Your Guess

It’s been pretty quiet on the autism front in the Herd household this year, thank the good Lord. I said it earlier this year, but it’s worth saying again….we desperately needed a quiet, drama-free year for our Little Man. Last year was dreadful, draining, overwhelming, awful. But you know in the wonderful world of autism, there are lots and lots of roadblocks, speed bumps, dips, turns, and storms. They’re not unexpected, but still disappointing when they happen.

Little Man has almost five weeks left of school. Good golly – that just sucks, especially as the bigs are out in two weeks. He knows the end is near. They’re in the middle of the standardized testing. He wants it over with quickly. Routine has been busted a bit at school because of the testing, but he’s also aware the end of the year is coming,  which means an even bigger routine bust. He does not do well with changes in, nor lack of, routine. I see his anxiety levels rising. I see some old behaviors returning. I see less tolerance and patience from him.

I’ve had a couple emails from his SAI at school letting me know he’s pushing back on work, he’s spending more time out of the classroom again, he’s pacing, his breathing is elevated. She wanted to know if I had any clue why this  might be happening. Uh, nope. Your guess is as good as mine. I could point to any number of things, but there doesn’t seem to be one thing we can say, “Yes, that’s what’s making him behave this way right now.”

We keep reminding him of his tools. We keep reminding him what he’s capable of. We keep reminding him the many successes he’s had this year. None of that changes whatever’s going on in his head, nor how he deals with life. So we do what we can at home. They do what they can at school. We pray this is just a blip and not a sign of long-term struggles.

I know better than to borrow trouble, but next year is his last year of middle school. There’s a new building with classrooms for the 8th graders. They will do things a bit differently for 8th grade than he has in sixth and seventh. He will have to participate in his IEP meetings. And the transition to high school will start. He knows it’s coming. I can’t help but think that may be hanging over him a bit, even though it’s in the distance. I know it’s hanging over me.

So we hang on for the ride the remainder of this school year, hoping this is just a temporary dip. But as for what the root cause is of this particular dip, your guess is as good as mine. And thus goes life on autism street.

Limping toward the finish line

We are, literally and figuratively, limping toward the finish line of this school year. God, it’s been a rough one. I thought last year was bad. Apparently this year saw last year and said, “Here, hold my beer.” This Herd is DONE. Toast. Finis. Exhausted. Drained. And oh yeah, I am limping.

You see, two days after the Bigs finish school, Big Man and I will run the Rock n Roll Half in San Diego again. My training was a bit derailed last week. I headed out for a four-mile easy run Thursday. I immediately felt pain in the left side of my left knee, and my left Achilles tightened up too. I tried to work through it, slowed down, and then stopped to stretch, but it just hurt. I made it all of .88 miles before I caved. At just over four weeks til race day, I wasn’t going to risk injury. And it really freaking hurt.

I hate when I have to stop a run because of pain. My whole day goes downhill. I was able to get out and finish four miles on Friday morning, but it wasn’t easy. There wasn’t any pain, but there was discomfort. I had to mentally fight to the end. Same happened on this morning’s 5-mile easy run. I was super slow, my muscles didn’t loosen up until mile 3. I will admit, I was tense, afraid the pain from last Thursday would return. I’m so not where I want to be mentally and emotionally with running right now. I’m afraid for this race, afraid I’ve put too much pressure on myself. I’m a little scared.

As for school…we’re usually beat up by this point. That’s nothing new. What is new is the level of being drained we are all at. It’s bad. The Bigs have four more weeks of school – 18 more school days. Big Man just finished the second of two AP exams this morning. The Princess has hers this Friday. In a few weeks, they face final exams. Blessedly they don’t seem to have the level of end-of-school-year projects they’ve had in recent years, thank the  Good Lord. It’s been a brutal year for both of them – academically for Big Man, socially and emotionally for P. We’re all ready to be done, to put this year behind us, chalk it up to life lessons and growing pains, and kiss it goodbye. Don’t let the door hit ya on the way out, 16/17 school year.

Little Man has 6.5 weeks of school. Yep, you read that right. He isn’t out until June 20th. I can’t remember when my kids were in school that late – past my birthday this year. Insanity. That’s 18 days AFTER the older two finish. Utterly ridiculous. I’ve been whining about it since the calendar was released last year. Then, get this, because they are aligning the middle and elementary school calendar with the  high school calendar, he will have just eight weeks of summer, as opposed to ten or eleven. Again, absolutely ridiculous.

He’s struggling right now, again. His SAI sent me an email the other day he’s back to leaving the classroom quite a bit again, spending a significant amount of time in the great room rather than in his class, doing what he’s supposed to be doing. She said he seems more stressed but he can’t express why. We have seen an increase in his anxiety level at home. I have no idea what the source is for his stress. He does tend to go a little sideways the closer we get to the end of the school year, but who knows.

I have no energy. I’m tired. I’m over the morning routine and homework battles. I’m tired of thinking about carpools, 6am cheer, and test scores. The kids are tired too.

You know, some years we come sliding across that finish line with a bang. We’re beat up, but we fight to the end. We might make it by the skin of our teeth, phoning it in on whatever we can. But this year, we’re limping. It’ll be a close thing. I know we’ll get there, but it ain’t gonna be pretty.

And I thought that was hard

Big Man was born 3.5 months too soon, and spent ninety-three days in the NICU. I spent countless hours driving back and forth to spend countless hours sitting by his isolette. I watched him forget to breath, watched his heart rate drop, watched him turn gray, watched him battle his own infections, watched machines keep him alive, watched him fight to survive. And I thought that was hard.

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Big Man on his birth day

Big Man came home from the NICU, and we had a home health nurse out every other week, a developmental specialist out every month, bi-weekly doctor visits for weight checks, monthly doctor visits for synagis shots to keep him from getting RSV. My life, my schedule was not my own. He didn’t want to be put down, ever. I had to learn to let go of my want for routine, schedule, time. And I thought that was hard.

When Big Man was four months old, I discovered I was pregnant with the Princess. I faced a pregnancy certain we were going to be back in the NICU. I was full of fear and anxiety. I saw a specialist OB (perinatologist) every other week, until we got past the gestational age Big Man was born. Then she had to be induced at 41 weeks 1 day. And I thought that was hard.

Big Man was developmentally nine months old when the Princess was born, so I basically had two infants under one roof. They are twelve months and nineteen days apart. Sleep was at a premium. Bottles were everywhere. We all three cried for hours every evening. And I thought that was hard.

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Big Man had high muscle tone on his left side, and a mild speech delay. Enter therapists visits to the weekly routine. And I thought that was hard.

When Big Man was nearly two, and the Princess eight months old, we moved….400 miles away.  I left my career of ten years. I left my family. I left my friends. I left my church. We moved in with spouse’s  (awesomely amazing) parents for eight months while our new home was being built. I found a new job I hated. It took forever to build new relationships. I had two toddlers in a new place, and I wasn’t entirely happy…yet. And I thought that was hard.

I had two toddlers under one roof – two toddlers who were like the wonder twins. I couldn’t keep up with their creative disasters. They finger-painted with baby shampoo in the middle of Big Man’s room. Baby shampoo NEVER comes out of carpet, ever. They unraveled a Costco-sized package of toilet paper up and down the upstairs hallway. They threw another Costco-sized package (out of the plastic wrapping) into my big jacuzzi bathtub. They ran away, down the street and around two corners, while I fed their six-week old baby brother. Big Man cut ALL of the Princess’ hair off, to the scalp, twice. They colored the underside of the pool table. I caught them, frequently, eating frozen waffles underneath the dining room table. Ditto bags of candy they’d climb on top of the fridge to retrieve. And I thought that was hard.

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I had three kids under four. I can’t even list all that drama, but I thought that was hard.

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The Herd in earlier days

There was a time they were all three involved in multiple sports….baseball, soccer, dance, piano lessons, golf. I lived at whatever field it was the season for.  I spent hours and hours in the car getting them each to whatever practice, game, lesson, or recital. And I thought that was hard.

Big Man was diagnosed ADHD, and with a mild visual processing disorder in second grade. We chose to medicate the ADHD. He fought the medication for the first year. I’d find pills hidden in the kitchen drawer, under the lazy susan in the middle of the kitchen island, and pretty much anywhere but in him if I didn’t watch him take it and make sure he actually swallowed it. He got glasses, and we got an every-six-months schedule of appointments with the pediatric opthamologist. And I thought that was hard.

I had three in elementary school. I went on field trips. I taped, glued, cut, copied, read to kindergartners and third graders, ran the book fair, was on the PTA, and basically lived at the school. We lived in nightly homework hell. And I thought that was hard.

Little Man was diagnosed on the autism spectrum, and ADHD, in second grade. It nearly broke me, but we finally had an answer, and a plan, and help. We entered the world of IEP’s, special education, accommodations, speech therapy, psychiatrists and therapists. And  I thought that was hard.

We moved on to middle school for the older two – ugh, middle school and middle schoolers. They each got their first phones, and we had to start talking about internet safety, data plans, and had to come up with rules of how we would handle things. And I thought that was hard.

Now here we are…..two days away from having three teenagers under one roof. Two are in high school. I was ill-prepared for the drama, the angst, the emotional rollercoaster, the pushing back against rules we’ve had in place forever, the angry words that instantly bring tears to my eyes, the eyeball rolling, the intense search for independence, the life-lessons they are learning through which I just want to help but know I need to stand back and let them have at it, come whatever the natural consequences will be. I’ve watched my biggest baby boy struggle to find his way academically when it used to come to him so easily I think he took it for granted. I’ve watched P fight to find herself – somehow losing (hopefully temporarily) the brave, bold, confident girl we used to know. Then, recently, came the day Big drove himself and P to school, his driver’s license finally earned. And I think this is hard.

Within the next five years, I will watch as they have all the rest of those “firsts”, as they graduate, and leave for school, only ever to come back for what will essentially be visits between semesters and school years. I know I will look back on all those things I thought were hard and will know that was nothing, because watching them go be their own people, away from us, my heart living outside of me (possibly far away from home), now that, that will be hard.

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Our Little Corner on Autism Street

I finally brought myself to watch the 60 Minutes segment on the new Sesame Street character, Julia.  Julia is an autistic girl. As seems to be par lately, I sat there watching, with tears rolling silently down my face. This is our world. I couldn’t help but wish Julia had been around ten years ago or more. It may have made his life a little easier if kids had had the chance to learn about autism before he spread his own version of awareness in his classrooms. I hope Julia helps kids, and even  adults, understand autism – that it isn’t something to be afraid of, to turn away from, or to bully.

Here’s the thing – his autism is real. It isn’t ever going away. It is a lifelong diagnosis. There’s no curing it. You don’t take antibiotics for ten days and recover from autism. It is him, it’s part of him.

What does our little corner on autism street look like? Well, take this morning for instance (which mornings aren’t his favorite anyways). Big Man accidentally made too much noise while getting ready for school in their shared bathroom, which woke Little Man up twenty minutes before his usual wakeup time. Anyone can be cranky in the morning, but for us it meant Little Man yelling at pretty much everyone, slamming doors, stomping around upstairs, and just generally letting everyone know he was not happy. In a word, he threw a tantrum. This is not the tantrum you think of with a spoiled or over-tired three year old. It’s something he can’t control. His emotions overwhelm him, and this is his reaction as he can’t process it out, or put words to his feelings. This happens any time something unexpected happens, there’s a change in his routine, we run out of his favorite food, or the battery runs out on his iPad when we’re at a game/event/dinner out. He’s improved ten thousand percent in the last few years. His tantrums are fewer and further between, but they are still part of life.

Meltdowns are also part of life, although, again, there are fewer, and his recovery is much quicker than when he was first diagnosed. Meltdowns usually happen when he gets hurt, or there’s a sudden and unexpected loud noise. Lord help us if a siren goes off he’s not expecting. It’s even in his IEP he have advanced notice, if at all possible, of fire/lockdown drills at school because he will lose it if that alarm goes off and he isn’t expecting it. When we take him to movies, he will use the excuse of needing to go to the bathroom when the sounds get to be too much, or there’s too much action. He’s been known to leave the theater five times during a 2 hour movie, although lately we’ve been able to get that down to two or three trips out. The odd thing about this is, if he chooses to listen to something, he has it turned up SO loud!

He still travels with his favorite stuffed animals. He will be thirteen in a few days. Yeah, that. You should see him watch them go through the security scanner in airports – his face anxiously watching from the other end to make sure they come out safely and don’t get stuck in the machine. We tend to pre-board airplanes because standing in line, and having to get into his seat quickly when there’s a line of people behind us, makes him very anxious and overwhelmed. And  you can bet I  make sure to have all his favorite snacks packed in his airplane bag.

Speaking of food – when  your kid is autistic, you can almost bet his food choices are going to be minimal, and you’d better make sure you don’t run out of more than one of those minimal choices at any given time. I have been known to, in a panic, rush to the grocery store before going to after-school pickup just so I have what I know he will eat. Our restaurant choices tend to be based around whether they have pasta, chicken strips, or burgers on the menu.

He has a weighted blanket, and a weighted hoodie my mom made for him. What a godsend! That blanket has really helped not only his sleep, but when he’s really in full meltdown mode, he gets under it and calms pretty quickly. I can’t even hold the blanket – it makes me claustrophobic, but it’s a comfort for him to be under it.

He does have his obsessions – currently YouTube videos of gamers playing his favorite games, Plants vs Zombies, paper crafting his favorite characters from his favorite video games, coding, and video game music.

He seems much younger than his siblings did at this same age. He seems much younger than many of his peers.While chronologically thirteen, he is emotionally and socially about the level of a 7 or 8 year old. He’s intellectually the equivalent of a high school senior, if not more. It’s an interesting, frustrating combination, particularly when he can’t articulate his thoughts and feelings.

He has very little tolerance of anyone talking down to how old they think he is. Quickest way to get him to be as rude as possible is to be condescending to him. He will light you up, or he will refuse to speak to you but will let you know with his glare exactly what he thinks.

We don’t go anywhere without some kind of screen and headphones for him. It’s that simple. Yes, we frequently get those judgemental looks in restaurants, etc when he pulls out his iPad or phone, puts his headphones on, and completely disengages. Trust me – you don’t want to deal with the alternative.

He does flap his arms a bit, get over-excited, sit in odd and contorted positions.  He has his tics, for sure. We’re used to them, and I don’t think about them much, unless we’re out or around someone new and I notice the glances and staring.

He does perseverate. He doesn’t like to try new things. He doesn’t want to do anything he thinks he can’t do successfully. He pushes back on things he thinks he can’t do. His anxiety causes sleep issues, especially when he’s out of routine.

So that’s our little corner on autism street. That’s not his entire story though. He’s utterly brilliant, witty, loves puns, incredibly creative. He’s amazing, he’s mine, he’s autistic.

The Healing Baby

Little Man will turn 13 later this week – that’s right, we will have THREE teenagers under one roof. (send wine)  He doesn’t seem thirteen to me. It doesn’t seem possible on the one hand – it feels  he was just born. On another hand, because he’s autistic, and because he’s the youngest of our three, he just seems so much younger than Big Man and the Princess seemed at thirteen. Is that always the case with the youngest?

I knew, even after having our boy, and then a year later, our girl, that I wasn’t done, for many reasons. I’d always imagined myself as a mother of three kids. I didn’t feel done with having babies, although Spouse would have (back then) been good with just the two we had. In my heart, something was missing. More than that, I was hurting. I’d suffered a miscarriage, I’d had our firstborn ridiculously early, my pregnancy with the Princess was full of stress and anxiety we would go through another premature birth. I needed a pregnancy on my terms.

Little Man was just that – a pregnancy on my terms. He was my happiest pregnancy, even with that awesome morning-but-really-all-day sickness during the first trimester. I was relaxed. I was calm. I was so happy. I sang to him, I talked to him, I played music for him, I constantly had my hand on my belly. The day after my due date, having been dilated to 3cm’s for almost three weeks, I was induced. He took his time coming out, and there were a couple of hours of stress, but then he was here – the only baby put on my belly at birth. I fell in love instantaneously.

I won’t lie and say that day was perfect. We did have some stressful hours that day. He wasn’t in a good position, I wasn’t progressing, and then he started having some heart rate decelerations. We talked c-section, but then my doctor got him shifted, and things went quickly from there. Little Man had some junky breathing hours after birth. He spent some time in the nursery, and there was a brief consideration of sending him to the NICU. But then they brought him to me, and I held him, and he settled.  His first two nights home, he didn’t sleep, at all. I did, for real, fall asleep standing up. But day three home, he became the perfect infant, for the most part.

Before I got pregnant with Big Man, I had dreams of a very blond little boy. Well, Big Man was born with platinum hair that all fell out, and came back in brown. Little Man was that blondie I dreamed of, to a T. He was my healing baby – he helped me recover from all the pain, fear, guilt, grief of a too-soon birth, and then a too-soon pregnancy right after our NICU stay. He was my baby, my way.

When he was diagnosed on the spectrum, I remember feeling somehow that healing was being torn away. My perfect pregnancy, near-perfect birth, perfect baby wasn’t perfect anymore. But then a beautiful friend reminded me a diagnosis doesn’t take away who he is, how he came to be. Autism couldn’t touch how I felt the day he was born – all those cherished memories weren’t gone. He was still that beautiful blond toddler I’d dreamed about and held in my arms.

Thirteen years ago, he took away so  much pain, and brought so much joy. He completed our family, completely. I’m so grateful God saw fit to make me this precious boy’s mom.

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.