One day at a time

Having a rough time around here these days. I don’t post much about the extremely difficult times parenting an autistic child can bring, in large part out of fear that I am invading Bede’s privacy, but I don’t want to mislead anyone into thinking that it is all roses here all the time.

In the last month Bede has had difficulty regulating his sensory needs and has been mentally and emotionally inflexible. It started with the toilet woes we experienced. I thought it would improve once it was fixed (ish) but it has gotten worse. He is having meltdowns several times a day and sensory seeking in very problematic ways. He’s biting the skin off of the soles of his feet. He’s unable to move past things without a lot of upset for all.

I’m really worn out.

Usually, he goes through a period of dysregulation and then has an enormous developmental gain. Kind of an autistic quantum leap. The last time this happened he learned to use the toilet consistently, began wearing clothes and taught himself to transliterate Arabic and Hebrew. I told a friend today that he was in safe mode, where none of the network settings are right and the resolution is all weird. But soon he’d reboot and be a whole new version of his OS! She said I was a nerd. I don’t know what will happen this time. I have a feeling it will be a good thing overall for Bede but is so hard for him right now.

When you live this life that I live you have to learn to let go of your expectations. To be pleased when something changes in a positive way and not dismayed by it remaining the same or regressing. I’d say it’s very Zen if I knew what that meant. But I don’t.

I’m still learning to let go of expectations. A while back I let go of the one that said my oldest son would do anything more than what he can do today. I try to be just fine with Bede as he is right this very minute; if he doesn’t change I’m okay with that.

That took a long time to be okay with.

Now I have to learn to let go of another expectation, ironic in light of the first: that Bede will always be the way he is today. Because the other side of that first expectation is the assumption that there will only be stasis or forward motion, no backsliding. We’re backsliding here. I knew intellectually that that’s very common in autistic children but I wasn’t ready for it.

So anyway, that’s where we are, and why I’m quiet. Trudging the road of happy destiny and loving my beautiful kids where they are, all of them.

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8 thoughts on “One day at a time

  1. thank you for posting this. not, that you did it for *me* or anything… but I just mean I really needed to hear that. Eva’s been regressing. i keep hanging on waiting for that normal leap fwd into some new level she’s never been… but i find myself losing hope. then i feel guilty for having expectations. she’s having a harder time with life than I have seen in a long time and it has me really feeling confused, hurt, sad for her and for her, and frustrated at myself for wishing she was anything else than what she is.

    it’s hard posting about it b/c you don’t want to disrespect their personal privacy, but you also dont want others to thinks it’s easy. seriously for a long time i found myself jealous of you b/c it seemed you always knew what to do with Bede and you seemed so proud of him… an I never knew what to do with with or for Eva to make her happy and I was having trouble feeling “proud” of her. but I have grown up a lot since then. my priorities have changed and i also realize you’re life can’t be perfect and that though you don’t mention it too much on here I”m sure you have plenty of struggles. I don’t know anyone else IRL or online with a kid with severe SPD, autism or anything like it so I need all the encouragement i can get. I guess it just helps to know other mom’s struggle with their feelings and that it doesn’t make you a bad mom. yk?

    anyhow, thanks… and hope it was ok to say all that.

  2. ((((Phoebe)))). Kudos to you mama! He’s got the best mom a kid could ask for! Sending prayers your way!
    Your post reminded my of a quote I heard earlier this year ( and I don’t know where it came from)
    “Knowledge is learning something new every day. Wisdom is letting go of something every day.”

  3. Thanks for this very timely post. I especially appreciate the last line, loving your kids, just where they are. Sometimes I don’t think people realize just how important (and how hard) that can be.
    xo xo

  4. Timely indeed. Glad to read that someone else eats the soles of their feet! Funny how we [I] always think nobody else does that / experiences that….

    It’s a tricky one – people always say a lot about ‘having high expectations’ for all our children. I don’t know how to get the balance right between accepting what is and also celebrating the extra bits that arrive from nowhere.

    Happy holidays to you and yours from me and mine.

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