You can’t leave home without it

My bestie and her kids were here for a visit a couple of weeks ago. One of her daughters truly speaks Little Man’s language. They live on the same autism planet. They get each other, which is awesome. It also means we spread all kinds of autism awareness when we’re all out together.

We were out at lunch one day. The two of them sat at one end of the table, lost in their own combined world. BFF and I maneuvered them through food and drink choices, ordering, keeping them calm at the table, and getting through the meal. At one point, BFF looked at me and said, “There’s no vacation from it.” Yep, there’s no vacation from autism.

These babies of ours take it with them every day, all day. When we go out, when we shop, when we vacation, when we sit around the pool, when we go anywhere, autism comes with us. We can’t leave home without it. We can’t take a day off. We can’t simply forget to put it in the suitcase like that bottle of sunscreen that was left behind. Some days, some hours, that sucks more than others. Some moments, it’s perfectly fine.

We had highs and lows over the course of the week. It comes with the territory. I think my favorite part was their simple excitement of seeing each other, talking about their shared interests, and when he pulled out his sketch pad and pencils after she brought hers to the kitchen table. I feel blessed to watch them together, their particular bond.

We took them to a baseball game their last night here. They both rocked it, their way, which was completely fine. iPads, headphones, and phones in hand, they were fairly oblivious to the game, but they were there with the rest of us. Baseball the autism way.

We can’t leave home without autism, but we can see something people who don’t live it can’t see…we can see the purity of their wins, their strengths, their particular abilities.

Summer Camp

When the kids were little, we started putting them in summer day camps – typically at the Y, and mostly to keep them occupied, surrounded by other kids, learning to learn from other adults, and, to be quite honest, to give me a few hours of respite from three toddlers. As the years went on, summer camp became tied up in whatever sport they were involved in at the time….soccer, golf, dance……Last year, Big Man went away to Mammoth for a few days with the cross country team to train at altitude. Two years ago, the Princess spent two weeks in Orange County at a summer dance intensive.

We’ve had a much more difficult time with Little Man as far as summer camps go.  He did the Y one year I think.  Once he was diagnosed on the spectrum, I struggled with putting him anywhere. We had a disaster of a Lego robotics camp a few years back. I ended up pulling him out a couple days before the week was out. The instructors just didn’t have it in them to deal. I lost patience, and a bit of faith.

Last year, we found an amazing camp nearby. Well, one of my close friends found it online and sent me the link. Right away, it sounded perfect for our guy.  It’s was a coding camp…five days, six hours a day, of working with technology, generally through gaming. I won’t say he had a perfect experience – autism did still rear its ugly head a few times. But the director and instructors were willing to work with him. Not to mention, he wasn’t the sole high-functioning kiddo there. We were super impressed. Much more, he made one  very good friend he still keeps in touch with.

I started getting emails for this summer back in January. Originally, they weren’t going to have any sessions at the college nearby (a ten minute drive), but rather down in San Diego (45-60 minutes each way, depending upon traffic). I didn’t think we were going to be able to manage the logistics.  But then a few months ago, they did open sessions at the nearby campus and we signed him up right away.

This is the week of camp. He was anxious but excited yesterday morning.  He was talking about the programs he thought they might be using, really looking forward to learning.  But when I picked him up, the director said he’d had a bit of a rough afternoon. It is a LONG day – 8 hours to be exact. That’s a lot for him. Little Man wouldn’t even talk about what he’d done all day until a few hours after he got home. I do think he ran out of fuel, and lost the ability then to self-manage.  He was happy to go back today, waking at 6:30, and announcing, “Day 2!”.

I texted the director a bit ago, just giving him some hints and tips for dealing with Little Man. He responded right away, letting me know things were going well today, and that he was appreciative of the input.  Again, I’m sure our son isn’t the only spectrum kid they’re dealing with. He can’t be. But if you know one kid with autism, you know one kid with autism. They’re just as different from each other as anyone else.

I’m not picking him up today, as I have a work event, but I’m still anxious to hear how his day went. He is doing something he loves, so hopefully that keeps the issues to a minimum. And on Friday, we’ll get to meet his instructors and classmates, and see what he’s been doing all week.

Once Again

I’m once again faced with the situation of Little Man having  new friend – one who has invited him over to hang out, and to go to the zoo at some point this summer. He went to this friend’s house for a birthday party yesterday, and even over an extended afternoon, seemed fine. But I find myself faced with the dilemma/decision/choice of telling this friend’s mom about Little Man’s autism.

Maybe she knows, or at least senses something. She didn’t say anything yesterday when I picked him up, but she has to wonder why a 13 year old chooses to hang out with a 10 year old. She said my guy waits for her son by the gate at school each morning too, and I know they spend hours facetiming, talking all things video game.

I haven’t had to struggle with this issue in a few years. What do I tell the parent of a new friend, when do I tell that parent? What’s best? What’s right for all involved?

If you didn’t know he’s autistic, you may just guess he’s either a lot younger than his chronological age, or just very immature, unless you have the pure pleasure of seeing him in meltdown or tantrum mode. Then you know for sure something is different. I don’t even know if his friend realizes he’s autistic.

I think part of me just wants him to be able to engage with friends without having Autism hanging over his head, part of me wants his life experience to be “normal” and me not have to consider this decision. But then am I being fair to that parent by not giving them fair warning, especially when they are going to be in charge of my child for a few hours? Sigh…….

What would you want to know about your child’s new friend, and when would you want to know it?

It Just Seems to Happen

I was talking with my sister (mom of two girls, age 19 and 17) last night about our beautiful teenage daughters, and our own high school/teenage years. I’ve not hidden the fact my beauty has been going through it in recent months. My sister and I compared our high school, and pre-high school, experiences, which were very different as far as friendships were concerned. Even though we had those different experiences – I had a bff from 7th grade all the way through high school, while my sister did not, but rather bounced each year from group to group, never quite finding her tribe – we both suffered massively from horribly low self-esteem and very poor self-image. We both had issues with food. We both struggled severely with our own sense of worth and value.  Now I know the source we both point to, but I found it interesting that even with those different friend experiences from an early age, we both ended up in the same insecure boat.

When I found out I was going to have a baby girl, I was immediately determined she would never, ever for one minute question her worth, her value, how much she’s loved. I didn’t want her to ever suffer insecurity, self-doubt, or unhealthy self-esteem/self-image. I for sure never wanted her to deal with an eating/exercise disorder, or any of a host of  stress-induced illnesses. I’ve tried to tell her every day (sometimes I wondered if it wasn’t too much) how very loved she is, how much she’s needed, how proud of her we are, reinforcing all her strengths, encouraging her. I saw her, until a couple years ago, as a strong, independent, courageous, brave, outgoing girl who always stood up for others as well as herself. She’s incredibly smart, goofily funny, amazingly talented, and also happens to be beautiful.

But it just seems to happen to teenage girls, no matter how they’re brought up, no matter who they’re friends with, no matter what activities they’re engaged in. Teenage girls all seem to suffer insecurity – often debilitating – they doubt their worth and value, particularly amongst their peers. If there are any struggles with friendships, they find the fault within themselves all too often. They are struggling to figure out who they are, and where they fit  in, at the same time hormones are ruling their bodies and minds. Add to that anyone who may be threatened by them, and boom, perfect storm.

I thought I could keep her from going through this – I well and truly did. I’m finding you really can’t shield them entirely. Each girl has to face it – find her worth within herself, learn to accept herself, learn to be okay with who she is, find a peace with herself within herself, learn to be happy with herself. We just have to love them through it, and pray the effects aren’t long-lasting. Lord knows it took me YEARS to recover, same for my sister. I wish I could minimize and fast-forward the process, because when your child struggles in any way, you struggle.

Transitions

Little Man has one more year in middle school, but we are already thinking ahead to high school. The biggest decision will be where he goes.  I’ve been trying to live in the land of denial with this one. I’d rather not consider a) three kids in high school; b) his actual transition to high school (because we know how well the transition to middle school went); c) my baby in high school; d) getting to know a whole new IEP team; and e) his last tri-ennual evaluation, set for his Freshman year. All. Of. That.

He will, of course, have a voice in the decision-making process. What brought it all to mind today is that he brought it up in the car this morning. He and his buddies were talking about high school, where they each wanted to go, and – of all things – the possibility of getting community service hours by volunteering at their old elementary school when they’re in high school. Nothing like planning ahead! Anyways, he firmly stated he wants to go to the same school as his siblings. Okay, well, wow.

There is a math and science high school in town, which is much like the middle school he attends. It’s project-based, heavily utilizes technology, collaborative work, and it’s much smaller than the nearby high school. It’s a lottery process to get into the math and science high school, so it would be luck of the draw to get him in. It’s also across town – at least 20 minutes each way with traffic. So while I think it would be a really good environment for him, I’m unsure he will get in, and unsure of the logistics.

I like the idea of him at school with his brother and sister. I haven’t had all three in the same place in nearly five years. And if he does go there, that will give us that many more years of blessing those hallowed halls with our particular brand of crazy. I’m sure the Principal, VP’s, counselor, and school nurse are already cringing at the thought of three extra years with us around.

Knowing he would have his brother and sister on campus to look out for him and help him gives me small peace. I know how frequently Big Man and P see each other at school (hardly ever) during the day. It’s a big school with 2500 students, give or take. I do panic though…..the more students, the more opportunity for some jerk to give him a hard time. And don’t get me started on the PE situation with locker rooms, etc. I can’t even…..

He’s in a good place now. High school will be a new story. He’s hardly had to change classrooms, is used to not having homework, and has plenty of kids similar to him at his school. The kids know him, accept him, know his quirks and how he is. I can’t entirely picture how that’s going to go in high school. We do have other options besides these two. There is a charter high school, Classical, and other semi-homeschool options (although the thought of him being home more during the school day, well, that’s a whole other discussion). He seems bent on going to school where his brother and sister go.

It’s going to be a transition no matter where he goes. Those transitions are never easy with him. Yes, we have another year where we are, but the process has begun.

The place we’re in

I came across an autism parenting meme on Pinterest the other day, and I had to save it, because it perfectly describes exactly where we are right now with Little Man. The meme said, “If things are going right, don’t touch anything, don’t change anything, in fact maybe don’t even breath. Celebrate it for as long as it lasts.” Amen, and pass the weighted blanket. This is where we are. This is where we’ve been for a few months now. I’m afraid to even type that out loud, for fear it will all come crashing down, and we’ll head back into the storm once again.

Most of his life, I’ve felt I didn’t have even the slightest handle on Little Man. Every time I’d get hold of one straw, everything would change again. He’d have new triggers, new sensitivities, new food aversions, new behaviors. When that baseball memory came up in my Timehop the other day, I read all the “rules” we’d given him before sending him out onto the field…..Don’t make dirt angels behind second base, don’t fill your hat with dirt and put it on your head, don’t throw your gatorade bottle at any of your teammates in the dugout, don’t pick the grass, don’t look for bugs. So. Many. Don’ts. I was a nervous wreck every game, every practice. We never knew quite how it was going to go. That was much of life with him.

The summer before he was diagnosed autistic, I spent every minute of every day micromanaging his life, trying to keep him from melting down or having a tantrum. I was exhausted. I believe he was too. I spent a few years on high alert 100% of the time. Third grade was relatively calm, but in fourth grade, we went right back to that hell. Fifth grade was good. Sixth grade was a nightmare. Sensing a theme here? This time last year, I started counting down the days left until summer. I was beat down. The beginning of this year was much better, and since Christmas, he’s been amazing.  I’m not on high alert all the time.

Sure, we have our routines and tools in place. But it mostly runs like a smooth machine. We just know what to do and how to do it. Am I feeling safe and secure here? Um, no. I’m like that meme….don’t change a dang thing, don’t touch anything, don’t even breath for fear of upsetting this precarious balance. That’s life with autism.

A friend told me long ago – and I’ve written of it too – that life with autism is like living in Seattle. It rains….a lot….but then you get those sunny days, and you just revel in them. The rain will come again, and it’ll be dark, but the sun will come again, for however long. The older he gets, the more tools we’ve given him, the more he learns and develops, the more sunny days we have.

The place we’re in now, it’s still that Seattle, but the sun in shining brightly. If I’m honest, though, I’m not really breathing, definitely trying to keep everything exactly status quo, and I’m seriously not touching any part  of his routine. I am enjoying every second of the sunshine. IMG_0560

He doesn’t do anything

I pulled up  my Timehop the other day, and there were photos and video of Little Man on Opening Day of his rookie year of baseball. That was prior to him being diagnosed on the spectrum. He played soccer and baseball back then. All three kids were in multiple activities. He was challenging to say the least, but he did whatever we put him in, although often begrudgingly.

He gave up baseball first, saying it was boring and he was actually afraid of getting hit by the ball. He would have reached the level of kids pitching that next year, and the thought of it freaked him out. We pulled him out of soccer when it became evident he could actually get hurt as the skill of the kids he was playing continued to improve while his stagnated. He wasn’t exactly one of the bigger boys out there either, nor quite the fastest, which would have helped. We talked about other activities for a couple of years, but nothing seemed to interest him at all, and, quite honestly, I was hauling the other two all over town and beyond for their stuff. Having one kid not involved in anything was something of a relief.

So, he doesn’t do anything….no football, no baseball, no soccer, no music…nothing. He comes home from school, and goes to his computer. He isn’t alone – he has friends over all the time. And he does get outside frequently. But he has no extra-curricular activities. Sometimes I feel guilty about that, but most of the time, I’m totally okay with it.

It isn’t worth putting him in something he doesn’t want to do. That wouldn’t be fair to his teammates or coaches, because he would push back. So yes, we did kind of take the easy way out on this part of his childhood. Will he regret it, or hold it against us someday? I highly doubt it – he’s perfectly content with his lack of extra-curriculars.

We have sent him to camp during the summer. This past summer, he went to coding camp and he loved it. We’ll be sending him back to that program again this summer. He’s lately indicated an interest in learning to play the guitar. We’re working on that.  Big Man will have his driver’s license soon, and that will free up time for me to manage lessons and such for Little Man.

Spouse has started to take him running on Saturday or  Sunday mornings. He doesn’t seem to mind the running and it’s his preferred choice, given the option, during PE at school. We will put him on the cross country team when he starts high school in a year and a half.

For now, he’s not involved in any extra activities, and that’s okay. Do I miss seeing him in his uniform, out on the field? Sometimes, yes. But I certainly don’t miss the drama of making him get out there.