Monday, March 01, 2010

A Letter To You

My sis-in-love asked for some information for a lesson she was giving to the Young Women in her Ward. I ended up writing a letter to them and to all of you. Please feel free to pass it along.



Dear Kimberly, Young Women, and Blog Readers,



I have an incredible 7 year old daughter. She is smart, funny, and a wicked Wii player. She loves to read, talk on the phone with her friends, and host parties. She loves to dance. Oh, how she loves to dance!
Does she sound like you?

She also has Down syndrome.
The week she was born was one of the most spiritual of my life. It was like have 7 days of temple experiences. I can't share all that happened - it's too sacred and close to my heart. But I can share this: through priesthood blessings given to my daughter and myself, we know that my daughter has been sent here on a mission. Her calling is to be a teacher to every person with whom she comes in contact. She teaches patience, understanding, how to slow down and find joy for simple things, and unconditional love. We also know that she was sent to our family, not because we are an amazing family (we definitely are not), but because we needed her.

The instant she was born, I lost my immunity to the 'R' word. I"m sure you've heard the 'R' word used as a substitute for the word 'stupid'. As in "Oh, that was so retarded! I can't believe you did that." "This class is so retarded" "Don't be such a retard". "I'm so retarded sometimes." It was a word I knew was wrong and was never in my vocabulary. But I didn't really hear when others used it. I was immune. Yet, when my daughter came into my family, the 'R' word became offensive and I heard it everywhere. the word retarded means slower, to delay, or impeded or delayed progression. Not stupid. Yet that word is used in place of stupid, and it is a an insult to my daughter and ever other child of God who has an intellectual or developmental disability. It has become so offensive that there is a grass-roots campaign to remove it even from medical texts. If you say the 'R' word in my presence I will ask you to change your vocabulary. Many times, the person saying it doesn't realize how offensive it is to many people. My daughter is not stupid, yet that word perpetuates the idea that retarded and stupidity are synonymous. They are not. If you say the 'R' word, please, please, PLEASE stop. Better yet, pledge to stop and spread the pledge to others. You can find the pledge here: http://www.r-word.org/.
People like my daughter are referred to as a person with a disability. She is not the Downs kid. She is a 'girl who has an intellectual disability'. Referring to the person first and disability second is called People First Language. My daughter's disability is only part of who she is.

I want for my daughter the same things you want for yourselves. I want her to associate with friends and have all the experiences typical girls have. But that is hard. She has only once been invited to a birthday party outside of family and our Down syndrome community (she loves birthday parties as much as she loves dancing). Rarely is she invited to hang out with other girls her age. People just don't think to include her. I worry about when she becomes a teenager. She'll want to go to the movies with friends. Will anyone think to embrace her in their group? She'll want to date and go to school dances. Will anyone ask her out? She already wants to do what she sees her friends do. Everyone sees her disability and not the person she truly is. Or they might be intimidated by her looks, the way she speaks, or her mannerisms. They are missing out on getting to know an incredible person. Her spirit will astound you, but you can't see it if you don't gather up your courage and get to know her.
Don't know what to do or say? not sure how to handle a situation with her ( or any other person who has a disability? Ask! Please ask your questions. If you are afraid of offending me with a questions, go ahead and tell me you worry about offending me and ask the question anyway. Most parents will agree with me here. We know some things will just sound awkward. It's okay. I want you to feel comfortable around people who have disabilities. All of your questions will help you to grow closer to my daughter.
My daughter's nickname is The Love Magnet. She will hug you. She will cheer when you win a Wii game, even if she has lost. She will notice when you are sad. She also has feelings of sadness, frustration, and inadequacy. She knows when she is being snubbed although she doesn't understand why. She knows when people are teasing her and she will tell them "That's not nice!"
The Love Magnet is the bravest person I know. She has been in and out of hospitals and doctor's offices. She has never cried over having a shot or bloodwork - she will hug the doctor or nurse and tell them not to feel bad. She has endured open heart surgery. She shows new doctors where to put the stethoscope and even warms it up for them before they use it. She knows what to do with blood-pressure cuffs, otoscopes, and oximeters. She endures therapies. She is on a first name basis with pediatricians, cardiologists, rheumatologists, orthopedic surgeons, dermatologists, speech-language pathologists, occupational therapists, physical therapists, and developmental therapists. She gets tired of all the "-ists" the way you get tired of homework overload. See? Yet another something-in-common you have with my daughter.

Someday my daughter might be......anything. I wouldn't dare put a limit on the potential of a daughter of God. Heavenly Father has constantly reminded me that his plan is the best plan. this plan involves putting teachers among us. People whom we normally wouldn't listen to because they don't look, act, or think like our expectations of what a teacher should be.
Teachers like my daughter.

God bless you all,

Scarehaircare
Mom to The Love Magnet

13 comments:

Kristin said...

Wow - that is INCREDIBLE!! I want to share it with our Young Women & Young Men... :)

Derek, Kenzee and Gage said...

So well written, I love the letter! My mom taught the same lesson in YW and took the same approach to the R word. What a great way to make the girls aware about the words they are using!

Soozcat said...

Very well said, Carrie. You have four fantastic kids, and each one has something unique to offer the world.

goingtogoal said...

WOW Carrie! That is the best thing I have ever read! I want to share it with everyone I know. Do you mind if I share this on my blog and/or create a page on my website? Just let me know.

Love to you and TLM,
Laura

Al, Wendy, Max, and Lil said...

I loved this Carrie. I, too, tell people to change that word (and "gay", too) as it is so offensive. My awareness came almost 20 yrs. ago because of my friend Greg (with D.S.) but I hadn't gotten really good at asking people until Al became director of disabilities. It's funny, it didn't occur to me that "L" would even be called that! Once you know her she is just "L"!

Scarehaircare said...

YES! share, link, post, spread the word.

Sooz - watch for upcoming posts about each of the boys and how they have grown because of The Love Magnet. BTW, I have a few others who have asked that Flat Love Magnet Come visit them. I hope you don't mind sharing. I know FLM has had a blast visiting you. :)

Lincoln Farrell and Marilyn Barlow said...

Thank you sweetheart. You have a quest and you are tipping windmills all over the place. love you

Christie said...

You. are. awesome.

love, your Fav Sis

Tammy said...

Thank you for this.

Thank you.

And promise that the next time you are in Utah we can get together?

Tammy and Parker

Scarehaircare said...

I've had more comments but, unfortunately, they included the names of my kids. Please understand that I read and value every comment, but if they include the name of my children I will not post them. I surely do love hearing from you all.

Tammy - promise!

Anna said...

I love her...what a cute little girl. Wish you lived closer so we could see you all. I really wanted to make it up to visit you in Idaho--but now with a little baby on the way it may be a while.

I hope your family is doing great. :)

Shanon said...

We should move close to each other. No, you don't know me, but I have the perfect friend for TLM. He is a 7 year old bundle of cuteness. They could become friends, play together, come to each other's parties, and go on dates when they are teenagers. We were given the same blessing as you were...a special little guy with Down Syndrome. What do you think? :)

Scarehaircare said...

Shanon - what a cute guy! I'm all for setting up some play dates and later on, some real dates.