31 for 21: #31 Halloween

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

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

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

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

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

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

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

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

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

31 for 21: #30 The 21 Snapshot

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

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

HERE is last year's!

And for this year:

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

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

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

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

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

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

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

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

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

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

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

12)  She still despises to have her hair brushed.

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

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

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

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

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

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

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

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

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

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

31 for 21: #29 The People That You Meet

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

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

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

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

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

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

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

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

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

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

Bonus post doesn't count... :)

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

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

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

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

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

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

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

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

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

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

There I said it!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No, seriously, is she talking to me? 

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

*SIGH*

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

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

Um, Yuh.  Feeling you, Anna.

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

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

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

Again...not so much.

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

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

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

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

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

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

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

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

Yeah.  This is a silly rant.

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

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

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

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

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

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

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

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