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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IEP processed

Little Man’s annual IEP meeting was almost two weeks ago. It’s taken me a bit to process, mostly because I had other things going on…work, a trip to see my parents, Thanksgiving….I had to process it all anyways. I had to go back through the details, not in-the-moment.

Someone asked me about it, what happens, how did LM handle being in the meeting. I explained, “You spend the first five minutes hearing the ways your kid is amazing and how he’s improved. You spend the next hour discussing all his deficiencies, and making plans to help him.” Truth. That’s what goes on. You know what? I almost hate those first five minutes more than the rest of the meeting. Look, I know all the way he’s amazing. I have to make myself focus on those amazing qualities in the moments he’s completely falling apart, or pushing me over the edge, or having the mother of all meltdowns on the sideline of  his soccer game. He is amazing, brilliant, beautiful, witty, funny, empathetic, entertaining, cuddly, loving, and just….amazing. I’m his mom. I know this. I know they know his abilities, his strengths. It just always makes me feel like I’m holding my breath waiting for the “but…..”

So yes, he’s doing better with his collaborative work, although he still needs work. Yes, he’s very creative. Yes, he’s gotten better at communicating his needs. Yes, he has become a mentor to kids in younger grades working with the 3-D printer. His writing has improved. Can we please get to the hard stuff? The stuff we really need to talk about? The things we need to work out?

I knew he’d avoided going to class for some time when he was dealing with some bullying and then his perception of everyone around him – and their actions – went sideways. I didn’t realize he’d hardly been in class for nearly a month. His grades suffered accordingly – but WTH? Nearly a month not going to class? This is a small school with a small campus. There isn’t really anywhere for him to hide. I do know we dealt with the headaches and stomach-aches for over a week. I know he spent a good amount of time in the nurse’s office. But really, nearly a month hardly being in class, because he wouldn’t go. He ended up with two F’s, three C’s, and one A on his report card. My kids have NEVER gotten an F, much less two, on a progress report much less a report card.

The adaptive PE teacher on consult for him told us she’d have to hunt him down most days when it was time for PE. Again, WTH? They shouldn’t have to go look for my kid. He’s 13  years old.  He’s an 8th grader. The school is small, the campus is small, but you had to go look for him? Then he wouldn’t cooperate nor participate much of the time. So our PE goals remain intact. Get to PE, and participate to a percentage level.  He has a new sheet he has to fill out in which he earns points for showing up, participating in the activity, or running.

Most of his goals remain the same…..working cooperatively and successfully in groups, getting his work done, staying in the classroom, self-management, responding appropriately, stating verbally his feelings and needs, and showing up for and participating in PE.

I do feel like it is a team. We all want what’s best for him, and to best prepare him for high school and beyond. Then we had to start talking about the transition to high school. No, we haven’t decided where he’s going. We have narrowed it down to a few schools, one of which is very difficult to get into, one of which is lottery, and one of which is down the street.  The rep from the traditional school down the street was there towards the end. We had to talk about what potential issues he might face at that school.  PE is a big issue. I get massively twitchy when I think about it. I can’t picture him having to dress-out, in a locker room with a bunch of other, neurotypical 13 and 14 year old boys, can’t picture him participating, or possibly even showing up. I worry about him showing up for any class after the way this Fall has gone.  We won’t even discuss homework, or him staying in class, or him even looking like a typical student.  I just can’t.

I wasn’t entirely impressed with the HS rep. Her responses to some of our requests, and some of his particular issues, almost made it sound like she’d never had to manage or process a kid like mine. Didn’t give me much confidence. I know she won’t be directly involved in his day-to-day if he does go to that school.  We asked about preferential period selection for PE. She’d never heard of that before. We asked about supervision or a different changing location, or only changing his shirt rather than his entire outfit (he wears sweatpants most days anyways), and she responded as if no one had ever presented those options before.

Here’s the deal – he WILL get a full high school diploma. He’s capable. We will not settle for a certificate. That’s going to stand no matter where he goes to high school. Maybe that’s a lofty goal that is going to take a ton of work, a lot of meetings, and a billion emails and phone calls. Whatever it takes, it is going to happen.

So, back to the IEP meeting…..I left kind of numb. There was too much to think about, too much to process. There are many good things he’s done, many great ways he’s improved. There are many things he needs to work on. There are things to be concerned about. My stress over the high school selection, and how he does in high school is straight up through the roof.

One day at a time right? Be where we are, deal with where we are. What’s next will happen when it happens. How do I feel about this IEP meeting? Well, I’m good with the goals we set. I’m not sure how much success he will have achieving those goals within the next seven months, but that’s not really the point, right? The point is that they’re goals for him to work on, for us to help him work on, goals to help make him successful in school, in life. Good did come of it in that it led to good discussion, and Spouse was involved. We have had multiple discussions with Little Man.  He is mostly staying in class. We’re working on the rest. He’s a brilliant boy, with a brilliant mind. Someday, the world will be built for him, he will find his people, his corner of success in his way.

We have things to think about, more meetings down the road, particularly once we decide where he’s going to high school. For now, I’m going to take a deep breath, and be happy I don’t have to think about IEP’s for a little bit.

Almost forgot….How did Little Man do, participating in his own IEP for the first time? He didn’t want to go, and he did push back all the way up to the point of walking into the conference room. He didn’t say much, and we did have to tell him a few times to sit up, get his head off the table, but he was there. He didn’t yell, he didn’t complain, he didn’t growl.  He was there until we started talking with the high school rep and released him to go hang out with his friends at the lunch tables. He did it.

Dark Places

November is Prematurity Awareness Month. I’ve been participating in a 30-day photo challenge, with a list of photos from our NICU time….everything from photos of him with all his tubes, to his feedings, first outfits, and so on. It’s been something of an emotional haul, going back through his baby scrapbook and all the other photos we have from those 93 days. Most days these days, I can recall his early birth and NICU time without getting caught up in the horror of that time. I have a normal, healthy 17-year-old young man. I have much to be thankful for, and he miraculously came out the other side, so those bad memories can take a backseat for the most part.

Here’s the thing….once you’ve lived that, you’re changed forever. There are deep scars that remain. And once in awhile, something will happen…a song, a sound, a smell, a photo…will take me right back to that time. Once in a greater while, something will really get to me, and I go to those dark places I rarely allow myself to go. It’s like a punch to the gut, my breath catches, and my heart races with grief and fear.

Those dark places are pretty intense and painful.  I hate that I fully believed my son was already dead the minute I saw that toilet full of blood. I feel I’d lost faith in him, his life, his will to fight. It messes with my mind, brings up all the what-ifs, should haves, could haves, would haves.

I was away from him for five days following his birth. God those days haunt me. Logically, I know it was completely out of my control, and it could have been so much worse. There was one point, due to the need to properly treat the severity of my staph infection, the doctors discussed keeping me where I was for four weeks so they could monitor my recovery closely and administer the strong antibiotics I needed in a controlled environment. I can’t even imagine what that would have been like…four weeks locked up in that hospital, ten minutes away from my son’s hospital, unable to see him. As it was, five days nearly drove me insane. I wasn’t there for him. Spouse saw him, touched him, held him, knew how to find him in the NICU, knew his doctors, knew the routine, knew what our son’s face looked like. Spouse had to show me all of that when I did get out. I still feel guilt over that. Stupid guilt, yes, but guilt nonetheless.  I hate those five days. I hate how they make me feel when I let myself go to this particular dark place.

When I did get out of my hospital and went to his, they could have told me any boy in that NICU was mine and I would have believed them. I had only seen him for a few minutes before he was transported to his NICU. Most of his face was covered in tape. I hate knowing I wouldn’t have recognized my own child if  you’d lined up five boys in their isolettes in front of me.

I didn’t spend 93 days and nights in the NICU with  him. The world continued outside, and I was encouraged to take care of myself…..go home at night, get rest, do life as much as possible. I dreaded leaving him every evening. I hate that I left him to the care of doctors, nurses, and machines while I went home and did normal stuff….bought groceries, made meals, cleaned the house, fed the dogs and cats, watched tv, and slept. I hate that the world went on, that I participated in any “normal” while he lay there battling to live.

There was one point he was developing an infection of some sort. They needed to do a clean blood draw, and then transfuse him. I broke down and fell completely apart. He was maybe three weeks old. I’d only been in the NICU for a little over an hour that day, but I left. I couldn’t take it. I could see his tiny face, red with anger and hurt. I could hear his muted cry, and I couldn’t take it. I went home and just cried…I’d failed him again. I wasn’t there for him again.

See…..dark places. They, as much as anything else, are a part of premature birth. It is rare I let myself go to these dark places. They are my worst memories, my worst fears, my deepest pain from his prematurity. They shouldn’t matter anymore, shouldn’t affect me anymore, but they do……very rarely, but they do.

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.

When you take it all away

Little Man has been struggling of late….nothing new….it’s part of his journey, normal for him. As I’ve written recently, he’s been avoiding going to class, which results eventually in falling grades. With high school looming, we’ve had to incorporate some tough love into the routine. Teachers and the principal are on-hand to track him down if he doesn’t show up to class. We are notified if he misses a class.

At the beginning of the week, when we were alerted the extent of the problem, we took his phone and computer away. We took it all away. Caveat – he does have his phone at school. He listens to his music when he’s getting overwhelmed…I give him his phone as he gets out of the car to go on campus, and take his phone back as soon as he gets home.

The first couple of days sans devices, he was fine. He even seemed happier, less amped, less stressed, less reactionary.  I thought, “Hey, maybe this is actually a good thing for him.” Yesterday, he hit a wall. He was pacing. His breathing was elevated. I saw all the signs of high anxiety levels in him. He still has three more days after today without his phone and computer. Who  knows how that’s going to go.

He has had to be more creative. He created a paper character to make a stop-action film. He’s been drawing more. He still isn’t outside much. And he really wanted to talk with his friends last night (he typically texts or facetimes them every afternoon). He had something of a meltdown when he realized he wasn’t able to do that.

It pushes him when he doesn’t have his devices. That’s both good and bad. Those devices are his way to decompress, but then he becomes reliant upon them, to the point of tuning out the world. I think he needs to tune out the world for a little bit when he gets home from a 7-hour day of school where he has to be “on” and mentally/emotionally working the entire time. He is tapped out. But if allowed, he will ONLY be on his devices, watching YouTube videos and playing video games. It’s a very difficult fine line to find, much less stick to.

Wish us luck this weekend. It could either be great, or a complete nightmare.

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.