Duck!

I’m not talking about duck as in a bird. Nor am I telling you to duck. You know what autocorrect does to a certain word? Yeah, that.

I wrote about the kids laughing at Little Man last week.  He’s been reluctant to go back to science class since. I’ve seen the return of all his aversion techniques…going to the nurse’s office, leaving class to go to his quiet space, outbursts, tears, meltdowns. Friday, the nurse called about an hour after school started. He was in her office with a headache that wasn’t getting better. He had fallen and hit his head on the ground at soccer practice Wednesday night, and although he’d had no symptoms since then, she didn’t want to take any chances. I brought him home.  He was fine all weekend, outside of a meltdown Saturday  morning over getting woken up to get ready for his soccer game. It wasn’t pretty, and lasted about twenty minutes, but then he was perfectly fine at his game as well as the rest of the day.  He was great on Sunday – no meltdowns, no outbursts, no physical complaints.

An hour into the school day Monday, the nurse called me again. He was back in her office with another headache, and would I bring him some ibuprofen so we could try to get him through the day. So I took him some ibuprofen. Two hours later, I got another call. He was back again, the headache wasn’t any better, would I come pick him up. Back to school for the third time that day, and I brought him home early.  Yesterday, he made it the entire day (I’d told him that morning I wasn’t coming to get him early at all), but when  I picked him up, he told me he’d “freaked out” at recess, that kids were laughing at him, but he couldn’t tell me what the situation actually entailed, nor what had happened before or when the kids started laughing. He could not talk about it without getting really upset.

I emailed his team last night. Something is going on, and it’s affecting him intensely. His SAI let me know they’re aware something is happening and they’re looking into it.

Today, Little Man called me. I was in the middle of work, and asked him to ride it out for a bit, see if his headache got better. He called twenty minutes later. I took him ibuprofen again, and, as I had to leave town for work, told him he’d have to call Dad if anything else happened. Not to make it sound like I put work ahead of him…..I’d never do that if I believed in that moment he was dreadfully sick or really needed me, and only me, to come get him.

My phone rang while I was driving. It was the school counselor. Little Man had spent much of the day with her, most of that in tears. He’s unable to verbalize to her what’s happening when the kids are laughing at him. And he told her it would be better if he weren’t alive anymore. Dear Lord. My breath caught. I explained we do take him seriously, every time he says this. We can’t not take him seriously, but we also know he learned those words are a ticket out of whatever situation he doesn’t want to be in. It’s a very fine line to walk. I ducking HATE this. I hate it. I hate that he hurts. I hate he can’t tell us why. I hate we can’t just snap our fingers and make it better. I hate the anxiety, the social deficits that make him reach this point. Duck! DUCK! DUCK! DUCK!

I did ask if we could add speech therapy back to his repertoire. I feel he needs help with pragmatics again, as social situations and dynamics have shifted over the last two years. His peers are in an entirely different place, and they are very aware his issues, which are once again much more obvious. And we know how very mature thirteen year olds are. We’re also going to call his old outside therapist and see if he can have some sessions with her. The problem with that is he doesn’t want to talk when he’s supposed to talk. Does that make sense? If it’s on his terms, he *might* talk. If it’s a scheduled thing, he’s more likely to push back and shut down. DUCK!!!

I’m exhausted. I’m fearful for my boy. I’m emotionally tapped. I feel I have to be with him all the time, have to be on my guard all the time, have to utilize everything I have in me on him. Which then leaves the question, what do I have left for Spouse, for his siblings, for my friends, for my job? How is it fair to any of  us, much less Little Man. DUCK!

My heart just ducking hurts.

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

In a heap on the side of a mountain

Oh lordy, but you knew this was coming, right? The Herd couldn’t go on a ski trip, even for one day, without having something to report, right? Sigh….heavy sigh….

We all woke up well before we needed. I’m pretty sure Spouse rolled out of bed about 3:30am, which means I was awake not long afterwards what with all the lights going on and off in the hallway, the bathroom, and his closet. Lord be. In defiance, I lay there another hour. As departure time was getting closer, I finally hauled my carcass out of bed to the shower. We hit the road a mere 15 minutes behind schedule, which is saying a lot for having to get five people out the door an hour before the sun even thinks about coming up. We made it to the resort, parked, and were second in line to pick up our lift tickets within two hours. We were on the hill 15 minutes after the lifts started. But let me rewind a little bit….

Little Man HATES lines. He detests them. Most of his freak outs happen when he has to stand in line for more than 30 seconds. We had prepped him that lines would be involved. But I was mentally pulling up the boot straps as we walked into the equipment rental building. Last time we did this, it took nearly an hour to get the waiver signed, and pick up boots, skis, and poles, and get a locker. We whizzed through in 15 minutes. Can I get an Amen???!!! We met back up with Big Man and the Princess (they’re snow boarders and their equipment was downstairs from the ski equipment), traded shoes for boots, shoved all the excess into our locker, and headed towards the bunny hill lift.

At the bottom of the bunny hill, we stopped to strap on equipment. That is such a process! Little Man started to get frustrated. He could get one ski on, but then struggled with the other. I could hear him start to growl. Spouse came over to help. Then we wisely decided to get closer to the end of the line – which was about 20 yards away – before actually putting both skis on. Up we go, towards the end of the lift line. And then it really began….Ten minutes of struggling, Little Man dropping to the ground a few times, some yelling, much gritting of teeth, him facing backwards, sideways, and nearly upside-down…..We finally got him on the skis, and in line. Whew, right? Yeah, not so much.

It was our turn to slide down the small ramp to get onto the chair lift. Halfway down, I don’t even know what happened, but his skis crossed, one ski came off, one leg went sideways, and he dropped to the ground, tears flowing. And yes, they had to stop the lift. Spouse was trying to pull him up. There wasn’t really anything I could do but grab his poles. The attendant came over to help. Skis back on, poles in hand, all three of us standing, the chair came behind us, and we sat down for the ride up the mountain. We all breathed…..until we got to the top, and the entire episode repeated. I kid  you not. His skis crossed, one popped off, one leg went wonky sideways, poles shot out, and he hit the ground, crying. They had to stop the ski lift again.

We somehow got him over to the benches the boarders use to hook in. He was crying, and he was yelling. I was trying to calm him. Spouse was trying to help him and stay patient at the same time. We started down the hill, and the same damn thing happened all over again. Skis went sideways, one fell off,  his other leg went out, poles flew, and he was in a heap, on the side of the mountain, tears flowing, angry words flying. He was completely frustrated, sad, angry, upset. Full meltdown mode.

Spouse sent me on ahead. I’ve mentioned skiing isn’t really my gig, right? It took me fifteen minutes to get down the bunny slope. I looked back up from the bottom, but Spouse and Little Man were nowhere in sight. I waited, and waited, and waited. Nothing. I finally found Big Man and Princess. They said Spouse and Little Man were still up there, with Little Man losing it completely. After about an hour, I finally went back up, and found them when I was almost back to the bottom. It had taken Spouse 90 minutes to get Little Man down that hill 1 1/2 times. It. Was. Brutal. I was saying all the bad words to autism right then and there. There were all those looks from people around us. I’m sure they were wondering why we would bring our kid skiing if this were going to happen.  Trust me, I was pretty much wondering the same thing.

At the bottom of the hill, he was  exhausted and hungry. We decided to eat, and then re-evaluate. Food usually helps, but even after inhaling a big hamburger and chips, he said he was done. He’d made it as long as I’d kind of expected, although I’d also expected a half day would involve more than 1.5 runs down the bunny hill.

Spouse took Big Man and the Princess back out for some runs down the Intermediate slopes.  Little Man and I changed back to our regular shoes, turned in our equipment, stopped by the car to grab some technology, and hit the lodge. He had a soda. I had a beer.

Some might think the day was  a total fail. It was miserable at points, embarrassing at others, beyond frustrating much of time, particularly for Spouse. But you know what, he did it. It didn’t look like other eleven-year-olds would skiing, but he did it. It was hard. But he did it. I posted on my personal FB to a friend this: “The good news is, he did it. Twice. It was ugly. There were a few bad words said, and LOTS of those looks. But he did it, and it pushes his window a bit wider, even if he never does it again.” And ain’t that the truth? Every time he does something that’s hard and uncomfortable and challenging, we may end up with tears and lots of yelling, but it pushes him outside of his comfortable box. He learns. It builds his confidence in his own ability to do things he’s not sure he’s capable of.

We did decide the next time we go, he will take a lesson. He’s had lessons twice before, but we just feel it will start things off better if he goes at it slowly rather than, “Here’s your skis, here are your poles, slap them on, and let’s go” the way we did it Saturday. I’m sure they have instructors up there who know how to deal with autistic kids. It’s too prevalent anymore to not have an experienced instructor.

He did it. We all survived. We survived Herd-style, but we survived. the Herd ready to hit the slopes

Some days, he’s exhausting

Yesterday morning was not one of my more-stellar mornings in mom-land.  But let me back up a moment……

Part of high-functioning autism is not recognizing tone….at all. That skill does not come naturally to him. He’s spent years in speech and other therapies learning to take in context, what accompanying facial expressions might mean, what the most positive intentions behind the words he’s hearing may be.  It’s not an easy nor quick process for him, which is totally not functional in real-life situations.  Needless to say, he frequently takes words and interprets the most negative intent, and the spiral to meltdowns and angry outbursts is on.

Corrections, adding information, constructive criticism aren’t usually handled well.  Most days, we take it for what it is, take a deep breath, slow down, let him process. Yesterday was one of those days. Exhausted to a level I haven’t been in months, I had an in-the-red patience level. I tried to slow him down, but he was having none of it. He started raging. I yelled. I hate when I do that. It was effective in the moment, but has long-term repercussions. Not five minutes later, the same exact episode repeated. You’d think I’d have taken a breath myself, but no, it was almost exactly the same outcome. Gah!! As I walked out the door to take Big Man to school, frustrated, worn out, upset with myself, upset with him, he let one more outburst fly.  I turned, at my wits’ end, and told him, “Some days, you’re just exhausting.” Oh yeah, another mom win right there.

We talked later. I had a ridiculously long day that ended about four hours after I wanted it to end, but we did squeeze in a talk about the morning’s events. He blessedly forgave me. But honestly, some days, he’s completely exhausting. Being a parent is work. Being a parent to an autistic child….it’s a LOT of work some days…most days.  I just don’t usually tell him he’s exhausting. I can’t get that back. It’s out there. He’s heard it. He knows it. He also knows that most days, I have enough reserves to give him the grace he needs and deserves.

“I’m not good!”

There’s nothing so heartbreaking as your precious little boy telling you he knows he’s not a good person because he can’t always control his anger.

Little Man had a fabulous day at school yesterday….an amazing day at school. How do I know? Both his speech therapist and his teacher sent me texts, with lots of capital letters, what an awesome day he’d had. He didn’t have one meltdown, not even close. He didn’t have to leave the classroom at all. He advocated for himself when he needed his snack. He was actively participating in the classroom discussion without monopolizing with random information. He even helped a peer with math.

He spent the afternoon at his friend’s house, then came home and was calm, compliant, listening, engaged. I took the Princess to dance. He was fine while we were gone, fine when we got home. Then something minor sent him spinning. He stormed into the bathroom, slamming the door behind him, kicking the wall. I could hear  him breathing from where I was sitting – 15 feet away, and through a closed door. He came out after about ten minutes and flopped down on the couch, face crumpling, and tears flowing. “I’m not good!” he said. Oh, baby….my sweet, sweet baby.

He gets it in his head, if one “bad” thing happens in a day, then the entire day is the WORST DAY EVER. He also gets it in his head, if he has one meltdown or one outburst of anger, he is the WORST PERSON EVER. Good golly – sometimes, it’s more than I can take. Then he said, “I’m feeling *that* again”, code for thinking he might not want to live any longer. Suck it. I talked him down from that quickly. He gets confused between wanting out of a particular situation, and wanting out of it all entirely.

We had a talk last night when I tucked him in. I told him we all struggle, not one of us is perfect. I get angry, and sometimes I yell.  Does that make me the WORST PERSON EVER? (I write it in caps, because that’s how he says it) He shook his head no. Daddy sometimes forgets things we asked him to bring home. Does that make him the worst daddy ever? He shook his head no. The Princess sometimes falls when she’s dancing. Does that make her the worst ballerina ever? He shook his head again, putting it together in his head. Making a mistake, lashing out, losing your temper, falling down, crying, forgetting things….those don’t make us the worst, they make us human, normal.

We have variations of this conversation at least once a month.  It’s hard, and it sucks. I hate him thinking he’s a terrible person. We do get on him when he lashes out. We have to. It’s part of his learning process. We do give him checks, help him through the process of reining it back in. Some days, he’s better at it than he is other days.  I work hard to get him to understand we are correcting the behavior, we are as frustrated as he is with the behavior. We are not angry at him.

We are going to Pinterest some more ways to help him refocus when he feels himself getting to the angry point. You autism parent experts, suggestions are welcome.

 

Friday Favorites #14

It is #14, right? I’m going to have to start keeping track of this somewhere. I missed posting last week….we were traveling for Thanksgiving. When I’m with my parents, I just want to be with my parents, so outside of a little bit of work, I tucked my laptop away for the most part.  I considered not posting today….we had Little Man’s IEP meeting this morning, and I just picked up the Princess from school to get her fed and curl her hair before we head up to the studio and theater for opening night of the Nutcracker. But then I logged on earlier, and started reading a post, which lead to reading another post, and before I knew it, I had about 15 tabs opened. So, lucky you, here’s today’s list of #FridayFavorites

  • I don’t know a single person who doesn’t struggle with negative self-speak. I believe this is magnified in autistic people, at least in my experience. I ran across Julia’s word sanctuary post this morning. I think we all could use a word sanctuary, but I will probably put this into Little Man’s bucket of therapy goodies. Thanks for sharing, Julia. This is awesome!
  • If you’ve followed my blog for any amount of time, you know I’m a huge fan of  Tricia at Never Less Than Everything.  All Hands on Deck touched me particularly today, in light of the two recent mass shootings in the US.  It frequently feels like nothing is going to change no matter what I say or do. But that doesn’t mean I have to stay silent. One drop in the bucket is tiny when compared, but it’s still a drop. Keep writing, Tricia. You are touching so many people, and you are heard.
  • Domesticated Momster is ever-informed. Who knew today was National Bartender Appreciation Day?
  • I’m sure Jason is tired of me linking back to his blog (stalker much?), but when someone writes captivating stuff, it deserves a share. Some may find some of his posts controversial (I don’t), but his poetry…ahhhhh. Go check out this one.
  • Riddle from the Middle raises the question of public vs personal when it comes to her kids. My kids have basically grown up on social media.  They still have the right to tell their own stories as they see fit, or not tell them. They also  have the right to ask/tell me to not post or write about something. I honor that. They deserve that courtesy.  That wasn’t necessarily the gist of her post, but it made me think.
  • Have a love/hate relationship with flying? See it as a necessary evil? Check out Geoff’s poem on airplanes. Made me lol
  • We got to see karma in action when we were driving out to my dad’s last week. It was so fabulous, I couldn’t stop laughing. Seeing this post on Daily (W)rite brought it back to mind, and made me laugh all over again. What have you sent out to the universe today?
  • This one…Keith Garrett….ahhhhhh…the words just bring pictures to my mind.
  • I literally JUST started following Epi-Centered, and it was because of this post. There is so much I feel, so much I want to say about all the mass shootings, the violence around the world. This also touches on my fear with an autistic son who lashes out. He’s eleven, and small, but he won’t always be. This is one of the dark sides of having a child with a mental illness. But it also gives hope in that our love for him brings him out of the darkest days.
  • Lastly, partially because after surviving a two-hour IEP meeting, and the stress of Nutcracker hell week, added to the nerves for my precious girl dancing tonight and tomorrow, I could use a hug. And who doesn’t think a sloth hug (outside of the smelliness) wouldn’t be totally awesome? And hugs from baby sloths? SOLD! Here’s your weekly Cute Overload link.

Hope you all have an amazing weekend. I’ll only make you suffer through maybe one or two more Nutcracker references, and the Herd should be back to regularly scheduled programming next week. Now, I’m off to curl the Princess’ hair, Clara-style!

He’s Yelling

Oh, doesn’t everyone love getting emails from their child’s specialized academic instructor (SAI)? Some of them are good. Some of them aren’t so good. Some are half and half. But I always, always flinch when I see them come in.

I got an email from Little Man’s SAI yesterday. There was some good stuff first. I think she likes to soften the blow. She’s nice that way. But then the hammer comes down (with her, it’s a stuffed hammer, she’s just so darned nice, but a hammer nonetheless). Yesterday’s hammer was her letting me know he’s been yelling at other students at school. Typically, he yells when he’s frustrated, when someone won’t be quiet or leave him alone, or when someone is being annoying. Let’s just say, he yells a lot. I sighed heavily, as I’m doing now. I didn’t respond yesterday.

I made myself get back to her this morning. I cc’d his teacher. His yelling is a double-edged sword. On the one hand, it’s good. In his world, it means he’s comfortable in his environment. He wouldn’t be letting ALL his true colors show if he were still feeling uncomfortable with the newness of the school and the people.  So the yelling is actually a good sign that he’s settled in. It also tells me he’s advocating for himself, granted letting someone know they’re annoying you could and should be handled in a much better manner than yelling at them. But still, he’s letting his emotions be known.  So, yay Little Man!

Booo, hissss that he’s yelling. We’re working on it. He yells a lot at home. We know it isn’t a good way to make friends or keep friends.  Not many people are going to want to hang out with someone who yells all the time. You aren’t going to win many popularity contests if you yell constantly. And, as I said, there are much better, more acceptable ways of getting your point across.  We stop him when he’s yelling at home, remind him how his tone is being interpreted by the other person in the conversation, ask him to lower it, remind him to use his calm words to get what he wants or needs. Trust me, this goes on a lot.

I hope they (at school) don’t believe we just shake our heads at him when the yelling starts. It’s a battle we’ve been waging for a few years. I will never excuse it, but I do understand it. We just need to funnel all that self-advocating down a more acceptable path.