You First

My mom recently moved out of the home she’s been in since I was just out of high school. In the process of the move, she gave me a bunch of my old things, including a box that held some of my older journals from high school. Might I just say, “wow”. Wow, did I worry a whole heck of a lot what other people thought of me, but then isn’t that the way of teenagers, particularly teenage girls? I can’t believe how much I allowed my vision of my self-worth to be wrapped up in who liked, or didn’t like me.

Learning to be okay with and like yourself is one of life’s hardest and greatest achievements. I didn’t quite figure out I wouldn’t be too attractive to others until I was attractive to myself until later. I think I was in my mid-twenties, ditching yet another failed relationship, stuck in a hotel room by myself on a business trip before I sat down and faced it all. I needed to like and accept myself first before I could expect anyone else to really like and accept me. I had to be fine alone before I could truly be in anyone else’s life, much less truly let anyone else fully inside my life.  Make sense? That was an intense week of self-reflection and self-revelation. It was painful at times – I had to clearly see and accept all my faults. I also had to clearly see and accept all my strengths, something I actually found much more difficult.

Back in high school, and even early college, I felt my value came through having someone want me, just me. I’m not talking about friends – I was lucky enough to have some really incredible friends who loved and accepted me more than I did myself. I’m still grateful to them for keeping me afloat. But as I read the words I’d written from freshman year through my high school graduation, I realized my days were preoccupied with whomever I had a crush on at the time. If he didn’t talk to me on a particular day, I must’ve looked bad or sounded stupid. If he didn’t acknowledge me, it was because I was an ugly, annoying little girl. If he didn’t smile at me, it was because I was wearing the wrong clothes. If I didn’t get asked to the prom, or homecoming, or the winter dance, I was worthless and a failure. I didn’t have a boyfriend until mid-way through my senior year of high school. Looking back, I can see that was mostly because of the way I viewed myself. Once I gained a little bit of confidence, things started to change. But if I’d spent less time obsessing about who liked me, or didn’t like me, whether I had a boyfriend or not, which group I was part of or not part of, and spent more time learning to like me for me, maybe I would have found a peace with myself much earlier in life.

Watching my older two navigate high school, I’m reminded why you couldn’t pay me enough to relive those four years (well, most of them anyways – it wasn’t all entirely awful). If I could go back and tell my sixteen-year-old self anything it would be to love, care for, and accept myself first. I’d tell myself not to send my “representative self” to school each day, but to just be me, and be good enough with who I really was to put that person out there every day. If I wasn’t good enough as myself, my representative certainly wouldn’t be good enough either as she was a shell, a front, a wall between me and the world around me.

I guess my point is this – love you, first. Once you learn to love you, others will find it easier to love you too.

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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Our Little Corner on Autism Street

I finally brought myself to watch the 60 Minutes segment on the new Sesame Street character, Julia.  Julia is an autistic girl. As seems to be par lately, I sat there watching, with tears rolling silently down my face. This is our world. I couldn’t help but wish Julia had been around ten years ago or more. It may have made his life a little easier if kids had had the chance to learn about autism before he spread his own version of awareness in his classrooms. I hope Julia helps kids, and even  adults, understand autism – that it isn’t something to be afraid of, to turn away from, or to bully.

Here’s the thing – his autism is real. It isn’t ever going away. It is a lifelong diagnosis. There’s no curing it. You don’t take antibiotics for ten days and recover from autism. It is him, it’s part of him.

What does our little corner on autism street look like? Well, take this morning for instance (which mornings aren’t his favorite anyways). Big Man accidentally made too much noise while getting ready for school in their shared bathroom, which woke Little Man up twenty minutes before his usual wakeup time. Anyone can be cranky in the morning, but for us it meant Little Man yelling at pretty much everyone, slamming doors, stomping around upstairs, and just generally letting everyone know he was not happy. In a word, he threw a tantrum. This is not the tantrum you think of with a spoiled or over-tired three year old. It’s something he can’t control. His emotions overwhelm him, and this is his reaction as he can’t process it out, or put words to his feelings. This happens any time something unexpected happens, there’s a change in his routine, we run out of his favorite food, or the battery runs out on his iPad when we’re at a game/event/dinner out. He’s improved ten thousand percent in the last few years. His tantrums are fewer and further between, but they are still part of life.

Meltdowns are also part of life, although, again, there are fewer, and his recovery is much quicker than when he was first diagnosed. Meltdowns usually happen when he gets hurt, or there’s a sudden and unexpected loud noise. Lord help us if a siren goes off he’s not expecting. It’s even in his IEP he have advanced notice, if at all possible, of fire/lockdown drills at school because he will lose it if that alarm goes off and he isn’t expecting it. When we take him to movies, he will use the excuse of needing to go to the bathroom when the sounds get to be too much, or there’s too much action. He’s been known to leave the theater five times during a 2 hour movie, although lately we’ve been able to get that down to two or three trips out. The odd thing about this is, if he chooses to listen to something, he has it turned up SO loud!

He still travels with his favorite stuffed animals. He will be thirteen in a few days. Yeah, that. You should see him watch them go through the security scanner in airports – his face anxiously watching from the other end to make sure they come out safely and don’t get stuck in the machine. We tend to pre-board airplanes because standing in line, and having to get into his seat quickly when there’s a line of people behind us, makes him very anxious and overwhelmed. And  you can bet I  make sure to have all his favorite snacks packed in his airplane bag.

Speaking of food – when  your kid is autistic, you can almost bet his food choices are going to be minimal, and you’d better make sure you don’t run out of more than one of those minimal choices at any given time. I have been known to, in a panic, rush to the grocery store before going to after-school pickup just so I have what I know he will eat. Our restaurant choices tend to be based around whether they have pasta, chicken strips, or burgers on the menu.

He has a weighted blanket, and a weighted hoodie my mom made for him. What a godsend! That blanket has really helped not only his sleep, but when he’s really in full meltdown mode, he gets under it and calms pretty quickly. I can’t even hold the blanket – it makes me claustrophobic, but it’s a comfort for him to be under it.

He does have his obsessions – currently YouTube videos of gamers playing his favorite games, Plants vs Zombies, paper crafting his favorite characters from his favorite video games, coding, and video game music.

He seems much younger than his siblings did at this same age. He seems much younger than many of his peers.While chronologically thirteen, he is emotionally and socially about the level of a 7 or 8 year old. He’s intellectually the equivalent of a high school senior, if not more. It’s an interesting, frustrating combination, particularly when he can’t articulate his thoughts and feelings.

He has very little tolerance of anyone talking down to how old they think he is. Quickest way to get him to be as rude as possible is to be condescending to him. He will light you up, or he will refuse to speak to you but will let you know with his glare exactly what he thinks.

We don’t go anywhere without some kind of screen and headphones for him. It’s that simple. Yes, we frequently get those judgemental looks in restaurants, etc when he pulls out his iPad or phone, puts his headphones on, and completely disengages. Trust me – you don’t want to deal with the alternative.

He does flap his arms a bit, get over-excited, sit in odd and contorted positions.  He has his tics, for sure. We’re used to them, and I don’t think about them much, unless we’re out or around someone new and I notice the glances and staring.

He does perseverate. He doesn’t like to try new things. He doesn’t want to do anything he thinks he can’t do successfully. He pushes back on things he thinks he can’t do. His anxiety causes sleep issues, especially when he’s out of routine.

So that’s our little corner on autism street. That’s not his entire story though. He’s utterly brilliant, witty, loves puns, incredibly creative. He’s amazing, he’s mine, he’s autistic.

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.