Chromosomes

Monday 31 October 2011

I can't believe it's Oct 31 - already! Made it through another year of blogging for 31 for 21 and Raising Awareness ... one blog at a time.

This is a picture of chromosomes. Not just any chromosomes though. These are Kayla's chromosomes. This is Kayla's genetic make-up. These squiggly lines are what make Kayla ... Kayla.

23 chromosomes from me.
23 chromosomes from Joe.

...and then a little extra on the 21st chromosome.

Trisomy 21. Triplication of the 21st chromosome. Did the extra come from me (most likely), or Joe (possibly)? It doesn't really matter though because it's there.

And the rest of the chromosomes are from both Joe and me. Pieces of us that make up Kayla. More of the other chromosomes than the extra chromosome, yet that extra chromosome, small as it is, makes itself known in so many ways.

Psalm 139: 13-16
For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.

Is there anything more that needs to be said? She is fearfully and wonderfully made.
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how do you say "

Sunday 30 October 2011

A couple quickies:

—Very excited that I'm going to Thailand in late December to visit Carrot Cake Zaikowski! Thanks to everybody who signed up for my Barrelhouse poetry workshop or spread the word about it, and of course thanks to Barrelhouse! How about poetry, huh?

—NOÖ [13] is out! You should read NOÖ [13] if you like  dance-offs, Russian salads, laundromats outside of burnt down malls, people who give you their ADD medication for your birthday, Ivan Lendl nostalgia, Hawaiians with machine guns, fake boyfriends, people who marry houses, confused police, sisters who are boxes of snakes, sisters who threaten you with ginsu knives, pummelhorsing social compromise, meat screams, oysters collected by widows, letters to jailed Lil Wayne, hearts too full of apples and wind, slut bags, triangle booth sandwiches, fucktrys, lung balloons, the bicycle in the wrong part of the neighborhood, the fast snapping motion of a neck during the fickle stages of a swan-dive, whiskey & chocolate, roller hockey coaches, furniture apocalypses, people who swallow entire friends, and eerie floating underwear.

—Speaking of NOÖ, Juan Carlos Reyes very kindly interviewed me about it for a profile on Zine Scene, which you can read by clicking here. Thanks, Juan!

—Dark Sky 14 is new on the website and Dark Sky 13 is available to order. Both are the best supermarket dolce de leche cake you've ever eaten, which I know seems like a paradox (both?!) but trust me. I wish I knew how they did that 3D book looking thing.

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The Shape of the Eye (book review/giveaway)

Congrats to winner Becca!

I was asked if I wanted to review the book The Shape of the Eye by George Estreich. It is a memoir on "Down Syndrome, Family, and the Stories We Inherit." I had seen this mentioned on FB and a few blogs and put it on my "to-one-day-read" list. The review came at a great time - just in time for National Down Syndrome Awareness Month.

I enjoy reading other books of other parents' experience with raising a child with Down syndrome (and obviously one reason why I follow so many blogs!) It's nice to find out that you're not 'the only one' who felt a certain way, or dealt with things a certain way. Sometimes you feel like it's just you until you read someone else's story and it helps to validate your own feelings.

Sometimes other people can sum up your own complicated thoughts in a couple of sentences. When I read this in his book, "If Down syndrome were ordinary in the world, if a commonsense view of dignity and personhood and capability prevailed, then perhaps our early days would have been easier. But Down syndrome is not ordinary in the world." it reminded me of my post on Hope and Normalcy and in the end saying that maybe if Down syndrome happens so often, it must be a 'normal' part of the genetic make-up,  and how different the delivery of the diagnosis would be if the world looked at it this way. "If Down syndrome was ordinary in the world." Yes, indeed. If only the world did look at it that way.

As in every personal story there are differences too; George's story of raising his daughter differs from mine in that his mother is Japanese. When Laura was born and the doctor mention Down syndrome and a few of the characteristics she had - such as the upward, almond-shaped eyes - George was able to explain that away as inheritance since his mother is Japanese. For me, the first time I looked at Kayla's eyes I knew she had Down syndrome because of those almond-shaped eyes.

I like his take on 2 of the most common stereotypes: that children with Ds are sweet, and that they are stubborn. He asks, "How can both be possible? If they are stubborn most of the time, or half the time, can they still be counted as sweet?"

While this memoir does describe Laura's birth, diagnosis, the aftermath, how they felt, how they came to accept it, how it became part of their lives ... it also goes deeper and beyond their own story of raising Laura. He explores how our attitudes about Down syndrome have come to be shaped by the descriptions and writings of John Langdon Down.

I enjoyed the personal family aspects of the memoir, but for me the most interesting chapter was the one on John Langdon Down. Mr. Estreich did a lot of research for his own knowledge after Laura was diagnosed, and for his book. I admit to not having done much research on the man. The only thing I really knew about him was he was the first person to describe individuals with Down syndrome and their characteristics ... and that is how it came to be named after him.

I knew that Dr Down described these individuals as "Mongolian" because the upward slant of the eye, but I didn't realize the history behind that. The whole chapter is very fascinating ... how Down tried to classify the people with Ds into a race category; that he couldn't comprehend how they were born to Caucasian families yet had "Mongolian" features - so he thought it had to be a degeneration in the womb. Initially he speculated it to be the cause of tuberculosis.

I know that people with Down syndrome existed long before it was described; and this fact is written so eloquently in the book, "...the children existed before they were discovered; what changed, after Down, was the way they were known....even though we have rejected the name he chose, the terms of his description are still with us." 

One of the biggest revelations in this chapter, for me, was the fact that John Langdon Down had a grandson, also named John Langdon Down. This grandson was born after the elder John Down had passed away. This grandson was born with ... Down syndrome. I find that so ironic and fascinating. I keep thinking about that fact and wondering if anything would've changed with his view and descriptions of Ds if he had been alive to know his grandson. (Also, how have I been in the Ds 'world' for 8 years and never heard this tidbit before? I can't believe I haven't come across that until now!)

The Shape of the Eye is a poignant and wonderfully-written story. It is a book that I think should be included on the list of books for new parents to read. I'd like to give my copy away to a reader ... just leave a comment on this post and mak sure I have a way to contact you if you're a winner.

*This isn't a requirement to enter ... but since it is DS Awareness Month and I've been blogging for 5 years now... I'd love it if you left a comment letting me know something you've learned about Down syndrome just from me sharing about my life with Kayla.

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Down Syndrome, College Experience, & Marriage

Saturday 29 October 2011

There are so many programs for students with disabilities opening up in colleges all around the country. It makes me feel hopeful for Kayla's (and her peers) future. For opportunities that will be available to her.

Even though Kayla is only in elementary school I've been 'following' the College of Charleston's REACH Program since Joe received orders for Charleston.

A couple months ago there was article about students in the REACH program being able to reach their college dreams.

It was mostly a positive article, but there were some things I didn't realize. While this is a 4-yr program and the students attend academic classes, receive career counseling, have internships, get on-the-job training, and live in dorms with typical college students, they won't receive bachelor degrees; instead they'll receive certificates if they complete the program.

Despite not getting the bachelor degree I still thing it sounds like a wonderful program and great life experience. More doors will be open to these students for completing this program.

The problem is the cost of the program. It sounds like they are still paying the same cost as students who are getting their degrees. 16K for in-state residents (24K for out-of-state) and another 11K for room and board.

"Students from lower-income families are eligible for PELL Grants, some money is available from the Vocational Rehabilitation Department and a few scholarships are available. But students aren't eligible for lottery scholarships or student loans. The cost largely falls on families and leaves out many who could benefit from the program. "That's a tragedy," she said. 

Last year, five students began the program, but two had to leave before the end of the school year because of financial problems. A third student couldn't afford to return this year."

So they have the same cost as typical students, and go through 4-yrs like typical students, yet they aren't eligible for lottery scholarships or student loans. How frustrating because that limits families who just can't afford it. Yet the benefits from it are almost priceless: "And students with disabilities who receive even one year of post-secondary education are twice as likely to be employed and earn 75 percent more than those who do not."

Then there is the story of Craig Blackwell, who has Down syndrome, and owns his own home. Yet, the frustrations I touched on in my Medicaid, SSI, SN Trust, Oh My! post ring true in his case.

Mr. Blackwell is engaged. He met his girlfriend at an NDSC convention 9 years ago and have been a couple ever since; engaged the last 4 years. He lives in Louisiana, she lives in Oklahoma. They both get their benefits through their state's programs. If she moves to his state she'll lose her benefits and the same if he moves to OK. It took him 14 years to get the waiver in Louisiana and if he moves he would have to start all over again.

The only thing he wants now is to marry his girlfriend and have a place to themselves. But for now they have a long-distance relationship with the help of the phone, Skype, and Facebook.

It just doesn't seem fair. He owns his own townhouse, but can't get married because if either of them move to a different state they'll lose needed benefits and have to start all over.

Things have to change for people with disabilities to be afforded the same life experiences as those without disabilities.

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"Sanctuary"

"Sanctuary"

I swear it's the hardest part:
All the signs of us growing apart
when a dusty old movie scene
was once something clear and pristine;

And as the dust is blown,
all of our good memories fade.
As the old oak is buffed,
I see that not much at all is saved.
This realization is emblazoned:

Scorched across the cranium,
melded to my medulla
are those scathing times and trials
where I became the slave
and she was the ruler.

Foolish her;
but the bigger fool is me;
pleading for hollow sympathy
with recesses full of iniquities
that have stolen the essence of me.

The best of me is trapped
between a smaller me
that still laps up wounds
and a larger me
that may relapse soon.
Why do I still swoon?!?!

Why do I sit and croon;
resembling the hounds
that howl at the moon
as if that which we had
will return again soon?
Am I the loon? Am I?

Do what you must.
Save me.
Tell me that I'm crazy,
my methods of coping are lazy
and how much it shouldn't faze me.
If that doesn't work, tase me.

Shock me into submission.
Render me numb to my subscription
of unsavory retention
that is less like passion
and more like perdition.

Demand my undivided attention.
Cave me;
forging a path to my new mission.
Pave me.
Send me on a brighter expedition.
I know you won't enslave me.
Give me love; not an exhibition.
Save me. ♥

Written By: Devin Joseph Metz

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Down Syndrome in the News

Friday 28 October 2011

There have been several news articles about Down syndrome over the past few weeks.

A few of the articles pertain to a new study that was recently released showing Parents, Siblings, and People With Down Syndrome Report Positive Experiences. More on this study: Down Syndrome's Rewards Touted as new Test Looms, Inspiring Portrait of Down Syndrome at Odds With Perfect Baby Pursuit, and Down Syndrome Awareness Makes A Difference.

Three surveys were conducted by doctors from Children's Hospital in Boston. The overall results "suggest the reality of Down syndrome is positive for a vast majority of parents, siblings and people with Down syndrome themselves."

Just over 2000 parents or guardians were surveyed and 79% reported that "their outlook on life was more positive because of their child with Down syndrome."

For me, the more important part of the survey results were from the adults themselves who have Down syndrome - "99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked."

People with Down syndrome do not suffer and live less-than desirable lives. They are happy with their lives and happy with who they are. Isn't that what we all want out of life?

In other news ... a Down Syndrome Consortium has been formed between the NIH and several Down syndrome groups. This sounds like positive and promising new since Down syndrome research is so underfunded by the NIH (less than .01 percent of its research budget). A focus of the consortium will be the implementation of the NIH Down syndrome research plan, which set research goals for Down syndrome, based on previous research accomplishments and the need for research in areas in which evidence is lacking. The consortium will meet two to three times a year.

An update on Punky (that I blogged about during last year's 31for21 challenge) - the first animated show featuring a character with Down syndrome; it has been picked up by Target Entertainment and they will be giving half of the earnings to Down Syndrome Education International. Punky is produced in Ireland and Target Entertainment will launch it internationally.



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Classroom Language Skills

Thursday 27 October 2011

I highly recommend the book Classroom Language Skills for Children With Down Syndrome. I wish I would have read it before Kayla started school. I feel like it would've given me some ideas on what to ask for in the IEP meetings, or different things to try.

One of things that I found interesting mentioned having what your child is working on in ST correspond with what they are doing in the general ed curriculum. An example was if the science lesson is on tornadoes the vocabulary words would include spheres and cylinders. The ST should get the vocabulary words so the child can work on those words since it pertains to the lesson they're learning.

I know I'm not explaining it as well as it's described in the book, but it did make a lot of sense! Shortly after reading that is when Kayla brought home the study paper on the continents. I thought that was a great example of if the ST had this she could have been working on the articulation of the names of the continents with Kayla.

I checked this book out of the library but am ordering one for myself so I can read it more thoroughly and keep it for reference.

Another book that I'm getting a lot of ideas from is Teaching Math to People With Down Syndrome and Other Hands-On Learners. One section sounded like she was describing Kayla. It was kind of like an 'ah-ha' moment. "There is a pattern from 14-19 where you say the 'ones' first and then the 'teens.' This pattern is opposite from the pattern used in 21 and beyond. Some students will have difficulty writing down the teen numbers because they hear the digit in the ones place (such as four) before they hear the indicator for the tens (teen)... thus writing 41 for 14. Then 11, 12, and 13 don't fit any pattern. I have found most young students do not hear the sound "thir-" in thirteen as indicating 3."

Thirteen and fourteen are difficult for Kayla and for us to know if she is differentiating them. She can identify them written, but if she is counting out loud (not looking at or pointing to anything) her pronunciation of 13 and 14 are almost identical. And sometimes I think she thinks the number is the same when she says it. So it's hard to know if she is counting 13, 14, 15 when rote counting. I have also seen her write her teen numbers backwards and now I understand why she's doing it. She's hearing "four...teen" so she's writing the 4 first.

So lots of good reading in these books ... just wish I had started earlier!

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Special Exposure Wednesday

Wednesday 26 October 2011

Fun at the West Farm Corn Maze:
 

 

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history is a made thing. it doesn't just happen. it's made and recorded, and that record is part of its making. history is made of subjects and objects. to witness is to be a subject in history. to witness is to not allow others to make the story for you. let's say Oscar Grant's name and know what we mean when we say it. let's say Scott Olsen's name and know what we mean when we say it. let's stay peaceful and know what we mean when we stay.

Oakland Police Critically Injure Iraq War Vet Scott Olsen During Occupy March: http://www.huffingtonpost.com/2011/10/26/iraq-vet-oakland-police-tear-gas_n_1033159.html



WOMAN IN WHEELCHAIR GASSED BY OAKLAND PD:



SHOT IN THE HEAD WITH A TEAR GAS CONTAINER:

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Medicaid, SSI, SN Trust, Oh My!

Tuesday 25 October 2011

I will be the first to admit that I have a limited understanding of special needs trusts. I know this is something that we should have set up for Kayla already. We know we need to do this, we know it's important. We've done a little research and attended workshops. I still find it all very overwhelming and somewhat confusing.


The basics of what I understand are that special needs trusts are for individuals with disabilities to help ensure their needs are met. Most people with disabilities rely on some form of government assistance for health, care, housing, food (Medicaid/SSI).

The other basic fact that I've heard, but don't fully understand, is that 'you' (ie person w/disability) can't have more than $2000 in countable assets (even including having a vehicle that was given to them) at any one time. Well they can, but then the amount of benefits they are receiving will be reduced, or they can be disqualified altogether. I'm not sure how the $2000 works - if it's checked at the end of every month or what.

I understand that there has to be rules, regulations and guidelines to receiving benefits/assistance; I understand there should be a real need to use these services ... but to be limited to $2000? Really? That frustrates me. I'm frustrated for Kayla, and a bit pissed off about it too, to be honest.

We want our kids to be as independent as they can be, yet they are being held back by this $2000 limitation. What if Kayla gets a job making enough that she can have more than $2000, but not enough to really live off of without those benefits? It feels like it's set in place to not allow growth and independence.

This affects people with disabilities from getting married, because once they are married their assets are combined and then they lose some, or all, of their benefits.

We teach our kids about the value of a dollar and the importance of saving ... but now I'm supposed to tell Kayla to be careful of how much she saves so she doesn't go over that $2000 mark? Can you imagine not being allowed to save more than $2000?

We can't even leave anything to Kayla in her name, we have to make sure grandparents don't do so either. It has to be left in the name of the special needs trust. Can you imagine having children and being able to name one child as a beneficiary on different accounts but your other child can only be named as a beneficiary on the special needs trust? Kayla can't be listed as a beneficiary on any of Joe's military paperwork. Talk about exclusion.

One of the workshops I went to explained that special needs trusts generally cannot be used for food, clothing, or shelter (or that is when you'll start seeing a reduction in benefits/assistance). "The purpose of this trust is to enhance the beneficiary's enjoyment of life. Typical benefits include lessons, memberships, vacations, and traveling companions." You know what I took away from that? Special needs trusts are basically set up for 'fun money.' I'm sure that's not the intent, but it can't be used for food, clothing, or shelter ... so that's my interpretation.

There are a lot of ins and outs of setting up a special needs trust which is why you need to go to a lawyer who specializes in that; to make sure everything is set up correctly.



In 2009 the Achieving a Better Life Experience Act (ABLE Act) was introduced in the Senate and House of Representatives.

The ABLE Act is to allow individuals with disabilities and families to create tax advantaged savings accounts to meet their long-term ongoing support needs related to education, health care, employment, transportation and housing. S.493 and H.R.1205 would allow an account to be established by or on behalf of an individual with a disability. The income earned on amounts contributed to an ABLE Account is tax exempt. The assets held in an ABLE Account would not be counted for purposes of determining an individual's eligibility to qualify for Social Security, Medicaid or other public benefits.   

A couple of bullet statements from the What is the ABLE Act and What Can it Do For You? 


Assets held in ABLE Accounts are specifically excluded from the income and assets tests used to determine eligibility.  This includes the current SSI eligibility requirements that prohibit beneficiaries from having over $2000 in assets at any one time.


Individuals with disabilities are discourages from participating in meaningful work, because for the most part, can't save earnings above their asset limits.


Families are discouraged from providing financial support because it may cause individual with disability to be disqualified from Medicaid/SSI.


Individuals with disabilities who don't have a special needs trust must spend those assets they acquire, such as small inheritance, or wages, in order to remain qualified for Medicaid/SSI.

The links on there have a lot of great information on what this can mean for people with disabilities and their families.

I feel there is a tremendous need for something like the ABLE Act to allow our loved ones with disabilities more opportunities to save money (just like any of us) and live more independently... to be afforded the same opportunities that everyone else has.

I hope by the time Kayla reaches adulthood something like this is in place. Contact your state representatives and encourage them to support the ABLE Act. 

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Dr Mobley on Health Matters

Monday 24 October 2011

A very informative interview with Dr William Mobley, MD, Chair of Neurosciences at UC San Diego. He discusses how discoveries in one area of medicine often has wider applications. He describes his transformative work with Down syndrome and the impact it may have on treatment of other diseases like Alzheimer's.

I had my volume turned all the way up and still found it a little difficult to hear everything, but I do like what he had to say regarding his research and the potential for many great things to come.  He talks about genes, neurotransmitters, the brain, Alzheimer's and his hope for the future of those with Down syndrome.

Dr Mobley says that he has this dream that a doctor goes in to the appointment with a future mom-and-dad-to-be and they've just been given the diagnosis of Down syndrome. And I want the doctor to say I know there's some concern because you've heard a lot about Down syndrome, but I just want to let you know medical science has made so many exciting discoveries in the last many years, so here's what I'd like to tell you. Your child will be born well, they will not have heart disease, they will leave the hospital on time, they will grow and develop, go to school with other kids, finish grade school, high school, go to college. They'll get a job, drive a car, get married, and you'll never have to worry about Alzheimer's disease again.

I feel like there is so much untapped potential in people with Down syndrome, and research by caring doctors like Dr Mobley are on the cusp of bringing it all out.



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"Roll Back(From The Future)"

Sunday 23 October 2011

"Roll Back(From The Future)"


My peers lend their ears
to the cold, hard concrete.
I'm too grand to be discreet;
So I lace up and plant my feet:


Young minds are wrapped
within the streets like sheets.
Souls scrape like soles against brillo.
They drag their dreams like pillows;
letting their heads mop the floor
but there is nothing clean
about a shot up liquor store
and a bloodied crime scene.
They robbed them once way back;
but on their way back,
they were ready to spray back.
They should've just stayed back....


.....Run the tape back.


Across the street from the crime,
a few feet from the scene
walked a gem dressed as a dime.
She started out as a teen:


Can't keep a low profile
when you're up an down the timeline.
She once started for awhile;
but always finished on the sideline.
Happiness was hard to find.
With her emotions much maligned,
she adopted a change of heart
and would let nothing change her mind.
It was difficult to look past
the murky musings of her past.
She grew tired of finishing last;
so she lived her life fast.
Every day was a mad dash.
She would flaunt and flash,
let men smack, squeeze and smash
and then lay there; counting cash.
A country girl with thick legs
as sweet and plump as watermelon:
The daughter of a deceased father
who can only cry from heaven....


....Choke those tears back.


Most of her money was taxed
to a man who never hustled.
He held verbal contracts
and his crew was his muscle.
They have the occasional tussle;
but she always called back
only to soon crawl back,
spread her legs and fall back.


His band of brothers
are the sons of weeping mothers
who gave up their freedom
so they could enslave each other.
He portrays the pusher.
They take place as the runners.
His shadowy figure looms
as they breach private rooms,
but he always wanted more;
"so dey broke down de door
and let da gunshots roar
on de Blood Clot dance floor....


....Pon De Replay."


So many lost lives
still try to run this relay
of fly-by-night fortune;
sacrificing themselves each day.


They try their best to hide away;
but their shame won't shy away.
They could work hard to find a way;
but they just waste their lives away.
Their choices have paved the way
that many may look to follow;
closing themselves within walls;
free falling until they are swallowed:
Devoured whole; but never spit back.
Street life intrigues every "him"
and it surely seduces every "her."
I wish that we could roll back....


....because I don't want to see the future.


Written By: Devin Joseph Metz

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The Wonder of a Toddler

In my guest blog post on Parents.com Having a Child With Down Syndrome: What Nobody Tells You, I write that eight years ago I wouldn't have known that October was National Down Syndrome Awareness Month. I'm fully aware that the only reason I know this now is because I have a child with Down syndrome. I think it's safe to say, that if Kayla was born with 46 chromosomes I don't think that eight years later I would know this was Down Syndrome Awareness Month.

Because why would I? It wouldn't have impacted my life. It's not something you hear mentioned in the public. Outside of the "Down syndrome circles" does anyone talk about it? I guess it's possible, like some of you who read my blog and don't have a child with Ds, I might have still started a blog, and I might have come across a blogger who has a child with Ds, and maybe followed that blogger, and maybe I would have been aware, who knows.

I guess bit by bit the word is getting out there. All of the bloggers who are participating in 31 for 21 have readers who aren't directly impacted by having a child with Ds so they are becoming aware. Word is being spread in social media.

Then I came across the article Down Syndrome Awareness Month Opens My Eyes As a Parent. I realized it was written by a parent who doesn't have a child with Down syndrome and doesn't seem to have any connection to Ds at all ... just somehow became aware about October being DS Awareness Month.

She mentions watching video clips of the National Down Syndrome Congress We're More Alike Than Different campaign and said that they are getting their message across.

I thought, "Great!"

She went on to say that the campaign features young adults telling their stories and what she realized was that they love life. "They love their lives."

I thought, "Great!" again. I thought someone is getting the message that people with Ds are their own unique individuals with hopes and dreams and lives like everyone else.

But then. Then she said, "These earnest souls never lose the ability to be amazed; instead, they somehow retain the wonder of a toddler just discovering the world." And the bit about 'retain the wonder of a toddler' was italicized in the article. To emphasize it. To draw attention to it. To make it the main point of her opinion after watching the video.

If it wasn't italicized in the article I was going to do so in my blog post because that's the phrase I want to draw attention to as well.

In the paragraph above she mentions the videos are of young adults. Young adults telling their stories. Something about the phrase "wonder of a toddler" rubbed me the wrong way. These are young adults. The message is "more alike than different."

Yes, maybe some/most people with Down syndrome do have a more ... innocent (? Is that even the right word?) view of the world. Maybe they do have a more positive outlook? Maybe they do appreciate life more? Maybe they 'get' something that most of us don't? Maybe they know something we don't?

But they still deserve the respect of being treated like the young adults they are. They don't need to be described as having the wonder of a toddler. Maybe they just have the wonder of life. Of living life. Of loving life. Of exploring life. But not the wonder of a toddler.

I remember when Kayla was very young and frequently hearing things like "you get to enjoy her being a baby longer" and it would make me cringe. Inside I would think, "No! She is not going to be a baby longer. She's going to grow and develop at her own pace, but we will treat her as age-appropriately as we can." She might have delays, she might not be doing all the things kids her age are doing, but we are not going to baby her.

I just feel like this description patronizes these young adults into something less than what they are.

It doesn't give them credit for reaching adulthood.

It doesn't give them credit for being "the college student with dreams of singing on American Idol to the teacher's assistant who likes to dance and "get his groove on" to the exercise enthusiast ..."

I'm glad she has a new outlook on Down syndrome. She does say, "How dare I look at these families and assume their lives are more difficult than anything else? Maybe automatically "feeling sorry" for Down syndrome families is an insult of sorts. Who am I to say that their differences equal nothing but disadvantage?"

But I wish the whole message she got was that they are just people. Just people with an extra chromosome who deserve the same amount of respect.

Or am I the only one who was disappointed in the "wonder of a toddler" comparison?

ETA: Thanks for the comments so far! Appreciate your thoughts on this as well. I admit I probably was a bit overly sensitive when I read that and took offense to it! I felt it perpetuated yet another stereotype - that people with Ds are always, or will always be, 'child-like.' And by continuing to have that mentality about people w/Ds it makes it hard to make any progress with the impression society in general has on individuals with Ds.

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Update on Beautiful Eyes Contest

Saturday 22 October 2011

Remember the picture I submitted of Kayla for the Prevent Blindness America's Most Beautiful Eyes Contest? The public voting period ending on Sep 30th. The top winners from each state were named and Kayla won for the state of SC!

Now the next round will be determined by a panel of judges selected by Prevent Blindness America. They will chose 5 from all the state winners ... then a panel of 3 celebrity judges will narrow those 5 down to the top 3. Winners will be announced Nov 19.

Our local paper did a nice write up of Kayla being the state winner: The Eyes Have it for Local Girl.

And she is even at the top of the front page on the hard copy edition of the paper (I wasn't expecting that!):

You can see a list of all the state winners here.

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Blog Hop for Down Syndrome

Friday 21 October 2011

Crazy Beautiful Love is hosting a Blog Hop for Down Syndrome ... today ...Oct 21. Because as you all probably know by now, Down syndrome is also known as Trisomy 21 because of the extra copy of the 21st chromosome.

If you're visiting my blog for the first time - hello!! and welcome. I'm Michelle, and I'm married to the military. The Air Force to be exact. By way of my husband Joe! I have 2 kids. Kayla is 8 and she is the reason I'm raising awareness for Down syndrome (she also has Celiac Disease). Lucas is 3 and is already becoming a very caring and concerned brother! When they are playing in their pretend kitchen with play food Lucas tells Kayla she can have "this pizza because its gluten-free", but she can't have his because "it has wheat." Love watching their relationship develop!

Check out my post just below this one to discover some of the "perks" of having a child with Down syndrome!

Now to get to hopping to check out some new blogs!






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The Perks of Down Syndrome

Thursday 20 October 2011

Whether you find out pre-natally or post-natally that your baby has Down syndrome the first things you will be told are all from a clinical/medical standpoint. Most likely it'll be a doctor or geneticist who will talk to you about what Down syndrome "means" and then you'll probably get on the internet when you get home and research, research, research. Most of the information will still be of a clinical/medical variety.

You'll be told about the characteristics, delays, and potential medical issues.

Your baby will probably be described like this:
- the most common type of genetic defect/disorder
- chromosomal abnormality
- low muscle/tone (described as 'floppy')
- low set ears, some ears have a fold
- curved pinkies
- facial abnormalities
- small mouth
- tongue protrusion
- high palate
- flat nasal bridge
- flat back of the head
- small nasal passages
- upward slant of the eyes
- epicanthal folds
- small/short/stubby fingers
- extra space between first/second toes (sandal gap)
- teeth may come in late and out of order
- teeth may be small, unusual shape, out of place, missing, razor-sharp
- chest might be funnel shaped or pigeon breasted
- short in height


Potential Medical Problems/Other Issues
- slow to gain weight
- trouble breastfeeding
- hearing loss
- vision problems
- developmental delays in gross/fine motor, speech, cognition
- intellectual disability (or mental r*tardation)
- potential for obesity
- early onset of dementia or Alzheimer's disease
- shorter life span
- various congenital heart defects
- feeding issues
- gastrointestinal problems (duodenal atresia, imperforate anus, pyloric stenosis, tracheo-esophageal fistual, Hirschprung's disease)
- increased chance for having Celiac disease
- increased chance for having leukemia
- respiratory problems
- sleep apnea
- thyroid problems
- atlantoaxial instability
- seizures

Whew! That's a lot of information to take in all at once about your baby ... a baby whom you haven't even had the chance to get to know yet.

Please remember every child with Down syndrome is not going to have everything on those lists either.

But can you imagine leaving the hospital, or doctor's office, with all that info? It all sounds so very depressing and negative doesn't it?

What if, in addition to all the clinical/medical descriptions of Down syndrome they also give you another list?

What if someone actually said ... "Having said all that ... there are actually some PERKS to having Down syndrome! Yes, perks!"

What are some of these perks? (Many of these apply to special needs in general, not just specific to Down syndrome. Some of these are tongue-in-cheek as well.) And I don't mean the typical perks you hear about 'life lessons learned' such as learning to be more patient, unconditional love, your child will teach you so much ... not those kind of perks.

Perks of having a child with Down syndrome (or special needs)

- You learn how to speak in a whole new language; the language of acronyms. DS, T21, IFSP, IEP, OT, PT, ST, DT, DD, ID, AFO, AAI, NDSS, NDSC, NADS, LRE, NCLB, FAPE
- You might learn sign language; which you may, or may not, have done if your child didn't have Ds.
- You'll have a whole team working together to create an IFSP just for your child. Your child will have individual attention and 'fun' therapies to work on development.
- This will later turn in to a whole team of people working together on your child's IEP. They get to have all these people concerned about their education and making sure they are getting what they need to succeed in school.
- People are more apt to forgive your child's behavior because, hey! They have Ds and don't know any better!
- When you visit Disney and other amusement parks you can get a special needs pass and you won't have to wait in the long lines for all of the rides (How come they don't tell you THAT in the hospital?!)
- Your child can get the The National Parks Access Pass - a free lifetime pass that allows entry to recreation sites managed by 5 federal agencies (and allows free entry for all those in the same vehicle, or up to 3 adults on per-person entry fees.)
- There are churches that provide free respite care for kids w/special needs and their siblings
- You might find places that offer free times for families w/special needs (for us locally there is the Children's Museum of the Lowcountry that once a month opens 2 hrs early for free for families w/special needs only;  Monkey Joe's has a similar program as well.)
- You will have a new appreciation for what it takes to reach all those wonderful milestones.
- Your child has a day that is internationally recognized as World Down Syndrome Day (Mar 21)
- There is a whole month devoted to awareness of Down syndrome (Oct!)
- There are awareness walks that happen all across the country just for Down syndrome!
- There are local and national support groups for Down syndrome.
- You can attend national conventions about Down syndrome which end up feeling like a big family reunion.
- You will join a secret club. You'll see other families with a child with Ds and you'll make eye contact, smile, and discover the instant connection.
- You will discover a whole new community; online and 'in-person.' People whose paths you probably wouldn't have crossed otherwise will become your closest friends.

Added from comments:
- apply for the Katie Beckett Medicaid Waiver to get financial help for any medical or therapy needs
- better than all of these are the hugs

Please feel free to add to this list by leaving a comment on any other 'perks' to having a child with Down syndrome/special needs!

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"Black"

Wednesday 19 October 2011

"Black"

You polish those cuticles
from behind your little cubicle
and still find time to message me.
You let no deaf ear rest on me.
You seem to save the best for me
whilst others chase you desperately.
You ask for me especially.
Maybe you've seen the depth in me.
Well, there's no concise recipe;
but you still ask what's my deal.
Come here. Sit next to me.
I'll show you it feels
to be in the presence
of what many men lack.
Release your cares and lay back.
Lose the limelight. Become black.

Not much is made of lunch;
but I'm too hungry not to munch.
We disappeared after the meeting.
Your nosy girlfriends might have a hunch;
but I'm not concerned about that.
I just need you to fall back....
....as a matter of fact,
put that arch in your back
as I fondle those lovely follicles.
Fingertips take trips through hair
as things shift from quaint to volatile
the moment eyes lock and stare.
Your exude vanity; yet remain so fair.
To be honest, I'm slightly taken aback:
Your beauty transcends compare;
but I want a view in black.

Your black door and fancy bell
leads you down the stairwell.
My lungs may start to swell
as I take in that familiar smell.
I follow you to your room
and you make room on your bed
as I just shake my head
between words that are said...
...it's pretty safe to say
that I'm completely blown away:
I just love the way
you look in black lingerie.
You rub in that shea butter
after bathing in black soap with pearls,
black lips blow black polish on black nails
as your fingers loop through black curls.
They say the devil wears Prada;
but Satan's mistress would confess
to being hot under the collar
at the sight of your black dress.

I guess I came prepared:
Tightly braided hair,
three piece black suit
and dark cufflinks. Two pair.
Black belt to match the shoes,
black vest to match the socks,
and a black tie with designs
that compliment my black watch.
Cool Water is my fragrance;
but tonight it's Polo Black.
The lights are dimmed slightly.
The club is far from packed;
so let's find a place to sit.
I'm more glimmer than grit.
I'm more than charm and wit.
I have no game to spit.
You claim to know what I want
as you twist and taunt.
I just step and grip
while you continue to flaunt.
I won't lie to you:
I can't help but draw near
and whisper in your ear
things you never thought you'd hear.
Words may take you on a ride;
but I'm bound for deeper strides
as we grind and glide
through this floor of black heels and ties.
There's no need for inebriation.
I'm wrapped within the sensation
that comes from the elation
you exude with each gyration.
Drunken and dizzy without libation,
we gracefully move without concentration
until this dimly lit dance floor
gives way to illumination....

Hearts race under the moonlight.
Minds too cluttered to think.
As long as it feels right,
All I care to do is sink
deep within this shining abyss;
eyes closing upon each kiss
as it would be quite a remiss
to ever think to desist.
This is what is made of we.
Open your eyes. Look at me.
I've often thought about this day.
Listen to what I have to say:

I never thought
I'd see the day
that such a marvel
would come my way.
I had to mention
the things you say
always grab my attention;
even when you're away.
I'm captivated.
I'm aggravated.
I can barely take it;
but I'll navigate it.
I'll carefully cover these plains;
meticulously moving through membranes,
feeling every fiber, grazing every grain;
placing lips near hips to be stained.
I love the way you shine.
Your body is my shrine.
If you let me cross that line,
I promise to take my time.
If you will take the chance,
I'll make it worth the wait.
I know it's dark inside;
but I can see straight...
...straight through your inhibitions...
...let my hands send the transmissions
that place your fears under submission
as they fade into remission.
I have to tell you.
No better time than now
to wrap you in this warmth.
I'll show you how.......

Close the blinds.
I'll walk behind.
No need to lead the blind
when I'm all you'll need to find.
Kill the lights.
Does it feel right?
Sharpen your senses
in the stillness of this night.
Close the door.
Feet off of the floor.
This bed is our ocean.
Let me guide you to shore.
This is serious.
I'm far from delirious.
I have all my faculties.
I want you in full capacity.
Close your eyes.
Sever all the ties
that are bound to uncertainty.
This is the certain we.
Just take in deep breaths
whilst I take slow steps
up and down this chasm
yearning for more than an orgasm.
Can you even fathom
something so stark
as a traveling mind and body
surveying you in the dark?

Take me to your fill.
Don't cut me any slack.
Take full control of your will.
Don't worry about covering tracks.

Embrace that which you hold dear;
but don't bother looking back.
This world will soon disappear.
All that remains will be black...

Written By: Devin Joseph Metz

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Special Exposure Wednesday

And a couple of Lucas ...

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