Big Blueberry Eyes

Thick Skin

2013-05-17T10:00:00.001-04:00

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

2013-05-15T14:43:00.001-04:00

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."
21. Where is your mom's favorite place to go? "Maryland."

Kayla's Runway Debut

2013-05-13T11:52:00.000-04:00

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

2013-05-06T10:21:00.000-04:00

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

2013-05-03T10:13:00.001-04:00

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

2013-05-01T11:10:00.001-04:00

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

2013-04-29T22:08:00.000-04:00

"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

2013-04-26T11:22:00.000-04:00

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!

Dignity of Risk

2013-04-23T12:57:00.000-04:00

ESNP has an interesting video about Garrett, a young man with Down syndrome, and his training leading up to his first MMA fight.

Overall I thought they did a great job reporting this piece on Garrett, but I wish there wasn't the need to report that "Garrett is very highly functioning for someone with Down syndrome. He reads at the 3rd grade level and has the cognitive ability of an 8 or 9 year old." I didn't think that had relevance to his journey of participating in his first MMA fight. (The highly functioning for someone with Down syndrome bit I'll save for another blog post.)

I thought it was sad to hear that while growing up he didn't want to have friends, or associate with, any one who had Down syndrome or other disabilities. He didn't want to be called Garrett because Garrett was someone who has Down syndrome. We have talked to Kayla about having Down syndrome, she knows she has Ds, but I don't think at this point she grasps exactly what that means or how that affects her. I am trying to prepare myself that one day she may express being upset about having Down syndrome.

Garrett's father said a lot of people gave him a hard time for allowing Garrett to participate in this fight. I loved that he gave Garrett the opportunity. It's called the "dignity of risk" - “Dignity of risk” means respecting each individual’s autonomy and self-determination (or “dignity”) to make choices for himself or herself. Garrett trained for the fight and wanted to get in the ring; they found a fighter with the same height and build who agreed to fight him.

Garrett's reaction time isn't as quick as his opponent; I liked that his opponent didn't take advantage of that situation. He legitimately landed some punches and slams on Garrett ... as did Garrett to his opponent.

I thought the ending was a great wrap-up showing Garrett's journey of self-awareness and self-acceptance.

Ready for Kindergarten

2013-04-17T14:54:00.001-04:00

As we were nearing the end of Spring Break I tried to prepare the kids by telling them that they were going back to school in a couple of days.

Lucas thought that the break from school meant that when he went back to school he would be in Kindergarten, "So when we go back to school I'll be in Kindergarten?!"

He was disappointed when I said no.

He wants so badly to be riding the bus and going to the same school as Kayla. I told him, "Soon enough and you will be!"

He told me he doesn't need to go to preschool anymore and that he is ready for Kindergarten now.

I told him to enjoy these last few months before Kindergarten starts, because then he'll have to wake up at 6:00 like Kayla does and won't be able to sleep in past 8. I reminded him that he will be at school ALL DAY and not just the 4 hours that he is now. I also reminded him that he is home every Friday with me since preschool is 4 days a week and that in Kindergarten he will be in school on Friday, too.

He still says he is ready for Kindergarten.

I agree, but stop growing up so fast, will you?

Making the Pizza

2013-04-15T12:28:00.001-04:00

The kids were going to Friday Fun Night at a local church and pizza was being served. On his way home from work Joe stopped by the commissary to pick up a frozen, gluten-free pizza for Kayla.

When he got home he put the pizza in the toaster-oven.

A few minutes later Kayla came downstairs and saw the toaster-oven was on and the pizza box sitting on the counter. She got excited and said to me, "Mom you making my pizza?!"

Since Joe was actually the one who put it in the toaster oven I just said to her "No, I'm not making your pizza."

She held up the pizza box, emphatically pointed at it and said, "YES! This pizza right here. That's my pizza! You making me pizza."

With a smile on my face, I again said, "No, I'm not making your pizza."

She looked at me for a few seconds, then she looked at Joe who was standing quietly in the kitchen, and exclaimed, "DAD! YOU making my pizza!!" and she laughed.

Typing this out, and reading it, I realize how absolutely insignificant that conversation sounds. But I kept saying to Joe that I loved that she 'got it.' She got that I was making a little joke; that I wasn't denying that pizza was being made, just that it wasn't me making her pizza.

I don't know if that was analytical or critical thinking skills, but whatever it was, it was one of those moments that, as a parent of a child with an intellectual disability, you celebrate. Even if the celebration was small - a knowing look between spouses, a smile left in your heart.

Caricature

2013-04-11T21:43:00.000-04:00

I took the kids to WonderFest last weekend and couldn't resist the opportunity to get a caricature done of them.

The first thing Joe said when he saw it was that the image of Kayla looks like it could be of me! I think this makes her look older.

(speaking of older ... here is her Spring school picture ... she does look so mature and older in this picture!).

Kyle Petty's Charity Ride for Victory Junction

2013-04-09T07:53:00.001-04:00

This year marks the 19th year of the Kyle Petty Annual Charity Ride. Former NASCAR driver Kyle Petty, along with Hershel Walker and 175 others, will ride their motorcycles 2100 miles from Couer d'Alene, ID to Tempe, AZ.

The Victory Junction Gang Camp is the main recipient of this annual charity ride. Victory Junction provides week-long camps during the summer, and weekend family camps during the Spring and Fall, to families who have children with chronic medical conditions or serious illnesses.

The estimated cost of sending a child to camp is $2,500, yet families incur no cost (except transportation to get there) thanks to generous donors. Since the charity ride started in 1995 more than $15 million has been donated to Victory Junction and other charities that support children with chronic illnesses.

Our family experienced this wonderful camp a couple of years ago for one of the Fall family weekends. I was so impressed with everything that was provided for the families throughout the weekend.

I was seriously considering sending Kayla there this summer for the Neurological and Genetic Disorders camp; but the summer application deadline was April 1st. Bummer! Just when I worked up the courage to let her go without me for a week!

You can keep up with the Kyle Petty Charity Ride through FB.

Be Beautiful Be Yourself

2013-04-03T11:01:00.000-04:00

A couple of years ago the Global Down Syndrome Foundation, based in Denver, expanded their Be Beautiful Be Yourself Gala Fashion show to Washington DC.

This gala is a fundraiser benefiting the Linda Crnic Institute for Down Syndrome (the first academic home for Down syndrome research in the US.)

An audition was held last month for the DC gala. While we aren't exactly close to DC (it's about an 8 hr drive for us) I've been hoping to get Kayla involved in this gala; and my mom lives just outside of DC. So I took the kids for a very quick weekend trip to DC so Kayla could audition.

Waiting for the audition to start:

For never having done this before, having no idea what to expect (or what was expected of her), and getting the instructions right before auditioning...I think she did pretty well!

and she had fun, too!

We won't find out if she's in the gala until later this month. Either way, it was a fun time and I'm glad I made the trip up there for her to audition.

The Death of Robert Saylor

2013-03-28T21:08:00.000-04:00

Robert Ethan Saylor, a young man with Down syndrome, passed away at a movie theater in January. He had been there with an aide watching Zero Dark Thirty. After the movie ended he wanted to see it again. A theater employee told him he needed to leave the theater and buy another ticket if he wanted to watch it again.

He refused to leave the theater; at some point his aide left to get the car, and the theater employee called mall security. Three off-duty police officers working as security guards arrived. Witnesses say when they tried to remove him from the theater he verbally and physically resisted those attempts.

The situation escalated and Mr. Saylor ended up on the floor, on his stomach, and handcuffed. The officers say he was only down on the floor for 1 or 2 minutes and they noticed he was having trouble breathing and took the handcuffs off. Attempts to revive him were unsuccessful.

The medical examiner's findings were that he died of asphyxiation and ruled his death a homicide. The police department had an internal investigation. A recent grand jury rejected criminal charges and decided no crime took place.

How can a man die on the floor of a movie theater and no one is charged? No one is held accountable?

I'm not saying nothing should have been done in the situation. I'm not saying he should have been left to watch the movie again without paying. Just because he had Down syndrome doesn't mean he should have received a free pass to do what he wanted to do.

But the situation didn't have to get out of control like it did. He didn't have to die. A little patience? A little common sense?

Reports say his mother was on her way - whether the police officers were made aware of that fact or not, I don't know.

The grand jury proceedings are secretive in Maryland, so I don't know what the 17 witness statements showed, but a few articles have quoted a witness as saying Mr. Saylor was saying he wanted his mom. Surely these officers could see that he had Down syndrome. Surely they could conclude he had an intellectual disability.

According to this article, it states "Law-enforcement manuals say never to leave suspects handcuffed on their stomachs, because the risk of sudden death by asphyxiation is too great." Yet Mr Saylor was left for '1 or 2 minutes' in that exact position.

The National Down Syndrome Congress, released this statement after a meeting with the Department of Justice and various other agencies, saying that Mr. Saylor's civil rights were violated and also called for an independent investigation.

Please consider signing this petition requesting an independent investigation.

Molecular Roots of Down Syndrome Unraveled

2013-03-27T18:18:00.002-04:00

Researchers have discovered the cause of impaired learning and memory in individuals with Down syndrome. A protein called SNX27 is at the root of the decreased cognitive function. A person with an extra 21st chromosome produces less of the SNX27 protein which disrupts brain function.

It sounds so fascinating that they have been able to pinpoint the why and where of cognitive deficits -explicitly to this protein.

Further research has shown when this protein was restored in mice they showed improved cognitive function and behavior.

How exciting is that?!

For people who don't have 20/20 vision they can wear glasses, contacts, or have laser eye surgery to improve their vision. For people that have hearing problems they can, if appropriate, have a cochlear implant, or wear a hearing aid, to improve their hearing. Now science could be on the cusp of figuring out how to improve cognition and memory for people with Down syndrome. It's the same thing - improving their quality of life. I think it's so wonder that research is being done on this subject at all.

We aren't talking about a cure here; this just could be something that has the potential to help people with Down syndrome have improved cognition and that could help them in so many different ways in their lives.

Kayla struggles so much with academics ... if they found a way to tweak that for her? To bring that protein back to typical levels? Oh the possibilities...

This will be research I hope to hear more about in the very near future.

A Fact, A Fallacy, A Photo

2013-03-21T12:22:00.001-04:00

A Little Moxie is hosting a blog hop for World Down Syndrome Day: 3 for 21.

The instructions are easy:
Post a fact
Post a fallacy
Post a photo

These can be "related to Down syndrome, to the spirit of inclusion, advocacy/awareness."

Fact: People with Down syndrome are not always happy. They are individuals with a wide range of emotions. Example: Yesterday morning Kayla was not happy with me at all when I said she couldn't wear flip flops to school. This morning she was mad that she couldn't wear gloves (because I have no idea what she did with them) and was refusing to get up off the floor and walk to the bus stop. She has feelings beyond the range of being happy and content with everything in her life.

Fallacy: People with Down syndrome can't learn, or reach a plateau and stop learning. (Hint: Just like everyone else they'll only reach a plateau if not given an opportunity to learn.).

Here is Kayla reviewing what she learned about the Antebellum Period:

Make a video - it's fun, easy and free!
www.onetruemedia.com

And a picture of Kayla:

Who I Am

2013-03-21T08:00:00.000-04:00

The International Down Syndrome Coalition for Life's campaign for WDSD is "Who I Am" - based on a song by Sarah Conant.

When I asked Kayla, "Who are you?" She said, "I'm Kayla!"

So there you have it. She's Kayla. Just Kayla.

But if you asked me who she is I'd say (besides the obvious of being my daughter and a great big sister) I'd say she's an almost 10 year old girl who is:

loved
valued
wanted
included
friendly
funny
creative
imaginative
strong-willed (because that sounds more positive than stubborn!)
confident
independent
defiant
moody
challenging
opinionated
adventurous
determined
world-traveler (we went to Denmark and Sweden last summer)

I'd tell you that she likes
popcorn
cereal
pizza
ham
cheese
yogurt
sleep-overs
roller coasters (she doesn't get that from me!)
water parks
beaches
playgrounds
being outside
roller skating
movies
hotels (she's always saying "I want to go to a hotel to sleep.")
friends
drawing
painting
going to the ballet
playing dress-up

That's Kayla. She is who she is and that's all she needs to be.

Here she is all dressed up when we went to the ballet to see Snow White.

Enjoy this video, set to the song of Who I Am...

Awareness, Acceptance, Advocacy, Action

2013-03-20T14:57:00.000-04:00

Tomorrow is World Down Syndrome Day; and just like in October - Down Syndrome Awareness Month - it is about raising awareness and acceptance for those with Down syndrome.

Where do we go after raising awareness? I have been raising awareness on my blog for 7 years now, and on FB for about 4 or 5 years. In raising awareness I feel like I'm preaching to the choir. The majority of the awareness seems to happen within the Down syndrome community.

October was first celebrated as Down Syndrome Awareness Month in 1981. That was 32 years ago. I gave birth to Kayla in 2003; so at that point there had been 22 Octobers recognized as DSAM. Yet I had never, ever, not once, heard of Oct as DSAM ... until I had Kayla.

I think with the explosion of social media people are more aware now ... we share on blogs, twitter, FB, and whatever other means ... and our friends who don't have children with Down syndrome see all this posting about DSAM and WDSD...so they are now more aware. Society is becoming somewhat more aware.

And as Down Syndrome Uprising put it in this post - "People are aware of Down syndrome ... they know it exists." I agree. People are more aware now, even though there is still a lot of misinformation and pre conceived notions about Down syndrome.

But is the acceptance there? Somewhat. No longer are parents told to place their newborns in an institution, and kids with Down syndrome are now allowed to attend public schools; something they weren't allowed to do years ago. We aren't at full acceptance yet (and unfortunately we may never be because people fear what they don't know and they fear differences) and can we say we are even headed in that direction when companies create prenatal screening tests called MaterniT21 explicitly targeting babies with Down syndrome by identifying them in the womb much earlier in pregnancies?

One way we can start with truly accepting individuals with Down syndrome is to stop reporting certain types of news stories. When those type of stories cease to be news-worthy it will feel more like acceptance. Because people with Down syndrome will just exist in society along with everyone else, and it won't be a big deal that someone with an extra chromosome was elected prom king/queen. I said this same thing almost 5 yrs ago, and yet these stories seem even more prevalent now.

I'm trying to become a better advocate for not only my child, but for people with Down syndrome in general. I've attended workshops and hope to attend Partners in Policymaking. Change needs to happen. People with disabilities can't have more than $2000 in assets in their name or they will lose benefits. That's why it's important for things like the ABLE Act to pass legislation. Can you imagine having to micromanage your money so much so as to make sure you don't have more than $2000? How can you ever save up for anything?

As for action ... I started transferring Kayla out of her school last year and informing the school district she will attend her neighborhood school. The same school all the other kids on our street attend; she doesn't need to be bused miles away to a different school. And Kayla is visible in the community; we take her everywhere with us. She is included. She belongs.

But more action needs to come from society in general. Action of recognizing individuals with Down syndrome as just that - individuals who have the same rights and deserve the same respect as every person. They are human beings and don't need to keep being identified by having Down syndrome. They have a rightful place in society just by existing. They don't need to prove their worth or value any more than you or I do.

A Glimpse of Independence

2013-03-19T11:25:00.000-04:00

The kids and I took a road trip this past weekend. We were eating dinner at a restaurant and of course one kid has to go to the bathroom but the other one doesn't.

When I've been in this situation before I always pause momentarily and wonder what other parents do when they are by themselves with more than one kid.

Do I gather everyone up from the table and we all trudge to the bathroom together? Do I trust one kid to go to the bathroom alone?

Depending on the location and situation I've been letting Kayla go to the bathroom by herself. We were at Bob Evans, so it's a small restaurant with the bathroom easily accessible and viewable. If we were at a larger, more crowded restaurant like Olive Garden or Outback I would walk to the bathroom with Kayla and make Lucas come with us.

So Kayla went to the bathroom and I kept my eye on the door. Just when I thought she was taking too long I stood up to go check on her...and then the bathroom door opened and she walked back to our table. My big, independent girl...trust her...I tell myself. Give her some space.

As we were finishing our dinner it was Lucas's turn to need the bathroom. Of course Kayla didn't want to get up and go in the bathroom. Do I trust her at the table by herself? Do I trust her not to get in to any mischief?

I walked with Lucas to the bathroom, but stood outside the door, where I could peek around the corner and keep an eye on our booth in the middle of the room.

I opened up the bathroom door to see if Lucas needed any help at the sink and that's when I heard Kayla's voice. I couldn't hear what she was saying but wondered what she was doing and who she was talking to.

I peeked around the corner and that's when I saw her. She was at the counter holding her cup up and this time I heard her clearly, "I have a refill please?"

She had chocolate milk, a rare treat, and decided to help herself to some more by asking anyone behind the counter for a refill.

I had to smile. She knows we don't usually get them a refill on drinks. I don't know if she decided to go to the counter specifically because I was gone and she wanted to get a refill before I could say no, or if she just finished her milk and wanted more and took it upon herself to get more.

Either way, I loved being on the sidelines and watching her be independent...going after what she wanted...with confidence and independence...even if it was just chocolate milk.

And yes, the waitress did bring her a refill.

Blogiversary Crossroads

2013-03-16T22:29:00.002-04:00

It's been 7 years since I started blogging. A 7-year blogiversary today. When I started I had no idea how long I would blog for; not sure if I thought I would even make it to 7 years.

When I started, Kayla wasn't quite 3 years old ... and now I have these 2 sweet kiddos:

I feel fortunate to have made so many connections throughout the years; and met so many great families in person. I think I've made some friendships that will last through the years.

Over the years I've tried to remain true to what my blog was when I started it. A place to share our life with friends and family ... and raise awareness of what life is like raising a child with Down syndrome. I realize that our experience is different from everyone else's experience raising a child with Down syndrome; but hopefully giving a glimpse of our life showed the normalcy of having a child with Down syndrome. Blessings and challenges just like there are raising a typical child.

I've used my blog to advocate for Down syndrome awareness and I hope after 7 years I've done a somewhat decent job of that. I think that whoever is still reading my blog has heard it all by now, so what is there left to say? Most everyone who reads my blog is on FB, with the exception of my mom (hi mom!) so I keep posting for her. So she can see the pictures and read the stories about her grandchildren...because she won't see it on FB!

So lately I've been feeling like I'm at a crossroads. To keep blogging, or not to keep blogging. What direction to take this blog...or keep it like it is. Mulling things over. Wondering where, if anywhere, to go from here.

We're almost to World Down Syndrome Day (March 21st) and last year on my blogiversary I donated a dollar for every comment on that post to Plus15 where my donation was matched 3:1. Your comments helped me out at just over $50. So my donation turned in to $200. In addition to donating 21% of my Discovery Toys sales to Plus15, I'd also like to do the comment challenge again as well.

So for every comment on this post I will donate $1 to Plus15 for World Down Syndrome Day and have my donation matched 3:1.

Please consider leaving a comment, even if you're normally just a lurker :)

Homework Conversations

2013-03-14T12:05:00.001-04:00

I was going over Kayla's study guide for the Antebellum Period with her.

I explained to her that free African-Americans had to wear tags on their shirts identifying them as free. Kayla said 'like me' me and I gave her a look that said I wondered what the heck she's talking about. A few seconds later I glance over at her as I notice that she is preoccupied with trying to reach something at the back of her neck. She was trying to show me the tag that is inside her shirt.

That connection worked because anytime I asked her "What did the free African-Americans have to wear on the shirts?" she immediately remembered "tags!"

~~~

They are studying Plant and Animal Adaptations now. The following was my conversation with Kayla:

Me, "When a whale swims to the south for warmer water is that hibernation or migration?"
Kayla, "(mumble)gration."
Me, "Hmmm? Which one was it? HI-bernation, or MI-gration?"
Kayla, "YOUR-gration."

She did that to me again that night when I tucked her in and asked her the same question. She pointed at me and said "YOUR-gration" in a voice that said I already told you that, Mom!

Disovery Toys and Matching 3:1

2013-03-12T19:37:00.003-04:00

If you read my blog I know it comes as no surprise that March 21 is known as World Down Syndrome Day (WDSD). I blogged about it here.

WDSD is celebrated internationally on March 21 because the date, also written as, 3/21 symbolizes 3 copies of the 21st chromosome.

I am an independent consultant with Discovery Toys. I became a consultant when Kayla was 8 months old. I didn't sign up as a consultant for an extra/2nd income for our household (I don't kid myself on my abilities to be a salesperson!); I just really, really liked their products and wanted to get them at the consultant discount. I liked that they are durable, grow with the child, have more than one use, lifetime guarantee, and replacement parts.

I haven't been active since we moved from NM to MD and from MD to SC. As I said, I was never a consultant to make money!

I am going to donate 21% of all sales made from now through Mar 20th to Down Syndrome Research & Treatment Foundation.(DSRTF)

If you've got birthdays coming up, or like to shop ahead of time for the holidays, or if you are a teacher or therapist and are looking for some new tools/products to use ... take a look through the catalog and see if anything catches your eye!

Why donate to DSRTF? Because just like last year, all donations made on March 21 will be matched 3:1. So my 21% of total sales will be tripled.

Last year almost half a million dollars were raised for cognition research with the 3:1 matching donations.

There will also be a DS Cognition Research 101 webinar on March 21 at 10AM PT/1PM ET. Register here and learn about Down Syndrome Cognition Research - the science, the goals, and the results so far. Years and years ago no one thought it was even important, or worth it, to explore Down syndrome cognition. Now? There are clinical trials under way and researchers are making advancements toward treatments that could improve learning, memory, and speech for people with Down syndrome.

Research is already shedding light on improving neurological deficits.

Improvement in each of those areas would be so beneficial to Kayla ... more clarity in speech is always a good thing! Being able to communicate effectively and clearly is so important. If we could work on improving her cognition and memory she would be that much more likely to lead an independent life.

Modern Families

2013-03-08T22:38:00.000-05:00

Katie Couric had a segment on modern families and what they look like today. One of the families profiled were Bill and Shelley - the couple I blogged about that were the subject of the article No Disability Could Keep Them Apart from the Washington Post.

Bill gave a passionate statement at the end of the video. I loved what he had to say; and I love that it came directly from a person with a disability.

"Yes, of course we have challenges. But the real challenge, the real disability, is the ignorance, the uneducated. So if you see people w/disabilities like us, or other disabilities, keep your eyes open, keep your ears open, then you'll give them the respect they so (richly?) need."

Use Another Word

2013-03-06T11:44:00.000-05:00

Today is the annual Spread the Word to End the Word campaign ... where advocates everywhere are asking people to take the pledge to eliminate the derogatory use of the words retarded/retard from every day speech and promote the inclusion and acceptance of people with intellectual disabilities.

The word is used so carelessly and in just about every example of when it's used; it isn't even the right word for that situation. It doesn't make any sense to use the word as a catch-all for every possible negative scenario.

It makes the person sound uneducated; because really? Something was retarded? You don't think there were a number of other words that fit better in your sentence? Isn't your vocabulary a little more expansive than throwing the word retarded/retard around in your conversations?

I'm re-sharing the post I did last year: An Open Letter. There isn't anything more I could say about the subject.

It's time to find another word to use.