Once Again

I’m once again faced with the situation of Little Man having  new friend – one who has invited him over to hang out, and to go to the zoo at some point this summer. He went to this friend’s house for a birthday party yesterday, and even over an extended afternoon, seemed fine. But I find myself faced with the dilemma/decision/choice of telling this friend’s mom about Little Man’s autism.

Maybe she knows, or at least senses something. She didn’t say anything yesterday when I picked him up, but she has to wonder why a 13 year old chooses to hang out with a 10 year old. She said my guy waits for her son by the gate at school each morning too, and I know they spend hours facetiming, talking all things video game.

I haven’t had to struggle with this issue in a few years. What do I tell the parent of a new friend, when do I tell that parent? What’s best? What’s right for all involved?

If you didn’t know he’s autistic, you may just guess he’s either a lot younger than his chronological age, or just very immature, unless you have the pure pleasure of seeing him in meltdown or tantrum mode. Then you know for sure something is different. I don’t even know if his friend realizes he’s autistic.

I think part of me just wants him to be able to engage with friends without having Autism hanging over his head, part of me wants his life experience to be “normal” and me not have to consider this decision. But then am I being fair to that parent by not giving them fair warning, especially when they are going to be in charge of my child for a few hours? Sigh…….

What would you want to know about your child’s new friend, and when would you want to know it?

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.

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

Taper Week

I am discovering that as much of a love/hate relationship I have with running do I have the same with taper week. For you  non-runners, the week before a race, you taper your runs/activity to rest your legs and body in preparation for hauling yourself through 13.1 miles of running. I did one short run Wednesday morning, and walked a couple of miles yesterday. Today and tomorrow, I will just do some gentle stretching and use my foam roller, but other than that, will just rest.

I feel  like a lazy slug. After weeks of training, not running makes me lethargic. It also gives me time to think. That’s not necessarily a good thing. Since the field trip debacle of Wednesday, Little Man is struggling a little bit. He’s either doing amazingly well, or he’s totally falling apart. There’s no in-between at the moment. He had mild tantrums last night and this morning. He’s normally pretty easy and happy on Fridays. That wasn’t the case this morning. He stomped around his room after his bath, frustrated with finding sweatpants to wear. He stomped down the stairs because it was later than he wanted it to be. He started to cry because he thought his brother took his french toast sticks out of the toaster. He banged the cabinet door because he couldn’t find a plate he liked. He was quiet and sullen in the car on the way to school. And since I’m not running today, my brain doesn’t have the outlet to work it out before my heart just starts hurting.

He will be fine. I know he will be fine. But every time he has a bad day, or throws a tantrum, or cries it breaks my heart. Right now, I’m tired. I know the big picture is there and it’s amazing, but all I can see in this moment is the struggle and the battle. I’m not trying to make him fit a “normal” mold. I don’t want to change him. I want so desperately to help him. When I can’t help him, when I can’t help  myself be okay, I want to bury my head, escape from the world, and just cry.

So, taper week…not so much my friend right now. I’ll appreciate it come Sunday morning. I know its purpose. It just isn’t helping me deal with life right now.

Where’s my sign?

There are days, I want a sign that reads, “I’m not a bad parent. He’s on the spectrum. Please excuse and ignore the tantrum.”  Yesterday was one of those days.

We had a pretty good week with E last week. Michael even commented Thursday evening how well he was doing. He was in a decent mood. The tantrums had been minimal, outside of the normal morning battle to get him out the door to school.  He was involved in conversations at home and at school.  He was learning a new game in class with two classmates and not freaking out. He was engaged, conversing, compliant. It is on those days or weeks that I can almost make myself believe we’re not in this world of PDD, that things aren’t so bad. And then we have days like yesterday.

Every time we have to go somewhere he wants nothing to do with, I know it has the potential to go completely sideways. I do everything I can to minimize the damage – let him know what’s coming, take snacks and drinks, bring his DS or whatever to keep him occupied, make sure he’s dressed weather-appropriately – but even managing to remember to do all of that doesn’t mean he won’t throw a complete fit at some point during the day.  Saturday he wasn’t perfect, but he was survivable in spite of the fact we were at the fields from 9:30am til nearly 4pm.  Sunday I took him with me to church and choir rehearsal instead of having Michael take him and Ethan having to get through two long soccer days in a row. Ry’s team made the finals so we went to the fields after choir. I thought we would be good to go. Only one game…he had eaten, he was warm, he had my phone to play with. And then it all went to hell, quickly.   A little girl walked by and wanted to see what he was playing. He refused to let her see. I told him that was rude and inappropriate. The little girl just looked at me and walked away.  It went downhill from there. I don’t even remember what particular thing set him off, but he started yelling and screeching. People from another game completely were turning and looking. I stared straight ahead. I couldn’t give in and take him to the car – that was exactly what he wanted. I did take the phone away, which set him off again.  And he started crying. I started sweating. And I wanted to cry too.  I wanted to explain to all of those people why he was throwing a tantrum. I wanted them to understand it wasn’t my fault, it wasn’t E’s fault. My heart was breaking for all of us.  I wanted a sign right then to hold up in situations like that…..something that would quickly explain why it was happening.  Days like that, I just want to crawl into a hole, bury my head, and bawl my eyes out. Why does it have to be this hard? Why him? Why us? If those staring people could see and understand for one minute how hard it is some days to try to have a “normal” life when I’m waiting every second for just those type of tantrums to occur.

He is doing better, some of the time.  There are days the sunshine is so bright, I want to forget those stupid letters attached to his name. There are sunshine days I can’t seem to let myself enjoy because I know the darkness will be returning.  And when I look into the future on days like yesterday, the view is bleak indeed.  I could quantify this by saying he isn’t that bad in the grand scheme of things. It could be worse. I know what we deal with is minimal compared to so many others. But again, this is *our* journey. Some days I’m grateful it is what it is, and days when it just sucks. I get exhausted thinking about it. Therapy is helping – I see definite implications of that.  But it’s almost like being in the NICU again….two steps forward, five steps back. I want to stay in the sunshine, move only one direction (forward), and not have days like yesterday where I’m sure people are wondering what kind of parent I am for letting my 7-year-old behave like a two-year old.  I don’t want any more days where I have to wonder where’s my sign.