Feeds:
Posts
Comments

Posts Tagged ‘intellectual disability’

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.

Advertisements

Read Full Post »

There’s been a story recently in the news about a boy with an intellectual disability who was denied first communion on the grounds that his priest did not believe the boy had “sufficient knowledge” of Christ, a requirement for first communion. In trying to think back to my own first communion, I can’t recall that I had “sufficient knowledge” of anything besides a really fancy white dress and shoes that I was going to be allowed to wear. Does any seven-year old?

Religion seems too big a topic to address here, so I won’t. This whole incident simply made me simply wonder about the inner spiritual life of my son, who is close in age to this boy and has intellectual delays as well. Even if we aren’t a real “organized religion” sort of family, I still want to instill him with a moral compass, a sense of compassion and a deep connection with the world.

Something happened recently that reminded me that I need not worry.

Like many kids, my son has trouble shutting out ambient sounds in his environment—but his filter is really non-existent. Combine this with a love of vehicles, and every train whistle, car alarm, back-up truck beep and fire truck siren must be commented on, regardless of what else is going on in the moment.

Recently he pointed out that several ambulances were going by as we walked in our busy neighborhood. I usually tune them out like all jaded city-dwellers, but they were loud and it was a little more intense than normal. He looked nervous so I tried to re-assure him by saying that I hoped that everyone was safe and OK. Imagine my surprise when I realized that he had created a very real and steady practice of pointing out every subsequent ambulance siren to me with the words, “Hope everyone is OK.” I had stopped hearing ambulances long ago, but here he was blessing each and every one and reminding me to join him. Is more “sufficient knowledge” than this required?

Read Full Post »

Stephen Colbert as the fictional Stephen Colbert
Image via Wikipedia

I remember, during the course of so many conversations, having to point out to my dad that we didn’t use this word or that word  to describe various groups of folks anymore. I know he didn’t mean to want to be offensive; he just needed a little help keeping up with the times. (Although I always appreciated that he said “dungarees” instead of “jeans” and he often called his shorts “Bermudas.”)

Well, now’s my chance to help some of you keep up with the times too. News flash, in case you missed it: the r-word, including the word “retard” and phrases like “That’s retarded,” are now off the list of words to use if you’d rather not appear degrading and hurtful.

Stephen Colbert interviewed Special Olympics CEO Tim Shriver who did a great job of explaining why here. They do a quicker (and funnier) job than I can, so check it out.

Read Full Post »