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.

This Boy

My dear, sweet, precious boy…..How can it be you will be seventeen years old tomorrow? I’d swear it was yesterday I heard your tiny cry for the first time. But here you are, taller than me, voice deepening, you’re driving, we’re talking college plans. You’ve grown up when I was busy being a mom.

You made me a mom first. I’ll never forget the first time I heard you, and knew you’d be a fighter. I won’t forget the first time I saw you, and it seemed impossible you were the same baby that had been inside of me just a few hours earlier. I won’t forget the first time I touched you, and you held on with all the strength in your tiny hand. I won’t forget the first time I held you, finally at peace, finally able to breath after five days of watching you through a 2-inch video camera screen. Was I scared? Oh yeah…I was terrified. I wasn’t ready. You certainly weren’t ready, but there you were. You taught me from day one things were going to happen on your terms and in your time. You’ve taught me more patience than I probably cared to ever have. You’ve taught me how it feels to live with my heart outside of my chest. You helped me learn to let things go, those little things that just don’t matter as much.

I love watching you, even still.  You walk into a room, and own it, whether you believe it or not. I love the way you connect with people.  I love watching people’s faces light up (especially your grandmothers, aunts, and great-aunts) when you give them one of your famous hugs. I love your quirkiness, your laugh, your spirit. I love that you’ve learned to battle your way through challenges, how to pick yourself back up and keep going. You will always be my first baby. You lead the way for your brother and sister.

I’ve walked those sixteen days over and over each year…..those days leading up to your birth. Your life is a gift. Your journey gave me a strength I didn’t know I had. You taught me how to be a fighter, even against the biggest odds.

Do you make me crazy sometimes? Uh, yep, ya do. Trust me, I thank God for even that.

Tomorrow is your birthday….seventeen. I don’t know why that seems to be a milestone, but it feels big to me. Big changes are coming, and you’re just on the verge of adulthood. I’m almost done the biggest part of my job as your mom. But know that no matter how old you get, or how tall you get, I will always see that little baby boy when I look at you. I love you. I’m proud of you. I’m honored and blessed to be your mom. Happy Birthday!

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).

In a year….

In just over a year, Big Man will be eighteen. That’s right – he will be an adult. Holy wow – how did that happen? He just keeps growing up. I knew this in the back of my mind, but then I really started thinking of what it will mean for him to be an adult.

First, he will still be in high school. Dang it – he’ll be able to sign  himself out if he wants. He’s a good kid, so I’m not super worried about this being available, but it’s there. It’s reality. He can sign himself off campus. He will be eighteen most of his senior year. I’m glad about that, and also terrified about that.

He won’t be able to go to his pediatrician anymore. She’s been his provider since he was just under two years old.  She knows him. She  knows his history. She knows his growth curve, his quirks, his diagnosis. I simply can’t fathom her not being his doctor. I can’t imagine having to explain his entire history to a new doctor. More than that, he will be able to go to the doctor on his own. The control freak in me is completely freaking out that. He won’t have to tell me ANYTHING about what the doctor says. I’ve played the primary role in all his medical stuff since day one. That will be near impossible to let go.

He will have to order and pick up his own medications. As an adult, he can refuse to refill them much less take them.

He will be able to enlist in the military. Yeah, that one I can’t even process.

He will have to fill out all his own paperwork. Hah! Good luck, son.

There are so many things he will have to do, be able to do as an adult that I haven’t even thought about. I’m beyond grateful he will still be at home his first year of adulthood. I feel I’ll have an opportunity to train him up before I send  him out into the world.  But it still freaks me out. In just over a year, my teeny, tiny, too-soon baby boy will be an adult.

He Wasn’t There

I went to a baseball game last night with some work associates – no kids, no spouse. This isn’t really something new – I’ve been to three games without my Herd this year. The difference last night was being at the Park here at home without my Herd. That’s never happened before. I had an amazing time, but it also felt a little weird.

Here’s the deal – when I’m at Petco Park, watching a game, I’m used to Little Man being there, and all the attendant stuff that comes with bringing an autistic child to a baseball game. When he’s there, we have his iPad or iPhone, ear buds,  and noise cancelling headphones. We make sure before we leave the house everything is charged up completely.  We feed him. We promise him snacks. We know at some point in the game, he’s likely going to need a break, which, as when we go see a movie in the theater, usually means a trip to the bathroom, a step away from all the stimulation near the field. It means we are paying attention to every pitch as he has a crazy fear of being hit by a foul ball, but not enough so he pays attention himself, his head buried in whatever technology he has, or whatever food he’s partaking. Some might ask why we bring him out into a situation we have to manage so much. There are so many reasons…..1) We selfishly refuse to let his autism keep our family from enjoying the activities we enjoy; 2) It’s kind of a form of therapy to put him in these situations; 3) He’s come an extremely long way since he was diagnosed, and we know we need to prepare him for the adult social world; 4) In his own way, he does enjoy it.

I don’t know about the ballparks where you live, but when the Padres hit a homerun at Petco, there are fireworks, fire/flames, loud music, lights flashing, and LOTS of cheering. Little Man HATES fireworks – hates the noise of them. He particularly hates the surprise of them – when they aren’t expected, as well as not knowing exactly when the “Boom!” is coming. The flashing lights freak him out. The over-the-top crowd noise after a homerun is overwhelming to him. Needless to say,  he really hates when the Padres hit a homerun. I’ve gotten used to needing to grab him and wrap him up, hands holding his headphones even tighter over his ears, trying my best to keep all the stimulation to a minimum, and give him that tight space that seems to comfort him. It’s a gut reaction anymore…homerun = immediate action on my part for him.

The Padres hit two home runs last night. Both times, I jerked, ready to take care of my Little Man as usual. I quickly remembered he wasn’t there, and took a breath, just enjoying the moment, being part of the celebration rather than trying to protect my child from something that was too much for him. I don’t ever, for one single second, regret taking him out to ballgames nor any other experience we help him through. But I do have to say, it was so nice to not have to have that knee-jerk reaction, to relax and have fun along with everyone else.

I’ve realized that being an autism mom is just part of who I am anymore. As his autism doesn’t define him, being an autism mom doesn’t define me, it’s just part of who I am. The  only difference is, sometimes I get to let go of that part of me. He will never have that opportunity. But I know he will learn to manage out in the world.

How we do baseball……

When the days line up

We have a whiteboard calendar above the desk in our kitchen.  I was super late getting around to updating it to August, so it was just two days ago I finally managed it. As we’re already well into August, I started with that day, and went into September. And then I wrote down  Big Man’s birthday, and it hit me…..the days line up this year. His birthday is on the same day of the week as his birth day.

I mentally count down the events leading up to his birth every year. That’s nothing new. The day I started bleeding and was admitted into the hospital, the day I found out I wasn’t going home until I reached 32 weeks or he was born (whichever came first), the day they discovered I’d lost 8 pounds in six days and the feeding frenzy began, the days I got my first, second, third, fourth, fifth, and sixth steroid shots to help his lungs develop early, the day I had the fetal fibronectin test and no one would tell me the results, and then the night I started running a very high fever courtesy of the severe staph infection which would result in his birth the next day at exactly 26 weeks gestation. I feel those days coming every year. I’m not as emotional as I used to be, but it still hits me. He’s come so very far…he’s perfectly healthy and “normal” in every way, but that doesn’t take away the toll his premature birth took.

There’s just something about the years the days line up exactly. It makes it that much more of a journey to navigate because it’s all the same as it was seventeen years ago. I started bleeding and was admitted on a Wednesday. I was told on Saturday I wasn’t going home. I was weighed on Monday and they found out I’d lost too much weight. It was on consecutive Thursdays and Fridays I received the steroid shots. It was a Friday when I had the fetal fibronectin test. I was a Friday when the fever started. It was a Saturday afternoon when he was born. I’ll relive that exact journey this year. It’s like a punch in the gut.

Don’t get me wrong – I feel incredibly blessed we came out the other side with the miraculous outcome we’ve had. He’s my amazing boy – my first born, nearly seventeen years old. But none of who he is or what he does nor how he is takes away the guilt, fear, pain, and sense of loss from his premature birth. NONE of it. I will always relive those days in my heart and mind, each and every year for the rest of my life.  And when the days line up with the year he was born, it makes it that much more difficult.

Well that was kind of weird

Today was the first day of school for the Herd. Honestly, it didn’t really feel like we had a real summer. I know everyone says it, but our summer really did fly by. We waited forever for this summer to arrive, and then eight short weeks later, it’s gone.

Today felt weird. Maybe that had something to do with me being gone until Monday. Maybe it was because our summer was abbreviated. But Little Man put my feelings into words when I was taking first day photos of him and Big Man. He said, “It will never be the same again.” Nope, it won’t. The Princess had left an hour before, her first day photo taken inside the house, rather than the traditional courtyard photo, because it was still dark outside when she left for cheer practice. After photos, Big Man drove himself to school. The only thing that was familiar was driving carpool to the middle school. Even that though is a bit different with the addition of some traffic lights due to new neighborhoods going in.

As soon as I had Little Man dropped off, I had to get myself pulled together and go to a work lunch. That threw my game off a bit too. For the last eleven years, I’ve generally spent the first day with my mom friends, or enjoying a quiet day at home after a run or walk. The other weird was not picking any of them up from school.

Things are changing. Big Man has his license. The Princess will have her license in a few months. They’re growing up, and too soon, they will fly off to their adult lives. I’m left feeling a bit off-kilter.

I know by the end of next week, we will have settled into the routine of the school year. I’ll have wrapped my brain around the fact they are back in school. It will be less weird than it feels today.

Not posting a pic of this year’s first day since Little Man was wearing his school shirt, and I’m not tech-savvy enough to blur it out with my photo editing software. But here’s a throwback first day photo for your enjoyment…..

First day of school 2011

The last first day all three were at RC