelerations. We talked c-section, but then my doctor got him shifted, and things went quickly from there. Little Man had some junky breathing hours after birth. He spent some time in the nursery, and there was a brief consideration of sending him to the NICU. But then they brought him to me, and I held him, and he settled.  His first two nights home, he didn’t sleep, at all. I did, for real, fall asleep standing up. But day three home, he became the perfect infant, for the most part.

Before I got pregnant with Big Man, I had dreams of a very blond little boy. Well, Big Man was born with platinum hair that all fell out, and came back in brown. Little Man was that blondie I dreamed of, to a T. He was my healing baby – he helped me recover from all the pain, fear, guilt, grief of a too-soon birth, and then a too-soon pregnancy right after our NICU stay. He was my baby, my way.

When he was diagnosed on the spectrum, I remember feeling somehow that healing was being torn away. My perfect pregnancy, near-perfect birth, perfect baby wasn’t perfect anymore. But then a beautiful friend reminded me a diagnosis doesn’t take away who he is, how he came to be. Autism couldn’t touch how I felt the day he was born – all those cherished memories weren’t gone. He was still that beautiful blond toddler I’d dreamed about and held in my arms.

Thirteen years ago, he took away so  much pain, and brought so much joy. He completed our family, completely. I’m so grateful God saw fit to make me this precious boy’s mom.

I told myself not to get comfortable

If you have any experience with an autistic child, you know it comes with its ups and downs, backwards and forwards, twists and turns. I wrote a couple of weeks ago that we were in, and had been in for awhile, a good place. Well, yeah, I told myself not to get comfortable, and for good reason.

I’ve had two emails from his special ed teacher within the last week. I might be saying some bad words to autism right now. He’s pushing back on work. He doesn’t want to try when it’s hard, or if he thinks he can’t do  it. He’s giving up. Yesterday, he left the classroom for twenty  minutes (we’d had him down to less than five minutes, and usually staying inside the classroom, for months), couldn’t tell the teacher what was wrong nor what he needed. Gah!

Essentially, he’s not using any of the tools he’s been given, and he’s backsliding. It happens, but it’s frustrating and gut-wrenching every single time. I told his spec ed teacher I’m grasping at straws trying to figure out what may be going on. Who knows what’s triggered him this time. It could be he’s had too long without a break from routine (but then we know breaks from routine also set him off). It could be something as simple as his brother getting his driver’s license, thus setting off a change in his “normal”. It could be the cold he’s fighting. It could be the trip we have coming up. Or it could just be a normal autism blip.

I needed him to stay in a groove. I’m dealing with a ton with the other two, and his status quo was helping me stay sane. But such is the way of parenting life. Just when you think you have a handle on one thing, something else comes up. Every week seems to bring something new. difficult, agonizing.

We do have a trip in a few weeks, over Spring Break, and I can’t wait. We need a family huddle break – an insulated, away-from-it-all escape. It will be just the five of us. I’m bummed our friends can’t come with us, but at the same time, I’m looking forward to it just being us, creating new memories, enjoying new experiences, seeing new things, and reconnecting.

We’ll get Little Man back into his happy place. This too shall pass. The sunshine will return, and the rainy day will be a memory again – one more blip, one more hurdle overcome.

It’s his, but he doesn’t remember

I met with a  new local March of Dimes staff-person last week. As is typical, I shared why we volunteer, told our story – how we’re connected to the mission of the organization. She asked if Big Man does his own fundraising, tells his own story. Um, no. He walks, but when it comes to the talking, he leaves that to me. Why? Well…..it is his story,, but he doesn’t remember it, thank the good Lord. He knows my version of his story. He’s heard it a billion times. He did live it, but he has no memory of it. The baby in all the photos is him, but like any other baby, he has no memory of his early years, much less his too-early, dramatic entry into the world.

He does get why  his story matters. He does  understand prematurity was, is, and always will be part of who  he is, but all the emotions attached to his premature birth belong to others, not to him. Does that make sense? He lived it, but we lived the fear, guilt, pain of having failed him in any way. He was the feisty fighter who made it while we stood by, watching and praying. He did it, but we are the ones who remember.

He compared it to when people say I’m strong for having gone through all we’ve gone through.  My response always is, “You never know how strong you are until you have to BE strong.” He just lived – he doesn’t see anything amazing in that coming from him, but instead places the credit upon us, his nurses, his doctors. I say he had a strong will to survive right from the very beginning.

I keep encouraging him to own his story. I think he’s there now. He  had to write his own obituary in his psych class recently.  He did include his premature birth in his narrative. I was a little surprised by the inclusion. If you don’t know his story, you’d never guess his story. You can’t look at him and say, “Oh, yes, he was a preemie.” You can’t tell by looking at him, in other words. Well, I have to edit that a little bit – many preemie moms I know can tell by looking at a kid, but we know what to look for as we see it in our own preemies. The general population can’t look at him and know, without being told, he was born 3.5 months too soon.

I’m thankful he doesn’t remember at all, this story of his. I’ve always said I remember enough for both of us. But I’m glad he’s owning it, making it his, because it is his, even if he doesn’t remember one second of it.

The place we’re in

I came across an autism parenting meme on Pinterest the other day, and I had to save it, because it perfectly describes exactly where we are right now with Little Man. The meme said, “If things are going right, don’t touch anything, don’t change anything, in fact maybe don’t even breath. Celebrate it for as long as it lasts.” Amen, and pass the weighted blanket. This is where we are. This is where we’ve been for a few months now. I’m afraid to even type that out loud, for fear it will all come crashing down, and we’ll head back into the storm once again.

Most of his life, I’ve felt I didn’t have even the slightest handle on Little Man. Every time I’d get hold of one straw, everything would change again. He’d have new triggers, new sensitivities, new food aversions, new behaviors. When that baseball memory came up in my Timehop the other day, I read all the “rules” we’d given him before sending him out onto the field…..Don’t make dirt angels behind second base, don’t fill your hat with dirt and put it on your head, don’t throw your gatorade bottle at any of your teammates in the dugout, don’t pick the grass, don’t look for bugs. So. Many. Don’ts. I was a nervous wreck every game, every practice. We never knew quite how it was going to go. That was much of life with him.

The summer before he was diagnosed autistic, I spent every minute of every day micromanaging his life, trying to keep him from melting down or having a tantrum. I was exhausted. I believe he was too. I spent a few years on high alert 100% of the time. Third grade was relatively calm, but in fourth grade, we went right back to that hell. Fifth grade was good. Sixth grade was a nightmare. Sensing a theme here? This time last year, I started counting down the days left until summer. I was beat down. The beginning of this year was much better, and since Christmas, he’s been amazing.  I’m not on high alert all the time.

Sure, we have our routines and tools in place. But it mostly runs like a smooth machine. We just know what to do and how to do it. Am I feeling safe and secure here? Um, no. I’m like that meme….don’t change a dang thing, don’t touch anything, don’t even breath for fear of upsetting this precarious balance. That’s life with autism.

A friend told me long ago – and I’ve written of it too – that life with autism is like living in Seattle. It rains….a lot….but then you get those sunny days, and you just revel in them. The rain will come again, and it’ll be dark, but the sun will come again, for however long. The older he gets, the more tools we’ve given him, the more he learns and develops, the more sunny days we have.

The place we’re in now, it’s still that Seattle, but the sun in shining brightly. If I’m honest, though, I’m not really breathing, definitely trying to keep everything exactly status quo, and I’m seriously not touching any part  of his routine. I am enjoying every second of the sunshine. IMG_0560