The parental continuum

August 27, 2009 at 6:19 am 6 comments

     I’ve written a lot in the past about the stages of grief when dealing with a diagnosis of any sort for a child. Having experienced both medical traumas along with the developmental challenges, I can say the medical traumas were more immediate and frightening while the developmental ones still sometimes keep me up at night.

     However, I suspect for a lot of us, there comes a time when we pass through something akin to acceptance. There are frequent blips back to denial and anger smattered in there, but for me, I’m mostly hanging out in the land of “what is” these days. It’s not that I’ve given up and stopped trying to give C the tools to make his path in life that much easier, but I think all parents do that. And it’s not that I think there’s nothing left we can do to make C healthy and happy. We’re doing that too.

     I suppose I’ve just settled into being a parent, and a parent to this child in particular. I remember once talking to the parent of an adult child with autism, and she (so haughtily, it seemed to me) smiled knowingly when I told her about doing hab work and supplements and a zillion therapies. “Oh yes,” she said, “I remember those days. You’re still in that period of frantically trying to do everything you can thinking your time is running out.” 

     I was moderately offended, even after I realized she was right. I didn’t really need to hear it at the time, and if I could have the conversation to do again, I’d remind her that at one point she was in the same place I was. We all go through that; the initial stage of late nights, plugging in every keyword from the neurologist’s report into google trying to find something that will explain what is happening. I’ve been through the constant therapy appointments, driving six hours round trip once a week over two major mountain passes simply for feeding therapy. Couple that with OT, PT, ST and hab, and we had a full load for awhile.

     Now I’m sort of between the Mom who seemed so condescending and the Mom I used to be. Somehow, where I am now is not quite so frantic. So harried. So wearing. There are still days that seem like they will never end, and there are still tears of frustration at times. But for the most part, there is more calm. I’m not googling all the time. I put on jewelry and sometimes even make-up. The all day sweats and ponytails, while still present sometimes, are mostly behind me. I even have some friends that have nothing to do with special needs kids. And sometimes, we don’t even talk about our kids at all. 

     Just like our spectrum kids, I don’t suppose all of us parents have landed in the same place on the continuum. I hope when I get to the place that Mom before me was, I’ll remember what it was like to be in the thick of things with my kid and be empathetic to those in the trenches. But I’d also like to tell the parents coming up behind me that they’ll get here too, eventually. Maybe not at the same time or place that I did, but the peace will come. I promise.

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Entry filed under: autism. Tags: , , , , , , , , .

Color blind Foiled again

6 Comments Add your own

  • 1. Good Fountain  |  August 27, 2009 at 8:26 am

    What a great post! I really like the way you framed it all up. I feel like I’m still in the trenches because with Charlotte just entering Kindegarten, i feel like I’m at the bottom of this learning curve called “school.”

    I’m glad you’re feeling more relaxed and at peace. Living any other way is no way to live.

    Reply
  • 2. therocchronicles  |  August 28, 2009 at 6:43 am

    I am looking forward to that peace you speak of. I can see it in my future…someday. I’m not as grief stricken as I used to be but it still hits me HARD more often than I’d like.

    Reply
  • 3. Marcy  |  August 28, 2009 at 7:05 am

    Beautiful post Darcy! I am right there with you at that in between, “what is” stage, but I certainly couldn’t have put it into such articulate words myself. Really well done! I have no doubt your empathy will help others today and in the future. Keep this one with you “Best” posts. (I’ve been meaning to email you, but it’s been a busy week. It’s coming!)

    Reply
  • 4. Robin :)  |  August 28, 2009 at 12:24 pm

    I am right there with you, sister.

    At a reunion last weekend, I was re-introduced to an old classmate who has a daughter on the spectrum. This father is a year past her diagnosis (she is 4), and when he heard that I had a 10-yr-old son, the first thing he said, enthusiastically, was, “And, have you recovered him?!?” Fresh from a DAN! conference and brimming with the exuberant expectations and hope that I also had when my son was four, he just expected me to say “Yes!” I had to tread very carefully in explaining what our life is like now. Trying not to be that cynical parent you met. No, not recovered. Yes, we tried that. And that. Yes, still trying that. No, not recovered. He wasn’t ready to hear that things are different now — my attitude is redefined. We are still, as you said, doing everything we can for him, but our hope for the outcome has shifted ever so slightly. New parents can’t hear that yet, their hope and drive helps to cover their grief. I like it better where I am now, most days. It feels more sane to try to connect to my son where he is, instead of where I wish he could be.

    Reply
  • 5. pixiemama  |  August 29, 2009 at 5:50 am

    love.

    Reply
  • 6. Michelle - Nathan's Mom  |  August 30, 2009 at 10:16 am

    What a great post! I think it’s alternatively great & too bad the conversation you had with the autism mom. Good because now you understand how to talk to the parents in the “frantic” stage and too bad that she couldn’t affirm how tough your struggle was at that point. I think we must go through frantic so that we can get to acceptance and finally peace.

    Reply

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