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.

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 Field Trip

Little Man’s class is going on a field trip tomorrow to the Science Museum. I am not going with him. This is making for all kinds of emails and texts flying around between his SAI, classroom teacher, and myself. You’d think we were preparing for something much bigger than a simple field trip. Only we know that with ASD kids, nothing “simple” is simple.

He LOVES the science museum. There’s lots of hands-on stuff, and the subject matter in the entire place is right up  his alley. We even went there for his birthday last year, at his particular request. I let his teacher and the SAI know that part wouldn’t be a problem.

Here’s the deal though – he hates the freakin bus. It’s usually pretty loud, and there’s generally a good amount of chaos. I get it – the kids are excited to be getting off campus, going somewhere interesting, doing something that isn’t part of the normal routine. He will normally do pretty well on the way there, but we’ve experienced meltdown more often than  not on the trip home.

I also asked his teacher to review the agenda for the day with him, and give him a written schedule. It really  helps lower his anxiety to know what’s going to happen when. The only backlash being he will expect everything to happen exactly when the schedule says it will happen. You and I know it doesn’t always work that way. So I asked her to remind him it’s not set in stone.

He will be taking his  headphones and snacks. They’re worried how he will do in the IMAX theater. He’s been in IMAX four or five times. It’s not usually a problem. I’m truly hoping that will be the case tomorrow.

You might ask why I’m not going with him. I could be going, but I chose not to. I have three events to prep for, and I kind of need him to get used to doing these things without me there as his crutch. I’ve written before about his co-dependence. I discussed with his SAI at the beginning of the year I would be begging off of most things for this very reason. She understood. It’s another form of therapy for him to have to get through field trips without me there.

I’m a bit anxious about this. But I’m holding that in. I don’t need him to know I have any concerns at all over how he’ll do. If he recognizes I’m anxious, that won’t help his anxiety levels one bit. We’ll both take a deep breath and hold on tight. Fingers crossed and prayers going up he flies like we know he can.

How would it be?

My best BFF sent me a text this morning, the gist of which was did I ever wonder what our family dynamic would be without autism. I responded that I occasionally do, but it isn’t often I let myself go there because it can be defeating.

How would we be? How and who would he be without autism? I don’t know I can even imagine. He is who he is, and autism is part of that. It’s always been part of us, who we are as a family, even before he was diagnosed. I can’t really picture what our lives would look like if he weren’t autistic. I don’t know I can imagine who he would be, not autistic.

Would he be involved in a sport or some other activity? Would he be constantly outside, playing with his friends? Would he be a better student but with lower grades and test scores?

Autism is part of his make-up. Does it completely suck sometimes? Totally. It is often really hard? Uh, yep. Do I sometimes completely break down, wish it were any other way but this way? Yes, if I’m completely honest, I do. There are days I curse autism and the wreckage it brings. There are days autism wins in our household. When your nine year old tells you he wants to end his life so as to end the pain, you hate autism.

Do I ever ask, “What if?” Certainly. I wouldn’t be human if I didn’t. I don’t know any autism mom that hasn’t asked that question, maybe even begged to know why her child.

When I do try to picture him without autism, I don’t even see him the way he looks. He would have to look different, in my mind. Does that make sense?

I do worry about the effects of autism on my other two children. As difficult as it is for me as Little Man’s momma, they too deal with the fallout. I know it’s really hard for them sometimes. I also know they are much more compassionate of others with different needs, more patient and understanding because they deal with special needs first hand. Who would they be if Little Man weren’t autistic? What would their relationships be with their brother if he weren’t autistic?

This is why I don’t often think about it, ask what it would be. It leads to so many more questions I can’t answer. Would I take it away if I could? I’ve answered that question before, and I’ll say it again….I love my amazing child, and all the incredible things about  him that autism does bring, but I hate having to watch him try to navigate this world, a world which is not designed to accommodate people like him. I hate how much it hurts him. I hate watching him struggle. So, yes, profoundly yes, I would take it away if I could. But I can’t take it away, and so we journey onward. We are an autism family.

The trouble with the non-routine routine

It’s expected. It happens every break we have.  It doesn’t ever surprise me. It does break me every single time.

Yesterday, the very first real day of Winter Break, Little Man lost it completely. His frustration mounted as an app on his phone wasn’t connecting to his computer the way it was supposed to. I tried to head the imminent breakdown off at the pass. I told him to walk away from his computer for a bit. He did, after my prodding a few times. The tears followed. He cried for a good half an hour. He seemed to settle. We talked about my response not being directed towards him, but towards the behavior. I don’t think he’s a bad person or a bad boy, but it’s my job to help him in the moment. He seemed to understand that. And he seemed okay when I told him I wanted him to be off screens the rest of the day. Ten minutes later, we entered phase two.

He had not one nice word for anyone. Everything that came out of his mouth after that was rude, angry, and mean. We corrected. We removed him from the situation. We sent him to his room when he wouldn’t stop. We used every tool in our toolbox. Nothing worked. Nada. Zip. He was in it completely. We had to ride it out with him, although we didn’t give up, wouldn’t let him just do whatever he wanted to do, yelling at everyone, and stomping around.

His anxiety is already ramping up.  He gets so excited for Christmas, but as with his birthday, Easter, the first and last days of school, super fun, really exciting things are a double-edged sword. He can’t wait for them to happen. That waiting brings his anxiety level up ten-thousand-fold, which results in meltdowns, major sleep disruptions, extreme highs, and extreme lows. It hurts to have little to do to help him through this.

I’ll spend the next three days managing him as best I can, trying to keep him busy and reassured, attempting to maintain as much routine as possible. And I will spend a lot of time just holding him, literally and figuratively, through the storm.

Heels, friends, and oh-my-god-really?

It’s rare you get a three-in-one post from me. I can’t remember the last time I had something to say about all three at the same time. They’re usually good about taking turns at being fodder.  Not so this week.

I took the Princess to the mall yesterday afternoon. This is the second year she’s gone shopping with her own money to buy gifts for her siblings, and me and Spouse too. She’s learned just how fun it is to watch someone open a gift you’ve chosen just for them.  She’s creating her own Christmas magic.  I had also promised her a few weeks back I would get her a certain pair of boots she’d been wanting. That was part of our excursion yesterday. I’d put it off as long as I could.  Wanna know why? The boots are wedges with a 2.5 inch heel. She’s already a smidge taller than I. With these boots on, she seriously looks down on me.  She put the boots on, and  looked instantly three years older. I’m so not ready for this.  She has these long legs, long arms, dancer’s body.  In short, it’s freaking me out. I’m not ready for her to be all grown up. But grow up she will.  She lit up when I told her we were buying them, and she wore them not only out of the store, but out to dinner.  I had to put my 3-inch heels on just to keep up, and be able to look her in the eye.  She has her first heels. Yikes.

Yesterday morning, Little Man asked to go to school early. This is new. Seriously. Usually he doesn’t want to be there any earlier than necessary. I’m pushing it getting him there fifteen minutes before class starts. So I was surprised when he asked to leave early. “Why?” I asked him, an obvious question.  “Because I want more time to play with my friends.” Hear that? Throughout most of elementary school, he had few friends, max of maybe three any given year.  That started to change last year.  Everyone was pleasantly surprised. Along with everything else he regressed on the beginning of this year, he started out with just a couple of kids he was comfortable with, would hang out with.  This seems to be changing. So, when he asked yesterday, I grabbed my keys, and took him to school twenty minutes early. I didn’t think the process would be repeated, but again this morning, he grabbed his stuff twenty minutes early and said, “Let’s go mom!” Away we went. He hopped out of the car with a smile on his face, walked up to his friends, and into the building, grinning all the way. My momma heart was so light.

As for the Oh-my-God-really thing…….Big Man is driving me insane.  I checked his grades day before yesterday. They have 6 school days left in the semester.  Finals are next week.  He’s so not even close to where we expect him to be. It’s so frustrating because we know what he’s capable of.  He blames it on daily cross country practice the first 2.5 months of school.  It wasn’t like he was getting home at midnight every night. He was done at 5pm, four  hours before his bedtime…..plenty of time to get homework done effectively and efficiently (they block classes so he only has all six classes one day, then three each day the rest of the week).  And we had that medication argument until just a couple of weeks ago too. He takes two ADHD meds…..the typical daily med, and then a non-narcotic at night to balance out mornings, evenings, anxiety, and sleep.  He has been fighting the non-narcotic for six months. Wait, have I said all this before? Suffice it to say, his focus was seriously lacking during the morning rush, and his daily med had worn off by the time he got to homework.  Hot. Mess. I’m feeling like this semester is just a loss.  So frustrating. He’s so capable. And forget trying to get through to him that it really matters now. He has to take school seriously if he expects to go to any kind of four-year university.

So there. That’s been my week so far. I’m going insane with them, and with trying to recover from Nutcracker as well as prepare for Christmas. There’s going to be lots of online shopping and wine between now and the end of the year.

Evaluations and Assessments

As I mentioned last week, it’s tri-annual year for Little Man’s IEP. That means evaluations and assessments across the board, with essentially every member of his team. Have I mentioned he really doesn’t like changes to his schedule and routine?  I had two phone calls today, one from the school psychologist, and one from the speech therapist. Both said he’s given some push-back. He doesn’t like being pulled out of class, particularly if it isn’t part of his regular schedule. They have figured out he is much more cooperative and willing if they get him first thing in the morning. He’ll go in for his last speech evaluation half an hour before school starts Thursday  morning.

I go back and forth on this. They want him at his best. I mostly do as well, but then I also want to make sure they’re getting a true picture of who he is and what he’s like at every point of the day.  Double-edged sword. I need them to see how awful it can be. But I also need him to be cooperative and engage so they can complete the evaluations and assessments.  It’s a conundrum.  We’re all working it out.

I finally pulled open the parent forms yesterday.  Two of them were pretty easy, although having to fill them out still sucks because they clearly point out his challenges and deficiencies.  But I can circle and fill in dots like a champ. The third form had me stumped as soon as I got past the question of who lives in the household and how old is each person, along with are his parents married or divorced/separated and have there been any traumas within the last year. I reached the Academics section and was immediately stumped. I had to put it away. How do you define your goals for your child’s education? I know how to answer that one for my neuro-typical kids…..do their best, graduate with grades good enough to move on to college. While we fully expect Little Man will go to college – he’s fully academically capable – his education involves so much more. And it seems his academic strengths have changed. I’m not sure I even know anymore.  What do I want for him? What concerns me? What helps him? What doesn’t help him? How do I define his social struggles within three lines, and my concerns for his social abilities in two lines?

His IEP meeting is November 30th. That’s not far away.  I’ve made it clear I don’t want to lose any portion of his services before his next tri-annual, which will be during his Freshman year of high school. Thus far, they’ve heard me. I am already dreading it though, that meeting. I try to keep emotion out of it, but I’m his mom…it hurts so much to have to sit there and discuss all the ways he needs help just to get through a school day, much less get the same education as his siblings and peers.  I hate having to talk about him saying this is too hard and he doesn’t want to do it anymore.

I haven’t finished the form with all the blank lines. It has to be back to them by next Wednesday. I think I’m going to have to do it in small increments, take my time. It’s a bit overwhelming as a whole.