This Familiar Place

We’re almost two months into this school year. For the past week or so, I’ve noticed some regression in Little Man…..more tears, more outbursts, a couple of full-blown meltdowns. His anxiety level is up.  He’s pushing back more. Then we have that situation I wrote about last week. He’s not really interested in going back to that particular class. Friday and yesterday, he spent significant time in the nurse’s office complaining of a bad headache. Friday, I ended up bringing him home. Yesterday, I took him ibuprofen at 9:30, but then got another call two hours later to come get him.

He’s fine. No other physical complaints, just the headache that only appears at school.

Here’s what I think, having done this school thing with him a few times before. I think he’s maxed out. Does that make sense? He just reaches a certain capacity to tolerate it all, and then hits a wall. We typically see this happen six weeks or so into the school year. It doesn’t even take me a few days or weeks to catch on to what’s happening. I just  know, as soon as we see this regression start it’s because he’s tapped.

I can’t pull him out of school just because he’s reached a wall. I can’t let him skip doing his work just because he has little left in  his tolerance tank.  I can’t let him just escape. I do give him a little space where I can, but we can’t allow him to retreat completely.

It’s so painful to watch him struggle. It hurts my heart. The world isn’t always kind to everyone, much less those with different needs. Every time he goes sideways, I mentally go back to that night he told us this was too hard and he didn’t want to do life anymore. I’m terrified….that is my biggest fear for him, always. Once your child says those words to you, you will never get over it. It’s always there in the back of your mind. But then there’s a fine line between acknowledging that’s there, and pushing him through situations because that’s what he has to do.

We are where we are. We’ve been here before. It’s a familiar place. Even knowing it’s probably coming doesn’t make it any easier once you notice you’re there. But we dig in, we love him through it, we keep fighting. That’s just what we do.

“They were laughing at me”

We have reached the time of school year Little Man has kind of reached maximum capacity and goes a little off the rails. He’s had a rough week. He’s had nightmares, trouble sleeping, and just less ability to use his tools.

His SAI emailed me yesterday. Something happened in science class. He had an outburst, and then didn’t want to go to class yesterday. I asked him about it….First, he said he didn’t really want to talk about it, but then I reminded him I couldn’t help him, Mrs. E couldn’t help him, if he couldn’t tell me what happened.  It seems he’d asked a kid to leave him alone – I don’t know his tone nor his exact words, but he asked, and the kid didn’t comply. In Little Man’s words, he started to “freak out” and then the kids started laughing at him, which only made the problem worse.

I hate this for him. Teenagers can be cruel. But also, as I explained to him, some people just don’t know how to respond to expressions of emotion, and so they laugh. I’m not mad at those kids….not really. They’re just being normal teens. But my heart hurts for my boy. He’s still working on so many things. And no matter what his chronological age, his emotional and social age is so far behind, and it’s patently obvious.

I’m not asking the teachers nor his SAI to micro-manage every minute to make sure he never has to face this situation. I need him to learn the tools to respond better. Does that make sense? Although I don’t blame him either. It’s a much bigger, much longer learning curve for him. Does it break my heart he’s hurting? Oh my gosh, YES. I’d change all of this in  a heartbeat to protect him from hurt.

He’s cognizant of the fact he’s somewhat different. He’s aware of his deficits. We constantly remind him his advantages and amazing he is.

I don’t know where I’m going with this. I’ve been sitting here, tears rolling down my face as I try to write this. I guess there are just days I really hate his life is harder. There are days I want to curse down autism. There are days I want to put on my Super Mom cape and protect him from everything and everyone. Days like this make me more afraid what he will face in the big world of high school, where his differences may be even more evident, more apparent, and make him more of a target. I guess what I’m saying is my autism momma heart is a little bruised today, and I’m praying for a better day for my Little Man.

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.

He didn’t look that different

On Saturday morning, I got to see Little Man play soccer for the first time in four years (if not more).  I was a little nervous. He is on an Under 14 team – I could only think of what Big Man’s U14 team looked like a few years ago – big, fast, skilled. I worried how he would manage, if he would be able to keep up, the potential for him to get hurt, how he would act with me there.

It’s been awhile since we were soccer parents. I had to write myself a note just to remember to take the chairs to the fields.  The soccer complex still looks much the same, with even many of the same people roaming around. It was surreal to be back, as I was convinced our years as a soccer family were done when Big Man finished his last game three years ago.  We took our seats on the sideline after chatting with some fellow teammates’ parents. Spouse is helping coach (totally in his element!) so he paced the sideline in front of us. The whistle blew, and the game started.

Our team got destroyed. We are a rec team, yet we played a comp team, which was evident pretty much right out of the gate.  We had one sub the entire game. Our boys were gassed early.  I lost track of all the goals the other team scored. We didn’t score one, although we did have a few shots on.

You know what I noticed more than anything else? Little Man didn’t look much different than his teammates. As in, if you didn’t know he was autistic, you’d never have guessed. He ran, he made a few passes, he moved around the field like he kinda knew what he was doing. He didn’t get taken out by another player. He could totally keep up. He did ask a bit more than his teammates to be taken out, but he played most of the game, and it was warm out there. He wasn’t a rock star, but neither was he just a body out on the field.

I can’t explain the level of relief I felt. He looked like everyone else. He played soccer! He did it.

I have to share this photo of him from in-game. Do you see the smile on his face? Good golly but seeing that did my heart so good. IMG_2030

What this day means

It’s been seventeen years since that day, and no matter how far we’ve come, this day is a sucker-punch every single year.

The minute we found out we were pregnant with Big Man, after more than 18 months of trying, a year of fertility treatments, and one early miscarriage, I started dreaming and imagining. I knew exactly how it would go…..I never thought anything would go wrong. That just wasn’t even on my radar, not for one second.  I firmly believed once we were past the first trimester, we were in the clear and it would be smooth sailing from there until the day my newborn was laid upon my chest.

That moment, on September 6, 2000, when I looked down into a toilet full of blood, my dreams were shattered….dreams of a picture-perfect, full-term pregnancy and birth. Those dreams were gone forever, replaced by fear, guilt, the possibility of death for my child as well as myself…..reality became steroid shots to help my baby’s lungs develop sooner than later, multiple ultrasounds, strict hospital bedrest, being away from home for who knew how long, and the lovely effects of magnesium sulfate. Reality became long, lonely hours in a hospital room. Reality became odds and percentages. Reality became praying every day for one more day. Reality became the knowledge that our baby was likely going to come too soon, too small. Reality became knowing I would never, ever take pregnancy for granted again…not for myself, nor for anyone else.

My son is here, seventeen years later. It was a battle, but he’s here. And prematurity does not end when you leave the NICU. His physical scars are minimal. My emotional scars are forever. I know exactly the fight my brave boy has inside of him because I watched him fight every single day. I know just how stubborn  he is, because it’s been his timeline from day one for every single milestone.  I know how tender-hearted and caring he is because I see the hugs he gives everyone, how he connects and relates to people. I truly believe that comes from him being handled by so many caring, loving nurses for three months. I know his eyes don’t close all the way when he sleeps, and I know he holds his hands in loose fists, with his thumb out, because I spent 93 days watching him intently, especially as he slept.  I know the long, narrow shape of his head is due to him laying on one side or the other in his isolette and then crib for months on end (and is a common look for preemies who do extended NICU time). I know more medical terms than most lay-people, because we lived in the medical world for a long time.

September 6th, especially when it falls on a Wednesday, will always be a pitfall for me. It will always bring back the worst of the memories. It marks the beginning of a journey……

The Year of the Choice

I remember this point three years ago, when Little Man had just started his last year of elementary school. I remember the anxiety I was beginning to feel, knowing we would have to make the decision during that year where he was going to go to middle school. He was in a pretty good place that year, but I was terrified of what was coming, terrified of messing up and making the wrong decision, terrified of the new big bad world he would be facing and its potential for total disaster.

Sixth grade was BRUTAL. We knew it would be, no matter where he ended up. The magnitude of change moving to middle school guaranteed stress, anxiety, meltdown, regression.  I don’t doubt the decision we made as far as where he goes to middle school – it is the perfect place for him. We’ve watched him thrive in the last year, and feel confident he will continue on that path this year. That’s not to say he’s without issues.  He’s been pushing back on doing his work, and on doing his work to his full ability (he’s a brilliant boy).  He’s gotten a little lax, a little lazy.  And, I’m not gonna lie, he sometimes uses his ability to manipulate to get out of things, or delay. So we’ve brought the hammer, because we know we have to prepare him for high school and the expectations that come with that level of education.

I’m trying desperately to stay in this moment, to just relax and enjoy the good place he’s in. But I can’t help the thought from hovering…..we will have to make a choice at some point this year where he will be going for high school. Thinking about any of the options brings a rise in anxiety level for me.  The school the older two go to is huge, and it is traditional….moving classes, big campus, PE for Freshmen, homework loads, etc. I fear the potential for bullying is too big. I get palpitations thinking about him going from class to class, much less making it through every class every day (they block, so Tuesday – Friday, classes are 90-ish minutes long). I panic when I think about him even knowing what his homework is, much less getting it done. And don’t get me started on PE – that’s been the bane of his existence since first grade.

The PBL/math and science high school would be a good fit, but it’s different. He wouldn’t be with his siblings.  And its location requires navigating morning rush-hour traffic in addition to the usual drop-off/pick-up mess. Yes, that one is on me – it’s SUPER inconvenient. Then there are the other options – Classical, Charter, home school (which, quite honestly, isn’t really on the table at all). So. Many. Choices. So much pressure and anxiety.

He goes back and forth between wanting to go to the math & science school, and going to the school down the street with his brother and sister. His class will do high school visits around town in October or November. We have his IEP in November, and a representative from his “home school” will be there.

I feel like I need to meet the special ed teams at each school on the table. I need to know we can work together, that they will have his best interests at heart, that they will protect him, that they will help us get him to the goal of a full diploma with as few disasters along the way as possible.  We  need a school he will keep receiving the services he needs, and that will accommodate him in his particular form of special.

See, this is where I spiral. I’m really trying to focus on the fact he’s in a good place right now, and not stress about what’s coming next year. At the same time, I know how quickly time passes, and that we will need to start these discussions with his teams sooner than later. We basically have about two months to live in the now. Then, we will have to face the year of the choice head-on.

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