Thursday, December 26, 2013

The Magic Trike

Elise was the reason my 7 year old didn't learn to ride a bike until she was 6.  We had given up on bikes as a family experience.

We gave up on bikes around the time her weight went over the trailer limits...and our muscle's coping options...she is terrified of the insecure-ness of bikes.  She is petrified of even the exercise bikes upstairs.  I bought her one that I hoped she could use for exercise alone and to get her used to bikes in general, hoping we could eventually graduate to a *real* one.  It was seriously ugly.

I have been chatting with my local bike guy about building her a tricycle.  Like this:

We have spent several sessions where I realize something and go back to him to see if it is feasible and how much it would cost to make it work. 

We were talking a minimum of $500.  Probably more.

Because this is a rather large cost, we had opted to wait another year, until she was 12, as she will probably be within an inch of her final height.

2 weeks ago, I found a listing on a Facebook local yard sale group for a trike.  It looked so cool, and it's cost was less than half of the Amazon listing.

I chatted with the seller and Ethan and I decided that it was such a cool option that had a HUGE possibility, and we decided it was worth the trial.

So I broke my neck, to get an hour across town to buy this bike, when I should have been getting ready for Christmas.

Elise is so hard to buy for.  I spent very little on her for her birthday, because it makes no sense to spend big for ceremony's sake, and I decided that if she discovered anything during the year that she got excited about, that I would make up for it then.

Because the Mobo Trike is about 6 inches off the ground, it's rather like a bike and a Big Wheel got married and had a baby.  Because of its low profile, it is significantly less wiggly and scary sensorily.

The handles are a little different, so there was a learning curve.  But she had ridden a trike with a similar driving mechanism when she was in pre-K.  It took about 3 minutes to talk her onto the bike, 5 minutes for the steering idea to make sense, 15 minutes for her to remember, another 10 to remember the hand-brake, and 15 minutes for her to not slam her feet down on the pavement and yell "Scary!!   Fast!!"  There will need to be another few sessions to remember you always have to peddle in the same direction, but all in all, it was pretty much a miracle.  Easy, fun, and almost a typical experience.

She did great, and I plan to take her to my church parking lot, and set her free sometime over Christmas Vacation.

Here are a few pictures for you to enjoy, a helmet will be added next time, but with all the sensory issues, and that she was unlikely to fall off, it wasn't as necessary for our start trip.  In 20 square feet of driveway.

And that, Ladies and Gents, was darn close to a Christmas Miracle!!!

I hope that your holidays and Christmas are lovely and full of good memories...and we'll check in again, soon!!!

Friday, December 6, 2013

Celebrity Crush

So Elise is eleven.

When I was eleven, I had my first celebrity crush.  Errol Flynn made my heart flutter.  I know, weird.  I'll take my geek points with pride, thanks...

Elise's best friend, Megan, is super in love with One Direction.  Like, that was her birthday party theme.  And she got pillows and purses with their teen heartthrob faces all over them...And her friends are attempting to raise $ to send her to a concert, to blow her sweet mind.  HERE, in case you want to spend the $5 of a Starbucks to make a little girl sparkle with joy...

I got to thinking today who Elise's first heartthrob would be.  Someone who makes her jump and scream?


She knows the words to all his songs.  She has him on her ipod.  She has a plush version of him that she kisses.  She doesn't miss his movies.  She loves him.

Totally sigh worthy, right??

'Course it doesn't hurt that he's as obsessed with Christmas as she is....

Thursday, December 5, 2013

The Hissy Fit I Have Not Had

I am lightly hopped up on cold and flu medicine, so forgive the brutal honesty, the poor grammar and any bizarre spellings.

I have questioned the wisdom of posting this, but have decided that it is wiser than finishing my Holiday PSA post while in this questionably honest mindset.

I had a dream last night where I had several people announce that they were pregnant.  For some reason, several of these were public and involved crowds of people milling about offering their congratulations and the blushing mama said all the usual things...and in two cases, I reverted back to my old self and went apoplectic and verbally dressed them completely down for one of their comments...

Now, these things have been said 639 billion times...and I tend to react the in one of three ways about one of the pat answers...

"I don't care if it is a boy or girl, I only want a healthy baby."

Now, I know my reactions are colored by my own experiences...and I used to not think anything about that simple sentence, but these are the things that now go through my head:

1)  I sometimes only have a flicker of annoyance.  Like an annoying fly.  I know that health is important and something to be a matter of fact, I know more than most, what an amazing gift a traditional, healthy birth is...but if everything doesn't go according to plan, you are still a parent and you will still fall madly in love with the tiny person that you are suddenly and abruptly in charge of and it is still good and a blessing.

2)  Occasionally, when a friend confesses to wanting a particular gender, I have been taken with an overwhelming hope that they don't get their desire...not because I don't want them to be happy, but because I think they may be missing out on the Real Happiness, blessing and general awesomeness of:
                          a)  not missing out on a particular gender
                          b)  getting the life that you didn't plan for

And, sometimes, I think that the lack of perfection or health falls under "b".

I have a LOT of friends with kids with varying forms of disabilities.  Some disabilities are frustrating, some are difficult, some are heartbreaking, some are almost more than they can bear.  But, I can assure you, that NOT ONE would give their kid back.  All of us would love to see our kids not struggle, and we certainly would love an easier path for ourselves.  But I have never spoken to a parent, that, if given a choice of their child with all their heinously glorious issues, or to never have them, would choose to have never had their child.

Everyone can speak to SOME blessing that they received in their path, no matter how difficult. 

3)  And every once and a while, I am taken with a mind-numbing black rage in which I feel their comment as a scorn against my baby.

I am taken with the full on crazy obsession that my baby, no matter how far outside the norm, is the most delicious specimen of babyhood, toddler hood, childhood, or adolescence there ever there was....and sometimes, when I hear that off the cuff comment, I want to tear your throat out for even thinking that my precious isn't worth having...that you wouldn't want my baby, my life, my experience...   NOW, I know rationally, that even with a perfect child, you probably don't want my kid, BUT in my eyes, I love my child and I wouldn't trade them for ANY OTHER CHILD, ever.  And if the idea even flits through your mind that you won't think the same of your child, no matter the lack of perfection, that breaks my heart.
Consider that every child is the possibility of...everything...
And that's somehow always worth the price.

Monday, November 25, 2013


People with Down Syndrome have a significantly higher propensity to get Alzheimer's Disease.  "By age 40, a full 40 percent of people with Down syndrome will develop the disease, and by age 50 that rises to 50 percent, Skotko told TODAY’s Maria Shriver."  This terrifies me.  I mean, full on, make me sick, terrified.

I know a typical someone who has been showing signs of Alzheimer's...I was suspicious, and googled it...and my suspicions were certainly confirmed:

  • trouble handling money and paying bills
  • repeating questions
  • taking longer to complete normal daily tasks
  • poor judgment
  • losing things or misplacing them in odd places
  • rummaging and hoarding
  • mood and personality changes
  • increased memory loss and confusion
  • problems recognizing family and friends
  • inability to learn new things
  • difficulty carrying out tasks that involve multiple steps (such as getting dressed)
  • problems coping with new situations
  • hallucinations, delusions, and paranoia
  • impulsive behavior

  • Where it gets a little weird, is that Elise exhibits half of the things on this list on any given day.  So, frankly, it's not that much of a stretch to think that she will be susceptible to getting it.  Because I surround myself with people who are almost as blunt as myself, this sentence has been said, more than once:  "So, how will Elise having Alzheimer's be that different than now?"  Yeah.  That is part of my own personal terror torture...will I even know that she has Alzheimer's until she doesn't know me?

    I hope that the medical community will choose to pursue the link between Down Syndrome and Alzheimer's Disease.  I don't like the idea of removing the third 21st chromosome (I'll save that one for another day)...but I have a lot of hope that in messing about with the links between Down Syndrome and Alzheimer's disease that they find ways of wiping the plaque and helping free the minds of those trapped...

    Because trapped out of your own life is even more terrifying than watching it happen to a loved one.

    Can you do anything to prevent Alzheimer's in yourself and your loved one that has a predisposition?  Actually, yes.

    The six pillars of a brain-healthy lifestyle are:
    1. Regular exercise
    2. Healthy diet
    3. Mental stimulation
    4. Quality sleep
    5. Stress management
    6. An active social life
    I fail to see how any of these are not something we should all be striving for anyway...and things this generation tends to allow many of these to slip regularly with flippant excuses....

    Don't make excuses.  Implement changes.  Protect your body.  Protect your brain.  Protect your future.


    Monday, November 11, 2013

    TMI and Shaving

    Elise is 11.  We are entering the lovely world of adolescence.  Which includes attitude fluxes, emotional breakdowns, and body changes.

    Lately, her sensory issues are taking a forefront.  Interestingly, one of her more debilitating issues has become her leg hair.  Like laying in the floor weeping over "HURT! LEGS!!"  It took me a little while to figure out that her leg hair is getting coarser, and is bothering her with her legging jeans.  Ladies, you totally know what I am talking about, right?

    So, think about a gal who gags at the sight of lotion, retches with it's application, hates baths and hair-washing, and jerks around and screams over her hair being brushed.  Then add a razor.  It's enough to cause an eye twitch just thinking about....

    First off, unless things get desperate, Nair is remarkably like lotion in texture.  And so it's at the end of my list, even though there is no razor involved.  Also, Elise's skin is hyper sensitive and dry, and I am really quite concerned how it would react to the chemicals in Nair.

    Which leaves razors, electric shavers, and getting it zapped off.  I plan on trying a few of these, and I will let you know how each compares in her response and effectiveness.  On my short list is the Schick Intuition, an electric razor, and the NO NO.  I know someone who is planning to purchase the NO NO, so I plan to beg and plead for a trial run.

    I put this concern up in a few forums for advice, and I got steered to several options, one of which I was leaning toward anyway.

    So, I've been looking low grade for the Schick Intuition on sale...and was planning on looking for a coupon, when I found it on crazy sale at Kroger for $5.99 this week.  They are usually around $10.  So I snapped it up.

    There are a few reasons I was tending toward this razor. 
    1)  They have a big soapy thing around the razor head that goops up your legs a little, so you don't need a separate soap or shaving cream.
    2)  Because of the big soapy thing, the razor head isn't quite as close a shave, so would reduce the nicking factor.
    3)  The razor head itself has little wires wrapping the blades to prevent nicks.  And even if you slide it sideways, it keeps your flesh from getting caught in the blades.

    4)  It has 4 blades! Even though it has all these anti-nick factors, it does have 4 blades, so you get bonus blade passes in one pass of the razor.
    5)  Also, the big soapy thing has moisturizors in it, so lotion after would be less necessary.

    Friday was such a day from hell thanks to Elise's reapplication for the Katie Beckett Deeming Waiver, so I figured, why not just round it out...

    So I ran a bath, and endured Elise's usual protestations.  And did the warning counting to get her in.  And let her play with her birthday party plastic dolphins, whales, and sharks for a while.

    And tried not to think about the Jaws theme song, which of course once I thought about, couldn't stop.

    And then I talked up how she was getting so big, and talked about her leg hairs hurting her, and told her we were going to get them off so her jeans didn't hurt.

    Then I played show-and-tell about the razor and told her what I was going to do with it.

    Then I had her sit sideways in the tub and put her foot up on the tub wall.  Prayed.  And made one pass with the razor.

    And, praise GOD!!  She didn't completely wig out.

    She got kinda squirrely, and had to touch her leg after, and swish it in the tub.  And we took probably 50 strokes of the razor per leg, when it could have taken 15.  And it was a little of each leg at a time....and back and forth....BUT, we finally got them done.  It took me way longer to talk her into letting me take a swipe at her armpits.  But I finally got one on each.  This apparently tickled and she giggled and it took me even longer to talk her into the other side...but it finally happened.

    At this point I had a crick in my neck and back that was going to black me out, I'm not sure from the stress of the situation or awkwardness of shaving someone else or the length of time involved...and I was more thrilled to be done than even Elise.  She even volunteered to take a swipe at the very end.  I figured we shouldn't mess with success for a little bit.  And I told her she could have a turn another time.

    So I am pleased to report, in the face of a sensorily spazzy day, she was able to handle it.  It will take a significant amount of patience and require more time than usually expected, but we have a working option.  I don't plan to do it again, until her leg hairs bother her again...I anticipate about once a week or so.

    I have to admit this was a gigantic worry, and having this much success the first time, was a huge answer to prayer...and yes, I was totally praying over shaving my daughter's legs.

    When I signed up to be a parent, I didn't anticipate this being in the job description...but it isn't as bad as I feared...I hope that some of my other stresses that are already causing panic prove to be as resasonably fixable...

    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

    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*


    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. 


    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:

    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!

    Educate yourself:

    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:   

    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:

    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:

    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.



    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 @ (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:

    2011 Project:

    2012 Project:

    "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 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 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 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'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.