Monday, October 31, 2011

31 for 21: #31 Halloween

I know this sounds a little silly, but this year Elise grew up in a surprising way...

She changed her mind about what she wanted to be for Halloween.

Before, she didn't really care.  But this year, she chose what she wanted to be for Halloween according to one of her favorite movies.  She decided that she simply HAD to be Shrek the Ogre.  Of course, that he is not super popular right now which made finding a costume a little tricky...AND as she does not have typical physical proportions, finding one that fits is exceedingly tricky.  So, I did what any mama would do.  I made one happen.  I put together a reasonably similar outfit and crocheted a hat.


This turned out super, and as you can see by her proud modeling, she was very pleased.

Until she saw me put together her little sister's very girly costume of Tim Burton's Alice in Wonderland.

At this point, she decided that she needed to be more girly.

After a lot of deliberation, she decided that the perfect mesh was to be Fiona, Shrek's lovely Ogre Princess wife.  And so, 2 nights before, I put together a reasonable facsimilie of warrior Fiona from Shrek Forever After.  And I sewed a yarn wig on the ogre hat.


And she was thrilled.  And the best part?  She got some new ugg-like boots out of the deal!!  Which she will be wearing tomorrow to school.  She is stoked!!

And an added funny part?  Her little Twinkie, Charlotte, decided that she simply had to be a baby ogre.  So she signed on to be Shrek and Fiona's baby girl, Felicia.  So my little Tweedle-Dum and Tweedle-Dee went as a theme...which was ADORABLE!!!  I loved it!!!

31 for 21: #30 The 21 Snapshot

Last year, I stole an idea from a friend and I'm revisiting it again this year...I was too tired to think last night, so I'm putting up two posts today to make up for it! 

Last year my friend over at Sunflower Stories posted 21 facts about her boy...and has for several years...and I loved it so much I decided to do the same every year, whether or not I did the 31 for 21 again!!

HERE is last year's!

And for this year:

1)  Elise is in love with wolves and pigs again this year....but we've added a total obsession with horses, too!

2)  Her favorite movies and shows this year are:  Shrek, Wall-E, Up, Shaun the Sheep, Wallace and Gromit, Mr. Bean, iCarly, and anything involving Christmas...bizarrely enough, it seems her favorites are heavily weighted to shows that rely on physical expression rather than dialogue...

3)  We have seriously cut into her cracker habit...but she still lives for crackers and popcorn...

4)  She likes to wad herself up and sleep in a ball...

5)  She still loves to have her Care Bears all lined up...but she now will shake things up and make her bears or elephant wear Build-a-Bear t-shirts...Believe it or not, this is a serious growth and maturity indicator!  :)


6)  This year, we decided to play on her techie super abilities, and utilize all the apps that are working communication miracles, and ask for donations from her grandparents and a Kindle Fire was ordered for her birthday...  I would totally tell you what I think of it, but it doesn't come out until middle of November...so, I'll keep you updated!  ;)

7)  Elise is playing more independently more often.  Her American Girl, Kit, gets to have some serious adventures.  She loves to play with her plastic animal horde.  They have families, friends, and actually have conversations now!  She really is growing!

8)  She can read simple sentences on her own.  Her independence is growing with her vocabulary.

9)  With her growing ability to read on her own, she still enjoys to "read" books without pictures.  She pores over them, enchanted with the idea of words and their potential.

10)  Elise has enjoyed listening to the dramatized audio books this year.  This is HUGE people!  She is "getting" the story behind independent words, with no animation or pictures.

11)  This year Elise can actually ENJOY the pool!!  She spent the entire summer enjoying swimming!!!  Well, paddling around with her life-jacket...but for the past 8 years we've had nothing but screaming and wailing...so this new found actual enjoyment of the pool??  SO AWESOME!!!!

12)  She still despises to have her hair brushed.

13)  *See #11*  While she would still adore to never have her hair washed, she is willing to take a bath nowadays!!!  Hoorah!!

14)  She still loves to cook.  LOVES to cook.  With some of the diet changes, we have been successful in finding some food that she will eat other than pizza and crackers.  Can you BELIEVE she likes CURRY???   She enjoys to make rice bowls and is branching out to eat veggies if they are mixed into stuff.  She happily makes and eats pot pies, too.

15)  Second only to any pizza joint, Elise's favorite restaurant is Tin Drum.  (Which is Thai food!) 

16)  For as little as she can communicate verbally, she gets really tickled over some pretty complex humor...

17)  Elise will actually color in a coloring book!!  This is a pretty substantial growth!!  I'm excited about the independence and getting to see her imagination in color!!

18)  She will still do her angry goose step, if she is not pleased about something.  Lately, she is adding a head tilt with a little lizard tongue spit to her repertoire, to express her displeasure, in a more mature display of anger.  (Ha!  Seriously, it is a much more restrained expression this year!!)

19)  *See #18*  Maybe we'll get words next year to lip off over things she is angry about.  I cannot believe this is something I'm praying for...so weird.  Right now we are on the cusp as we occasionally will get a sound effect!  ;)

20)  She still pets our faces when she cuddles with us.  She pets her Care Bears when she snuggles them.  She is still very dependent on sensory input to calm herself.

21)  She still sucks her thumb as her drug of choice when she is tired or stressed...  But thankfully this year she has learned to wipe off her thumb before she touches others.  :)

My girlie is growing up!!!  Love her!!!

Saturday, October 29, 2011

31 for 21: #29 The People That You Meet

We went to a Halloween party tonight.  Everybody wore their Halloween shirts with undershirts with long sleeves...
#1 Because it was stinkin' COLD
#2  Because I SO did not want to figure out if I could wash the girls' costumes before Trick-or-Treating

That said, I met a lady today.  I didn't get her name...it was one of those conversations that you kinda join, and as 1/2 hour passes, you feel that you really missed the introduction part...

BUT ANYWAY, we got to talking and Elise came up and wiped her mouth on my hip....and the conversation moved to her, as it often does.  And this lady looks at me and says, "I have a story for you.  It's kinda funny.  And I'm pretty proud of it..."

I admit, I balked a little...many of these "funny stories" are weird and random, and often wouldn't be a story if the child starring in the story had been typical...and those annoy me.

But she goes on to tell me of an interchange that her son had had. 

Apparently, her son in high school had a break of sorts, where he gets water and a snack.  There was a young lady, very petite, who would peek around the corner, smiling at him.  She reminded him of his little sister.  This led to him smiling sweetly back and his asking her how she was doing.  Then she'd come around the corner and they'd talk a little.  He'd ask how she was doing.  What she was learning and doing in class.  What all she was up to.  It became a daily habit.

One day, a teacher pulled him aside.  He got a little concerned, and asked what was wrong.  She wanted to tell him, how very proud she was him.  He was perplexed.  "For what?"  She told him that the young lady he chatted with every day, called him HER "Mr. Number 67" (because he wore his football jersey once a week).  And that he had turned around her behavior in school.  She started doing her work in class, and improving tremendously, simply so she could tell him what she was doing.  She was proud to tell him of her accomplishments, because he genuinely cared.

The young lady that Mr. Number 67 took an interest in, has Downs.  She felt an importance was given to her and her accomplishments when a peer took interest in her.  This is something that even the best teachers cannot do...

When your kids wonder how treating someone with a disability matters.  THIS is why.  They can take away self-confidence or they can give it as a gift.

So, to Mr. Number 67's mother...Yes, be proud of your son.  This is a glimpse at his character.  This is indicative of the man he is becoming.  Thank you.

Friday, October 28, 2011

Bonus post doesn't count... :)

Interestingly on the heels of this morning's post...a friend posted this picture.

I'd just like to take this opportunity, to say crying is okay.  Angry is okay.  Calling friends and saying everything-is-not-okay, is okay.  Asking for help is okay. 

Strong is overrated.  Leaning on people who love you is underrated. 

I repeat this post...again...
Surprise Acceptence

AND I send you to this MOM-NOS's post:
ASD-PTSD, again...

I'm not saying everything is easy...just that we are not so different from other parents...

31 for 21: #28 What I Wish People Knew...Raw, Honest Truth

So, yesterday, the "assigned" 31 for 21 entry was "What is the one thing I wish people knew about Down Syndrome?"

I got distracted and forgot to check before I went scribbling yesterday...but...mine is a little multi-faceted...so maybe it's good people read me separated from those who actually followed the rules.

I wish people would realize that I'm just a normal parent.

There I said it!!!

I am not a freak that God decided to "bless" because "He knew I could handle it".  I'm a pretty regular parent.

About 80% of children with Downs are born to parents under 40 years of age.  That's a pretty high number.  We do not have "wisdom" from "the world" or our "long lives" to help us be brilliant parents.  We are actually trucking along side of our peers.

I HATE hearing the refrain, "Well, God knew I couldn't handle it!  You're so:"  strong, brave, smart, blah, blah, blah, awesome....whatever, go ahead and fill in the blank with some kind of stroking the ego complement....

Um.  Yeah, I've said on HERE before I had a temper and NO patience before I had Elise.  I am quirky and not a great planner.  I speak before I think.  I was verging on Spartan in emotions.  (I've mentioned on HERE before also, I'm an Aspie)  I don't respond well to emotions, I have a hard time figuring out what to say, or even how to read other people's.  I also had a REALLY hard time expressing emotions.  I don't like to be touched particularly.  And I hate to ask for HELP.

Can you see where I'm going here?  I am not a great candidate for a non-verbal, sensory spectrum, emotionally excessive, needy child.  AT ALL.

As a matter of fact, I am probably the antithesis of who would make a "good special needs parent".  You could even argue that I needed my kid to be the therapy for my own failures and issues.

Am I a pretty good parent?  I don't know.  I love my kids so much it hurts.  I pray for them.  I beg God to fill in the holes I KNOW I'm leaving in their needs.  I am quite sure that I am not  doing everything I probably should be.

Am I confident that God is growing me to meet needs I never thought I could?  ABSOLUTELY.  There is a great quote that floats about periodically, "God doesn't call the qualified, he qualifies the called."  I don't know who originated that quote, but I believe it is pretty sound.  I think it could be used in regards to parents with kids with special needs. 

My child with Downs is not a "sweet", "mild mannered", "loving" child.  She is loving.  She can be sweet.  She is far from mild-mannered.  I think a bloggy friend said it well:

"...People with Down syndrome are just that. They’re people. They’re not 'inspirations,' they’re not 'sweethearts,' they’re not 'little angels.' They can be some or all of those things, but so can you. Having an extra chromosome does not put you on the fast track to sainthood, nor does it strip you of your humanity. A person with Down syndrome is not their diagnosis.

They are individuals. They learn throughout their lives. They’re not 'adult children.' Adults with Down syndrome desire the same things typical adults do: independence, companionship, purpose in life. With appropriate supports, these things are more than possible for people with Down syndrome. They do not require paternalistic, pat-on-the-head treatment. They often require supports, yes, but they also require – and are deserving of – our respect as equals."

And guess what?  A parent of a child with special needs is the same.  We are just parents.  We are not saints.  We do not have super-powers.  We were not trained somehow to be prepared to be "The Uber-parents".  Many of us have typical children too, and have the same and even more pronounced struggles with our other children. (Read, my 5 year old never stops talking.  EVER.  Makes me nuts!)  We can be tired.  We can be annoyed.  We can tell you that we hate our child's disability.  We can tell you that we hate all the "extra" that our life now holds because of our child's disability.  Because it's true.  Other parents feel it some days, too.  With or without special needs. 

I HATE it when my friends "don't feel like they should/could complain"  because it's not "as bad as you have it".  Tired is tired.  Weary is weary.  Sick-of-it is sick-of-it.  The only thing that will hack me off, is if you are not fighting for your kid.  Their success or their happiness.  That is the ONLY thing I don't want to hear.  Because if you won't do it, who will?  Call in the troops.  Call in ME to have your back.  I will NEVER have too much on my plate to the point that I cannot or will not support you, My Friend.  Ever.

So, in conclusion.  If I was going to argue with you that my child with special needs is just like your kid, deep down?  I can argue the same for myself.  I am exactly like you.  I have the same fears.  I feel unqualified.  I feel in over my head.  I worry if I am "doing it right".  I worry if I am being a good friend.  I worry if I am listening to YOU!  So talk to me.  Let me talk to you.  I feel what you do.  Honest.

Thursday, October 27, 2011

31 for 21: #27 Hey, Are You Talking to Me?

No, seriously, is she talking to me? 

Yes, and she just told you a lot of things that's she been doing recently.  And is expecting you to answer, now...really.

*SIGH*

It is interesting that I friend of mine should decide to 'fess up about her biggest darkest fears today over at Chronicles of Ellie Bellie Bear.

It is very similar to the fears that have been growing over here.  In a nutshell, she is worried that her Bear won't ever talk and it will shrink her future. 

Um, Yuh.  Feeling you, Anna.

My advice that I posted up in response, was this:
"Talk about everything. Be your own life narrator. Until it makes you bonkers. Elise didn't even start babbling until she was 3, or attempt words until she was 4 and 5...she's still super delayed, but has progressed terrifically over the last 3 years.... Trust me, I SO understand!!!!!"

When Elise was little, I read an article talking about the hypothetical Einstein Syndrome.  It sounded like good advice.  I felt encouraged and decided to act on the theory...within reason.  I believed with reasonable intervention, my child would be able to hang on by her fingernails and wouldn't get too far behind, despite her diagnosis.  That if I believed she could do it and worked with her tirelessly, she could.

Fast forward a few years.  Despite intense, consistent intervention, therapies, and LOTS of parental involvement...she was getting more steadily behind her peers.  I was struggling with a lot of self-berating for not getting it right.  Did I not really believe it?  What was I doing wrong?  Then I realized that Elise had had a LOT of medical issues, so perhaps that was making an impact?  At the end of her chemo, and the beginning of being put into the school system part-time at age 3, I felt surely she would start her upward climb.

Again...not so much.

I decided that as long as I treated her as if she could do things, then she would continue to have input and opportunities, and I quit thinking about it...I totally pulled a Scarlett, "I shall think about that tomorrow!"

Again, fast forward some more...  I realized abruptly a few weeks ago, that my Magical Age Nine would not be the magical age I had hoped it would be.  That she was not talking and communicating as I had hoped she would be.  As a matter of fact, she was so very far behind, it is interfering with her ability to make and keep friends...and even play...despite the progress she has made.  We are still playing the Word Association Games that have become such the staple in our life.

And I started thinking forward to the same fears as my friend Anna is worrying over her little girl.  I started really wondering about Elise's general independence and communication ability.  I started concluding that our intervention, instead of helping her stay with her peers, was more just keeping her treading water...just keeping her from drifting backward in the flow of life...holding.

I find myself wondering again, if Elise will ever be independent.  I started pestering Ethan about my worries, and we concluded the same thing.  Keep on treating her like she she would improve, and don't start panicking, yet. 

I really don't know, what Elise's future will be.  I have decided to "worry about that tomorrow", too.  There is no need to borrow trouble.  Even God reminded me of that recently, when I was worrying if we were burying our heads in the sand.  Matthew 6:25-34...It was quite the gift, frankly!

Really...tell me this doesn't help you, too!

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. "  ~ Matthew 6:34


Wednesday, October 26, 2011

31 for 21: #26 Low Muscle Tone...or as I like to call it, Strong-as-an-Ox

Yeah.  This is a silly rant.

I would just like to warn any new-ish parents about a flaw in the "Low Muscle Tone" diagnosis.  It doesn't really mean, what you think it means.  It means that their muscles have too much "play".  The muscles are too loosely connecting the joints and until they are exercised a little, the babies have a hard time engaging them, because so much effort is required to engage the muscle in a movement.

As your baby grows and figures out how to engage, you will discover that the muscles themselves may actually be stronger than the average baby.  I don't know if this comes in as the difficulty to tell the brain to disengage, or what...but I have yet to meet a baby, child, or adult with Downs, who was fairly healthy, who wasn't as strong as 20 men.  Okay, a little exaggeration, but you get my point.

The first time I really came up on this, I was in college.  I taught swim lessons.  A mother hired me to "teach" her boy with Downs.  I have that in quotes, because, in her words, her "only real goal, is to help him panic less."  She was hoping that some regular, expected, interchange in the pool would help him overcome his fear of the water.  (As a mother with a similar child and similar goal with my own, I think it was just a hopeful thinking kind of trial.)

This job came when I was particularly fit...I was toying with doing a triathalon.  I was running, biking, swimming, and lifting weights regularly.  I was swimming constantly as a part of my job, on top of my recreational regime. 

When I worked with this boy, who was probably seven or eight-ish, I fought to keep his body in a proper position for swimming, and yet, keep him secure so he could calm down enough to attempt what I was asking him to do.  I cannot begin to tell you how badly this taxed my muscles.  I hurt so badly the day following his swim lessons, I had to take ibuprofen just to get out of bed and move.  No kidding.  It took all the days between his lessons to recover for the next one. 

I will tell you as a side note, I was successful.  At the end of the 8 weeks, 2 times a week, that little boy would willingly get in the pool and paddle while I was holding him.  And he actually enjoyed it!  I felt like I had won the lottery.  I was so PROUD!  :)  His mother was shocked and thrilled. 

I have several stories that are generally similar.  I have spoken to numerous mothers and fathers who have kids with Downs and we all giggle about our freakishly strong, low muscle tone kiddos...

SO.  If you find yourself wrestling with your child with Downs, telling yourself that you should TOTALLY be stronger than them, that they have low-muscle-tone-for-pity-sake!!  And that you find yourself a little worried how much longer that you can "take" them?  You are not alone.  But I really have yet to be able to explain it. 





Last Night's Fun




And, yes, this was totally the correct order.  Our pizza was taking a while to get there, so we opened presents while we waited! 

LOVE these pictures!!  They totally capture her!!!

Oh, and "AceMyHorse" (Very black and invisible in the pictures!) absolutely went to school with her today, along with popcicles to celebrate with her friends!

Tuesday, October 25, 2011

31 for 21: #25 The Stars in Your Eyes


Nine years ago.

In some ways, it seems so much longer. 
In some ways, it seems like yesterday.
In some ways, I am saddened that we are not further along...
In some ways, we are already so much further than I thought we'd be...

Nine years ago.  Tonight. The sky shifted. Ever so slightly.

You know how you look up at the sky in a city at the stars?  You only see a few of the brightest stars, and they are very far away.  When you look up at the stars in a suburban area, you see quite a few more stars, but they are still very far away.  When you are in a rural area, the stars shift to almost wrap around you.  They are mind-numbing in their numbers.  When you go to the ultimate in, say, North Dakota or Montana (think middle of nowhere!), the stars shift somehow in depth.  Not only do the numbers go up yet again, but there are levels of stars.  There are a few that are so close you could literally pluck them from your hair.  There are some that are so very far away, that you realize your own insignificance.  Distance becomes almost an inconsequential word...you wonder if they are bumping God's elbows...Your heart swells in the very beauty and magnitude of them.

I've murmured about Brushfield Spots before.  They are one of the defining characteristics of Down Syndrome.  Elise's are beautiful.  When she was little, I referred to them as "stars in her eyes".  They fill her irises.  There are big ones and tiny ones.  They sparkle.  They dance.  They ground me.  They inspire me.  They are stars in the fullest sense of the idea. 

When Elise was born, my sky shifted.  A few stars were captured in her glowing eyes.  They measure life.  They give depth to the simple.  They give distance to the oppression of fear.  They give radiance to the unexpected.  They glimmer with joy and love.  They shimmer with delight.  These stars have captured me.  These stars have set me free.

Happy Birthday, Elise!  I love you!  Thank you for sharing your stars!




Monday, October 24, 2011

31 for 21: #24 Twas the Night Before Elise's Birthday

Twas the Night before Elise's Birthday and I do not expect any sleeping tonight...No, I'm serious, I really don't!  There was scrabbling around at about 5am this morning and horses littered about on the floor...and I just about couldn't get Elise out of bed for school...I really think there was fun had at the wee hours this morning!!

I started the skipping down memory lane with pictures...and today I feel the need to revisit my thoughts, so I'm dragging you along with me...

Who my daughter made me...
http://superdownsy.blogspot.com/2010/10/31-for-21-12-patience.html

Elise's Birth Story:
http://superdownsy.blogspot.com/2010/10/31-for-21-25-my-girl.html

Really, there is nothing wrong!!
http://superdownsy.blogspot.com/2011/02/nothing-wrong.html

Bean Bag Baby!
http://superdownsy.blogspot.com/2010/10/31-for-21-22-bean-bag-baby.html

Not a Life Half Lived!!
http://superdownsy.blogspot.com/2010/10/31-for-21-2.html


I love my girl and frankly, I love that she was born in Down Syndrome Awareness month...I get to take the time and really reflect on her and her impact for her entire birthday month!  It is yet another suprise blessing....

Sunday, October 23, 2011

31 for 21: #23 Down Syndrome Look Alike

So my bloggy friend over at The Chronicles of Ellie Bellie Bear wrote a great blog on the search words "Down Syndrome Look Alike"...and I am SO laughing over my mental blip on it.  I have gotten those search words on this blog on more than one occasion, and for some reason I had it in my head that it meant doppleganger, like kids with Downs look like so-and-so or that so-and-so looked like they had Downs or something.  I totally don't know what I thought...just not that all kids with Downs looked like each other.  Because they SO don't.  They favor their families SO much more than each other, I think!!

And that brings up a thought of advice.

A lot families new to Down Syndrome struggle with seeing past that bonus chromosome.  That's all they see.  They see their newly adjusted lives through that chromosome.  They see their future through that chromosome.  They see their child through that chromosome like it separates them, somehow.

New parents, I encourage you to look past it.  It means so very little to your family bond.  Whatever that extra chromosome brings, it will not compromise their beauty or their family characteristics! Point out the ways your child looks like you! Do not hold back as if comparing them to your family members tells them that they look like they have Downs...it brings a closeness and pride in family similarities, it lessens the impact of that chromosome...you see less of the differences, and more of the sameness...

Friends and family, of new babies, point these out, yourselves!!  Tell them how beautiful the babies are!  The features you fear?  They are beautiful!!  The elfin eyes?  The tiny pixie noses?  The cute little tilted ears?  The sprite sized fingers?  You KNOW you love them!!  Right??  I don't care what they are evidence of, they are adorable!!  Enjoy them!!  Not everybody gets them, you know!! 


Saturday, October 22, 2011

31 for 21:#22 Skipping Down Memory Lane

Tuesday is Elise's 9th birthday.  And this week, I've been wandering up and down memory lane.  She found her baby picture book, and was pretty fascinated by her adorable self.  To put up a post tonight, I thought I'd let you wander the lane with me.  If you are a fan of the blog on Facebook, you've seen most of these...because I've had a couple of folks who wanted to know about how big she was at various ages.  I'd like to share these with you tonight, because some of these are some of my all time favorites...Enjoy!!


This was about the time she got kicked out of her child-care, for her health because she went into cardiac failure.  Elise was 3 months old and maybe 6 lbs.
This was the day we left for Cincinnati, OH for her open heart surgery.  4 months old and still less than 7 lbs.
Here we are at Ethan's graduation, Elise is 7 months old, and still about 7.5 or 8 pounds.


This is one of my favorite pictures of my Super Babies!  Elise is 9 months old and a whopping 10 pounds.  Gabriel is 4.

This is a Best Friends picture! 
(About the same time as the Super Babies photo.)



Again, about the same time.  Just one of my favorites...

She was on Chemo, kicking it in a giant crib, snuggling with Daddy!
(Elise is about 1 and 1/2 years here, still hanging at 15-16 lbs.)



Again, about 1 and 1/2 years, and 30 seconds alone with the Kleenex box!

On chemo with her beloved IV pony, given by a friend also fighting, down the hall!
(I think we were closer to the end of treatment, as her hair was coming out...)


Beautiful thing!  About 2 and 1/2 or 3 years old.



On her beloved horse, Gus! 
She's 4 years old here.

Kicking her boots, here at age 5.

Loving to cook at age 7 (almost 8)
Basking at the beach at 8
With her twinkie, Charlotte. 
This is a regular picture around here. 
They are besties.

31 for 21: #21 Blog Rolling

I love to read other blogs about special needs.  I feel like I'm talking to my peeps.  Keeps me sane.  There are many a dark of night that I have found cameraderie in a timely blog post!  So much so, I have a blog roll page dedicated to a list of awesome blogs...

http://superdownsy.blogspot.com/p/my-blog-roll-and-other-gold-star.html

If you want in, feel free to comment or comment on this post or on this blog's Facebook page, HERE.  (I can't change the Facebook page name, because I have "too many" fans...or so Facebook says.)

But make sure you check out some of these great blogs!  Enjoy!!

(And yes, totally taking the easy way out to catch up.  I confess.  :)  Crazy couple of days!!)

Thursday, October 20, 2011

31 for 21: #20 Disservice Announcement

Okay...I've been threatening to throw my peeps under the bus for a while...and while I have in passing, this is the first time I've dedicated a post to it.

My biggest pet peeve of parents of children with any special needs is the refusal to discipline.  They fall prey to the doting on a sickly child or they blame the cognitive delays and don't parent.

I don't care if you chose spanking, time outs, the removal of privileges, the giving of consequences, etc.  If you choose not to discourage naughty behavior or encourage proper behavior, you are doing your child a disservice.  Typical or non.

One of my best friends has a younger brother with special needs.  He is severely cognitively delayed.  She also has a 2nd little brother who is neuro-typical, on the high end of intellegence, in fact. 

The brother with delays was treated the same as my friend.  He was given consequences.  He was given rewards for good behavior.  He was encouraged to be as independent as possible.  He currently holds a full-time job with benefits.  And has for years.  He has friends and enjoys movies and has pursued a very impressive talent in wood-working.

Her other, neuro-typical, brother, was doted on for a multitude of reasons stemming, I suspect, from being a later in life baby...he has dodged virtually every consequence to every decision in his life.  Their parents have enabled this.  He is mid-twenties now, has no college degree, has never held a job, and continues make dreadful choices in successsion...

Also, interestingly, her brother with cognitive delays, dated a girl with a similar type of disability.  Her parents have done everything for her for her entire life.  She still cannot bathe herself.  She has never held a job.  They have made her 100% and completely dependent.  And she could have been so very much more.

I cannot tell you how frustrating it is when you meet someone with disabilities who is a pill.  Who is selfish and mean.  Or who is handicapped by their own parents.  It is like seeing people who squander money or talents...it becomes a tragedy.

It is these situations that influence the public's view of those with disabilities.  The consequences of these parents' decisions is a loss of opportunities for others with disabilities.

So do everyone a favor.  Push your kids to the most of their abilities.  Do not let them get away with bullying others or being selfish.  Expect their best.  It is the biggest favor you can do for them and all those they will come into contact with.  Now and in their future.

Wednesday, October 19, 2011

31 for 21: #19 Probably TMI

I have hesitated writing this one.  It seems like a too much information kind of post.  One that of all the posts I've made, I worry about Elise reading in 10 years and shrieking, "Oh, MoooOOOooom!!!!!"

But this is a unique low level panic in my life right now, and I am actually writing it, begging for advice and information.

Elise is telling me, on an hourly basis now, that she is 9 and wants her cake.  And she is getting taller and fluffier.  Less fat than thick...but looking like a growth spurt is in the offing for sure.

And every single doctor we go to now is asking me if she has breast buds or pubic hair...they are ALL anticipating puberty.  And that brings us to my panic.  If she cannot handle restroom situations without a little aid, what on EARTH are we going to do if she gets her period early????  I am currently praying fervently that she is a VERY late bloomer...so far we're safe.  But a little extra weight can escalate the speed with which she becomes a woman.

Okay.  The brass tacks are this: 
1)  She is not completely self-sufficient in the restroom.
2)  She is not communicative in her personal needs.
3)  She has massive sensory issues and hates things that touch her skin that are not the clothes of her choice.
4)  She hates dirty dishes and declines to touch dirty napkins....choosing to dump them in the floor.
5)  Her skin is crazy sensitive
6)  I am not ready for this.

SO.  Does anybody have any advice?  Books they can recommend?  For me or her or both?  Seriously, this is me begging.  PLEADING for direction.  Those coming behind me, I'll share whatever I get.  I promise.

Elise is independent enough to want to be independent.  But delayed enough that I'm genuinely scared.

Help.  Please.

Tuesday, October 18, 2011

31 for 21: #18 Growth: the good kind and the bad kind

After yesterday's prep post, I am sure you are all curious how today panned out.

I don't have any labs back yet...but I figure no news is good news.  If her CBC, cholesterol, thyroid, or anything else is off, but "normal" for Elise, I'll get the print-out in the mail.  If it has jumped enough for panic or medication, I'll get a call either within the first 24 hours or 4 days (the thyroid labs take a few days).  So....we're good so far.

As far as the doctor visits went, the knowledge that there were crackers in my bag, tamed her panic at not eating.  Granted, she begged for them literally every 10 minutes...but she didn't end up crying on the floor (like last time).

However, Elise had been put on her magic ADHD meds since we were there last, and everyone noticed that she'd grown up and was not being so reactionary and obstinate.  Every single nurse and doctor commented on her maturity this visit.  Yay!

To give her props and celebrate her good growth, in the past, she has thrown a screaming fit every single visit over: her pulse/ox finger check (just the little red light finger clip!!), the height measurement tape (still don't get the scary in that...), and the blood pressure cuff (have we ever gotten one??).  This time, we got an accurate reading on every single one.  My jaw about hit the floor.  The nurse was so shocked he forgot to record her height and we had to go back and do it again later for the doctors!  :)

She was cooperative with everything the doctors asked her to do or check.  She was golden.  She even did her homework and read books instead of suck her thumb and watch TV, which is her usual coping mechanism.



Then came labs.  Um.  There's were the bad kind of growth comes in.  Bigger.  Stronger.  It took me plus THREE nurses to get them this time.  They asked us to go get the labs done in the triage area...I declined and told them we needed at least 2 nurses to pull it off, and so we needed to stay in the exam room.  They acted very taken aback because she'd been so good with everything else.  The nurse replied with a very skeptical comment, that I "knew best"...but stuck around to watch.  They brought in the phlebotomist and the draw kit and Elise started screaming and kicking.  It took me to sit on her and pin her legs and one arm and shoulder.  It took one more nurse (the one who'd planned to watch) on her other shoulder and two more to stabilize her other arm and get the blood.  She still managed to kick one nurse and pinch the phlebotomist.  As soon as it was over though, she popped up and thanked them all for being done and waved them out of the room with blown kisses. 

On one hand, I am a little worried how many people it will take next time.  But after the spectacular about face with the triage tortures, I have a little hope she might grow up and cooperate.  Maybe.  Someday. 

The cherry on the top, was her behavior for the echo cardiogram (heart sonogram).  She laid there and talked a blue streak.  Only squeaking in disgust over the gel and sticker buttons for the wire leads, no nervous breakdown, per previous visits.

Ironically, the urine sample was the only fail.  She refused to go in a cup.  She screeched and retched.  I don't even know what that was about.  The only thing I can conclude is that she'd done all she could do...no more.  The doctors said it wasn't worth the fight, so we'll try again at the next 6 month visit.

The sunny side of today?  Elise did SO much better.  I didn't have to fight with her 2 little sisters.  And we don't have to do this for another six months.  If only I didn't have to find out that her ear tube has fallen out....and the fluid is back...  *sigh*  But we're good for now, and as soon as we get her dental visit (the 26th) over with nothing but smooth sailing...  October is really an exhausting month...

Of course, Chick-fil-a was lovely.  Elise loved sitting on her own side of the booth.  She got to play in the play area and got to choose which condiments she wanted to use.  She decided on one of everything.  It was monumental.  She was such a big girl.  So proud.  I sometimes forget it's the really little things that make the good memories.  And we both got our own waffle fries, usually we share.  Quite exotic.  Yum!  The healing power of fried potatoes.  Who knew?

Monday, October 17, 2011

31 for 21: #17 Soap and Hyperventilation

I smelled hospital soap at church this week.  I started getting tight in my chest...all the fight-or-flight feelings started checking in.  If I was short to you at any point on Sunday, I'd really like to apologize.  It wasn't you.

Hospital soap has a very distinct scent.  There are disinfectants in it, I am sure.  But it makes my brain go into overload.  As a matter of fact, it starred in its own post last year.  Read it HERE.

I don't care how many years pass...if your child had cancer, it lurks in the periphery.  Forever.  The moment your child vomits or coughs so hard it causes petichiae, you have to stop yourself from having a nervous breakdown.  The second your child gets sick and lethargic and there is no explanation (common in childhood) then its all you can do to keep from hyperventilating.  This goes for all successive children, too.  It doesn't matter if they had a clean bill of health from the oncology doctor the day before, the panic sets in.  Bruises from being a kid become a source of worry.  In a nutshell, you get a little gun-shy.

If you smell soap, you are drawn right back.  The sound of tape being pulled open becomes the equivalent of a gun-shot.  The driving up to the hospital is like going back home...but it will just about put you IN a home...for crazy people.  It's like being hugged to death by a python...the comfort of familiarity grows stifling...and then painful...It's really hard to put into words...so I am going to let you just follow that stream-of-consciousness instead of cleaning up, because it kinda makes sense...

Tomorrow Elise goes to her amazing oncology doctors for her 6 month visit.  AND about 4 other specialists...if it is going to be a day from hell, let's just knock them all out instead of spreading it out over 5 hellish days, right? 

Why I am sure it's going to be a terrible-horrible-no-good-very-bad-day?  Because Elise has fasting labs.  Yuh.  Clear now?  She fixates on eating.  So cut that off, and then add blood draws and sonogram gel...and it becomes a purgatory so dreadful I doubt Dante himself would argue....he'd probably add another circle.

Each year she gets stronger.  And harder to pinion for her blood draws.  It used to be me.  Then it was me tapped out, then it was me and one other nurse.  Now it's me and 2 nurses.  Low muscle tone!  HA!

Last visit was aw.ful. I snapped this picture on a whim.  It pretty much sums up her attitude.

Tomorrow, however, I will be short a couple of extra hungry, snarky, kids.  My mother is being gracious to watch Elise's sibs so it will only cause a throbbing headache, and not an anuerism.  I am incredibly thankful.  You have no idea.

And as always, we will diverge from our current diet choices and drown our sorrows in Chik-fil-a on our way home.  And all will be forgiven until the next 6 months visit.

If you have a second, a prayer for tomorrow would be appreciated.






Sunday, October 16, 2011

31 for 21: #16 Fair's Fair

Our country fair has served to be a surprise source of angst over the last few years. 

It was my first public slap that my child wasn't "normal".  It also served as a healing of that very slap.  And gave me hope.  This year has become no exception. 

Today we went for the last day of the fair.  Because we had promised.  It's in the middle of the town, so we've passed it no less than 25 times since it set up.  They've been begging since the sky buckets went up.  Last year was such a lovely hit, they couldn't wait for the fun to begin this year.

The story for last year is HERE.

This year, the healing continues.  This year, Elise proved that some of her impulsiveness is coming under control such that she can participate in some rides that I would have NEVER considered for her in years past.  She was too tall for her beloved Nemo ride...she was exceedingly disappointed...but she handled that disappointment with far more grace than I had reason to expect.

Then, we were able to trust her on the Sky Swings...not to freak out and throw herself out of them.  Which trust me, is HUGE.  Mind you, WE were still strung out, but SHE did great!! 

Then, she got to bask in the joy of the bungie trampoline.  With ALL of us.  The possibility of equal, joint "normal" enjoyment is within sight again.  For QUITE a few years, I wasn't hopeful.  I really wasn't.

Do I think we will ever be empty nesters?  Eh.  Who knows.  Do I have confidence that there will be a lot of joy and fun in our future?  Absolutely.

And I can hardly wait.

Saturday, October 15, 2011

31 for 21: #15 What do I tell my kid? (part 2)

Yes, it was supposed to be singular "kid" today.  Why was yesterday's post timely for me
Because Amelia is asking.  She is becoming hyper aware of "categories".  She started kindergarten this year.  And, sadly, what was "normal" before, is not as normal now.

Amelia has been refusing to play with Elise.  Not every day.  But more often than I'd like.  I don't push it.  They are 4 years apart after all.  But sometimes I admit to "setting up" a play date.  Initiate a mutually enjoyed group of toys or movie...and make sure it reminds Amelia about what they used to like to do.  Remind her that it's still normal and fun.

When there are people over, friends, cousins, acquaintances, Amelia tends to be even more exclusive.  Especially if the kids involved are uncomfortable with or tend to avoid Elise.  I try to push it a little bit.  I always make sure that Elise gets a little treat.  Her choice of a movie, toy, or snack, so she has a comfort item in place to be supportive, and something that might lure in the other kids.  Something that might make it more desirable to make the effort.  I wish I didn't feel like I had to.  I often wonder if I am doing right.

I've had to reprimand Amelia publicly for ways she has chosen to treat her sister.  But she does love Elise.  She has NO desire to have her own room.  She loves sharing with Elise.  She loves Elise.  She's just sorting things out.

Amelia has started to correct Elise's mis-spoken words.  She gets frustrated with her sister.  She asks me "Why can't she say ____?!"  I remind her that everyone is different and has different strengths.  Elise struggles with some words.  She will often return with, "But she's older, and I can say it!"  I have reminded her that Elise can read words and sounds that she cannot.  She then whines about how she's not as smart as Elise....and I remind her that we all have strengths and weaknesses.  Which is what we were talking about in the first place...I tell her that Elise's heart is littler than her body because of Down Syndrome, but even though her words are hard for her, her heart and mind still understand.  And that she must not forget that.

I know Amelia is processing what she knows and the differences that she is discovering.  I have always handled the situation (concerning special needs) the same way I handle questions about sex.  I answer the questions as they come.  I answer the questions as clearly and simplistically as I can. I let them ask the follow up questions...and so on.  I am always very honest and clear.

It worked well with Gabriel (our son) who is four years older than Elise.  He never was as hyper aware of Elise's differences.  He always just kind of lumped her and her disabilities as "her".  As a matter of fact, for a long time, he just thought girls were slower to grow and develop.  He was disappointed to learn that Amelia was going to be a girl (when I was pregnant) because girls "take FOREVER to talk!"  He has always been very understanding and loving with Elise.  He is very protective and has even gotten in fights (verbal shouting matches) over her.  He has eliminated friendship over opinions of Elise and even other kids at his school with special needs.  I admit, I am proud of that.

I am still feeling my way with Amelia.  I know honest and upfront is always best.  I know that positive reinforcement of her sweet and encouraging behaviors will beget more sweet behaviors.  I am holding to that pattern, trusting that she will eventually realize that "normal" is not the be all and end all in life.  I am trusting that when she is done categorizing she will understand that hearts come in all shapes and sizes.  And I will trust that she will comprehend just how stupendously big her sister's heart is.



Friday, October 14, 2011

31 for 21: #14 What do I tell my kids? (part 1)

Okay.  I plan to do another multi-part post.  I am totally cheating on today...but to be fair I think that the previous entries are quality enough to repost.
A friend sent me a message the other day: "...so, how do i become and advocate, proactive mother, and teach my children to accept children with disabilitys when i was not taught or even exposed to this until..."  a crisis.  (She doesn't deserve to have her laundry thrown in with mine...it's not my story.)

And, frankly, I am struggling to find answers for my own child.  Amelia is beginning to become aware of Elise's "not same-ness"...and I am preparing to answer as best I can...

Here are my first attempts to explain:
http://superdownsy.blogspot.com/2010/09/rant-1-but-why-do-you-need-diagnosis-to.html#comments

http://superdownsy.blogspot.com/2010/09/them-question-i-try-to-answer-1-what-if.html

I will revisit this subject soon...and explain why I am revisiting.  I promise.

Thursday, October 13, 2011

31 for 21: #13 Elise is CatMouse

I am SURE I have to have mentioned that Elise looooves Tom and Jerry.  I mean LOOOVES Tom and Jerry.  She calls it CatMouse.  All one word.  Said veryfast.  :)
Now, I love some shows, with a deep and abiding passion, but I can honestly say that while I have memorized some scripts and could say them in my sleep, I have never memorized a movie such that I could act out every physical nuance of a movie or show...perhaps a movement or two but not the whole dadgum thing.

Elise takes it to a whole new level.  She can act out ALL of the puppetry of most of the Baby Einsteins.  With her back to the TV.  She also can act out virtually all of the Tom and Jerry episodes that we have.  Again, with her back to the TV.  But my very favorite aspect?  That she can listen to the music of "Is You Is Or Is You Ain't My Baby", and act out the Tom and Jerry cartoon around it, with sound effects.  And it isn't even the same artist.  Just the same music.  It is a pleasure to watch her.  She laughs just remembering the funny gags in timing with the music.

It's stuff like this that gives me insight into just how complex her mind really is...tied up and kept captive behind her lack of speech...I pray that somehow she wrestles her way out...finds the words to enchant us all...  I know I certainly will be...am I am without the words, even.  :)

So, here is Tom and Jerry, performing Elise's favorite episode...while you watch, pretend that you have a pixie-eyed girl snickering in front of your screen mirroring it perfectly...and underscoring the sound effects.  I promise it will make it better!  It always does for me!!



Wednesday, October 12, 2011

31 for 21: #12 Baby Mine

Elise is home sick today.  So the stand-by favorite has been broken out.  Dumbo.  NOT my favorite.  Well, not until recently.  I didn't like Dumbo as a kid, it gave me ulcers and made me panic even THINKING of being taken from my mother.  I'm very serious.

It has been Elise's favorite movie since the very beginning.  She ADORES Dumbo.  I've seen it a billion-zillion times.  Not even kidding.  As I watched it the 40 millionth time, I realized it was a very parallel story to having a child with special needs.  The different-ness of her compared to her peers...and yet the very same-ness, too.  The shock of the surrounding community of the "funny" characteristics of my child, separating her from "normal".  Their indignant defense of their reactions.  Her trying to fit in.  The ostracism.  The sadness.  The vehement defense of my child by me, as a mother.  The eventual acceptance of my child by big-hearted people sprinkled throughout her life.  The hope of  rising her to success.  The praying for her triumph over her disabilities.

See what I'm saying??

So, you'd THINK I'd have registered the lyrics to "Baby Mine", Dumbo's Lullaby, right?  Yeah, today, being pinned down by my sickie babies, I registered it and boo-hoo-ed through it.  Filled my heart right to the top.

Baby Mine

"Baby mine, don't you cry
Baby mine, Dry your eyes
Rest your head close to my heart
Never to part, baby of mine

Little one, when you play
Don't you mind what they say
Let those eyes sparkle and shine
Never a tear, baby of mine

If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for the
right to hold you

From your head down to your toes
You're not much, goodness knows
But you're so precious to me
Sweet as can be, baby of mine

All of those people who scold you
What they'd give just for the
right to hold you

From your head down to your toes
You're not much, goodness knows
But you're so precious to me
Sweet as can be, baby of mine
Baby of mine"

Allison Krauss is one of my all-time favorite artists...imagine my pleasure to discover that she's covered "Baby Mine"!!  Enjoy!!!

Tuesday, October 11, 2011

31 for 21: #11 Hobbitses Meal Schedule

Okay...so 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.

Ha!!!

Monday, October 10, 2011

31 for 21: #10 Muchness Captured

I have a couple of good school pictures.  But most are proof of awkwardness and self-consciousness.  I think most people are that way.

I have some proof of Elise's Muchness.  Every single school picture of Elise since she was 3 and entered the school system has been fabulous and bursts with her personality...I only have the last 3 loaded up on digital...so these are the only ones I can share:



That's right.  And she is just as gorgeous in the previous 3 years!!  Who has spectacular school pictures????  Only those whose MUCHNESS is so strong and powerful that it can jump through a photo! 

Enjoy!  :)

Sunday, October 9, 2011

31 for 21: #9 - Things You Should Know (part 3)

This is number 3 in a multi part post...in answer to a friend's question of what "non-label parents" should know...(part 1, part 2)

What you should know about my child?

Down Syndrome is not that bad. 

Yes, I totally hear a gasp from some of you.

Is my life perfect? Um, that would be a big fat no.  But to be fair, is anyone's?  I've heard a couple of people lately talking about disabilities being a "natural part of life".  This is more true than I can even begin to say.  Can I do math like my sister-in-law?  Again, big fat no.  Do I have the "ability" to do exceedingly advanced math?  No.  My brain cannot deal with it.  My dyslexia finishes that off with a cherry on top.  That is just the beginning of my DIS-abilites.  Does that compromise my happiness?  Only if I am taking a Calculus 2 class.   I will never be a college math professor.  Should I mourn this?  If that was my childhood dream, perhaps...but it should not preclude my loving literature, mountain climbing, or writing...and thriving in those abilities.

My daughter may never be working for NASA, or be a brain surgeon, or have a career as a speech coach.  But she can do SO many other things that will bring her joy and happiness.  She has a future.  As much as anyone else.

Elise's best friend, Megan, may or may not reach adulthood.  Her disability is BRUTAL.  It slowly shuts down system after system in the body.  Her body is failing her on a cellular level.  Mitochondrial Disease is worse than I can even express.  It is aggressive.  It cannot be reversed.  It cannot be slowed.  You can only mediate what you can for as long as you can.  Elise has nothing but hope and opportunities.  Megan does not.  Megan and her family deserve sympathy and as many prayers and as much help as you can offer...

Do you see what I am saying?  Elise's life may not be as limitless as we pretend everyone else's is, but it has so very many opportunities.  (And, frankly, my life is not as limitless as parents tell their children their lives are either!)

Down Syndrome slows things a bit, just enough to appreciate and enjoy every step.  It doesn't take anything important from anyone's life.  It changes expectations, sure...but I blame society for the depression and sadness many parents experience.  (Even myself!)  Our society tells us to expect perfection, that we DESERVE perfection.  Even though perfection doesn't exist.

So, please do not pity us.  Treat us like everyone else.  Treat my daughter like every other child.  Pity without need is a poison...something that hurts and angers us on a very deep level....feel free to sympathize and/or empathize with us on bad days, but do not think that we do not have a very happy life.  Because we do.  Honest.

Saturday, October 8, 2011

31 for 21: #8 The Surprise Acceptance

Hello, my name is Tiffany.  My name is not Super Woman.

When I had a child with Down Syndrome, I knew almost immediately that I would be learning to accept a lot of changes that were about to go down in my life.  What I did NOT expect, was that I was going to have to accept that I could not "do everything".

I have talked before about how Elise gave me PATIENCE in mammoth supply...well, compared to before...  Today I need to talk to you about accepting help.

I am one of THOSE people that doesn't really like to delegate because I am sure to like how I do it better.  I prided myself in my independence, in my ability to pull off Herculean feats on my own.  Elise brought me an ability and need to ask for help.  She gave me the willingness to accept someone else's support.  And  more than that, she made the dependence on others beautiful.  I hate to ask anyone for anything.  I hate to look "weak".  But I have learned that some people NEED to give.  That it is their spiritual gift.  And when you learn to accept, you give and receive and it is super-sized blessing.  It's actually better than you imagined.  And believe it or not, it is a gift to them, too!  It was a hard to truth to comprehend for me.

A friend of mine offered this idea for today's blog (actually Lynn is the crazy brains behind my banner!).  And I was somewhat surprised by the subject idea.  Because, frankly, I thought I was the only one who had learned this lesson...it was pretty cool...it is one of those thoughts that skitters through your mind and you really think you'll remember it for later, and then you don't...

Elise is a blessing.  And if I don't share her and her needs, I am hogging her and her gifts.  If I reach out to others, I'm sharing all I've learned and am learning about and from my child with others.

Elise has stretched and grown several family members.  She has changed and given insight to some of my friends.  She has given a mission to a few wandering youth, searching for a spot and calling.  She has certainly grown me, made me a better and more patient person in so many areas of life.  She has been a living miracle that others have gotten to witness.  A miracle that strengthens others' faith, hope, and perseverance.  I am greedy if I am not willing to share...a truth that I am finally learning.

Friday, October 7, 2011

31 for 21: #7 - Legitimate Paranoia

Okay.  I grew up in the 80's where nothing bad ever happened, right?  It was all My Little Pony and Care Bears....Or not. 

When I was in kindergarten/1st grade, a little boy was taken from the front of our local YMCA.  He was found much later.  Mutilated and with signs of sexual abuse.  His older sister was in my first grade class.

About three years later, some nasty man exposed himself to me in the children's book section of Big Lots.

Jump forward 15 years.  My son is beautiful.  Like, I was afraid to have girls after him, because it seemed unfair.  But I still cannot wipe the media surrounding that little boy from my memory...and my paranoia was huge and only gets bigger as I am forced to let my son have his independence....the world is never as safe as we think it is.  I pray for him and make as many protective efforts around him as possible.

Then, a little over a year ago, one of my favorite bloggers revealed that her son was sexually abused in her church (Breaking the Silence).  It knocked the breath from me.  My soul was scorched with pain for her and her son.

One guess how that affected my pre-standing paranoia?  Yeah.  Only underscored it.  And it took the confidenced that church was untouched by the ugliness of the world.  I was terrified to learn that 1 in 4 children will be sexually abused.

Why am I telling you all this awful stuff?  Because children with developmental disabilites are even more at risk than the general population.  90% of people with developmental disabilities will be victim to sexual abuse in their lifetime.  50% will be subjected to it 10 or more times.

A Facebook friend is waiting for justice for her daughter, who was sexually assaulted as an adult.  She has Downs.  She is not a nameless statistic to me.

Please, PLEASE pray for your children. (ALL of them, typical and non!!)  Be alert.  Make whatever safety precautions you can.  Educate them so they can protect themselves.  Watch for signals something has happened so you can fight for your loved one.  And if the awful should happen...FIGHT.  Fight for justice.  Fight for healing.


http://www.americanbar.org/publications/human_rights_magazine_home/irr_hr_winter00humanrights_petersilia.html

http://en.m.wikipedia.org/wiki/Sexual_abuse_of_people_with_developmental_disabilities

http://www.mass.gov/?pageID=dppcterminal&L=2&L0=Home&L1=Recognizing+Abuse+%26+Neglect&sid=Idppc&b=terminalcontent&f=recognizing_prevalence_of_violence&csid=Idppc

Abbe's Journey:
(and outgrowing ministry and education)

http://dollfamilyzone.blogspot.com/search/label/breaking%20the%20silence

Thursday, October 6, 2011

31 for 21: #6 - Things You Should Know (part 2)

This is a part of yesterday's POST

Part 2: Something you should know about my child with Downs?

Sometimes she man-handles you so you can experience fun.

Elise has a history of physicality.  Sometimes negative.  She has really struggled with impulse control in conjunction with her ADHD.  She acts out in frustration.  She acts out in anger.  She acts out in "OH-I-should-touch-that!" abruptness. 

But sometimes, she thinks you're missing out.  There are times where she will physically move you into an experience she thinks you should have.  This is not out of mean-ness.  This is out of a genuine desire that you have some fun.

She is currently doing GREAT in school.  The ADHD impulse is reigned in by our LAST line of defense medication. (WHEW!)  And after last year (HERE and HERE), you have no idea how very thankful I am!!!  But now she is have a little difficulty on the play ground.  Because she cannot get her thoughts out in words properly, she is manipulating friends on to swings, slides, and monkey bars.  They don't really want to be pushed onto playground equipment, but she doesn't know how to say, "Come on!  Let's go play on ______!"  Or, "This is really fun!!  Come try this!!"

So.  Sometimes, she just wants you to have fun.  So if you you see her forcing someone onto a play set, maybe ask her why, instead of slapping her down, physically or emotionally.  "Elise do you want So-and-So to play with you on ____?  Why don't you ask them to 'come on?'"  Give her easy words to use...she'll try.  I promise.

P.S.
Oh, and you and your child can totally say, "No."  Just because she has disabilities doesn't mean she gets to be a bully any more than she should get bullied.  And I'm not the only one who thinks so.  See HERE

Wednesday, October 5, 2011

31 for 21: #5 - Things That You Should Know (part 1)

I was tired today and I was having a hard time starting a new post, so I begged on Facebook for an idea...My friend G suggested this: "As a non-label (nothing is "normal") parent - how 'bout relating with downs children. One thing we should or shouldn't do ...."

This actually started a flood in my brain, so it will wind up in multiple parts, I think...

Part One:  Something you should know about my child with Downs? 

DO NOT underestimate her (or any of her chromosomally enhanced peers!).  Even if Elise has VERY low verbal skills it does not mean she doesn't know an easy mark when she sees them.  I wrote a little about this last year HERE.  And I mentioned in passing, at the beginning of the school year, that Elise was hazing her new para-pro...seeing if she would stand strong or if she was a "waffler".  Elise will respect you if you stand strong, if you waffle, even once, you will be pushed on that issue again, over and over.

Elise has a 2-3 year old vocabulary.  The internal workings of her mind are significantly higher than that.  But a lot of people assume that because she is so low in one area, she is in all.  Some of her friends are on level in Speech, but struggle physically.  Some folks with Downs function extremely highly, but their pronunciation clouds people's view of them.

Please treat her (and all of her peers) the same as anyone her age, until you are told of a deficit or you run up against one.  DO NOT assume that she cannot understand.  DO NOT assume that she cannot be reasoned with.  DO NOT assume that she cannot be disciplined.  DO NOT assume that she won't get her feelings hurt.  DO NOT ignore her.  DO NOT teach your children to ignore her or take advantage of her.

Please speak to her as neuro-typical child.  PLEASE do not speak more loudly to her as if your loudness will make her speech stronger or your meaning more clear.

I can tell you story after story from friends, my mother (a school diagnostician), my sister-in-law (who did job placements for adults with disabilities), the kids I taught in my previous life/career as a teacher, and my own child...of children who decided that they were done taking tests/doing work and started answering questions wrong, ON PURPOSE, so they could quit.  Stories of children and adults who could vomit at will to get out of work and tests.  Stories of children and adults who would fake limps, heachaches, and various ailments to get out of activities that didn't like for a myriad of reasons...

These are "normal people" who know how to get what they want...and make you believe what they want you to.  This is not a subclass of humans that are foreign to you.  They are JUST LIKE YOU.  Sometimes they are just on a different time-line.  But that doesn't mean they don't think like you, feel like you, and want the same things as you do.  So treat them the way you want to be treated.  The Golden Rule still applies.  Seriously.

Tuesday, October 4, 2011

31 for 21: #4 The Characteristics or Magnetic Magic?

Okay...so if you want to know the physical characteristics of Downs, you can totally google it. It's being listed in soo many people's educational blogs, I feel that I have no business doing it...Elise will be 9 in a couple of weeks (actually, according to her, she is nine ALREADY!) and so if you know us, you've seen most of the characteristics...

I frankly like the physical traits. It makes it an easier life for her. It "explains" for her why she does not behave like other children her size, why she doesn't sound like everyone else, and why I tend to hold her hand over her little sister when we are out (because of poor impulse control, not favoritism!)

I liked them when she was little, for me. It helped me identify others in "The Club"...there was no awkward wondering, just immediate comradeship.

When Elise was tiny, we had a couple of things happen that made me question if it was deeper than physical traits, in some situations...

You know how there are stories of mystical twin bonds? Sensing the other's thoughts, pain, experiences? I don't know if these are myths or fact... (..Hmmmm...I really should harass my sister-in-law, she is a twin!) But we've all heard them. I am beginning to wonder if there is a deeper connection between people with Downs... Last year, a friend positively gave me chills with THIS story.

Elise adores her daughter, Gabi. Elise likes babies in general, and likes to peek and them and touch them, but she is enchanted by babies with Downs. She will seek them out like a heat seeking rocket and exclaim over how cute they are for hours...

When Elise was just a little baby, we attended a church that was VERY friendly to people with special needs. They had a fantastic ministry to young people and adults. One day, when we were at the church service, there was a young lady who noticed us, and slowly inched from pew to pew, from halfway across the church. She kept peeking back at us and sneaking...Eventually, she managed to sit at the end of our pew and started smiling at us. Looking over and beaming. After a few minutes, she scooched closer. And finally she was snuggled up to Elise's baby bucket seat. She looked at us and cooed "Your baby is SO CUTE!!!" She pet her feet and fingers. Then whispered, with a giant grin, "She's just.like.ME!" It gave me chills. I don't know how she could have known from as far away as she was. It's like there was a supernatural pull. She rarely missed a Sunday after that to check on Elise and tell us how beautiful she was!

There was also a young man with Downs who acted as an usher who would not let us pass unless we woke Elise up and let him smile at her.

We've seen the magnetic pull in action. Over and over. It never fails to awe me. I really think the bonus 21st's, shout to each other!! I really do! I'm telling you, it's magic!

Monday, October 3, 2011

31 for 21: #3 So Smart

So, this year's progress is another post altogether...but this is a great Elise story!

Amelia, her 5 year old little sister, started kindergarten this year. Elise has been quick to jump in on all of Amelia's homework. Telling numbers, counting, reading, letters, etc, quick before Amelia can figure it out...

Amelia, being the dramatic emoticon that she is, started weeping theatrically one day and shrieked out "Elise is smarter than me!!! She knows everything and I know nothing!! I am not smart and I am worthless!!"

I, being the good mommy that I am, stepped in quickly, and said, "It doesn't have anything at all to do with being smart or not!! Elise has had 4 years of practice!!! You will get more practice and you will know everything too!!"

Elise leans in to Amelia, and smiles sweetly...and whispers, "No, Elise smart." Then pulls away and laughs riotously!!

Amelia sobs louder and with more woe-is-me flagellation....

I, of course, do the good mommy thing and reassure Amelia and reprimand Elise for making Amelia worry....but I gotta say, it was FUNNY!!! The words, the delivery, the timing, and effect...it was a spectacular dig!!!!