This Familiar Place

We’re almost two months into this school year. For the past week or so, I’ve noticed some regression in Little Man…..more tears, more outbursts, a couple of full-blown meltdowns. His anxiety level is up.  He’s pushing back more. Then we have that situation I wrote about last week. He’s not really interested in going back to that particular class. Friday and yesterday, he spent significant time in the nurse’s office complaining of a bad headache. Friday, I ended up bringing him home. Yesterday, I took him ibuprofen at 9:30, but then got another call two hours later to come get him.

He’s fine. No other physical complaints, just the headache that only appears at school.

Here’s what I think, having done this school thing with him a few times before. I think he’s maxed out. Does that make sense? He just reaches a certain capacity to tolerate it all, and then hits a wall. We typically see this happen six weeks or so into the school year. It doesn’t even take me a few days or weeks to catch on to what’s happening. I just  know, as soon as we see this regression start it’s because he’s tapped.

I can’t pull him out of school just because he’s reached a wall. I can’t let him skip doing his work just because he has little left in  his tolerance tank.  I can’t let him just escape. I do give him a little space where I can, but we can’t allow him to retreat completely.

It’s so painful to watch him struggle. It hurts my heart. The world isn’t always kind to everyone, much less those with different needs. Every time he goes sideways, I mentally go back to that night he told us this was too hard and he didn’t want to do life anymore. I’m terrified….that is my biggest fear for him, always. Once your child says those words to you, you will never get over it. It’s always there in the back of your mind. But then there’s a fine line between acknowledging that’s there, and pushing him through situations because that’s what he has to do.

We are where we are. We’ve been here before. It’s a familiar place. Even knowing it’s probably coming doesn’t make it any easier once you notice you’re there. But we dig in, we love him through it, we keep fighting. That’s just what we do.

“They were laughing at me”

We have reached the time of school year Little Man has kind of reached maximum capacity and goes a little off the rails. He’s had a rough week. He’s had nightmares, trouble sleeping, and just less ability to use his tools.

His SAI emailed me yesterday. Something happened in science class. He had an outburst, and then didn’t want to go to class yesterday. I asked him about it….First, he said he didn’t really want to talk about it, but then I reminded him I couldn’t help him, Mrs. E couldn’t help him, if he couldn’t tell me what happened.  It seems he’d asked a kid to leave him alone – I don’t know his tone nor his exact words, but he asked, and the kid didn’t comply. In Little Man’s words, he started to “freak out” and then the kids started laughing at him, which only made the problem worse.

I hate this for him. Teenagers can be cruel. But also, as I explained to him, some people just don’t know how to respond to expressions of emotion, and so they laugh. I’m not mad at those kids….not really. They’re just being normal teens. But my heart hurts for my boy. He’s still working on so many things. And no matter what his chronological age, his emotional and social age is so far behind, and it’s patently obvious.

I’m not asking the teachers nor his SAI to micro-manage every minute to make sure he never has to face this situation. I need him to learn the tools to respond better. Does that make sense? Although I don’t blame him either. It’s a much bigger, much longer learning curve for him. Does it break my heart he’s hurting? Oh my gosh, YES. I’d change all of this in  a heartbeat to protect him from hurt.

He’s cognizant of the fact he’s somewhat different. He’s aware of his deficits. We constantly remind him his advantages and amazing he is.

I don’t know where I’m going with this. I’ve been sitting here, tears rolling down my face as I try to write this. I guess there are just days I really hate his life is harder. There are days I want to curse down autism. There are days I want to put on my Super Mom cape and protect him from everything and everyone. Days like this make me more afraid what he will face in the big world of high school, where his differences may be even more evident, more apparent, and make him more of a target. I guess what I’m saying is my autism momma heart is a little bruised today, and I’m praying for a better day for my Little Man.

I can’t even think of a good title

Good Lord but this week really sucks, and it’s only mid-day Tuesday. I’m beginning to think I need a good, old-fashioned, therapeutic crying jag. I’ve felt on the verge of tears over a week now, which only grew worse yesterday morning with news of the Vegas mass-shooting. I’m just so freaking sad…..

I caught my ring on something yesterday when I was unloading the car from a Costco run. I didn’t notice anything right away, so I guess I’m lucky there. But last night, I discovered one of the prongs around my center stone had completely pulled away, and the whole setting was tilted sideways. So now I’m without my ring for at least a week while it’s being repaired, and getting the appraisal (only five years since I lost and had the center stone replaced). Anyways, while driving to the jeweler, my phone rang.  I recognized it as one of the school district numbers, so I took the call.

How do you lose track of where you are in the school year?  And how do you forget you normally get *this* call this time of year, and have for the last six years? The special ed district admin was calling to schedule Little Man’s annual IEP meeting. Punch to the gut. I’ve been trying so hard to just enjoy being in the good place he’s in this year, and avoid thinking about IEP’s and transitioning him to high school. Life is having none of my denial. It’s not like we haven’t begun discussing it. It’s been hovering there in the background all year. But the high school team – at least part of it – will be at his IEP meeting next month to start the transition process. I’m so not ready for this. As before he started middle school, I’m terrified and anxious of what next year will bring for him, not to mention just making the decision where he will go to high school. Every time I think about any of the options, I have a panic attack. I’d homeschool in one capacity or another just to ease my own anxiety, but I know that is totally not the best option for any of us. Actually going to school, being in those social situations, and dealing with the classroom is a form of therapy for him. And it would just plain be counter-productive for both of us for him to be home all day every day. But I digress….I wasn’t ready for the call to schedule his meeting. I’m not ready for his meeting. I’m not ready to make a decision for him on high school. And I’m certainly not ready for whatever fresh form of hell we’re going to deal with while he transitions to wherever he goes for high school.

My freaking TimeHop and Facebook memories have both been full of photos of the Princess dancing or posts about her dancing. She isn’t dancing at all right now. I don’t know if she will ever dance again. I miss watching her dance. I miss that part of her. I am excited for the new adventures she’s having, and the girls on her field hockey team are incredibly supportive of each other. It just still makes me a little sad……I ran into a mom from the studio in the store yesterday. Just seeing her made me tear up. P’s dancing was more than just her dancing….so many of the parents (and grandparents) became my friends. I miss that little community too. My FIL asked for a photo the other day of P – one of her dancing. Just looking through her dance photos was an emotional haul. I sent him two of my favorites, and felt a couple tears roll down my face. I hate change.

I guess I’m just feeling drained and emotionally overwhelmed at the moment. I know it will get better, but for now, those tears are pretty close to the surface. And that just is what it is……

“Empties”

I started watching the Netflix series, “Atypical” last week. If you haven’t seen it yet, check it out. It’s really good. It’s about a family with two teens, one of whom is high-functioning autistic. Sounds dark, but it gives a great perspective on the reality of life with a high-functioning ASD kid.  It is actually funny, while at the same time, it can be gut-wrenching, particularly as the mom of a high-functioning, ASD teen. It gives me hope for his future as well as makes me aware how long and difficult his struggles will be.

Episode 5 about killed me the other day.  I had to stop it at one point – the neuro-typical daughter was talking about what life was like as the sister to an autistic person. She explained that when she was younger, she would hear her mom talking about her as her “NT” kid (neuro-typical)….She thought her mom was calling her an “Empty” and it made sense to her, because she felt she had to empty herself out in order to make space in their life for her autistic brother, the brother who took up so much space in their family.  I immediately started crying.

Little Man was diagnosed relatively late, at eight years old, but I still feel his diagnosis and subsequent therapies, etc took over our lives to a certain extent. We didn’t stop living, didn’t stop activities for the other two, but Little Man’s autism consumed me, especially emotionally.  One of my biggest fears has been how his autism affects them, what it does to them, how they feel about it.

Big Man and the Princess have not been at the same school with Little Man for years. It’s been five years for Big Man, and four for P since they shared a campus with him. That may change next year, as one of the options on the table for high school for Little Man is their school…..the public, traditional high school just down the street.  We’ve talked extensively about the possibility of him going there…..the worries of him being able to navigate the campus, deal with the number of students, handle the homework load, much less the possibility of being bullied, his differences so obvious. They’ve said they would help him, that they and their friends would look out for him. But what level of that is appropriate to expect of them? At what point do they feel they have to become “empties” so that he might be safe and successful? What is too much to expect?

We may not have to face this issue to the extent I worry about it. Time and his needs may find him at a different school entirely. They are still, however, his siblings. The day-to-day reality of that still weighs heavy on my mind. At what point do they feel they have to become “empties”? I hope I never intentionally lay that expectation on them.

The Year of the Choice

I remember this point three years ago, when Little Man had just started his last year of elementary school. I remember the anxiety I was beginning to feel, knowing we would have to make the decision during that year where he was going to go to middle school. He was in a pretty good place that year, but I was terrified of what was coming, terrified of messing up and making the wrong decision, terrified of the new big bad world he would be facing and its potential for total disaster.

Sixth grade was BRUTAL. We knew it would be, no matter where he ended up. The magnitude of change moving to middle school guaranteed stress, anxiety, meltdown, regression.  I don’t doubt the decision we made as far as where he goes to middle school – it is the perfect place for him. We’ve watched him thrive in the last year, and feel confident he will continue on that path this year. That’s not to say he’s without issues.  He’s been pushing back on doing his work, and on doing his work to his full ability (he’s a brilliant boy).  He’s gotten a little lax, a little lazy.  And, I’m not gonna lie, he sometimes uses his ability to manipulate to get out of things, or delay. So we’ve brought the hammer, because we know we have to prepare him for high school and the expectations that come with that level of education.

I’m trying desperately to stay in this moment, to just relax and enjoy the good place he’s in. But I can’t help the thought from hovering…..we will have to make a choice at some point this year where he will be going for high school. Thinking about any of the options brings a rise in anxiety level for me.  The school the older two go to is huge, and it is traditional….moving classes, big campus, PE for Freshmen, homework loads, etc. I fear the potential for bullying is too big. I get palpitations thinking about him going from class to class, much less making it through every class every day (they block, so Tuesday – Friday, classes are 90-ish minutes long). I panic when I think about him even knowing what his homework is, much less getting it done. And don’t get me started on PE – that’s been the bane of his existence since first grade.

The PBL/math and science high school would be a good fit, but it’s different. He wouldn’t be with his siblings.  And its location requires navigating morning rush-hour traffic in addition to the usual drop-off/pick-up mess. Yes, that one is on me – it’s SUPER inconvenient. Then there are the other options – Classical, Charter, home school (which, quite honestly, isn’t really on the table at all). So. Many. Choices. So much pressure and anxiety.

He goes back and forth between wanting to go to the math & science school, and going to the school down the street with his brother and sister. His class will do high school visits around town in October or November. We have his IEP in November, and a representative from his “home school” will be there.

I feel like I need to meet the special ed teams at each school on the table. I need to know we can work together, that they will have his best interests at heart, that they will protect him, that they will help us get him to the goal of a full diploma with as few disasters along the way as possible.  We  need a school he will keep receiving the services he needs, and that will accommodate him in his particular form of special.

See, this is where I spiral. I’m really trying to focus on the fact he’s in a good place right now, and not stress about what’s coming next year. At the same time, I know how quickly time passes, and that we will need to start these discussions with his teams sooner than later. We basically have about two months to live in the now. Then, we will have to face the year of the choice head-on.

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

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.