Thursday, October 18, 2012

On explaining special needs to a sibling: another conversation with Sabrina

"You're so smart!" I tell Sabrina. It's bedtime, and she's just aced an online spelling test.

"Am I smarter than Max?" she asks.

"Max is smart, too," I tell her.

"How is he smart?" Sabrina wants to know. "He can't talk!"

"Yes," I tell her, "he can talk. He just does it in his own way."


"Remember we've talked about the condition Max has? Do you remember what it's called?" I ask.

Sabrina doesn't remember.

"It's called cerebral palsy, and it affects how your muscles work," I explain. "There are muscles all over your body. Your tongue has muscles, too. And when you have cerebral palsy, sometimes your tongue can't quite move to make certain sounds. That's why Max has trouble saying 'p's' an 'b's' and other sounds."

"He says 'Daddy' very well!" Sabrina notes.

"Yes, he does!" I say (and hold back from pointing out that he says "Mommy" pretty darn well, too).

"If his muscles don't always work well, you have muscles in your eyes, so why can he blink OK?" she asks.

I am continuously bowled over by this child's questions.

"Certain muscles in his body work better than others," I offer, and she nods.

And then:

"OK, I have a question that's sort of about this but not! You know how if there is ever an emergency I should call 911? What happens if you and Max are home?"

At first, I'm not quite sure what she's getting at. And then it dawns on me.

"You want to know what happens if Max needs to call 911 because something happened to me?" I ask.

Sabrina nods.

Another pause, and my heart is hurting just a bit. "Well, Max doesn't yet know to call 911, but he will soon. Because he's smart," I say. "And you don't need to worry, because nothing will happen to me."

And that's that, and she goes to sleep, and then of course I replay the conversation in my head for the rest of the night. Did I say the right thing? Should I have brought up more? Did she absorb it? Did she sense how much I struggled to give answers?

These conversations are so important to me. I know Sabrina is increasingly processing what it means to be a kid with special needs, and what it means to be the sister of a kid with special needs, too (she's come a long way since she used to describe Max as "He needs special needs!"). And I want to make sure she's getting a clear message and really understanding.

I usually let the conversations happen organically, and I never force anything. They often crop up at bedtime, or when Sabrina and I are out and we see a kid with special needs. At times, I've gotten choked up, especially when we talk about Max's birth. It remains my biggest tender spot.

I fell asleep thinking that I did the best I could—my usual approach toward raising a kid with special needs.


  1. awesome censorship you have on this blog. I see you removed my last comment. curious as to why, when my comment was not profane in any way. can't handle any honesty, aye? maybe you should teach your kids to take note of honest opinions instead of deleting them when they're not "inspirational" enough. you need to read this as you're clearly contributing to the problem: adios! (assuming this will be deleted, too).

    1. If I were Ellen, I would put as much thought into your comments as you do in signing them. You want to be taken seriously? Take responsibility for your actions. Own it. If there is nothing but honesty then you shouldn't have a problem with that right?

  2. Ellen, you continue to amaze me.

  3. I love this post, Ellen. I muddle through what to say, wondering if I've responded in the right ways (which, by the way, I think you did - great job answering Sabrina's questions!). Some days I beat myself up, feeling like I should be better at helping my other two understand Zoe's cerebral palsy when they ask about it because, after all, we chose this life through adoption rather than having it surprise us through an unexpected diagnosis. I think we all need to give ourselves a bit of grace, and - as you end with - just do the best we can in each moment.

  4. Ellen,
    It looks like you have a troll (again). I think you did good! I think that it's really important to explain that to her if she asks. So good job! :)

  5. Erica and Tooner, thanks. Shannon, yes, this is truly tricky special needs parenting territory. And Anon Y Mous: That comment was removed out of respect for the person I was celebrating, who I knew would read it. If you'd care to email me, feel free: lovethatmax[at]

  6. Sorry, I got distracted:/ Thank you for this post - I needed to read this today. And this is a great pic of Sabrina;)

  7. I struggle with this to. Allie has transitioned from Boo has a bad pattern in her brain to Boo has special needs. I don't think she totally gets it. She is only 9 after all. But when we see someone with a disability she doesn't always connect that with her sister. I think you have a good resolve, you did the best you could. That's all we can ever hope for!

  8. I think you did a great job! We are just wading into those waters a bit. M is 3.5 so we're starting to talk about what it means to have autism (he has that, as does his dad) and Marfan (which J and I have). The National Marfan Foundation put out a children's book, so we keep that on the shelf for the boys to look at as they want. Are there good children's books about CP that you could keep around in case Sabrina is interested too?

  9. The conversations with other kids are so far the hardest for me. Kids ask such innocent questions, but it's so hard because you know that's how they really think. With a sibling I think it would be even harder.
    I think you did awesome though and sorry about your troll. :(

  10. As she gets older, she will understand more and more. Also, what I find helps, is borrowing boos from the library that she will understand or looking online for books for her. Maybe even sites online can explain stuff in ways she'll understand.

  11. Hi Ellen,
    I just wanted to share that today i (along with the other class officers) gave a speech to the whole school(1400 kids) about the R-word. It is NCBI Day(that had to do w/ antibullying and stuff)Twords the end of the speech i told my story about being called the r-word and i nearly broke into tears. We got a good response and i cant wait until the Youth Rally for Respect in March.

  12. That is all any of can do Ellen. Breaks your hearth sometimes though.

  13. Personally I believe that an answer like your has a subtle message that not being smart is shameful. Just as I wouldn't insist that a blind child could see (just because one could claim there are ways to see other than with the eyes), I wouldn't insist that a congntively impaired child is "smart".

    I'd have told Sabrina that when I said "smart" I meant that her brain worked well and fast and that Max's brain doesn't always work that way and that he might not be "smart" in that way. But that being "smart' is hardly the most important thing out there.

    I'd tell her that, as she knows, Max has so many other important qualities: He's so determined and hard working. He works way harder to talk and communicate thans he does and he does a great job. He's funny and loving. He has passions for so many things (purple and cars too being just a few).

    1. The problem with that answer is that in a bad moment, Sabrina might be tempted to blurt out "Mom said I was smarter than you!" to Max. The word "smart" is so loaded. I probably would have said that everyone is smart in their own way, Sabrina is good at spelling and Max has a good sense of direction.

  14. Kathryn, that is awesome! Maya, I keep meaning to order Views from our Shoes by Donald Mayer, a collection of essays by siblings of kids with special needs; he started Sibshops. I'm also planning to sign up for Sabrina for one in our area.

    Annie, here's a news flash for ya: Even if a child has cognitive impairment, they can still be smart. Max sure is smart.

  15. Ellen, I have been meaning to get something in place to allow coop to access '000' I wonder if the emergency depts that take the initial call can have a notification that someone with communication issue comes from that phone number?
    My second child is four so hasn't really asked about coops cp, she knows what it's called and how he acquired it but that's all for now. She has a great empathy for inclusion and difference even though its just a natural part of who she is. It often annoys me when people make stupid comments about siblings missing out- I feel it's the opposite!
    I think it's a great idea to have these open discussions with Sabrina to know where she is at on her sibling disability journey as such and plant a few seeds that cognition can be seen in many different areas of life not just spelling or academics xx bron

  16. Ellen, I think you and Annie aren't using the word "smart" in the same way--but I think you and Sabrina aren't either, given her "how can he be.." question. How about skipping the word altogether, and saying "You're so good at that!" to either kid when s/he does something that comes naturally, and "You learned that so well!" when s/he succeeds at something that took practice and effort? Then if Sabrina asks if she's a better speller than Max, the answer is simply yes she is--spelling is hard for Max.

    Once I saw a little boy and girl, about 4 or 5, the girl taller and older-looking. The boy insisted to the girl that he was the taller of the two, she said he wasn't, and they decided to ask a grown-up. A women stood them back to back, made a big show of looking carefully, and said sweetly "You're both the same tall!" The boy was satisfied, and lost interest in the topic. The girl wandered off quietly. What was she thinking, I wondered--that the boy's ego was more important than simple truth? --that the adult liked the boy better than her, and wanted to make him happy at her expense? --that adults could not be trusted to give straight answers? --that she shouldn't believe her own perceptions? What if the adult had said "Girl is taller than Boy. But maybe when you grow up, Boy will taller than Girl. And anyway, so what?"

    My take on what you mean when you call Max "smart" or "bright" is that he's alert, engaged, continues to progress, exceeds expectations, and makes the most of his abilities. Like Annie, I don't think that's what people generally mean by "smart"--but however you label it, it makes him a role model, even for "smart" folks.

  17. Hi Ellen,

    I think you did your best, just as anyone would have done. That said, I think Sabrina's worry about Max not being able to call 911 is valid, and no matter how much we want to, there is no guarantee that something won't happen.

    Perhaps you could teach Max how to call Dave (or someone else you both trust) if something were to happen, and let there be some kind of codeword so that this person can know something's up?

    I have a speech impairment myself, and I recently signed up for a 911 text messaging service. I'm able to make a phone call, but it's an extra security to know there's an option if the operator won't understand me.

    Of course, there might be times where no one is around to get you help anyway - that's inevitable! But it might ease Sabrina's worry if you acknowledge that you have thought of this - or, that you haven't, and that she made a good point, and that you can discuss your options.

    Anyway, just a few thoughts from me :) I think you are a great mom to your kids and do the very best you can. It's an honor to get to read about your family.

  18. Ellen said...
    Anonymous, I am not much of a label person, either. In fact, us moms of kids with special needs tend to not particularly like labels. Clearly, there are many, many kinds of smart that go beyond being, say, a whiz at math--ones that ALSO include traditional textbook definitions of being smart. Smart can be perceptive (Max). Smart can be intuitive and emotional (per the book Emotional Intelligence). Smart can be amazing recall (Max). ETC ETC ETC. What's not all that smart, I say, is trying to convince a mom that her child is not smart! What's the point in that?

    Sandra, I hadn't paid much attention to the 911 thing until Sabrina brought it up. I'm looking into getting a phone with large #s Max can easily touch and pre-sets so he could just hit a button and dial 911 if necessary.

  19. Ellen,
    Rest assured you are doing an amazing job. I struggle with this ALL the time, as Quentin's twin sister, Fiona, is (extra-)verbal while he is not. I am constantly seeking out sibling support groups, but there seems to be nothing out there for younger kids. (She is 5.) I often worry about her, as she struggles to figure out what autism is and why her brother is so different. This post hit a nerve for me.

  20. Oh Ellen, I think you did an awesome job! It's easy to over-think those conversations in retrospect, but you did a great job of saying just enough. I always tend to say way more than is required in the moment. You gave her the perfect amount of information to percolate in her own mind. Bravo!

  21. Hi Ellen,

    Excellent post. I always like hearing about Max and Sabrina's sibling relationship.

    Maybe you covered this already and I just overlooked it, but have you ever considered writing a post about what it was like to bring another child into the family when your son had significant needs in addition to the usual toddler stuff - how you prepared him for a sibling, whether you worried about giving them each enough attention, that sort of thing?

    I bet there are a lot of parents out there who have some of the same questions, whether the first child has developmental delays or is chronically ill or what (my mom never had a second child because she was worried all the care associated with my heart issues would take away from hypothetical Kid #2).

    Anyway, just a suggestion :) Keep writing! As a non-parent, your blog is always thoughtful and interesting to read!

  22. I know this wasn't the point of your post, but I have a really hard time with the word "smart" and have pretty much dropped it from my vocab, as far as my kids are concerned. Children get praised a lot for being smart, and what good is it, ya know? My daughter is a smart kid, but my son - who has a cognitive disability - well, the truth is, that he is not. I hate to place a value judgment on smart - it is what it is, and it's OK that he doesn't have the same intellect as others (emotional intelligence and all that stuff aside - I think we know what most people are referring to when they say "smart").

    So if my daughter is smart, big deal, right? It's nothing she did or didn't do, to be that way. But if she worked hard to achieve a new skill - well, that's something I will praise. Same with my son who has special needs - he can be a hard worker and diligent, and those are traits to be admired, IMO. Just like I wouldn't stroke my children for being beautiful (although I think they are!), I view praising them for their "smartness" as kind of the same thing.

    Our society places such a value judgment on intelligence that it sounds unloving or perhaps disloyal to say that my son is not. But there's nothing particularly redeeming about being smart - it's what you do with it that matters, right? And my boy can do a lot - he can work hard and push himself and learn a new skill, just like his smarter sister. And I will admire that about him. But I don't find being smart particularly admirable or worthy of praise; it's just the way one was born.

    All that said, I do understand the point of your post, and I know those are going to be tough conversations to have, when my younger children become more aware of how different their oldest brother really is. We figure it out and plod through as best we can, right?


Thanks for sharing!

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