Scene from a breakfast table

INT. AT A BREAKFAST TABLE – MID-MORNING

The table is set for four although only two people sit at the table — an energetic seven-year-old DAUGHTER and a slightly groggy and disheveled woman, her MOTHER. At the two other place settings, a full but untouched bowl and a cup of obviously cold coffee sit opposite a rather messy, half-eaten dish of food.

Off-camera, a boy and a man are heard upstairs in the bathroom, where Week 8 of an Intensive Potty Training Siege is under way. Strains of Angry Birds and Thomas the Tank Engine spill down the stairs.

DAUGHTER

(With a maturity completely out of character, perhaps intending to distract her mother from the fact that she has covered her oatmeal in a vast quantity of brown sugar.)

So, Mother, what are you studying these days when you go to Children’s Hospital? (Takes more coconut flakes. And some raisins.) Like, are you studying to be a physical therapist, or an assistant doctor?

MOTHER

(voiceover, as she chews a bite excessively thoroughly)

Oh crap, oh crap, oh crap. Teachable moment approaching at 100 mph. Do I take it? WTF, why not. We saw the movie “A Dolphin’s Tale” this week and I think I did a good job teaching her about physical disabilities. I think I can handle taking this to the next level. Let’s do this!

(Aloud in a deceptively unaffected voice.)

Well, I’m actually studying kids who have something called developmental disabilities. Do you know what that is?

DAUGHTER

Oh, you’re studying Brother? Are you learning how to take care of him?

MOTHER

(Voiceover, completely freaking out but managing to act cool.)

What? How does she know? I’ve barely been able to refer to him as having a developmental disability to myself. I don’t even think I’ve ever used that term in front her her. Damn kids, they repeat everything. Shit, I have to stop cursing. OK, calm down. This is it! You’re going to have The Talk! Stay cool. What did the books say to do? Oh yeah, I never found those books.

 (aloud)

Well, actually, I’m studying in a class of people who are doctors and nurses and physical therapists and people like that who want to learn how to take care of kids like him. They’ve invited me to study with them because they want to hear what it’s like to be a parent of a kid with a developmental disability….They ask me about you, too. They want to know what it’s like for brothers and sisters of kids with developmental disabilities. Maybe you could come to class with me some day and they could talk to you. (Pause.) What would you tell them?

DAUGHTER

(Without hesitation)

That’s it’s hard to get my parents’ attention because they’re so busy with Brother.

 (She glances to get reassurance from her mom as she realizes that she might be saying something that’s not good.)

MOTHER

(Sips her coffee, nodding in agreement. Voiceover)

Oh crap, she noticed. OK, just acknowledge her reality, don’t try to fix it. Let her talk.

DAUGHTER

Because he needs a lot of help doing things, and he’s active and moves around a lot. And I help him, too.

(Though she has been speaking at a rapid clip, it’s clear she feels she has crossed a line and somehow betrayed her brother to the imaginary group she is talking to and begins to backpedal.)

I mean, he helps me and I help him. We teach each other stuff. I teach him things he needs to learn, like the alphabet and counting.

 MOTHER

What does he teach you?

 DAUGHTER

He teaches me that he’s been learning things at school. It makes me feel good to know that he’s learning things and growing.

(With a certain amount of surprised realization)

 Being a sister of a person with a developmental disability actually makes you feel pretty special.

MOTHER turns her head to hide her smile and watery eyes. She wants to cheer and hug her daughter; she realizes that the conversation went so well that if it was scripted it would seem fake. But she is acutely aware of the danger in praising her too much at this moment; she fears that she will condition her daughter to be self-sacrificing and ultimately resentful, which she desperately wants to avoid.

DAUGHTER too decides that that’s about all she can handle, and asks if she can have more coconut flakes on her oatmeal. Her day continues as if this conversation has never happened.

Published by Cristin Lind

Facilitator, consultant, speaker for better health and care through patient-professional partnership. Passionate about helping change agents build courage and agency. She/her.

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10 Comments

  1. The DAUGHTER in your story is amazing. I believe she must have lived many lives to have gained all this knowledge and sensitivity. And the MOTHER has so much to contribute to her new “job”.

  2. This is the first of periodic check ins ~ this role of great balance-er is often overlooked. Making sure everyone has enough of you is a challenge. The impromptu conversation 9and many more to come) make it ok for your lovely daughter to be honest and open….good job !!!

    1. I can see how this is going to be an on-going thing. At least I hope it will! We’re looking in to a SibShop class for November. She has a lot to say about it all, and yet at times it’s no big deal, just as it should be.

  3. I liked the fact that you were conscious of the fact that you didn’t want to condition DAUGHTER to be self-sacrificing & self-serving. Her needs, wants & dreams are also important, even as BROTHER’s are too. Well done MOTHER! – you know that this balancing act goes on even for those of us with kids who don’t have special needs, those of us with blended families too.

    1. Thanks for commenting! It seems so obvious that she has her own needs, and it’s hard to admit, but it’s only been in the last year that I realized that I had an unconscious expectation that my DD would take care of her brother when I was gone. It killed me to think I was leaving her with that burden and I do think it was like a cloud over my relationship with her. Then this past year I was listening to a webinar by adult siblings of folks with special needs when one of them said, “It’s not your child’s job to take care of their brother or sister.” When I heard that, a lightbulb went on for me and I realized that I could let go of the guilt by simply accepting this to be true. While she might WANT to do that some day, and I won’t hide my hope (from myself) that I hope she does, I have to set things up as if she won’t. Personally I’m more likely to do something because I want to, not because I have to. But I really do like life (and myself) better when I embrace the idea that it isn’t her job.

  4. That daughter is a pretty amazing kid. My heart is so full after reading this post that I don’t know what to say:)

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