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.

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.

Last Days

Oh lordy, but we are struggling through these last days. It seems an insult to have to carry on with regular school activities for one kid when two have been on their summer break for eleven days. My brain is totally not on reports, Open House, report cards, morning routines, nor on signing field trip/dance permission slips. This momma has checked out, and I do apologize to Little Man’s teachers and team.

He is having a rough go. They had a field trip yesterday. He wouldn’t say what happened, just that it was “horrible.” That may mean one small thing went awry, or it may mean he had a full-blown meltdown. Who knows, and I’m afraid to ask. There’s a dance at school Friday  night for the 5th-7th graders. We haven’t even discussed it. I have to keep reminding myself his Open House is Thursday night (can I send a surrogate, or would that be frowned upon?). I got an email from his SAI earlier today he has completely pushed back on being in the classroom for the 7th grade health class. While I feel the curriculum is important, appropriate, and not beyond his abilities/understanding, I don’t have it in me to fight him right now, nor deal with the fallout of pushing his boundaries. We’re both toast. My response to her was I was fine with him sitting this one out.

His anxiety is elevated. He’s done. He wants nothing to do with getting out the door in the morning. He has asked daily to take his plushy  to school (I’m still saying no to that one). He’s forgetting necessary items. He’s basically pushing back on almost everything. While I know he will have another adjustment period once summer does start for him, we are both so ready to be through this process of the end of the school year.

I looked back through my end-of-year posts through Timehop on my phone. So many of them reiterate this feeling – he’s over it, he’s stressed, he’s anxious, he’s ready to be done but he’s also afraid of the change of routine/lack of routine that comes with summer. No matter how much he matures and grows, change in routine and structure is an achilles heel for him, and it likely always will be. His tool box is forgotten by this point, and we all just hang on for the ride. It’s a bit brutal, and these are the days I would do anything to make this all right and better for him. This is when I raise a certain finger to autism, because it makes days that should be full of fun and excitement stressful and anxiety-ridden. Add to that fact his siblings are swimming, hanging out with friends, sleeping in and enjoying summer while he sits in a classroom, and you have a boy (and a momma) who is just over it. #bringonsummer

He’s Back

I”ve mentioned an uptick in Little Man’s anxiety as the end of the school year approaches. Much as we know it’s coming, the expected change in routine, the difference between scheduled and unscheduled, and even the differences at school as all the end-of-year activities come up throw him off. His anxiety shows in different ways – he’s harder on himself, he cries more easily, his outbursts are more frequent. He’s much better than he used to be, but the anxiety is part of him, part of who he is, and all his triggers are in play this time of year.

It’s been months since he’s come into our room during the night and snuck into our bed. He’s been sleeping better for a long time, and I contribute that to a growth spurt and hormone change. He’s also been in a much better, more relaxed and confident place this year. Whatever the causes, better sleep for him is better sleep for everyone.

He’s been in our bed, or tried to get in our bed, four nights in the last week. I woke at 3:30 this morning to a clicking sound. I initially thought it was Spouse getting a drink of water. Then I realized it was the familiar sound of teeth grinding and jaw-clicking. Spouse does not grind his teeth, and in my middle-of-the-night stupor, it took me a minute to figure out it was Little Man in our bed, grinding his teeth away. Sigh…in my bed, and grinding his teeth – a sure sign his anxiety is at a high level.

He has 10 more school days. We will have the inevitable fallout of him adjusting to the summer routine/non-routine, so I figure I have about a month of him crawling into my bed most nights. I’d just gotten used to him staying in his own room and sleeping soundly all night. That anxiety-fueled, teeth-grinding, flop-around-on-the-bed insomniac is back. Dang it all anyways.

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.