It's Not An Adjective

1.) She's blond.
2.) The short boy.
3.) She is blue-eyed.
4.) She's Down syndrome.
5.)  The blind lady.
6.) He is deaf.
7.) The European guy.

One of these sentences is not like the others; it's not grammatically correct and it is incorrect in its usage and description.

That sentence, of course, is any variation of "she's Down syndrome/she's Downs/she is Down syndrome."

(This isn't about People First Language either: Putting the person before the diagnosis. Saying "people with Down syndrome" instead of "Down syndrome people." Because saying "She is Down syndrome." IS putting the person first).

So why is it ok to say "She's blond. She's blind. She's European." but it's NOT ok to say "She's Down syndrome."?

Because all of those other words are descriptors. They are adjectives.

Down syndrome is not an adjective. The word syndrome by itself is not an adjective either. They are nouns.

Yes, Kayla is blond, no, she is NOT Down syndrome. She isn't a group of symptoms. She isn't her diagnosis. She HAS Down syndrome and there is a difference.

You don't say "She's cerebral palsy. She's Crohn's. She's Lou Gehrig's Disease. He's spina bifida." and you don't say, "She's Down syndrome."

You describe people by their hair color, eye color, weight, height, personality, ethnicity because those are descriptors we all have. There is no box to check off Down syndrome or non-Down syndrome.

You don't describe people as their medical diagnosis. You don't say "She's Down syndrome." What does that even mean? She's not of this human race? Is that another category of the human race? It implies some kind of other-ness.

Down syndrome isn't an adjective and shouldn't be used as such.

She's Kayla. She's my blond, straight-haired, blue-eyed, strong-willed, opinionated, lovable, friendly daughter.

She has a medical diagnosis of Down syndrome.


 

Kayla Answers the Questions

Here are Kayla's answers to the questions I asked Lucas earlier:

1. What is something your mom always says to you? "Kayla's not listening. Kayla's happy listening to mom."
2. What makes your mom happy? "I clip up!" (when she 'clips up' in school meaning she had a good, great, or outstanding day).
3. What makes your mom sad? "Be bad, not listening."
4. How does your mom make you laugh? "Funny."
5. How old is your mom? "100." (then she guessed a bunch of numbers.)
6. How tall is your mom? "2 feet."
7. What is your mom's favorite thing to do? "Work."
8. What does your mom do when you're not around? "You do work."
9. What is your mom really good at? "Making lunch for me."
10. What is your mom not very good at? "School."
11. What does your mom do for a job? "Paperwork."
12. What is your mom's favorite food? "Pizza." (I think she was thinking of herself!)
13. What makes you proud of your mom? "Good job, good day." (I think she turned this around meaning I'm proud of her when she has a good day at school.)
14. What do you and your mom do together? "Homework."
15. How are you and your mom the same? "We're the same girls."
16. How are you and your mom different? "Different shirt and hat."
17. How do you know your mom loves you? "Hug, kiss good morning to school" (I think she means at the bus stop.)
18. Where is your mom's favorite place to go? "Other playground." (Again, answering for herself!)

 

Thick Skin

On March 21, for World Down Syndrome Day, I went to Kayla's school to read the book High Fives and a Big Heart to her class. I also wanted to talk a little bit with her classmates about Down syndrome and what it does and doesn't mean for Kayla. I showed them this picture of her chromosomes and explained about the 3 chromosomes on #21.

I didn't have a lot of time to talk with them, but overall I think it went well.

At the beginning I asked if anyone heard of Down syndrome and what they knew about it. A few hands went up and the first girl I called on answered that her mom told her it was when someone acted younger than their age.

Another girl - J - one of Kayla's friends from the bus and who lives down the street from us, said "It's just a thing."

I like that. Down syndrome is no big deal ... it's just a thing!

I mentioned things that Kayla can still do, things that she likes, and places she's been to show how she is similar to her peers. I asked questions like, "Has anyone been on an airplane? Who likes roller coasters? Who likes to go to the beach?" and each time I saw her classmates all glancing over to see if Kayla was raising her hand to the questions too. I hope it made them see her as more like them than different.

Then I started reading the book. It's written and illustrated by a 4th grade class about Jeffrey, their classmate who has Down syndrome. One part of the book mentions that if anyone is mean to Jeffrey they will stick up for him.

There is a boy in Kayla's class who was sitting in the first row and I heard him mumble, "I wish I had someone to do that for me." An aide in the room quietly said his name and he again mumbled, "What? I'm always getting picked on at recess."

After I finished the book the class had to line up to go to art. As they were doing this, J, the girl I mentioned earlier, walked by me and told me, "Some other kids think Kayla is weird, but I don't think that."

Ouch. She wasn't saying it to be mean. I like J. She has always been friendly with Kayla, they play together outside and she's been inside our house a few times to play. I've wanted to ask her more about that; to ask what kids say about Kayla, to ask what Kayla does that makes other kids think she's weird, but I haven't had the chance.

I also willed myself not to cry as I left the school that day. Of course it hurts to hear that other kids think your kid is weird. Of course I know not everyone will like Kayla (or Lucas for that matter). We're not friends with everyone in our class and it's not realistic to expect that. I know kids can be made whether you have special needs or not (and I was reminded of this fact when I thought about the boy who mumbled out while I was reading the book about wishing he had someone to stick up for him.)

But as a parent your heart still hurts for your child.

I wrote about this experience and how parenting requires thick skin on the website What to Expect. You can read more in my article How My Daughter Helped Me Grow Thick Skin.

 

Questions to Ask Your Kids

I came across this list of questions to ask your kids and thought it would be fun to hear what answers my kids came up with.

Here are the questions with Lucas's answers:

1. What is something your mom always says to you? "Clean up, get dressed, get your backpack."
2. What makes your mom happy? "Flowers."
3. What makes your mom sad? "I don't know."
4. How does your mom make you laugh? "When you're silly."
5. What was your mom like as a child? "I don't really know what you mean."
6. How old is your mom? "38." (Close. 39.)
7. How tall is your mom? "We haven't measured you so I don't know."
8. What is your mom's favorite thing to do? "Clean the house."
9. What does your mom do when you're not around? "I don't know cause I'm not around!" (This was my favorite answer.). Then he continued with, "Vacuum sometimes, clean the dishes."
10. If your mom becomes famous what would it be for? "Hmmm."
11. What is your mom really good at? "Putting pajamas on."
12. What is she not very good at? "I don't know, you're always good at something."
13. What does your mom do for a job? "Write things."
14. What is your mom's favorite food? "All kinds of food what you eat. I don't know. That's a lot of I don't knows!"
15. What makes you proud of your mom? "That you're nice."
16. If your mom was a cartoon character who would she be? "A fast writer."
17. What do you and your mom do together? "Watch TV together, but I don't know if you're actually watching it." (Actually, we rarely watch TV together.)
18. How are you and your mom the same? "We're not the same. Why does it even ask that question?" (My other favorite answer.)
19. How are you and your mom different? "We don't have the same hair."
20. How do you know your mom loves you? "Because it's in both of our hearts." (love this one too.)
21. Where is your mom's favorite place to go? "Maryland."

 

Kayla's Runway Debut

Last week Kayla and I drove to Maryland for the Global Down Syndrome Foundation's Be Beautiful Be Yourself Gala and Fashion Show in Washington DC. Kayla was one of 25 models with Down syndrome who walked the runway with guest escorts.

Humor on our drive: As we were driving through VA we were stopped at a light when I noticed sign pointing out George Washington's birthplace to the right. I told Kayla, "Oh look! Remember learning about George Washington? The president? That sign says he was born here." Kayla looked at the corner on her right and said, "Here? At CVS?" Also: It's an 8 hr drive. She woke up from a 20-minute nap saying, "Whew! That's a long nap!"

We had such a fun time last week. Kayla tried on several dresses and she chose this one because of the way it twirls. She loves to twirl in a dress and this dress was a big hit to her.



She had her hair curled, a smidgen of blush and eye shadow applied, nails polished, and her pretty purple dress on ... she was ready to go!



Her escort was GDSF Spokesperson and Supermodel Beverly Johnson. (Here are a couple of pictures from the professional photographers of Kayla meeting Beverly Johnson and walking the runway.)





After the fashion show the crowd enjoyed listening to Sheryl Crow perform several songs. The models got back up on the stage and danced the night away. (Here is a picture of Kayla with Sheryl Crow.)



I was so proud of Kayla! She's never done anything like this before (the closest thing would be the one dance recital she was in last year). Yet she seemed so poised and confident walking that stage! Albeit a little faster than I think she was supposed to ... as you'll see in the video she lets go of Beverly's hand as if to say, "I got this! I can do this myself! I know what I'm doing!"



You can read more about the gala in the article Global Down Syndrome Gala a Huge Success and Supermodel Spotlights Down Syndrome.

There were several representatives from the NIH there who heard, more than once, how Down syndrome is one of the most common genetic conditions, yet the least funded. Hopefully funding for Down syndrome research will increase.

What a great night!

On the Catwalk

Last month we went to Washington DC so Kayla could audition for the Global Down Syndrome Foundation's Be Beautiful Be Yourself Gala.

This week we'll be back in DC as Kayla was selected to be one of the models  to participate in the fashion show at the Gala!

Here is an article from Michelle Sie Whitten, mother of a daughter with Down syndrome, and the Executive Director of the GDSF: Models Change Perception.

I'm so excited to attend this event with her. She's been telling everyone she's going to be in a fashion show. This will be her first experience 'on the catwalk' so I'm crossing my fingers that all goes well!

 

Tell God

Homework with Kayla can be frustrating. When I start to read over her textbooks and explain new concepts and vocabulary words to her, she tunes me out. Completely. She'll carry on with another conversation, be distracted by every single thing, and avoid whatever I'm talking about. I ask her a question about something I just read and she looks at me as if she has no idea what I'm talking about. She didn't hear a word I said. I'm left feeling like I was talking to the wall.

Monday didn't start off too well. I looked in her daily planner and immediately felt overwhelmed.
- Do Math problems on 4 pages
- Probability Quiz tomorrow
- Sound Study Guide
- Reconstruction Study Guide
- Reconstruction Test tomorrow

How was I ever going to get through all the homework and review for the quiz and test they were taking the next day?

Needless to say it didn't take long for the frustrations to set in. To be fair it wasn't all her fault...it was my own frustration at being overwhelmed with all I was attempting to get done with her.

At one point, when I was getting beyond frustrated at talking to the wall, but wanted to keep my cool, I clasped my hands together and took several deep breaths to calm down. Then I just started talking out loud, "Oh please dear God, please help me with this. Please give me the patience I need. I seriously need some patience. I can't get through homework time like this. Please help me to have some patience."

(*Side note: I don't think you will ever, ever, hear me claim that having a child with special needs has taught me the great lesson of patience. It's been almost 10 years and that lesson continues to elude me. I wish I could be one of those parents who say parenting a child with special needs has taught them to be more patient, but I would be lying. I fully admit to that character flaw- being impatient).

Both kids stopped what they were doing and just stared at me. Since I now seemed to have Kayla's full attention and her eyes on me, I continued to ask her the question about the Emancipation Proclamation I had been trying to ask her. And that was, 'Who did the Emancipation Proclamation free?' and she said, "Slaves." and I screamed in excitement, "Yes! That's right! The slaves!" and I was happy and smiling and laughing and praised her for retaining that information (we hadn't reviewed the Civil War recently as we were now on the Reconstruction of SC, so I was happy when I went back to something from the Civil War that she remembered it.)

We finished up SC History and took a break. A while later we were back at the table going at it again and getting somewhere. She was focused and paying attention and answering questions. Then Joe came home. The kids jumped up from the table to greet him at the door. As Kayla did this I yelled out, "No! Kayla I don't want to lose you!" (Meaning, of course, her concentration). It took me several minutes of trying to talk her back to the table and me lamenting, "Great, now I've lost you."

The next night we were eating dinner when Joe got home from work. The kids again jumped up from the table. This time, as Kayla started to get up from her chair she put her hand on my leg and very gently said to me, "Don't lose me. You don't lose me Mom. I be right back."

Yesterday Kayla was getting ready for school and was fixated on the fingernail polish that had come off one of her nails. I was trying to keep her on her routine and reminding her to go to the bathroom so she could brush her teeth and then get dressed. She kept focusing on the nail polish. I tried acknowledging it and told her I would reapply after school. She wanted it done then. I told her there wasn't time. I kept telling her to go to the bathroom. She kept pointing out the missing nail polish on her finger. Back and forth we went. I wanted to scream out, "JUST GO TO THE BATHROOM ALREADY!" (*See above about patience).

I didn't yell though. I once again clasped my hands together to avoid pulling my hair out, took a couple of deep breaths, and turned my back on her. I was hoping if I stopped nagging her about using the bathroom and didn't pay attention to her she would just go to the bathroom.

Instead she broke the tension with, "Tell God, Mom, tell God."

 

Shape of the Eye (Updated) Giveaway

Congrats to the winners: Brianna and Astra!

The Shape of the Eye, by George Estreich, is one of those unique, must-read, memoirs that takes the reader on a journey of the past, and makes the reader think about how we got to the present, in terms of society's perceptions on people with Down syndrome.

I did a review and giveaway of this book back in Oct 2011, and another giveaway in Oct 2012. This book has just recently been re-released in paperback and I am hosting a giveaway for 2 winners.

The paperback has an afterword that updates readers on Laura (George's daughter), and the rest of the family, since the hardcover was released. George also discusses some societal quandaries that have come up with the advances in technology, science, and research.

Parents.com recently did a Q&A with George (although I did cringe at the lead-in describing "...his Down syndrome daughter..." instead of the use of people-first language); and The Shape of the Eye gets a 4-star review and "Pick of the Week" in the April 29th edition of People Magazine.

If you would like to win a copy of this Oregon Book Award Winner, please leave a comment (making sure I have a way to contact you). Contest open to those in the US and Canada.

 

Conversations With Lucas Part II

"I wish I could have that dream I had last night, or maybe the night before, or the night before that."
M: "Oh? What was it about?"
L: "I don't remember."
(Laughter from me)
"If you don't remember what the dream is about why do you wish you could have the dream again?"
"I just do. I remember some things."
"Was it a good dream?"
"Not really."
(Laughter, again.)
"You wish you could have the dream again, but it's not really a good dream, and you don't remember what it's about?"
"I said I remember some things."
"Ok, what things do you remember? What can you tell me about it?"
"I don't know."
After some thinking he just says- "Dreams are liking reading a book."

L: "I want to have a pair of rocket boots."
Me, "Have you seen those on someone?"
"No, but you put them on your shoes and they lift you off the ground and you can fly. That's what I want."
"I've never seen those before, I'm not sure where I would buy them."
"They are kind of like planes, but for your shoes. They just lift you off the ground and you stay in the air."
"They sound neat."
"They have this green thing on the back and it spins around and has things on it and then it gets smaller."
"So you've seen them before?"
"No."
"Then how do you know what they look like? How do you know it has that green thing on the back?"
"I'm just guessing."

Kayla got Lucas a scented marker for Christmas. Lucas got 'scented' and 'sensitive' mixed up and started calling it a 'sensitive marker. One day he was using this marker when Joe noticed a green mark on his thumb. Lucas told him it was from the 'sensitive marker' then said, "Do you think I'm sensitive now? Do you think I have a sensitive thumb?"

Lucas, "I want to grow bigger so I can have a kid. Who is going to be my kid?"
You haven't had your kid yet so I can't tell you who is going to be your kid!
L: "What is his name?"
I don't know, you have to name your kid.
L: "Why do I have to name him?"
What are you going to call him, hey kid?
L: "I'm going to name him Lucas!"


I know what I want to get Kayla for her birthday. A plane ticket to MD!

The kids were playing 'castle' with Joe. Joe says he's the king because he has the crown. Lucas says he's not a king because he doesn't have a heart. Joe says kings don't need a heart. Lucas says, "Yes they do because I'm a king and I have a heart!" Joe asks him what his heart is for and Lucas says "God!"

Kayla runs upstairs to get her socks and Lucas says "Go get your socks! Go get your poop-head!"
Joe, "Lucas..."
Lucas, "How did that just pop out of my head?"
Me, "Don't you mean how did that pop out of your mouth?"
L, "No, all the words are in my head and I was going to say socks so I don't know how that popped out of my head. I have a wall around those words."
Joe, "I guess you better build that wall a little higher."

"A big spoon is almost the same as a little spoon, but it's bigger. And has a bigger scoop."

"Kayli is 4 and I'm 4 so we're like twins! But with different moms and different houses."

L, "Dad said I could play the Wii until 10:00."
Me, "I don't know what you're talking about Lucas, you're in school at 10am and you're sleeping when it's 10 at night."
L, "I just made that up."

Speaking Her Mind

I was walking through the mall with Kayla when she tuned in to the conversation taking place behind us. I wasn't paying attention so I don't know what exactly they were talking about. I did hear one lady say something like, "I thought I was dying." or "It felt like I was dying." or "I was dying." Some variation of that figure of speech.

Kayla turned around to this lady and emphatically told her, "You not dying!"

Then we were in line behind a younger lady who was sporting a short mohawk hairstyle. Kayla wasted no time in pointing this out. Literally. She pointed at her and said amusingly, (and in what of course sounded like a very loud voice) "She has a mohawk!"

She was amused by the hairstyle and was very matter-of-fact about it. The young lady turned around and smiled at Kayla and Kayla smiled back.

Hopefully she'll turn her confidence in speaking her mind in to becoming a great self-advocate!