Budget Deal at Expense of Military Retirees

Monday, 16 December 2013

Congress has been trying to work on a budget deal that will pass so the government doesn't shut down again.  Rep Paul Ryan and Sen Patty Murray struck a bipartisan budget deal last week.

But this budget deal negatively impacts current and future military retirees. This part of the budget deal affects the COLA (cost of living allowance annual raises to keep up with inflation) for military retirees under the age of 62. As of right now, retirees receive a portion of their retirement pay in COLA; this deal will have those 62 and under receiving 1% less in COLA each year of retirement until age 62.

While 1% doesn't seem like much it ends up being almost 20% of retirement pay over 20 years. An enlisted military member who is, on average, age 40 and retires with 20+ years of service will stand to lose $83K over 20 years. A typical officer retiring at age 42 would lose $124K. How quickly that 1% adds up.

Military members depend on, and factor in, the full COLA as part of their retirement pay when they are planning for their future. Losing 20% of their retirement pay will negatively impact thousands of military families.

What makes this frustrating is Congress previously set up the Military Compensation and Retirement Modernization Commission last year. Promises were made that any changes to retirement would be 'grandfathered' in; current retirees and actively serving members were to be protected.

This budget deal allows no provisions for grandfathering in current retired and active military members.

As the spouse of a military member who just hit his 21-year anniversary and can retire at any time, I'm very concerned about how this deal is going to affect our future retirement savings. Joe has served honorably for 21 years and he, like all other military retirees, deserves his full pension.

Balancing the budget should not affect military retiree pay when there are other places that the budget could be trimmed. What about all the overseas spending support we give to other countries? What about the U.S. bomber planes coming in at $87 billion - 47% more than estimated?

You can read more in the following articles: Budget Deal Hits Military Retirees With Pension Cuts and Military Retirees: You Betrayed Us Congress.

According to this article, the $7 billion in savings over the next 10 years wouldn't even go to deficit reduction or paying down debt, but instead to finance increased government spending! You can read this article Fact vs Fiction on Military Personnel Costs and The Truth About Military Personnel Costs to refute the false claims about the military personnel spending accounts in relation to the budget/deficit.

A Legislative Action has been set up through the Military Officer's Association of America to easily contact your state reps and let them know you don't agree with cutting military retiree pay. This form is so easy to use; just put in your name and address and hit send - it will automatically send to your state reps and the form is pre-filled (although you can change it to write what you want as well).

If you are a Twitter user you can can tweet about this using #keepyourpromise to spread the word. There is also a "Twitter Town Hall" online event tonight, Mon Dec 16, at 9pm EST.

 

comments | | Read More...

Not Suffering From Down Syndrome

Tuesday, 29 October 2013

There was a discussion today on FB over a comment saying that people with Down syndrome suffer.

The reference to suffering from Down syndrome is seen in articles (the last 2 paragraphs) and websites describing the condition.

Here is the thing though: Down syndrome is not a disease. It is a syndrome. And this syndrome is a set of symptoms and/or characteristics indicating the existence of a condition.

Down syndrome is an extra chromosome. That extra chromosome does not cause the people who have it to experience pain from the extra chromosome. Pain would equal suffering. You do not suffer from the extra chromosome.

Yes, there are a list of potential health problems that can be associated with Down syndrome, but are not unique to Down syndrome; they can also be found in the general population.

Individuals with Down syndrome may be at a higher risk for certain health conditions, but not all people with Down syndrome will have every potential health condition listed. There are some people with Down syndrome who don't have any other health problems at all.

Kayla is relatively healthy. She doesn't have too many of the associated health conditions.
- She had a small ASD that closed on its own and a small PDA that was closed with a cardiac catheter
- She's had 4 sets of PE tubes in her ears
- She has Celiac Disease
- She has some vision issues and wears glasses
- She was recently diagnosed with mild/moderate sleep apnea and will probably need her tonsils taken out as a first plan of action

Who is to know if Kayla would have had any of those issues if she didn't have Down syndrome? Joe has had his tonsils and adenoids out and he still snores!

Dictionary.com defines suffering as: to undergo or feel pain or distress

Even with that small list of health issues; Kayla still wasn't/isn't suffering from any of those. She might have been suffering from a headache from eye strain before getting glasses, but she never expressed it if she was.

Many adults with Down syndrome do have dementia and/or Alzheimer's disease when they get older. It is more correct to then say that they are suffering from Alzheimer's disease (although it could be simply stated as saying they have Alzheimer's instead of suffering from). The 'suffering' would be referring to the condition/disease and not Down syndrome. 

You don't suffer from Down syndrome in and of itself. But some of the specific medical conditions that someone might also be diagnosed with could cause pain, and then suffering, if not treated.

Interesting that Dictionary.com also says, "It is better to avoid using the words suffer and sufferer in relation to chronic illness or disability. They may be considered demeaning and disempowering. Suitable alternative are have , experience , be diagnosed with."

Exactly. Kayla has Down syndrome, she does not suffer from it. 


 

comments | | Read More...

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.

 

comments | | Read More...

Resources for Down Syndrome Awareness Month

Sunday, 6 October 2013

20 years ago Band of Angels produced the first calendar featuring children with Down syndrome. They eventually stopped producing the wall calendar, but due to popular demand have brought back Beautiful Faces: 2014.  The price is currently $16.50 but goes up to $19.00 after Oct 15.

Woodbine House - a large source of books and DVDs on disabilities for parents, teachers, kids, and professionals - is again offering all Down syndrome-related materials for 20% off. I hate to admit it, because I want to stay in denial about my little girl growing up, but I think it's time I ordered The Girls' Guide to Growing Up and/or Teaching Children with Down Syndrome About Their Bodies, Boundaries, and Sexuality.

Anna's Angels funds research to improve the cognitive and communicative ability of individuals with Down syndrome.

Tribute 21 is the First Annual Masquerade Ball benefiting Research Down Syndrome.

If your Senators and Representative haven't signed on to the ABLE Act, contact them next week and encourage them to do so. This Act will allow for tax-free savings account for individuals with disabilities. This would supplement,but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.

The NDSS has a "Get To Know Me Poster" and lesson plan for elementary age students.

NDSS Signature Clothing Line from Rhyme and Reason - when you purchase any R&R product 10% goes back to NDSS, and when you purchase a signature shirt then $5 goes back to NDSS. New styles in Women, Men, and Kids are out now.

Other ideas from NDSS on Down Syndrome Awareness Month.


 

comments | | Read More...

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>

comments | | Read More...

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?

 

comments | | Read More...

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.

 

comments | | Read More...

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] 

 

comments | | Read More...

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.


 

comments | | Read More...

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.

 

comments | | Read More...

Dignity of Risk

Tuesday, 23 April 2013

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.

comments | | Read More...

A Fact, A Fallacy, A Photo

Thursday, 21 March 2013

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:



  

comments | | Read More...

Who I Am

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...

 

comments | | Read More...

Awareness, Acceptance, Advocacy, Action

Wednesday, 20 March 2013

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.

 

comments | | Read More...

Modern Families

Friday, 8 March 2013

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." 

comments | | Read More...

Use Another Word

Wednesday, 6 March 2013

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.

 

comments | | Read More...

Countdown to WDSD

Saturday, 2 March 2013

March 21 is World Down Syndrome Day. The date, written as 3/21, was chosen because Down syndrome is 3 copies of the 21st chromosome.

Down Syndrome International is celebrating World Down Syndrome Day with their Lots of Socks campaign.

Gail Williamson, from Down Syndrome in Arts and Media is posting 21 Quotes in 21 Days from 21 People with Trisomy 21.

The International Down Syndrome Coalition for Life has a few special events planned leading  up to WDSD.

On Twitter use #WDSD.

Down Syndrome: The Big Picture exhibition is counting down to a 3/21 release.

The National Down Syndrome Society is celebrating with "Do Something Extra" and has a list of suggestions and ideas. (What a surprise it was to see a picture of Kayla on the bottom of that link!)

GRAB THIS BUTTON

 

comments | | Read More...

We Happy Few

Thursday, 17 January 2013

Matt Walker, an actor and filmmaker in Sydney and Los Angeles, has an older brother who has Fragile X.

He is directing a feature length documentary called We Happy Few. The film is about "giving a deeply personal insight into the intellectually disabled community in today's fast paced world – filled with inspiring first-hand accounts of achievements (against all odds) and frank discussions on the struggles facing this community today and into the future."

A couple of quotes from the trailer: "At the end of the day there are over 650 million people around the world - and the number is growing every single day - with people with disabilities globally that deserve to have their stories told accurately, fairly, realistically, and whenever possible, told by a person with a disability."

And this one from Gail Williamson (director of Down Syndrome In Arts And Media) “There is a lack of availability of images, and the more images that are put out there the more acceptance overall in our world.”

Just watching this short, almost-six-minutes trailer leaves me wanting to see more; to see the rest of the story. I hope Matt is able to see his vision through to the full documentary.

comments | | Read More...

Purple Stride

Monday, 12 November 2012

Today is exactly 4 months since my dad lost his battle with pancreatic cancer.

For the past 3 years he participated in the Pancreatic Cancer Network's Purple Stride walks to raise awareness and funding for pancreatic cancer research.

One of my regrets is I didn't have a chance to make it to FL to walk with him in one of these walks.

Last year he spoke as a survivor. I have tears just thinking about that. Last year: a survivor. This year: he won't be there.

His memory and advocacy efforts will continue though. My brother and his family, and my dad's wife and her family, all walked together in a Purple Stride event in TN last month.

I found a Purple Stride walk in Savannah, GA and my family will be walking in honor, and memory, of my father.

The five-year survival rate for pancreatic cancer is a mere six percent. Nearly 44,000 people will be diagnosed with pancreatic cancer this year.

November is Pancreatic Cancer Awareness Month. I'm pledging to be a visionary in the fight against pancreatic cancer.

If you can donate to our team please know it is much appreciated!



Click Here to Donate

comments | | Read More...

Just Like You

Friday, 2 November 2012

The Down Syndrome Guild of Greater Kansas City produced a wonderful DVD called Just Like You - Down Syndrome. The informational DVD showcases 3 young people with Down syndrome and their friendships with people who don't have Down syndrome. It's educational about what Down syndrome is, and isn't, and the value of their friendships. This is something that schools would benefit from showing!

I love when Rachel says "It's just one part of my beautiful self!"

 

comments | | Read More...