Your Guess

It’s been pretty quiet on the autism front in the Herd household this year, thank the good Lord. I said it earlier this year, but it’s worth saying again….we desperately needed a quiet, drama-free year for our Little Man. Last year was dreadful, draining, overwhelming, awful. But you know in the wonderful world of autism, there are lots and lots of roadblocks, speed bumps, dips, turns, and storms. They’re not unexpected, but still disappointing when they happen.

Little Man has almost five weeks left of school. Good golly – that just sucks, especially as the bigs are out in two weeks. He knows the end is near. They’re in the middle of the standardized testing. He wants it over with quickly. Routine has been busted a bit at school because of the testing, but he’s also aware the end of the year is coming,  which means an even bigger routine bust. He does not do well with changes in, nor lack of, routine. I see his anxiety levels rising. I see some old behaviors returning. I see less tolerance and patience from him.

I’ve had a couple emails from his SAI at school letting me know he’s pushing back on work, he’s spending more time out of the classroom again, he’s pacing, his breathing is elevated. She wanted to know if I had any clue why this  might be happening. Uh, nope. Your guess is as good as mine. I could point to any number of things, but there doesn’t seem to be one thing we can say, “Yes, that’s what’s making him behave this way right now.”

We keep reminding him of his tools. We keep reminding him what he’s capable of. We keep reminding him the many successes he’s had this year. None of that changes whatever’s going on in his head, nor how he deals with life. So we do what we can at home. They do what they can at school. We pray this is just a blip and not a sign of long-term struggles.

I know better than to borrow trouble, but next year is his last year of middle school. There’s a new building with classrooms for the 8th graders. They will do things a bit differently for 8th grade than he has in sixth and seventh. He will have to participate in his IEP meetings. And the transition to high school will start. He knows it’s coming. I can’t help but think that may be hanging over him a bit, even though it’s in the distance. I know it’s hanging over me.

So we hang on for the ride the remainder of this school year, hoping this is just a temporary dip. But as for what the root cause is of this particular dip, your guess is as good as mine. And thus goes life on autism street.

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.

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.

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

Christmas Firsts

You’d think once your kids were past that late-toddler stage, you wouldn’t have anymore “firsts” at Christmastime. That’d be a mistaken assumption. We’ve entered a whole new world of firsts with my kids, and nearly all three teenagers.

This was the first year they all knew about Santa. (insert sad mom face here)  It was a little heartbreaking, but definitely time. It also made things quite a bit easier. When your brain is already on overload with lists of work to-do’s, shopping to be completed, food to be bought, cookies to be made, schedules to be adhered to right up until Christmas, it’s REALLY hard to keep up the facade of Santa without screwing up. I can’t tell you how many extra stories we had to come up with because one kid or another caught me off-guard, and I screwed up. And forget about trying to keep them from wondering why all those boxes from Amazon were arriving on a daily basis when Santa was the one bringing their gifts. Now, the boxes arrive, I  hide them, end of story. Nobody asks any questions. How Little Man found out about Santa is another story for another day…..

The Princess exchanged gifts with a boy for the first time. That was totally new, and somewhat exasperating, for both of us. It was also kind of comical. But I mentally checked it off in that mom-book in my heart. It wasn’t a huge deal. They aren’t BF/GF, although, according to teen-speak, they’ve moved past being “a thing”, thus necessitating the Christmas gift exchange. The “unofficial” also went to the movies with us Christmas Eve morning. Meeting the boy – another first.

Spouse and I fell asleep before the kids for the first time ever. Seriously. We were desperately trying to stay awake, watching White Christmas. We were both out before 9pm. We woke up on the couch around 10:15, hauled in the gifts from their various hiding places, filled stockings, and then headed upstairs. Little Man was still wide awake, bouncing around his room.

One first we didn’t get to have was Little Man NOT having a meltdown. Seems even when he knows who Santa is, and that no one will be sneaking down the chimney to deliver gifts while he sleeps, the anticipation still causes anxiety. Sigh….

For the first year since Big Man was born, I didn’t cry singing Silent Night. That song has been my emotional stumbling block for so long. I didn’t feel I had to defeat it so much as I had to be able to remember people and events that song recalls without it pushing me to tears. I did still remember the night before we brought Big Man home from the NICU, and I did still remember my sister and her particular love of Christmas, but both memories made me smile rather than cry.

I’m sure we will have many more Christmas firsts in the years to come. This is just another beginning to a new stage for our family. I hope yours was Merry.

 

“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.

Those consistent good days

I realized the other day I’ve reached a point in this school year I’m able to take good days with Little Man for granted. I no longer hold my phone anxiously in my hand the entire 6.5 hours he’s at school. I don’t cringe when my phone rings. Emails from his special ed teacher don’t give me anxiety. He’s in a good place. He has good friends. He’s in class more than he’s out of it. He even participated in a full session of PE, willingly. Can I get an amen?

I love this place. It’s freeing. I’m trying to enjoy the heck of it, because, well, we know how this dance goes, right?

We have 5 weeks and two days left in the school year, minus Memorial Day and the Friday after their last day. That’s 25 school days…TWENTY-FIVE!!!! Five plus weeks of racing to the finish line, complete with Open House, sports banquets, awards ceremonies, and project presentations. It will be busy.

A new routine is looming, followed by a year with a new teacher, in a new classroom. Out-of-the-norm activities, extra-business, coming routine change….those add up to anxiety for Little Man, which leads to wheels breaking down, if not falling off. I’m trying to not think about that possibility.  I’m trying to just relax in this good place we’re in. It’s hard to do when we’ve been down this particular road so  many times before, and the same thing has happened  every single year. It’s a delicate balance of living in the moment, and preparing for what’s to come.

That’s where we are. Some part of me can’t help hoping maybe this time, the end of the school year will be different, less fraught. Hang on for the ride, my friends. This is life in our autism-land.