Wednesday, March 3, 2010

Beaten Down

After today's session with Finn's new "infant stim" therapist, I've decided to can her. As I posted last week, she was a half hour late the first time she came. I emphasized to her that I have to be out of the house by 12:20 to pick my twins up from kindergarten. Apparently 11:30 on Wednesdays is the only time slot she has available. Fine. If that's the case, then she really needs to be on time if we're going to get anything close to an hour of therapy in, which is what she's contracted for. Well, she was late again today, and this time didn't even bother acknowledging or apologizing for being late. Also, I'm not at all impressed with what she appears to have to offer. She plays with toys on the floor with Finn. Period. We do that already. Emily, the OT, does that. It's overkill. She's not wowing me. So we're done with her; I've already contacted our SC and told her to let her know that she doesn't need to come back. And in all honesty, if this is what "infant stim" is all about, I'll cheerfully do without a replacement.

After the infant stim therapist was here (and I rushed out to get my girls from school), I called Emily, our OT, to get her input. I can call her like that, whenever, to blow off steam and to get her input on therapy, because we have a rapport outside of therapy. We're in the same book club. She's a fellow mom in the neighborhood. Her kids go to the same school my kids go to. We have friends in common. So I called her because I wanted to get her input on canning the infant stim therapist and pushing for speech therapy for Finn. We've thus far been denied ST because here in California, Finn is deemed too young to qualify for one-on-one ST. So Emily was telling me how she began as a therapist in Chicago, and how different EI is there and in other parts of the country, and how in most areas, kids with Ds get ST from birth.

During the course of the conversation, in describing her frustration with how the EI system in California is set up (and I agree, it's screwy), she did the unthinkable: she used the R-word. To me. Today, of all days, the day we're Spreadin' the Word to End the Word. For crying out loud. And she used the word to describe the EI system! Can it get any more ironic than this, folks?

You know what? I kind of lost it after I got off the phone with her. I didn't say anything to her because I was just so stunned. But when I hung up the phone I started crying and shaking - a full on meltdown. Kevin, my 13-year-old, was worried when he found me crying at the kitchen table. "What's wrong, Mom? What's wrong? What happened?" So I told him - this smart, sensitive, compassionate kid who thinks the world of his baby brother, and who is on his own crusade to change people's attitudes - I told him that someone used the R-word in conversation to me and that it just really, really hurts.

I know this sounds rather melodramatic. But it felt like the straw that broke the camel's back. Why am I fighting such a clearly losing battle? It's no use. These words, and these attitudes, they're everywhere. We can't get away from them. It hurts so much, people. I felt just completely drained and defeated.

I like Emily a lot! She's great at what she does, Finn is responding really well to her, she's wonderful. And I know she didn't mean any harm, I know she didn't. She's not a bad person, she's a really kind, wonderful person. But see, even she - a person who makes her living at working with developmentally disabled children - throws that word around without even thinking about it. How are we ever going to change something so insidious?

You know that speech that Kevin wrote? He's going to be giving it in front of the student body and their families at his school this Friday evening. I guess some kids have gotten wind of the subject matter of his speech. Want to know what one kid in one of Kev's classes said to him a few days ago? He said, "Hey, I hear you wrote a speech about a retard." Punk-ass kid . . . why I'd like to . . .

Ugh. Ugh. Ugh. Somebody get me a hole to crawl into.

All that said, I only let a few minutes go by before I knew I had to call Emily out on this. Of course it would have been easier to just let it go, ignore it, pretend I didn't hear it, pretend she didn't say it. But I couldn't. So I sent her this:

Hi Emily -

I want to tell you again how much I appreciate your help and input. I'm so glad that we have you on our team now.

I have to say something, and this is really uncomfortable. On the phone today, when you were talking about how the EI system is set up in California, you said, "That's just RETARDED." Ugh. That word hurts. I'm thinking you probably didn't even realize you said it. But see, that's the problem, it's become so insidious in our language that people don't even realize they're saying it, and they have no idea the people it hurts. Finn is developmentally disabled, and he will be for his whole life. So this is HUGE to me, a really, really big deal. It hurts me, as his mama, when people talk like that. And despite the fact that it's really difficult and uncomfortable to call people out on it, I owe it to Finn to try to change attitudes.

I just wanted to put that out there. No hard feelings. I adore you and am so happy with everything you're doing with Finn.


Oh, and here's something my oldest son, Kevin did (he's actually going to be giving this speech at Beechwood school this Friday evening):

And she did respond and was very apologetic, which I appreciate. It's not apologies I'm after though. It's a change in attitude. And I guess the best I can hope for is that when called out on it, people will at least think before they speak in the future.


Stephanie said...

Somehow I knew you were going to say she used that word before I read it. Yes, the epitome of irony. It makes me quite sad and I wonder if we're fighting a futile battle. But we gotta try for our babies. I find myself waiting in dread for someone close to my son to use that word. I know it's going to break my heart. Hugs to you friend.

Kristin said...

ROUGH day to say the least. Hope tomorrow's better :)

alyny said...

Wow! It is very surprising that an OT who works with developmentally disabled children would use that word to be honest:(
Now for my bit of honesty. While I did not use the word frequently,it was a word in my vocabulary at one point. I never connected the word to people,KWIM?( I pride myself of being sensitive too so that fact that I did this really embarrasses me.) Until YOU,Lisa. You wrote about it in this blog so long ago and then there was that unfortunate event on another site that I was witness to. I don't ever use the word and have also asked others not to and explained why. So know that you have made a difference with many people.

alyny said...

Oh and I just wanted to say how terrible the California EI system sounds to me. Here in NY kids can get individual ST from birth to age 3 and then it transfers over to the local school district but the therapists still come to your home it's just that all meetings,decisions are ran through our Special Education Committee.
I feel lucky to be able to get Cullen the services I do with little struggle. I hope that you are able to get ST for Finn.


BLOOM - Parenting Kids With Disabilities said...

Good for you Lisa! It's shocking that someone who is trained to work with kids with disabilities would use the R-word so unthinkingly! I would assume that someone who went to school to be an OT would have been educated about the power of words and also about how historically that word has been used to discriminate against the children she is trying to help.

You may want to check out a piece I wrote on the topic yesterday:

I can't wait to hear about your son's presentation. Cheers!

onlywhoiam said...

Hi Lisa, it sure was a long day yesterday, wasn't it? I was emotionally and mentally spent by the end of it.

We got ST on our plan because E had a diagnosed hearing loss for about a year when his ear canal was so narrow. I was baffled about what to tell the therapist we wanted or needed for therapy. I mean, I'm a language teacher, we are a household full of articulate people... I couldn't see where she fit in. You can't really do speech practice with a baby. The place where she fits is that she is fluent in ASL and is teaching me signs. Lots and lots and lots of them. You could possibly use this as a point when trying to get it for Finnian - there is lots of evidence that giving our kids the tools to communicate with their hands while they are still developing oral speech is good for them in so many ways - relieves stress, improves their self-esteem, helps them learn... you'd have to find an ST who also knows sign language but I am sure they are out there.

Also, if he has any oral motor delays with feeding/drinking (as E does), having an ST on board is handy because they understand the mouth so well.

I have everything crossed for Kevin's speech and I am sure that he will make a big impression. - Jen at only who i am

Talley Images said...

a big hug to you.... but I think you did the right thing... ven if it feels like a losing battle at times. Emily now really can associate her language with a living beautiful person and hopefully it will change the way she talks and thinks. Maybe it will inspire her to continue in your footsteps and now stand up for the children that she is working with.

This took alot of guts and grace. Thank you from another mom.

And good luck to Kevin... Im sorry that he has such an uphill battle to climb with his classmates, but I cant see at least one person not changing their thoughts/language after hearing him on Friday.

Congratulations on raising such great kids.

Kelly said...

Good for you Lisa! Confrontation is so difficult but when it comes to our kiddos, NOTHING will stop us. It sad, that this word is still used by those in the medical field (including those that work with our children). If they don't notice (our safety net), then how do we expect others to?! Unfortunately, this is going to take some time.....until then, surround yourself with love and acceptance and educate those who are so desperately in need of it!

Lisa said...

Hi Lisa-

It stinks that you had to deal with that all... and hopefully you've changed the mind of at least one person out there, i.e. Emily, about using that word so carelessly. We'll hopefully get to see the day when the r word isn't acceptable any longer!

On a different note, I wanted to point you to a new blog I just found that I thought you'd enjoy. She's a brand new mom to a doll with DS born just under two months ago.... (and when I say brand new- I mean she's new to the DS world!) You can find her at:



Life After Grad School said...
This comment has been removed by the author.
Life After Grad School said...

Uggh! Sounds like you had an awful day! Good for you for letting Emily know how you feel. Sometimes people just don't think until you force them to!

Hope today goes better for you!

last post deleted because I made a HUGE error that completely changed what I was trying to say! Why don't these things have an edit button?!?

Tara said...

I found yesterday to be emotionally exhausting. I'm sorry that she said that, but you handled it well.

And to Bloom, I am an OT and never received any education about acceptable language.

Esther and Brian said...

Lisa, I think that it's great that you stand up for what you believe in and are doing something about it, too. Have you ever thought of contacting the media and raising even more awareness? I am serious- you could do it! Oprah? I'd love to see a show on this topic and also discuss why only "typical" children make it on ads/billboards and commercials? As I said before, why don't they include all "other" children? We are one world, after know what I mean?

Jessica said...

What a trying day. I'm so sorry. I think you handled it great for what its worth.

Julie Shaw said...

Hey I just wanted to tell you that on your blog you have the save image feature block, but if you click on it it opens a new tab and then allows you to save the picture...just an FYI

Lisa said...

Julie, I want to make it clear that I do NOT want anyone copying or otherwise saving images from my blog. I consider these images MY property and they are not open for distribution. Thank you for respecting this.

free speech forever said...

Not only am I amazed by your reaction to a word, but more so that you feel the person who used it had somehow wronged you. It is unfortunate that so many people who have been cursed feel the need to use their grief as a weapon on others around them. Know this: You are not a hero; the world does not owe you anything because you created a defective child and you have no right to molest the lexicon to suit your unrealistic sensitivities. What's next? Outlaw the word fat, short or ugly because those words can be hurtful? You are the true monster here, not the ones who use your dreaded word. You are an enemy of free speech and therefore free thought.

free speech forever said...

Not only am I amazed by your reaction to a word, but more so that you feel the person who used it had somehow wronged you. It is unfortunate that so many people who have been cursed feel the need to use their grief as a weapon on others around them. Know this: You are not a hero; the world does not owe you anything because you created a defective child and you have no right to molest the lexicon to suit your unrealistic sensitivities. What's next? Outlaw the word fat, short or ugly because those words can be hurtful?
I am sure it is stressful dealing with a handicapped child and you have every right to be offended, but to work to outlaw words is the first step in working to control other forms of expression.
The world should not have to walk on glass to suit your fear of semantics.