Good News About the Next Generation!!

I wanted to share a story tonight.  When most of the news I get about Down Syndrome is scary and about exclusion and genetics testing, I can sometimes get discouraged.  But I had this interchange on Facebook with a friend of mine.  Her daughter "S" works with my daughter, Elise at church.  She signed on to shadow Elise at a VBS a few years ago, and has stayed her faithful friend for the last 3 years.  And you can see by this conversation with her mother "H", just how faithful a friend.

"H:  Guess what just happened to 'S'

Me:  Not sure if I want to...is she okay???

H:  She got fired from AMC at the avenue. One of her fellow employees was making fun of a down syndrome girl and 'S' got loud and in her face and the manager escorted her out and fired her. I am boycotting the theatre.

Me:  :o

Can they do that????

Shouldn't that go the other way????????

H:  They said since she did it in front of guests they fired her.

Me:  I want the manager's name

H:  I told her how proud I am of her.  The other girl got fired too but I don't care.

Me:  I am proud of her too...she's who makes it better for my girl and others like her.

H:  That is what she said. So proud she said if I have to forgo my job to stop someone from being made fun of that is fine."

Her mother, "H", bragged on her on Facebook, saying:  "So proud of 'S' for getting fired tonight. Love it when my girl stands up for people who can't stand up for themselves. I am going to frame her separation notice. Way to go 'S'."

And, for the record, her firing slip listed the reason she was let go as "Substandard Performance".

This happened here locally, at The AMC movie theater at The Avenue Forsyth.  I don't know what their policies are.  I do not know how public "S" was.  I am not asking you to boycott the theater, but whatever calls or emails you feel led to make, I certainly won't discourage you.

When I messaged her to tell her how proud I was of her, I got this message from "S":

"Thank you Elise is very special to me and no one deserves to be made fun of whether they r a little different or not and I won't let anyone talk that way around me.. I love you guys too:)"

I am just so proud of "S", I had to brag on her.  She is a true friend to Elise, because she does not compartmentalize.  She does not allow things to happen to other people and throw up her hands with "I can't change someone's mind."  She stood up to protect and give dignity to someone who needed it.

Proud doesn't begin to give words to the emotion I have for "S"!   I am honored to know her, honored that she is my daughter's friend.  Thankful that she is our "next generation".  I am thankful to my friend "H" and her husband "N" for raising such a magnificent young woman.  I am thankful that God has kept her heart gentle, her sense of morals strong, and her voice confident.

Way to go, "S"!!!!!!!!!  LOVE YOU!!!!!!!

A Bumpy Start to 2012

Elise is still readjusting to her medication.  She's still a bit "off".  I will find her sucking her thumb, like she's going to ingest it.  I will tell her "no" over anything and it will send her over the emotional edge.  When we went to the neurologist, she suggested that it was that her thyroid finally gave up the ghost and she needed (more?!) meds.  I finally got the call back from her endocrinologist, and she said, "no" that really was unlikely that it was making an impact on her emotions without taking a toll on her weight or appetite.  And so we still don't have a clue what is causing the emotional melting.  It makes me exhausted.  I wish I had SOME kind of answer.  Any of you veteran mamas who have any ideas, PLEASE share. 

At the neuro's office, I did discover that she had gained 8 pounds and TWO WHOLE INCHES in height since June!!!!  If you don't know what a giant deal this is, let me just share that it typically takes her YEARS to get multiple inches, not 6 months.  With the increase in height, the weight is a freebie...but I am still a little concerned.  We are seriously considering joining the Y or our local pool to get her some exercise in, as she keens and howls if I make her go on a walk with me.  We single-handedly give ALL the neighborhood dogs a nervous breakdown.  I am sure our neighbors LOVE us.  Right now, we are just trying to get her well and we jump on the mini trampoline in the basement  or play on our playset for some exercise. 

Elise was scheduled to have her 6th (in 4 years) set of ear tubes put in today.  We cancelled yesterday thanks to our monthly bout with croup.  Anesthesia wouldn't touch her with a 10 foot pole.  The scheduling nurse said that she couldn't use her inhaler within 5 days of the surgery because it is a steroid.  My pediatrician said to ignore her for the next scheduling of the surgery.  So, I probably will.  Mostly because with a diagnosis of croup we cannot reschedule the surgery for 2 more weeks.  Which is great because it will probably coincide with her next round of croup.  *sigh*  That said, she tends to be crazy with fluid in her ears, PLUS she cannot get her ABR (a sedated hearing test) which therefore also delays her re-qualification for special education services...hopefully the fact that she is sick will figure in...and not just dates.  (Because otherwise we will be in a world of hurt.)

Christmas was nice.  I did manage to find a "Wolf Game" which is all Elise asked for for Christmas.  I got a nice Webkinz wolf, which qualified for a wolf game.  Yay!!  We kept the gifts pretty low key and got things that they needed because we opted for a family trip instead of more things nobody needs.  So "Christmas" will be making another appearance in February.  I am really excited over this!!  It's much more Elise's cup of tea anyway.  And memories are ALWAYS better than stuff!!  Right?

Holiday ADHD

Elise ran out of ADHD meds just in time for Christmas.  We had to cram a run to her neurologist's primary office smack in the middle of getting up and running, because they couldn't refill without a neurology follow-up.  Not awesome.  Not awesome-er?  Melty-Melty-Meltdowns in the floor.  And so we went.  Quite thankful for the awesome-er that is improving!

Between meds "resetting", her schedule being off with not being in school, and searching for desired fun...it's been a little bumpy around here.

We went unplugged this morning.  It was good.  But Elise couldn't quit cold turkey, and so she and Gabriel are giggling over America's Funniest Videos while the little girls nap.  We'll go back to trampolines, over-loving the cat, and possibly a playset run in a bit...but for now...we cave.  Peace on Earth and all that.  :)

More on actual Christmas later.

Don't Forget to Sign Up for Some Muchness!!

Don't forget to make sure you are entered for my two giveaways, comment here on the blog or the blog's Facebook page or send me an email at underwater9800@gmail.com enter before December 31st to win!!

Dancing with Max
and
A Certain Small Shepherd

I assure you, these books are inspirational and soothing to the soul!!  You'll want to win!!!

December's Christmas Giveaway #2: A Certain Small Shepherd

Depending on the entries on this one, I will giveaway one or two copies.  I haven't decided yet. 

This giveaway is:  A Certain Small Shepherd by Rebecca Caudill.  (A beloved, out-of-print book, I am considering asking Woodhouse to bring back.)

I LOVE this book.  Ironically, it was not Christmas until my mother read this book.  Now I can barely make it through this book "together", as it now falls to me to read it aloud.

This book tells the story of a young boy, Jamie, born with disabilities.  It is never clear what those are.  (When I got older, I tried to pin it down.  Because don't we all like clean little catagory boxes?  I narrowed it down to Cerebal Palsy, Autism, or Down Syndrome.  As the years pass, I am leaning more heavily toward the last two.)  ANYWAY, it tells of Jamie's birth in rural Appalacia, his struggles in school, his troubles making friends, his inability to communicate, and the out-growing frustrations and behaviour issues.

He is given the role of a shepherd in this year's Christmas play, after some fiasco involving him in the choir.  That way he could be involved, but it is a non-speaking part.

Then, on Christmas Eve, a black couple travels into town.  The woman, heavily pregnant.  The place being what it was, they were denied shelter despite snowy, stormy conditions.  His father offered the stable, but then moves them to the church to let them stay there for the night.  The couple had their baby that night.  The next day, Jamie's father brings his children over to the church to see the new family.

Jamie takes one look at the couple and their baby and rushed back home, put on his shepherd's costume and brings the entire contents of his Christmas stocking.  A dime and an orange.  For the first time he speaks, to who he believes is Mary and the Christ-child, and offers his gifts....

I've heard people complain about this book, because it is not "realistic" about disabilities.  But I want to say, the heart-struggle is realistic.  And, frankly, this is the miracle we all pray for our children.  And with the Christ-child involved, I'm ready to suspend a little "realism".

And, as the last giveaway, entries are open until December 31, 2011.  Entries are: comment here, comment on the Facebook page, or send me an email at underwater9800@gmail.com. 

"Merry Christmas! It's a Surprise!!"

At school, there is something called Elf Shelf.  Basically its a cheap "store" put on by the school so the kids can shop for their loved ones by themselves.

I was game this year and gave both Amelia and Elise $4 to shop with.  I figured they'd both come back for something for their siblings and something for themselves. 

Amelia came back with some of the creepy stress pens that you squeeze and their eye-balls pop way out.  A pink one and a brown one.  One for all the girls to share and one for the boys to share.  Charlotte got a pair of pink sunglasses, "because she can't use pens.  She colors on herself!"  Which is, indeed, true.  And Gabriel got a green cup, "for lacrosse, when he's thirsty!"

Elise bought a cheap barbie for Charlotte, "Cause Yaya, not share" (Amelia is bad about sharing Barbies, this is a well-known fact.)  She bought me bath fizzy balls, "For bath!"  She got bubbles for Amelia and Gabriel to "share".  And Ethan got a miniature hand mop.  "Cause Daddy like to clean."  :)

Bahahahahahaha!!!!

And that's all there is to be said about that.  

December's Giveaway #1: Dancing with Max

I got to go to a conference up in Chattanooga, put on by Signal Mountain Presbyterian Church.  It was the night before my birthday.  Emily Colson and her father, THE Charles Colson, was speaking on their book about raising her son , Max, who has autism.

You know how sometimes you find yourself realizing that you attended something for a single sentence?  That it was God's healing gift just for you?  Yeah, that was me that night.

My sentence was this:  Emily Colson and her father were discussing whether or not Max really understood his profession of faith, whether he understood the import of his statement...and his grandfather (Chuck Colson) went to (I believe) his pastor for insight.  His mentor looked at him and said, "The Holy Spirit speaks Max's language."

As I've mentioned before, that is my sole fear in raising a child with special needs, with diagnosed mental retardation.  Will she understand Christ enough to choose him for her Savior?  And in that single sentence, God literally took away my fears.  It's okay.  God knows the way to Elise's heart.  And that's all there is to it.  Period.

And so, I want to share this book with you.  I bawl everytime I read this book, for the depth of truth that I get to read...Dancing With Max by Emily Colson.

Please comment here on the blog, or on it's Facebook page, or send me an email at underwater9800@gmail.com.  Buy it or borrow it from the library, if you don't win it!!  And visit her Website and Blog for real world advice and for (again!) beautiful insights!!

Entries open until December 31, 2011!!