3 on the 21st: A Blog Hop

Friday, 22 November 2013

This post is part of the monthly 3 on the 21st Down syndrome blog hop.

The blog hop is simple: Post 1 tip, 1 truth, and 1 picture about Down syndrome/disability.

1 Tip: Whenever the opportunity arises, like when you're with another family who has a child with Down syndrome, or reading a book about Ds, or participating in a Buddy Walk, simply point out to your child that they have Down syndrome. "You know your friend over there has Down syndrome? Just like you do." "See the boy in this book? He has Down syndrome, like you." "We're walking in the Buddy Walk because of you - because you have Down syndrome." That way your child will hear it in a straight-forward way, become used to the term Down syndrome and come to realize it's just a natural part of who they are.
Then one day you might have this conversation with your child, like I had with Kayla.

Me, "Kayla do you know what Down syndrome is?"
K, "My eyes."
Me, "What about your eyes?"
Kayla, "So beautiful."

1 Truth: Kids with Down syndrome can and do participate in extra-curricular school activities. Kayla was just notified that she she was accepted in to the drama club at school. I'm so excited for her because she had such a fun time this summer participating in Missoula Children's Theater production of Snow White.

1 Picture: She looks so grown up to me in this photo!

 

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The Day After

Friday, 1 November 2013

Another October has come and gone. Another 31 for 21 finished.

Thanks to everyone for participating in the annual blogging challenge for Down Syndrome Awareness Month.

I know some people express that it gets harder every year to blog every single day in the month of October; especially about Down syndrome specifically. I know it feels like you've come to a point where you've said (blogged) all there is to say about Down syndrome.

But please don't be discouraged. From the beginning (Tricia) said that every single day didn't have to be a post that was Down-syndrome related; and that still stands today. The point of the challenge is just that - a challenge to yourself to blog every day. If you miss a few days - it's ok! - the blog police are not going to come get you!

And even if you feel like you've said all there is to say - just remember, you never know who all is reading  your blog. Every day there is a possibility of a new family getting a Down syndrome diagnosis and they might stumble across your blog. You never know who you are reaching. You never know who might come away from your blog that day with a better understanding of life with a child with Down syndrome.

Maybe it's time to change the name to National Down Syndrome Awareness and Acceptance Month. I know there is some consensus in the Down syndrome community that awareness has been raised and we don't need to raise anymore awareness; that people are aware and what we need to be advocating for is acceptance.

I agree about acceptance, but I'm not so sure the intentions behind awareness have been fully met. Yes people are aware of Down syndrome. They know of Down syndrome, but there are still stereotypes. There are still misconceptions. There are still negative and false assumptions about people with Down syndrome.

For the new parent receiving the diagnosis of Down syndrome are they really aware of what that means today? Or do they still have an outdated image in their mind of what Down syndrome was years ago?

Has the right kind of awareness been raised outside of the community? The kind of awareness that paints a more accurate picture of the capabilities of people with Down syndrome? Or are people still not aware about Down syndrome until they have a reason to be - until they have a loved one with Down syndrome in their lives.

I don't claim to have all the answers, but I don't think we can totally stop the campaign to raise awareness either. I think we need to expand that campaign from awareness to include acceptance though. Hmm... should I start a change.org petition to get "Acceptance" added on to that monthly designation?

Since today is also the day after Halloween here are a few Halloween pictures of The Supergirl, The Pirate, The (not-so-bandwagon) Red Sox fan, and The Civilian!

 

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Impressed With Her Flexibility

Thursday, 24 October 2013

Kids with Down syndrome can be extra-flexible. I think this is a result of having low muscle tone/loose ligaments.

When Kayla was a baby/toddler people would often comment on her flexibility. I'm talking about being able to raise your legs straight up in the air almost touching your ears.

Lucas is impressed with Kayla's skills and has commented on this several times over the past few months. If he's trying to get by her in the van she swings her legs around and up for him to go across instead of bending her knees and bringing them to her chest.

A few months ago he was trying to find the words to explain this to me and he came up with: "Disability people can do something that not disability people can do! Watch Kayla, see how far her legs go up? Wow! Mine can't do that!"

(Before anyone says anything, yes, I realize that was not People First Language; however, he's 5 years old. He was trying to figure out the words to use to explain what he was thinking. The PFL will come with time. I modeled it for him by saying, "I don't think it's necessarily that people with disabilities can do that, I think it's more likely that people with Down syn can do that because they can be more flexible.)

I thought it was cool that he thought it was cool that she could do something that he couldn't, because she has Down syndrome.

My kids humored me and re-enacted Lucas trying to get by Kayla and Kayla raising her legs, so you can see that flexibility in action.

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

This doesn't have anything to do with being flexible, or having Down syndrome, but Lucas noticed something else Kayla can do that he can't (yet!). She can pick him up and carry him, but because she's still taller than him, he's not able to lift her up. He thinks that's cool too. "I can run faster than Kayla and Kayla is stronger than me!"

And since Kayla had those Shoulder Buddies I mentioned in the previous post about sensory issues, I did a quick video of what she likes about them. 

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

 

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Partners In Policymaking

Saturday, 19 October 2013

This weekend I started my first session of Partners In Policymaking and I am so excited for the information, tools, resources, and classmates that I will get to know over the next several months to help me better a better advocate for change.

This first session was an overview on the history of disability, the Disability Rights Movement, and Centers for Independent Living, and People First Language.

I admit to knowing very little about the Disability Rights Movement (I don't remember learning about it in school) so this was very eye-opening for me. I had no idea how much advocating and rallying people with disabilities have had to do over the years to get laws for equal access and opportunities for things that should simply be a basic right and not have had to fight for.

I learned about ADAPT and what they accomplished and what they are still accomplishing. I learned about Ed Roberts and what he did for the disability rights movement and his founding of the World Institute on Disability.

We watched a powerful film called Lives Worth Living (view the trailer at that link.)

I am really looking forward to next month's session topics of special education and inclusion. Maybe one day I will find myself on a state department of education advisory committee for special education.

I'd love it if this state had something like the New Jersey Coalition for Inclusive Education and the Maryland Coalition for Inclusive Education.

Hopefully, one day in the near future, that will happen.

 

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Left or Right Handed?

Thursday, 3 October 2013

I don't think there is any connection with Down syndrome and left- or right-handedness, but I am curious to see results of left- and right-handedness in people with Down syndrome.

Kayla is left-handed.

Joe and I are both left-handed. Although Joe is more of a left-hander than I am. He bowls, golfs, bats, and throws with his left hand. I do the major things with my left hand: eat, write, and hold the phone with my left hand to my left ear! But for the rest of that stuff I use my right hand.

Lucas is a right-hander. Now how did he get to be the only right-hander in a family of left-handers?

So how does your family dynamics breakdown with left- and right-hand use?

What hand does your child with Down syndrome use?


What about siblings? You can chose more than one answer if some siblings are right-handed and some are left-handed.


What about the child's parents? (if anyone is ambidextrous which one do you identify with more?)



 

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Down Syndrome Registry and Biobank

Wednesday, 2 October 2013

Two years ago I blogged about the NIH requesting feedback on a proposed Down syndrome registry and biobank.

Last year I shared that the NIH was indeed establishing a National Down Syndrome Patient Registry.

This NIH patient registry, called DS-Connect, is now live. Families can now sign up with the registry. You can share as much, or as little, information as you want.

This registry "...will facilitate contacts and information sharing among families, patients, researchers and parent groups."

How this registry can be used:

For professionals - Researchers, clinicians and other professionals can access de-identified aggregate data to identify target populations for study or trial planning or recruitment.

For families - explore the information you and others have provided to learn more about Down syndrome and its impact on other community members.

DS Achieves put out this statement of support about the new registry, "a resource for connecting researchers with families and self-advocates willing to participate in research and clinical trials. Called “DS-Connect,” the NIH Down syndrome registry will also help researchers improve our overall understanding of DS as a condition with the health histories, symptoms, and diagnosis information that families voluntarily provide.

For decades, DS researchers have lacked commonplace tools and capabilities necessary to advance their work to the next level, including a national DS registry. Without them, we can’t move from basic research to clinical trials to drug therapies or best practices that can meaningfully improve the quality of life for people with DS."

DS Achieves created the ONE21 campaign with the vision "to fund the development of a dedicated and centralized DS biobank that will be open to all DS researchers, regardless of institutional affiliation. A biobnak will go a long way toward advancing the science of DS faster, making therapies and best practices available sooner, so our lovved ones with Ds can live healthier, happier, and more vibrant lives."

You can join the ONE21 community to stay up-to-date on the creation of a biobank.

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Story Behind The Picture

Tuesday, 1 October 2013

When we went to Disney last month one of the restaurants we ate at was the Biergarten Restaurant at Epcott.

They have "communal, biergarten-style tables" and you're asked if you mind being seated with another party. We didn't mind and we were joined by another family of four who had two boys about the same age as my kids. And, coincidentally, the husband has a brother who has Down syndrome. Neat little connection that we were seated with that family!

This restaurant also has a live band and a dance floor. We were seated right next to the railing that circled the dance floor. The first opportunity there was to dance I told Kayla she could go out on the floor to dance; she was more than happy to be able to do so.

I tried to get a picture of her and managed to get this photo as the lady in the background went down. She went down hard; hit her head hard.

Kayla came back to the table and she was very concerned about the lady; kept glancing over to see if she was up yet, kept saying she didn't want her to go to the hospital ("no hospital, no blood!"), she was worried for her.


She was down for quite a while with different people checking her out (security and medical). She was down for so long that when she finally got up people clapped for her as they do when an athlete is injured. I was surprised she wasn't being escorted out on a stretcher or wheelchair since she was down for so long.

We continued on with our meal and eventually the band started up another round of songs. Kayla took off for the dance floor but was back sooner than I expected. She told me she 'gave a girl a hug.' I usually play 20 questions with Kayla to try and get the whole picture of what she's trying to tell me.

"You gave someone a hug?"
K: "Yeah, the girl."

I turned to look at the dance floor to see what kids were there, but there weren't any. I tried asking her again about who she hugged and she finally gave me a better description.

"That girl fall, I give her a hug."
M: "You hugged the lady that fell down?"
K: "Yeah!"
M: "The lady that fell down on the floor over there? You just went over there and gave her a hug?"
K: "Yeah, I hug that lady."
M: "Where is she?"

She pointed across the floor to the other side of the railing where there were tables and I scanned the diners sitting over there ... and sure enough ... the lady was sitting at the table. I knew Kayla had been concerned for her but I didn't know she paid that much attention that she would be able to pick her out of a crowd.

I told Kayla how nice that was of her to give that lady a hug. A few minutes later Kayla and I walked to the buffet to get dessert and on our way back she wanted to bring me over to their table and show me the lady that she hugged so I could see that she was ok. I still wasn't 100% sure if Kayla did what she said she did.

An example of why I don't always believe her: yesterday I asked if she went to the library at school (yes). So you returned your 2 books? (yes). Both of your books - Bobby's Zoo and Snow Day - you returned to the library? (yes) And you got new books? (yes). When I opened her backpack Bobby's Zoo and Snow Day were still there.

So I asked this lady if Kayla did in fact come by her table and give her a hug and she confirmed that she did and she was really touched by it.

Lesson from my daughter: Sometimes it's ok to hug a stranger, because sometimes they really need a hug. 

My kids closed out the night with some more dancing:

 Grab This Button

 

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7th Annual 31 for 21 Blog Challenge

Monday, 23 September 2013

Yesterday was the first day of Autumn.

The change in season brings cooler weather. Sweaters. Pumpkin patches. Corn mazes. Colored, falling and raking leaves. Fall-flavored spiced teas. Halloween.

Fall also means Buddy Walk time. And National Down Syndrome Awareness Month.

And, of course, that annual crazy-fun time of the 31 for 21 Blog Challenge.

For the back story on the annual challenge, and how I came to host it, read here.

By now I think most people know all about the challenge, what "31 for 21" stands for, what the challenge is, what to do etc. But for the new bloggers out there here is a quick summary:

- Trisomy 21 is 3 copies of the 21st chromosome (ie Down syndrome).
- Oct is National Down Syndrome Awareness Month
- There are 31 day is Oct
- Blog every day in Oct (31) to raise awareness of Down syndrome (T21)
- So ... 31 for 21 Blog Challenge

A couple of guidelines:
- You don't have to blog about Down syndrome every day; just blog every day about whatever you want
- You should mention, at least once, that you are participating in "31 for 21"
- You don't have to be a parent, or grandparent, of someone with Down syndrome to participate
- Grab the button and post somewhere on your blog or in a blog post
- Sign Mr Linky so other bloggers can see all the participants
- Meet new bloggers (there were about 170 last year!)
- If you tweet, use #31for21

Grab This Button

<a href="http://mdbeau.blogspot.com/2013/09/7th-annual-31-for-21-blog-challenge.html"><img src="http://i185.photobucket.com/albums/x198/wish4rk/TTR31for21-5.png" /></a><a href="http://mdbeau.blogspot.com/2013/09/7th-annual-31-for-21-blog-challenge.html">Grab This Button</a>

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3 on the 21st: Blog Hop

Saturday, 21 September 2013

An easy-peasy monthly blog hop that Meriah came up with:

One truth (about Ds/our lives with Ds)
- Truth: Not all people with Down syndrome are the same. They wont have all the same medical issues, characteristics, behaviors, personality, or emotions.

One tip (something related to Ds/raising a child w/Ds/or parenting in general)
- Tip: Make sure your child's pediatrician has the new updated medical guidelines for Ds to follow. 

One picture:
- Having fun at Disney

 

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Running The Air Force Marathon

Wednesday, 18 September 2013

Research Down Syndrome funds and supports scientific research at leading institutions that are studying the basis of intellectual impairments in Down syndrome. One of the ways they are doing this is with the RDS Runners program. They are charity sponsors with various marathons around the country.

Last year my husband, Joe, completed his first marathon -the Air Force Marathon - as a runner for RDS. He also completed the Disney Half Marathon in Jan. Joe will once again be running in the Air Force Marathon on Sep 21st and raising money for Research Down Syndrome.

Down syndrome is one of the most common genetic conditions, but one of the least funded in the NIH. Research in Down syndrome isn't just DS-specific but extends to research connected with Alzheimer's and leukemia.

There are several current research studies happening now that are focusing on the why and how having the extra chromosome causes delays for people with Down syndrome; including how to 'turn off' the extra expression that happens in specific genes.

Research like this could possibly lead to medical therapies for intellectual disabilities to help improve memory and cognition which will allow people with Down syndrome to be more independent.


If you are able to donate to Joe's Crowdrise page for the marathon it is much appreciated!

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The Henry Owl & Buddy Walks

Wednesday, 11 September 2013

Last summer Kaitlin started her business - A Stitch In Lives as a way to raise money for charities and ministries she supports. All of the products are handmade and 50% of the profit from the sales are donated.

In April her baby brother was born and received a diagnosis of Down syndrome.

Before he was born she designed and made an owl for him based off his pre-birth nickname: Henry. Her family encouraged her to make more owls and put on her web store and there began the line of The Henry Owl.

After her brother's birth Kaitlin wanted to use her business for Down syndrome awareness as well. The proceeds from The Henry Owl go to a Down syndrome organization.

Kaitlin's family will be walking in their local Buddy Walk where they will also have a vendor booth to sell these owls. From now until Nov 30th the Henry Owls are 50% off - you can get one for $10. Their goal is to sell 100 owls and donate $700 to their Buddy Walk.

~~~~~~~
Speaking of Buddy Walks ... our own local walk is next month on Oct 6th on Daniel Island. This will be our 11th year walking for Kayla and Down syndrome awareness, acceptance and inclusion.

If you'd like to sponsor Kayla on the Buddy Walk you can click here to go to our team page (or click on the widget on the left side of my blog). If you're in the local area you can join Kayla's team via the same link.

Thanks for your support!

 

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The Chromosome Talk

Monday, 9 September 2013

Lucas brought me this math worksheet to show me how many problems he completed and that he was leaving some of the rows for Kayla to do. On the top section he did the top 3 rows and the bottom two rows (at the time) were blank. (Kayla later did those 2 rows). The second half of the page was also blank; he later did the first row and Kayla did the 2nd row. On a side note, I have to say he did this completely independently without me suggesting he do any type of school work. I only hope he continues to enjoy learning as much as he seems to right now!

He asked if I thought Kayla would want to do 3 rows or 4 rows. I said 3 rows would probably be good for her. From there we started talking about Kayla having Down syndrome.

Lucas (and Kayla) both know that Kayla has Down syndrome. It's something I've said and talked about with Lucas, but on a very basic level. It's just been "Kayla has Down syndrome and that makes it harder for her to do some things or it takes her longer to do things" type of conversation.

This time I asked Lucas if he knew what having Down syndrome meant. He said, "That she can't see very well?" I'm sure that response had to do with all the talk about her convergence insufficiency and going to vision therapy.

I told him that probably didn't have anything to do with Down syndrome. Having Down syndrome had to do with chromosomes.

I explained that everyone has chromosomes in their bodies. When babies are being created they usually get 1 from their mom and 1 from their dad. I brought a finger from each of my hands together showing how they come together to form a pair of chromosomes. I said that was "chromosome #1 from the mom and dad" and did that a few more times with #2 and so on telling him that eventually there will be 23 pairs of chromosomes.

"But sometimes some people, like Kayla, will get two chromosomes from their mom or dad (I held up 2 fingers from one hand) and still get 1 chromosome from their mom or dad (and brought the finger of my other hand together to meet the 2 other fingers) and now they have 3 chromosomes."

Lucas, "Oh! So ALL people with Down syndrome have THREE chromosomes!"

(Well, that was easy!)

"Yep! And see what happens when I have 3 chromosomes? It's an extra chromosome. So Kayla has an extra chromosome and sometimes having something extra is like having too much of something. So she has this extra all in her body and extra material in her brain. Having this extra material in her brain means there is so much info in there that it takes her longer to process things that seem easy for you. Like these math problems. You can do this one problem and that's all your brain sees, but when Kayla's brain sees this one problem it's like seeing ALL the problems on the page at once and her brain has to process all that information."

Then he surprised me by saying he had a couple of ideas on what to do with that math sheet to make it easier for her. He put his hands on the paper and tried to cover the other problems so only 1 was showing. Then he said that probably wouldn't work because he wasn't able to cover all the problems; but his other idea might work. He said we could just cut out one problem so Kayla would only see 1 problem to work on. Wow, he's finding ways to make accommodations already, and I'm impressed at how insightful he is.

I asked him if he wanted to see a picture of Kayla's chromosomes. Of course that interested him and he asked how we got a picture of her chromosomes. So I started to explain that the doctor drew blood and then they look at it with a microscope to see the chromosomes.

Then he asked, "So then can they just take the extra chromosome out of her body?"

I tried to explain that taking her blood wasn't taking the extra chromosome out and he asked, "How do they keep it inside of her body then? How does it not come out?"

I realized I needed to explain that we have a billion cells in our body and those cells have the chromosomes so they are all throughout our body. When they take blood they can see just a small sampling of what is in our bodies so they could see the chromosomes that were in that sample of blood, but her body was still full of all the chromosomes throughout the rest of her body.

He seemed to be satisfied with that answer and I think now he has a slightly better understanding about Kayla and Down syndrome. 


 

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(3) 21 Down Syndrome Blog Hop

Thursday, 25 July 2013

Quick and easy monthly community blog hop! 3 things on the 21st of the month (ok I'm a few days behind, but links are open until the 28th!).

One Truth (About Ds/our lives with Ds)
- Kayla having Down syndrome hasn't prevented our family from doing anything we've wanted to do.

One Tip (something related to Ds, raising a child w/Ds, or parenting in general)
- Don't underestimate your child. Let them show you what they can do and give them the space to do it.

One Photo

 

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What Makes Her Special

Monday, 22 July 2013

For Kayla's 10th birthday she had a tea party at a Victorian tea room - Time Well Spent. The girls picked out their dresses from a selection of prom, bridesmaid, and wedding dresses. They wore the pinned up dresses across the hall to where the tables were set up for the tea party. They had lemonade in tea cups and some finger foods before having a cupcake. They all had such a great time and I'm glad we decided on doing this for Kayla's birthday.

After the tea party Kayla had 4 friends spend the night for her first slumber party. Now that she's had the requisite slumber party do we have to do that ever again?! Haha, actually it wasn't that bad ... it was just getting the girls settled down to actually sleep! I knew that would be the hard part; they finally fell asleep at midnight.

I had a neat conversation with one of the girls. While everyone else was upstairs she was downstairs with me as I was painting her toenails. She let me know that one of her toes didn't fully form because the umbilical cord wrapped around it. She told me it was her lucky toe.

Then she said, "I love my lucky toe. It's what makes me special."

I heard what she just said and ran with it.

"Kayla has an extra chromosome." I told her. "She does?" she responded in wonder.

"Yep. Most people have 46 chromosomes in their body."
"So Kayla has 47?"

"Yes. We usually get 23 from our mom and 23 from our dad, but sometimes we get an extra one. Chromosomes are numbered and Kayla's extra one is on number 21. It makes some things harder for Kayla to do."

"Wow, that's some neat scientific stuff. So that's what makes Kayla special?"
"Yes."
"Cool."

When she started to say "So that's what makes Kayla" I was expecting to hear, "different", "weird" or "that's why she can't do this or that" or "that's why she acts that way" or something like that.

But nope, it's what makes her special.

I don't usually like the word special, but this time it was appropriate in an innocent child's discovery about what makes each of them special.

She is special because of her toe, and Kayla is special because of her extra chromosome.











 

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Tired of Labels

Thursday, 27 June 2013

Your child is born with an extra chromosome and receives a diagnosis of Down syndrome, or Trisomy 21.

You enter the school system, and usually around the ripe old age of 5 years, the school wants to do testing and evaluation on your child. This testing includes an I.Q. test. At 5 years old. Yet kids with no disabilities, or special needs, or risk of a developmental delay enter Kindergarten without having their I.Q. tested and being labeled.

Your child is given an I.Q. score and labeled with mental r*tardation (MR) and further labeled within the mild, moderate, or severe range.

Times change and the label of MR changes to mental or intellectual disability, but there are still ranges to attach to that label, to give more of a label.

Then you might live in a state where the school districts place your child in one of three - what they term - programs. (i.e. self-contained classrooms.)

But it can't be labeled just a plain old self-contained, or special education classroom. No, the classroom has to be broken down with labels, too.

The 3 types of programs are based on where your child's I.Q. score falls. The classrooms are called Educable Mentally Delayed (EMD), Trainable Mentally Delayed (TMD), and Profound Mentally Delayed (PMD). If the classrooms are labeled as such what does it say for the students inside those classrooms? Can you imagine your child being labeled as "trainable"? Aren't animals considered trainable? And why "educable"? Why aren't the general education classrooms labeled as "educable"? Aren't all students "educable"? Isn't that why we send our children to schools - to get an education?

At some level, maybe state, they have changed the labels of these classrooms to be "Mild, Moderate, and Severe". Yet everyone still refers to them as "EMD, TMD, PMD" rooms.

If your child doesn't have enough labels yet, society wants to label them on their level of functioning.

They will ask if your child is "high-functioning." I think "High-Functioning Autism" is a diagnosis now. If not official it is at least an acceptable label as I've seen "HFA" in articles.

I've heard mention of high-functioning and low-functioning, but I've never heard of anyone say someone is middle-functioning. Why not? Can't you be in the middle of high- and low-functioning? Why do you have to be either one or the other?

How come people without disabilities or special needs aren't labeled as high- or low-functioning? Isn't there a range of skills amongst that population as well?

Who determines what is high- and low-functioning anyway? What if you're in a wheelchair but have average intelligence? What level of functioning are you then if you have low mobility?

What if you have below-average intelligence but are physically capable of so much, or are gifted in some area of the arts? What level of functioning are you?

What if you have above-average intelligence but have no common sense or people skills? What level of functioning are you?
 
In this blog post I mentioned how the reporter said, "Garrett (a young man) 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."

"Very highly functioning for someone with Down syndrome." Really? What makes him so high-functioning if he has the cognitive ability of an 8 or 9 year old? What made the reporter say that? And what relevance did it have to the story? What if there are plenty of young adults with Down syndrome who have a cognitive ability older than an 8 or 9 year old? What if his same-age peers with Down syndrome have accomplished more than he has in terms of schooling or independence ... does it make them very, very highly-functioning? Did this reporter have such a low expectations or preconceived notions about people with Down syndrome that he came away with his interactions with Garrett so impressed that he felt the need to label him 'very highly-functioning'?

I've been asked in the past, or had comments made to me, about Kayla being 'high-functioning.' I don't know if she is or not. Based on what? Her I.Q. score? Compared to what? Compared to her typical same-age peers? She does a lot of things they do, but there are a lot of things she doesn't do. Compared to same-age peers who have Down syndrome? Again, she can do things that other kids with Down syndrome her age can't do, and they are able to do things she can't do. There is a wide variety of skills and abilities amongst the Down syndrome population just as there is in the typical population.

Kayla isn't high- or low-functioning. She functions period. She does what she is capable and able to do; sometimes with supports, accommodations and modifications, and sometimes without any supports.

Why do people with disabilities have to continuously be labeled and have label upon label stacked upon their shoulders? Can't they just be? Can't they just exist as is without having to fit in to boxes and labels?

 

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Auditioning For Snow White

Monday, 17 June 2013

When I've taken Kayla to see plays or ballets she is mesmerized by what is happening on the stage. At the end of the performances she'll say it's her turn to be on stage. She enjoyed being on stage for the ballet recital and the Global Down Syndrome Foundation's Fashion Show.

So when I saw the Missoula's Children's Theater was on base last week to perform an original adaptation of Snow White I knew I had to take her to the auditions.

She was excited when I asked her if she wanted to try out to be in the play Snow White; of course I knew that she would want to BE Snow White. I made sure to explain to her that you had to be older to be Snow White but maybe she could play another character ... one of the dwarfs, or an animal.

Auditions were Monday and we had no idea what to expect. She's never been involved in a play before, much less auditioned for one. The only thing I was told was the kids would sit in a circle and the tour directors would ask their names and ages and see how loud they responded and get a feel for their personalities.

Well they did that and then some. The only thing I practiced with Kayla was saying her name loudly, and clearly.

It didn't go so well. I couldn't even hear her say her name when it was her turn. It was like she was just speaking to the tour director directly instead of making sure she was heard.

Then they had different lines that they had to say in a small group and then individually. Kayla's group had the line, "My calculations are always correct!" It's not a long sentence, but for a child with speech issues I admit I groaned when I heard that line. A word with 4 syllables is hard for Kayla; I usually have to break them up and we say it syllable by syllable until she can (mostly) get each syllable in the word. I knew 'calculations' was going to be tough for her to say.

When it was Kayla's turn it was obvious that she wasn't going to be able to say the full sentence. One of the tour directors, Kelly, was great and didn't miss a beat. She said to Kayla, "How about this? Just say 'my calculations." After Kayla repeated that, Kelly said, "are always correct." I was thankful she was able to split the sentence up for Kayla so she could still participate and say the line.

They ended up having a part for every child who auditioned. They said that doesn't always happen (I think they didn't have as many kids audition as they were expecting), but either way, Kayla was given the role of a frog - one of the Forest Animals.

I kept debating whether to thank the tour directors for giving Kayla a role, for a taking a chance with her and letting her participate in the play. But then that felt like I was saying they were doing her a favor, when really, why shouldn't she have a chance to be in the play? Kayla wasn't the only kid who didn't speak up loudly, who wasn't demonstrative, who mumbled or didn't speak clearly, who hadn't been in a play before, who didn't put much oomph into speaking their lines ... so if they were also chosen why shouldn't Kayla have been too?

I wasn't expecting her to be any of the main characters, and that's fine. I just wanted her to get her feet wet and see how she did and if she would have fun.

Most of the time the Forest Animals were on the stage they sat in a line and as the narrator was talking they did some had motions. Kayla did have a couple of speaking lines though. One of her lines (which was spoken with 2 other kids) was, "And we have a new queen!?"

In the first rehearsal this line sounded like this to Kayla, "Andwehaveanewqueen?!"

She tried to say it in unison with the other 2 kids, but she could only get out "new queen."

The next day I did ask Kelly if they could slow that line down just a beat. I practiced it with Kayla and if it was said more like, "And .. we .. have .. a .. new .. queen!?" she was more able to say the full line just about in unison.

Kelly had no problems with my request and immediately called the 3 of the kids over to practice it at the slower pace. This worked so much better for Kayla.

I am thankful that they didn't look at Kayla and see Down syndrome and automatically think it wasn't going to work out. Down syndrome never came up at all. If the tour directors had any reservations about Kayla they never expressed it to me ... they just accepted in her the play and treated her like everyone else.

 

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Speaking Up

Monday, 10 June 2013

A couple of weeks ago I was in a situation where someone used the "r-word" in a conversation with me.

I was in a store, checking out, and found myself at the register with a guy who had the word "manager" on his name tag.

I scanned my shopper reward card and as my information came up on his screen he attempted to address me by my name. As he got to my last name he paused and stumbled a bit in trying to pronounce it. I said my last name for him.

That's when he said, "I have trouble pronouncing names, I just end up sounding retarded."

Say what?!

My mind is thinking: You're the manager of the store. You should present yourself as more professional, especially when you're checking out a customer you don't know. You really had to say that? You couldn't stop at just saying 'I have trouble pronouncing names.'

And what does that even mean? You have trouble pronouncing names so you sound retarded.

So you sound like someone who has an intellectual disability and has trouble speaking?

So you sound like someone who has an intellectual disability and low muscle tone which makes enunciating certain sounds difficult for them?

So you sound like someone like....hmmm...my daughter? Someone who does her best to speak her words and tries to get her brain to connect the dots between making her mouth, tongue, and lips all work in sync to come together for perfect speech ... yet it doesn't happen. There are still times we, her family, have trouble understanding her. Hence the whole "Ms Frog had a baby snake" conversation.

Of course this guy knew none of this. Kayla wasn't with me. He didn't know I have a daughter with an intellectual disability.

But the point is, there was no reason for him to make that comparison in the first place. There was no reason for him to compare his trouble pronouncing names with sounding 'retarded.'

Was he expecting me to laugh at his little joke and find that funny?

I didn't immediately say anything (you know, my issue with uncomfortableness in confronting someone about their usage of the r-word). But while he was finishing with my transaction I kept telling myself to "say something! Find your backbone! Speak up! Advocate! An opportunity presented itself for you to find your voice...use it!"

So I did. I wouldn't say I was eloquent. I didn't know what to say and I know I spoke quickly and stumbled over myself. I just said something like, "Next time could you not use the word retarded? I have a daughter who has an intellectual disability and I'd just ask that you think before using that word again."

Of course he was apologetic and appeared embarrassed. I think we both felt a bit awkward. But I did it. I finally spoke up. I finally let someone know how I felt after hearing them use the r-word. I finally found my voice and my backbone.

And maybe, just maybe, (and hopefully), he will think about it the next time he goes to casually throw out that word in a conversation.

 

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Call to Action Ref: Death of Ethan Saylor

Wednesday, 5 June 2013

The National Down Syndrome Society and National Down Syndrome Congress have put out a joint Call to Action regarding a push for an Independent Investigation into the death of (Robert) Ethan Saylor.

Mr Saylor's family still does not have justice for Ethan. There are unanswered questions surrounding his death five months ago. Question such as why he had a crushed larynx.Why did the situation escalate so quickly when Ethan's support person had re-entered the theater and was trying to intervene. Why couldn't the officer's have waited several minutes for Ethan's mom who was on her way?

From the joint release:
There has been much speculation about the details surrounding Ethan's tragic death since it occurred. The only way to get a complete understanding of what occurred so that appropriate measures can be taken with regard to those involved, is through an independent investigation. The Frederick County Sheriff and State's Attorney have already expressed their views that having Down syndrome was the sole contributor to Mr. Saylor's death, rather than the security guards' responses to Mr. Saylor, an individual with Down syndrome.  

Please email, fax, and/or call Governor Martin O'Malley of Maryland to demand an independent investigation into the death of Ethan Saylor. 

Call Script Talking Points

Governor Martin O'Malley

Toll-Free 800-811-8336

Office:  410-974-3901   

Email: governor@gov.state.md.us

·         Hello, I am (state name and where you live). I am a (parent, sibling, grandparent, aunt/uncle, teacher, friend) of a person with Down syndrome. I am (writing or calling) about Ethan Saylor, a man with Down syndrome who died while at The Regal Westview Movie Theaters in Frederick, Maryland in January.

·         I am requesting an independent investigation into Ethan's death, so the facts can come out and those responsible can be appropriately prosecuted.

·         While waiting for his support staff to retrieve their car after the movie, Ethan decided he wanted to remain for another showing. He verbalized to the Officers his intent to remain and refused to leave his seat. The Officers attempted to physically remove him from the theater. He was restrained face-down by three plain-clothes officers moonlighting as mall security. Ethan died from asphyxiation from a crushed larynx while handcuffed. His senseless and avoidable death was ruled a homicide by the Maryland Medical Examiner. The Frederick County Sheriff's Office (FCSO) and The Office of the Frederick County State's Attorney neglected to conduct a thorough investigation of the facts involving the case. A Grand Jury was convened but failed to hand down an indictment against the officers involved.

·      Despite the Sheriff's own public comment that the internal investigation has been completed and the officers have returned to full duty, the FCSO refuses to release investigation results to the family's attorney, despite numerous written requests.  Ethan's death was senseless and entirely avoidable.  

Sincerely,

[Insert contact information] 

 

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It's Not An Adjective

Wednesday, 22 May 2013

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.


 

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Thick Skin

Friday, 17 May 2013

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.

 

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