Thursday, January 31, 2008


Ella said she hoped I didn't really think D. is broken. Ella, I borrowed that language from Rob, who has spoken so eloquently, so many times about the language we use, the language he uses to describe his daughter. I particularly like this recent entry, an excerpt from his forthcoming book:

You know, one thing I have taken some heat for in the past, and will again in the future with this book, I'm sure, is the fact that I don't really have much use for "gentle" or "correct" language where disability is concerned. And I know that's very important to some people. You know, terms like "special" or "challenged" or "differently abled" instead of disabled. And I understand why that's important. It's never been a good fit for us. I refer to Schuyler as "broken" and her disability we refer to as her "monster". So I guess it's different for us.

I guess the thing that I don't understand completely is, how that type of gentle language helps the person with the disability. I suspect that it is more for the rest of us, the rest of society. It helps us integrate them and deal with it, deal with something that's hard.

And I don't know that it should be easy, actually. I don't know that it should be something that gets to be sugarcoated, because it is difficult, and the things that these people go through every day, it's not something that we should easily deal with. It should be something that we're always aware of how hard that is.

We have adopted some of that language. For example, we told our daughters that D's brain is broken. And it is. D. will never be neurotypical. His brain will always and forever be different from your and mine. He may learn to emulate neurotypical, to compensate for his structural differences, to pretend to be just like us, but the truth is that his brain is not typical.

On the good days, I think of D. as delayed. On the really good days, I think of him as mildly delayed, almost caught up, doing really well. On the bad days – and two days ago was a doozy for sure, what with the feces on the walls (I don’t think I even told you about that part of the story, Internet, but trust me that it was just as awful as it sounds) and the beatings administered to himself and to me – it sure feels like he is broken.

I’m sure there are people who find this offensive. If you have a child with special needs and would never consider that child broken, then I am sorry if I hurt you. Let me tell you that I don’t think your child is broken. I just sometimes feel like mine is. And if you don’t have a child with special needs, you can love me a lot and empathize, but you will never know the tears in my heart. You will never know what I feel on the bad days.

With that out of the way, let me tell you how much I love D’s psychotherapist, Mrs. Block. I left her a fairly desperate message on Tuesday evening: “I think we need to add an extra weekly therapy session. I’d like to talk to you about why I think that and hear what you think.”

Now, you’d think that a woman who gets paid for each therapy session would be ALL OVER adding a weekly session. But Mrs. Block is FREAKING AMAZING, and she told me that an extra hour with her wasn’t the answer. Instead, she gave me very detailed and specific instructions for handling everything, told me to think about it, told me how to approach it with Mr. WG, told me to come to her with more questions after I had time to think, and gave me hope. And yesterday, I tried what she said. In a nutshell, she helped me see that the whole poop on the wall thing – that’s a control issue. That’s D’s response to losing control in other areas, and perhaps in particular a big response to the fact that on Tuesday I took him to have an assessment for services in the public school, and he did not want to be there, and I forced him to stick it out. So his response was basically a big ol’ “F-you, Mom” expressed in the only way he knew how.

Solving that problem for right now means simply not giving D. the opportunity to be alone with his shit, and providing the language that describes his emotions. “That was really hard. Mommy made you stay with that lady and do hard work and you did NOT like it. And you did it and it was not fun.”

As for the hitting, Mrs. Block said that this is not an approach she normally advocates, but we’re on the cusp of something that has the potential to swing wildly in either direction: right now D. is a 4-year-old kid who is the size of an 8-year-old kid. He’s experimenting with anger, and so far it’s been working for him, because it forces us to engage. If we let this continue, we’re going to find ourselves with an aggressive, angry 10-year-old who is the size of an 18-year-old. If he’s labeled as the mean kid or the bad kid or the angry kid, no one will be motivated to help him. So to nip this in the bud, Mrs. Block said, disengage. Completely. When he starts hitting himself, make sure everyone – D, the other kids, and Mr. WG and I – is safe, and just walk away.

This is so incredibly hard, but so important. And she was careful to warn me that it will get worse before it gets better. But I tried it yesterday, and the episodes did pass much more quickly when I withdrew my reaction and my presence.

We are in for some hard times here. But I have to believe that we can make it through to the other side.


lisa said...

Mrs. Block sounds right on the money. I know how hard those bad days can be, when delays are seen through the worst possible prism. I also use the term "broken" for Julia's brain, because that's unfortunately what it is.

kirsten said...

I just want you to know I think you are an amazing mother and my heart goes out to you.

ella said...

Thank you for the explanation, it makes a lot of sense. And I truly did not mean to sound judgmental, so I apologize if that's how it came across. I know you live in a very different world from mine, and I have nothing but immense respect for you. And I'm glad you are finding new tools (go Mrs. Block!) and strategies. I cannot imagine how difficult this is, but you do seem to bear it with grace, even if you don't see yourself that way...

Blu said...

You can do it. It sounds hard, but you've made so much progress already. You will all make it though this. I really believe that.

WriterGrrl said...

Thank you all for your kind words. Ella, don't worry -- I wasn't upset, I just wanted to offer the explanation.

Lisa b said...

Wow WG, this is powerful.
Perspective helps but in those moments of frustration I too think of my kid as 'broken'.