Huddle

We have two more weeks before our kids are on spring break. It seems an eternity since the holidays, so we are all looking forward to a much-needed break. The Herd will be headed out on an RV trip to some National Parks. We had invited a few other families along, but it didn’t work out for either of them to join us, so it will be just us – just the five of us. While I was super bummed our friends couldn’t come along, I’m now grateful for the time we will have as a family.

I’m feeling we need a family huddle – a time to re-group, reconnect, heal some wounds, help recover from some lessons, push a re-set button. It has been yet another haul this school year. We’ve had some really good things happen, but we’ve also each slugged our way through some pretty heavy stuff. I think we could each use some time to lick our wounds, figure out what we can fix, how we can fix it, what we need to move on from, what lessons have been learned, how we can communicate our needs to each other much better than we have been. We can remind each other all the great stuff about us.

Oh, it won’t all be serious stuff over the whole week we’re gone. There will be adventures – lots of hiking and biking. There will be lots of pictures, because that’s what I do. I’m already planning the scrapbook for this trip in my mind (and on Pinterest). There will be music, food, games, books, late nights, blessed mornings. Someone will say something funny and it will become part of the fabric of our family – another story to tell in years to come. We will see amazing things, go amazing places. There will be meltdowns, arguments, frustrations, but those are all part of building memories, right?

I just feel we need this time to figure out who we are as a family once again. I cannot wait to see the places we’re going to see, but more than that, I cannot wait for the time together, away from tv, friends, distractions, training schedules, classes, homework, practices, computers.  We will be contained in one RV – no separate bedrooms to run off to and close everyone else out. I’m sure that may sound like some form of torture for my three teens, but I think they’re looking forward to this as much as I am. The time with them still under our roof is speeding quickly by. I’m grateful to have the chance to be with them, experience something new for all of us.

Does your family take huddle time sometimes?

I told myself not to get comfortable

If you have any experience with an autistic child, you know it comes with its ups and downs, backwards and forwards, twists and turns. I wrote a couple of weeks ago that we were in, and had been in for awhile, a good place. Well, yeah, I told myself not to get comfortable, and for good reason.

I’ve had two emails from his special ed teacher within the last week. I might be saying some bad words to autism right now. He’s pushing back on work. He doesn’t want to try when it’s hard, or if he thinks he can’t do  it. He’s giving up. Yesterday, he left the classroom for twenty  minutes (we’d had him down to less than five minutes, and usually staying inside the classroom, for months), couldn’t tell the teacher what was wrong nor what he needed. Gah!

Essentially, he’s not using any of the tools he’s been given, and he’s backsliding. It happens, but it’s frustrating and gut-wrenching every single time. I told his spec ed teacher I’m grasping at straws trying to figure out what may be going on. Who knows what’s triggered him this time. It could be he’s had too long without a break from routine (but then we know breaks from routine also set him off). It could be something as simple as his brother getting his driver’s license, thus setting off a change in his “normal”. It could be the cold he’s fighting. It could be the trip we have coming up. Or it could just be a normal autism blip.

I needed him to stay in a groove. I’m dealing with a ton with the other two, and his status quo was helping me stay sane. But such is the way of parenting life. Just when you think you have a handle on one thing, something else comes up. Every week seems to bring something new. difficult, agonizing.

We do have a trip in a few weeks, over Spring Break, and I can’t wait. We need a family huddle break – an insulated, away-from-it-all escape. It will be just the five of us. I’m bummed our friends can’t come with us, but at the same time, I’m looking forward to it just being us, creating new memories, enjoying new experiences, seeing new things, and reconnecting.

We’ll get Little Man back into his happy place. This too shall pass. The sunshine will return, and the rainy day will be a memory again – one more blip, one more hurdle overcome.

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.

Soon Enough

I’m faced daily with the fact our time with our kids is running short. Soon enough, too soon, the oldest will be starting college visits, will begin making choices for his future, will graduate and head off to college. The year after, the middle will do the same, and then we’ll just have two years left with the little at home. It’s completely cliche, but these years are going to fly by.

When your kids are little, you count up….you count up the years, you count up each milestone reached, each phase, each stage. They start school, and you count up the grades. Our script has been flipped. I’m now counting down. Each milestone is one step closer to our house being empty. We’re weeks away from Big Man getting his driver’s license. Soon, I won’t be driving him to and from school anymore, won’t be driving him to and from practices. I’m counting down the number of times I will walk out the door to the car to take him to school. I’m counting down the number of times I’ll need to sit outside the high school waiting to pick him up. I’m counting down the number of times I’ll wait for his text they’re on the last hole at the golf course so I know when to go pick him up. While there’s some joy and excitement in the freedom it will give both of us, it’s a step away for him…one more move towards adulthood and independence.

We count down the sports seasons. He has two more cross country seasons, three more golf seasons. I remember how long four years used to seem. It’s not that way anymore. I didn’t even get to see him race this year but once. I feel a push to take advantage of every opportunity to witness his achievements.

Same goes for the Princess. I’m counting down the number of recitals and Nutcrackers she has left before she’s off to college. I’m counting down the number of games she will cheer, trying to be there as much as possible. I don’t want to miss a thing. She’s started her online driver’s ed. She will take her permit test in April, her license test in October. She’s spending more time with her friends. She’s charting her own territory. Before I know it, 6am cheer will no longer be my problem – she’ll be taking herself. The nights driving to and from the studio, or sitting there for hours while she’s in class will be history for me. I can’t really begin to wrap my brain around that. What am I going to do with myself?

Every first is another notch in the countdown of them growing up. I feel myself counting down, nearly every day. We only have so many spring breaks, so many summers, so many first days of school left. I’m trying to process that. I’m trying to hold onto each moment I have with them, make them all count, but not go completely off the rails so much I hold them back. I actually asked the Princess permission to watch her cheer tonight at a wrestling match. Yeah, that.

When they were little, the days did last forever. I struggled to reach bedtime every single day. I counted hours from waking to bed, wishing days away because they were hard. My toddlers got the best of me. My littles exhausted me. I couldn’t wait for sports seasons to be over so I could breath. I longed for the end of each school year so I could be done with the homework battles and endless projects, as well as the morning hurricane process of getting them out the door. The saying, “The days are long but the years are short” is truth.  I wish I’d realized that in those early days, because now I’m counting down, and I’m very aware how short the next few years will be.

What’s it like for them?

I saw a book on an autism page I follow, written by the sibling of an autistic child, about what it was like to be the sibling of an autistic child. I didn’t read all the details – the book was targeted towards younger children. But it got me wondering again what it’s like for Big Man and the Princess to be the brother and sister of Little Man. How are they changed, how are they different from who they would be if not for autism being part of our daily world?

Every family has their stuff to deal with. Autism is what’s on our plate. Currently, they are in a different school than Little Man. That will be so for another year and a half. And, quite honestly, we still don’t know he will go to the same high school as they. If he does, how will that change their lives? They get that respite for seven hours a day. They get to be who they are, rather than “sibling to an autistic kid” being in their face constantly. But when they bring friends home, it’s there. Do they explain beforehand? Do they have to explain again? Does it bother them? Does it enter their minds when they’re building those outside relationships? Does it make them anxious?

Here’s the deal  – Little Man is high functioning, and while his social skills have improved immensely, his particular issues mean he can sometimes come across as just a jerk, rather than a kid with autism. Does that make sense? And then there are his quirks – carrying around stuffed animals, obsessing over particular video games and wanting to talk about them ALL THE TIME, needing to leave the movie theater multiple times during a movie when the stimuli is simply overwhelming him, often behaving like an 8-year-old rather than the almost-13-year-old he is but then frequently showing his extreme intelligence. I don’t know how new people, people who don’t really know us, know him, take that in. As siblings, do they, and how do they, prep other people?

Other than that, what is it like for them to be his brother, his sister? I know I lose patience with him sometimes. Trust me, there have been days I’ve seriously earned the Mother Of the Year trophy. Last week, the Princess had enough of his (what should have been thinking bubble) comments, and blasted him. You can bet it didn’t go over well. I completely understood her losing patience. Do they understand why he gets treated a certain way in certain situations? Why he might be allowed to not eat what we’re eating? Why he might get his phone when we’ve said no technology in some social situations? Why we still find him in our bed some nights and don’t always make him go back to his own room?

I’ve seen the Princess mothering him, managing situations to minimize the potential for meltdowns, helping him. Big Man seems less engaged that way, but I know it’s in there, I know it affects him.

If I allow myself to go there, I can nearly break with the thought their lives shouldn’t have to be affected by autism. I do believe it will, in the long run, make them more compassionate, patient, empathetic, understanding people who will defend and stand up for those who need it. I just wish they didn’t have to learn that first hand. What’s it like for them? I may never know completely. I know I generally keep what it’s  really like for me to be his mom to myself (and my blog). I wonder how much they’re keeping to themselves what it’s like to be his siblings?