Friday, October 28, 2011

21/31 for 21 Disney Query

This shouldn't count as a post, but I'm 8 posts behind in my 31 for 21 quest so what the heck.

Has anyone ever sought out a Special Access pass at Disney?  Their website addresses wheelchairs, sight & hearing straight on and then get a little vague about other stuff – mostly sensory issues presumably for kids with autism.  What about Down syndrome? 

One place recommended a doctor's note when, “guests' challenge might not be readily apparent…. The challenges of a Down syndrome may be more quickly ascertainable than those with autism.”  It was gently said, but there you go – “quickly ascertainable”.  Yeah.

So not diving into the disability pageant.  But anyway…

I get that Disney might be a minefield for any kid with sensory issues, that's not the point.  Here’s my moral dilemma:  I don’t think my girl has any hard core sensory issues.  Does she need to have sensory issues too, in order to get a pass?  Isn't the Ds enough, on its on?  But then again, I’m not sure Disney would be harder for her than any other 3 year old.  We haven't yet tried her in that tornado of long dull lines followed by brief thrills, sugar highs, sugar crashes, and crowds, all the while being stalked by giant stuffed creatures [doesn’t this sound like FUN?].  What's the "typical" baseline for an over-stimulated, over-tired 3 year old?  By how much do we have to deviate? 

Fact is, there are some things, no matter HOW "well" she ends up doing, that will be more challenging – harder – and that she might miss out on.  [I could tiptoe around that & add a bunch of qualifiers & downplay the “mainstream” experience but this was supposed to be a quick post & I’m rambling so will just cut to the chase].

So if there’s one place, the happiest place, that actually let’s her take advantage of that 47th and gives her some extra special attention and love, then why not?  Why not cut her time in line and squeeze as many thrills out of the day as she can?  Can we do this without diving into the swamp of disability entitlement?
I’m thinking yes. 
And I’m wondering just how magical that pass is.

Thursday, October 27, 2011

21/31 for 21 Snacks (instead of a smorgasbord)

Tidbits that I haven't worked in anywhere else:

~  Line from the movie Contagion, seen last Saturday with my brother:
"Blogging is not writing. It's just graffiti with punctuation."

~  My girl, on the elevator, at our appointments on Tuesday:  She let go of my hand when we got on, because she's a big girl now.  But then it started moving, and instead of crying - which is what she used to do, poor thing, elevators terrified her - she came back over, carefully took my hand, and then stood on her tiptoes. I guess to minimize that ground-giving-way feeling?  When we stopped she laughed, presumably with relief that we'd arrived safely.

~  My son, who let me pick the book tonight and actually seemed to enjoy Yertle the Turtle.  Which, by the way, should rank right up there next to 1984 in terms of anti-authoritarian works. 

~  And this.  We get a tiny rebate on our health insurance premium if we fill out a health questionnaire.  Some of my answers must have been wrong. 
In case it's too small to read, it says my stress level is "low" 
Survey FAIL.

Wednesday, October 26, 2011

20/31 for 21 Moose, Another Dog Story [*with bonus edit!]

This is Moose.  Moose is the only dog we got as a puppy and she is the most neurotic, worst behaved one of our three.  This says great things about our parenting skills.  We'd just adopted Maude, and Max was still with us- we did NOT need another dog.  But my sister in law's cousin's friend's roommate's sister (or something like that) called and said she'd just bought a puppy but realized she couldn't keep it and was trying to dump it before her child came back from a weekend away.  The breeder wouldn't take it back (read: puppy mill??) but she offered to sell it to us for $200.  I laughed openly at her but said if the only other option was the pound, I'd take the dog. 

Tactical FAIL.  She called back 5 minutes later and told me I had a new dog.  And, bonus!, she'd throw in the crate, leash, collar, brush.... any evidence she'd nearly bought her kid a dog was being disappeared.  Sad for the kid, but I guess better that he didn't know? 

Moose has some challenges:  She will choke herself on a regular leash and collar - to the point she'll gasp and wheeze.  Turns out those evil looking pronged collars are effective - file that under things I never thought I'd buy.  She's not allowed upstairs because she will jump on your chest in the middle of the night to smell your breath - which is creepy.  She likes to eat mail and pens.  Sometimes she gets really nervous when people come over - which is one of the reasons I am ever, ever grateful for our wood floors.  And for being such a nervous thing she is annoyingly persistent.  She routinely jumps onto our kitchen table to patrol for leftovers.  Yes, I know, highly unsanitary.  I'll yell but she won't jump off unless I'm within 4' of her.  Smart little twerp.  Also?  She's a little dog... with the resulting high yippy bark.  I never thought of myself as a yippy dog person but what can I say?  She grows on you.

There is nothing funnier than watching her slide across the floor when we play fetch.  We never have to worry about toddler crumbs under the table (ok, fine, or on the table either).  She also excels at chewing up the prolific Happy Meal toys.  And she is also the first to snuggle up in my lap and lay quietly, happy for the affection and companionship. 

And, no, this is not a metaphor for anything.


Edited to add:  I’ve been trying to be a bit less gloom, doom, & whine around here so thought the cuddly dog bit was a good place to stop last night, but I would be remiss if I didn’t add this part - We thought Moose was a boy.  The lady who gave him her to us said he was a boy, he she was a very fluffy fuzzy puppy, and he she was small – low to the ground, if you will - so we didn’t, um, notice anything.  Or, rather, not notice the lack of anything.  Who checks their dog’s credentials?  We took him her in to be neutered but the vet called Matt a bit later chortling.  She could barely breath she was laughing so hard. They couldn’t neuter our dog. 
“Why not?”
“Well, we can spay her. Because she’s a girl…”
Peals of laughter.
Matt made ME go pick her up when they were done.

Tuesday, October 25, 2011

19/31 for 21 Eager? No. Tubes?

Just a quick update on the afternoon:  The ENT had a spot open today so we popped in.  He did see fluid in my girl's ears, and believes that to be the reason for her poor hearing test.  He immediately recommended tubes and an adenoidectomy but I'm on the fence.  The fluid might resolve, since she does have a cold.  Let's not go poking unnecessary holes in body parts.  But she's also had a cold off & on since she started daycare a year ago - the fluid might never resolve.  Let's fix her hearing NOW so she can understand the words we want her to start saying.  Could she have had fluid filled but asymptomatic/non-infected ears for a year?  gah.  I need to read up on the adenoidectomy more but I missed the part where it Cures Everything!  Let's not go lopping off body parts without reason.  Also, the ENT seemed to jump on the "kids with Ds usually end up with ear tubes" train which rubbed me the wrong way... my big girl actually has petite tonsils and decent sized ear canals, so let's look at THIS patient,  not every other kid with a 47th chromosome, m'kay? 

Side note:  I left the ENT's office feeling a little jumpy and it wasn't till we nearly got home did I realize it was adrenaline.  I had swung into full crisis mode over her hearing and showed up to a bridge party.  Funny.  Or not. 

Also, in a bonus two-fer, we got to the hospital early enough to get into radiology before the ENT.  Oh my - that was completely painless!  We were in & out in 10 minutes. There's a teensy tiny chance I may have over-built that in my head.  Maybe next time we'll consider sedating mommy instead of her weirdly cooperative child?  And our ped was already calling with the results by the time we got home - She said there's no instability in her neck but the radiologist saw "something" and couldn't answer my ped's questions (which the ped freely shared her opinion about), so they're sending the films over to neuro-radiology at the children's hospital.  Love her! 

Because the Xray was so fast, we ended up with almost an hour to kill before the ENT so we got a snack, bought a sample size tube of vaseline for $4 (the omni-chapped cheeks have returned with fall!),  and wandered around.  93% of the people we passed smiled at my girl.  She was chattering away, looking at everything & everyone while holding onto my pinkie - the epitome of adorableness.  We wandered by the peri-natal clinic where I first found out she had an extra chromosome.  I felt... light.  I half-hoped someone would come out as we strolled by and see a mom & her girl, getting some stuff taken care of, but content and together.  And maybe they would see her yummy almond eyes and realize that whatever they'd just heard inside those doors was not the tsunami of darkness they thought it was.  They could still stay on the beach and play.  And laugh.  And have someone hold their pinkie.

Monday, October 24, 2011

18/ 31 for 21 Brothers & Sisters

I ran STL’s Rock ‘n Roll half marathon on Sunday.  Cut 5 minutes off my time which is good, but my first two races were hilly, this was almost completely flat & the weather was perfect so I’d be lying if I wasn’t hoping I would’ve gone a bit faster.  Let's blame my (barely noticable) cold and not my recent slacker training. 

With the exception of the bib pick-up (which was a cluster___k of epic proportions – it was set up in the same convention center at the same time as tryouts for America’s Got Talent.  Sadly I had the kids with me so couldn’t take the time to try out.  My special skill?  I can whistle The Boxer.  I know how disappointed y'all are you won’t be seeing that on your TVs any time soon) … the race itself was beautifully organized.  Lots of support, swag, & an amazing number of people rooting us on from the sidelines.  Bizarrely, I could have done without the bands along the race route, nevermind they were the focus of the entire event, but it was a big high to run with so many other people. There were 21,000 runners – get that many people on the street and even I, at my turtle-like pace, was passing people, so bonus ego bump.

My brother came into town to run too and we snuck out Saturday night to see Contagion.  In case you’re wondering, I would not recommend seeing a movie about an easily transmitted deadly virus 12 hours before running in close quarters with 21,000 sweaty, sweaty people.  Just a thought.

Also - the race was to raise money for TASK – Team Activities for Special Kids so, yeah!, personal interest!  [I don’t know anything about the group so can’t vouch for it, but looks like we’re their target family]

On a not-unrelated note, our Gigi lost her older sister on Friday.  The only one of her 3 siblings to have passed away.  I don’t want to take liberties and write about my great aunt here, but Gigi has told us some funny, funny stories over the years.  When we see her next week, maybe I’ll ask if she wants to share any and I can fact check the stories I remember.  The four of them always struck me as incredibly close – even despite geography and, between sisters, political divides, they still talked all the time.  My brother and sister and I have had our spats, but I can always count on them to show up for stuff – races, babies, races, Monday morning emails, races, and drive time phone calls.  I only hope we’re (still) as close when we’re in our 90s.  I hope to be as close to the younger two too, though they’ll still be lollygagging behind in their 70s.  My Gigi is a rock and not prone to sentimental displays, but I hope she knows how much we love her & how sorry we are she lost her sister. 
xoxoxoxo, k.

Friday, October 21, 2011

17/31 for 21 Hilarity Ensues

Venting (like my last post) can be terrifically cathartic.  So can everything getting worse, causing you to wistfully long for the misery that was Wednesday.  I'm weirdly chipper today though and damn if I have the faintest idea as to why.

~  I worked VERY late last night so had a fleeting feeling of job satisfaction.  Or at least I no longer felt like my voicemail could explode, sending bits of shrapnel into my eyes. 

~ Then I got up early to get some time in before a slew of appointments only to have Matt call me as I'm parking (after a 45 minute drive, mind you) to tell me he completely threw out his back and I had to come home.  He then made a series of sad, sad phone calls, checking on my rescue effort drive.  I nobly refrained from comparing his backpain to childbirth.  Best part of being the girl in this coupling is that I will always have the trumpcard - but figured silence was the better part of valor.  Aren't I nice?  The best call of the bunch was #4 or 5, when he announced he'd managed to get off the floor - only because all three dogs got inside and were trying to play with him.  Our dogs resemble the pack in A Christmas Story a lot more than Lassie - imagine a football pile with slobbery tongues, twice the legs, and no personal boundaries.

~ On my way home I got a ticket. WELL, OF COURSE I did.  The cop said my registration was 21 days past due - I imagine my expression read something along the lines of, "21 days?  That's it?  Whaddya say we meet back here in four months when it's REALLY late?"   He asked if there was any reason for the oversight.  "Yes, yes there is.  How much time do you have?  Can I direct you to my blogger account?  That provides a detailed account of our current train-wreckedness".   Instead I just pointed to the empty car seat/booster - "Two kids".   He didn't think I was very funny, but he didn't cite me for being uninsured (which I'm NOT, just for the record), despite not being able to find an insurance card that didn't pre-date said children.

~ I got home, dug out some meds leftover from my C-section for Matt (did not refrain from getting in little dig about childbirth), helped him to bed, and took my girl to her 3 year check up....

~ wherein we received referrals for a sleep study, neck Xray, new orthotics, new labs, maybe a new GI guy if her, um, issues don't resolve, and an ENT because she failed her 3 year old hearing test (surprise!), and a specialty pediatric dentist.  If her mommy is really really creative and pushy, four of these items can be addressed in ONE visit while sedated (after the requisite co-pay sucking office visits where they'll confirm they need step 2 done under sedation.  Oops, that may sound a bit cynical.).  Our ped wasn't sure if the AAI film needed to be done upright which might rule out sedation - but the chances of them getting a clear shot of Tigger if she's awake are minuscule.  (Though I just googled and it doesn't look like they normally sedate, so who knows?).

She'll have to be sedated anyway for an ABR for her hearing which is really, really just awesome.  Did not see that one coming.  She passed her newborn screening, she's only had one ear infection (and I thought that diagnosis was questionable), and her ears looked clear today so it's not a temporary cold/fluid thing.  I might be jumping the gun a bit - she might get into a testing room & love the toys & lights - but the nerd in me thinks the wires attached to her brain would produce more definitive results.  We talked about her hearing at her IEP but since she hasn't been prone to ear infections, and she reacts to what's going on... I don't know.  I'm assuming any issues are on the mild side (jinx), but what if they're just mild enough to hear the garage door but not the difference between 'eat' and 'ear'?  What if her speech issues are hearing related and not (just) developmental?  Right now, definitive results sound good.

~  Funny was the pediatrician & nurse reacting to the omnipresent teeth grinding - it barely registers with me any more.  She has refused to let our family DDS look inside her mouth, so if we do have to go the sedation route it would be nice for someone to get a look inside and tell us how much damage all that grinding is doing.

~ After the appointment we stopped in a sandwich shop where my girl raced for a table, all by herself.  She seemed  like such a big girl and was so content, I let her sit there by herself while I waited in line  (I was only 6' away).  She busied herself flirting with the guys one table over - young too-cool hipster types - who could not have been cuter with her, smiling and waving back. 

~ It seems I've done a lot of whining this month and not so much awareness and advocacy.  So let me point out that sandwiched between appointments and medical referrals, bad backs and mommy tracks is a beautiful little girl who can make even the hipster dudes tear themselves away from their iphones and smile.  Who could resist this face?  We are sosososososoSO very lucky. 
From July'11

Wednesday, October 19, 2011

16/31 for 21 A thousand tiny drops

Today was not a great day.  Please excuse the venting to follow.  Or just preserve whatever shreds of sanctity and bliss you possess & skip this altogether.  I'm sure tomorrow will be better.  I hope.  How much worse could it be? 


Remember this post, where I proudly announced I had the BEST insurance company in the world?  Alas, it was not to be.  I've been calling providers and gleefully sharing that I had the BEST coverage ever and to please do tell me about your speech therapists so that I may gift you with my patronage and the largess of my major medical coverage.  One was going to check billing since there were in & out of network/geographical issues. They called back and said UHC (that's right, UHC - I'm talking about YOU) wouldn't cover speech absent stroke, trauma, blah, blah, blah....

Now this is what I had initially thought. So in theory we only took a small week-long detour to happy land.  But the rep today (when I called UHC back) was slightly smarmy when she pointed out where on the webpage it listed the endless preconditions and qualifiers (in my defense, it required about 19 click-throughs to get there).  And then I got mad.  Seething, seeing-red furious.  Not only had I called with a specific benefits question, mentioning WHY my daughter needed it, to which I received an easy, Yes! That's covered!,  I then followed up IN WRITING, asking about the geographic issues and hey, by the way, can you confirm I didn't misunderstand, my girl gets 60 visits a year?  Yessirree, 60 visits!

The rep today became much nicer after I said I wanted to lodge a formal complaint.  The supervisor called me later to apologize and said she had "some coaching to do".  No shit.  The words "callously ignorant", "cruel", and "blithely incompetent" were uttered.  The guy that sits near me might have heard me.  I threw in "cruel" just because I had gotten my hopes up.  I knew it was too good to be true but I'd confirmed it twice.  And why not a bit of good luck?  But no.  Whatareyagonnado?

For all my insurance geeks out there, no estoppel argument - even if it ever applies in health care (questionable) - no detrimental reliance.  Meaning at least we haven't racked up 15 newly-uninsured visits.  Unless you count a few ignorantly happy phone calls and my crushed soul, we're not out of pocket. 

On top of that, my girl spent today with her grandparents because she was kicked out of daycare AGAIN.  Her pediatrician sent a note saying she'd been tested & cleared (for the obvious stuff).  Daycare said they wanted a note saying she wasn't contagious - the ped's office asked them to clarify what exactly they wanted ruled out since even I've watched enough House & ER to know you can't test for EVERYTHING.  I mean, can we all agree than testing for malaria and dengue fever is unnecessary?  Is anyone still worried about West Nile or the Swine flu?  The daycare never responded.  And, no, I wasn't quite so sarcastic when I asked. 

Aaannnddd I made the strategic error of cc'ing the school nurse, by way of explanation for yet another absence, and the school nurse sent me back an email intended for the head nurse wherein she suggested even a note from the doctor wasn't enough since "we can't confirm the culture was done".  Really?  Do you think I'm slipping the pediatrician a fiver to draft fraudulent notes?  The nurse didn't respond to my last email either, in which I (nicely!) requested guidance on what they wanted us to test for and since you cc'd me on the other note in error, I'm gathering you want a copy of the lab results too?

My error was that they hadn't really been aware there was a FIVE WEEK long GI issue since it hadn't come, er, up at school, only at daycare.  So now the school is being squeamish too. 

Not that I can really blame them.  I mean, who wants to change that diaper?  But she's clearly not contagious and... am I supposed to take a 6 week leave of absence to handle a non-viral diaper issue?  I'm serious.  I am at a complete loss as to the rules here. 

So there were a dozen phone calls back and forth today about my family issues and not so many about work stuff.  I showed up late this morning and left early to deposit & collect her from her grandparents' house.  Her previously thrice-moved 3 year check up is Friday morning and my son's parent teacher conference is Friday afternoon so I was going to take the day off to attend both.  But we were also going to go visit Gigi in November since my son has fall break anyway, and who thinks they can take a gazillion half days, push the flex time so hard it cracks, and then go on vacation?  No one has said a word to either me or Matt and I technically have loads of time but...  it seems like too much.  Is this just definition Mommy track? 

Aaannndd, adding fuel to the swirling depths (is it me, or does everything sound like a potty joke?) of self-pity, I have a cold (which also reminds me we're probably just going to transition from GI issues to a series of winter colds & fevers).  I'm hoping I might have handled this with a bit more grace & dignity if I didn't feel my head were severed & floating in a sea of cotton balls.  Maybe not. 

I wonder if UHC covers severed body parts.

Tuesday, October 18, 2011

15/31 for 21 T.W.E.L.V.E

Well this daily blogging thing isn't working out so well but there's always hope I can rally at the end, right?  I don't have much to say tonight because I am once again, as always, T.I.R.E.D so just a quick note from this weekend:

Matt and I celebrated our 12th wedding anniversary on Saturday.  I was talking to a 26 year old on Friday, mentioned our weekend plans and the occasion, and she expressed a total lack of comprehension (and maybe a little horror).  She was 14 when we got married - now she has a college degree and a full time job.  12 years is a very long time.

We moved to Matt's hometown when I was 6 months pregnant with my son.  Matt was ready to leave his old job, there was a spot open I wanted, and we jumped, leaving my beloved California behind but never thinking there was a bloody chance in hell we'd stay here permanently.  Seven years later, it's home.

After we moved, my new OB told us we'd hit almost all the major life stressors a couple can hit in under a year:  loss of a baby, loss of a job (even if voluntarily), new job (mine), roll reversal (stay at home dad!), and a big move.  Ha!  Little did he know!  The baby he delivered shortly thereafter didn't stop screaming for the next 9 months.  Then three years later our daughter was born with special needs, we faced major health concerns (heart surgery!), severe financial duress, and another new job (Matt's).  If most marriages are marathons, ours is like the Iron Man - you might have run 26 miles but, surprise!, you still have 114 miles to go.  Maybe even the Iron Man where they take you out if you slow down, like that Stephen King story. 

Though that might be a little grim.  This guy can drive me INSANE, but when I think back over the last 12 years I mostly remember the hugs, the laughing - even if it occasionally veers off into bitter chuckles or anxious giggles - and holding his hand. 

There's a statistic floating around that couples who parent a baby with Down syndrome actually have a lower divorce rate than average.  I can see that - my daughter lights up a room and could make Ebenezer Scrooge grin.  Who could argue about the dishes when there are babies to dance with?  But even though this is Down syndrome awareness month, and even though all (a-hem) my posts this month are dedicated to my daughter, even if tangentially, this one thing - these twelve years - are all ours.

So much laughter and love.  I cannot fathom my life without you.  Happy Anniversary, baby.
Someone take a decent picture of us, please!

Sunday, October 16, 2011

14/31 for 21 Filler

Silly girl!  Triple
booked the weekend, so no clean
clothes / posts.  Happy tired.
Who is that crazy photo bomber?

Friday, October 14, 2011

13/31 for 21 Punctuality

Lucky 13?  Apparently not for me today- no one look at the publish date, m'kay?  These are some photos from my son's last day of summer.  It was a Monday, school started on Tuesday.  I took a day off work so we could go to the zoo and cram one more bit of freedom in before we returned to the navy uniforms - just mommy and her boy. 

He spent most of our trip admiring the ongoing construction and not so much the exotic creatures. I suppose cranes can serve double duty, right?
So close!  Just an inch off.  Uncle Pete calls that construction tolerance.
There's a Slitherens joke in there somewhere.

Happy Days.

Wednesday, October 12, 2011

12/31 for 21 Doctor Google

Matt took our princess to the doctor today.  She'd been banned from daycare again, so might as well, right?  Nothing else to do.  I'm normally enough of a control freak to have wanted to take her in myself but I stayed home with her last Wednesday, when she was previously banned.  [Which is why I worked late the rest of the week - I guess I hadn't explained that.  Lateness was a necessity, not some freakish inability to pry myself away from my desk].

Matt was very careful to relay both our perceived timelines (Me:  a month, since the BBQ race.  Him:  a couple weeks?) and he diligently reported the results of my visit to Dr Google to the guy with the real diploma.  The doctor was reportedly reassuring and managed to talk us me off the ceiling about sudden onset celiac disease.  He agreed it can happen, and those with Ds are more susceptible, but it's much more likely that her, um, issues are just taking their own bloody sweet time to resolve (oops, not bloody. NO BLOOD.  No one panic!).  Especially since everyone else in the family had some tummy issues right around the time this started.  That is House-like diagnostic work, right there.  He said that it actually NORMAL for diarrhea (sorry, I was trying to avoid writing that word.  Even the letters skeeve me out) to last up to SIX WEEKS.  6!!  That's just nasty.

Incidentally, our regular pediatrician was out so we saw the same guy who sent us to the hospital for RSV this past February.  The same guy who had told me I was starving my baby when I was struggling to nurse The Boy.  Maybe he didn't phrase it quite that way but that's what I heard - I was also well past the point of sleep deprivation psychosis at the time, so my memories might be a bit fuzzy.  Anyway, he's grown on me.  Water under the bridge.  (Even that metaphor sounds gross right now)

So, unpleasant, but not life-altering.  If my daughter suddenly couldn't eat wheat, we'd manage because you gotta do what you gotta do, but that would have added some highly unwelcome complications.  Big collective sigh.

Tuesday, October 11, 2011

11/31 for 21 Eleven Things

11 Things about my daughter:
1.  She has two middle names, as does her brother, and both uncles. My sisters and I only have one apiece.  Hurrumph.  The extra initial online(krlR) is courtesy of my husband (though not legally applicable) - I might be suffering from residual childhood jealousy.  Dad said he didn't think about it till later. 
2.  Her favorite songs are 5 little monkeys in a tree, Twinkle Twinkle, Row Row Row Your Boat, and Ring around the Rosie.
3.  I did not teach her Ring around the Rosie, because I once heard it was about the Black Plague and so I always considered it a little morbid.  Nonetheless, she's very cute as she very carefully falls down.
4.  She loves playing with my hair but is getting a little aggressive about undoing my ponytails.  Man, that hurts.
5.  She's had 3 surgeries:  one on her heart and two on her eyes.  We're hoping she doesn't make 4.
6.  She's sick again.  I don't think a mommy blog is a mommy blog till you talk about poop, but I don't really have the constitution for it right now (ha!).  I am just befuddled by the lack of other symptoms and the sporadic, occasional nature of it.  She's seeing her pediatrician tomorrow.  I will NOT consult Dr. Google.
7a.  Her favorite books are The Bear Snores On (Karma Wilson), Moo, Baa, LaLaLa, Blue Hat Green Hat, But Not the Hippopotamus (all Sandra Boynton), two books by Kate Toms, Goodnight Moon, and The Big Red Barn.  She likes other books too but will occasionally, randomly reject them.  These are sure things.  She anticipates a lot of the 'action' scenes & sort of signs along with me. 
7b.  I have not come up with a good way to sign & read to her at the same time, since she insists on sitting in my lap (facing the book & away from me).  I figure the snuggling and reading-while-pointing to things is also developmentally important. 
7c.  Not that my signing is a good translation anyway.  I mostly hit the key words I've remembered to look up.
7c.  Sometimes I just want to read and snuggle with her and not worry about the other stuff. 
8.  She can't isolate her pinkie finger yet so when she signs "what's wrong", "telephone", or "play", she uses her index and thumb instead.  I find this marvelously scrappy of her. 
9.  She is, however, getting her pinkie halfway up when she signs "I love you".  I find this marvelously endearing. 
10.  She's starting to stomp her feet when she gets mad.  This is only a little bit endearing. 
11.  When she gets home at the end of the day, she immediately requests Signing Time and will watch it till dinner's ready.  This is a massive improvement over earlier when she would stand in the middle of the kitchen and cry till dinner was ready. 

[I just checked Dr. Google.  I should not have done that.  CRAP!]

Monday, October 10, 2011

10/31 for 21 A Supernova of Sunshine

I don't think it'll be a surprise to anyone reading that I have morose streak.  Nothing requiring medication, just a dark side that I occasionally have to sate with my DVR, chocolate, carbs, and red wine.  Running helps, but that's not as fun as chocolate (though it does allow for more chocolate).  So when I call myself a little ray of sunshine, which I'll admit I am wont to do, it is with a massive sense of irony.  There is no irony in tonite's title. 


I haven't pulled together all my thoughts about the school post that I've been wanting to write.  Too many issues playing into it - our schedule, my girl's health issues, her signing, my signing, our absurd parental lapses, etc, etc, etc.  It was going to be a lot of logistics & not much fun to read.  So, instead of presenting this in a logical format, I think I'll dribble it out of a couple days.  After all, today is only Day #10.  There are 21 more days to go! 

One of the the things - actually THE THING - is that my daughter is non-verbal.  Still non-verbal. She has never called me mom.  She signs a LOT.  And she is picking up new signs faster and faster.  Faster, in fact, than I am.  I should take an ASL class.  I haven't.  Squeezing that in would be hard - not impossible, but not dropping-by-the-store-on-the-way-home easy.  Cue guilt.  Matt, much as I adore him (12 year anniversary this week!), is a glass half full kinda guy and thinks it will all magically work itself out.  Proof that opposites attract.  He has not been as enthusiastic about ASL as I've been (massive understatement).   Cue... something. 

And, in full disclosure, even I don't think she'll remain non-verbal.  She babbles, constantly.  She'll be completely quiet in her room but if I come in she lights up and starts telling me all her fantastic stories, in baby-speak.  She'll repeat sounds back -  she says "eeeee" when it's time to eat, or when I ask where her ear is, something approximating "zzzzz" when zipping up her PJs and I think her receptive language is oookkaaayy, but it's all at a very basic level. 

I saw a post today, courtesy of the 31 for 21 challenge (sorry, don't remember where), with a standard Ds developmental chart.  I'm long over comparing to typical kids, if I ever did, but we are now on the far end of speech for the *Ds* chart.  She only got 90 minutes a week of speech in her IEP.  We're clearly not doing enough at home, and I think she needs more at school.  I don't think the last year of speech therapy was effective (our first SLP was focused on the talking part and not so much ASL, feeding into Matt's aversion - I think the vocabulary needed to come first, the understanding that things have names and using them results in fun things like milk, dinner, and kisses).  Also, she's starting to get frustrated when we don't understand what she wants and I don't want her verbal skills to impact her behavior - but I'll save that for another night.

Anyway, seeing that chart snapped me to attention. I've been moping about, idly wondering how we're going to cover extra speech in near-Eeyore like fashion.  No.  WE ARE GOING TO FIX THIS RIGHT NOW.  So I called our health insurance provider, wondering what sorts of sadness merit speech therapy and who I'd have to bribe to get a "better" diagnosis.  (I won't share what I was prepared to do so you don't judge).  I was under the impression they wouldn't pay for it, because it's covered by the school, not a traumatic injury, some other reason dredged up from the murky depths of my half empty soul, but instead.... (sorry for all the caps) OH MY, HOLY $%^&*(%!!!! 

60 visits a year.  $20 copay.  No referral needed.  SIXTY VISITS A YEAR.  How many weeks in a year? Oh, that's right, LESS than 60!  That's 1.15 sessions/week.  We have been paying for the premium coverage but still felt dragged under by the bottomless annual family deductible(s).  This makes it all ok.  I'm not ashamed to tell you that after getting off the phone, there were great stomach-heaving silent sobs.  Luckily my office space is pretty private.  What a tremendous, tremendous relief. 

Also?  How much time did I just waste with my asinine assumptions?  A year.  Maybe a year and a half.  One third of her life.  !#$%^&*()%^  Guilt doesn't even begin to cover that. 

[Just to temper my giddiness, this won't be in home.  It won't even be within 20 miles of home.  We might even spend more in gas then we would have on private in home therapy, but a giant PFFFFTTTT to all that tonight.  Tonite? We dance!]

9/31 for 21 Maude, A Dog Story

This is Maude.  We adopted her about 5 years ago.  I saw a picture of her beautiful face on the Humane Society webpage and she reminded me of my handsome, handsome dog Max so I drove over to meet her.  When I saw her in person, however, I gasped a little.  She has short legs and a body like a tootsie roll. Like a Rottweiler-Dachshund mix.  She has half a tail - not 'docked' (not that that would have been OK either), but a tail stump, as if it had been amputated at mid-point.  The Humane Society had nicknamed her 'Princess' (I believe ironically).  Let's just say she wasn't going to win Westminster.  Despite this, she was a very, very sweet dog.  After some begging, bargaining, & negotiating, Matt reluctantly took our son over to meet her.  We already had 2 dogs.  Maude would be #3.  What kind of nutjobs have 3 dogs with a one year old in the house?  But when he went into the 'meet & greet' room she came over, leaned against his leg, and put her head on his knee.  Matt was smitten.  Also, who else was going to take a half-tailed stumpy Rott mix? 

She had a couple seizures when we first got her and we eventually figured out she had a thyroid condition, for which she gets twice daily pills.  She also has a non-specific eating disorder.  She moans when it's time to eat and, on a couple occasions when we've forgotten to close the pantry door, has literally eaten herself sick.  She regularly swipes whole loaves of bread & sticks of butter, like most dogs, but she also likes paper towels, the kids' art projects, kitchen towels, and my girl's shirts, if we forget to put a bib on her (my daughter, not the dog).  Maude will actually EAT the shirt.  You'd think we'd learn to keep the laundry away from her.  Maude, by the way, is short for Marauder, not the Bea Arthur show, though she can be a grumpy old lady too. 

Maude's favorite things, after food, are car rides, walks, and sleeping in the back crook of your knee.  She also has a lovely deep bark which helps scare away solicitors and Scary People.  She will not fetch. Anything.  We think she might have been abused because when she first arrived she would cower and hide if Matt & I were "discussing" anything.  I think she trusts us now since not only will she not run off to hide, I can almost see her little doggie eyes rolling.  Just kiss & make up already!

She is also my daughter's favorite dog.  Because she has soft fur and will lay quietly under toddler fingers. 
May 2009.  Don't worry, she didn't eat the dog.
And please ignore my toe.  It's too late to crop old photos.

They told us she was probably 5-6 years old when we found her 5 years ago.  She tore her doggie ACL a while back but seems to have recovered.  It doesn't stop her from climbing into my lap (all 65# of her) to remind me about her dinner, or keep her from exploring the counters, or twirling madly if she thinks she's going for a walk.  I found a big lump on her side a few weeks ago.  It's either nothing, as several other small ones have been, or Everything.  I haven't called the vet yet because what are they going to do?  She's not in pain, and we're not going to operate on a 10-11 year old dog to remove a tumor, cancerous or not.  But I might also just be in denial & hoping it goes away.  I might also leave a couple extra treats on the counter for her to find. 

Saturday, October 8, 2011

8/31 for 21 The Summer List

Daddy, taking one for the team,
and for the sake of compulsive list makers everywhere.
Believe it or not, this was the best shot of 10.
We've actually done pretty well, though the fireflies have sadly left already - we'll have to do that twice next year.  And we'll have to focus on getting the jumpy house up before it snows.  [Please note my son's editorial corrections:  Lower case "j", mom!  Sadly, he did not notice or correct my spelling of cinnamon].  The museums will be perfect for late fall rainy weekends and my dear friend d. actually thought the giant bottle of ketchup sounded like fun.  Though she thinks we should wait till the giant bottle of ketchup FESTIVAL.  Which is exactly why she's so awesome.    

If I were really mom of the year I'd get up at 4am tomorrow to make yeast bread for post-camping cinnamon rolls but don't you think it would it be so much MORE fun if we dragged that bit out till, say, 2013?  The anticipation makes them sweeter.  Since I doubt anyone reading thinks I have a shred of domestic skill - my first "real" job was at Cinnabon's arch and now-defunct rival, so I can make them in theory.  It's been a couple decades years.

Friday, October 7, 2011

7/31 for 21 Smorgasbords & Hors d'ouevres.

I worked late again tonite and got home at 9.
NINE.  That's crazy.  I just do not know how to cram the 60-80 hrs/week necessary into the 40 hours that's reasonable.

My husband is watching the Cardinals in game 5 of 5 in the playoffs and is muttering under his breath and at the TV, and occasionally pacing.  I asked what inning it was like a silly girl and he snarled, "Just don't talk to me right now".  He's not usually like that.

My son is asleep on the couch, next to his daddy.
He went to Dairy Queen today and got a milkshake, half of which he saved in the freezer for tomorrow (how many 6 yrs do that?  *I* can't do that!).  He ordered a pumpkin milkshake because Matt told him it would be safe because Mommy doesn't like pumpkin.  Twerp.  Fall can be difficult that way.

Matt said he's found my daughter in the cubby of her bookcase two mornings in a row now.
I'll try to get a picture tomorrow.  I have a post in the works about school and will try to get it down this weekend (hint:  it's better!)

I was recently lamenting about keeping up with this 31 for 21 thing and said I was going to resort to haikus and Bartlett's Familiar Quotations soon.  I was totally joking at the time but....

So Bartlett's index for "down" is more effort to explore than I'm prepared to exert right now but I turned to the page of my girl's birthday instead and it was perfect: 

First, Gene Fowler:  Writing is easy. All you do is stare at a blank [screen] until drops of blood form on your forehead. 

Second, multiple quotes from Charles de Gaulle, who also had a daughter with Down syndrome.  Serendipity, defined.  This post, from Patricia Bauer's now quiet blog, was one of the first I read after learning about my daughter's little extra.  It has always stayed with me.  It ends with:

This young woman’s life was a constant reminder of the dignity and value of vulnerable people, a message delivered like an arrow to the heart of one of the twentieth century’s most influential men. I would like to think that Charles de Gaulle may have found in Anne an exhortation to stand up for what is right in the face of overwhelming public ignorance and cruelty. Perhaps, just perhaps, she helped to change the course of history.
[The permalink doesn't seem to be working, so I set it up under 'history' tab. Date of the original post was 6/4/07]

[Oh and we won!  Turns out this is a BIG DEAL!  Love the Pujols]

Thursday, October 6, 2011

6/31 for 21 Insurance Geek

This has absolutely nothing to do with Down syndrome, or my charming family, but when I'm not with them I'm usually at work, so it is slightly related, in the negative.

I stayed late at work tonight because I had to finish a mind-numbingly dull & remedial continuing ed course on-line.  The fact that I found the quiz questions below hysterically funny is a sign that I -
  A/ Worked too late
  B/ Drank too much coffee
  C/ Found my niche in life with other geeky insurance people who are weirdly amused by inane turns of phrase (turn of phrases?) and homophones.  

For example: 
"...ABC Company hosted a champagne New Year's Eve party for their employees and guests.  One underage guest partook of too many tiny bubbles...."

...John got in a argument with another customer over the last doughnut at a bakery and accidentally knocked over a tray of expensive hazelnut pastries.  John's actions are
  A/ An intentional tort
  B/ An unintentional tort
  C/ A hazelnut torte

A tort is a civil wrong; a torte should involve vanilla ice cream, Breyers, preferably
but if you don't have it then just whipped cream but only if it's real; if it's out of the can then nothing.  (that's for Cate & her superior pop culture skills)

Also, since we're on the subject, I'm going to put this out there into the universe:
  ~ Cars have brakes; hourly employees take breaks.
  ~ Plaintiff counsel went to law school (hopefully, apparently not always);
   the town council vetoed the new park.

Wednesday, October 5, 2011

5/31 for 21 Previously Unposted Pile On!

Because it's late.  And because these make my heart all warm & smile-y.

Nice hair, mom!  You couldn't bother yourself to find a comb for me?  

And one more in case that was too much schmaltz for you - 
This is my son, about to throw all 57# of himself onto his father.
Don't worry, Matt recovered.

Tuesday, October 4, 2011

4/31 for 21 I would have preferred to go without the food.

A retired speech pathologist recently offered to do some screening at my son's (Catholic) school.  I was tickled about this because word on the street was she was SEMI-retired and I had a little fantasy running she'd volunteer to provide us some top rate in-home speech therapy at a specially discounted co-parishioner rate, just because she thought my daughter was cute and because the universe felt bad I'd otherwise have to give up eating to cover it (maybe that was the universe telling me something else?) 

Silly me.  Not only do I still not have the nice lady's phone number, I also now have a 3 line referral to the public school system's special ed department for "further evaluation" of some speech "weaknesses" she found when chatting with my son.  My son

I can't decide if I should laugh or cry. 

Lest anyone get overly concerned, *I* am not.  The kid has a better vocabulary and speaks clearer than half the adults I deal with during the day.  If they want to work on his "R"s or whatever else I'm too schleppy of a mom to have noticed, then boo-yah.  He's doing great in school (though parent teacher conferences are in 2 weeks.  Stay tuned!  Surely there are more fun surprises waiting!).  The fact that they're going to offer speech therapy to my son but I can't get more than 90 minutes a week for my non-verbal 3 year old is just....  AWESOME. 

On a bright note, at least we already know where the special ed offices are. 

Monday, October 3, 2011

3/31 for 21 Coming Home

My extravagant second-night-out-in-a-row on Friday was Bunco with the neighborhood ladies.  When I first moved to the mid-western suburbs this struck me as mockably anachronistic and, well, lame as a Tupperware party.  A "dry" afternoon Tupperware party in the 1950s with pearls, cucumber sandwiches, and twin sets - little did I know they were more swingin' 60s parties with too many martinis.  (Or, this week, cosmos.)  And don't tell Matt, but we end up actually playing dice thisclose to never.  I love my gals & my night out but... BUT... with the exception of one other mom who rarely comes, I'm the only mom gifted with IEP meetings.  And on Friday, when talk turned to Homecoming and how much money was appropriate to spend on up-dos, and dress straps and hem lengths, and IwouldNeverLetMYdaughter WearTHAT!, I wanted to be about 4000 miles away.  Because I just don't know. 

I don't know if my daughter will be loved and cherished and welcomed - or if mean tween girls anxious over fitting in despite their first and only zit will lash out at someone else, my girl, in a Darwinesque grasp for a higher rung on the social ladder and if that will dampen her joy and make school some hellish Lord of the Flies reenactment.  I don't know if all the other moms out there will teach their children to be kind, as my favorite neighbor is.  My neighbor who was surprised when I grew quiet and shot her a look because of course my daughter is going to go to Homecoming.   But she doesn't see the occasional hard eyes at the park from the girls who are almost, maybe just a year or two away, from being too old for silly things like slides & swings.  I don't know.

But I do know that when I picked up my daughter tonight, and she ran over to me as fast as her little legs could run, arms up in anticipation, and as she started telling me all about her day in her excited babble that she hasn't yet translated into English, and later when she started laughing and rocking out in the car to a song completely inappropriate for children, my headache disappeared and I was happy.  And then we were home.

Sunday, October 2, 2011

2/31 for 21 Cheater Post

Only the second night and already slacking!  It was a good weekend - blueberry pancakes, time with the cousins, laundry, and I even broke out the vacuum cleaner (I only used it in one room but no need to get sucked up in the details).  I even spent an unheard of TWO nights out with friends, on Thursday and Friday.  Such a decadent life I lead! 

Today we went to the park but I was lazy with the camera.  This one would have been cute, had it been in focus:

And a couple more.  Slightly bedragged "park hair".  It was hyper cute 20 minutes earlier, I swear.
Surprised at the rocking bench
She's getting so big.  She climbed up the straight ladder today at the park, mostly by herself.  And she's now officially in a toddler bed.  Which she refuses to actually sleep in so we'll move her sleeping hulk off the floor several times during the night.  We never hear any thuds though, which we attributed to the giant stuffed monkey next to her bed but tonight she confirmed my suspicions when I returned to her room exactly 63 seconds after putting her to bed to find her already on the floor - she lays down nicely, smiles at me as I leave, then scurries over to the door & tries to look thru the crack at the bottom to keep tabs on those with later bedtimes. Delightfully sneaky, she is.

Saturday, October 1, 2011

1/31 for 21. Uniting Ways

Everyone I know online already knows this but for the family, both honorary & traditional, October is Down Syndrome awareness month.  Five years ago Tricia started 31 for 21, wherein intrepid bloggers will write *gulp* daily to raise awareness & participate in the general revelry.  31 days for trisomy 21.  Given my current output this will require, um, a commitment but anything for the kids, right?

And speaking of anything for the kids...

I made a video. 

Yes, go ahead & pick yourselves up off the floor.  My camera shyness is legend but I was briefly able to get over myself and I made a video for my employer's United Way campaign.  They are big (BIG!) United Way supporters and a bunch of months ago someone sent out an email asking if anyone knew or used any of their member agencies.  They caught me at the right moment (i.e. busy shirking my duties on a Friday afternoon) so I shot back a note raving about my girl's inclusive daycare center, which receives some UW funding.  A while later they circled back around (am resisting the temptation to compare the nice PR people to sharks) and asked if I'd be willing to talk about them more. 
   "On video?" 
   "For the company-wide UW campaign?" 
   "Don't worry," they said, "if it's a trainwreck we won't air it." 
   [maybe not their exact words] 

Those PR people - they're convincing like that.  So in the middle of this summer's heatwave I drove over to a different building, then walked to a third building.  In the heatwave.  And because they normally keep the AC cranked for the computers I was wearing a sweater.  Did I mention the heatwave?  There may have been a wee bit of perspiration.  Then they put me in a teensy tiny room and turned on a baseball field's worth of lights, resulting in a wee bit more than a wee bit of perspiration.  And while I work for a very large corporation which places a great deal of emphasis on their UW participation, the homemade employee endorsements were, at best, a trial run (ha!) and did not merit professional hair & make up people.

So I managed to ramble on a bit about important concepts like inclusion and opportunity and our fabulous day care, all the while trying not to worry about how shiny my forehead was and the status of my lipstick.  They later added in soft music, a great montage of my girl's best photos, and they did a nice job editing out all the ummms and ahhhhs (and the baseball lights did a surprisingly brilliant job of hiding my other chin).  When it eventually aired on the internal website I had more or less moved passed the hand-flapping, hyperventilating, OMG! EVERYONE CAN SEEEEEEE ME!! stage.  I got a couple of nice emails - and then there was one slightly awkward conversation which was more meh, than blog-worthy, but you never know - it might be a long month.  I don't actually think that many people took the time to watch it.  Anyway, the point was I got out there & did it.  So if I can do THAT, surely I can sit my butt down at the computer slightly (ha!) more often this month.  For the kids, right? 

[And sorry, but no - blogger won't let me make a single post private, there may be some company property/copywrite thingies, it's WAY too much info for the internets (employer + school)... but mostly?  unlike the majority of my co-workers, I'd worry y'all would actually WATCH it (the horror!) and I'm not quite that brave.  But kisses anyway.]