New Skin

Picture this: I am sitting in the middle of the boys’ room at 4 a.m. sobbing. Yes, both boys are also quite upset, but it’s now been three hours of this crap and I am tired, so tired. And really, all that is left is either to run screaming from the house or cry.

When I was in my early twenties, I had — like many a 20-something — a crisis of identity. Who was I now that I lived on my own? Who did I want to be? Why was I so sad all the time? What did the future hold? Well nearly four years of therapy later, I felt much better: living will do that to you. By the time I was in my thirties, I had my feet firmly in a career, my own apartment, my own life. I liked who I was and, more importantly, I knew who I was. I felt comfortable in my own skin which only made things easier when I married a man who felt similarly comfy.

I thought about this last night as I tried every tactic I could think of to get first John, and then Sam back to sleep. I thought of the woman I used to be and wondered what had happened to her skin — why did it feel so foreign, so unfamiliar? Why did it feel like I was watching myself from above? Why do I feel so disconnected? Could I possibly be having another identity crisis?

This morning I realized, with the clarity that can only come after going 24 hours without sleep, that I need new skin. I need a tough new skin, one that will see me through this transformation into an Autism Mom I can feel good about. Because, really — I am so not there. I am mad at Autism all the time. Right now, it is not some quirky cute thing that makes me smile. It’s not just “who my boys are.” It is what prevents John from looking at me, it is what makes him jabber to his hands and not hear the rest of us. It is the loud shouting he’s doing at 2 a.m., 3 a.m., 4 a.m., wearing down my very last nerve.

And yet? And yet. There are moments, rare moments, when John will come up to me and hold my eyes like he’s seeing me for the first time…the smile that spreads across his face is like sunshine on new-fallen snow. I could burst from hope. And the joy with which Sam wakes spelling: “C-A-T. CAT! B-U-S. BUS!” The funny turns of phrase he’s started with, the fact that he’s actually reading, and I think, Yes, we’re going to be okay. I can do this.

I’m growing my new skin.

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  • In her book Making Peace with Autism, Susan Senator says that one of her cardinal rules is to “not feel bad about feeling bad.” I think it’s really good advice. Most of us feel bad sometimes. We cry, we yell, we think there is no way we can do this. And then the sun sets, and it comes up again, and we haul ourselves out of bed, and we see a ray of sunlight, and we find that little piece that we can do, and somehow we keep going. But beating ourselves up for feeling bad in the first place is just setting us up for a fast downward spiral.

    I always try to keep in mind what RDI founder Steve Gutstein says – “this is not a sprint; it’s a marathon.” If you start out the race thinking about mile 26, it’s hard to keep going.

    So (and I know this is easy to say from the other side of the computer screen), be gentle with yourself. You’re not just an “autism mom,” you’re also a “twin mom,” and my hunch is that there are a lot of twin moms out there who are experiencing the same kind of emotions you’re talking about even though neither of their kids has a developmental disorder.

  • This post brought me back a few years as I thought about myself sitting on the boys bedroom floor crying in the dark as Roo was wide awake and how much I hated autism then. You will grow thicker, tougher skin and you will figure out how to get through these times. But like Mom-Nos says, don’t be so hard on yourself, you have double the work with your TWO little boys. Know that we are all here for you and keep writing, it helps.

  • Your post makes me think of a line that keeps popping into my head, “Is this really my life?”
    I have twins with autism?? And not the eccentric, fascinating high-functioning autism that the kids in the inspiring books all seem to have.

    Right now, I’m realizing I’ve got to sometimes pay other people just to let me get away from my situation. Could you possibly stay in a motel at least a couple of nights a month? As my sister said to me, “Having a sane mother is probably very valuable to them.”

    By the way, I did start a blog, as you suggested, but I have to admit I haven’t gotten comfortable enough with it to put down my darker thoughts.

  • Not much to really add to what the visitors before me wrote. They are right. We all have our up days and our down days. It is okay to feel overwhelmed.

    I am so thankful that we can share our stories with each other. Very few of our family members or friends can really understand what autism brings to a family. That is why this cyber support group is so amazing.

    Hang in there. Tomorrow is another day!

  • You are doing a great job, you have a lot on your plate so give yourself a break. You are an amazing woman and I give you many kudos for all that you are having to cope with each day. Take a break whenever you can and I agree with mom-nos to never feel bad about feeling bad. Don’t forget that we are all here for support.

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