Monday, January 18, 2010

"I had a scary dream last night," says Sabrina

"What was the dream about?" I ask.

"Me and Max were running, running down a street and Max fell and he started crying and he couldn't get up."

"And then what happened?" I ask.

"You came and picked him up."

Lately, Sabrina has really been wrapping her mind around Max and his needs. She's almost five—an age when, her preschool teacher recently mentioned to me, kids quit being so egocentric and start thinking more about other people. (She is still, however, wearing the same Tinkerbell shirt every single day that says, in gigantic letters, "It's All About Me.") She's been doing more big-girl things, like asking Dave to download songs to our iPod such as "Tonight's Gonna Be A Good Night" (there she is above, playing some sort of game—she's far more adept with Dave's iPhone than I am). The last vestiges of baby-ness are disappearing, though her dimpled knuckles and protruding belly remain. She also can't quite pronounce her th's, so she says "My froat hurts" instead of throat, for example, which makes me smile inside every time.

Despite Sabrina's increasing awareness, she's still mean to Max at times. Her latest tease is, "Max, purple is MY favorite color," knowing full well he's all about purple. Or she'll try to get me to go down to the basement to play with her alone by saying, "Max says he doesn't want to come" when Max has said nothing of the kind because, er, Max can't yet verbalize things like that. She's also tried to convince me that Max has said it's OK if, say, she gets the bigger slice of pizza—even as he's sitting there! She's never yet tried, "Max says he wants the Polly Pockets Cruise Ship Playset," though I wouldn't put it past her.

But she's really beginning to understand Max is special. I'm wondering what sort of questions she'll ask, and what sort of answers I'll come up with. So far, I've kept things simple; once, she asked why Max doesn't talk and I said, "He does talk, he just talks in his own way" and she seemed satisfied with that. I haven't yet had to say, "His brain got hurt when he was born." I get a little teary-eyed just typing those words; hopefully, when the time comes, I'll be able to say them matter-of-factly. I don't want her to sense whatever residual sadness I have about what happened to Max. I just want her to see him as her brother, a kid who may need her patience and her help...but not her translation services.


  1. Barbara from BostonJanuary 18, 2010 at 1:04 AM

    You are such a good mom and you love those two so much. When Sabrina does ask harder questions just talk from your heart. A quick prayer for guidance just before answering can only help. As for your sadness seeping through I don't think that is so horrendous. Honesty beats sugar coating every time. As long as Sabrina is not burdened with the pain you feel you are protecting her and teaching her how to care at the same time. lol

  2. Im so thrilled to learn that a protuding belly is a sign of youth!!! (You wrote "babyness" but I don't want anyone to think it's a sign of a different kind of babyness). Suffice it to say, I'm still a kid, if you ask my belly!

    And even if it's mean, I think its a great sign that Sabrina tries to manipulate things and take advantage of her younger sibling...seems about as "normal" as you can get (My big sister was mean to me!!)

  3. Kids have a way of figuring things out. Sabrina knows that you worry more about Max, she is surely aware that you have moments of sadness and concern, too, and this awareness probably motivates some of her questions.

    I don't go for the "Explain every detail, Force the kid to be more adult than they need to be because they can 'handle' it" school of thought, but answering questions when asked in a simple, basic way isn't a bad idea. And even if you get a little teary, you'll put it in context...and you'll cross that bridge just fine when you come to it.

    I think it's a hoot that she teases her brother so cleverly--I couldn't get away with that when I was a kid! Much, anyway!

    They grow so fast. TOO fast. Enjoy these days with your dimpled, baby-bellied little love! And her big brother, too!

  4. Wow, this makes me cry. Our kids are the same age and in the same situation. I can't say anything else today.

  5. It can be a good and bad news for "typical" siblings. My girls (11 & 9) have a love-hate relationship with their brother (7 - ASD, non-verbal). Luke is maturing, which helps alot. It also helps that the girls can now stay home by themselves for short periods of time (e.g. grocery shopping). They are old enough that they get embarrased by much of his behavior.

    I would encourage other parents with typical sib(s) to check your area for SibShop -- a kids support group. It has really helped by girls.

  6. I have always felt that children can be so intuitive sometimes. Even in her dreams, Sabrina is trying to help Max. And while she may give him a hard time while she's awake, that's just typical sibling rivalry. It's obvious from that dream alone, that she loves her big brother a lot.

  7. Ellen -- I think a simple description about why speech is so much harder for Max would be helpful. When Ben was little, sometimes one of his caregivers would answer the question re "why doesn't Ben talk" with "he does, in his own way," but that never satisfied kids because he didn't talk like them. They needed to understand that Ben knew what he wanted to say, but his muscles wouldn't listen (or something like that). And then we'd talk about other ways Ben could communicate (e.g. pictures, sign, etc.)

  8. When the time comes, you'll figure out what's best. It's what parents do.

  9. Like many things with kids, I think the knowledge comes over time, and with lots of questions along the way. With Reilly and Foster having different conditions that manifest in similar ways, I spend a lot of time trying to get them to understand each other. I'm not sure when or how the questions will come from Sophie and Finn. Maybe when Sophie hits kindergarten. We'll see...

  10. This post is so good and complex. Thanks for sharing it and your feelings.

    On another note: watching the golden globes last night and seeing all of the purple gowns - all I could do was think of Max!

  11. Anat Baniel believes that you should tell your children why they are in phsyical therapy--starting with simple explanation when they are young and moving to more complex ones as questions come up. Sounds like you're having to do the same thing for a sibling. Seriously, where is the handbook for all this stuff?

  12. Hi Ellen,

    I was wondering if you've read 'The Brain that Changes Itself' by Norman Doidge?

    If not - it's about brain plasticity, throughout life. A really interesting read, and something that might be relevant to Max's development?

  13. Sabrina is such a great sister. She clearly cares very much about her big brother and is concerned about him.
    I can vouch for the person above me who mentioned The Brain That Changes Itself. I bought a copy per the recommendation of Daniel's OT, and it is really wonderful. I highly recommend it to any loved one of a person with neurological damage.

  14. Such a great post -- it has it all. Humor, sadness, hope -- very moving and bittersweet.

  15. Max is very lucky to have you both. I bet Sabrina is going to be exactly the sister that Max needs and you will find the right words to help her. No worries.

  16. You're doing a great job of just letting it develop. In time she will have it all in the perspective she needs for her own survival. And who knows, maybe one day Max will give her the purple if he can have the bigger slice of pizza.


Thanks for sharing!

Related Posts Plugin for WordPress, Blogger...