Summer Camp

When the kids were little, we started putting them in summer day camps – typically at the Y, and mostly to keep them occupied, surrounded by other kids, learning to learn from other adults, and, to be quite honest, to give me a few hours of respite from three toddlers. As the years went on, summer camp became tied up in whatever sport they were involved in at the time….soccer, golf, dance……Last year, Big Man went away to Mammoth for a few days with the cross country team to train at altitude. Two years ago, the Princess spent two weeks in Orange County at a summer dance intensive.

We’ve had a much more difficult time with Little Man as far as summer camps go.  He did the Y one year I think.  Once he was diagnosed on the spectrum, I struggled with putting him anywhere. We had a disaster of a Lego robotics camp a few years back. I ended up pulling him out a couple days before the week was out. The instructors just didn’t have it in them to deal. I lost patience, and a bit of faith.

Last year, we found an amazing camp nearby. Well, one of my close friends found it online and sent me the link. Right away, it sounded perfect for our guy.  It’s was a coding camp…five days, six hours a day, of working with technology, generally through gaming. I won’t say he had a perfect experience – autism did still rear its ugly head a few times. But the director and instructors were willing to work with him. Not to mention, he wasn’t the sole high-functioning kiddo there. We were super impressed. Much more, he made one  very good friend he still keeps in touch with.

I started getting emails for this summer back in January. Originally, they weren’t going to have any sessions at the college nearby (a ten minute drive), but rather down in San Diego (45-60 minutes each way, depending upon traffic). I didn’t think we were going to be able to manage the logistics.  But then a few months ago, they did open sessions at the nearby campus and we signed him up right away.

This is the week of camp. He was anxious but excited yesterday morning.  He was talking about the programs he thought they might be using, really looking forward to learning.  But when I picked him up, the director said he’d had a bit of a rough afternoon. It is a LONG day – 8 hours to be exact. That’s a lot for him. Little Man wouldn’t even talk about what he’d done all day until a few hours after he got home. I do think he ran out of fuel, and lost the ability then to self-manage.  He was happy to go back today, waking at 6:30, and announcing, “Day 2!”.

I texted the director a bit ago, just giving him some hints and tips for dealing with Little Man. He responded right away, letting me know things were going well today, and that he was appreciative of the input.  Again, I’m sure our son isn’t the only spectrum kid they’re dealing with. He can’t be. But if you know one kid with autism, you know one kid with autism. They’re just as different from each other as anyone else.

I’m not picking him up today, as I have a work event, but I’m still anxious to hear how his day went. He is doing something he loves, so hopefully that keeps the issues to a minimum. And on Friday, we’ll get to meet his instructors and classmates, and see what he’s been doing all week.

In the pit of my stomach

I have that ball again…the ball of stress sitting in the pit of my stomach. Ugh. It doesn’t feel good.  Tears are close to the surface. Anxiety is rising. I hate this feeling.

I’ve been operating under the mode of “No news is good news” this school year. I haven’t been getting phone calls or emails from school as I was last year. That’s good, right? We’re six weeks into the school year, and there hasn’t been a need for an emergency meeting with his Special Ed team. This is all good stuff. I know it’s good stuff. But that apparently doesn’t mean Little Man isn’t going sideways at school.

His SAI sent home a story the other day. It’s Little Man’s social story for his school day. He’d pushed back on reading it with her the other day, so she wanted me to read it with him. As I read it, I realized all the things he’s not doing each day, all the behaviors and responses he still needs a lot of help with. It made me sad, and it stressed me out.

He’s in seventh grade. His social, emotional, and classroom behavior is more like that of a second grader, on his good days. How the heck is he going to be ready for high school in two years? He can’t even get through one lesson without wanting to get out of the room and do what he wants to do. He is so focused on getting to his desired activities. I have no clue how he gets any class work done. And let’s not even talk about working in groups without yelling at a peer. When I think about him in a high school classroom, I lose it. I automatically think he’s never going to be capable. Then I wonder just what we’re going to do when we reach high school. The amount of development and learning between now and then is beyond overwhelming.

I think I need to break his story down for me as well as for him. We need to focus on one skill/behavior at a time. I’ve asked them to push him this year, but we still need to not overwhelm him or push his anxiety level through the roof. There are days I wonder if he has time to learn the actual curriculum.

I think I’ve detached myself this school year. Last year was just so intense, I had to take a step back. But I suppose it’s time to re-engage, to check in, to push him a little bit myself, and to once again focus on making sure he’s learning now, as well as preparing for high school two years from now.

Summer, Unmedicated

I’ve been asked frequently lately how summer is going for Little Man. My fast response is, “Great!” but then I usually end up qualifying. I decided, about a week into summer, I wasn’t going to fight it. He had a miserable year much of last school year. We’re both exhausted. So he’s pretty much been allowed to do what he wants to do each day, which involves a lot of screen time.  He isn’t just playing video games, nor watching YouTube videos of other gamers playing video games. He’s been making his own videos, and creating a lot on Minecraft and Lego Create.  And he’s not by himself – our house has been boy-central most of the summer, with two particular friends hanging out nearly every day. So he’s engaged, and he’s happy. I do force him out of his comfort zone on a fairly regular basis, but I haven’t rocked the boat much. We’ve spent five days in Palm Springs, gone to the movies to see Dory (more on that later), taken a few beach trips.

He asked to go off his ADHD meds for the summer. I didn’t think too long about that one. His ADHD is completely different from that of his brother, so it’s not a huge deal to leave him unmedicated when he isn’t expected to focus on classroom schedules, rules, and activities. He’s at a critical growth point, too. Taking him off the meds leaves his appetite at that of a normal 12-year-old. He is more outgoing, engages in more conversations, unmedicated. We’ve had multiple comments on it. That kind of hurts. Here’s why – when he has to focus for hours on end on something other than his screens, he is incapable without his medicine. Also, what most people don’t see is his struggle to maintain his emotions without his medicine. Yes,  he’s more outgoing, talking more, but there are also more tearful sessions, more angry outbursts. He goes swings from one end to the other on the emotion scale within seconds. I see it, because I’m with him 24/7.

So his summer has been pretty great, 90% of the time. He’s had lots of sleepovers (all here, though as he still doesn’t like to spend the night at someone else’s house). He’s had a ton of friend time. He’s in his element – and I have computer parts and screens and cables ALL OVER my family room. But  he’s happy, content. I’ll take that. In a few weeks, we will have to start re-focusing and preparing for the new school year. Until then, he eats, he plays, he talks, and he’s unmedicated.

“It’s SO Annoying!”

Ah yes, these were the words of the Princess in a conversation she and I had last week, with regard to her older brother. We were talking about the fact people just like him. He walks into a room expecting everyone will like and accept him, and guess what, they typically do.  I can see why that would be annoying to her. He’s a likable guy.  He doesn’t have to work very hard.  He’s charming, engaging, emotionally empathetic; he connects easily with all types and ages. There’s just something about him that people find approachable, easily-liked, easy-to-connect with.

It’s not that the Princess is a B. She totally isn’t – she’s sweet, funny, compassionate, engaging, and just plain nice. But she’s a girl. And girls are not nice to other girls. So there are girls who don’t like her, for whatever random reason. I think you’d be hard-pressed to find a girl who can walk into a room expecting everyone to like her, and they do. Girls are snarky and competitive with other girls. It just isn’t going to happen.

I’m glad that she admires this trait  in him.  I get her envy of it. I too find myself wishing I had a tenth the social confidence he has. That’s not to say he can’t be shy and insecure. I see those things in him as well. But that’s entirely different than this.

I do think his NICU time helped create this quality in Big Man.  Maybe some of it was already in him, but I believe being handled by so many people every single day the first three months of his life just got him used to engaging.  The fact he’s so emotionally in-tune is to his advantage as well. People get when you’re  picking up on their cues. He definitely does that.

So yeah, it’s SO annoying that EVERYONE likes him, but it’s pretty awesome too.

Guess who went over 500 followers over the weekend???!!!!! Thank you so much! that totally made my weekend!

This is why we don’t get comfy

I thought Little Man was doing better at school. It really seemed he was doing better at school. Less and less unfinished work is coming home. Three days out of five, he comes out of school with a good report, a smile on his face.  He seems more relaxed.  The anxiety level at home is less than it was at the beginning of the year too, outside of the homework debacle of a couple weeks ago. But then the phone rang on Tuesday. Yeah, suck it, we’re totally not in the clear.

He started crying in class the other day and went to his SAI’s office for a bit. He pulled it together after about five minutes, and went back to class, but was back with her within half an hour. He told her he’s really anxious, feels like he’s in a hole he can’t get out of. His being sick week before last did not help his situation at all. It spun him into something of a depression, and definitely higher anxiety. Add to that being pulled from class frequently for all the evaluations for his tri-annual. The kid can’t catch a break. And then he has to deal with  having me for his mother.

I’ve let scheduling an appointment with a new counselor slide. I KNOW  he needs to talk with someone, and he needs new tools, social skill development. Half the things that come out of his mouth are what I would call “snarky”.  I know he yells at kids at school frequently, whenever they’re being too loud or are just irritating him (in his perspective). That’s not going to win any popularity contests.  I’ve failed him. I know he needs this, but I get complacent when things seem to have settled. Sigh. Sweep it under the rug and maybe, just maybe, things will go back to how awesome they were last year.

I’m just tired. And I’m frustrated. I haven’t been great in my responses to his challenges. It’s hard to tell sometimes if he’s manipulating, intentionally being a jerk, or if his behavior in that moment is out of his control. I want a crystal ball or mindreading skill to be able to figure it out correctly every single time. There are days I just don’t have the energy to face it. Then I lose it, and I yell or I cry, which totally does not help, and I know it, even in the midst of whatever’s happening.

He is doing better. It is relative. He’s not as bad as he was a month ago. But I know there are things I need to add to his repertoire of therapies, help I need to get for him. Today is just one of those days I’m wondering why this has to be so hard? Why did God entrust me with this child? And are we all going to survive?

Evaluations and Assessments

As I mentioned last week, it’s tri-annual year for Little Man’s IEP. That means evaluations and assessments across the board, with essentially every member of his team. Have I mentioned he really doesn’t like changes to his schedule and routine?  I had two phone calls today, one from the school psychologist, and one from the speech therapist. Both said he’s given some push-back. He doesn’t like being pulled out of class, particularly if it isn’t part of his regular schedule. They have figured out he is much more cooperative and willing if they get him first thing in the morning. He’ll go in for his last speech evaluation half an hour before school starts Thursday  morning.

I go back and forth on this. They want him at his best. I mostly do as well, but then I also want to make sure they’re getting a true picture of who he is and what he’s like at every point of the day.  Double-edged sword. I need them to see how awful it can be. But I also need him to be cooperative and engage so they can complete the evaluations and assessments.  It’s a conundrum.  We’re all working it out.

I finally pulled open the parent forms yesterday.  Two of them were pretty easy, although having to fill them out still sucks because they clearly point out his challenges and deficiencies.  But I can circle and fill in dots like a champ. The third form had me stumped as soon as I got past the question of who lives in the household and how old is each person, along with are his parents married or divorced/separated and have there been any traumas within the last year. I reached the Academics section and was immediately stumped. I had to put it away. How do you define your goals for your child’s education? I know how to answer that one for my neuro-typical kids…..do their best, graduate with grades good enough to move on to college. While we fully expect Little Man will go to college – he’s fully academically capable – his education involves so much more. And it seems his academic strengths have changed. I’m not sure I even know anymore.  What do I want for him? What concerns me? What helps him? What doesn’t help him? How do I define his social struggles within three lines, and my concerns for his social abilities in two lines?

His IEP meeting is November 30th. That’s not far away.  I’ve made it clear I don’t want to lose any portion of his services before his next tri-annual, which will be during his Freshman year of high school. Thus far, they’ve heard me. I am already dreading it though, that meeting. I try to keep emotion out of it, but I’m his mom…it hurts so much to have to sit there and discuss all the ways he needs help just to get through a school day, much less get the same education as his siblings and peers.  I hate having to talk about him saying this is too hard and he doesn’t want to do it anymore.

I haven’t finished the form with all the blank lines. It has to be back to them by next Wednesday. I think I’m going to have to do it in small increments, take my time. It’s a bit overwhelming as a whole.

Stop looking at me that way

I get it, a lot…that look…the one quite obviously asking, “Are you really going to let your child behave that way?” Trust me, if I had a choice, it would be anything but. Ah, the joys of parenting an autistic child.

He lacks social grace. Of the eleven goals currently on his IEP, no less than five involve social behavior.  We’ve been working on these skills intently for nearly four years.  He is better at it than he was four years ago, but he still has many moments I have to give the look back that says, “Yes, I’m completely aware my child is being an a#$ right now.” If it makes other people uncomfortable, which I can see it does, multiply their feelings times a billion and that’s close to where I’ll be on that scale.

Here’s what happens – if you talk down to however old you think he might be based upon his size, you’re lucky to get a rude look. He will usually growl.  He definitely won’t respond to you. If he’s not in the mood to talk, or doesn’t deem your question worthy of answering, you might be able to hear his eyeballs rolling to the back of his head, or, again, the growl.  Greeting people, ordering food, acknowledging someone has said something to you, saying thank you when someone has given you something or done something nice for you….those are only slowly working their way into “normal routine” for him. Most of the time, he must be reminded. I noticed in his classroom “contract” a line about just saying “thank you” or “thank you, that’s nice, but I don’t really want that right now” when a classmate makes something for him. I assumed there was an incident prompting that line, and I cringed in embarrassment, knowing exactly how that had probably gone down.

I believe he sees words as a commodity. He won’t use them unless it’s necessary. He still communicates, just in his own way. Sometimes I try to explain that to people. Sometimes, I just let it lay.  Sometimes when those awkward situations happen, I will bail the person out. Sometimes, we muddle through, and I let them think that yes, I am that awful mother letting her child behave like a total punk while I stand there watching. Sometimes we get a person who’s been around autistic people before, and a light will go on. They get it. And they give me the look of, “It’s okay, mom. We’re good here. I understand.” I like those people.