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?

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!

I’ve Forgotten How to do This

We pulled Little Man from organized sports about four years ago. He had zero interest anymore. It had become more of a battle than it was worth at the time. And then, quite honestly, I had begun to fear for his safety as his skill level in baseball and soccer had fallen so far behind that of his peers, and he was much smaller than most of his teammates. Add to that the fact we were beyond busy shuttling the other two to their various activities, and, well, we just let him stop playing.

Last week, the mom of one of his besties in the ‘hood sent me a text. C’s recreational soccer team was looking for players, and would Little Man possibly be interested. Uhhhhhhhhh……….lemme check. This is a rec team, yes, but it’s Under 14 boys (read: some of them have had their growth spurts and are TALL), and it’s a full soccer field, and LM is not the most athletic of children. He regularly balks at participating in PE at school, especially when it’s an organized game with the full class. He’d much prefer to run by himself, or just sit in front of his computer and skip it all together. But I said I’d ask him about it, and so I did. What do you know, he said yes! I made it clear it’s the full field type of soccer, he’d have to run, he’d have to participate, he’d have to listen to the coach, and he would be in it for the entire season – he can’t just quit when he thinks he’s done with it. He said he understood, and still wanted to do it.

Fast forward three hours – I’ve emailed the coach, sent his registration form into the registrar, popped a check into the mail, and added practices and games to our family calendar, all the time wondering what the heck we’d agreed to. We have played in this soccer club – we were part of it from the time Big Man was five, through his eighth grade year. We used to set up camp on those fields every Saturday. But it’s been a few years.

Little Man came home from that first practice with his uniform.  Spouse got him new cleats, shin guards, and a ball on the way to his first game Friday night. I realized as I looked a  his jersey, shorts, long green socks, shin guards, and cleats that I’ve forgotten how to do this. I’ve forgotten how to keep track of uniform parts. I’ve forgotten about post-game snacks. I’ve forgotten how to do hot Saturday afternoons and too-early, cold, rainy Saturday mornings at various soccer fields. I’ve forgotten how to be a soccer mom.

You might be asking if I warned let his coach know what he’s getting. Yes, I did give full-disclosure, after we signed on the dotted line. Here’s the deal – Little Man ASKED to play, agreed to play. We aren’t making him do it, as we did with all our kids when they were younger and hadn’t figured out their interests. Also, Little Man has come an extremely long way with regard to maturity level and confidence since the last time he played an organized sport. He’s on the team with one of his best friends. He understands what’s expected of him. Do I think we will get through the entire season without a meltdown? That’s a huge negatory. It will happen – I just hope it happens on our time, and not his coach’s time.

I wasn’t able to be there for his first game last Friday. We had to divide and conquer as the Princess was cheering her first football game of the season at the same time. I did get reports from Spouse. His words when I asked him how it was going: “Having fun. Enjoyable to watch. Their team sucks.” Little Man was having fun. Spouse was enjoying watching him run around. Catch that – he was having fun. Ahhhhhhhhh goes my autism-momma heart. He was having fun. And there you have it, my friends, there you have it. eye on the ball

The End

While I’ve talked about the frequent weight checks for Big Man, I haven’t really talked about all  he’s been going through the last few years, and part of the reason for all those weight checks.

It wasn’t something entirely unexpected, but it was frustrating nonetheless.  Back in late-seventh, and eighth grade, nearly all his friends started their growth spurts. While Big Man didn’t stop growing, he didn’t spurt. Suddenly, most of his friends were significantly taller, while he stayed much the same height. My brother grew late. Spouse grew late. So did my BIL apparently, so we weren’t too worried. But then he fell far off his own growth curve….like REALLY far off his own growth curve. It was enough his pediatrician called in the troops – ordered blood work, and started all the referrals to any specialist applicable. We’ve spent the last 2+ years getting follow-up testing, blood work, bone age scans, visiting endocrinology a few times.

What it came down to is the fact he is just constitutionally delayed – by a bit over 2 years. That means his body is two years behind his chronological age. That’s kind of a big deal for a fourteen/fifteen/sixteen year old. He took it in stride initially, but then when even the “small” kids in his friend group grew taller than he, the struggle began. He never said much about it, but I knew it was hard for him. It was miserable for me to see the difference, to see my little big boy walking around, significantly shorter than most of his peers. I prayed continually for him to grow. Like when  he was in the NICU, we began to celebrate every ounce gained, every part of an inch grown. We watched for any sign he was entering his spurt. Days, weeks, months passed, and nothing.

He’s nearly seventeen. He’s grown almost three inches since January 1st. I really have to look up to him now. His voice has changed. His face looks different – more adult, more defined. He sleeps constantly. He eats when he isn’t asleep. He’s shot up three lines on the growth curve. His ADHD doctor now says he can’t even guess how tall Big Man will be (just a year ago, he was telling me Big Man would maybe end up at 5’9″ or so).

I can’t express my level of relief – moreso for him than anything. I don’t have to see that look on his face anymore. He’s catching up to his friends. We saw his pediatrician last week and she was surprised, but not really surprised. We’ve reached the end of this particular medical journey. He is fully in his growth spurt. Whew. We do have one more visit with endocrinology in September, just to dot that final i and cross that final t.

I’m once again reminded of his NICU days…..in the beginning, in the middle, and even towards the end, it seemed we would never see the day he would come home. The last few years, it seemed we would never reach the end of this delay, we wondered he would ever grow. This child has always done things in his own time, on his own terms. This shouldn’t have been any surprise to me at all, yet it was. But now this too will be put behind us, and I will look up at my getting-taller-every-day big boy, and be thankful.

Finished

Finished – that word applies to so many things today. It’s been the word on my mind most the last few days. Finished. We are finished, we have finished, we will finish, we have yet to finish. Sigh….I’m in a funky place.

Big Man and P finished their school year Friday. P said she actually didn’t want the year to end. Wait, what? From my point of view, it’s been an exhausting, mentally and emotionally draining, dragged out, up-and-down/high-and-low year. I was not sad to see the door close on this one for them.

I am proud of Big Man – he pulled it together enough to have an almost-respectable GPA for the semester. It was a near-miracle, considering how deep a hole he’d dug himself. But he did it. We did have to push, and check in almost hourly to make sure he was doing what needed to be done, but he did it. Oh trust me, his final report card for the year wasn’t amazing, but it was nearly as ugly as it had been. For that, we say “Thank you Jesus!”, and heave a sigh of relief. Pray God he’s figured it out and we won’t have to face these same issues next  year.

After a long season of training (for me anyways  – Big Man didn’t really train at all), we ran the Rock-n-Roll Half Marathon yesterday morning. I was really worried about this one, as my training was cut short due to various injuries. My last 11-mile run was five weeks ago. My last run of any significant distance was three weeks ago. My last run was a week and a half before race day, and that just 4 miles. I spent 10 days gently stretching, icing, heating, and praying it would come together and I’d be able to push through. I had a 2-hour massage. I went to the chiropractor. I faithfully used my foam roller.

Race morning arrived. There was a LOT of frustration early – parking was an unmitigated disaster. It took us nearly an hour to get into the lot from the time we arrived downtown, then we had a mile walk to the shuttle busses. We got on our bus at the time we should have been arriving at our corral. We were in the bathroom line when our corral started, and ended up crossing the start with a corral 9 behind our assigned corral. I’d decided with my training partner to just push for the goal we’d trained for – a 2-hour finish. I knew 2 miles in I wasn’t going to be able to maintain that pace – the three weeks without any significant running had killed me. I slowed to my old half marathon pace and regrouped. Three miles later, my IT bands started tightening and my knees started to hurt. I pushed on, with short stretches of walking, until I hit mile 7 when I knew I’d have to just let go of this race. It became a matter of finishing, and nothing else. I walked when I needed to – which was quite a bit – and ran when I could. There was a downhill at 9.7 that almost did me in. But I pressed on. My training partner finished (I was getting texts for her and for Big Man) – I was at mile 10 I think. Then  Big Man finished. I was closing in on mile 11. I was frustrated, in pain, tired, and so disappointed. At mile 12, I started running again, determined to finish the race running. I knew there was nothing structurally wrong with my body – just IT bands that like to knot up and make it feel like there are knives going into the side of each knee – and so I pushed, and crossed the finish at 2:41 – my worst half marathon time ever, by 16 minutes. I headed to the medical tent and had my knees wrapped in ice.

My training partner had a PR, under 2 hours. Big Man didn’t meet his time from last year of 1:58, but he really didn’t train at all (oh to be 16!). He finished at 2:09. But we finished. The race is more about the culmination of training – a cap to a season. I’m trying to let it go, the disappointment of a bad race. Training had been going so well. I’m trying hard to focus on the fact I ran my 8th half marathon and not everyone gets to say that. I am so proud of Big Man – there were 114 boys on the course in his division. He finished 51st of those 114. That’s pretty awesome, isn’t it? Out of 30,000+ people running (between the full, half, and half-relay), only 114 15-17 year old boys were running, and one of them was my son. I love that I got to share yesterday with him. What’s really fun  is being able to talk about it with him, remembering miles and sections like a football player will remember a play, a golfer will remember each hole on a course, a pitcher what pitch got launched out of the ballpark by which hitter. I love that shared experience. I’m proud of the fact he fought when things started to hurt; he didn’t give in when the course got rough, when he knew he wasn’t going to match his time from last year, when he got tired and wanted to quit. He finished. We finished.

Eleven more school days for Little Man. Then we will be finished completely with this school year. He’s hanging in there. He has had some increased anxiety – it’s so typical of this time of year for him. We will fight through, and then breathe another sigh of relief. It is so weird to manage two out of school and one still in, especially for the significant amount of time 2.5 weeks is. We’re almost finished.

It’s his, but he doesn’t remember

I met with a  new local March of Dimes staff-person last week. As is typical, I shared why we volunteer, told our story – how we’re connected to the mission of the organization. She asked if Big Man does his own fundraising, tells his own story. Um, no. He walks, but when it comes to the talking, he leaves that to me. Why? Well…..it is his story,, but he doesn’t remember it, thank the good Lord. He knows my version of his story. He’s heard it a billion times. He did live it, but he has no memory of it. The baby in all the photos is him, but like any other baby, he has no memory of his early years, much less his too-early, dramatic entry into the world.

He does get why  his story matters. He does  understand prematurity was, is, and always will be part of who  he is, but all the emotions attached to his premature birth belong to others, not to him. Does that make sense? He lived it, but we lived the fear, guilt, pain of having failed him in any way. He was the feisty fighter who made it while we stood by, watching and praying. He did it, but we are the ones who remember.

He compared it to when people say I’m strong for having gone through all we’ve gone through.  My response always is, “You never know how strong you are until you have to BE strong.” He just lived – he doesn’t see anything amazing in that coming from him, but instead places the credit upon us, his nurses, his doctors. I say he had a strong will to survive right from the very beginning.

I keep encouraging him to own his story. I think he’s there now. He  had to write his own obituary in his psych class recently.  He did include his premature birth in his narrative. I was a little surprised by the inclusion. If you don’t know his story, you’d never guess his story. You can’t look at him and say, “Oh, yes, he was a preemie.” You can’t tell by looking at him, in other words. Well, I have to edit that a little bit – many preemie moms I know can tell by looking at a kid, but we know what to look for as we see it in our own preemies. The general population can’t look at him and know, without being told, he was born 3.5 months too soon.

I’m thankful he doesn’t remember at all, this story of his. I’ve always said I remember enough for both of us. But I’m glad he’s owning it, making it his, because it is his, even if he doesn’t remember one second of it.