Last Days

Oh lordy, but we are struggling through these last days. It seems an insult to have to carry on with regular school activities for one kid when two have been on their summer break for eleven days. My brain is totally not on reports, Open House, report cards, morning routines, nor on signing field trip/dance permission slips. This momma has checked out, and I do apologize to Little Man’s teachers and team.

He is having a rough go. They had a field trip yesterday. He wouldn’t say what happened, just that it was “horrible.” That may mean one small thing went awry, or it may mean he had a full-blown meltdown. Who knows, and I’m afraid to ask. There’s a dance at school Friday  night for the 5th-7th graders. We haven’t even discussed it. I have to keep reminding myself his Open House is Thursday night (can I send a surrogate, or would that be frowned upon?). I got an email from his SAI earlier today he has completely pushed back on being in the classroom for the 7th grade health class. While I feel the curriculum is important, appropriate, and not beyond his abilities/understanding, I don’t have it in me to fight him right now, nor deal with the fallout of pushing his boundaries. We’re both toast. My response to her was I was fine with him sitting this one out.

His anxiety is elevated. He’s done. He wants nothing to do with getting out the door in the morning. He has asked daily to take his plushy  to school (I’m still saying no to that one). He’s forgetting necessary items. He’s basically pushing back on almost everything. While I know he will have another adjustment period once summer does start for him, we are both so ready to be through this process of the end of the school year.

I looked back through my end-of-year posts through Timehop on my phone. So many of them reiterate this feeling – he’s over it, he’s stressed, he’s anxious, he’s ready to be done but he’s also afraid of the change of routine/lack of routine that comes with summer. No matter how much he matures and grows, change in routine and structure is an achilles heel for him, and it likely always will be. His tool box is forgotten by this point, and we all just hang on for the ride. It’s a bit brutal, and these are the days I would do anything to make this all right and better for him. This is when I raise a certain finger to autism, because it makes days that should be full of fun and excitement stressful and anxiety-ridden. Add to that fact his siblings are swimming, hanging out with friends, sleeping in and enjoying summer while he sits in a classroom, and you have a boy (and a momma) who is just over it. #bringonsummer

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?

Radio Silence

You’ll notice I’ve been fairly quiet on the autism front lately. Honestly, he’s been in such a good, stable place, and I’m trying to take it all in, revel in the sunshine, because I know the dark days will return.

School is going so well for him this year. I chalk it up to him  having two teachers and an SAI who have found the perfect balance of tough-love and compassion. They push him to his limits, and sometimes a little beyond. It’s helped him grow and center this year. It’s truly a relief to see him out the door in the morning and not be a basket-case of stress all day, waiting for a phone call or email. He forgot to take his ADHD meds Friday morning, and I couldn’t get them to him all day, but he survived, and said he had a great day (his teachers may have had something else to report on that, but I’m of the opinion at this  point of don’t ask if you don’t want to  know the answer).

He did well over Break too. Oh, he had his usual Holiday anxiety, and a couple of small meltdowns. He does struggle yet with lack of routine and changes in routine. He did pop out of the Star Wars movie three times to go to the bathroom (read: take a break from the sensory input), but only once when we went to see Fantastic Beasts and once during Sing. His general anxiety comes and goes. But honestly, he’s with his friends more than his neuro-typical siblings are with theirs. I hear him laughing, talking, engaging, leading, compromising. He has his moments – times I need to tell him to check his tone, deal with his siblings and friends wanting to do something other than what he’d rather do – but for the most part, he’s just in a GREAT place. So we’re taking it for what it is, and going with it.

We watched The Accountant last night. Definitely saw it through different eyes than I might if I didn’t have an autistic child. It was a decent action movie, but it did make me think about what my precious boy goes through, how he sees and interprets the world. I was also reminded he will find his way, his own path, learn  how to deal in this world. He will be okay, and that’s what matters. He’s a brilliant boy with a huge heart. I couldn’t ask for more from any of my children.

Came across this picture of him on his second birthday, and it just made me smile – there’s such joy on his face..little-man-in-balloons

 

Conference

It’s the time of year for parent/teacher conferences. We had Little Man’s Monday afternoon. I’d been a little bit nervous about it since getting the notice a couple weeks ago, especially after reading the social story for his days at school. We struggled mightily last year to get him to stay in class long enough to participate in the lesson, and get his work done. And then he wasn’t bringing his work home to finish. It was a battle the entire school year. How would that affect him academically in the long run? He’s a smart kid, but even smart kids can fall behind if they’re not doing the work.

I’ll admit, I was also a bit nervous about talking with his teachers (he has two main teachers this year, plus his special ed teacher). It’s always this thing for me – that his teacher(s) will see through the prickliness to the amazing, gifted boy inside. He has so much to give and share, but it takes a certain type of person being patient enough to be allowed in to see that.

Let’s add to all of this, the conferences are student-lead. He had to walk us through his progress report. When he *has* to do something, he can shut down, go completely silent, not comply. But comply he did. I was amazed. What struck me the most is his self-awareness. He totally knows his strengths and the areas he needs improvement. He explained them all, as well as his plans for improvement where he needs it. I was stunned. He’s completely in tune with what we as his parents and teachers know. We didn’t have to tell him.

It seems he’s blossomed this year. I think it’s a combination of things….he’s familiar with the school, its rhythms and routines. He has a good core group of friends at school and in the neighborhood. He has matured somewhat. I can’t help but think lowering the dose of his ADHD med, and thus taking away some of the resultant anxiety, has helped him as well. His meltdowns are fewer. His anxiety is lower. His patience level is  up. His frustration level is lower. That means he is in class more than he was last year. He’s finishing his work before he bails. He’s taking more time with his work. He’s excelling academically, and he’s proud of that.

We still have things to work on, things we need to make sure start happening so that wherever he ends up for high school, he is prepared in all ways. I did breath a sigh of relief walking out of our conference on Monday. I’m going to hang onto that for a bit. The future will come when it comes and we’ll deal with it then. For now, I’m back to reveling in this.

Twas the night before the first day…

…..and all through the house, pretty much everyone was sleeping, except my littlest mouse. He was so excited for his first day of school. Excitement for an event is a double-edged sword with Little Man. On the one hand, it’s awesome to see him get excited about school. On the other hand, excitement for something coming usually also brings with it a crazy level of anxiety. It’s been years since he went to sleep easily the night before the first day. Last night was certainly no exception.

His bedtime is 8:15. Well, that’s when he goes upstairs to brush his teeth, wash his face, and – in theory – read for a little bit before lights-out at 8:45. By 9pm, he’d been back downstairs five times, his face full of anxiety and worry. The tears started about 9:30. By 10, he’d been back down a few more times. I went up at 10:15. When I peeked into his room, he was quietly laying under his weighted blanket, eyes open. I could almost feel his stress. I tucked him in, told him to breath, and said goodnight.

At 11:30, he was in my bed. Spouse wanted him to go back to his room, but I knew it was a pointless battle, and needed him to sleep. I do think he slept for a bit, but at 2am, he was awake, tossing and turning. He went back to his own room. Moments later, I heard him crying. Sighing heavily, I made my way to his room. I lay beside him, trying to calm him, trying to get him to focus on anything but his anxiety for this morning to come. We breathed, counting in and out. I left him quietly counting, and went back to my own bed. Twenty minutes later, he was back in my bad, grasping my hand with his, holding them both close to his heart. Around 3am, we both finally dropped off to sleep.

I let him sleep as long as I possibly could this morning. When I went to wake him, he was already awake, with a smile on his face, and excitement to begin his day. Me? I’m on cup 3 of the mighty coffee. I may be saying a few bad words and lifting a certain finger towards autism today.

Anxiety is a real thing. Anxiety over good events is a real thing. I watch him struggle with this multiple nights a year – the night before his birthday/birthday party, the night before the last day of school, the night before the first day of school, and Christmas Eve. I can count on insomnia and tears. I can count on at least one meltdown. I can count on his face looking towards me for help. It doesn’t seem to get better no matter how many times we go through it. It doesn’t seem to get better no matter how much I pray he will have calm and sleep.

Autism won last night. We’re trying to not let it win today.

One. More. Day.

Little Man starts school on Wednesday – yes, a full ten days after his siblings started. Let me tell ya, it’s been a LONG eight days. He thought it would be so cool to still have a week and a half left of summer. Yeah, not so much. By day two, he was crying by early afternoon, wanting his brother and sister home. It didn’t help I was busy with work and couldn’t cater to him all day. Blessedly, his besties have still been on summer as well. He figured out quickly it isn’t awesome being the only one home all day.

I’m ready for him to go back. Yes, I dread the fact they’re all three growing  up so quickly, and I miss the early days of preschool and school. But he needs structure back. I need those six-point-five hours a day to maintain my own sanity. I love summer – beach trips, vacations, time with family, the break from routine, the lack of homework battles, the later, relaxed nights. But I know I am a bit better mom when we all have some time away from each other during the day.

Little Man has been struggling the last week or so. Impending routine change will always do that, and I don’t know why I always forget that  until we’re well into the tears, meltdowns, and outbursts. All of the sudden, a lightbulb will go off in my mind, and I think, “Oh, yeah, routine change is coming, which means anxiety and stress for him.” As much as I knew I needed to warn his teachers towards the end of the school year, I needed my own warning towards the end of summer.

We have one more day. He will do okay the first few days, maybe the first two weeks. Then the wheels will fall off, until he’s fully adjusted back to the school routine. Every year I pray it will be different. Who knows….maybe this will be that year. But we have one more day to get through first. And trust me, tomorrow will totally suck.  Sleep will not come easily tomorrow night. There will be battles and tears most of the day. And once I drop him off Wednesday morning, he and I will both breath a short-lived sigh of relief.

Some days, he’s exhausting

Yesterday morning was not one of my more-stellar mornings in mom-land.  But let me back up a moment……

Part of high-functioning autism is not recognizing tone….at all. That skill does not come naturally to him. He’s spent years in speech and other therapies learning to take in context, what accompanying facial expressions might mean, what the most positive intentions behind the words he’s hearing may be.  It’s not an easy nor quick process for him, which is totally not functional in real-life situations.  Needless to say, he frequently takes words and interprets the most negative intent, and the spiral to meltdowns and angry outbursts is on.

Corrections, adding information, constructive criticism aren’t usually handled well.  Most days, we take it for what it is, take a deep breath, slow down, let him process. Yesterday was one of those days. Exhausted to a level I haven’t been in months, I had an in-the-red patience level. I tried to slow him down, but he was having none of it. He started raging. I yelled. I hate when I do that. It was effective in the moment, but has long-term repercussions. Not five minutes later, the same exact episode repeated. You’d think I’d have taken a breath myself, but no, it was almost exactly the same outcome. Gah!! As I walked out the door to take Big Man to school, frustrated, worn out, upset with myself, upset with him, he let one more outburst fly.  I turned, at my wits’ end, and told him, “Some days, you’re just exhausting.” Oh yeah, another mom win right there.

We talked later. I had a ridiculously long day that ended about four hours after I wanted it to end, but we did squeeze in a talk about the morning’s events. He blessedly forgave me. But honestly, some days, he’s completely exhausting. Being a parent is work. Being a parent to an autistic child….it’s a LOT of work some days…most days.  I just don’t usually tell him he’s exhausting. I can’t get that back. It’s out there. He’s heard it. He knows it. He also knows that most days, I have enough reserves to give him the grace he needs and deserves.