“The word retarded is offensive to me, my son has Down syndrome. Please refrain from using that word to make fun of yourself. It is disrespectful to people with developmental disabilities. Thank you.

She did write me back during the webinar ( just a few moments ago) to say she was sorry about that and that she will [refrain].

I wonder if that moment between the two of us will make a difference the next time she thinks of using that word? I have no idea. But for me, it’s important to advocate for my son and others who have intellectual disabilities.

I know that most people have no idea that the word “retarded” could really be hurtful. And just so we are clear, I used to use that word myself. I had no clue. I wasn’t ever told that the word could be hurtful. I had never made the connection. It just seemed like a word used to make fun of myself.

However, on February 4th 2009, my understanding of the word changed when I gave birth to my son Max. I learned early on that the way the word retarded is used really does hurt people. I realized it was up to me to share the information. It was up to me to change my own language. It was up to me to advocate for my son. I don’t get angry when someone says it… well maybe a little. Mostly my heart sinks because I know I need to say something to advocate for my son and it’s not always an easy thing to bring up. Some people get defensive, argue with me and feel the need to tell me I’m wrong. I usually just say to someone “ouch, that word actually hurts me when I hear it.” It’s a new experience every time I hear it. I’ve learned ways to be helpful instead of being mean to them. That never works. Trust me. I have to remember not to take it personally, but to use the opportunity to educate with a loving and understanding heart.

The other day I had to take my son to the doctor to check his ears for infection. When the doctor came in to see him, he said “Oh you have a Downs.” I hear this a lot and it makes me shudder. No actually, I have a son who has Down syndrome. Not a “Downs,” or a “Downs baby.” It’s a shift in language that puts the individual first and the diagnosis second. My son is not his diagnosis. He is an incredible little boy with a lot of unique characteristics that make him who he is. Another example would be if someone called my friend who has cancer a “Cancer girl.” Or a “Cancer.” No she is not the diagnosis. She is a girl with a name who happens to have cancer. It’s the same with children and adults who have autism etc. Language Matters.

“Spread the Word to End the Word” Is a message that I feel strongly about. John C McGinley from the tv show Scrubs shares his feelings about the word retard and retarded in this video. He too has a son named Max who has Down syndrome.

I’ve made the commitment to replace the word “retarded” with the word “ridiculous”. Won’t you join me?

-Catherine Just is an award winning, published photographer gracing the cover of National Geographic and inside Oprah.com. She leads Soul*Full retreats for women and the Soul*Full eCourse. She’s also the proud mama to her son Max Harrison who happens to have Down syndrome.
You can find out more on her website at http://www.catherinejust.com or on Max’s Blog http://www.hang-on-little-tomato.blogspot.com

For more information on Down Syndrome:
NDSS

But there was something in the article that I did agree with. The author said that overcoming a challenge provides a boost in confidence for young people.  I agree entirely.  She also wrote about the fact that Chinese mothers are willing to spend hours and hours tutoring, drilling, and helping their children with challenging lessons.  And I began to wonder, are we western mothers willing to do the same?  Would I sit down with my daughter for as long as it took her to learn her multiplication tables?  To be perfectly honest, I had to answer “maybe.”

As I considered the subject further I realized that I do know lots of parents who I think rely too heavily on computers and television to teach their children.   What if we were to take our American ingenuity and work ethic and apply it to the job of teaching our kids?

Your challenge this week is to get down in the trenches with your child and really support him in the skill or ability he’s most struggling with.  By being physically present as he struggles, you’ll let him know that you’re there to support him.  You can encourage, help, and model for him, and then sit back and watch him work.  Try not to be too chatty as your child tries to concentrate, just be present and available to help if he asks.

If you’re not sure what skill your child is struggling with, then start by asking other people who know your child.  Often teachers or childcare providers can give you fascinating new insights into your child.  Next, observe your child for a day or so and finally, come up with a few activities you think your child can do, but that will be somewhat challenging.

Now the real fun begins.  Pay attention to the ways you encourage your child.  Notice the urge to do it for her as soon as she gets frustrated.  And make a commitment to help and support your child in learning to do it herself.  Remember that learning is a process that can take time, so don’t expect your child to master tying his shoes the first day.  Instead, expect the new skill to develop over a period of days and even weeks.

Also, be aware that many young people will revert after learning a new skill, especially if they are extra tired or upset about something.  Practicing patience and being a yes to whatever is happening will help you weather the storm together.  “Wow, you were able to do that yesterday, but today it seems even harder!  I believe in you.  I know you can do it.  And I’m here to help if you need me.”

I can’t wait to hear how it goes!  Please share your experiences with us by leaving a comment.

Have a wonderful week!  Warmly, Shelly

“I hate you!”, “I hate you both!” (to his dad and me), “You’re making me starve!” (when I won’t cook a second or third dinner) and “You’re a poo-poo head!”

I hadn’t heard these things from him until recently.

Well now, the “poo-poo head” is getting to have her say. Read on.

I have to admit, these new things he’s saying are taking me aback. Mostly I think it’s because there’s a level of directedness toward me that wasn’t there before. It’s hard not to take it personally and react accordingly.

Maybe if he were a real leopard cub, he’d be going “RRAAHHhhrr,” and I’d be extending a big fat mama lion paw in response.

But here in the human world, I found myself stuck. So…

I signed up for a parenting coaching session with Shelly . I was having a hard time putting into practice what we preach talk about here at AwakeParent.com.

She helped me to look at my son not as an adversary, but as someone moving from being a little boy to being a bigger boy—someone who needs my help to do this. She reminded me to tune into with his needs for autonomy and connectedness.

She also reminded me of something I know intellectually but find it hard to remember when a little being is yelling at me and slamming doors…

Assume positive intention, or, as Marshall Rosenberg puts it, “Violence is a tragic expression of unmet needs.”

Everyone, no matter what we’re doing, is always trying to make life go better, however misguided our actions might seem. If nothing else, when I keep this in mind, I’m more likely to feel compassion rather than anger toward my fifty-pound maverick.

Shelly also reminded me that this is my son’s best attempts at meeting his needs.

I prefer this story to “He has it in for me.”

If I remember how lovely it feels to connect with him, and how things can flow when we’re playing together, or even just taking a walk or a drive, I can see that, even in the throes of harsh words and actions, he is doing his best.

Five and a half years is not a very long time to gain a mastery of anything, let alone the art of being human. I have nearly forty years on him, and I can still fill several pages with things I wish I hadn’t said or done.

Finally, when my son is at least calm enough to interact, I can sometimes remember to ask him what he is needing and wanting.

For example, after refusing to pull his shoes onto his feet, and insisting I do it instead, I asked him, “Are you wanting to feel loved and cared for?”, remembering that this has been a need he’s revealed in the past.

When I asked him, he softened.

He still wanted me to put the shoe on for him, but at least I introduced the concept that I can tune into his needs without necessarily agreeing with how he goes about meeting them.

Sometimes, in the past, I have said something like, “I can understand that. I love you and care for you tremendously, and…I am busy with something else right now, so I’m going to let you refill your water glass yourself.”

As Shelly mentioned in her Steps to a happier family post last week, it’s not so much whether our guesses are 100% accurate, but that we care enough to tune in and guess at all. This is what will build connection and trust.

Warmly, Jill

P.S. Have you been feeling challenged with the young ones in your life? We love to hear about it. Share your stories and thoughts below in the comment box…