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?

Autistic Halloween

Oh yes, Halloween….and Autism….not always a good blend. Little Man has been doing Halloween his way since about third grade. And we just roll with the flow anymore. What does an autistic Halloween look like? I guess you’d have to ask every autism parent, because if you’ve met one autistic kid, you’ve met ONE autistic kid. They’re as different from each other as everyone else. This is what our Autism Halloween looks like…

Costumes: He always wants the costumes with all the parts and accompanying swords, etc. We don’t typically make it two houses before I’m carrying random parts. By the time he gets home, we’re lucky if he still has the clothing portion still on. Forget asking him to manage whatever sword, flashlight, scythe, etc that goes with the costume AND his candy bucket. We don’t even let those out the door to head out into the hood.

Candy: He HATES chocolate. Won’t have anything  to do with, although he keeps telling us every birthday that maybe this is the year he will try it. We have photographic evidence he used to eat chocolate, when he was about two years old. This is a huge problem when trick-or-treating, because chocolate seems to be the candy of choice. He frequently asks if they have candy other than chocolate. I remind him every single year to just let it go – we’ll swap with his chocolate-eating siblings we get home. I try to tell him it’s rude to ask for a specific kind of candy when trick-or-treating. This is probably the one that gives me the most anxiety every single year.

Trick-or-Treating: He really wants to be out there with his friends. He will get so completely amped up. We make it maybe half a block, if that, before the stimulation overwhelms. We’ve taken breaks. We’ve walked him back home. We’ve bribed him to get completely around one loop in our neighborhood. When we do let him come home, he gets upset he isn’t out there with his siblings and friends still roaming the land. It’s heartbreaking to see him want so much to be able to handle it at the same time he’s completely tapped and overwhelmed.

Cats: We have two cats, one of which is all black (KiKi). About 3pm, he’s stressing about where KiKi is, terrified someone will try to take her and/or hurt her because, well, black cat on Halloween.

As with any other holiday/fun thing, his anxiety can get the best of him. We work through it as best we can. We give him what he can handle. We know his limitations. We know his Halloween doesn’t look like other kids’, but he still experiences the fun. It’s his own autistic Halloween.

Trading Places

When Spouse and I first met, I was the outgoing and social one, he was the quiet, introverted one. My friends and family were worried in the beginning he was too quiet. I knew it just took him time to warm up to people and open up. I’ve noticed in the past four or five years, we seemed to have traded places. I would consider myself more of the shy, reserved, quiet person I was growing up. Now he’s the one always putting stuff on our social calendar. He’s the one wanting to go, and do, and be with. I’m super content with quiet nights at home – maybe because I don’t get them very often. But I find myself forcing myself to be social, the same I used to do when I was in middle school and high school. And I will reach maximum capacity at some point in any given outing/event/party.

I don’t know when things started changing. If I were being honest, I might have to say it was when we moved from Northern California to  Southern. I left everything behind – career, family, friends, church…all things familiar, comfortable, supportive, safe. I don’t regret our move one bit, other than I miss my family, miss my kids growing up close to their cousins. But our life here is way more than it would have been had we stayed where we were. I do think I lost all confidence after the move. Having to start over, find a new job/career, make all new friends, find my place in our new world…..that’s really hard on a person who is, behind it all, shy, insecure, unsure of herself.

So many of the old fears and insecurities have returned. I get anxious getting ready for a party where Spouse will be the only person I know well, while he will know almost everyone. I get anxiety walking into a social situation alone, even when I know everyone there.

I just find it odd that, over time, we’ve traded places. Has anything like that happened in your relationship?

Conference

It’s the time of year for parent/teacher conferences. We had Little Man’s Monday afternoon. I’d been a little bit nervous about it since getting the notice a couple weeks ago, especially after reading the social story for his days at school. We struggled mightily last year to get him to stay in class long enough to participate in the lesson, and get his work done. And then he wasn’t bringing his work home to finish. It was a battle the entire school year. How would that affect him academically in the long run? He’s a smart kid, but even smart kids can fall behind if they’re not doing the work.

I’ll admit, I was also a bit nervous about talking with his teachers (he has two main teachers this year, plus his special ed teacher). It’s always this thing for me – that his teacher(s) will see through the prickliness to the amazing, gifted boy inside. He has so much to give and share, but it takes a certain type of person being patient enough to be allowed in to see that.

Let’s add to all of this, the conferences are student-lead. He had to walk us through his progress report. When he *has* to do something, he can shut down, go completely silent, not comply. But comply he did. I was amazed. What struck me the most is his self-awareness. He totally knows his strengths and the areas he needs improvement. He explained them all, as well as his plans for improvement where he needs it. I was stunned. He’s completely in tune with what we as his parents and teachers know. We didn’t have to tell him.

It seems he’s blossomed this year. I think it’s a combination of things….he’s familiar with the school, its rhythms and routines. He has a good core group of friends at school and in the neighborhood. He has matured somewhat. I can’t help but think lowering the dose of his ADHD med, and thus taking away some of the resultant anxiety, has helped him as well. His meltdowns are fewer. His anxiety is lower. His patience level is  up. His frustration level is lower. That means he is in class more than he was last year. He’s finishing his work before he bails. He’s taking more time with his work. He’s excelling academically, and he’s proud of that.

We still have things to work on, things we need to make sure start happening so that wherever he ends up for high school, he is prepared in all ways. I did breath a sigh of relief walking out of our conference on Monday. I’m going to hang onto that for a bit. The future will come when it comes and we’ll deal with it then. For now, I’m back to reveling in this.