Monday, July 28, 2014

The Cautious Child: Down Syndrome, or Only Child Syndrome?



Gregarious to a fault, loved and supported constantly and unconditionally by family and peers, smart, funny, outgoing.  Graced with an extra chromosome, something that fills my head with images of people who are easily found on the dance floor, as a member of a cheerleading squad, an active participant in Special Olympics, loving baseball, soccer, ballet, swimming, face time in the spotlight of all things fun.

The formula would suggest self-confidence, a willingness to learn and grow through the trial and acquisition of new skills, carefree and flirtatious towards the lure of the unknown.  The formula would suggest a lack of inhibition, an ability to enjoy FUN things, to want...no...to need constant stimulation and activity.

The only child of an only child.

Now the formula changes, begins to take on a new form, morphing into something completely different. 

I have long believed in Only Child Syndrome, and thought I'd made up the term until just now when I thought to Google it.  It turns out that there are many others like me, who can easily acknowledge and name the vast array of benefits and challenges unique to those of us raised on our own. 

One site outlined the following characteristics:

Conversation skills develop early - only children learn to converse with adults better than their same-age peers.  This is true for Samantha.

She has strong opinions, and a sense of entitlement.  What's mine is mine...

She enjoys her down time, her alone time, her comfort zone of being at home.

And a tendency to be *extra* cautious.  This one was not listed on the site, but I'm curious about its causes.

I was the same way, to a point.  I remember being terrified of learning to swim, of diving at summer camp for the first time, of strapping wooden sticks to my feet and sliding down a snow-covered mountain (teaching me to ski was likely torture for my parents and my ski-school instructor, although thankfully I'm a proficient skier today), and I even remember being terrified as a toddler being strapped into the child seat on the back of my parents' bikes. 

There's fear in not being in complete control of your environment.  I have learned that as an adult.

Samantha is terrified of swim lessons, will scream bloody murder and hold onto your neck in a death grip of fear.

She is hesitant and resistant to trying new things, experiencing new experiences, going new places, participating in a group.  Ballet classes are out of the question.  So are sports. 

We've tried.

I feel like her resistance, her caution, comes from a need to be in control.  I feel like the need to feel in control can come from having been an only child, from not having a readily-handy peer model to back you up in new endeavors.  I'm not saying that's always the case, but I find so many little similarities in Samantha and myself. 

But she takes it all to a whole new level.

I actually started this post a few months ago, but put it on ice while I took my little blogging break.  But something happened on Saturday that really brought it all back to light.  Something that really shook me up, caught me off guard, and concerned me.  Something that takes the term "cautious" and gives it a whole new meaning. 

She asked to go to the playground.  There's one in the school yard directly behind our house, and we started out there.  But she wanted swings, and the swings are in another playground a short distance from there, nestled between two rows of townhomes.  After pulling herself up onto the swing seat, she decided it was too hot, so she wanted to play on the climber to the slides and tunnels, etc. 

We've been going to that playground regularly for years now, since she was 3.  She'd always been hesitant ascending to the platform in any way other than the regular stairs, but gradually became confident with the "foot hold" ladder thingy.  I can't really describe it, and can't find a picture that accurately depicts this, but here's something similar.  The main difference is that instead of the snaking pole that is stepped on in the illustration below, it actually has small steps coming out of the sides at intervals, to climb up, so it's even safer than this.


And once she was able to climb it, she would occasionally play-act that she was scared of heights, pretending to whine about it, then step forward onto the platform and that was that.

On Saturday, now years after her proficiency on the equipment, she climbed the 4-5 feet up to the top step, then began to whine that she was scared, that she was stuck "forever," etc., etc. 

I've heard it all before. 

I continued to sit where I was, just watching, knowing that in time, she'd continue her journey and take that tiny step forward, or descend back down the way she had come. 

But she didn't.

And she wouldn't.

And she was honestly, seriously, no-kidding, in distress

Thinking she was just being silly, I walked over and asked her to step down.  She wouldn't.  I asked her to step forward.  She wouldn't.  I put my hands under her armpits and told her to let go so I could lift her down.  She wouldn't.

And then the tears started.

And she began to shake in terror.

And she began to wail.

And I'm pretty sure all the neighbors in the surrounding townhouses were wondering just what the hell was going on.

I tried everything.  I climbed up to the platform and tried to bring her across to me.

no go

I climbed up and sat on the top step next to her, my arms around her, my knee bridging the small gap between the step and the platform, begging her to just step on my leg like a bridge and walk onto the platform.

no way

I tried reasoning with her, adding a little guilt of age and ability to the mix.

again, nope

And she cried harder, and I had to repeatedly wipe her nose with her t-shirt, in the absence of anything else useful.

And the tears began to roll down her arms.

And, 20 minutes later, I knew I needed help.

Thankful that there were no other children on the playground during all of this, I called Steve, who was home napping, and asked him to come help.  He was irritated at first, wondering why on earth he'd have to come over there because his 8 year old wouldn't get down off the climber, but when he got close, when he saw how truly distressed she was, he knew

Calmly, he tried everything that I had already tried, and I was hopeful that she'd be more responsive to Daddy. 

But she wasn't.

He eventually went up to the platform and, through a tiny bit of trickery and manipulation, managed to pry her hand off the pole and guide her to him. 

It was truly heart-wrenching. 

And even more-so, truly baffling

But we had to be careful how we addressed it with her.  We couldn't be angry.  We could only just tell her it's okay to be scared sometimes

And it hurts me to even think that she'd been that upset over something that simple, that ordinary, that familiar, that irrational

What went wrong?

Could this be a manifestation of her overly-cautious nature, or something else?  An extreme example of my definition of Only Child Syndrome?  An over-expression of a gene (possibly the one for being annoying, but more likely the one for self-preservation) on the extra 21st chromosome?

My child is a cautious child.  I, before her, was also a cautious child.  Perhaps it's just a simple case of personality driven through a maternal genetic link.

I'm interested in your stories, here, about similar instances with your children with or without Down syndrome, only-children or children with siblings.  Maybe there's a link somewhere, maybe there isn't.  Maybe I'm just hoping there is, so I can rationally explain her behavior.  Maybe she'll grow out of it.  Maybe this was a one-off.

Hopefully.

*sigh*



Wednesday, July 23, 2014

And Now the *Real* Stuff About the NDSC Weekend

I touched briefly on our weekend at NDSC Indy in my last post, a broad generalization of our 3 days there, devoid of any real color or detail that might give you any insight into exactly what it was all about and what we got from it. 

Indy was my 3rd NDSC conference.  My first, two years ago on my home turf in DC, was good, but I was beginning to learn the limitations of a child in a grown-up setting, in a place where the hustle and bustle of adults and the timbre of big voices and even bigger laughs and cheers can overwhelm a sensitive child such as Samantha.  Steve and my mother also came, but it worked out best when Sammi went home with one of them and I hung out there on my own.  My second conference was last summer in Denver, which I attended solo.  I was freed up to volunteer on the IDSC table, attend the film festival, and go to a few research sessions, where I learned some pretty amazing stuff. 

This year I gave it another go, and took Samantha and my mother along with me to Indianapolis. 

And Samantha hated pretty much every second of it. 

Mom and I did some tag-teaming, each taking turns attending sessions while the other did the child-entertainment duties.  Happily, once we managed to get her out of the room each day, the child was open to holding court in the lobby (the unattended shoe-shine stand with its large, throne-like leather seats was her favorite venue) to read her books or play endless hours of "doctor" with any child who happened by.  On occasion the act of moving from point A to point B was cause for a tantrum or, much to my horror, doing a runner!  This kid is totally not an elopement risk, not a runner, but for some reason, most likely because she knew it would totally get a rise out of us, she made a break for it not once, but twice.  Once was outside in the lines at the food trucks (those are a topic for another post altogether, I think...those of you who were there are all probably nodding in collective agreement that the situation could have been a lot better...).  I proved to the world at that moment that yes, I do get really mad.  And yes, I do yell at my kid.  I'll never forget a voice behind me, as I bolted after my bolting child, saying, "And...we have a runner!"  In mid-stride, in my head, I was, like, "Me?  You talking about my kid?  No way..."

With old friends, Kayla and Lucas


But, other than that, the conference was really pretty fabulous.  I actually got to meet and spend time with many, many of my Facebook and blog friends, able to now put faces to names.  My mother learned what it was like to be related to Samantha, the star of The Bates Motel blog, when she got mobbed in a restaurant at lunch time while I attended a session.  Got a text message from a friend who had been present at said mobbing, telling me all about it, worried that my mother may never recover from it.

She was okay.

Whew.

And so was my impulse-control-challenged kid who was completely disinterested in the mobbing, focused instead on getting her hands on Moxie's iPad...and the next day at lunch time focused on getting her hands on Moxie's banana...  Hey, Moxie, got anything else my kid can take from you??

I think I've harped on enough about Sammi's bad behavior.

A few quick notes about the hotel.  The JW Marriott is beautiful.  I'm completely in love with their bath products in the rooms (Aromatherapy Associates - dude, this stuff smells sooooo goooood, and totally luxurious - you only need a tiny bit of the shampoo, conditioner and body wash, unlike the watered down crap I've gotten from other hotels).  The staff was amazing.  The location is great for some things (like running along the canal or going to a baseball game), and not so great for others (like finding shops or restaurants that a tired, hungry little girl doesn't mind waiting for/walking to).  It was easy to find your way around in (I've never seen interactive maps in a hotel!  Fabulous!), and the bathrooms were spotless. 

The sessions that most interest me at these events are the ones that focus on research.  I attended the session by Dr. Harpold and Dr. Reeves about "Advances in Down Syndrome Cognition Research" and the session by a clinical researcher from Massachusetts General, "Research 101:  What is a Clinical Trial and Why Participate?"   This is really an exciting time for Down syndrome research and the creation of drugs to boost cognition.  I know people get all weirded out when you mention cognition-enhancing drugs ("I would never change my kid!  How can you suggest such a thing?"), but the truth is it's not about changing someone with Down syndrome.  It's not about removing Down syndrome.  It's not about altering a personality or making a person into someone they're not. 

It is about enhancing abilities.  Our kids have issues with memory function, with decision-making and self-help skills.

They have issues with cognition

From Wikipedia:  Cognition is mental processing that includes the attention of working memory, comprehending and producing language, calculating, reasoning, problem solving, and decision making. Cognition is a faculty for the processing of information, applying knowledge, and changing preferences.

And yes, I want to enhance that for my girl. 

And there is a bright light on the horizon - some very promising clinical trials going on at this very moment.

My mother attended the session by Dr. Blumenthal on "Biomedical Research on Down Syndrome and Alzheimer's Disease." 

This is what keeps me up at night. 

People with Down syndrome are predisposed to getting early-onset Alzheimer's disease. 

What do I want for my daughter?

I want her to have a happy, healthy, long, productive life.  Alzheimer's has no place in this picture. 

And while the parents of the little ones with Ds are crowded into the sessions on speech, gross motor skills, reading and math, I prefer to focus on the future and hope that something can be done now, while she's still young, to alleviate the fears and destroy the monstrous shadow that threatens to take and alter her in her adulthood.  There is a lot of research going on right now into Alzheimer's and Down syndrome, drug trials seeking to eliminate the threat both for those with Ds and without.  And I'm optimistic that this can happen sooner than later. 

And before I turn this post into a pit of despair, a fount of doom and gloom, I'll finish my NDSC weekend wrap-up with a little more of the fun stuff.

On Saturday night I attended the dance alone, while my mother went up to our room to put my exhausted child to bed.  I was alone, but not alone.  Everywhere I turned, another friend to talk to.  And, through one of these conversations, I discovered that Produce, a film I had wanted to see that afternoon but that had been shown in a room filled above capacity, was being re-shown at 11pm.  I raced down to the room and got a private screening with 4 other people.  Great film showcasing an amazingly talented young actor with Down syndrome named David DeSanctis, who I was excited to get to meet on Sunday morning. 



Being there was like being with family.  I was surrounded by friends old and new, creating and cementing friendships that I know I will have for a long, long time to come.  I had a little moment there at one point, when a woman approached me and said, "Is that Samantha?  I read your blog!"  I didn't get her name, but based on that comment, I don't think I know her from Facebook, and think she's just a regular reader here.  That seriously made me feel good, and inspired me to come back and start writing again.  I wish I had gotten her name, though, and would give her credit for these last 2 posts and the many others I plan on writing, going forward.  Maybe I could tell her she pulled me from the cold depths of blog retirement.

Next year the NDSC conference will be in Phoenix.  I'm definitely planning on attending, one way or another, and can't wait to do it all again!  Good people doing good things. 

I love this club.  :-)













Wednesday, July 16, 2014

Star-Struck



I'm not one to name drop.  The concept embarrasses me, except in the company of close friends or friends who have absolutely no idea what/who I'm talking about.  I've always been the one who was cool and collected when meeting or bumping into folks with highly-recognizable names, hiding my nervousness and possibly coming off as extra-aloof, much to my horror.  But I've had friends who gush.  Talk about horror!  I actually have felt sorry for them, wondering what the other thinks of them for being so over-the-top in their face-to-face accolades and songs of praise. 

Ugh. 

Really?

Maybe I'm just a snob, a crappy friend, a bitch, whatever.  But for some reason my fear of outright rejection in pretty much any social situation has gotten the better of me and kept me pretty calm, if not painfully timid to the point of sabotage, keeping my own, true self well hidden below the surface where nobody even thinks to look. 

And then the moment is over, I bounce back, and it was like I was never even there, except in the cool, breezy rooms of my partially-constructed memory palace.

This past weekend, I was pretty star-struck at the National Down Syndrome Congress (NDSC) conference in Indianapolis, which I attended with my daughter and my mother.  I feel like age and maturity have provided me with the tools to function more effectively and efficiently when nearly overwhelmed with awe at meeting people I respect highly and feel I know so much about.  I'd originally planned to hide behind my kid, but she was so miserable and downright rude to everyone, I was left to fend on my own. 

Like I said, I don't like to name drop.  So I won't.  But I will say that rubbing elbows with such well-known scientists, writers, bloggers, founders, executive directors, self advocates, actors and doctors from the Down syndrome community was an incredible treat this year, even more so than in past years at NDSC.  I felt more of a connection as the names, mostly unfamiliar to me just two years ago, have bubbled up to the surface of my reality as a mother with a child with Down syndrome, as a person who continues to learn nearly every day, as a parent who is determined to do what it takes to ensure the health and well-being of my daughter into the future.  The names have become iconic, and important to me and to so many others.  They've become familiar and are respected by the community. 

As star-struck as I was, I actually felt a part of their worlds.  Down syndrome has brought all of us, lay-people and superstars alike, together into this club, this special place that supersedes title, education, socio-economic background, residence, religion, race, national origin... 

We are all the same. 

We are all here for the same reason.

We are brought together for our families, for our friends, and for those who have yet to discover this amazing place, but who will certainly be joining us in the future.

Rock stars of the Down syndrome world?  Yes, they exist.  But knowing that we all share common goals brings us onto the same playing field, creating a learning environment in which we gather and disseminate information, creating a sharing environment in which we expose our feelings, our hopes, our fears and our opinions (and appreciating differences in those opinions), creating a huge family, in which we care about one another.

NDSC Indy was a magical place. 

I'm not going to name drop, but I will say a tremendous Thank You to everyone I met, everyone I spoke to, everyone I listened to.  Every word was valuable, appreciated, absorbed.  Every interaction was special. 

Looking forward to doing it all again next summer in Phoenix.

May the stars continue to shine brightly.



Thursday, May 29, 2014

Party People



Party pictures are always so much more interesting when they include lots of people. You know, like at a party.  Parties really aren't much fun if there are only 1 or 2 attendees.  But I'm cautious of posting photos of people I don't have permission from, and often don't feel like taking the time to contact everyone's parents to see if it's okay to include their kids on the blog.  This time, however, to prove that Samantha was not the only person at her party, I have taken that extra step and gotten permissions. 

Samantha turns 8 tomorrow.  How did my baby grow up so quickly?  I usually have her party after her actual birthday, since, at least before now, I was afraid it would be confusing to her to have the party first and have everyone tell her happy birthday, but not actually be that age yet, and then have everyone tell her happy birthday again on the actual day.  I wasn't sure how to explain that to her.  I'd originally had her party set for this weekend, following that tradition, but something came up and I was able to move it to this past Sunday.   And I knew that there would be no confusion for her.  I am loving that now it's easy to explain so, so many things to her that she completely understands.  It's a beautiful thing. 

Every year I begin to obsess about Sammi's upcoming birthday party as early as February.  I am determined to be the ultimate crafty mom and do as much as I can myself, rather than buying pre-made stuff.  Not like there's anything wrong with pre-made, but I think the crafty stuff always looks better, even if it's not perfect.  Uh, like my cupcakes.  Okay, so I didn't actually make the cake from scratch, or even the frosting, but I did try my hand for the very first time with a piping bag, and was thrilled with the results! 


This year, February came and went, along with March and April before I realized I needed to act fast.  I conceded that my crafty fantasy was not likely to happen, and that I'd have to settle for prefab.  But when I began to really think about it, I discovered that less became more, and I could still pull it off with a much simpler plan.

The cupcake toppers were perfectly-hued felt flower stickers that came together in a package from Michael's, on colored toothpicks.  I left the backing on the stickers, and lifted it just enough to slide in the toothpick, creating an instant topper!


I've never been a big fan of the little goody bags with random plastic toys and mini bottle of bubble stuff with a wand that's too small to use.  Maybe that's not what's given at parties anymore at this age anyway, since the last party I went to had the most brilliant guest gift ever, a gift card for a local froyo joint.  But again, I prefer the DIY approach, and Target's metal buckets in their dollar bins always serve as the perfect vessel and theme enhancer.  This year I added plastic pinwheels (went to 4 different Targets to find them, but wasn't able to get enough) and decorator flowers from Michael's (to supplement), mini gel pens, a glow-stick, a package of fruit snacks, a paper-pulp flower pot and some zinnia seeds in a little self-made envelope with planting instructions printed on it.  The ensemble cost less than $3.00 each to put together, and is far more interesting than most typical party favors, if I must say so myself!


I re-used some garland decorations I made by hand for Sammi's party 2 years ago - who knew I'd get the opportunity?  Glad I saved them.  :-)


My mother remarked that this year the party seemed so much more fun, since the children were more self-sufficient and could run around on the playground on their own, and we grown-ups could hang out in the shade of the pavilion and gab.  It was really pretty awesome to think about, those year-to-year changes marked by this one event.  Samantha was pretty self-sufficient as well, in the capable hands of her friends for the most part, and within range of our vision for the most part (glad I put her in a bright pink dress!).  I wasn't worried about her, but Steve did report that at one point when he tracked her down at a distant portion of the playground (it's a pretty big plot of land), he stopped her from picking up a little kid who was playing there.  Ever the sweet-hearted little helper, sometimes her "help" is not wanted and skirts a potential disaster since she doesn't yet realize she's not strong enough to lift someone up.

As is customary for Samantha's birthdays, the request for the Happy Birthday song to be sung quietly was heeded, and her sensitivity to that sort of thing (which I suspect she's outgrown, but she has been conditioned now to expect that she's going to have a problem with it and even requested a few days before the party that we bring her headphones, just in case.  A request we did not heed because we forgot.  On purpose.)

 

Um, yeah...the photo below, of Sammi and Louisa, was taken just before Louisa decided she wanted to get down and Samantha nearly let her make the head-first drop to the ground.  No babies were hurt in the taking of this photo.





 
 
So, for next year...let the obsessing begin!  What does one do for a birthday party with a bunch of 9 year olds?  Is a playground with a pavilion still appropriate?   Do we need to get more creative (oh, please say nooooo...)?  To me, 9 year olds sound like alien creatures - I can't even imagine what to expect, especially with the mental age gap between them and Samantha.  What happens, generally, to birthday parties as kids get older?  This task of creating next year's party may put my usual February planning start date to shame.

Tuesday, May 27, 2014

Sidelined



Who'da thought that my last post, my brief return to blogging, a post about my running triumphs, my personal goal-setting and accomplishments, my love of running, would be followed up by this one, where I will talk about pain, disappointment, and setbacks.

I overdid it last week.

For the last 7 months, I've been running about 4 or 5 days a week, resting a day in between a set or 2 or 3.  Last week I ran  6 days without a rest day.  Granted, there weren't any great distances in the mix, and only 1 or 2 done outside where the path is so much harder than my cushy, shock-absorbing treadmill.  But not resting in-between may have been my downfall. 

Temporary downfall, I hope.

I sit here typing, at a time when I would ordinarily be running, thinking about the calories burned and how much closer I would be to fitting into some of my pre-baby clothes, celebrating the fact that I won't have to wear the fat-sucking, wet-suit of a bathing-suit-of-shame this summer, I have my left ankle soaking in Epsom salts trying to gauge how long I will be sidelined. 

It's not like I can go to the gym and do something different, like cycling or the elliptical, either, since my exercise window of opportunity is limited to 25 minutes a day between the time I drop Samantha off at school and the time I then need to get ready for work (and I'm still late for work every day...). 

And now I think this may mean that I need to come up with some blog posts to write to fill the gap. 

It's been so long, and I just don't feel like I have much to say these days. 

I could talk about the non-event of our IEP meeting, but it would be incredibly short and you'd fall asleep before the second sentence.  Have you ever heard anyone call an IEP meeting fun?

I could talk about Samantha's birthday party that we held 2 days ago, but honestly, it was pretty much the same as the last 4.  Same location, similar pics.  I will still post something about it, but I'm not in any great rush.

I could talk about, uh, ummmmm, well...

Yeah, that's about the extent of things. 

Not exactly stimulating reading. 

Our lives are pretty basic, my camera woefully under-used these days.  The kid still continues to amaze me every day, and purposefully makes me laugh constantly

But that's pretty much it

I'll try to get my creative juices flowing again, perhaps inspired by the now-lukewarm water my foot is soaking in.  I think that's a sign it's time to pack up the keyboard for today.

In the meantime, if any of you have any brilliant home remedies for quick recoveries from tendonitis, please pass them my way.  I'm missing my morning runs terribly right now. 

Friday, May 9, 2014

Racing for Respect and, Apparently, Hardcore Points



I had been envisioning my first 5k race, in front of the US Capitol, to be covered by a blue sky and warm sun, mild and breezy, framed by the pink blooms of awakening cherry blossoms.  It was to be at the very end of March, after all...

But what I got for my first 5k race was something very different.  Grey, windy, rain-soaked, and a bone-chilling cold that saw snow in most of the area later the same afternoon.  Go figure.  I was more than happy to run in it, knowing that once I got going, the warmth in my muscles would eclipse what was going on around me, but I was concerned for Steve and Samantha, who were coming to support me.  I'd been talking up the Kid's Dash to Samantha for weeks, promising her I'd run it with her, convincing her that it would be so much fun.  I couldn't just turn and tell Steve to keep her at home, having her miss a memorable event for a cause that benefits people with Down syndrome in our region.  No way.  Gotta toughen her up, right? 

Ha.

I did tell them to go find somewhere warm to go while I ran my race, then re-join me in time for the Kid's Dash, which is exactly what they did.  But, after I completed my own portion of the race, they re-emerged in time for the Kid's Dash, and Sammi ran, giggling the whole way, holding the hands of myself and a friend. 

The highlight of the day?  Seeing her so proudly holding up the dog tag given to her at the end, hoisting it above her head, shouting, "I won!  I won!

Priceless.


Proudly displaying her prize
 
And I have heard that people who run in those kinds of conditions get a hardcore point status elevation to heights of legendary proportion.  Well, perhaps in our own minds, which is what counts most, right? 
 
I went on to run one more race this season, last weekend, in my own neighborhood, in the beautiful weather I'd hoped I'd have.  I finished in good time, 87th overall out of 272, and 3rd in my age/gender group, out of 15. 
 
Mission accomplished.
 
Crossing the finish line
 
After the race
 


Friday, April 11, 2014

C'mon, Ya Gotta Do Better Than This...



I am not happy.

Not happy at all.

Actually, I'm pretty peeved.

A while back I received the class newsletter or a parent update or whatever via e-mail, listing all of the upcoming activities.  I've learned to be careful to make note of some things and put them on my calendar at work so I don't miss them, like the all-important Number Shirt Day, or the class field trip, or Pajama Day, or Crazy Hair Day.  I mean, it's not like Sammi's going to come home all excited to tell me about one of them with any real reliability.

So, all of those things were on my calendar.  Actually, I put them on my calendar for the day before, as a reminder, so I'm sure not to miss it. 

Today was to be Crazy Hair Day.  And, to be absolutely sure that it was the right day, I went back to the school's website and clicked on the student newsletter yet again, and yes, there it was, still listed for today.  I got the calendar notification yesterday, and had planned to go to CVS to buy some fun colors to put in her hair.  I was accused last year (jokingly, of course) of sending her to school as if it were Cute Hair Day, because it really wasn't very crazy.  So I knew I had to do better.  I didn't make it to CVS, but on-the-fly this morning, I braided ribbons into her hair and yes, if I must say so myself, it was pretty awesome. 

Perfectly crazy, perfectly cute, as it should be. 

And you know what? 

Sammi loved it.

BUT...

As I was packing up her backpack, I caught a glimpse of a flyer that had been sent home in yesterday's monster paperwork packet of stuff-that-comes-home-and-sits-in-the-pile-until-I-have-a-minute-to-look-at-it, that said something about today being Wear a Hat Day for cancer awareness or something.  Like I said, it was just a glimpse, and we were in a hurry to get out the door.  I figured either/or, it had to have been optional.

BUT...

When we got to school, there wasn't a single. strand. of. crazy. hair. in. sight. 

Except Sammi's.

Just hats.

I asked one of Sammi's former aides, who was standing outside directing the morning drop-off traffic about it, and she said it had changed.

I asked if Sammi was going to be the only kid in school with crazy hair today.

She said, "Pretty much."

Looking sheepish, she said they'd made an announcement about it yesterday.

And no, there was nothing on her communication paper about it.

And yes, I'm pissed.

So, while I was voicing my displeasure about it, my happy, excited and oblivious (for that moment) daughter rushed into school without saying goodbye, without a goodbye kiss, only to head into what may have been disaster.  I don't know.



Her former aide suggested I go home and bring back a hat for her to put over her crazy hair, so I did.  It was just a baseball cap, and I gave it to the aide to take to Sammi.  I hope it worked, but I don't even know if it would fit over the braids. 

But I'll tell you this, I do not want my daughter to feel humiliated, different, left out.  I do need additional assistance in getting this kind of information to us so this kind of thing doesn't happen.  If I read absolutely nothing else from Sammi's paperwork when I get home, I do ALWAYS read her communication page.  It's my only insight into her day.  The other stuff can generally wait. 

And if they're going to make a big change like that, the kind of change that can isolate or embarrass a child if the message doesn't come across, especially a child with an intellectual disability with the cards already stacked against her, who cannot be relied upon to pass the message, then someone needs to damn well make sure that message is passed.

I can only hope that Samantha still has a great day.  She was so proud of her hair this morning, and I hate that someone's going to rain on her parade.  I can only hope that she and her friends can laugh it off, that she'll willingly put the hat on, and the day will proceed as normal, that the damage hadn't already been done before the hat could be brought to her once the starting bell rang. 

I wish I could have hugged and kissed my baby girl goodbye this morning.

I'll make up for it when I get home.