Some for 21: Speaking of

You'll notice my super commitment phobic title.  I know I won't be doing 31 posts for the annual "31 for 21", so I just promise *some* this year.

As I have mentioned so many times before, Elise's speech is her area of greatest delay and struggles.  She has both delays and fluency issues.  Disfluency being the proper terminology for stuttering.

We have speech therapy both at school and outside school.  She gets it for functional reasons at school and personal expressionism and general communication outside of school.  Both therapists have focused a lot of effort targeting the disfluency.

This week, after a very severe week of gum ups, her outside therapist brought up speech devices again.  So I dug out the talk box that we got for her over 5 years ago, charged it up and let her see if it looked like something that can finally help with some support.  It looks like the buttons are still too small and the layers too complex, in short, the problems are still not outgrown.

So I guess we will have to search for something else.  I do know that Elise likes to talk.  I know that she is willing to go to great lengths to get her thoughts across.  I hope that we may be able to find something that will give her all the communication that she so desperately desires.

Air

 

 

For those curious, Elise has had a genuine struggle adjusting to middle school.  I love her teacher, and she loves her teacher, so that portion is lovely.   She is the kind of teacher who knows what to push and how far to go with things...and when to stop and let things go. 

 

However, since about 2 weeks before school, she has been excruciatingly tired.  She will struggle to wake, beg to go to bed early, nap during the day, and have an unusually high number of meltdowns.

 

Some are legit, tween tantrums, some she has no control over.  And those are what worry me.

 

When she started school, there was the usual testing period.  And then she got a new parapro, and that lady needed her testing time...but I was still dragging her to school and she'd sleep all the way home and then some.  She also decided to throw in copious weeping, periodically...with no standard explanation.

 

And then I found out not only was she napping 1-2 hours in the car, but she was sleeping at school 1-3 hours...on top of begging to go to bed and sleeping in.

 

So, I did what every good cancer survivor parent does, I panicked and had all her blood panels drawn.  They came back all normal.  Even her thyroid, which is honestly had been what I hoped was screwy, because it would explain the exhaustion and the emotional dippiness.

 

I hate getting no answers...so I decided to mull things over a bit and see which other direction to strike out into.

 

We went to a friend's birthday party this weekend and besides being great fun, it turned out to be a very educational party!

Elise ran around and danced and got blue around the mouth.  I suddenly have a new direction to start in.  It would explain why she's so tired.  She has a history of bronchial asthma, and it can be fairly invisible, unless you are watching pulse ox or she develops croup and goes into distress.  It even explains the emotional volatility, I know I am always more irrational when exhausted!

 

Sadly, we can't get in until November 6, but we have rescue medicines until that point.  I'll keep you posted.

Ribbons and Whatnot

I have obviously taken a very long vacation from posting.  As a short explanation, my husband decided to run for a local political seat earlier this year.  I locked up my personal Facebook page, the blog's Facebook page, and my blogs so there would be nothing that I said carelessly...like a human...that could be used against him.  He ran a very positive and honest campaign, which makes me very proud, but that did not stop others from choosing to do otherwise.  So I am exceedingly glad I took those precautions.  He was not chosen, but I had such a horrible taste in my mouth from the attacks, I literally had panic attacks when I thought about unlocking my security.

I have still opted to keep some security on the comments...forgive the flippancy...but "It's me, not you."

I spent 75% of my Childhood Cancer Awareness month worried for the health of someone I love...and wondering if I had breast cancer.  So I was not really in the mindset you have to be to revisit cancer.

I will be 40 in November, so I did my duty, spurred by several friends who are breast cancer survivors, and had my first mammogram.  Because I have had several bouts of mastitis while breastfeeding each of my kids, I fully expected dodgy mammogram results.  So I paid extra to have the 3D mammogram.  However, instead of the quick results they promised me, they didn't call me for almost a week and a half.  There are some results that "no news is good news"...stuff like this is less so, because it means it wasn't a quickie overview...so when I was called and told that I needed an ultrasound, I was already a smidge stressed.  However, I wasn't really worried, because I figured that they had found scar tissue from the infections.  I kind of blew it off.  But the nurse kept stressing that it wasn't "That kind of call back.  It's the kind that is no longer a diagnostic call back." to the point that I was genuinely strung out by the time I had the ultrasound scheduled.

And then, yesterday, I was informed that the spot was a cyst that was "The wrong color on the ultrasound." And that I needed to have an aspiration/needle biopsy. 

I typically have a "DON'T Google the symptoms." stance on things because you always have a tumor by the time you read all the hyperlink options.  But in this case, the nurses had gone to so much trouble to tell me how atypical this was, that I figured that the odds were bad.  Ironically, when I finally got the guts up to Google it, because, really, what's a worse WebMD outcome than cancer?  There were way more assurances that these come up cancer proportionately less...which led me to really question "Why all the medical cautioning?"  Which only left me nauseated.

This morning at about 8:00, they emptied the cyst, and it was benign and that there was no need for pathology.  So I am left with a hefty hospital bill, but a release to normal life...which looks way sparkley and brighter today.

BUT as I looked over at my friends who have fought this beast, because I wondered if I would join yet another club in the Awareness Month, I was struck at how the white washing of breast cancer is mainstream just like the glossing of childhood cancers.

And it really makes me mad.

Breast cancer awareness is not all pinks and cakes and 5Ks with balloons.  It's ugly, it's vicious, it's destructive to family life, general health, and it has long term impacts.  I know several survivors that have beat it, only to have it loop back and attack another system.  I hear all the funny games of what color bras you are wearing to bring "awareness", but it's not kosher to point out that even those who have survived and have something to put in their bras and had reconstructive surgeries have aggressive scarring and permanent damage and suffer long term effects.

It's not about the boobies, People, it's about saving lives.

Childhood cancer awareness is also not all about the beautiful, shiny bald heads on the St. Jude commercials.  It's not the beautifully written books/movies of Nicholas Sparks or John Green. 

It's about kids who have DIED.  Or those who have survived with long term losses, brain damage, and lost childhoods.  It is an ugly monster that steals what you take for granted.  It steals things that you simply don't "deserve because we live in the world we live in".  It destroys things that are hauntingly beautiful.  Things as basic as your family being together. It steals futures.

Childhood Cancer Awareness Month is always a kick in the teeth to know how resilient kids are, how their bodies fight like wild animals against cancer, but that the funding for new treatments for a cure is virtually non-existent.  It's about 4% of the cancer research allotment, and it stands to do far more good and offer more saved futures as a unit. 

For me, it doesn't matter how long it's been since Elise was on treatment.  I feel its impact regularly, but I don't despair in what was ravaged, I treasure that she was given a future.  And the kids that are still fighting don't stop when September is over.  If you ever want to pass on an over-priced coffee, there are lovely organizations that would love your dollars to make a difference for kids and their families.  Even if you missed the publicly prettied-up window.

I am posting 31 for 21 posts for Down syndrome this year on my personal Facebook page and this blog's Facebook page: https://www.facebook.com/Just-a-Little-Muchier-Muchness-146239852081726/timeline/.  At the end of the month, I'll collect them all up and post them in a single post on here.  So do like us and follow to check and see what hits me as important to share this month...I am always just as surprised as you.

P.s.  It's good to be back, I've missed our little chats.

31 for 21: Pizza Friday and Puppies

Elise loves Pizza.  Perhaps with a passion that most people cannot comprehend.

She wants it for any celebration for the rest of forever. 

Whenever I asked what people wanted to eat, it was always pizza.  If the answer was "no", it was followed by massive weeping and huge depression.

About this time last year, I discovered that if there was anything Elise liked more, it was expectations.  She loves a constant schedule.  I think this is a primary reason she likes school.  I am not a schedule person.  It does not make me happy.

BUT I don't like constant sadness, either.  So we implemented Pizza Friday.  She had a constant expectation that she would indeed get pizza, without fail on Friday, but tonight is not Friday.  She could make peace with that, Friday nights became no-brainers, and the rest of the kids thought this was marvelous.

It has encouraged us all to enable more routine, and it has made it our lives much nicer...I have even bought a planner.  *gasp*

 

 

 

Today, October the 3rd, 2014, marks another shocking milestone.

 

Today I was able to march into a regular store, with no list or angst, and purchase Elise's birthday presents.  And I know, with no reservations, that she will love them.  And play with them.

 

This may be a weird piece of information, but Elise doesn't really play with toys.  She likes toys, but has very few that she interacts with and takes pleasure form.  About once a year, she figures out some aspect of "play" and life improves drastically. 

 

She is turning 12 at the end of this month, and what has she been pining for?  A Nerf Crossbow.  For about 6 months.  I cannot wait to present it to her.

 

I also found this blast from my past, Puppy Surprise:

It is a pregnant puppy.  You open its Velcro tummy, and get a secret number of puppies out.  It's a little freaky, but for someone who is obsessed with matching and family, it's going to blow her mind.  And its name is Popcorn.  Another one of her favorite things.

I'll post pix of her receiving them, but for once, I am really, REALLY excited to see her reaction!  :)

As always, her birthday reminds me where she is not, compared to her peers, but, every single year, we can look back and see some major strides in some aspect of her development.  And we quite honestly party!

This year, we are PLAYING!!!

31 for 21: Angels

I have totally hit this one a thousand times.  I am sure I will hit it again another thousand...

If I hear "Oh, you have a child with Down Syndrome?  They are SUCH angels!!!"  again.....

Well, I'll sigh and tell them my kid is just like theirs...she rolls her eyes at me, she ignores me, she talks back to me, she snitches food out of the pantry and lies about it...pretty standard for any 11/12 year old...  Not really that much of an ANGEL.

But I do have to bring to the fore a thought I had yesterday...When I was thinking about their drive to live their lives like everyone else, I am reminded that they also tend to celebrate...a lot.  Which is, I think, why people think that they are such angels...  Which made me wonder why they seem take the lion's share of celebrating?  I think it comes back to my commentary yesterday, on the needfulness of trying harder than the average bear to succeed in their plans for life?  I think the world thinks they are angels because they are triumphing more, because they are more aware of their goals, because they have to work harder and have more pressure than most.

Pro soccer players or those at the World Cup, for example.  They play the same game as my 8 year old niece.  The plays are almost identical.  The goal, certainly is.  To win.  But their celebrations... just...wow.  I cannot say in all the years of watching soccer games in high school or watching my own kids, have I seen this: 

 

And my sister-in-law hasn't posted any pictures of my niece like this:

 



I propose that the celebrations that almost all the people I know with Down Syndrome indulge in, may not come from an angelic sense, nor from a child-like comprehension, as much as an exaltation of success or inclusion...against a hard fought battle...after a long, excruciating, physically demanding, and soul-sapping battle.

They might just be reveling in victory. 

Which only earns them angelic status, if you want to go the flaming sword route...which, I wonder if it gives you as much pause, as me?

31 for 21: Awareness is a stupid word.

Awareness is a stupid word.

There, I said it.  This is my annual blog challenge, of making a post every day in honor of October being Down Syndrome Awareness Month. 

I know this is silly, since I just promoted Childhood Cancer Awareness Month.  But it's a little different, stay with me...

Some awareness months make more sense.  Like:  "Hey, it's important to make sure you are aware of how your body works, so you can make sure you aren't broken."  Breast cancer, heart attacks, prostate cancer...stuff like that.  Also, awareness that promotes being involved to help research funding, that is reasonable.

Others are dumb.  "Hey, something like this exists outside of you and your circles of 'normal'."  Most people already know that.  You know how I know?  Because my kid gets crooked looks whenever we go out.  Anywhere.  People are darn sure aware she is different.  They may or may not know why, and the medical jargon of what causes her to be different is almost worthless at changing perception.  That eliminates only those who think they might catch her different-ness.

I am also aware that I am not 5.  I cannot catch being 5.  I understand what causes being 5.  I understand that being 5 is different than being 38. 

So.  Big whoop.

I confess, I am spoiling for a fight, a little, this year.  I am done begging for you accept that my gal exists and I am proud of it.  I am requesting that you choose to understand, and better your life for the knowledge.

If we did say, Down Syndrome Celebration Month, or Down Syndrome Appreciation Month, I think I'd be more excited.

Being aware that somebody is 5, is different that appreciating what it is to be 5 and the magic that inviting a 5 year old to share their perspective in your life.  5 year olds can play with abandon.  They don't care what people think.  They can create anything, they suffer no barriers of why something could not work.  They get excited by things that you take for granted.  They get ecstatic about things that annoy you.  They aspire to do the fantastic.  Their imagination is limitless.  They are lucky.  You should aspire to incorporate their "joie de vivre" into your dumb, boring, "adult" life.

Being with a 5 year old invites their perspectives to unravel your barriers, to grow you past others' strictures on you, and to reactivate your imagination.  It's terribly cool.  And you are reminded what you valued when you were 5.  You are refreshed.  (After you sleep off being tired from growing and changing so much, so fast, of course.)

Well.  Guess what?  Being with someone who has Down Syndrome can regenerate things in you, too.  They are awesome.  They are remarkably like other nice, boringly normal people. 

Because of all the medical jargon, they have to fight a little harder for "normal" and it may take a little longer, but they can achieve what you can.  But because the achievements in their lives were a little more like a Spartan Run, instead of a rolling walk through a meadow, their triumph is palpable. 

Because their training for the Spartan Run of life was more rigorous, they may be more focused and aggressive and (dare I say it?) stubborn.  They are also people.  Tired, pushed, and aware.  And they want to achieve what you do. 

Guess what?  You need to take this October to understand their training, their battle, and swear to come along side and cheer.  And sign on as training partners.  Offer experiential advice.  Offer support.  Offer water. And see the mud in their lives as a sign of their mammoth achievement, not as a sign that you are better or different.  See it as a sign that you should give your respect.  Offer camaraderie, not pity.  They don't need that any more than a rock in their shoe.  If all you are going to do is stick rocks in their socks and put obstacles in their way, get out.  And know this, when they overcome your barriers, which they will, you won't be making them look bad, you will look small and selfish, and they will look triumphant.

So.  Forget awareness.  Sign on for appreciation or celebration.  Or accept that your life will be the less for not "accepting" them.

Hoarding

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.




Resources:

http://www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp

http://www.alz.org/stl/documents/hoardingrummaging.pdf

http://www.nbcnews.com/health/how-down-syndrome-may-help-unravel-alzheimers-puzzle-8C11084898

http://www.helpguide.org/elder/alzheimers_prevention_slowing_down_treatment.htm

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!)

 

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:

My Base 10

Stars in Your Eyes

Her Birth Story (and how it was mine, too)

 

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'

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.

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.

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!!!

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???????"

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.

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.

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)

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.