so dumb

“Stupid is a SAD word. Dumb is kinda like saying STUPID.”

~ Brooke

***

Katie had asked me to come into her room “to talk for just a moment, Mama”. A moment quickly gave way to an hour. Little Miss didn’t need to talk, she needed to TALK.

***

“Like when I have play dates over who don’t really know maybe, and they look at Brooke with that ‘she’s so WEIRD’ look. You know that look, Mama? The ‘why is she so WEIRD’ look? Or like when neighborhood girl was over and she said, ‘You know how your sister is so dumb?’”

Stay calm.

Breathe.

Don’t let her see it.

“You didn’t tell me about this, honey. What did she say exactly?”

“Well, we were playing and she just said, ‘You know how your sister is so dumb?”

Damn it, I was so hoping I’d misheard. I was praying she was going to say, “You know how your sister pits her plumb? … hits her drum? … sucks her thumb?” Anything but that. Damn. Damn. Damn.

Stay calm.

Breathe.

“So what did you say, love?”

“I told her that she’s NOT dumb at all. That she’s actually really, really smart and that if she said stuff like that ever again she couldn’t be my friend.”

We talked for a long, long time. I gave her some words that she might be able to use next time. My sister’s brain works differently than yours and mine, but that doesn’t mean she’s not smart. It just means that some things can be more challenging for her. We spent a lot of time detailing Brooke’s challenges and talking about the strengths that are actually wrapped inside each and every one of them. She started repeating them back to me.

“Ooh, like how she can repeat anything just like she heard it – what’s that word for it, Mama?”

“Echolalia, baby.”

“Right, echolalia. It may seem like it’s not good now, but when she speaks Spanish like Dora it sounds just like someone who grew up speaking Spanish instead of like us which sounds like, well, you know, someone who is just trying to speak Spanish.”

“Exactly, love. Exactly.”

And I tried to drive home the fact that she didn’t have to have those kinds of conversations alone. I told her that Daddy and I would always be there to help.

“But, Mama”, she said. “I DO have to handle it alone. I mean, maybe I don’t really, but I’m just telling you, that’s what it FEELS like.”

“Oh, honey, I know,” I said, struggling to keep my voice even. She’s the one reporting back from the front lines. We’re just sitting safely inside HQ drinking coffee and talking strategy. What the hell do we know? “I know it feels like you have to do an awful lot by yourself. I understand completely why you feel that way. But please, please know that you have a lot of people who can help.”

I ran through a list of people at school. The social worker that she adores, her teacher, the inclusion facilitator – the wide and caring and wonderful network of people who can HELP. And I came back again to me and Luau.

Luau and I talked that night and into the next morning. We agreed that we needed to talk with neighborhood girl’s mom. It then took us three e-mails, two phone messages, two outside consultations and five actual conversations before we decided how we wanted to handle it. “I need to ask your help” is the approach we decided on. “I’m sure you can imagine how hurtful those words would have been to Brooke had she heard them and how hard they were for Katie to hear. We’re sure she didn’t mean to be hurtful, but children can say some difficult things when they don’t fully understand a situation.”

It took a night’s sleep and lot of restraint to get to that point. “I need your help” was NOT our first reaction. “I’m sure she didn’t mean to be hurtful” sure as hell wasn’t mine.

The next morning, Katie hung out with me while I showered, as she so often does. “Hey, Katie,” I said, trying to sound casual. “I talked to Daddy last night and we both feel that its important for us to have a conversation with neighbor girl’s mom, OK?”

She nodded and said, “Yeah, I understand.”

I called the school social worker first thing in the morning. She was wonderful. “I’ll pop in and give her my schedule so she’ll always know where she can find me,” she said. She promised to make it seem like something she had already been planning to do as a matter of course.

I tried to push it out of my mind for a while.

I worked on the notes from our first inclusion committee meeting. I looked at the words on the screen that described the meeting for those who hadn’t been able to come.

We each talked a bit about what inclusion means to us – from honoring and respecting every individual’s contribution to the community to celebrating one another’s unique strengths and making the effort to look beyond the surface and to really get to know one another and understand each other’s stories. We talked about learning from one another, creating an environment in which every member of the community feels welcomed and empowered. It was a thought-provoking exchange and hopefully the first of many.

I organized some of the ideas that had come from our brainstorming session. I looked them over with a new sense of urgency. This stuff matters. It will make a difference. It has to.

I was grateful that we had already designated Sunday Katie Day – the yearly celebration of all things Katie. Not her birthday, not a holiday, simply Katie Day. The one day a year upon which the entire clan is subject to the whim and wish of little Miss Katie Delicious. She’d been tweaking the schedule all week long ahead of the big day.

~ Wake-up when I get up. Even if it’s before 6:45, I can go in to your room, and you can’t say it’s too early cause it’s KATIE DAY!

~ Cuddle time – with no books and no shows – just CUDDLES!

~ Breakfast – decorate-your-own-pancake bar (NOT THE FROZEN PANCAKES, Mama – HOME MADE ‘REAL’ PANCAKES with icing and chocolate chips and pink sugar and you can’t say that’s gross and no way can I have that stuff for breakfast cause it’s KATIE DAY!

And on it went …

And thank God for all of it. For things to DO, a difference to make, the things to look forward to – and for knowing that we would soon be celebrating Katie in all her Katiest glory.

Because otherwise I might have drowned in the thought that it took two adults – two adults who are steeped in sensitivity, two adults with a pretty decent grasp of human interaction, two adults with a lifetime of experience  -  three e-mails, two phone messages, two outside consultations, and five actual conversations to figure out how to handle what my 8 1/2 year old deals with on the fly EVERY SINGLE day.

These kids are carrying

an

awful

lot

of

weight.

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36 thoughts on “so dumb

  1. I know that gut wrenching feeling, like you’ve just been kicked in the stomach. In our case it was a neighborhood boy telling my 11 year old son that his sister ‘acts like a retard.’ Although we’ve talked about plenty of words he could have used to nicely set this boy straight, he was so stunned he couldn’t think of one thing to say. You handled it beautifully! Thank you for sharing that story.
    I think EVERY school should have an inclusion committee….

  2. This is beautiful. Heartbreakingly beautiful. My heart hurts for you and for our kids and for us parents. But remember …Because of two incredible kids, two amazing adults, numerous strategies and tactics, the world is a much better place. I can only hope to follow in your footsteps.

  3. I think mama edge said it very eloquently so I’ll simply say…yes. Ditto. Obviously, your amazing little apples have not fallen far from the family tree, either. :-) xo

  4. I think EVERY family should have a Katie.

    It is a lot of weight, but you manage with great grace to make sure that Katie is building muscle rather than being crushed by it. She is an amazing kid, and she’s going to become an amazing woman thanks to her experiences.

  5. My autistic child is 14 and it has gotten no easier for my typical daughter to deal with this type of behavior from other children. I long ago stopped believing that inclusion could really work. Inclusion sounds lovely on paper, in IEP’s and in controlled meetings and classrooms where everyone is on their best behavior, but it doesn’t account for the real world and how kids really act when no one is around. Unfortunately the siblings are the ones who have to take the brunt of the nastiness and the true feelings from other children. I feel it is even more difficult when the siblings are in the same school. The typical sibling never truly gets a break from autism. That is why I placed my child in a center. That way my typical daughter can at least have her own space, her own school and her own friends who aren’t always thinking “autistic sibling” when they see her.

  6. Thanks for sharing. I think I might be part of the weight, expecting my two typical children to fight the fight of ignorance. Thanks for giving me something to think about.

  7. Oh, my heart hurt to read those words. You are doing the right thing in talking to the parents of this child. Hopefully what you say will resonate with them and their whole family will have a changed outlook on the uniqueness of every individual. Everyone deserves respect.

    Yes, every family should have a Katie! Even though her load may be different and/or heavier than some children it will shape the way she handles the world at large. Everyone has “something” they carry from their childhood or their teenage years that shapes them in a profound way. Truly lucky for her she has two amazing parents to help her.

  8. I agree doing everything possible to foster an inclusive community. Unfortunately it doesn’t always work well in the real world is what I am saying. After too many years I saw it really taking a toll on my typical child. I was done sacrificing her happiness and sense of well being for forced inclusion which was essentially what was happening. She deserved her own space. I guess people can look at inclusion in different ways. I didn’t want her to become resentful of her sibling. It has worked much better for us.

  9. Samantha – It sounds like you’ve found an ideal situation for your family. While I agree completely that educational inclusion isn’t always possible, practical or the most beneficial situation for every child, I do believe whole-heartedly in doing everything possible to foster an inclusive community and a mindset of mutual respect.

    Perhaps I’m naïve, but I’m just not ready to accept that the principles of compassion, honor and a sense of shared responsibility can’t make a dent in the way that kids (and adults) treat one another.

  10. Yes, yes they do carry an awful lot of weight. And thank goodness for them – what they are doing “on the ground” while we think we have it almost under control at mission control is probably making the biggest difference for their peers. Just like you constantly work on Brooke’s tools, you’re equipping Katie with her own set of critical skills.

    love.

  11. I hope that like EI (which can make a world of difference in some children), that fostering an inclusive community at a young age will pay off in the long run…hopefully we are all doing our part to create a better “real world” tomorrow…

  12. It was so hard to read this, I hurt right along with you. Katie is pretty amazing and the two of you have really equipped her well to deal with this ‘weight’. Hopefully talking with that little girl’s parents helps but what I think is the most awesome is that you’re on that committee at school. It’s really inspiring and ever since I read your first post on it, I’ve wanted to start/join something similar. Hugs.

  13. Children can be cruel even without meaning to be, and I don’t look forward to that stage with my boys.

    At three, my son still does things that most kids think are cute – like the fact that he always dances to music, and the class generally gets excited and says, “Oh, he likes that one, let’s sing it again so he will dance again!” But I know those days are coming when it will be teasing and not encouragment that his classmates offer. My heart hurts for you and for Katie, having to deal with that now.

    But I have to say it again. You do an amazing job. As a mother, as an advocate, and just as a really great person. And you can see it in how well your girls do and how incredibly thoughtful and insightful Katie is. You’re doing all the right things, and you inspire so many of us!

  14. I believe that nothing truely great ever comes from something easy. Life lessons are hard and painful, yes, but they make us who we are. They make us strong. They are in Katie’s words when she defended her sister. Had Brooke been born “typical”, Katie might have been the child calling another “dumb”. (Most likely not cause you are such an awesome mom!) Its HARD and it HURTS but what a GREAT learning experience for this neighbor child and her family. I hope her parents were open to your communication! Lesson or not, Im sorry you had to go through that.

  15. I keep waiting for the day when this sort of thing becomes our reality. I know it’s only a matter of time. Thank you for sharing your “road map”. I know that dealing with this situation must have sucked, but I still think you guys (Katie included) dealt with it beautifully.

  16. you know, i was thinking about katie all weekend b/c of your “buttoned up” post. the fact that she thought to ask brooke if you two should not look at her while she worked on her buttons. she is an amazing sister, so in tune, so full of wisdom, sensitivity and grace. what a blessing she is to us all.

  17. That’s great you’re reading it together! There are some really good places for you two to talk about what’s happening. And some really good belly laughs :)

  18. Ya know the saying, ignorance is bliss? (of course you do, being rhetorical here) Thats how I see the kids that (without malice) say things like “dumb” or “wierd”. They just havent had the experience of interacting with someone that is not neurotypical.
    Give Katie “kid vernacular” to explain to her friends about Brooke. Kids dont understand all the jargon, nor do they want to. If we give these kids the words appropriate for their age I bet we’d see alot of empathy and understanding, rather than judgement and fear.
    Have you given any more thought to reading “Rules”?

  19. lisa – katie and i are reading it together! we just got started this week, and it’s a little slow going just based on time and her reading obligations for school, but we’ve loved what we’ve read so far! thank you for the great suggestion!

  20. Katie showed she is already strong enough for the current weight of her “friends’” question. Her answer was really good (perfect in my opinion), and yet she asked for more.

    In the mix of educating the next generation on inclusive attitudes is the fact that many children call other children much worse than ‘dumb’. Children without diagnoses. Every day. Every home and school. I’m surprised by this, but that may be just evidence of my age. The book “Childhood Unbound” helped me see this a little better.

    You’ve done well with both your daughters and show the rest of us the way, too.

  21. Jess, thank you for sharing stories like this about Katie and how siblings struggle. The other morning, my 2.5 year old said, after asking his brother the same question over and over and over again, “Brother’s not answering me. That makes me feel bad.” Wow did that sting, and I so wasn’t ready for it from a 2 year old. Granted we spend SO much time talking about feelings that I’m not surprised my 2 year old talks like an adult sometimes, but still. Just wasn’t ready. But I guess that’s one of the points I take from your story, we’re really never ready. And we have to be. so, thanks. Again.

  22. You guys are amazing, and so is Katie. I know also, how special Katie Day was to her. She told me all about how she was going to have this very special day. How much it must mean to her to be able to do whatever she wants. She’s such an incredible kid!!!!!

  23. I usually don’t link to all the stuff in people blog posts as I read them because I sort of want the post to be sufficient unto itself (in general, I’m not suggesting this wasn’t, because I could have read it without linking to anything and still love the post), but because I just found your blog recently, I’m not super well acquainted with your family’s story, and I linked.

    Katie’s blog is spectacular, and you made me get all teary again with one of the other links.

    You just really write well, and I like your approach with your girls. Our family is in SUCH a similar situation with an older neurotypical sibling in a sister-sister relationship, that it’s more difficult than usual to separate your stories from ours and your experiences to our similar experiences. Otherwise i’m sure there’d be less . . . “welling”.

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