Drawing the line

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One of the things I find myself doing often, as Avery’s mom, is trying to sort out where to draw the line on things. Ordinary, everyday experiences take on a new complexity: Is this because of Down syndrome? Is this a regular, run-of-the-mill parenting experience? Is this simply my problem, or is it a real issue?

As you might guess, I have more to say. I write about it in this week’s “A Little More” post at ParentDish.

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20 thoughts on “Drawing the line

  1. This is SO familiar. We’ve kept our daughter’s hair long specifically because her Dad thinks short hair might look institutional.

    However, unless it’s woefully inappropriate (shorts and sandals in the snow), I let her choose her own clothes. She prefers shapeless clothes: sweats, tights, oversized T-shirts (despite a closetful of fashionable, adorable clothes ). Sometimes she looks like a ragamuffin, and I cringe, afraid it adds to the general not-typical look. But it’s more important to me that she feels in control of her life and learns to make her own decisions.

    We struggle over the juice thing too. She will NOT drink water, and she gets dehydrated, and her lips peel off, and she’s horribly constipated. We watered the juice down, adding more water each time, in the theory that eventually, we can leave it out. Nope. She probably gets a teaspoon or two of juice in a 6-ounce glass, but if we leave it out, she stops drinking liquids. We finally gave up on that battle. (She drinks an appropriate amount of milk, but will not replace her juice with milk either.)

    Anyway, I think you’re doing a fine job. You gotta let him roughhouse until HE says it’s too much.

  2. Thank you, Pam, and it’s so good to hear from you, and you never ever ever bug me!

    I love the idea and will get a post up soon…

  3. Hey….Bugging you again…..

    I just wanted to tell you that I tagged you on my blog. You were the first person I thought of.

    I know you will have some amazing things to write about with this tag.

    I know, I know, I’m a pain…… 😉

  4. I appreciated this post. I worry the same thing about my twins. I’m a little paranoid about people thinking “She can’t handle two autistic toddlers”, so I try harder to have them looking well-dressed than I might otherwise.

    Although on some days, I am just trying to get out the door with everyone clothed and fed!

  5. Mmmm….I can so relate with the no shoes thing. Rhett hates socks and shoes. I went to the store last night and he had on his long pants, long shirt, and jacket on.

    But…

    He was bare foot. I had a blankie that I wrapped around them as we walked in, but he pulled it off as soon as we got in the doors. The greeter looked at him, his feet, then me and rolled her eyes and turned away. First I was upset about it, and I thought for sure she was assuming that I don’t take care of him.

    Then I thought, Eh, who am I to judge her, didn’t she just do that to me and I felt awful?

    I know I am a good mom to him, and I know that he is loved beyond belief, so that is all that matters.

    Good job with not giving in on the juice thing. I would have taken one little look at that little buddah belly and been a goner!!! 🙂

  6. thank you for putting a lot of my thoughts down in words! I’ve often felt like I put too much pressure on Kayla, and myself, for her to behave “perfectly” in public because I think if she isn’t behaving, or just being a typical kid, people will notice and think she’s acting that way because of Ds and not because of her age…but then it’s not right to expect her to never misbehave either, kids do that, it’s a fine line to figure out!

  7. Well, I think the negotiations ended in a draw. Avery did another foot stomp and decided that he wasn’t thirtsy, afterall…so we both won, or we both lost, depending on how you look at it!

  8. i think that letting him makes the decisions is the best thing you can do for him. let him be like his brothers!! you really make me think though…… i plan to raise mayson just like her other siblings!!
    how did the juice negotiations come out?????

  9. I so appreciate your post. Just yesterday Polly and I were at one of her million doctor’s appointments. We had been running late and it wasn’t until we got there that I noticed her hair was a mess. I am hyper sensitive about this stuff b/c I don’t want people to think that I neglect her at all. I have much to learn about that balance.

  10. Thank you for reading, everyone! It makes me really happy when something I write inspires other posts…in fact, it’s one of my favorite things about blogging!

    And too, it makes me feel so much better to learn I’m not alone in having these kinds of thoughts…

    So, again, thank you!

  11. I swear you crawl into my head when you write these wonderful excerpts!
    LOL – I saw Sue just said the same thing basically! LOL!
    I feel too that the simplest thing can take so much longer with Matthew sometimes. And it’s so hard to change their minds, sometimes, on choosing a better choice than juice.
    I too worry more about if his hair is presentable, if his clothes are clean, about how bruised up he is at the moment. I don’t want anyone to have any reason to think him anything other than cute, KWIM?
    And I too find myself cringing when he is rough housing with his brother, or trying to jump over the curb. What if he gets hurt??? But I try my very best, too, to let him be and just hope for the best.
    I think you’ve inspired me to do a post on this today too…
    Have a great week, Jennifer! 🙂

  12. Oh yes, the fine balance between encouraging growth and rewarding typical but inappropriate behaviors. Thanks for the thought provoking words today. It is a delicate balance each day, for sure!

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