What you can’t see

I took the kids to have their Christmas pictures done the other night. I’ve taken them to a portrait studio for Christmas pictures every single year since Big Man was a year old and the Princess a small infant. It’s just my thing…..I get pictures done. There are tons of photos of them all over the house.

I posted their silly picture to Facebook yesterday. Everyone was saying what a great photo it was. Here, I’ll let you see for yourselves:

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I think the thing about it that everyone loves is that Little Man just looks so happy. What isn’t in the picture, what you can’t see, is that ten minutes before this particular shot was taken, he was on the verge of a full meltdown, and had already kicked the wall twice. What you can’t see in this picture is that the Princess was really pushing back on having pictures done at all, much less the total lameness of Christmas pictures with her siblings, with a color scheme. What you can’t see in this picture is all the sighing and eyeball-rolling that had been going on for over an hour just before this shot was taken. What you can’t see is my stress, frustration, and worry. What you can’t see is me reminding Little Man to NOT make the creepy smiling face the photographer didn’t seem to notice in any of the other shots, like this one:

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What you don’t see, most of all, is me struggling to hang onto them being my babies for just one more year, for just a little bit longer. What you can’t see is that no matter what people post on social media, no matter how perfect a photo might make them look, there is life behind that photo. There are meltdowns, attitudes, general mayhem, arguments, sighing, anxiety.

I kind of shook my head at all the comments. How could they not see? I am THANKFUL for the comments. It is a great shot of my Herd. And I do love the photo. I just know everything that happened while obtaining that photo. I don’t mean to sound like a complete Grinch, nor that I can’t accept a compliment on a great photo of my three. That’s not my point at all. It was just a good reminder for me that no matter how amazing the photo, what you see in a snapshot of a single moment, isn’t all there is to the story, for anyone.

And just because I’m a shamelessly proud momma, here’s the one we had printed.

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Of Epic Proportions

Little Man had his last soccer game of the season last night, a playoff game. He was doing as well as he does out there, running and attempting to be a help to his team. But then a ball glanced off his hand and the side of his face towards the end of the first half, and it went to total hell from there.

He dropped like a rock. The ball didn’t hit him that hard. I wasn’t worried at all about concussion or anything. It really had been more of a shave of the ball across the upper side of his head. But he went down, and wouldn’t get back up. I was about ten yards away from him on the sideline. I could see he was starting to cry. Spouse ended up hauling him off the field.

Little Man was crying. I’m sure he was angry and embarrassed, the actual pain minimal. He flopped to the ground when he reached the sideline.  I made him move as he was in the way of the sideline ref. He was pissed. A meltdown of epic proportions ensued.

It’s been a long time since he’s been that bad, in a public place. He screamed at me to not ask him stupid questions like where did the ball hit him and if he was okay. Oh yeah, I got mad right back. He didn’t stop there, moving on to yelling about being useless and worthless (speaking of himself). I just wanted it to stop. The parents around us were trying to not hear, were looking anywhere but at us. It sucked. It was mortifying. I needed him to stop yelling. I could feel my heart racing.

I felt bad for him, but I felt bad for us and everyone around us. If they didn’t know he was different before, they definitely realized it last night. I managed to keep my voice low and calm, but I did tell him he needed to just stop talking right now. It was awful. The yelling mostly stopped, but the tears continued, loudly. While I wanted to take him in my arms and hold him close to help soothe him, I also wanted to run away, wanted to be anywhere but there in that moment.

It felt like forever until he stopped. It was probably five minutes long in total, but time slows in those moments. He did end up going back into the game in the second half, and was laughing and talking with his teammates by games’ end (they lost so playoffs are done for them). I was a little bruised and it took me a bit longer to recover, aided by some wine when we got home.

In times like last night, I really hate what autism and all its accompanying diagnoses, does to my little boy. It sucks to see him hurt so much. It sucks to see the stares, or the attempts of others to avoid staring, like we’re a car accident they’re driving by. I hate how it wraps through his brain, making him think and say the worst things about himself. It makes me fearful, sad, and so angry.

Therapy

Little Man had intense, one-on-one therapy for over a year when he was first diagnosed on the spectrum.  He reached a level the services at school were sufficient and we were moved to an as-needed basis with his therapist. He hasn’t seen her in nearly five years. But given the changing social dynamics he’s encountering, the fact high school is looming, and because of his heightened anxiety and thoughts of self-harm the last month or so, we decided it was time to add his private therapist back into the max.

We saw her this morning. I’d forgotten how calming she is. Her voice and manner put me to ease immediately. She’s the perfect level of letting him wallow in his opposition, while at the same time insisting upon certain behavior. She remembered him, remembered our family, and while not happy for the circumstances, was happy to see him again and hear how he’s doing. He refused to talk or answer any questions initially, but about twenty minutes in, we were talking about high school and he joined the conversation. It was fairly easy for her to dialog with him after that.

He asked to see his school therapist once as week in addition to his outside therapy. That’s not something he’s expressed before, but hey, if he wants it, I’ll ask for it. We have his IEP meeting next week – he is required to become part of that process now – and we want him engaged, accountable, and to contribute by stating his needs and wants. This was a good first step towards that end.

His therapist asked why we were there. I told her the discrepancy between his social and emotional skills and that of his peers has widened to a very obvious place once again. We want to help him bridge that gap. Also, the anxiety and depression levels have risen in the last couple of months – we’re seeing a return of the anger and tears to a place we haven’t dealt with in a long time. And then there are the thoughts of self-harm. He needs an outlet, a safe place to talk. Therapy gives him that. Thank God for good therapists.

So we’ll add this back into our routine, once a week, for a couple of months and see where that puts us. I just need to know my boy is okay, and on a good path, with good tool in his toolbox that he’ll actually use.

 

That’s not how this works, friend

So, we have a chore chart in our house. It hangs on the fridge in the kitchen, and kids’ jobs rotate every week. They do everything from feeding the dogs and taking out the trash to sweeping the pool and helping with dinner. They earn points for each chore completed, and, if they earn enough points (we have three levels), they get rewards. We’ve had this chart forever. What is changing is the enforcement for Little Man, and oh, he is so not happy.

I will admit – I’ve let him slack on a lot of stuff. I try to be tougher, but sometimes it’s just easier to do it myself than deal with the battle. Here’s the thing, though….after three full IEP evaluations, which each have included testing for PE as well as time with the occupational therapist, we know he is fully physically capable of everything his siblings are capable. He can do it all, he just doesn’t want to.

Last night, we had a full-blown battle over putting dinner away. He and Big Man got into it. I told him, under no uncertain terms, he is fully capable and therefore is fully expected to complete all his chores, unassisted and without accommodation anymore, no arguments. He threw a fit. It didn’t help Big Man was kind of being an instigator, but when Little Man said something derogatory to me, the discipline came down hard. Oh, he was so not happy.

Here’s the problem with high-functioning autistic kids…..they are entirely too smart for their own good sometimes. He can, and he will, manipulate. Now, every time he says he wants to hurt himself, we take his words seriously, within context. So last night, he used those words again, even texting his friend – with whom he knows I’m friends with his mom – that he was going to hurt himself. Multiple texts later, I was angry. I knew he wasn’t going to hurt himself. He was using that as a threat to get me to give in. I called him on it, and said never again will you use those words unless you seriously mean them. I let him know that under no circumstance was he to use that to manipulate anyone or any situation ever again.

I will not allow him to use his autism as an excuse to get out of anything. I’m sorry, bud, but you are totally capable, mentally and physically, of feeding the dogs, cleaning your room, emptying the trash, unloading the dishwasher, clearing dinner, sweeping the pool, and helping put groceries away. And when you do something wrong, willfully, you WILL get in trouble, and you will take the consequences without threatening self-harm.

I will not allow him to manipulate to get out of doing things he doesn’t want to do, or to get us to cave on consequences. Is it a fine line? Certainly….because we know there’s so much co-morbidity between diagnosis for people on the spectrum, anxiety and depression are just part of life. And we do know he HAS meant those words before. And I am absolutely terrified that someday he may hurt himself. But I still will not let him put that in his toolbox as an avoidance or manipulation tool. That’s not how this works.

This may sound harsh. Trust me, I’ve done battle with myself enough times over it already. What is comes down to is, yes, he’s autistic and that means he has a certain level of disability. But we won’t let him use that as a crutch to get through or out of things he is fully capable of doing.

This Familiar Place

We’re almost two months into this school year. For the past week or so, I’ve noticed some regression in Little Man…..more tears, more outbursts, a couple of full-blown meltdowns. His anxiety level is up.  He’s pushing back more. Then we have that situation I wrote about last week. He’s not really interested in going back to that particular class. Friday and yesterday, he spent significant time in the nurse’s office complaining of a bad headache. Friday, I ended up bringing him home. Yesterday, I took him ibuprofen at 9:30, but then got another call two hours later to come get him.

He’s fine. No other physical complaints, just the headache that only appears at school.

Here’s what I think, having done this school thing with him a few times before. I think he’s maxed out. Does that make sense? He just reaches a certain capacity to tolerate it all, and then hits a wall. We typically see this happen six weeks or so into the school year. It doesn’t even take me a few days or weeks to catch on to what’s happening. I just  know, as soon as we see this regression start it’s because he’s tapped.

I can’t pull him out of school just because he’s reached a wall. I can’t let him skip doing his work just because he has little left in  his tolerance tank.  I can’t let him just escape. I do give him a little space where I can, but we can’t allow him to retreat completely.

It’s so painful to watch him struggle. It hurts my heart. The world isn’t always kind to everyone, much less those with different needs. Every time he goes sideways, I mentally go back to that night he told us this was too hard and he didn’t want to do life anymore. I’m terrified….that is my biggest fear for him, always. Once your child says those words to you, you will never get over it. It’s always there in the back of your mind. But then there’s a fine line between acknowledging that’s there, and pushing him through situations because that’s what he has to do.

We are where we are. We’ve been here before. It’s a familiar place. Even knowing it’s probably coming doesn’t make it any easier once you notice you’re there. But we dig in, we love him through it, we keep fighting. That’s just what we do.

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?