Is it fair?

I was talking with a friend the other day about where Little Man will go to high school and how it might be if he goes to the same high school his siblings attend. I have a huge hangup over putting responsibility on them to take care of him and look out for him. They’ve had five and six years of being at a different school, without him impacting their school days, who they are at school. They didn’t ask for a special needs sibling. And I just get scared of putting too much on them where he’s concerned. But my friend said, “He’s their brother. It isn’t too much, it just is.” And then we both started to cry.

They’ve had freedom for a while…freedom from being the autistic kid’s sibling while at school. How will it affect them to have him on the same campus, especially when  he goes sideways (because he will), or decides to hide rather than go to class, or he starts crying in class, or runs out of class, or gets bullied? I won’t be there to buffer nor to manage him.

I don’t even know if this makes any sense, my fears and concerns. On the one hand, I would be so relieved to know he has people who know him and love him there on campus helping to keep an eye out. But on the other hand, ugh, the responsibility. They’re teenagers. They have enough on their plates without having to help him through each day at school. Would it kill their social mojo? Distract from their own priorities?

He has been around some of their friends. Most seem to take him in stride, but he can sometimes be a lot. He’s been fairly manic lately, swinging in seconds from really up, to really pissed off or sad. He’s loud. He’s  intent upon talking about what he wants to talk about. He still struggles with social cues. He wants to be part of things, but he doesn’t always know how to do that, and then sometimes being part of what’s going on is overwhelming to him no matter how much he wants it. Sometimes he is just the annoying little brother, which is normal, but which is also a little bit more difficult for him to understand.

I do, since Saturday, keep going back to what my friend said, “He’s their brother. It isn’t asking too much. It just is.” Sigh….would that this were all easier, and I didn’t have to even have much less process these worries.

That’s not how this works, friend

So, we have a chore chart in our house. It hangs on the fridge in the kitchen, and kids’ jobs rotate every week. They do everything from feeding the dogs and taking out the trash to sweeping the pool and helping with dinner. They earn points for each chore completed, and, if they earn enough points (we have three levels), they get rewards. We’ve had this chart forever. What is changing is the enforcement for Little Man, and oh, he is so not happy.

I will admit – I’ve let him slack on a lot of stuff. I try to be tougher, but sometimes it’s just easier to do it myself than deal with the battle. Here’s the thing, though….after three full IEP evaluations, which each have included testing for PE as well as time with the occupational therapist, we know he is fully physically capable of everything his siblings are capable. He can do it all, he just doesn’t want to.

Last night, we had a full-blown battle over putting dinner away. He and Big Man got into it. I told him, under no uncertain terms, he is fully capable and therefore is fully expected to complete all his chores, unassisted and without accommodation anymore, no arguments. He threw a fit. It didn’t help Big Man was kind of being an instigator, but when Little Man said something derogatory to me, the discipline came down hard. Oh, he was so not happy.

Here’s the problem with high-functioning autistic kids…..they are entirely too smart for their own good sometimes. He can, and he will, manipulate. Now, every time he says he wants to hurt himself, we take his words seriously, within context. So last night, he used those words again, even texting his friend – with whom he knows I’m friends with his mom – that he was going to hurt himself. Multiple texts later, I was angry. I knew he wasn’t going to hurt himself. He was using that as a threat to get me to give in. I called him on it, and said never again will you use those words unless you seriously mean them. I let him know that under no circumstance was he to use that to manipulate anyone or any situation ever again.

I will not allow him to use his autism as an excuse to get out of anything. I’m sorry, bud, but you are totally capable, mentally and physically, of feeding the dogs, cleaning your room, emptying the trash, unloading the dishwasher, clearing dinner, sweeping the pool, and helping put groceries away. And when you do something wrong, willfully, you WILL get in trouble, and you will take the consequences without threatening self-harm.

I will not allow him to manipulate to get out of doing things he doesn’t want to do, or to get us to cave on consequences. Is it a fine line? Certainly….because we know there’s so much co-morbidity between diagnosis for people on the spectrum, anxiety and depression are just part of life. And we do know he HAS meant those words before. And I am absolutely terrified that someday he may hurt himself. But I still will not let him put that in his toolbox as an avoidance or manipulation tool. That’s not how this works.

This may sound harsh. Trust me, I’ve done battle with myself enough times over it already. What is comes down to is, yes, he’s autistic and that means he has a certain level of disability. But we won’t let him use that as a crutch to get through or out of things he is fully capable of doing.

Duck!

I’m not talking about duck as in a bird. Nor am I telling you to duck. You know what autocorrect does to a certain word? Yeah, that.

I wrote about the kids laughing at Little Man last week.  He’s been reluctant to go back to science class since. I’ve seen the return of all his aversion techniques…going to the nurse’s office, leaving class to go to his quiet space, outbursts, tears, meltdowns. Friday, the nurse called about an hour after school started. He was in her office with a headache that wasn’t getting better. He had fallen and hit his head on the ground at soccer practice Wednesday night, and although he’d had no symptoms since then, she didn’t want to take any chances. I brought him home.  He was fine all weekend, outside of a meltdown Saturday  morning over getting woken up to get ready for his soccer game. It wasn’t pretty, and lasted about twenty minutes, but then he was perfectly fine at his game as well as the rest of the day.  He was great on Sunday – no meltdowns, no outbursts, no physical complaints.

An hour into the school day Monday, the nurse called me again. He was back in her office with another headache, and would I bring him some ibuprofen so we could try to get him through the day. So I took him some ibuprofen. Two hours later, I got another call. He was back again, the headache wasn’t any better, would I come pick him up. Back to school for the third time that day, and I brought him home early.  Yesterday, he made it the entire day (I’d told him that morning I wasn’t coming to get him early at all), but when  I picked him up, he told me he’d “freaked out” at recess, that kids were laughing at him, but he couldn’t tell me what the situation actually entailed, nor what had happened before or when the kids started laughing. He could not talk about it without getting really upset.

I emailed his team last night. Something is going on, and it’s affecting him intensely. His SAI let me know they’re aware something is happening and they’re looking into it.

Today, Little Man called me. I was in the middle of work, and asked him to ride it out for a bit, see if his headache got better. He called twenty minutes later. I took him ibuprofen again, and, as I had to leave town for work, told him he’d have to call Dad if anything else happened. Not to make it sound like I put work ahead of him…..I’d never do that if I believed in that moment he was dreadfully sick or really needed me, and only me, to come get him.

My phone rang while I was driving. It was the school counselor. Little Man had spent much of the day with her, most of that in tears. He’s unable to verbalize to her what’s happening when the kids are laughing at him. And he told her it would be better if he weren’t alive anymore. Dear Lord. My breath caught. I explained we do take him seriously, every time he says this. We can’t not take him seriously, but we also know he learned those words are a ticket out of whatever situation he doesn’t want to be in. It’s a very fine line to walk. I ducking HATE this. I hate it. I hate that he hurts. I hate he can’t tell us why. I hate we can’t just snap our fingers and make it better. I hate the anxiety, the social deficits that make him reach this point. Duck! DUCK! DUCK! DUCK!

I did ask if we could add speech therapy back to his repertoire. I feel he needs help with pragmatics again, as social situations and dynamics have shifted over the last two years. His peers are in an entirely different place, and they are very aware his issues, which are once again much more obvious. And we know how very mature thirteen year olds are. We’re also going to call his old outside therapist and see if he can have some sessions with her. The problem with that is he doesn’t want to talk when he’s supposed to talk. Does that make sense? If it’s on his terms, he *might* talk. If it’s a scheduled thing, he’s more likely to push back and shut down. DUCK!!!

I’m exhausted. I’m fearful for my boy. I’m emotionally tapped. I feel I have to be with him all the time, have to be on my guard all the time, have to utilize everything I have in me on him. Which then leaves the question, what do I have left for Spouse, for his siblings, for my friends, for my job? How is it fair to any of  us, much less Little Man. DUCK!

My heart just ducking hurts.

Wait, he wants to do what now?

First off, I have to acknowledge Three’s a Herd just hit 725 followers!!! I have to thank each one of you for reading, and clicking that follow button. I know I haven’t been as consistent in writing posts this year, but y’all have stuck with me. When you put your life, your thoughts, your words out there into the world, you wonder if one person will care enough to read, much less continue to want to read what I have to say. It’s humbling to say the least. I know I’m not some amazing blogger with a gajillion followers, but it makes me smile, makes me feel our experiences are making a difference (or making you laugh at our hot-messedness) every time I see someone new has clicked that button. So THANK YOU!

So, my carpool partner texted me Monday to let me know her oldest son would be trying out for the running team on Wednesday, so Little Man would be a little late getting home as she wouldn’t pick up til tryouts were done. No problem, and I thought, “Wow, cool, a running team at the middle school! Awesome!” and then I put it out of my mind….until Little Man was frantically digging in his backpack, looking for a form I needed to sign THAT NIGHT so he could tryout for the running team on Wednesday. Uh, what? He wants to what?

Even before we knew of his autism, we knew Little Man was not really an athlete. Oh, he’s perfectly physically capable (three evaluations with the adapted PE teacher reinforced this idea), his other stuff holds him back. And he just doesn’t really care about sports. He played Little League for three years. He played soccer for five seasons. Then we were done. Peace out. Not for him. He was fine with it. We were tired of fighting the battle, and, as I’ve mentioned before, it became something of a safety issue.

Now, he will run in PE at school. He’d rather do that than participate in any group activities. He’s not fast, but  he will do it. I just never thought he’d do it willingly, outside of the PE requirements for school. We’ve fought over PE with him since kindergarten basically. If I recall correctly, at least one of his IEP goals is strictly regarding PE participation. So when he said he wanted to try out for the running team, I was stunned. Maybe I shouldn’t have been…he had already surprised me recently when  he agreed to play soccer this fall. But still….running….on a running team….with running practices…and races against other students….Soooooo out of his normal realm.

Maybe this is just more evidence of how far he’s come over the last couple of years. Maybe I should stop being surprised when he says he wants to do something he’s pushed away for years. He’s changing. He’s maturing.

He did text me early yesterday afternoon, saying he didn’t think he wanted to do the tryout.  I asked him why. He said he didn’t think he would own up to it. I told him he had to stay anyways to wait for his friend to finish the tryout, and the carpool pickup. I also told him I thought he would surprise himself. He reluctantly agreed to do the tryout.

Who knows if he will make the team. He isn’t fast, unless he really wants to be fast. On one  hand, I don’t care if he makes the team….he tried out. That’s a huge win right there. If he does make it…..oh lordy…..it will be so good for him, such a learning experience. And it will prep  him for high school in so many ways. For that, I do want him to make the team. It would boost his confidence so much. It would give him another outlet. It would take him away from his screens for that much longer, expose him to another social world, push his envelope.

You  know the best part? His behavior….his changing who I thought he was is normal teenage behavior, whether he realizes it or not. Regardless, it’s a win. We’re kickin some autism ass this year.  Amen.

“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