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:

P5

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.

P14

 

Is it fair?

I was talking with a friend the other day about where Little Man will go to high school and how it might be if he goes to the same high school his siblings attend. I have a huge hangup over putting responsibility on them to take care of him and look out for him. They’ve had five and six years of being at a different school, without him impacting their school days, who they are at school. They didn’t ask for a special needs sibling. And I just get scared of putting too much on them where he’s concerned. But my friend said, “He’s their brother. It isn’t too much, it just is.” And then we both started to cry.

They’ve had freedom for a while…freedom from being the autistic kid’s sibling while at school. How will it affect them to have him on the same campus, especially when  he goes sideways (because he will), or decides to hide rather than go to class, or he starts crying in class, or runs out of class, or gets bullied? I won’t be there to buffer nor to manage him.

I don’t even know if this makes any sense, my fears and concerns. On the one hand, I would be so relieved to know he has people who know him and love him there on campus helping to keep an eye out. But on the other hand, ugh, the responsibility. They’re teenagers. They have enough on their plates without having to help him through each day at school. Would it kill their social mojo? Distract from their own priorities?

He has been around some of their friends. Most seem to take him in stride, but he can sometimes be a lot. He’s been fairly manic lately, swinging in seconds from really up, to really pissed off or sad. He’s loud. He’s  intent upon talking about what he wants to talk about. He still struggles with social cues. He wants to be part of things, but he doesn’t always know how to do that, and then sometimes being part of what’s going on is overwhelming to him no matter how much he wants it. Sometimes he is just the annoying little brother, which is normal, but which is also a little bit more difficult for him to understand.

I do, since Saturday, keep going back to what my friend said, “He’s their brother. It isn’t asking too much. It just is.” Sigh….would that this were all easier, and I didn’t have to even have much less process these worries.

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.

 

It’s Time for More…

I remember the very first time I was volunteering in Big Man’s kindergarten class and they had a lockdown drill. I held it together because, hello, surrounded by 5 year olds, and I didn’t want to make a bad impression upon his teachers, but I got home and fell apart. My little boy was practicing what to do if someone came on campus and started shooting. For all that’s holy, 5 year olds shouldn’t have to know that stuff. But it was part of the routine….they did fire drills, earthquake drills, and lockdown drills. It was, and is, just normal routine for them. That broke my heart then, and it breaks my heart now.

I remember duck-and-cover drills when I was in elementary school. Growing up near the California coast in the midst of the Cold War, and with Vietnam still fresh in everyone’s minds, we were prepared for air raids, along with the usual fire and earthquake drills. I’m sure my parents were a bit freaked their little children were having to learn that stuff. I’ve never asked them. It was just part of life.

We got a call from the district last night….our high schoolers will begin new drills and training – training to run, hide, or fight. I teared up as I listened to that call. My God, what have we allowed happen in our country that our kids have to know how to handle a shooter with a semi-automatic weapon? WTF??!!! That, combined with the massacre in Texas yesterday, plus the Vegas shooting, plus Orlando, plus Aurora, plus Sandy Hook, plus VT…..what does it take? When is it enough to finally enact sensible gun reform? It’s time for more than thoughts and prayers for the families of those slain (not that I’m disdaining anyone’s thoughts or prayers – Lord knows those families need them).

We’re supposed to make the world a better place for our children, give them better lives than we’ve had, right? I don’t feel like that’s happening. As I child I learned what to do if a foreign invader attacked. Our children have had to learn what to do when a fellow citizen decides to take innocent lives. Sorry, but that’s just f’d up.

I get the Second Amendment. Everyone’s guns don’t need to be taken away. But let’s just use a little bit of logic. On the no-fly list? No guns for you. Mental illness (and please remember, I have a child on the spectrum which equates to mental disability)? No guns for you. Been convicted of a felony? No guns for you. Basic, common sense, yes? And why the heck does any private citizen need an attachment for a gun that essentially makes it an automatic weapon, for all intents and purposes? Can we at least admit that much?

Kids should be allowed to remain innocent for as long as possible, and not have to think about a bad guy showing up at their school, their mall, their movie theater, their ballpark, their church to do serious harm. My goodness – we limit what they watch and listen to when they’re children, but yet allow them to be exposed to this possibility?

I’m sure I’m asking for it by writing all of this. But I am so freakin tired of sending thoughts and prayers to the families and friends of those lost to the insanity of a mass-shooting, knowing that even their loss won’t change a damn thing as far as guns are concerned. It’s time for more.

What made us ask?

The Princess asked awhile back what made us start having Little Man evaluated for autism. It’s all so ingrained in my mind….the horrific summer we had between his first and second grade years….the micro-managing, the meltdowns, the worry that maybe I just wasn’t being a good parent to him/not hard enough. I remember being SO offended when my sister, who is a para, suggested we have him evaluated.

That summer was so miserable. I was exhausted trying to keep him from falling apart and/or lashing out every  minute of every day. We knew to do countdowns before we left for anywhere or changed activities. We knew he didn’t like unexpected loud noises. We knew certain things kept him comforted. But I lived from minute-to-minute, never knowing what disaster would come next. By the time school started, we knew we were dealing with ADHD at the very least. I was in denial about anything else. At his parent/teacher conference six weeks into the school year, I asked his teacher what she thought. She legally couldn’t really say anything, but when I said we were considering having him evaluated, she just nodded her head and said she thought that was a good plan of action. We’d known her for a few years already – I was comfortable enough with her to be honest about my fears and concerns. She’d had enough time to get to know him in the classroom setting. We all knew something wasn’t quite the same as other kids for my Little.

When my sister made the suggestion, I immediately texted my BFF – who happens to have a daughter on the spectrum. She’d spent some time with Little Man over the years of our friendship, and knew the summer we’d experienced. She said to me, “You know, she might be right.” I had an A-Ha moment of epic proportions. Appointment with the pediatrician scheduled the next day, which earned us ADHD eval paperwork and a referral to a child psych specializing in ASD. Within a month,  we knew he was ADHD, hyper type, and autistic.

I cried the day we got his official diagnosis. In so many ways, it felt like a life-sentence. I didn’t know what to do, how we would manage, what life would look like now. Then another friend with a son on the spectrum reminded me that Little Man was still Little Man. A diagnosis hadn’t changed him from one day to the next. That diagnosis would just get him the help he needed, and it helped describe him, but it did not define him, nor us as a family. It is part of who he is, who we are, but it is not all.

There have been some pretty dark days since Diagnosis Day six years ago. Some of those days have left us scarred. And autism does not go away, ever. What started us down that road? Well, it was just a realization that he wasn’t just an immature youngest child who was behaviorally challenging to us…..a realization there was something more, something deeper, and that we all needed help.  It was the complete understanding there was something different about him, that we weren’t just horrible parents and he wasn’t just a horrible, misbehaving child. That “more” was the impetus. And so, here we are, six years later…..he’s still autistic, but he’s still my Little Man. Nothing about that has changed.

On Notice

My dear, sweet family….I love you all like crazy. I love being a mostly-stay-at-home mom. I love doing things to make your lives easier, and getting the things I know you like. BUT,  you are hereby all on notice of the following (frustrated momma rant comin right up):

  • I do not sit around all day waiting for one or more of you to call or text me, asking me to bring you something, get you something, do something for you. I am generally pretty busy all day.
  • If you need something for an assignment, class, project, meal, or sports team, I need a little bit more than 24 hours to get that handled for you.
  • I do have a job. Sometimes, I will not be home, won’t be able to answer my phone, won’t see your text until I’m done working.
  • CLEAN  UP AFTER YOURSELVES!!!!!!! The floor, kitchen counter, family room, and stairs are not your personal dumping grounds. Put your shoes in your bins or in your rooms, put your dirty uniforms and socks in the laundry room, put your books on your desks, your papers in your backpacks or desk files or your stack, put your towels in the laundry or in the buckets by the pool, throw away your food trash, put the milk back in the fridge, don’t get a new cup every single time, don’t leave your dirty cups all over the counter, put your snacks back in the pantry, put your dishes in the dishwasher. You are all FULLY CAPABLE of these simple tasks, trust me.
  • I really hate to nag, but I will nag if I must to get you to clean up after yourselves and do your chores. But please don’t make me nag. It makes me unhappy. Ever heard the phrase “happy wife, happy life?” Same goes with happy mom.
  • If you notice we are running out of something, or have run out of something, don’t wait until just after I’ve gone to the store to tell me. Write it on a sticky and put it on my computer, or put it on the whiteboard. Although the grocery store employees get concerned if they don’t see me at least a few times a week, they also start to look at me like I’m crazy if I’m there every single day. Boys, if you run out of shampoo or soap, please tell me….don’t just keep showering without washing your hair or bodies (yes, this has been known to happen).
  • Because I work, I’m sometimes not home in the evening. It doesn’t happen often, but it does happen. When it happens, please do not text me asking me what’s for dinner. Kids, this particularly applies if dad is home. But you’re all capable of opening the fridge/pantry and finding something to eat. I know all of you can cook to one extent or another. Part of me having a job is you all working it out when I’m not here. You can do it! Oh, and just make sure you clean up whatever mess you make – that’s part of the deal. If I have to work AND clean up your mess when I get home, I’m going to be a wee bit cranky (read: there might be some heavy sighing and cabinet slamming).
  • There’s a calendar on the wall for a reason. Almost everything is on there. Look at it, remember it, tell me if something changes, or you need something added.
  • I do the best I can, but I do sometimes forget something you’ve told me. I might ask a couple, or even a few times, especially if it’s a busy work week. Please be patient with me. I’m so not perfect, but it really isn’t fun to be reminded I’ve failed. Put a sticky on my computer. Or text me. Or email me.
  • Don’t take, use, or eat anyone else’s stuff without asking. And when you’re done with it, put it back (except for food you’ve eaten – we don’t need to see that again). Candy, charging cables, and headphones are not fair game.
  • I am NOT in charge of knowing where ALL of your stuff is. You can ask me if I’ve seen it, but it’s not my responsibility to keep track of everyone’s stuff. I have enough trouble keeping track of my stuff.
  • Looking for something means actually looking for something which means moving things around in the fridge/pantry,  and actually walking into a room to search

Whew…okay…I think my rant is done. Any of you moms out there ever gone on strike? I’ve considered it a few times, but I’m more worried my need for order would override my need to teach my family a blessing (lesson).

“Empties”

I started watching the Netflix series, “Atypical” last week. If you haven’t seen it yet, check it out. It’s really good. It’s about a family with two teens, one of whom is high-functioning autistic. Sounds dark, but it gives a great perspective on the reality of life with a high-functioning ASD kid.  It is actually funny, while at the same time, it can be gut-wrenching, particularly as the mom of a high-functioning, ASD teen. It gives me hope for his future as well as makes me aware how long and difficult his struggles will be.

Episode 5 about killed me the other day.  I had to stop it at one point – the neuro-typical daughter was talking about what life was like as the sister to an autistic person. She explained that when she was younger, she would hear her mom talking about her as her “NT” kid (neuro-typical)….She thought her mom was calling her an “Empty” and it made sense to her, because she felt she had to empty herself out in order to make space in their life for her autistic brother, the brother who took up so much space in their family.  I immediately started crying.

Little Man was diagnosed relatively late, at eight years old, but I still feel his diagnosis and subsequent therapies, etc took over our lives to a certain extent. We didn’t stop living, didn’t stop activities for the other two, but Little Man’s autism consumed me, especially emotionally.  One of my biggest fears has been how his autism affects them, what it does to them, how they feel about it.

Big Man and the Princess have not been at the same school with Little Man for years. It’s been five years for Big Man, and four for P since they shared a campus with him. That may change next year, as one of the options on the table for high school for Little Man is their school…..the public, traditional high school just down the street.  We’ve talked extensively about the possibility of him going there…..the worries of him being able to navigate the campus, deal with the number of students, handle the homework load, much less the possibility of being bullied, his differences so obvious. They’ve said they would help him, that they and their friends would look out for him. But what level of that is appropriate to expect of them? At what point do they feel they have to become “empties” so that he might be safe and successful? What is too much to expect?

We may not have to face this issue to the extent I worry about it. Time and his needs may find him at a different school entirely. They are still, however, his siblings. The day-to-day reality of that still weighs heavy on my mind. At what point do they feel they have to become “empties”? I hope I never intentionally lay that expectation on them.