What made us ask?

The Princess asked awhile back what made us start having Little Man evaluated for autism. It’s all so ingrained in my mind….the horrific summer we had between his first and second grade years….the micro-managing, the meltdowns, the worry that maybe I just wasn’t being a good parent to him/not hard enough. I remember being SO offended when my sister, who is a para, suggested we have him evaluated.

That summer was so miserable. I was exhausted trying to keep him from falling apart and/or lashing out every  minute of every day. We knew to do countdowns before we left for anywhere or changed activities. We knew he didn’t like unexpected loud noises. We knew certain things kept him comforted. But I lived from minute-to-minute, never knowing what disaster would come next. By the time school started, we knew we were dealing with ADHD at the very least. I was in denial about anything else. At his parent/teacher conference six weeks into the school year, I asked his teacher what she thought. She legally couldn’t really say anything, but when I said we were considering having him evaluated, she just nodded her head and said she thought that was a good plan of action. We’d known her for a few years already – I was comfortable enough with her to be honest about my fears and concerns. She’d had enough time to get to know him in the classroom setting. We all knew something wasn’t quite the same as other kids for my Little.

When my sister made the suggestion, I immediately texted my BFF – who happens to have a daughter on the spectrum. She’d spent some time with Little Man over the years of our friendship, and knew the summer we’d experienced. She said to me, “You know, she might be right.” I had an A-Ha moment of epic proportions. Appointment with the pediatrician scheduled the next day, which earned us ADHD eval paperwork and a referral to a child psych specializing in ASD. Within a month,  we knew he was ADHD, hyper type, and autistic.

I cried the day we got his official diagnosis. In so many ways, it felt like a life-sentence. I didn’t know what to do, how we would manage, what life would look like now. Then another friend with a son on the spectrum reminded me that Little Man was still Little Man. A diagnosis hadn’t changed him from one day to the next. That diagnosis would just get him the help he needed, and it helped describe him, but it did not define him, nor us as a family. It is part of who he is, who we are, but it is not all.

There have been some pretty dark days since Diagnosis Day six years ago. Some of those days have left us scarred. And autism does not go away, ever. What started us down that road? Well, it was just a realization that he wasn’t just an immature youngest child who was behaviorally challenging to us…..a realization there was something more, something deeper, and that we all needed help.  It was the complete understanding there was something different about him, that we weren’t just horrible parents and he wasn’t just a horrible, misbehaving child. That “more” was the impetus. And so, here we are, six years later…..he’s still autistic, but he’s still my Little Man. Nothing about that has changed.

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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Weight For It

When you have a micro-preemie, how much he weighs is an obsession from day one. Every ounce, or part of a ounce gained, is a huge win, a step in the right direction on a very long journey. We waited, so very anxiously, to see his weight on his chart each morning he was in the NICU. It seemed to take forever for him to get back up to his birth weight of a whole two pounds. We had a mini-party when he reached three pounds. When he came home at 6 lbs 7 ozs, he seemed huge compared to the day  he was born, that is until I took him to the pediatrician for a weight check and initial visit a few days after he came home from the NICU. Surrounded by “normal” full-term babies, he diminished.

Weight checks have just been part of his life, his entire life. He received synagis shots October through April the first two years of his life to fight him getting RSV. That meant we were in the pediatrician’s office much more than other infants and toddlers. And he was weighed every single time. I always had anxiety on doctor-visit days, and would hold my breath until his weight came up on the scale. His growth chart didn’t look like any other I’d seen. He had his own way of doing this, his own growth curve.

When he was diagnosed with ADHD, and we began medicating him, regular weight-checks were re-introduced. Blessedly, the medication didn’t seem to affect his appetite. But then he fell off his own growth curve a few years back. Bloodwork, visits with specialists, bone-age scans, and even more frequent weight-checks ensued. We pushed calories, good calories, as best we could. I could still wrap my hand around his upper arm. I found myself back in that place, the one I’d been in while in the NICU…breath-holding every time he had to get on the scale or be measured. Failure to thrive, malnourishment (oh yeah, that one really pissed me off at the same time it nearly broke me), constitutional delay….all those words were thrown at him. Few asked what dad had weighed at the same age. And every time, I felt like a failure. I hated to see the look on his face when there were no gains, or the gain was too little, when he hadn’t grown since the last visit three months previous.

He has a weight-check appointment today.  I know he’s grown, thank God. But has he gained any weight? We’ll find out in a few hours. I’ll be holding my breath, and my heart will get that little hitch. Even knowing how much and what he eats every day, I wonder if it’s enough to make a difference, to make it so I don’t have to hear those words from the doctor, see that same number on the scale.

Send some heavy thoughts this way. And weight for it.

GAH! with the medical labels already!!

Big Man had a doctor’s appointment today with a different pediatrician in our group.  His regular pedi wanted to get a second opinion on his ADHD medication regimen. He’s been on basically the same routine of meds since he was originally diagnosed at age 8. With teen years, and the immense difference between elementary/middle and high school, she wanted a second take on what we’ve been doing. We’ve seen this other doctor before – not for our standard physicals, ADHD, or asthma follow-ups, but when one of the kids is sick or injured, or when our regular pedi is out of the office.

Big Man and I were both excited to see the scale and height had moved up a bit even in the short amount of time since his last visit. The joy we felt at the (albeit small) gains was quickly shot down. Words I hate were said…..Failure to Thrive, and then a new one for us…Grossly Malnourished. The. Hell. I came *this* close to tears right in that very moment, with the doctor looking at me, and continuing to ask questions.

Big Man is not big. He never has been. He entered this world weighing two whole pounds, which was actually considered “big” for a 26-weeker. He didn’t hit the “normal kid” charts until he was three years old, and even then, he was on it by the smallest of margins. He’s always had his own rate of growth, but he always grew. Then a couple years ago, he fell off his own growth scale. That’s when all the fun started. But I have spent basically his entire life watching everything that goes into him – pumping up calories every way we can. We walk out of nearly every doctor’s visit with that pamphlet on ways to help your kid gain weight. He eats!!! Trust me, he eats. He eats better than my other two combined. Yes, he eats crappy snacks, which I don’t really worry about because they’re still calories and he can take it, but he also eats really healthy stuff every day, all day….eggs and oatmeal for breakfast, peanut butter and jelly for lunch, good helpings of chicken, pasta, tacos, steak, etc for dinner, fruit for snacks, and he’s a great milk drinker.

He’s had labels his entire life as well…micro preemie, very-low-birth-weight, developmentally delayed, high muscle tone, speech delayed, developmentally caught up, reactive airway, asthmatic, visual processing disorder, ADHD, failure to thrive, constitutionally delayed…..I’m used to the freakin labels. But Oh My, am I over certain ones. The “grossly malnourished” slayed me today. Let’s layer the guilt on mom, please? Just a little bit more? That stupid label makes it sound like I intentionally set out to not let my kid eat, grow, gain weight. It was a sucker punch I didn’t see coming, and it was tossed out there without a thought. My son looked at me as soon as it was said, and I think he knew what I was thinking, how much those words hurt.

I have spent sixteen years doing everything I possibly could to make sure that kid grew, gained weight, was healthy, well-fed, taken care of. I have fought hard for every single ounce since the minute I started bleeding. I still hold my breath every time he gets on the scale at the pediatrician’s office. I still cringe when I see him next to his peers – so thin, and still waiting to grow. My heart broke today. Enough with the medical labels, please? I get they’re necessary in some arenas, but us mommas don’t really need to hear or see them.

Olympic Back Stories

I think one of my favorite parts of the Olympics is hearing/watching all the backstories they do on individual athletes. I love finding out what challenges they’ve overcome, how they started, how they came to this point – an elite athlete competing on a world stage. Every time I see one of the back-story segments, I can’t help but think what my kids’ back stories would look like….

My kids and their cousins face multiple challenges amongst the group. A few have already overcome so much….prematurity, hearing loss, autism, anxiety…..I watch them excel in school, in running, in golf, in acting, in being amazing, funny, brilliant human beings, and I’m moved. I write their Olympic back-stories in my mind all the time, and it can (okay, frequently does) make me cry.

Big Man was born over 3 months prematurely, spent over 90 days in the NICU, was diagnosed with asthma at 5  years old, and ADHD at 8 years old.  He could have, and probably should have, faced hearing or vision loss, heart surgery, developmental delays/disability, Cerebral Palsy, or a host of any other issues. Instead, he can hold his breath underwater for over a minute (so much for preemie lungs!), ran a half marathon at 15 years old in under two hours, and golfed on the Varsity golf team as a high school Freshman. Can you just hear that Olympic story?

Little Man was diagnosed ADHD and Autistic when he was 8 years old…pretty late, comparatively.  He continues to be mainstreamed in school, and his brilliant mind often scares me. He’s smarter than the rest in this household combined. He can code like a fiend. He has his own YouTube channel on which he regularly posts gaming videos. He seems to finally be coming into his own, more secure in his abilities, in his friendships. There may  not be an Olympic sport for coding, but if there were, he would win, so I write his story in my mind too.

One of my niece’s is hearing-impaired. She was late-diagnosed as well, but she hasn’t let that hold her back. She accommodated for herself before anyone knew to accommodate for her. She’s a wicked-fast runner, competing at a high level in cross country and track at her high school. College recruiters started contacting her a year ago. Yeah, I write her story every time she wins or places well in a race.

Another niece faces anxiety and depression. She’s also a beautiful, talented dancer, in  her second  year on her college dance team. On top of that, she writes, oh my does she write. I’ve had the great joy of reading multiple articles she’s written this summer. I’d like to think she gets that from me. Hah! When she’s a national news reporter, sportscaster, or journalist, someone will write a segment on her life. Back story…..I’m already writing it.

Then there’s my nephew B. He’s an actor. He also is a runner. He’s bloody brilliant as well, but six years ago he was an entirely different kid.  He writes too. His FB posts are witty, sarcastic, thought-provoking. He heart is huge, particularly for the underdog. Some day, when he is up for an Oscar, they’ll do a back story on him. They can thank me, because I’ve already written it in my mind for them.

Now, I didn’t call these five out to say the rest in our family aren’t amazing as well. My brother, sister, and I each helped produce great kids. They are all extremely talented in their own ways. And I have an Olympic backstory for each of them.

“That Kid” at camp

Little Man is taking Intro to Java Coding through Minecraft tech camp this week. Awesome, right? He’s been (im)patiently waiting all summer for this week to arrive. There was no trouble Monday morning getting him up and out the door, except for a battle over his meds, which I gave in on.  He has been doing great this summer, unmedicated. But then again, he hasn’t really had to do anything he didn’t want to do. As I mentioned recently, he spends much of his days in front of his beloved screens, making videos, watching gamer videos, creating and playing in Minecraft, and playing video games. So why did I give in on the meds, knowing he was going to be spending a long day at camp, in a structured format? My thinking was this – he would be doing something that completely holds his interest, and would be in front of a screen most of the day.

He had some issues day one, when he got hungry. No problem – we sent him with snacks the next day. Things seemed to be going well – he happily got  out of the car each morning, and excitedly returned to the car every evening, excited to share what he’d learned, stories of his new friends, and what they’d created that day. And then yesterday….the moment I’d been fearful of, had been anxious of occurring…..it happened, the call from the camp director. He’d gone sideways – was being defiant and rude, wouldn’t cooperate and engage with what the class was doing. He wanted to do what he wanted to do on the computer, and was loudly voicing his opinion. I’m not going to lie – I said some bad words when I heard her voicemail. I called her back, and gave her some suggestions for dealing with him. I asked them to be firm with him, to set time parameters for him which seems to make it easier for him. Then I sent him a text, letting him know if he continued, if I received another phone call or had to come pick him up, he would be done with technology for the remainder of his summer. I also told him he would be taking his meds today and tomorrow.

I was nervous to pick him up yesterday. The director is the one who comes to the car to check kids in and out, and I asked her how the afternoon had gone. She said she hadn’t heard anything further from the instructor, so assumed he had been okay, and there hadn’t been any further incidents. Little Man reported the same when he got to the car. Whew.

Here’s the thing – he’s that kid all the teachers and directors know his name by day two. They know who he is. I hope they’re seeing his amazing side, not just his difficult, challenging, sometimes annoying side (I’m allowed to say he’s annoying – even knowing he’s not intentionally being a jerk). I know he’s “that kid.” That hurts. Here we are, four years past diagnosis, and I still go round and round on this…I would take it away, in an instant, because autism makes his daily life in this world so much harder. But I don’t want to take it away if it means he loses those incredible parts of him as well as the sucky parts. It’s just hard when your kid is that kid.

Summer, Unmedicated

I’ve been asked frequently lately how summer is going for Little Man. My fast response is, “Great!” but then I usually end up qualifying. I decided, about a week into summer, I wasn’t going to fight it. He had a miserable year much of last school year. We’re both exhausted. So he’s pretty much been allowed to do what he wants to do each day, which involves a lot of screen time.  He isn’t just playing video games, nor watching YouTube videos of other gamers playing video games. He’s been making his own videos, and creating a lot on Minecraft and Lego Create.  And he’s not by himself – our house has been boy-central most of the summer, with two particular friends hanging out nearly every day. So he’s engaged, and he’s happy. I do force him out of his comfort zone on a fairly regular basis, but I haven’t rocked the boat much. We’ve spent five days in Palm Springs, gone to the movies to see Dory (more on that later), taken a few beach trips.

He asked to go off his ADHD meds for the summer. I didn’t think too long about that one. His ADHD is completely different from that of his brother, so it’s not a huge deal to leave him unmedicated when he isn’t expected to focus on classroom schedules, rules, and activities. He’s at a critical growth point, too. Taking him off the meds leaves his appetite at that of a normal 12-year-old. He is more outgoing, engages in more conversations, unmedicated. We’ve had multiple comments on it. That kind of hurts. Here’s why – when he has to focus for hours on end on something other than his screens, he is incapable without his medicine. Also, what most people don’t see is his struggle to maintain his emotions without his medicine. Yes,  he’s more outgoing, talking more, but there are also more tearful sessions, more angry outbursts. He goes swings from one end to the other on the emotion scale within seconds. I see it, because I’m with him 24/7.

So his summer has been pretty great, 90% of the time. He’s had lots of sleepovers (all here, though as he still doesn’t like to spend the night at someone else’s house). He’s had a ton of friend time. He’s in his element – and I have computer parts and screens and cables ALL OVER my family room. But  he’s happy, content. I’ll take that. In a few weeks, we will have to start re-focusing and preparing for the new school year. Until then, he eats, he plays, he talks, and he’s unmedicated.