Watching Nathan’s progress is like peeling away the layers of an onion. Every week now I feel like a new little piece of him is showing itself. Some things only John and I would notice, like when he went running at John with the remote the other day shouting “baby baby” and it turned out he wanted the dino episode with the baby dinosaurs in it. Or when we were going through the Chick Fil-A drive thru and I asked him if he wanted chicken or he wanted fries and he said drink. (Independent answer to a question, not even one of the options presented, yet relevant). But the change is there.
The interventions remain intense. And incredibly draining for me. I would do this all over again, every single day of work is worth it, and I am putting on a brave face day to day, but the truth is, I am exhausted and very burnt out. I cry at the drop of a pin and adding one more stressor just pushes me right over the edge. Such as when I drove Jack to camp and discovered he had a field trip we knew nothing about (which is fine except he needed his “uniform” and I needed to drive back like a bat out of hell to get it there in time) or when the melatonin was missing at bedtime. And that was just in one day. Both of those incidents provoked tears- such small stuff. The problem is people don’t realize just how on edge I am. I have gotten pretty good at doing my crying behind closed doors and not dumping my problems onto other stressed out individuals. The unfortunate result is that no one knows I am having a hard time, and no one asks. I feel alone, and on top of that, because I seem “together” I find myself a shoulder for others. And I want to be there- and yet right now- I am honestly all tapped out. The amount of work that I have to do with the boys at home is just so incredibly overwhelming.
Stress definitely exists in layers, much like Nate’s autism symptoms, only mine are building as his are peeling away. At the core is the stress of knowing my children have these difficulties and will face challenges throughout their lives- this never ever goes away. And as one moves outward, there are the financial stresses of autism, the time stressors of autism, my job, Nathan hitting me and my fear that it will get worse as he grows, my marriage, everyone else’s problems, my daily housework, the kid’s minute to minute medication needs, my relationships, and finally if there is any room, that really thin layer that goes rotten and falls off first is my well-being.
Yesterday I woke up with blurred vision and intense pain on the left side of my head. Although bad, this is usually the type of thing I just push through. After I got Nate off to school, and Jack off to camp and was trying to sit through the pain and wait for the medications to kick in so I could get to work, it hit me. I have not allowed myself a sick day or day to myself for that matter in over a year- every single day has been for a doctor appointment for the boys, or a sick/snow day for the boys or for another member of my family who needed me. No wonder. And that’s with at least 3-4 headache days a week. No wonder I am at my wits end. So yesterday I allowed myself a bit of a nervous breakdown. I can’t say I really feel “better” today- maybe slightly less tired, already looking forward to our home visit with the DDA this week to be placed on their wait list to hopefully get some financial assistance somewhere sometime in the future. I guess the point is that I finally did it for me. If I don’t do that every once in a while, I AM going to break.