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:

P3

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.

 

His Perception

I had an impromptu meeting with Little Man’s principal yesterday afternoon during after-school pickup. It was positive – I know they have LM’s best interests at heart. As the principal put it, they’re “all hands on deck” for him, particularly now, given what’s gone on the last few weeks.

Little Man hasn’t been going to class. Lord knows what he has been doing, but he hasn’t been in his classrooms. We’re working to fix that. The problem is he’s sure anytime anyone laughs when he’s nearby, they’re laughing at him, making fun of him. His teachers, SAI, and the principal are trying to catch it in the moment so they can help him see it is his perception, not reality.

Little Man has always had this thing….if one “bad” thing happens during the day, then the entire day is the worst day ever. If something bad happens during a certain activity, then he’s sure it’s going to happen every single time he does that activity. If someone laughs at him once, then every time that person laughs, he’s laughing at him. That’s his perception, skewed as it may be. Our job is to help him see that’s not the case. It’s tough work.

We have to help him overcome his fears and worries. We have to help him understand his perception isn’t always the way it really is. We have to move him past this hurdle. But this is part of his autism. his reality. He perseverates, gets beyond anxious, then does everything he can to avoid whatever situation he’s worried about. In the meantime, his grades fall and he loses friends. It sucks.

He has to be ready for high school….moving between classes, staying in class the entire period, managing social situations that are unavoidable. We have to help get him ready for that, so we’re all utilizing some tough love to get him past this current hurdle. We’re back in a phase of being on high alert nearly every minute of every day.

As for Halloween, he had probably his best yet. He went out with his friend across the street. I was not with him. Normally, he taps out after about the fifth house. This year, he was out for over an hour, and made it all the way around the loop. Then he sat in the kitchen with Big Man and a bunch of high school boys, interacting and talking. At one point, he did get a bit overwhelmed. He just looked at me and said, “I’m getting anxious…it’s too much.” I got him to a quiet space for a few minutes, but he recovered quickly and then was right back, re-engaging, laughing and talking. Huge wins, all night long, for him.

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.

The Other Side?

For the last few weeks, I’ve been haunted by fearful thoughts. If I’m honest, I’ve had these fearful thoughts for four years, ever since the first time Little Man told us life was too hard, hurt too much, and it would be better if he were dead. Once someone you love tells you those particular words, and has a plan for how to go about it, you never, ever forget. It’s always there. It can’t be un-said. It can’t be taken away.

We talk frequently about “getting him to the other side” of growing up, getting him to adulthood, when maybe he will better be able to use all his tools, when life and all that comes with being a kid/teen are just easier. I want so badly for life to be easier for him, or at least for him to be able to do it better, handle it better. I keep hearing if we can get him to that point, it will be easier. He will be more capable of processing, dealing, tolerating.

But can we get him to the other side? Ever since the first time he talked about ending his life, I can’t get past the fear we’re never going to get him there. Every time he gets in a dark place, I am terrified. What if it’s today? What if this thing is that last thing, the one thing that is just too much for him? I am fearful every day. It’s always there, even if I’m not specifically thinking about it, I can almost just feel this layer that won’t go away.

Can we get him to the other side? What is the likelihood? And what will it take to get him there? How many times do we have to go into emergency mode? How many phone calls will I get from school? We check in with his psychiatrist every six months. He has been and will be seeing a private therapist. We monitor medications and any changes that might need to be made. We make sure he knows how much we love him, how much our family needs him.  I’m always afraid it isn’t enough, and then sometimes I get angry when I worry it isn’t enough. Aren’t we enough for him to want to be here?

He is okay now. He’s come out of that place he was in a couple of weeks ago.  He’s smiling, laughing, engaged, content. His outbursts and meltdowns have gone back to normal level. His tears and depression have gone back to normal levels. But that level of fear in my heart remains.  Can we get him to the other side? What will it take to get him to the other side? Are we enough? Is what we’re doing enough? And will this fear ever go away?

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.