Thursday, October 31, 2013

31 for 21: Mix Tape

Fluff for today...I am totally telling my age, here, but if Elise were to make a mix tape...these would be her Top Eleven:



1.  Switchfoot:  Meant To Live

2.  Despicable Me 2: Pharrell: Just a Cloud Away

3.  Brad Paisley: I'll Take You Back

4.  Chipmunks:  That's How We Roll

5.  KT Tunstall:  Black Horse in a Cherry Tree

6.  Austin Powers:  Daddy Wasn't There
     (The irony is her Daddy played this for her and she thinks it's hysterical!)

7.  Enchanted:  Amy Adams:  Happy Working Song

8.  Northpoint Kids:  Your Love For Me

http://www.youtube.com/v/P7ZWweFvR3k?version=3&autohide=1&feature=share&autoplay=1&autohide=1&attribution_tag=VEX_CexxnzxhgX3hwQnnSQ

9.  Shrek:  Smash Mouth:  I'm a Believer

10.  Heart:  Barracuda
(Another Gift by way of Shrek)

11.  Queen and the Muppets:  Bohemian Rhapsody

And one to grow on:

 
 
(And yes, these are all on her iPod shuffle!)
 

Tuesday, October 29, 2013

31 for 21: Elevensies

 
Once upon a time...Eleven years ago...There was a teeny tiny baby that showed up, unexpectedly, and rocked my world.  Unlike her giant older brother, she didn't even make 6 lbs at birth.  And so the coming home outfit did not fit.  As a matter of fact, I could knot the legs of every jammie I had gotten and she could kick freely like a sleep sack.
 
My mother-in-law, actually had to go to Target and buy a doll outfit, that could hold us over until we could get our hands on some preemie jammies.  She was still swimming in it, at just under 5 and 1/2 pounds. 
 
Here she is on the day she came home in it.  I put her in the cradle with the doll I bought for her almost as soon as I learned that she would be a girl.  And snapped one single picture. 
 
Now, eleven years later, I cannot begin to tell you how she has changed things...
 
At the risk of beating a birthday horse, may I revisit the Lego idea?  I hit on the bricks of possibilities at the beginning of the month, right?  Having a typical child, is like having a Lego set.  Something can always go wrong and you may get hung up and frustrated in the directions, a block here and there may get misplaced, but you have an idea of how it is supposed to turn out.  If you have a child that is a little a-typical, you have variants on a theme.  It is maybe one of the alternate plans.
 
 
 
When you get a kid that has completely full blown special needs, it's like you got a tupperware full of loose Legos, no directions, and you are trying to build what you see everyone else is building.  Some parents are successful, they build a replica that looks strikingly the same; some give up and just carry around the box of blocks; the really brave ones throw the idea to the wind, and build something completely different allowing the pieces they have determine the creation.
 
Elise is my full box of loose Legos.  I tried really hard for 8 years to build what everyone else was building.  Then, for 2.5 years, I tried to make one of the directions sanctioned alternatives.  For the last 6 months, I've pretty much dumped out the box in my living room and let the pieces offer up the suggestions.  It's been maybe the last month or so, since I realized that that is was I am doing.
 
Kids who successfully build their set perfectly are supremely proud of their accomplishment.  Kids who build variations are thrilled at the new and unique options they have executed.  Have you ever seen a child build something from their imagination??  Have you ever seen anything but pride and joy?

 
No.  You haven't.  And you never will.  Because it is always the best thing ever, because it is born of joy and love.
 
Elise was full of a broken future, a set missing important components...until I started looking at the box of pieces as the most open-ended opportunity ever...and so, I am starting to scrabble through the pieces to sort out her strengths and help her build her very best and awesomest Self.
 
I have no idea what will be built by her next birthday.  But I know that I will be insanely proud.  And I will drown you in pictures.

I leave you with a collage of Elise showing off her birth dolly, in the clothes she wore home.  As thrilled with her life as anyone has a right to be.
 
Happy Birthday, my girl!  You are still full of possibilities.  And I can't wait to see what you build with them!!!
 
Bonus!  Previous Birthday Thoughts:
 

Thursday, October 24, 2013

31 for 21: Randomness

Yeah.  I know.  I haven't written because of a stupid reason.  I've been obsessing about a post that is complete in my head, but I cannot find the jumping off place link...that HAS to be there for the thing to work.  Sorry.  Fingers crossed that I can find it before I go nuts.

As a "forgive me please gift", here is some fluff:

I linked up "What Does the Fox Say" and Elise's funny reaction.  And I told you about this amazingly awesome running group on Facebook?  Elise's runner, April, is fantastic and linked this up for her: 

She giggled until she couldn't catch her breath.  And I found her giggling randomly all night, and if I asked her, she told me, "Fox say 'WOW'!!!" and would commence chuckling again.

(By the way, the running group is in need of kids/people to run for.  They have exploded with runners and they have not gotten near the response of "runnees".  I have found a sweet friend in April, and I know others have found the same in their kids' runners.  You don't need a "big" disability to get a runner, you just need to have needs that are unique and could benefit from a public education of how it affects your day to day life.)

Also, this video went viral a few years ago.


And frankly, the kid singing creeps me out.  Completely.  I am terribly sorry.  I appreciate the sentiment, but yeah.

So, I offer you this...with the same sentiments.

"When I see your face
There's not a thing that I would change
'Cause you're amazing
Just the way you are
And when you smile
The whole world stops and stares for awhile
'Cause girl, you're amazing
Just the way you are"
 
Elise turns 11 tomorrow.  I cannot tell you how weird that is to write.  She is so old.  And yet not.  Side by side.  Yet neither.  I don't remember feeling so oddly when Gabriel turned 11.  I just felt the speed.  I didn't feel his youth...I just felt the movement of time, such that my hair was ruffled....literally.
 
Time.  She is a mean mistress.  Just sayin'

Saturday, October 19, 2013

31 for 21: The Fox Does NOT Howl!!

This has gone rather viral...and it's clever as all get out.  I was hyper amused...and yet was wisely disinclined to let my kids watch it...because then the begging...OH!  The begging!!

But I finally succumbed to the temptation of letting Elise watch "The Fox" by Ylvis, because she loves The Wolf Song, you know, Sam the Sham & the Pharaohs- Lil' Red Riding Hood?  I cannot stress LOVES enough...


I can't tell if she likes the song or the sound effects...  She was completely obsessed with wolves for 2-3 years, anyhow....again, I am not sure if she likes them or *feels* her brothers and sisters as they converse in howls:


She talks about them, draws them, threatens to have wolves bite you if she doesn't want to change clothes or do homework, pretends to be them, reads about them, plays computer games about them.  It's a very well-rounded obsession.

So, you understand why I totally had to share this with her:

Really, I had no choice.  At all.  I swear.

I asked her if she thought that they howled like a wolf?  She looked horrified!!  And waggled her body at me, telling me that "WOLVES howled!!  NOT foxes!!!  ACH!!!  WHAT????"  The scorn was palpable. 

And then she asked to watch it again!!  I couldn't say no.




Friday, October 18, 2013

31 for 21: "Non-Verbal"...or Not

Should I even put the "31 for 21" now?  I mean, if I am honest, I am already working more like 29 for 21...  *sigh*

ANYWAY,

Why do I refer to Elise as "non-verbal"?

I mean, to be honest, she has a reasonably extensive vocabulary.  She CERTAINLY doesn't hesitate to speak her mind.  So bare-bones technically, she is not non-verbal.

But.  Between her lack of age-appropriate language, her lack of clarity, and her weird pronunciation issues, she is desperately difficult to understand.

Take for example, instead of the typical mispronunciation of "W" for "R", she subs in "L".  The "bloun house" instead of the "brown house" (her identification of where we live, we moved from "blue house").  Or more interestingly, "HLella" instead of "Netta" (her grandmother).  She uses a "Gah" followed by a complex tongue roll instead of "Grandmama"(her other grandmother).  And the list is pretty extended for the subs, drops, and rearrangement and "pig latin"-ing of sounds.  Some of this is based on the low muscle tone thanks to the Down Syndrome, but much of it is more a processing issue, than a physiological one.  Her brain is not processing sounds in or out properly.

She has a vocabulary of a 2-3 year old.  (She'll be 11 in a week.) 

She has happily added to her ability to offer different one word options, if you don't understand one, she'll offer synonyms or subject sibling-ish words or sign or enactment gestures, hoping to queue in a useful piece of information that will help you to make sense of her subject.  I have affectionately referred to her new speech crutch as "the bastard child of Taboo and Charades."

She literally did not speech until she was almost 2.  Like at all.

This is the area of life that is functionally the lowest. 

If you don't know her, it is unlikely that you will be able to figure out ANY of what she is saying unless you know a toddler and even then it will be minimal.

If you do know her, it is unlikely that you will be able to understand her, unless you know her subject matter going in, or you are willing to play her speech game. 

SO.  I will explain her to friends or those in the medical profession.  I usually gauge how much to volunteer or just call it non-verbal to avoid the looks of panic that surge when someone tries to talk to her and they understand nothing. 

It's kind of like telling someone that this is English, and then sitting back:
 


It's kind of mean, and not particularly helpful.

So.  Consider that Elise has something to say.  But know you will have to meet her on her own terms and in her own language to discover her world.  It's seriously fun.

Elise has renamed one of her para-pro's at school...and it has stuck, and not just for Elise.  The entire class and many others throughout the school refers to her as such and she loves it!  Ms. Gonzalez is "Goddess".  Wouldn't you accept that name change??  Isn't it worth the upgrade to understand her??  :)



31 for 21: Circling the Wagons

There is so much talk of awareness...but seriously, sometimes you have to circle the wagons for something as soon as you understand.  Today, I am sharing two of these things.  I don't really care if it's not Down Syndrome. 

(credit)

Sometimes one thing leads to a whole world...  when my daughter was born, I learned about a parallel universe.  Now, mind you, I worked in the inclusion education world.  I knew many of the battles that happened in the hours of school, I was engaged, and I fought, in principle and in fact...but while those are important battles, the bigger and more overwhelming battle is every day life.

I read this and was seriously ready to go to war.  I mean, for serious, right then:
http://liferearranged.com/2013/09/coaches-columnists-epilepsy-facts/

And then this week, Jeanett gave us a way to fight.  1 in 26 people are affected by epilepsy.  We can donate for research, awareness, and education; so it isn't full of the stigma that this ignoramus would lead us to believe.  And I am pleased to report, that, boy howdy, is Team Jilly fighting!!  Please join us!
http://liferearranged.com/2013/10/our-roller-coaster-epilepsy/

Educate yourself:
http://liferearranged.com/category/epilepsy/


NOW, again, Elise's best friend is Megan.  She has Mitochondrial Disease.  This is one of the most brutal diseases I know, it takes your child from you.  Slowly, painfully, and sneakily.  And it terrifies me, hurts me, and makes me want to come alongside in a meaningful way.  I am proud to link you to one of my best friends who "got it" and wrote this within weeks of meeting Megan's mama, my friend Laura:  http://rixie4.blogspot.com/2013/09/actually-aware.html   

This is why "awareness" weeks, months, and whatever are so important.  Because sometimes you don't know to raise your voice, volunteer, donate, offer relief, and bring meals, if you don't know what is going on.

Wednesday, October 16, 2013

31 for 21: seeing our past, without medical complications...

If I love looking forward with The Ordinary Life of an Extraordinary Girl and Madness Modified (formerly Madness Ensues), then I love looking back into our past with none of the massive health complications...I am SO rooting for Ellie...

I watch her grow and become even more beautiful as the days pass...and see her battling the demons of ADHD and SPD...I pray over her...and I have never met her in real life...but I love her anyway...

One of Anna's most recent posts spoke to one of our greatest battles over the years the Bermuda Triangle of ADHD and SPD that Elise's best self also gets lost in: http://ellietheurer.blogspot.com/2013/10/frustrated-with-spd-and-adhd.html?spref=fb

I cannot begin to tell you how I hurt and felt it with her...

But then I also get to see the posts like this:  http://ellietheurer.blogspot.com/2013/10/happy-tears.html

Where you can see her totally winning!!!!

I hope with my whole being that her triumph is spectacular.  As I do with Elise...

We've GOT to root for each other...or we will drown in our own now...

And that is why I read other folk's blogs!!!





Tuesday, October 15, 2013

31 for 21: How Do You Like Them Bapples?!?!?!

 
Today is an exercise in rejoicing.  You probably won't get why this is a BIG FREAKING DEAL, but it absolutely is.

Last night the stars aligned, and meatloaf with extra ketchup was held hostage.  ELISE ATE APPLES!!  Granted it was like 2 eighth of an apple pieces, but STILL!!!  This is a culmination of EIGHT YEARS of Occupational and Speech therapies!!!!  This is a coup in proportions of Hannibal and the Elephants!!  Joshua and Jericho!!  MIRACULOUS, Y'all!!!!

With SPD, textures can cause a child to gag, choke, and generally freak out.  Apples have been on Elise's black list for...How old is she now?  She will sometimes eat cooked apples.  She will eat applesauce.  She will lick and occasionally taste them for Johnny Appleseed projects in school.  But she has never once willingly eaten an apple.  Last night, I wanted to try again...for the 33rd zillionth time...and so I attempted to eliminate as many factors as possible.  I cut it up.  I took off the skin.  She keened and groaned and growled.  I told her that she could have more meatloaf (her favorite) if she ate the apples.  She licked, shivered with disgust and scratched off some into a little bit of apple pulp on her finger which she licked off...she turned to me after it was clear that she HAD to try one.  "Cut?"  She wanted me to cut it into littler pieces.  I felt like I was making apples for dollhouse people by this point, but, sure...whatever.

AND SHE ATE THEM.  ALL!!


WOOOOOHOOOOOOOOOOOOOOO!!!!

Plus, isn't she cute??  Filthy, perhaps, but cute...  She notices that I am recording her about halfway and poses to smile, because she thinks I am taking a picture...  Plus, notice, her princess finger positioning!  *Sigh*

Rejoice with me!!!!  "How do you like them apples???????"

Monday, October 14, 2013

Here it comes! The Annual Beg

Every year since I started this blog, each November I begged special needs bloggers for guest posts.  To tell their stories, link them up, and make it more of a community rather than an informational resource....

This year is no different.

I would love to wrap up 2013 with a big cheer and "Yay Us!!!  We survived and thrived another year!!"

I would love for any and every blogger or even if you are a reader...please write your posts and submit them to underwater9800 @ gmail.com (no spaces, just protecting myself from mountains of spam!)  I will, of course, link your blog to your post...

Tell your story.  This is not just for Down Syndrome.  This is for any parent who is fighting the good fight for their child.  This is for anyone who has graduated to being their own advocate and wants their voice to be heard!

Share your proudest accomplishments from this year!

Ask for suggestions for your latest battle.

If you want to just tweak an old post, dust off an idea from out of the back of your head, add perspective, do a picture and a few sentences, or do a questionnaire (I have one that I can send you!), PLEASE get them in to me as soon as possible...or as late as November 29th!

Please join me in raising your voices that you are Thankful You Are Not Alone!!!

2010 Project:
http://superdownsy.blogspot.com/2010_11_01_archive.html

2011 Project:
http://superdownsy.blogspot.com/2011_11_01_archive.html

2012 Project:
http://superdownsy.blogspot.com/2012_11_01_archive.html

"Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." Ecclesiastes 4:9-12

31 for 21: Hug Them Tight

I was completely MIA this weekend.  I am sorry.  I'll explain why in the course of this post...

Once upon a time...I was a lost lamb...I didn't know how to make friends...I serendipitously stumbled onto them and then held them tightly...I have mentioned before that I am an Aspie...as such relationships have always been a bit tricky...I have always and forever sought the "Unwritten Friendship Laws," you know, if you behave in this manner, then you will earn a friendship that will be the stuff of legends and classics...  I could count on a hand the number of Friends I have had at any given time...until recently...

Recently, I have found a cache of people that are on the fringes...some who are lightly antisocial; some who have children with a disability; some who are so hurt and damaged by life, that they are too fragile for a mainstream social life; and some who have simply discovered the ability to socialize and make friends via internet mediums, socializing without the pain of actual face-to-face interaction...  Here in my late 30's I have more friends than I have ever had in my life...I have the social life that most people have in their college years... 

I have asked myself why this boom in the last 10 years?

Coincidentally, the same time frame that I have had Elise...

I think much of it, I can credit to her.

Since having Elise, I pursued people that are a few steps ahead of me in life, searching for concrete suggestions on how to support Elise best.  I have had TONS of therapists and medical professionals pour into my otherwise quiet life.  I have super analyzed each and every emotion that has passed through my mind with intensity, to see what I needed to "fix" to be a better mother, to explain how I felt and what people needed to know to be better friends to Elise and myself, and how I could be a better friend to new parents.  I have completely deconstructed every social interaction with everyone to be able to figure out what social cues Elise is missing and how I can help her decode them properly.  And how to respond to people appropriately.

That said, before I broke down my life to minutia, I had very few people I counted as friends and I was hyper-appreciative of them...one of whom I had lost close contact with, due to massive life changes in both of our lives.  Happily, along with the childhood friends that saved me from being completely adrift, Facebook restored him to me again.

I explain this all to you, so you understand the magnitude of even my past friendships...

On Saturday, I saw a vaguely worded post suggesting tragedy, that brought fear to my heart...after some brief Facebook Sherlocking, I confirmed my deepest fears...

My friend lost his son.

His son was 4, when we were close friends, a golden child with chocolate eyes that was one of those ebullient, bigger than life kids...he was bewitching.  He no longer lives in this world.  We are the worse without souls like that.  I have no idea who he became over the last 17 years.  But personalities like that, enrich your life, whether you are in a smooth sailing patch or a bumpy one....

As a mother, any knowledge of a lost child, will turn you into a quivering crazy.  Knowing that child will break your heart.  Knowing the child and loving the parents will drive pain into your very soul.

I didn't write this weekend, to save you all from "Our Town"-like declarations...

"Does anyone ever realize life while they live it...every, every minute?"

Elise has been restored to us, in miraculous ways, 4 times.  I don't know why.  She won't save the world with her brilliance as an adult.  But each and every time, I realized afresh, how fragile our lives are.  With every restoration, I questioned "Why my kid?"  Why not a kid with limitless potential?  I still question it.  I question it again today...

We are in a easy patch with Elise, or as easy as it can been in tween years...no medical complications...Nowadays, I am fighting for the day to day paths for her...some people may think that is not worth the time and energy that we make it out to be...but trust me, the day to day is the prize...the monotony the treasure.

So, be thankful that your kids are making you crazy and that you are yelling at them to do their homework.  Be thankful that they are rolling their eyes at you.  Be thankful that you are considering applying thumbscrews to your kid to pick up their laundry.  Be thankful that they are still demanding you to tuck them in to bed.  Be thankful that you can pet their hair.  Be thankful for the drive-by hug as you are in the sink to your elbows.  Because not everyone who wakes up this morning will have that privilege tonight.


“We can only be said to be alive in those moments when our hearts are conscious of our treasures.” 
~Thornton Wilder

Go hug your kids.  Right now.  Have a post 9-11 week.  Make memories.  Appreciate them for their strengths.  Tell them you love them.

Be sure you can say like my friend poignantly wrote:
"I am so glad my children and I always, always hug and say I love [you] when we part, and that, that was how we parted Friday when [he] left work."

Friday, October 11, 2013

31 for 21: Five and Dime

Five things I hear too often:

1)  She doesn't look like she has Down Syndrome.

Yes, she really does.  But that's okay since she does have it.

2)  Elise would have been so pretty if she didn't have Down Syndrome/Do you ever wonder what she would be like without Down Syndrome?

Yes.  But I can't change anything and you would never ask someone else if they wonder if they would like parenting better if their kid was smarter or better behaved. It's still not okay.  And I have a sneaking suspicion that she would be exactly the same without the chromosome.  Spunky, witty, funny, hard-working, tom-boy, athletic, and stubborn.  These don't require 46 chromosomes instead of 47 to be true.

3)  She seems like she is high functioning.

Again, I don't say, "Well, your kid seems to be reasonably smart."  The level of independence does not give her credence for living and having a fulfilled life.

4)  You handle her so well.

Some days.  But sometimes we have ugly truth days.  But all the time, I love her and parent her...the same way I do my 3 other kids.

5)  What do you think her future will hold?

I don't know.  But you don't know if your kid will be a doctor/lawyer/investor/inventor, and independently wealthy; if your kids will boomerang back to your basement; or if your kid will wind up in prison, either.  So we're even.


Five things I *WISH* I heard:

1)  I love how Elise tries so hard to_______.
2)  Elise is beautiful/Elise has beautiful hair/Elise's eyes are striking/She looks so much like you
3)  Elise is persistent.
4)  Elise loves so hard/faithfully.
5)  Elise is so perceptive.

If I had a dime for every time I heard "Elise looks like you", I'd have 50 cents.  I really wish people had the courage to say it.  I wish they would note the things that make her awesome.  I wish they would encourage her strengths.  The same as they do any other kid. 

Because she wants the same as every other kid.  She wants you to like her for HER.

Thursday, October 10, 2013

31 for 21: Abuse and Awareness

I know it feels like I come back around to this regularly...but this is something that every parent should be aware of.  And parents of kids with special needs, even more so:

In 2011, I addressed the legitimacy of my deep-seated paranoia about protecting my kids.  I spoke of the statistics and the importance of watching your child and communicating with them, and responding if the unthinkable happens.  HERE

Just this March, I went on a complete tear about abuse and what YOU should be doing if your Down Syndrome "Awareness" is really "Real".  How it's YOUR voices and your conversation with your kids and your votes and your phone calls that make a difference to protect those that need it desperately.  HERE

I want to reiterate that it is YOUR voices that must be heard when things happen to children that no child should suffer and NO ONE should close their eyes to.  Like HERE just this last September in Florida.

This morning, another friend shared her own path in dealing with the statistics and the consequential responses, at The Bates Motel...and she referenced this really excellent list of things that you can do to protect your child.  Typical and those with special needs.

Praying for Parker originally shared the list:

"1.  Start early.  Introduce correct terms for body parts.  This way a they can report clearly if someone engages in sexual misbehavior.
2.  Introduce body privacy.  NO ONE is allowed to tickle or play around with the private parts of your body.  To counter any attempts at or*l s*x include the mouth as a private body part.  NO ONE is allowed to put anything part of their body into your mouth.
3.  Make it clear that if someone breaks the rules about body privacy, YOU (the parent) need to know about it.
4.  Teach your child to stand back and hold out their arms and say – in a BIG LOUD – voice and say, “NO!  STOP THAT!”  “IT’S NOT ALLOWED!”  Practice saying NO!  assertively.
5.  Practice distinguishing secrets to keep and secrets that must be told.  Children and adults with intellectual disabilities often think they can tell good secrets but have to keep bad secrets cause telling a bad secret might make someone feel bad.
6.  As sex abuse is about power, work to empower your child with independence in dressing and toileting.
7. Develop and practice problem solving skills.  Role play different situations and how your child should react in them.
8.  Bear in mind that if your child lacks physical affection, approval and attention, they become more vulnerable to predators.
9.  Develop social skills.  Personal space.  Eye to eye contact.  Make sure your child knows their phone number and address.
10.  Often children with special have already developed a passivity to adults, especially to caregivers and other professionals.  Teach your child it is okay to stand up for themselves.
11.   With non-verbal children consult a speech therapist for communication symbols for sexuality.

These aren’t my ideas.  They are from another Mama who is working with Dr. Freda Briggs, a renown abuse prevention expert on strategies to keep our kids safe from predators."

I certainly plan to add several of these to my own running education of Elise.  I hope you will too.

#31 for 21: Thumbs

This is one video that Elise will never have to watch.  It is innate.  I don't know how she knows, but she has a wider base than any kid I know.

She is exceedingly defensive.  She has never willingly let us wash her in the bath.  She has never willingly let a doctor examine her.  She may or may not come willingly from a store.  And if she doesn't want you to, it will take all of your 37 years worth of strength and skills to get her to do it.

If you don't have 50 lbs on her and she locks down, you are not going to be able to physically manipulate her.

This goes back to the good old days when she was on chemo and STEROIDS when she was a whopping 18 pounds. 

Back then the nurse practitioner wanted her to take Tums.  For calcium.  Let me remind you exactly how many medicines she was on.  A BUNCH.  Most were liquid.  They all involved me sitting on her to administer or giving them to her by her main line port.  And they were all important to her survival, except the Tums.

When I would attempt to give it to her, she would buck and scream.  And so I did what any good mother would do, I smashed it into a powder and hid it in her food.  And she started boycotting food, just in case it was where I hid the Tums.  NOW.  At 2 years old and 18 pounds, this is not safe or reasonable option.  The nurse practitioner got upset at me because I told them I wasn't going to push the issue.  The floor nurses saw me sitting on her while she screamed and gargled and bucked and spit and bit, and backed me up.  The exact words from the nurse practitioner were "She's not that big.  I don't see why her mother doesn't just make her take it."  One of my favorite nurses, told me that she told her "Then you make her, I've seen it.  You aren't going to win."  But rather than listen to actual people who dealt with Elise, she kept prescribing it.  So, I started taking the daily Tums to shut her up.  I probably needed them prophylactically for anxiety anyhow...

Why do I tell you this story?  To drive home a point.  She doesn't do "backing down". 

She has bowed up several times lately and refused to go to bed or leave the library or leave CVS.  This involves her running or fighting my hold on her wrist.

I think she has broken my thumb.  I have had increasing soreness daily.  But interestingly, on Monday, I picked up a bag and slid it from my palm to my shoulder and it almost dropped me like a Vulcan Nerve Pinch.

I broke my thumb sledding when I was in college, and it feels remarkably the same.  I am of two minds about going to the doctor...it's my right hand...and I need it very much.  And braced, it will do me almost no good.  On the other hand (ha ha, pun intended!), if I don't get it to heal, it's not going to be doing me any good anyway...

In similar news, my long term back pain has escalated to spasms, and I am going to my general practitioner.  BUT so I don't look like a drug seeker, I got Elise's pediatrician to write me a note, validating my situation. 



Do you hear the irony here?  I have to have a doctor's note to go to the doctor. 

My life is so weird.

Tuesday, October 8, 2013

31 for 21: Voices of Awareness

I have a challenge for you that will take all of two minutes, over the entirety of a year.  Seriously.

This blog has had 366 posts (not all mine).  This blog has 106 followers and 308 people like it and follow it on Facebook...It has had thousands of individual views.  There has been a grand total of 608 comments on it.  That means in 3.5 years, in average, each person has commented less than twice.  Sure there have been more on the Facebook page, but not enough to skew the numbers much...

I started writing this blog to help folks know and understand better what actually goes on in our life.  Personally, and as a family, coping with an older child with special needs.  I had honestly hoped that there would be more questions asked of us, more dialogue, more discussion.  I had hoped that there would be more camaraderie amongst us folks with the special kids.

Don't get me wrong, I don't post on the blogs I follow NEARLY enough either.  And I will be abiding by my own challenge, BUT...

This year, as a part of your new awareness, could I beg that you comment on this blog?  Only once a quarter?  I need to know if I am getting it "right".  I need to know if you want to hear what I have to say.  I need to know if you have questions that you want answered but are afraid to ask.  I need to know, most importantly of all, that my words and story have made an impact on how you view people with disabilities, and their families...  It doesn't have be deep.  It doesn't have to be huge.  Just 30 seconds, every 3 months, click, done.  Even the "Like"s on Facebook make me all giddy...

I would encourage you to do the same to other blogs you follow...and I would further encourage you to make a list of your friends dealing with *Big Stuff* and drop them a note each quarter inquiring how they are holding up or meet them for lunch...

When you are dealing with *Big Stuff* the Exhaustion often feels like the dark of a cave.  It feels palpable, damp cold, deeply alone.  The comments are whispers in the dark, the grand gestures of friends are the unexpected light, warming your way...


(photo is of Bryce Canyon courtesy Frank May)

Monday, October 7, 2013

31 for 21: Wall-E

 

As I've said before, Elise is ALL about movies...and as she is very low verbally, I am always intrigued with the ones she picks as her favorites.  I may perhaps overthink things, but I think you can always figure on deeper connections than kids can say...

Wall-E is another one of her favorites.  I have to say, it's on my short list, too. 

There is VERY little dialogue in it...I'd say better than 75% of it is based on beeps and body language.  And yet, it is rich in story.  Deeper than many.

The short version of Wall-E is this:  Wall-E is a janitorial robot that had been left on Earth after humans basically trashed it and left, planning to return when life retakes it.  Wall-E's job it to smush trash into squares and store it neatly.  He is alone.  No explanation for how he is the last one left.  My own theory, is that he allows himself to be intrigued by life, and therefore continues to live fully.  He collects trash that is interesting to him, and  sorts and stores it.  He is obsessed with a musical number from "Hello, Dolly", and has a best friend, a cockroach, whom he feeds Twinkies.

 
The ship that left Earth with the survivors sends out reconnaissance robots to look for plant life.  The reconnaissance robot that lands on Earth is a very feminine robot named EVE. Wall-E falls in love with her.  He woos her, and offers her a plant he found, she goes into sleep mode, as she found her goal, to wait for the ship to reclaim her.  He watches over her and follows her on board the ship.  And ultimately inspires the captain and ship to return to Earth to start over.
 
 
Why do I think Elise loves this movie?  I believe that it has very poignant tones of her own life.
 
 
Elise LOVES to sort.  She LOVES to watch bits of movies over and over.  She seeks relationship bonds and forms very strong connections to people.  She is unshakable, once she is committed to an idea or person.  She is enchanted with simple things.  She is inspiring with her passion for life.
 
 
Wall-E is a commonplace robot, with a monotonous life, with a tedious job, with no aspirations of grand things.  BUT he lives his life with gusto and a fullness of pleasure in the magic of day to day.  He discovers what is in the corners of life, and appreciates it.  This simple desire to enjoy and share joy with someone is the most basic of desires. 
 
 
 
I feel like we have muddied the waters a bit over the centuries...and instead of spending time building the most foundational parts of life, we look for the grandiose cloud castles, which are not only not filling, but unsubstantial and disappointing.  The fluff leaves us soft and dissatisfied, and even malcontented.
 
 
Wall-E sacrifices himself for EVE, who in turn, dives in to rescue him. 
 
 
The ultimate of achievable fairy tales, don't you think?  To love past yourself so much that you inspire?  When you jump out of your comfort zone and are willing to persevere in the monotonous, your castles will be built on a solidity that cannot be shaken.
 
 
I think Elise sees the grand in the simple, and her love of Wall-E somehow illustrates that.  And, it is her love for the plain, that beautifies the life around her and touches those in her circle. 
 
 
As Mother Teresa said:  “The greatest disease in the West today is not TB or leprosy; it is being unwanted, unloved, and uncared for. We can cure physical diseases with medicine, but the only cure for loneliness, despair, and hopelessness is love. There are many in the world who are dying for a piece of bread but there are many more dying for a little love. The poverty in the West is a different kind of poverty -- it is not only a poverty of loneliness but also of spirituality. There's a hunger for love, as there is a hunger for God.”  
 
 
This is why I feel the impact of those with disabilities can be so great, and why they achieve a somewhat undeserved status as "saints" and "angels"...They help us see what is important and filter what is real in life.  And that is why it is so imperative that we help them achieve their dreams and live their lives to their fullest, no matter what that be.
 
 
 
 
The stars are after all, touchable, when you are shooting for the heavens.
 
 
 
 


Sunday, October 6, 2013

31 for 21: Speaking of Stalking

I love Gary.  I mean, LOVE her. 

She has an amazing blog about her daughter who has Down Syndrome.  Alex has brought joy and hope to me for my Elise on a "post-ly" basis...I would say daily, but sometimes I go check and see if there is a new post, and *SNIFF* there isn't one...

The Ordinary Life of an Extraordinary Girl

The blog does, happily, have its own Facebook page, on which Gary relates conversations she has with Alex that are pithy and awesome, that haven't made it to the blog for one reason or another:  https://www.facebook.com/pages/The-Ordinary-Life-of-an-Extraordinary-Girl/165047126851472

Also, she wrote a book that I have bragged on before HERE, that you can purchase HERE.

Today, I want to send you to this post in particular:
http://www.theextraordinarygirl.com/2013/08/why-college.html

This has been my favorite post in a while, because it speaks to what we ALL want for our kids, and addresses a prejudice that limits so many kids' futures, when in fact, you *can* give your child the world by opening a door to their possibilities!!

Saturday, October 5, 2013

31 for 21: Adding to your reading list

This is not a book on Down Syndrome...really at all...exactly.

But it is the story of the inner workings of a child's mind, trapped behind the inability to communicate...and even the inability to frame the ideas in his own mind...

And his imaginary friend, who sees the inner workings, and explains them...

I have cried more over this book...I know that makes it a HUGE sell, right?  But it is brilliant and poignant and striking and insightful and truthful...

I literally cannot recommend it enough!!  I am thankful to "Angel The Alien" who follows and comments on this blog for recommending it on her blog...

(PSA:  I do stalk you *nicely of course*, by the way, when you comment on my blog *hint, Hint, HINT* to find out why you are here and maybe what you need/want/hope to see...I am not ego-centric, I really am writing TO you and I always genuinely love to hear from you...even when you write things I don't agree with or controversial things, it gets mixed into the cauldron of my thoughts that are always bubbling and simmering and I invite seasoning...)

http://www.amazon.com/Memoirs-Imaginary-Friend-A-Novel/dp/1250031850/ref=sr_1_1?ie=UTF8&qid=1380894303&sr=8-1&keywords=memoirs+of+an+imaginary+friend

Friday, October 4, 2013

31 for 21: Parenting Complexities...

Forgive me if today's post is a collage of links...but I see no reason to reinvent the wheel...I am more than happy to nod to others' moments of brilliance and the richness of their stories...It's not because I have nothing to say, as much as it is a demonstration of something, so stay with me:

I actually started this blog to offer yet another perspective on parenting that, at the time, I felt was somewhat unique.  And the truth is, parenting is always a unique perspective, knit into a few key truths...

Here was my original jumping off place:
http://tiffanyselephants.blogspot.com/2010/02/truth-of-parenting.html

A friend posted this link (not hers) and asked for thoughts yesterday:
http://downsyndromeuprising.blogspot.ca/2013/07/picking-rocks.html?m=1

I feel like this is one of those posts where every single option is the "wrong one"...and yet they all have validity as the "right one", too!  As I have said (HERE and HERE) I am wrestling with the fact that at some point you have to quit over-thinking and live your life and parent as best you can...for your particular child, typical AND non.  Another friend called the Picking Rocks post a "painful read," and I would absolutely concur.  I feel that there is certainly as much, I would even  go so far as to say more, judgement in the special needs parenting arena as there is in pregnancy or "typical" parenting.  But just as in the same manner, there are 30-eleven ways to do it *right*.  The judgement comes thick and fast, stemming, from I believe, an innate just-shy-of-the-surface panic that you ARE failing your kid, because you feel every square inch of being human and being *not perfect*. 

As a parent, you have to make the parenting calls you can live with.  You have to do your homework, but your life holds a grouping of unique factors that can never fit into a blanket generic fix.  These unique factors are called PEOPLE.  The parents are people.  The children you are seeking to raise are people.  The community in which you are located are people.  The teachers and peers in your child's impact circles are people.  And as people, they all leave their own mark, have their own stories and failings, and have their own needs. 

Consider this post that a friend is wrestling with:
http://gardenofeagan.blogspot.com/2013/10/is-it-really-inclusion.html

And this heart-wrenching and yet, terribly honest and dare I say common perspective?  (In the feelings and the paths they can so very easily take)
http://www.nopointsforstyle.com/2013/10/issy-and-kelli-stapleton-murder-suicide-and-family.html/

And, while I'm at it, let's bring in the ever popular/infamous proverb:  "It takes a village to raise a child."  I'm not going to debate it, I am just going to say there is a lot more to parenting than a recipe to the perfect kid.  There are more flow charts and scaffoldings of ideas and consequences in raising a child than a library can hold.  BECAUSE THERE IS NO ONE WAY.

Parenting is a hard job.  You have your own baggage and your own hopes.  You have your child's strengths and weaknesses, abilities and inabilities.  You have hope and desperation. 

Ultimately, you have a child that you love, that you need to raise...and you have to do the best you can...and pray that it's enough for that precious life you would give yours for.








Thursday, October 3, 2013

31 for 21: Things You Don't Know #3

Things You Didn't Know #3

Did you know that you can love things for the possibilities?

I mean, we all know that lots of women get involved with men for their "potential"  (for the record this is a load of hooey, don't do it!!)...Jerry Maguire, anybody?
Skip to right at 1:00

So, anyhow...

Elise loves books.  She will still look at books, CHAPTER books, mind you, with no pictures...and stare at the words...and flip gently through them...and pet them, for the promise that the words hold....  For the stories that she knows they stand for.

 
 
 
Ever since Gabriel was a toddler, we have gotten Lego catalogues.  I grew up with Legos almost as closely as I did books.  So as soon as I had kids, I was on their mailing list.
 
 
About a year ago, Elise started begging for Legos.  I bought a set and she tried to put it together and it was an exercise in frustration.  I tried to encourage her to use Duplos, and she was completely insulted...and so I put it in a baggie in my pantry. 
 
My husband found it this weekend as he was (what we affectionately call) "rage cleaning"...this happens occasionally, as I tend to visually clean...as in, I clean what I can see...and periodically, he finds a stash of "cleaned" stuff and he *ahem* takes it out for me to sort and do away with...
 
BUT I digress...
 
The Legos were found...and Charlotte got at them first...she tried SO hard to follow the directions, but ended up getting out her beloved Duplos...  When Elise found them, she was ecstatic...and promptly pored over them for about 45 minutes.  And built something.
 
 
 
THIS IS AMAZING.  The fine motor skills that she has been fighting for for the last 10 years?  Finally paid off for something that she WANTED.
 
The Legos are also little bricks of possibility.  Just like words.  They can be made into ANYTHING.  They don't need to talk.  Their actual goal is not "play", their goal IS the set up...  Really, they are her perfect toy!!!