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.

IEP processed

Little Man’s annual IEP meeting was almost two weeks ago. It’s taken me a bit to process, mostly because I had other things going on…work, a trip to see my parents, Thanksgiving….I had to process it all anyways. I had to go back through the details, not in-the-moment.

Someone asked me about it, what happens, how did LM handle being in the meeting. I explained, “You spend the first five minutes hearing the ways your kid is amazing and how he’s improved. You spend the next hour discussing all his deficiencies, and making plans to help him.” Truth. That’s what goes on. You know what? I almost hate those first five minutes more than the rest of the meeting. Look, I know all the way he’s amazing. I have to make myself focus on those amazing qualities in the moments he’s completely falling apart, or pushing me over the edge, or having the mother of all meltdowns on the sideline of  his soccer game. He is amazing, brilliant, beautiful, witty, funny, empathetic, entertaining, cuddly, loving, and just….amazing. I’m his mom. I know this. I know they know his abilities, his strengths. It just always makes me feel like I’m holding my breath waiting for the “but…..”

So yes, he’s doing better with his collaborative work, although he still needs work. Yes, he’s very creative. Yes, he’s gotten better at communicating his needs. Yes, he has become a mentor to kids in younger grades working with the 3-D printer. His writing has improved. Can we please get to the hard stuff? The stuff we really need to talk about? The things we need to work out?

I knew he’d avoided going to class for some time when he was dealing with some bullying and then his perception of everyone around him – and their actions – went sideways. I didn’t realize he’d hardly been in class for nearly a month. His grades suffered accordingly – but WTH? Nearly a month not going to class? This is a small school with a small campus. There isn’t really anywhere for him to hide. I do know we dealt with the headaches and stomach-aches for over a week. I know he spent a good amount of time in the nurse’s office. But really, nearly a month hardly being in class, because he wouldn’t go. He ended up with two F’s, three C’s, and one A on his report card. My kids have NEVER gotten an F, much less two, on a progress report much less a report card.

The adaptive PE teacher on consult for him told us she’d have to hunt him down most days when it was time for PE. Again, WTH? They shouldn’t have to go look for my kid. He’s 13  years old.  He’s an 8th grader. The school is small, the campus is small, but you had to go look for him? Then he wouldn’t cooperate nor participate much of the time. So our PE goals remain intact. Get to PE, and participate to a percentage level.  He has a new sheet he has to fill out in which he earns points for showing up, participating in the activity, or running.

Most of his goals remain the same…..working cooperatively and successfully in groups, getting his work done, staying in the classroom, self-management, responding appropriately, stating verbally his feelings and needs, and showing up for and participating in PE.

I do feel like it is a team. We all want what’s best for him, and to best prepare him for high school and beyond. Then we had to start talking about the transition to high school. No, we haven’t decided where he’s going. We have narrowed it down to a few schools, one of which is very difficult to get into, one of which is lottery, and one of which is down the street.  The rep from the traditional school down the street was there towards the end. We had to talk about what potential issues he might face at that school.  PE is a big issue. I get massively twitchy when I think about it. I can’t picture him having to dress-out, in a locker room with a bunch of other, neurotypical 13 and 14 year old boys, can’t picture him participating, or possibly even showing up. I worry about him showing up for any class after the way this Fall has gone.  We won’t even discuss homework, or him staying in class, or him even looking like a typical student.  I just can’t.

I wasn’t entirely impressed with the HS rep. Her responses to some of our requests, and some of his particular issues, almost made it sound like she’d never had to manage or process a kid like mine. Didn’t give me much confidence. I know she won’t be directly involved in his day-to-day if he does go to that school.  We asked about preferential period selection for PE. She’d never heard of that before. We asked about supervision or a different changing location, or only changing his shirt rather than his entire outfit (he wears sweatpants most days anyways), and she responded as if no one had ever presented those options before.

Here’s the deal – he WILL get a full high school diploma. He’s capable. We will not settle for a certificate. That’s going to stand no matter where he goes to high school. Maybe that’s a lofty goal that is going to take a ton of work, a lot of meetings, and a billion emails and phone calls. Whatever it takes, it is going to happen.

So, back to the IEP meeting…..I left kind of numb. There was too much to think about, too much to process. There are many good things he’s done, many great ways he’s improved. There are many things he needs to work on. There are things to be concerned about. My stress over the high school selection, and how he does in high school is straight up through the roof.

One day at a time right? Be where we are, deal with where we are. What’s next will happen when it happens. How do I feel about this IEP meeting? Well, I’m good with the goals we set. I’m not sure how much success he will have achieving those goals within the next seven months, but that’s not really the point, right? The point is that they’re goals for him to work on, for us to help him work on, goals to help make him successful in school, in life. Good did come of it in that it led to good discussion, and Spouse was involved. We have had multiple discussions with Little Man.  He is mostly staying in class. We’re working on the rest. He’s a brilliant boy, with a brilliant mind. Someday, the world will be built for him, he will find his people, his corner of success in his way.

We have things to think about, more meetings down the road, particularly once we decide where he’s going to high school. For now, I’m going to take a deep breath, and be happy I don’t have to think about IEP’s for a little bit.

Almost forgot….How did Little Man do, participating in his own IEP for the first time? He didn’t want to go, and he did push back all the way up to the point of walking into the conference room. He didn’t say much, and we did have to tell him a few times to sit up, get his head off the table, but he was there. He didn’t yell, he didn’t complain, he didn’t growl.  He was there until we started talking with the high school rep and released him to go hang out with his friends at the lunch tables. He did it.

Therapy

Little Man had intense, one-on-one therapy for over a year when he was first diagnosed on the spectrum.  He reached a level the services at school were sufficient and we were moved to an as-needed basis with his therapist. He hasn’t seen her in nearly five years. But given the changing social dynamics he’s encountering, the fact high school is looming, and because of his heightened anxiety and thoughts of self-harm the last month or so, we decided it was time to add his private therapist back into the max.

We saw her this morning. I’d forgotten how calming she is. Her voice and manner put me to ease immediately. She’s the perfect level of letting him wallow in his opposition, while at the same time insisting upon certain behavior. She remembered him, remembered our family, and while not happy for the circumstances, was happy to see him again and hear how he’s doing. He refused to talk or answer any questions initially, but about twenty minutes in, we were talking about high school and he joined the conversation. It was fairly easy for her to dialog with him after that.

He asked to see his school therapist once as week in addition to his outside therapy. That’s not something he’s expressed before, but hey, if he wants it, I’ll ask for it. We have his IEP meeting next week – he is required to become part of that process now – and we want him engaged, accountable, and to contribute by stating his needs and wants. This was a good first step towards that end.

His therapist asked why we were there. I told her the discrepancy between his social and emotional skills and that of his peers has widened to a very obvious place once again. We want to help him bridge that gap. Also, the anxiety and depression levels have risen in the last couple of months – we’re seeing a return of the anger and tears to a place we haven’t dealt with in a long time. And then there are the thoughts of self-harm. He needs an outlet, a safe place to talk. Therapy gives him that. Thank God for good therapists.

So we’ll add this back into our routine, once a week, for a couple of months and see where that puts us. I just need to know my boy is okay, and on a good path, with good tool in his toolbox that he’ll actually use.

 

Let the Research Begin

Little Man is rumored to have done well on the high school tours field trip yesterday. I’ve had two good reports, and he was all smiles and conversation when I picked him up from school. So, yay for that. And now, the research begins.

He did like the Math & Science high school. He would like to put his name in the lottery for admission. I’ve reviewed their website and the paperwork they sent home. One thing caught my eye – Special Education support programs will be limited. I’m not exactly sure what that means. Do they not take IEP kids? How would my kid navigate their campus and curriculum if they don’t have the supports he needs? They have a few informational meeting dates coming up, so we’ll go to one of those and get some answers. While the school sounds fairly similar to where he is for middle school, I won’t give up the supports he needs. That one little line on the informational packet makes me say, “Hmmmmmm.” He also liked the school down the street that his siblings attend. He said they had the best presentation, and he got a flower from the agricultural department during their tour, which he was super happy about and proud of.

We do have a lot of options available in town. I just really haven’t wanted to think about this process. I’d love to stay in denial-land just a little bit longer. Unfortunately for me, the application periods are opening, and we don’t have forever. So let the research begin. Sigh…..

High School Visits

Little Man has a field trip today. His class will visit all four public high schools in town. They call it “Jump Aboard.” I am freaking out, just a little bit.

Field trips for him always give me anxiety. He hates the bus. It’s loud, it’s out of routine, the kids are usually over-excited. It’s always been a trial with him, since Kindergarten. Then there’s the process of getting him through whatever they’re doing. He took his headphones today. I’m not sure if his SAI will be with him or not. Every time I think about him navigating four high school tours without losing it, I twitch. I’ll be on high alert all day today, until I pick him up this afternoon.

The other reason I’m freaking? This just makes it more real the fact we are at the point I’ve been trying to put out of my mind the last couple of years. We have to choose where he’s going to be for the next four years. We have to figure out what environment is going to best suit him and his needs. I haven’t wanted to think about this. I want to stay in the land of denial, and in the relatively-comfortable zone we’ve found at his current school. They know him. They know how to handle him. They know his quirks, his needs, his anxieties, his amazing mind.

I look back three years ago when we started this decision-making process for middle school. I remember how stressed and anxious I was. I remember my fears and all my worries. I know we made the right choice for him, that it all worked out, and that this too will work out, and someday I’ll look back on this time and wonder why I was so very anxious.

We want what’s best for him. We want him to be happy with the decision, and to buy into it, so he will be part of the process. Today is the first step on this new part of his journey. So, yeah, I’m a little freaked.

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.