Wednesday, March 27, 2013


Since I threw some gasoline and a match out there...I figured I'd share a sad/funny puke story.  You know, because I haven't provided many giggles lately.

I did not know what Emetophobia was until lately.  In case you don't either, it is an extreme fear/anxiety of vomiting.  As I hold my toddler who is whimpering and breathing like she's run a marathon, and after 3 days of the same with Elise, I figure this is worthy of a post.

I know nobody particularly loves to throw up, but there is a difference between that, and someone who is ter.ri.fied. of it.  And both of my sensory kids are that way.  Elise screams and tries to run "from" it.  If she holds a bucket, or hangs over a toilet, she seems to think it is inevitable...where if she's getting away from it, maybe she can fake it out.  It hasn't worked for her yet...not with this virus, not with chemo, not with any of it...ever.  And yet, she always tries.

(There has been a lot of unnecessary cleaning due to this habit.)

During and immediately after, she tries to burrow into your pocket...sometimes it feels like your very soul...

Charlotte is somewhat the same.  She is petrified of puking.  BUT she will man up at the last second and do her penance in an Easter basket.  A cute one.  With frogs.

However, she also cannot be touched during or immediately after. 

Elise has felt very sorry indeed for Charlotte.  And has tried to hug and pet her when Charlotte begins to scream with fear as the nausea rolls up...Which initiates the evil witch spitting and toddler-cursing and she scrabbles away from the very tight hugs.

It is a truly tragic cycle.


Human Rights.  It has taken a lot of forms in the last 200 years.  There have been insane amounts of arguments over those rights...

I am trying not to initiate the same fight with the same words today.  I am sure you can tell where I stand from my own religious statements over the last few years.  But I have a few analytical questions...

The idea behind same sex "marriage" is wanting to be viewed as a viable legal unit...correct?  So.  The government grants a binding unit term, that fulfills that idea, and those who hold the idea of marriage as a religious conviction do not have to be violated.  Marriage has always been between a man and woman.  Across the ages.  Across the moral convictions of virtually all primary religions.  Even cultures that accepted homosexuality.  We are literally trying to man-handle religion, the constitution, and everyone's moral convictions to force something that could be taken care of legally without touching religion or "rights".

What puts a bad taste in my mouth is that this emotional/legal right in the face of true life rights.

In the face of the abortion question:  The government and a small portion of the country have the right to offend multiple religions and tear a millenia-long tradition to shreds.  This same government has decided that if a pregnant woman is in a car wreck, and her unborn child is killed, the driver of the other car is responsible for vehicular manslaughter.  YET, if the child is unwanted for any reason, it can be killed at the hands of doctors as a mass of tissue and disposed of.

I, and others like me, propose that this is the ultimate human rights equality.
In very recent times, we see Ethan Saylor killed at the hands of off-duty police officers.  (This LINK takes you to a list of ways you can request clear justice for Ethan.)  Antonio and Gilberto , brutalized at the hands of on duty police officers.  Whether out of malice or out of ignorance, these things happened.  And there is nothing done because the victims were lesser humans, those with disabilities. 
And I propose to you Chromosomal Rights Equality.
If you support human rights then you support safety against brutality and the unthinkable by those sworn to protect.  If you support human rights then you support life. If you support human rights, then you protect the rights of all to have their religion to remain un-violated.  I'll be completely honest, I just don't feel that there is a lot of grey area here.
(If you agree, even with *just* Chromosomal Equality, please right-click and save the last picture, my awesome techie friend put together for me, and share.  It deserves to be seen.  It deserves to be said.  It deserves to be fought for.)

Hobbit Fun

Because I watched The Hobbit this weekend, finally...I thought I'd repost for fun, the treatise on why Elise should be an honorary Hobbit:

" later this month, I will address SPD (Sensory Processing Disorder) on a simpler, informational level...but Elise, I really feel, is missing the "full" button...I think she eats for sensory input, and doesn't comprehend that she is satiated until she feels sick. That said, if she could eat when she wants to eat, she would be on the Hobbit Meal Planning:

1) Breakfast
2) Second Breakfast
3) Elevensies
4) Lunch
5) Afternoon Tea
6) Supper

Actually, come to think of it, she would probably be very welcome in Hobbit Society. She could lobby for more meals in the day...and she is certainly the right diminutive size...she absolutely knows adventure when she sees it. She would have been an asset to Frodo and Samwise. Merry and Pippin would have passionately enjoyed her...maybe I should write her in to a fourth Lord of the Rings book and see what happens! :)

Her only drawback in the Hobbit world?

She has little feet.


Thursday, March 21, 2013


The only blog hop I'm really kinda excited about today:

Fact:  Elise is just like me.  She looks like me.  She has my quirks for good or for ill.  Stubborn, Sensory, and ADHD are all me.  She took my "style" or lack thereof.  Men's shirts and flip flops anyone?  She is enchanted by books.  She giggles over the oddest details in movies.  She reads people easily and tends to judge them on their soul and intentions.

Fallacy:  You can't tell someone they look like a child with physical disabilities or that they are "just like" a child with behavioral disorders, because that would mean they have all the same negatives. 

Nope,  we have the same eyes and strengths.  We have the same stubborn genes.  We have the same issue with "weird" socks.  We are twinkies.  But that doesn't mean that I have her plus +1 gene or all the medical issues or speech impediments.  And I will take it as a compliment that we are "two peas in a pod"...and so will she until she hits the 30 minutes of teen attitude...because that's all it feels like in the long run anyway.  For as crazy as my mama makes me, I treasure all the "you're just like your mother" comments over the years...even when I was trying to distance myself.


Last Easter's drive by kissing.  I must have looked like I needed one.  Generally thrilled that somebody caught it.

3.21 What Will You Do About It?

You're aware of Down Syndrome.  What will you do about that knowledge?

Today is the annual World Down Syndrome Day.  Chosen for it's date...3 copies on the 21st chromosome.  Numbers that make me happy in a sick, OCD, kind of way...They stand for something pretty huge in my life...and 21 is divisible by 3, with a result of 7 which is a prime number and has recurring religious significance... but we won't get into that today...It just makes me absurdly happy.

I went on a little tear yesterday about Lots-o-Socks Day...And I posted a smart aleck picture of my feet...naked...without socks...and closed it with a nod to one of my favorite sayings/verses: "Beautiful Feet"...and it occurred to me that not only may some of you not get the reference, but it would be such a great subject for today...

Isaiah 52:7
"How beautiful on the mountains are the feet of the messenger who brings good news, the good news of peace and salvation, the news that the God of Israel reigns!"

This verse is speaking about the idea that anyone who brings good news is beautiful.  The "Don't kill the messenger" thing, only in reverse.  In ancient times, not only did they walk in sandals or bare feet, but they were dreadfully gross after any kind of travel and folks had to wash their feet before entering a home or dining with those you had come to this verse compounds the transformation of the messenger by referencing the messenger's feet.  Not only does bringing good news make the messenger beautiful, but even the filth is gorgeous for it's participation in the travel and hardship to bring that gift of joy...and not just any gift, but the gift of Peace and Salvation. 

If you read the rest of the Isaiah chapt 52, it is talking about freedom of oppression and slavery.  Can you anticipate where I'm going with this? 

People with disabilities is this generation's segregation.  They are the ones that are repressed, their voices shut out, invisible, and abused in secret...with no consequences when the abuse is brought to light.

If I have heard one story of abuse of kids and adults with disabilities this year, I've heard 10.  Kids that have been verbally beat down, kids that have been secured with duct tape, kids that have been shut in bags or closets.  Kids that have been struck by teachers and aides.  People who have been taken from their lives and submitted to group homes' whims, people who have been hurt and killed by bullying or simple brutality.  And I've already addressed the horror of sexual abuse statistics and people with special needs.  All of those words that are highlighted are links to actual news stories...and if you Google, any of those words with Down Syndrome or Special Needs, you literally have endless stories...  I dare you to do it.  Does that make your blood run cold, or what??

These go up constantly.  And nothing is done.  Teachers aren't fired. (There are of course innocent people accused and I'm not saying there aren't exceptions.)  School systems have had multiple "incidents".  BUT WE AREN'T GETTING ANGRY???????  These keep going on!!!!!  And no one has drawn the line and said Gandalf-like, "Here, and no further!!!"

There is the silent abuse done by organizations that simply offer no support.  They refuse or hide behind peace for others or security or liability risks and don't invite those with special needs in...churches, public forums, private don't HAVE to say "We don't want you, don't come back"...all you have to do is make it too hard for them to want to come back.

In schools, there is the quiet, bumping kind of abuse, where teachers and the administration are ratcheting down the least restrictive environment in such a way that we as parents have to be aware of even how the wording of our kids' goals are phrased, so they can't be used against us down the road and force our kids into self-contained classrooms.

We are making it so difficult for these families, that those on the cusp, are terrified that "those kids" will  have "poor quality of life" and are aborting them before they have the chance to change our world. 

I have referenced the importance of the foot soldiers.  They are not "qualified"...they often don't do anything special but stand in the gap.  They fight for those that cannot.  And they are heroes.

So.  You are the foot soldiers in the battle for RIGHT.  You are aware.  What are you going to do? 

Are you going to flood the school systems with phone calls and mail when you hear of these incidents?  Are you going to get involved in your church to make sure that families with special needs are welcomed, supported?  Are you going to call your friends with kids with issues?  Have lunch with them and listen?  Are you going to give your wheelchairs to those who need them?  Are you going to donate to those adopting kids with disabilities?  Are you going to talk to those kids/parents at the play ground?  Are you going to include "those kids" to your child's birthday party?  Are you going to be a part of this revolution?  In short, are you willing to be changed to make a change?

You know.  You have feet.  Step forward. 

Let us not wallow in the valley of despair, I say to you today, my friends.

And so even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream.

I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident, that all men are created equal."

Sound familiar?  Stand up on your feet, whether they have crazy socks on them or they are bare naked.  Bring those beautiful things to your community and say to them with your actions "You have been released from oppression, whether from abuse or ignorance.  And I will be your friend."

And you will be more beautiful than a trip to the spa could have ever made you.

Wednesday, March 20, 2013

socks? really?

At the risk of hacking off my peeps, I don't get the newest Down Syndrome Awareness "thing".  It's called Lots of Socks.

Truthfully, I don't really get the whole wearing of colors to bring "awareness" for anything.  A shirt printed with pride, a website marked on it....whatever, that makes sense.  A color telling you to be "aware"?  Really?

I participate in World Down Syndrome Day and the 31 for 21 blogging initiative for Down Syndrome Awareness, not for you to know about my kid, to be aware she exists...hey, you can look at her and realize she's not like all the other's so you can understand more about my fears for her, my child's triumphs and struggles, and maybe become more encouraging and supportive...maybe make a difference and a more inclusive future for her later...

Money is cool.  Fundraising helps.  But you want to know what helps more?  Involvement.  Support.  Acceptance.  Talking to my child and those with her disabilities.  Getting to know those with any disabilities.  Shadowing or teaching them at church.  Simply welcoming them at church!  Teaching them and not abusing them.  Coaching them in special and typical leagues.  Working along side them.  Taking them to movies.  Asking them about their days and LISTENING to their answers.  Being a TRUE friend.

I'm pretty excited about this new group I'm seeing forming:  Down Syndrome Uprising here is another great article addressing it.

Anyway.  I'll probably blog for awareness...but I won't be wearing socks.  I tell you about my child, not so you'll feel sorry for her or me.  I blog so you won't see her as a scary stranger, so you will talk to her, so you will include her, and take the extra step to be her friend.

Help make a difference.

Be beautiful feet.  Not wild socks.

Monday, March 18, 2013

A PSA To Coaches

First of all, this was initiated not by a situation with my child, per say.  The fury was bolstered by the 10 years of the idiocy of coaches, however.  Which, as a parent has frankly been a confirmation of my perspective of my own 37 years of personal experience.

Dear Coach of Any Sport:

You are not only an adult and caretaker in my child's world, but you have a unique postition of power and influence.  You are not a parent, but you have charge of every child's psyche on your team.  In 30 years, these kids will still look back and hear your words.  In many cases, this will be the first tag that they have to assess their worth outside of their parents.  Your words can give them drive and persistence.  Your words can break their spirits.  And I'm not just speaking of encouraging the talented of the group.  It is highly unlikely that you are coaching the next generation of Michael Jordans, Anton Ohnos, Jackie Joyner-Kersees, Kristy Yamaguchis, or Babe Ruths.  But you are coaching people that will go on to have lives, jobs, and relationships.

So hear me now, if a parent comes to you and tells you that their child hates the position you have put them in, don't come back and tell that same parent that child cannot be motivated.  Who on this planet is going to be motivated by something they hate as the reward??  I'm not saying you have to "start" every player, but seriously, what's it going to damage to have a rotation?  I can't really be motivated to set fire to my own socks, but you might be able to motivate me to wait another 10 minutes in a disliked position with the promise of  15 minutes of my dream position.  There is another child who is more talented that loves that position?  Fantastic.  It will build their character to play a position that isn't their favorite or their strength.  They will learn the valuable lesson that they are not deserving of priority over all others thanks to a genetic fluke.  They will perhaps learn patience and not to bully.  They will learn that life isn't always roses and gum drops.  I further doubt that it will destroy their chances at the major leagues, the olympics, or a college scholarship to ride the bench for a quarter.  It may, however, encourage true sportsmanship and team encouragement.  At the very least, a taste of real life, may help perspective down the road.

As a matter of fact, I'll take it one step further.  I will go so far as to say that it is imperative that we "let" kids lose.  Why??  Because it is the making of their character.  Losing in games and in play, allows them to practice coping mechanisms to failure.  If they never have the opportunity to fail, they will never learn how to brush themselves off and go on, learning from their mistakes.  If their lives are so insulated that they never learn to meet defeat and go back to fight, the magnitude of a defeat in the future can be catastraophic, perhaps even final.

We literally have people who are out of work because they refuse to take a job that pays less or that is not making use of their degrees.  Why?  I suspect it's because they have never been trained at humility or patience.  It's not the "low kids" who "deserve" these lessons, to "get them used to disappointment".  It's a favour we can give to all kids.  Everyone will go through a time where they aren't living their dreams...and it will give them compassion to others in the meantime.

And since when can you not play a game for the pleasure of the game?  Why must we be the best of the best OR spectators?  Why can't we play to feel the pleasure of wind in our hair?  Kids are struggling with obesity.  And you know what I think??  I think it's because we celebrate the best and crush the average.  I don't want to sweat or experience discomfort, if I am only going to be abused when I try.

I am sick and tired of coaches that use their power to live out their own failed dreams and crushing boys and girls in the process.  You winning in your tiny league will never satisfy you compared to a young adult returning to you thanking you for your support and encouragement.  You seeing a child's strengths  and telling them, help them see their own.  Even telling a kid that they are excellent encouragers and that their words have power on their peers will be a gift.  I am not telling you to lie to kids and tell them that they will be the next star!!!  I am telling you that you can be the voice that you wish you had heard.

99% of these kids won't play in middle school, high school, or be sport professionals, but they will ALL go on to have relationships with people who are better than them and worse than them.  And their perspective of superiority/inferiority will transfer to all areas of life.  Compassion is learned, not innate. 

SO.  I beg you, PLEASE coach their minds and not their egos.

Tuesday, March 12, 2013

Request Response!

I've had several requests for Elise's favorite movies and shows.  As she has spectacular taste in non-verbal communication and misfits' triumph movies and shows, I have happily upgraded Elise's music tab at the top of the blog to her Audio/Visual Dept:

Thanks so much for asking!

I will try and keep it updated!  :)

Monday, March 11, 2013

Elise Knows

Elise LOVES movies of the underdog.  She loves movies where expectations are challenged.  Where the protagonist discovers that what he was searching for was there all along, and that it was, in actuality, the misfit that was NEEDED to fulfill their life.  Where the outcast becomes the hero.  I used to think it was a coincidence.  That she liked the colors or characters or the pratfalls.  I am not so sure anymore.

I think she identifies with the characters.  We will be watching Wreck It Ralph this week.  I'll update you if my theory is correct.

As for me, I cried over several scenes.  Seeing my girl in them.  And I'm not the only one that saw my kid, and for that matter, myself, in Vanellope.  Check out this THREAD in "Wrong Planet".

Which brings me back to my post of EARLIER.  Perspective. 

The long beloved movies, that are watched over and over in childhood and faaar into adulthood often have similar themes.  The misunderstood: finds a friend, finds a power, becomes the hope of all mankind.  Why are they so loved?  Because we all feel misunderstood.  We all want that friend or spouse that understands everything and loves you despite it...finds you more wonderful because of it.

Comedy and poignancy come from the over painting of a "universal truth". 

And then it hit me, (in carline, of course) that Elise is an over painted truth.  We are all different.  We are all missing components, we are all dealing with extra stuff from the theoretical "norm", which, honestly, simply doesn't exist.  She is just on a grander scale.

She is the Glitch, that makes us all look a little more critically at our carefully crafted worlds.  That makes us question our expectations.  That make us thankful for our own oddities and strengths.

The Perspective of Badasses

Yeah.  I know.  Bad word.  And I don't usually stoop to those tactics.  But a few weeks ago, I saw the funniest meme.  And I DIED laughing, I snorted, and tears ran down my cheeks.  And then a friend found it again this week, and told me she thought of me. 

While addressing the theology of the whole, "God only gives you what you can handle" thing will have to wait for another day... HERE is my favorite one from someone else...
NOW that said, I'm also going to send you to another blog that has a TON of language, so please hear the actual story going on!!  The Bloggess.
Why share that?  Well, beyond the fact that I laugh until I can't breathe every.single.time. I read that particular post, I like the idea of perspective.  I wrote a post about The Truth of Parenting that addresses the same idea of perspective.
I was thinking in carline, again...and found myself thinking about how I view my life when I'm tired and everybody is sick, versus, when I am rested and my kids are well.  I know that our healthy and "normal" is fairly similar to "typical" parents sick and exhausted days.  And I furthermore know, that our sick and exhausted days, are like the very best of healthy and rested days for Elise's friend Megan's family and our neighbors across the street.  And that the sweet and joyful moments are caused primarily by our perspective.  What are we comparing ourselves to?  Why?
Could we appreciate the beauty of boring without the crises?  Can we enjoy the high notes without the low?  As in Beethoven's 5th Symphony?
Most artists use loud and soft, dark and light, and constant layers to drive home the beauty and complexity of beauty.  I watched a documentary on the science of beauty when I was in high school and it utterly fascinated me. It reiterated over and over that beauty is in the subtle imperfections...the contrasts...
So, in your dark, look for the light.  Really see your blessings.  In your light, don't lose the shading, in your life, and most especially in others' lives...don't get accustomed to the easy...don't lose the awesome of boring...don't lose perspective.
One of my favorite verses is Jeremiah 31:21
Set up for yourself roadmarks,
Place for yourself guideposts;
Direct your mind to the highway,
The way by which you went.
Return, O virgin of Israel,
Return to these your cities.
To me, I think that God is saying more than just "Israel, don't get lost."  I believe that he is saying, "Don't lose yourself , your history, and your perspective in the present." 
And so it is with life.  With typical kids.  With special kids.  With your spouse and friends.
And the dark, light, special, and everyday become beautiful.


Wednesday, March 6, 2013

End the Word Day

I'm a word-o-phile. I LOVE words.  I often use words that are too ostentatious for silly occasions.  I use such giant words, that I have automatically built into my own vocabulary a translator.  Like Dora the Explorer, I semi-repeat myself like a dictionary for my kids, and for those who didn't read Victorian novels for fun in 3rd grade.

When Ann Coulter decided to degrade herself, I posted, ranting about her refusal to utilize her expansive education.  Irritated that she would choose to offend those who were already hurting from society's slights and lack of inclusion and down right angry by her offensive refusal to apologize.  Her attempt to neuter the power of words was ludicrous.

Words have power.  Power to change.  Power to change minds.  Power to poison minds.

My irritation grows with every year.  The fact that folks refuse to remove the word "retarded" from their vocabulary, when they have so very many delicious words to choose from!?!!?

Today I find the irony that those that continue to use the word retarded actually are branding themselves with the same word.

Merriam-Webster defines Retarded as:  slow or limited in intellectual or emotional development or academic progress.

Do you really want to leap about today's world proclaiming your lack of emotional development?  Your personal stagnation of academic progress?  Do you REALLY want the world to see your diminishing compassion to those who are constantly having to fight for their rights as contributing members of society?  When the ultimate summation of your behavior is quite simply:  Bully.

And bully is defined as:  a blustering browbeating person; especially: one habitually cruel to others who are weaker
Is that how you see yourself?  If not, go out and buy a thesaurus.  Grow some dendrites.  Become a better person.  Support those who need you.  Don't suffocate your ability to grow.  Refuse to continue to poison society.  Heal.  Support.  Grow.  Quite simply, quit being stupid.

Last year's post is HERE, with links to other thoughts...

Tuesday, March 5, 2013

Christmas Shopping??

You have no idea how excited I am for these dolls!!! I loved Downi Creations, but they went out of business years ago...and no other doll line has attempted to bring the beauty to the "typical" features of Down Syndrome to a doll.  Don't get me wrong, there are dolls out there with Down Syndrome...but frankly, they are creepy and hurt my feelings.  There is no way in this world would I give them to my daughter and tell her, "Here, these look like you".  This company has not only brought the beauty back, but it was brought not a toddler doll, but to dolls that represent the age and culture of our kids when they truly realize they are different. My heart was so full last night that I couldn't write.  But I simply MUST showcase these lovelies!!
I "found" these dolls thanks to my dear bloggy friend, Anna, the Chunky Chicken's mama, yesterday.  I also confess that one has already been ordered for Elise.  I now have to wait until it comes AND then I have to wait until I have a good excuse to give it to her. 
To try and narrow down one reason I am so excited about these dolls is laughable.  There are both girl and boy options.  They've made them so practical!  They will be bathe-able and they deliberately chose wigs that should stand up to vigorous "care". They've even managed to plan self-help/fine motor skills into their wardrobes...! I could absolutely gush compliments without end. 
I even find myself considering that maybe her sisters need one of their own to be friends with their American Girl dolls...promoting the beauty and differences that their sister has.
ANYWAY, PLEASE check out these fantastic dolls.  If you are on Facebook, you can watch their progress.!/DollsforDowns?fref=ts
And please share the "love" and tell others!!

(Oh, and in case you think I have an agenda?  I got bupkis for this "commercial", I don't know them, and it's just me spontaneously gushing!)