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.

Transitions

Little Man has one more year in middle school, but we are already thinking ahead to high school. The biggest decision will be where he goes.  I’ve been trying to live in the land of denial with this one. I’d rather not consider a) three kids in high school; b) his actual transition to high school (because we know how well the transition to middle school went); c) my baby in high school; d) getting to know a whole new IEP team; and e) his last tri-ennual evaluation, set for his Freshman year. All. Of. That.

He will, of course, have a voice in the decision-making process. What brought it all to mind today is that he brought it up in the car this morning. He and his buddies were talking about high school, where they each wanted to go, and – of all things – the possibility of getting community service hours by volunteering at their old elementary school when they’re in high school. Nothing like planning ahead! Anyways, he firmly stated he wants to go to the same school as his siblings. Okay, well, wow.

There is a math and science high school in town, which is much like the middle school he attends. It’s project-based, heavily utilizes technology, collaborative work, and it’s much smaller than the nearby high school. It’s a lottery process to get into the math and science high school, so it would be luck of the draw to get him in. It’s also across town – at least 20 minutes each way with traffic. So while I think it would be a really good environment for him, I’m unsure he will get in, and unsure of the logistics.

I like the idea of him at school with his brother and sister. I haven’t had all three in the same place in nearly five years. And if he does go there, that will give us that many more years of blessing those hallowed halls with our particular brand of crazy. I’m sure the Principal, VP’s, counselor, and school nurse are already cringing at the thought of three extra years with us around.

Knowing he would have his brother and sister on campus to look out for him and help him gives me small peace. I know how frequently Big Man and P see each other at school (hardly ever) during the day. It’s a big school with 2500 students, give or take. I do panic though…..the more students, the more opportunity for some jerk to give him a hard time. And don’t get me started on the PE situation with locker rooms, etc. I can’t even…..

He’s in a good place now. High school will be a new story. He’s hardly had to change classrooms, is used to not having homework, and has plenty of kids similar to him at his school. The kids know him, accept him, know his quirks and how he is. I can’t entirely picture how that’s going to go in high school. We do have other options besides these two. There is a charter high school, Classical, and other semi-homeschool options (although the thought of him being home more during the school day, well, that’s a whole other discussion). He seems bent on going to school where his brother and sister go.

It’s going to be a transition no matter where he goes. Those transitions are never easy with him. Yes, we have another year where we are, but the process has begun.

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

He doesn’t do anything

I pulled up  my Timehop the other day, and there were photos and video of Little Man on Opening Day of his rookie year of baseball. That was prior to him being diagnosed on the spectrum. He played soccer and baseball back then. All three kids were in multiple activities. He was challenging to say the least, but he did whatever we put him in, although often begrudgingly.

He gave up baseball first, saying it was boring and he was actually afraid of getting hit by the ball. He would have reached the level of kids pitching that next year, and the thought of it freaked him out. We pulled him out of soccer when it became evident he could actually get hurt as the skill of the kids he was playing continued to improve while his stagnated. He wasn’t exactly one of the bigger boys out there either, nor quite the fastest, which would have helped. We talked about other activities for a couple of years, but nothing seemed to interest him at all, and, quite honestly, I was hauling the other two all over town and beyond for their stuff. Having one kid not involved in anything was something of a relief.

So, he doesn’t do anything….no football, no baseball, no soccer, no music…nothing. He comes home from school, and goes to his computer. He isn’t alone – he has friends over all the time. And he does get outside frequently. But he has no extra-curricular activities. Sometimes I feel guilty about that, but most of the time, I’m totally okay with it.

It isn’t worth putting him in something he doesn’t want to do. That wouldn’t be fair to his teammates or coaches, because he would push back. So yes, we did kind of take the easy way out on this part of his childhood. Will he regret it, or hold it against us someday? I highly doubt it – he’s perfectly content with his lack of extra-curriculars.

We have sent him to camp during the summer. This past summer, he went to coding camp and he loved it. We’ll be sending him back to that program again this summer. He’s lately indicated an interest in learning to play the guitar. We’re working on that.  Big Man will have his driver’s license soon, and that will free up time for me to manage lessons and such for Little Man.

Spouse has started to take him running on Saturday or  Sunday mornings. He doesn’t seem to mind the running and it’s his preferred choice, given the option, during PE at school. We will put him on the cross country team when he starts high school in a year and a half.

For now, he’s not involved in any extra activities, and that’s okay. Do I miss seeing him in his uniform, out on the field? Sometimes, yes. But I certainly don’t miss the drama of making him get out there.

Suddenly

We have spent years dealing with a child crawling into our bed at all hours of the night, nearly every night. I’ve become so used to having a foot in my face, getting punched or kicked randomly, hearing the grinding of teeth, or him yelling out that sleep disruption is just a natural state. He learned last year to not ask if he could climb in, but rather to sneak in from the foot of the bed. Sneaky little man.

I’ve had awful insomnia the last few nights, awake from 3:30am – 5am, and I mean wide awake, brain spiraling. One of the things that hit me as I struggled to find sleep again was that Little Man wasn’t in our bed. Not only was he not in our bed, he  hasn’t been in our bed for awhile now. Suddenly, he is staying in his own room, all night. Suddenly, he is sleeping through the entire night. Suddenly, he isn’t waking us at 3am, yelling, hitting or kicking his wall, crying, or crawling over us to sleep between us. And it happened just like that.

He will be thirteen next month. I forget that sometimes, as emotionally and socially  he seems SO much younger. But his body is that of a near-thirteen-year-old, so hormones are changing. He sleeps longer. He sleeps more deeply. Oh my gosh – he’s doing something “normal”.

We knew the day would come we didn’t have a child crawling into our bed, or attempting to crawl into our bed. That’s probably why I didn’t really fight it much for too long. He’s our youngest, and I think I wanted to hang onto those precious moments, in spite of the fact it was a serious disruption of my sleep. They grow up too quickly, that time is so very fleeting. At the same time, I’m relieved he’s sleeping – getting what his body desperately needs. I’m relieved he’s sleeping the night through, in his own bed. Suddenly, he sleeps.

What’s it like for them?

I saw a book on an autism page I follow, written by the sibling of an autistic child, about what it was like to be the sibling of an autistic child. I didn’t read all the details – the book was targeted towards younger children. But it got me wondering again what it’s like for Big Man and the Princess to be the brother and sister of Little Man. How are they changed, how are they different from who they would be if not for autism being part of our daily world?

Every family has their stuff to deal with. Autism is what’s on our plate. Currently, they are in a different school than Little Man. That will be so for another year and a half. And, quite honestly, we still don’t know he will go to the same high school as they. If he does, how will that change their lives? They get that respite for seven hours a day. They get to be who they are, rather than “sibling to an autistic kid” being in their face constantly. But when they bring friends home, it’s there. Do they explain beforehand? Do they have to explain again? Does it bother them? Does it enter their minds when they’re building those outside relationships? Does it make them anxious?

Here’s the deal  – Little Man is high functioning, and while his social skills have improved immensely, his particular issues mean he can sometimes come across as just a jerk, rather than a kid with autism. Does that make sense? And then there are his quirks – carrying around stuffed animals, obsessing over particular video games and wanting to talk about them ALL THE TIME, needing to leave the movie theater multiple times during a movie when the stimuli is simply overwhelming him, often behaving like an 8-year-old rather than the almost-13-year-old he is but then frequently showing his extreme intelligence. I don’t know how new people, people who don’t really know us, know him, take that in. As siblings, do they, and how do they, prep other people?

Other than that, what is it like for them to be his brother, his sister? I know I lose patience with him sometimes. Trust me, there have been days I’ve seriously earned the Mother Of the Year trophy. Last week, the Princess had enough of his (what should have been thinking bubble) comments, and blasted him. You can bet it didn’t go over well. I completely understood her losing patience. Do they understand why he gets treated a certain way in certain situations? Why he might be allowed to not eat what we’re eating? Why he might get his phone when we’ve said no technology in some social situations? Why we still find him in our bed some nights and don’t always make him go back to his own room?

I’ve seen the Princess mothering him, managing situations to minimize the potential for meltdowns, helping him. Big Man seems less engaged that way, but I know it’s in there, I know it affects him.

If I allow myself to go there, I can nearly break with the thought their lives shouldn’t have to be affected by autism. I do believe it will, in the long run, make them more compassionate, patient, empathetic, understanding people who will defend and stand up for those who need it. I just wish they didn’t have to learn that first hand. What’s it like for them? I may never know completely. I know I generally keep what it’s  really like for me to be his mom to myself (and my blog). I wonder how much they’re keeping to themselves what it’s like to be his siblings?