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.

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.

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.

Radio Silence

You’ll notice I’ve been fairly quiet on the autism front lately. Honestly, he’s been in such a good, stable place, and I’m trying to take it all in, revel in the sunshine, because I know the dark days will return.

School is going so well for him this year. I chalk it up to him  having two teachers and an SAI who have found the perfect balance of tough-love and compassion. They push him to his limits, and sometimes a little beyond. It’s helped him grow and center this year. It’s truly a relief to see him out the door in the morning and not be a basket-case of stress all day, waiting for a phone call or email. He forgot to take his ADHD meds Friday morning, and I couldn’t get them to him all day, but he survived, and said he had a great day (his teachers may have had something else to report on that, but I’m of the opinion at this  point of don’t ask if you don’t want to  know the answer).

He did well over Break too. Oh, he had his usual Holiday anxiety, and a couple of small meltdowns. He does struggle yet with lack of routine and changes in routine. He did pop out of the Star Wars movie three times to go to the bathroom (read: take a break from the sensory input), but only once when we went to see Fantastic Beasts and once during Sing. His general anxiety comes and goes. But honestly, he’s with his friends more than his neuro-typical siblings are with theirs. I hear him laughing, talking, engaging, leading, compromising. He has his moments – times I need to tell him to check his tone, deal with his siblings and friends wanting to do something other than what he’d rather do – but for the most part, he’s just in a GREAT place. So we’re taking it for what it is, and going with it.

We watched The Accountant last night. Definitely saw it through different eyes than I might if I didn’t have an autistic child. It was a decent action movie, but it did make me think about what my precious boy goes through, how he sees and interprets the world. I was also reminded he will find his way, his own path, learn  how to deal in this world. He will be okay, and that’s what matters. He’s a brilliant boy with a huge heart. I couldn’t ask for more from any of my children.

Came across this picture of him on his second birthday, and it just made me smile – there’s such joy on his face..little-man-in-balloons

 

The School Dance

Little Man is in seventh grade, which is technically  middle school around here. Middle school is 6th through 8th grade. His school though is really more of an extended, upper-grade elementary school, 4th through 8th grades (it’s 4-7 this year, and will go 4-8 next year).  They don’t change classrooms and teachers for every subject (he has math and science with one teacher, language arts and social studies with another teacher). They don’t have a locker room nor do they change for PE. The school looks and feels like an elementary school, for the most part.

The staff does realize their school is unique, which is great, but it also means they need to take steps as the kids progress to those upper grades on campus to prepare them for high school. With that in mind, the sixth and seventh grade leadership asked to be able to hold a dance for just their grades, for Halloween. I didn’t think anything of it when we got the recorded call from school with all the info. I didn’t think there was any way Little Man would willingly go to a school dance. So imagine my surprise when he brought the permission slip to me to sign! He wanted to go. All-righty then!

The dance was after school yesterday, running from 3pm – 4:15. I’d talked to him over the weekend and again yesterday morning he would have to stay the entire time as we were carpooling with his friend A, who is also in seventh grade. He seemed to get it. And he seemed okay with it. I told him to expect it to be loud.  “No worries, mom, I have my headphones!”

It was 3:20 when my phone pinged with a text. He said it was really loud. I told him to put his headphones on. He said he did, but it was still too loud. I reminded him I’d told him I was not going to pick him up early, and then when he asked why, I reminded him we were carpooling and it wouldn’t be fair to make A leave early when he was having a good time. Little Man sucked it up.

I arrived at school right at 4:15. I could see him pacing in the lobby. He had his headphones on, backpack in hand, ready to bolt out the door. One of my friends said he’d been there for some time, pacing and anxious. I could see the stress on his face. I don’t count it as a loss however. He went to a school dance. Yes, he only stayed in there for maybe a half an hour at maximum, but he went. He put himself into a social situation willingly.  He didn’t stay inside the entire time, but he went. My autistic child went to a school dance of his own volition. Isn’t that awesome?