Monday, March 18, 2013

A different kind of special needs: Helping siblings of kids with special needs

"You care about Max more than you care about me!" has become one of Sabrina's favorite phrases. This is both because she wants attention, and she feels Max gets more of mine. Every single time she says that, I am reminded that she has special needs, too.

Sabrina knows I write this blog for other parents of kids with special needs, and she has her Love That Sabrina blog. We often go on Mommy and me outings, ditto for her and Dave. She's gone to a couple of Sibshops sessions, and I plan to send her to the next one in our area. I am very aware that siblings of kids with special needs can be sensitive to the attention their brothers and sisters get. A friend of mine who has a brother with autism once told me how resentful she was of all the attention he got growing up, and I've never forgotten it.

Max does need major attention—with bath time, bedtime, mealtime, climbing, going downstairs, handwriting, grasping objects and numerous other things requiring fine-motor skills. He usually feeds himself these days, a major accomplishment. But food sometimes still dribbles out, especially soup. He loves the stuff but it's the worst consistency for him. Anything too liquid-y is hard to retain. We sometimes add rice or small pieces of tofu, but he often likes it straight up.

Sabrina and I have talked about Max needing help with stuff. But she's 8.

And so we were at a sushi restaurant this weekend and Dave was spooning miso soup into Max's mouth and Sabrina started getting pouty. And so I said, half-jokingly, "Would you like a bib, too?"

And she said "Yes." So I put one of Max's Cars paper bibs on her.

Then I asked, "Do you want me to feed you some soup?"

And she said "Yes!" So I spoon-fed her soup as Dave spoon-fed Max soup.

She ate her sushi (Philadelphia Roll) by herself. But then she decided she wanted to be a "messy baby" when she had her mochi (a sticky-rice concoction with ice-cream inside).

When we were done eating, she walked over, sat on my lap and snuggled her head into my neck and we just sat that way for a while.

She fell asleep as we drove home. She still looks so baby-ish and delicious when she sleeps, and my heart went mushy.

I don't have all the answers. I can just keep talking to her, give her as much attention as possible and hope it sticks.


  1. Looks like you are doing a great job! As the (single) parent of a special needs child, I have always been aware that the physical demands of her needs detract from her brother who is very mature and independent. It is tricky but I hope he grows up caring and compassionate rather than resentful of the attention his sister gets. Thanks for this blog. This was a great entry!

  2. As the older sibling of a sister with Down's, I can appreciate what its like to feel left aside, and the jealousy of not getting as much attention. It's something you struggle with, the knowledge of why they get more attention, but still wanting to have as much of it yourself. As she gets older, and learns to appreciate what you do, all those extra things you do to make her feel special will be greatly appreciated!

  3. I recently wrote about something similar, my fear that Boo's needs will begin to weigh down Allie's love for her. Allie is 9 and so far no resentment. However, I have noticed that she becomes 'demanding' of attention. I think you have the right balance and patience.

  4. My brother and sister (when she's here)say that teasingly in an effort to get our mom to do what they want every time they say something like that I say "that's not true" and I feel so guilty.

  5. I think taking your cues from her as you seem to be doing is the right method. I know Picasso was jealous of the attention paid to Spiderman before he himself got sick and now he gets it.

  6. My 4-year-old just got a kidney transplant two weeks ago. She came home from the hospital still in miserable pain, requiring 24/7 attention, and this will be the case for a while. My 7-year-old has been handling it as well as she can, but she's having her moments of meltdown. She's worried about her sister, but she also resents all the special attention (and gifts) she's getting. I am heartbroken with guilt for both of them. I am hoping it gets easier as the little one gets stronger.

  7. Try, try, try to make it up to Sabrina. I've no doubt that she'll say she's fine, even if she isn't. Read "The Normal One", a non-fiction collection of essays about growing up with a "special" sibling.

    You will spend inordinately more time with Max, Max will take up an inordinate amount of your family's resources and Sabrina will be expected to just deal with it. It isn't fair. It isn't right. There's probably nothing you can do about it, but any efforts you make will offset the chance that she grows up and resents the hell out of Max.

    And yes, I grew up with brother with special needs who took up 99.9% of my parents time, effort, energy and attention. Chronologically he's 30, cognitively he's maybe 9 and has been grabby in a creepy way since puberty. Intellectually, I understand it isn't his fault but you spend half your adolescence being grabbed by your brother and see how YOU like it. I send birthday cards, will tolerate him during family holidays but that is IT.

  8. Thanks Ellen for opening up this discussion. I am constantly trying to balance the needs and wants of my three and then trying to find time for Andrew or even myself is often an after thought x I love sleeping kids too! ;)

  9. Thank you for sharing!
    Your honesty and dedication to your children...both if obvious :)


Thanks for sharing!

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