I am still a firm believer that whoever decided we need to change the clocks twice a year need to live with a person with autism for a week after their decision and see just how much it messes up lives. It’s been a rough week here (and I’ve heard from other moms that their weeks haven’t been very good, either). I wish I could completely blame our week on the time change, but unfortunately, I think it’s more that I missed signs that Rob and Casey needed help.
I mentioned last week about Casey’s behaviors being out of control a few evenings and that she is just on edge. She is doing better, but is still fixating on things. She wants laundry done every day. She wants her PJs in the bathroom as soon as she gets up in the mornings. She is getting up in the middle of the night to put the clothes she is planning on wearing in the bathroom. It’s been getting worse and I just missed it.
Rob has been slowly changing. He’s a louder at home and needs his verbal stims to calm his anxiety. Unfortunately for the rest of us, he needs to yell some of his phrases at certain points. He’s anxious and obsessed about getting things to cut and rip up which caused issues at his day hab. He wants tight hugs – and to be left alone. And it all happened so slowly, I missed it.
I’ll admit – I’ve been too focused on my own grief and the pain in my foot. I just missed the signs that Casey and Rob needed help, especially Rob. Yes, he got louder, but it didn’t seem to be too bad. Casey is more obvious when she needs help – Rob withdraws. And I didn’t see it.
After the issues at his day hab, I realized that he has been struggling for weeks, too. He may not be able to voice his grief and anxiety about losing the baby, but he feels it – and he definitely knows that I’ve been crying. Everyone around him has been upset for over a month. He is so sensitive to what people around him are feeling – I was just dumb for not realizing he was feeling it, too. It breaks my heart that I didn’t realize it. If it hadn’t been for autism, he would have been able to share his feelings. And some days, autism just sucks.
At their last doctor visit, we made the decision to reduce meds for each of them. It was the right decision at the time and they were doing well. We lost Raylan less than two weeks later. I should have immediately bumped their meds back up, but honestly, I just didn’t think of it. I didn’t think of much of anything that week but just getting through. I couldn’t see Mandy and Cory (no visitors at the hospital) and they were all I could think about.
A few days ago, I put them back on their full doses of meds. Casey said she was okay with her little pill, but I can see she isn’t. While I know it takes a while for Rob’s to build back up (and his reduction was much larger than hers!) he seems more like himself already. He is sleeping better and that will help if nothing else. He even happily put on a new shirt (a hoodie – I haven’t seen him in a hoodie since he was a little guy!) and smiled for our family pictures yesterday. He even seemed to enjoy it.
I’m sure we still have some rough times coming, but I do think this is the best for both of them right now. I can try to reduce their meds again in January or February, when life settles down a little and our loss is a little less painful. Trying new doses or medications is never a favorite or easy thing to do. It’s so hard to know if any changes that are seen are from the medication or just life itself. It’s always a guessing game – a gamble. But one that is necessary in our lives.
I know many people are completely against giving their child medicine for behaviors or anxiety. I understand that, but – would you withhold medication for a heart problem or diabetes? It’s the same thing – their body needs help and as their parent, you need to understand that your child on medication is not an issue of bad parenting, but rather a body that needs help. I am in no way saying medication is always the best choice, but if you have exhausted every other option, don’t refuse to consider it.
Casey and Rob are both happier when their meds are working. They both know their pills help them and will just stare at me if their pills aren’t ready for them at the expected times. They may not be able to verbally tell me, but their actions let me know. And that’s all I need.