This Familiar Place

We’re almost two months into this school year. For the past week or so, I’ve noticed some regression in Little Man…..more tears, more outbursts, a couple of full-blown meltdowns. His anxiety level is up.  He’s pushing back more. Then we have that situation I wrote about last week. He’s not really interested in going back to that particular class. Friday and yesterday, he spent significant time in the nurse’s office complaining of a bad headache. Friday, I ended up bringing him home. Yesterday, I took him ibuprofen at 9:30, but then got another call two hours later to come get him.

He’s fine. No other physical complaints, just the headache that only appears at school.

Here’s what I think, having done this school thing with him a few times before. I think he’s maxed out. Does that make sense? He just reaches a certain capacity to tolerate it all, and then hits a wall. We typically see this happen six weeks or so into the school year. It doesn’t even take me a few days or weeks to catch on to what’s happening. I just  know, as soon as we see this regression start it’s because he’s tapped.

I can’t pull him out of school just because he’s reached a wall. I can’t let him skip doing his work just because he has little left in  his tolerance tank.  I can’t let him just escape. I do give him a little space where I can, but we can’t allow him to retreat completely.

It’s so painful to watch him struggle. It hurts my heart. The world isn’t always kind to everyone, much less those with different needs. Every time he goes sideways, I mentally go back to that night he told us this was too hard and he didn’t want to do life anymore. I’m terrified….that is my biggest fear for him, always. Once your child says those words to you, you will never get over it. It’s always there in the back of your mind. But then there’s a fine line between acknowledging that’s there, and pushing him through situations because that’s what he has to do.

We are where we are. We’ve been here before. It’s a familiar place. Even knowing it’s probably coming doesn’t make it any easier once you notice you’re there. But we dig in, we love him through it, we keep fighting. That’s just what we do.

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.

You can’t leave home without it

My bestie and her kids were here for a visit a couple of weeks ago. One of her daughters truly speaks Little Man’s language. They live on the same autism planet. They get each other, which is awesome. It also means we spread all kinds of autism awareness when we’re all out together.

We were out at lunch one day. The two of them sat at one end of the table, lost in their own combined world. BFF and I maneuvered them through food and drink choices, ordering, keeping them calm at the table, and getting through the meal. At one point, BFF looked at me and said, “There’s no vacation from it.” Yep, there’s no vacation from autism.

These babies of ours take it with them every day, all day. When we go out, when we shop, when we vacation, when we sit around the pool, when we go anywhere, autism comes with us. We can’t leave home without it. We can’t take a day off. We can’t simply forget to put it in the suitcase like that bottle of sunscreen that was left behind. Some days, some hours, that sucks more than others. Some moments, it’s perfectly fine.

We had highs and lows over the course of the week. It comes with the territory. I think my favorite part was their simple excitement of seeing each other, talking about their shared interests, and when he pulled out his sketch pad and pencils after she brought hers to the kitchen table. I feel blessed to watch them together, their particular bond.

We took them to a baseball game their last night here. They both rocked it, their way, which was completely fine. iPads, headphones, and phones in hand, they were fairly oblivious to the game, but they were there with the rest of us. Baseball the autism way.

We can’t leave home without autism, but we can see something people who don’t live it can’t see…we can see the purity of their wins, their strengths, their particular abilities.

Summer Camp

When the kids were little, we started putting them in summer day camps – typically at the Y, and mostly to keep them occupied, surrounded by other kids, learning to learn from other adults, and, to be quite honest, to give me a few hours of respite from three toddlers. As the years went on, summer camp became tied up in whatever sport they were involved in at the time….soccer, golf, dance……Last year, Big Man went away to Mammoth for a few days with the cross country team to train at altitude. Two years ago, the Princess spent two weeks in Orange County at a summer dance intensive.

We’ve had a much more difficult time with Little Man as far as summer camps go.  He did the Y one year I think.  Once he was diagnosed on the spectrum, I struggled with putting him anywhere. We had a disaster of a Lego robotics camp a few years back. I ended up pulling him out a couple days before the week was out. The instructors just didn’t have it in them to deal. I lost patience, and a bit of faith.

Last year, we found an amazing camp nearby. Well, one of my close friends found it online and sent me the link. Right away, it sounded perfect for our guy.  It’s was a coding camp…five days, six hours a day, of working with technology, generally through gaming. I won’t say he had a perfect experience – autism did still rear its ugly head a few times. But the director and instructors were willing to work with him. Not to mention, he wasn’t the sole high-functioning kiddo there. We were super impressed. Much more, he made one  very good friend he still keeps in touch with.

I started getting emails for this summer back in January. Originally, they weren’t going to have any sessions at the college nearby (a ten minute drive), but rather down in San Diego (45-60 minutes each way, depending upon traffic). I didn’t think we were going to be able to manage the logistics.  But then a few months ago, they did open sessions at the nearby campus and we signed him up right away.

This is the week of camp. He was anxious but excited yesterday morning.  He was talking about the programs he thought they might be using, really looking forward to learning.  But when I picked him up, the director said he’d had a bit of a rough afternoon. It is a LONG day – 8 hours to be exact. That’s a lot for him. Little Man wouldn’t even talk about what he’d done all day until a few hours after he got home. I do think he ran out of fuel, and lost the ability then to self-manage.  He was happy to go back today, waking at 6:30, and announcing, “Day 2!”.

I texted the director a bit ago, just giving him some hints and tips for dealing with Little Man. He responded right away, letting me know things were going well today, and that he was appreciative of the input.  Again, I’m sure our son isn’t the only spectrum kid they’re dealing with. He can’t be. But if you know one kid with autism, you know one kid with autism. They’re just as different from each other as anyone else.

I’m not picking him up today, as I have a work event, but I’m still anxious to hear how his day went. He is doing something he loves, so hopefully that keeps the issues to a minimum. And on Friday, we’ll get to meet his instructors and classmates, and see what he’s been doing all week.

Too Much

As I’ve said, Little Man has been struggling as of late. We have one more day of school. One. More. Day. He’s battling, but we’re seeing behaviors we haven’t seen in months. His toolbox is completely out the window. It sucks.

Yesterday, for Father’s Day, we went indoor cart racing. I was a little nervous about it, but didn’t really think it would be a big deal. It wasn’t ridiculously loud, and he would have a helmet on anyways. We watched four or five races. He seemed okay for the most part, although he was lashing out and had a bit of temper tantrum – more from being hungry and having to wait than anything else. We fed him, and waited for our turn.

When our race started, I hung back, not going too fast. I’m not much of a speed queen anyways – afraid of crashing or spinning out. I did pass him, and he seemed okay. But then people were passing  and bumping him, and he got stuck in a corner. He worked to get out, but couldn’t manage it. They had to stop the race and help him. He decided he was done, so they guided him off the course. Yes, we are that family that has to shut the place down. I was reminded of our ski trip last year when they had to stop the lift twice for us. He and I decided to ditch our second race.

We should have known. We should have seen it coming. We should have realized it would be too much for him – the speed of the people around him while trying to drive his own cart, his inexperience driving a cart, the noise, the anxiety of racing itself….too much sensory input, too much performance anxiety, too much stress. We should have seen it would happen. But he’s been doing so well, has come so very far.

I have to give him credit – he tried something new, something he wasn’t sure of. He did it, even if for just a brief period of time (I think he made it through three laps). We told him we were very proud of him for trying, because we are so proud of him.   While I felt defeated in a way, it also felt like a win, because he did try. Autism won for a moment, but it didn’t win the day. He may never drive a race cart again, but he did it.

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.

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.