Team Shimmy: 3/15/15

Someone recently asked me how Laura and I were doing and I couldn’t find the words to articulate exactly how hard things feel right now. Yesterday, an analogy came to me.

It’s like we are a forest and for years we worried about loggers coming in and clearcutting, about big dramatic shifts in our landscape. Now it’s like we have termites. The slow, steady, grinding gnawing of the residual fear and the current struggles with Simon’s many delays has left big pockets of weakened, broken places that we aren’t quite aware of, or can ignore, until too much pressure gets applied in just the wrong spot.

This last week we both found ourselves crumbling a bit.

For starters we are feeling half-dead from sleep deprivation. Simon has been averaging wake-ups at least 5 nights a week. This means he comes into our room sometime between 1:30 and 4 a.m. and one of two things will happen. If I’m feeling like, “THAT’S IT! We have to break this pattern and get him back in his own room!” I will take him back into his room where he demands that I sleep with him in the twin bed. This process often takes a full hour, which usually involves me contorting myself into some quasi-comfortable position next to him until he falls asleep. Then I haul myself over him to sleep in the equally uncomfortable twin trundle, praying I didn’t try too early and wake him up and have to start all over again. Laura can’t do this b/c the bed hurts her back so much that she ends up non-functional the next day.

If I’m feeling desperate, I leave him in my spot in our bed and go try to sleep in his uncomfortable twin bed alone. I usually find myself unable to fall back asleep for 45+ minutes. Laura is kept half-awake most of the night from Simon’s twitchy body pressed against hers. If Simon doesn’t wake up, then one of the dogs does or one of us just spontaneously wakes up and can’t go back to sleep for hours. It’s a recipe for…well…feeling like life is just kinda crappy.

We have tried melatonin and homeopathy and white noise and none of it makes any kind of considerable difference for Simon. He used to be on an appetite stimulant that made him sleep better, but we discontinued that about 6 months ago b/c he doesn’t need it for eating anymore. We are going to try to cut out the small amount of ice cream (never a chocolate or coffee flavor, but still sugar) he eats before bed that is a hold-over from the calorie-pounding days and see if that helps. We will also talk to his ABA team, but we’re currently focused on a program to let us cut his nails (after ditching the haircutting program for a while b/c we had a major setback with our last haircut).

The hardest part with Simon right now is that he is 100% inconsistent. In any given moment, you don’t know who you’re going to be interacting with. Sometimes it’s a cute, quirky, cheerful almost 7-year old who can put his shoes on by himself with only 3 prompts. Sometimes it’s a totally irrational tantrum-throwing two year old who can’t tell you what set him off. Sometimes it’s a kid with the communication ability of MAYBE a 15 month old. You can cycle through all three in a single interaction. I can already hear people, “but my 7 year old does this too!” It’s not the same. I promise. Even our ABA therapist has days when she’s like , “Wow. Just wow.”

Examples:

Last night when I was trying to get him to sleep, he wanted me to hold the back of his head. I asked him if he had a headache. He said yes, but he says yes to almost any question you ask him so you can’t bank on his answer actually being true. I then tried to ask him if anything else hurt, naming specific parts. I asked him what he was feeling. I asked him if he felt sick. I asked him if he felt lonely. Nothing. Not a single answer to any of my questions. It’s like he didn’t hear me.

In frustration, I tapped him hard on his shoulder and said his name loudly, in an “I’m trying to get your attention” voice. His response was his typical, cute, friendly, almost “Scooby” sounding “Huh?” Like he really had no idea I was talking to him and just realized I was trying to interact. I almost screamed in frustration. Instead, I took a deep breath, gave up on trying to understand what the problem was and lay there praying we would have some hope of getting a few hours of sleep. After over an hour of him awake, he finally fell asleep and then it took me another 20-30 mins. He woke up again at 5:15, got into bed with me and we slept until my alarm went off at 6 am so I could go to the gym. Thankfully I didn’t wake him up b/c that would have meant 30 minutes less sleep for Laura. I’m exhausted just typing this.

More communication potholes: Last Thursday there was a miscommunication with our respite worker and she thought Simon still had his “privileges” suspended (ie, no TV or iPad) as he’d had them taken away the last time she was there. He, of course, freaked his freak because he was pissed that his fun stuff was taken away for no reason. Instead of being able to say anything related to that, when our ABA therapist showed up to be with him at Hebrew School, he was still so enraged that he refused to participate in anything and talked about wanting to blow up the school. She, of course, was slightly alarmed and texted me towards the end of the class saying things were not going well and that I might want to come get him early. Upon arrival, I tried to check in with him about what was wrong, why he was upset, etc, but got nothing. Just more surly. It took a series of texts with the respite worker to piece together what had happened. Of course this also triggers fears about really bad stuff happening to him at the hands of other people and not being able to get any information about it. *hurl*

These days it feels like NOTHING is fun or easy. Nothing. It’s probably the sleep deprivation talking, but it’s hard to shake that feeling. Almost every ordinary thing we have to do with Simon is a grind. He still can’t dress himself without a massive fight 95% of the time. Changing activities can cause a melt-down or he can’t stick with an activity for more than 5 minutes. Yesterday morning Laura took a super sweet photo of Simon and I in the kitchen as we were baking “together” to make muffins to go give out to strangers near our house as a Random Act of Kindness. She posted in on Facebook and it got a bunch of likes.

All I could think was “Don’t believe this lie. This was not a sweet, family bonding experience. This is one of those FB posts all the memes reference that trick you into thinking someone else’s life is better than yours while the reality is someone is crying inside” . I know. “Bitter, party of one, your table is ready”. But seriously. Behind the scenes this is what was happening:

I asked Simon if he wanted to make muffins (ala The Great British Baking Show) and when he said yes, I was so excited I jumped up and prepped the ingredients. When it was time to start, of course he didn’t want to. After we cajoled him, he came into the kitchen but just wanted to watch. Fine. I kept trying to invite him to do different parts and he finally started to help but got frustrated in about 2 seconds with stirring and then didn’t want to help at all, so then I was in the kitchen and Laura was having to watch Simon because he can’t be left unattended without having a temper tantrum/destroying his room/ending up in a hideous mood for 30 minutes. I just ended up feeling guilty that ONCE AGAIN Laura was “on duty”. We actually had a great time giving the muffins out, but nothing about the process leading up to it felt fun or easy.

The other piece is that my Mom has been out of the country for the last 6 weeks so we haven’t had our regular weekly date nights and our respite workers have had to cancel about 50% of the time on the weekends, so it’s not a total surprise that I’m feeling surly myself. My new project is to find something that brings me joy and DO IT.

The one good thing is that Simon’s eating is going well (he’s kinda got a little bit of a gut going these days!) and he is loving Kung Fu which he does 3 times a week. It’s the one area where he can sort of focus and I’m so grateful to see a glimpse of capacity to stay mostly with a group of peers. The majority of the time he is still a happy, giggling little boy who loves anything having to do with guns, battlefights and, at the moment, pirates. Mommies are struggling to battle the termites but the kid seems to be doing pretty well, despite us.