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.

Talking to other kids about being autistic

I’d have to say, the calls from school I enjoy the most this year are the ones I get from Little Man’s speech therapist. She has special insight into him, as her sister, about the same age as LM, is also high-functioning autistic. In other words, she gets it. She gets the wins, and she shares them.  I can hear the smile in her voice when she calls to tell me that, while he wasn’t doing art in art class, he was engaging with his classmates, advocating for himself, and bouncing back quickly from a small blip of a meltdown. Yes, she did call me on a Friday afternoon to share that exact thing. I adore this young woman. She has given me the ability to give myself permission to not stress about his academics this year, and focus on getting him settled at his new school with an entirely new team.  Wow, did that sentence make sense?  She’s taught me to focus on the wins, to try not to let the bad days get to me.

She called me again late last week. The autism/autistic discussion had come up in his class the other day.  He openly admitted to his entire class he is autistic (his good friends know, and a couple of girls he worked on a  project with earlier in the school year).  He just said, “I’m autistic, this is what it means, and this is what it’s like.” He shared his life, and the kids were receptive. That’s a brave, bold thing for any sixth grader to do….talk in a classroom full of peers about the ways he is different.

He’s owning it, being autistic. Yes, being the smart, manipulative kid he can be, he sometimes uses it as an excuse. If he scares you, he knows it, depends upon it to get his way. Although even that is a tool in his toolbox – a way of communicating something is going on that’s uncomfortable for him.  But he’s owning it – this part of who he is.  And I’m proud of him.

Yes, that’s what his speech teacher called to tell me.  It was a win, and she felt I deserved to know about  it. Have I mentioned I’m grateful for her?

Given Permission

Little Man’s speech therapist called yesterday to give me some good news and an update on his progress. It seems he’s been fighting against leaving class for his sessions with her (usually Thursday afternoons). In typical Little Man style, if you give him some control over the situation, he will come at it more easily. So she let him choose his time. He decided mornings would be best. She couldn’t believe the difference in him – he was chatty, engaging, witty, funny, cooperative. That’s my boy. By the afternoons, he’s tapped out. All his defenses are down. He’s reaching maximum capacity, if he hasn’t gone wheels-off already. In the morning, he has a wealth of resources and energy. He’s capable of more work then. So he will stay with Thursday morning sessions. She thought I deserved to hear some good news rather than just the hard stuff. Have I mentioned she’s awesome?

This girl comes at autism with experience. Her sister is autistic, and much like my Little Man.  She said something yesterday that just made things click for me, and for LM’s teacher. He’s been struggling with math. His teacher is aware of this. His anxiety is ramping up, making it difficult for him to function during math time. The speech teacher put it this way – Imagine knowing your house is going to be broken into at any moment, while you’re in it. Are you able to focus on anything other than your fear and anxiety about that imminent break-in? No. That’s how he feels in the classroom. He knows something is coming that is particularly hard for him. It’s causing him anxiety and fear, so he’s completely incapable of focusing on a worksheet of math problems. And yet we’re surprised when he starts to cry or shuts down. She said to the teacher and the rest of his team, let’s keep presenting him with the expected academics, but let’s focus on the emotional/social/anxiety stuff this year. This is all new to him – new building, new teacher, new team, new classmates, new routine, new way of teaching/learning. That’s entirely too much new to expect him to function the level he was last year. Let’s give him this year to settle in, get used to everything. The academics will come. He’s never suffered in the past, even the year he spent most of his time outside of the classroom. He’s academically capable. Let’s help him every other way.

I was processing this on the drive this morning. I’ve been getting upset he can’t keep it together all day every day at school. We have him down to a breakdown just once a day, which is a huge improvement. He’s in class more than he’s out of it. I wanted so much for him to just continue the path he was on last year. I wanted him to fit in, not be a disruption in class, not need so much. I recalled this feeling of needing normal – it goes back to when Big Man was little, and I wanted to stop thinking about adjusted ages, potential developmental delays, extra shots and weight checks, starting Kindergarten “on time”. We spent 8 months leading up to when he could have started kindergarten deciding if we would start him or not. I needed “normal”. But we realized his normal was different. And that was okay. His normal was what was best for him, not what it was for everyone else. I’ve never regretted the decision to hold him out a year.

I need to give Little Man his normal, which doesn’t look like everyone else’s normal. I need to be okay with that. His educational experience isn’t going to look like that of a neurotypical child. He’s going to cry. He’s going to have to be pulled out for services. He’s going to have stuff on his desk other kids don’t have, like headphones, a bracelet to indicate his ability to engage, his zones of regulation flip book, his comfort box. He’s going to have extra snacks at school to help him get through the day. And his academic days may not look like that of everyone else in his class. He’s still going to reach the same end-point. He’s just going to do it his way. I need to let go my need for him to follow a certain path. He’s making his own path. While my momma heart struggles with the emotions of that, he will be so much better off if I just let go, and give him permission to do this how he needs.

Don’t think I’m not crying as I type this. It sucks he has to learn to function in a world not designed for him, and it sucks watching him struggle every day to do that. But it will be easier for him if he knows it’s okay to do this his way, not the “normal” way.  If I stop putting those expectations on him, even quietly, his life will be a little bit easier, because if his own mother is inadvertently wanting him to fit in a certain box, how can he expect the rest of the world to accept him the way he is?

Connections

Little Man has had the same psychiatrist since he was diagnosed on the spectrum over three years ago. He has served a purpose, but neither Little Man nor I have ever really connected with this doctor. Appointments felt rushed. And it seemed the doctor just wanted to throw medication after medication at my child. I didn’t feel I could really talk to him, nor that he really heard me (except for the one time I told him LM was melting down during our appointment because we’d waited for over half an hour. We never waited again).

About a year ago, our school nurse – God love that woman! – suggested a psychiatrist a few other students at our school go to and rave about. I’ve had that number sitting on my desk since then, and the to-do item of “schedule appointment with new psych for Little Man” has literally sat on the wall over my head for a year. When I sat down last month and forced myself to get on the phone for a few hours one afternoon to actually work through all those nagging to-do’s, I scheduled that appointment. I was surprised we weren’t waiting months to see her.

Our appointment was yesterday.  I was nervous and hopeful. I prepped Little Man we would have to arrive half an hour before the scheduled appointment to do paperwork. I brought my iPad, my phone, headphones, a snack and some juice, hoping to keep him entertained and somewhat calm. Paperwork finished, our appointment time came and went. Spouse arrived right on time. And then we waited. We waited for almost 40 minutes before being called back. Little Man started to get anxious and restless. His breathing accelerated. Spouse wasn’t happy at all about the wait – he usually gives a 10-15 minute window and then wants to leave. This didn’t seem to be a positive sign. I could feel my hope slipping away.

We were finally called back, and I liked the doctor right away. We were with her for almost 45 minutes. She’s awesome. She endured an ongoing argument between us over medicating for the ADHD and moods. She’s a no BS type of person it seems, and she explained why  and how the medicine helps, a little more about what ADHD is, and then laid a plan out. We talked about what services Little Man is receiving. She was surprised our school is able to provide everything with the cuts the education budget has taken over the years. She suggested a social skills group and then proceeded to announce they actually have one at that office!!!! I’ve been looking for a social skills group (that wasn’t over an hour away) for two years. She also said he could probably use even more time with a speech therapist, which we will look into soon. Of course, we are switching care to her.

The biggest win of the day was the fact Little Man engaged. He answered her questions without being prompted.  He gave input when asked about the medications he takes, and how he feels about taking them.  He talked about who he sees at school, when, and what they do. When asked afterwards, he said he likes her. This is what we’ve been looking for, hoping for.

She gave me hope. She gave us direction, which is something I’ve truly been searching for since diagnosis day.  We’ve found where we need to be for the foreseeable future. I am so relieved. For once, I feel we are getting him the help he needs. Doesn’t hurt she also helped us work through some discussions we’ve been having for the last few years. We’re on the right path now. I can feel it. That doesn’t take away the fact he’s autistic. It doesn’t make it go away. But it definitely makes it feel we’re not alone. We have the right help. Can you see my smiling from where you are?