More kitchen table talk

Is it possible to be a good student but a poor learner? I think so, based on my own personal experience. During my school years, good grades came easy. I was eager to please and to be praised, but unless the learning process happened simply through the mere act of being present in the classroom, I really didn’t know how to learn. It wasn’t just in the classroom that things were like this; life too dished up plenty of lessons about happiness, gratitude, generosity and the true nature of things, but unless they came with no effort on my part, they remained a mystery, like quantum physics or ancient Greek.

Lucky for me, parenting a child with special needs has helped make some great life lessons accessible to me, the poor learner. Lessons about the beauty of difference, the tyranny of ego, the gift of this precious moment, and the impossibility of permanence. Without the particular life circumstances that come from being my son’s mother, I don’t know that I would have ever really learned them. It doesn’t mean I don’t forget them sometimes (most of the time) but without him, they would be beyond my grasp completely.

When interviewed by Andrew Solomon for his book Far from the Tree: Parents, Children and the Search for Identity, (watch his wonderful TEDMED talk if you haven’t seen it), Karen Robard, whose son David has Down’s Syndrome, was asked if she wished her child didn’t have DS. She answered: “I would cure it in an instant to give him an easier life, but speaking for myself, well, I would never have believed 23 years ago when he was born, that I could come to such a point, but…it’s made me so much better, and so much kinder, and so much more purposeful in my whole life, that speaking for myself, I wouldn’t give it up for anything in the world.” It may be hard for some people to understand Karen’s perspective, but I do. Like me, Karen has a teacher in her son.

So last night my 10-year-old daughter and I were sitting at the kitchen table filling out back-to-school paperwork, and she mentioned that she had had a dream in which her brother didn’t have Coffin-Lowry Syndrome. She proceeded to tell me of the zany antics that can only ensue in a dream world. I’ve had a couple of dreams too in which he is neurotypical and I have woken up feeling shaken. I had just watched the Solomon film earlier in the day and Karen Robard came to mind, so I asked my daughter tentatively in the middle of the allergy form if she ever wishes that he didn’t have CLS. She replied without hesitation yet without insistence: “No, if he didn’t have Coffin-Lowry, I would wish that he had it. He is perfect the way he is.”

I continued to scribble away in order to keep it safe for her to keep talking, as I try to do when the subject of her feelings about her brother’s disability come up. (My friend Susan calls “periodic check-ins,” and you never know when they will happen.) After a few more fields and a signature I casually mentioned that it’s pretty cool that she felt that way, because some people might not see that. Not exactly knowing where I was going with my next sentence, I simply said, “I mean, it’s kind of…” “It’s not hard, Mom. You can’t blame him.”

And in her steady, matter-of-fact tone, I heard and understood that she meant that not only could we not blame him, we could not blame anyone. And the reason we could not blame anyone was that there was nothing to be blamed for. Just as she said, he was exactly as he should be. Our family was exactly as it should be. Life was exactly as it should be. And furthermore, I learned that I didn’t always really believe that, and that she knew I didn’t.

Outwardly, I continued filling out yet another form. But inside, my synapses fired as I realized that my daughter, with far less life experience than me, had already attained an acceptance that I was still struggling with. And finally, I was reminded of the biggest lesson yet: that life hadn’t put one great teacher in my family, but two. 

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Special needs eclipse

eclipseI had a special needs eclipse this morning. One of those moments when the challenges of raising a kiddo who needs a lot of help blocks out all of the light. The details aren’t important, but I can say that the morning involved toileting accidents, cold tea, lots of grabbing (on his part) and redirection that escalated into yelling (on my part).

I can’t even capture the intensity of the dark feeling now, but it was there, even though the circumstances seem trivial now. In one flash I saw myself forty years from now tying his shoe laces, wiping his mouth and his bottom, and my mind did a high-speed rewind through all of the thousands of tying and wiping moments I’d have between then and now. Zero to despair and rage in sixty seconds. It was hot and black and tight.

In those moments, there is a resentment, if I’m honest, both toward my son and toward the Universe. I cannot recall the last time I finished a breakfast without getting up. That’s where the heat comes from. The tightness comes from the seeming eternity of it. I have done this for so much longer than I thought I’d have to, and it’s not ending any time soon. Somewhere, someone is leisurely drinking tea and reading the paper, and it ain’t me. And it won’t be any time soon. A searing current of jealousy is there. I’m back at the very “why me?” beginning. It’s not pretty.

Something shifts ever-so-slightly and a friend pops into my mind. She has a child with special needs too, and it strikes me that she is probably having, or has had, or will have a very similar morning to mine. Then another friend. The another. A comment on this blog comes to mind; a mom who pointed out that it used to feel like we were having “one of those days,” but with time, you realize it’s just “one of those moments.”

At that moment, the eclipse passes. My beautiful boy is sitting in front of me again, and I am tying his shoes. He pulls to get up before I’m finished, but things feet looser. I don’t need to push against it, to control it or for it to end. It just is.

Water, water everywhere

I’ve been quiet, but life hasn’t. Returning from some back-to-back conferences, I dive into our latest round of potty training my 10-year-old son, who confounds us by being successfully able to stay dry at school but not at home. You can imagine that by now, we’ve tried nearly everything. Quitting diapers cold turkey, sitting on the toilet every five/10/30/60 minutes, sitting on the toilet until he goes, sitting only when he asks, rewarding him when he sits on the toilet, rewarding him when he goes, rewarding him when he stays dry—stickers, M&Ms, iPad time—as if we’re one ingenious bribe away from getting this to work, potty books, social stories, pretending to ignore it completely.

We’ve received advice from countless experts: behaviorists, toileting clinicians, gastro-intestinal specialists, neurologists, developmental specialists, pediatricians, other parents, teachers, day care providers, nurses, grandmothers. It’s not like we’re trying to solve world hunger, but it’s a complex problem to us. Our school says that he’s the most complicated toileting case they’ve ever worked with.

Every few months we pump ourselves up for a renewed effort, one that requires patience, detachment and strong legs to make the trips up and down the stairs to the washing machine. This latest effort started yesterday. We’re trying something new this time, getting help from the behaviorists at school who have agreed to come to our house after school through bedtime to help us do what is working successfully for them. Less than 24 hours later, we’ve had major success—bringing him to the bathroom an hour after he fell asleep actually worked—and a morning filled with tantrums, flopping, crying, refusals to sit on the toilet, and refusals to walk to the bathroom. After my husband lifted our son from the breakfast table to take him to the bathroom, my daughter welled up in tears and said, “That doesn’t seem like a very nice way to treat a child.” Ouch. And with that, I remember every other time we’ve stopped trying.

Sitting down to write today, I wondered the point of today’s post would be. I like to have an insight, a solution, a resolution. But today there is none. There’s lots of ambiguity—can he really do this? Can we?

I’m getting used to this ambiguity. Often special needs parenting (and living in general, as you all insightfully point out) is about learning to thrive in that in-between feeling—being clear about what you want, having faith that you’ll get there, but not being attached to getting there. It’s like floating. I let go of the shore, on my back looking up at the sky, not getting too caught up going in any particular direction, occasionally paddling my feet to steer me in the generally right way, but not so much that I get a cramp. Just being. Just floating. Just appreciating being wet.

Do you float? How? When?

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.

The inner spiritual life of an ambulance blesser

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?

Keeping your tongue up with the times

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.