"Sharing" the Only Child with Down Syndrome

A while back I wrote about the need of parents of “only children” with Down syndrome to have the support of others like us, to have the understanding by others not in our situation of the uniqueness of our position, the specific challenges we and our children face that couldn’t be understood by the vast majority of the population, in the Down syndrome community or otherwise.  Sibling sessions are never uncommon at Down syndrome conferences.  Parents of a child with Down syndrome who also have at least one “neurotypical” child just can’t understand us, assume that things for us are exactly the same as they are for them.  We just can’t fully allow ourselves to relate to them, either, or, perhaps, it’s just a manifestation of the dreaded “J-word.”

JEALOUSY

(I'll let that word lie dormant for now, though, and move on...)

Seriously, for about 8 years, I thought I was just about the only one.

The only one who had ever walked this particular path.

The only one who was terrified of the future for reasons so different from parents of others. 

The only one who had absolutely no idea who would be able to look after my child when I’m no longer alive on this earth.

The only one who felt the cold sliver of fear and pain of sadness in my heart that I would likely never become a grandparent. 

The only one who wanted to send my child to school every day all day all year round because it was the only place she could benefit from interacting with other children.

It’s hard. 

And feeling alone is almost even harder. 

I mean, I don’t like to whine.  I would never have considered voicing those fears to a parent of neurotypicals.  Not only would they not really get it, I think, but they would likely also be quick to downplay my concerns.

Okay, so maybe I sell short the character of the vast majority of parents of a child with Down syndrome…  I know it’s unfair.  I know that most of you reading this post also fall into that category.  And, for that, I’m sorry. 

To be perfectly honest, I write what my primary feelings are/were/have been…I write from that place in my heart that is filled with love and worry for my beautiful, sensitive, innocent, unique daughter.  We all have that place in there, regardless of how many children we have.  And, whether mine is misplaced or not, it’s how I feel, and my concerns are real to me.

Two years ago, my friend Amy and I met for the first time on the last day of the National Down Syndrome Congress (NDSC) convention in Denver.  We were introduced by a mutual friend who knew we were both parents of “onlies,” and we embraced like old friends, as kindred spirits, each with the same concerns for our children.  We immediately recognized a need for outreach to all of us spread out there who had yet to find each other, had yet to find any kind of support. 

We began to think of ways we could get some sort of recognition at a future NDSC event, and, as a means of research into just how many of us were in this unique situation, 6 months later, my Down Syndrome and the Only Child Facebook group was born.  The response to the group completely bowled me over!  Almost overnight, I watched the membership requests surpass 100, and it kept growing to its current number over 200-strong!  Those who joined expressed so much joy at having found a place to just talk about it with others who totally get it, were excited to be a part of such an elite group so critical to our emotional well-being. 

Requests to The-Powers-That-Be at NDSC were made for a Sharing Session (an informal group session led most often by parents on the first day of the general conference, covering broad topics of interest).  After a few initial turn-downs, Amy and I were thrilled to get word that permission was granted, and an “Only Child” session would be included this year in Phoenix, with us as co-moderators! 

Today is Sunday.  I’m currently sitting on a plane returning home as I write this.  The high of the weekend in Phoenix will likely cling for another few days, having started from the moment my plane touched down there, with a true pinnacle at the moment Amy and I began to speak and lead a group of more than 30 parents who were excited to have found each other. 

Everyone introduced themselves, spoke about the biggest topics of concern they face as parents of onlies. 

Some cried.

I’m actually getting teary now as I write this. 

It was that impactful.

They were tears of worry.  Tears of gratitude.  Tears of just plain being overwhelmed and under-understood...lost...for so long.

And now found.

Maybe I make this sound super dramatic, but really, for me and for others, it was. 

It’s hard to explain the impact we all had on each other.  I actually feel really changed by that experience, and am pretty sure I’m not alone.

I’ll write more soon, in another post, about what topics were discussed.  But for now, I just wanted to re-live that feeling. 

The need for this group was obvious.  We need to make sure TPTB at NDSC know this.  For those of you who are reading this, who attended that session, or who would plan on attending a future session if it were offered (the convention will be held next year in Orlando, at the end of July), please send feedback of some sort to NDSC…I can provide you with e-mail addresses (I don’t particularly want to make them public here…just send me an e-mail at bateminx@yahoo.com and I’ll send you what I can!).

Thank you to everyone who moved me this weekend, and many thanks to the amazing folks at NDSC for helping to make this happen. 

Finding My Way Back

I've been feeling a little sad lately.  Nothing serious, nothing to the point of despondency, distress or despair, nothing that will ultimately break me or cause me great emotional upheaval, but something a little less tangible... 

I've been feeling that something's missing from my life. 

A little something.

As a matter of fact, maybe some of you already know what this is. 

I've been missing a little piece of me that had been ever-present for nearly 7 years, something I'd all but abandoned over the last year, something that's been calling to me like a siren, my resolve holding fast to stand my ground and do what's best for me.

I have enjoyed the relative freedom of these past months, but...here goes...I really have missed my blog terribly.  I've missed my creative writing outlet, that one place I can empty my mind of the tiniest of thoughts that start as mere droplets then build to a full flood of ideas pooling and swirling, crashing in waves of words on a page.

There was a time when those words were a force in my life - I embraced them, sent them forth to whomever would read them.  They were cleansing, giving me outlet for issues relating to disability, for rejoicing the triumphs in my daughter's life, for seeking support and solicited feedback on what seemed like failure.  They gave voice to my hobbies, allowing me to share my photos, vacations, recipes...whatever I wanted. 

But, much to my dismay, they also became a chore or sorts.

Writing takes time.  And time is what I have less and less of anymore. 

Writing also requires inspiration, something I have been short on of late.  While this blog began as a running narrative on Samantha's life, I have been faced with new truths that I had denied for so long. 

The privacy dilemma is the biggest of these truths. 

A few years ago I got into a heated "debate" (I'll call it that because it sounds so much nicer than it was) with someone very close to me who voiced concerns about my apparent disregard for privacy in the lives of Samantha and those around her in my post content.  This person stated that there are many factors to consider - the parents of Samantha's classmates, and the students themselves as they get older, will read about the issues and concerns I have, information they really don't need, as it may influence their relationship with Sammi in a negative way;  family members in rather public positions may be associated with some of my more controversial perspectives when I don't anonymize names or places relevant to the posts, and especially when these posts and their content are searchable within Google.  It's complicated, and I still don't agree with all of the arguments made, but I definitely have worked to remove the posts of contention and minimize any kind of negative attraction my subsequent posts could possibly provide those who know her at school. 

It's been a real challenge.  And I, too, agree that that kind of minimization is necessary at this point in her life.

But, by the same token, there's actually not a lot of stuff going on at all to even write about in the first place.  Our lives are, essentially, ordinary.  Samantha's doing well at school.  She is certainly not at the level of her typical peers, but she's accepted and supported and is learning, and there are no real concerns to note.  I don't need the support of my peers at this point in time, nor is there anything remarkable to report.  I've heard this is the pitfall many bloggers of older children discover at some point.  I've stepped back a little from my involvement in the community, as well, so there's little to discuss there.  My social media presence has taken a hit and I'm completely in the dark about what anyone's been doing lately, either on Facebook or in the blogosphere. 

So I struggle with topic. 

Oh yeah, and that pesky issue of time. 

While becoming a bit of a hermit has suited me fairly well, I still miss my words, and will try to move forward by acknowledging my need for their returned presence in my life.  I'm not sure what I'll blog about, only that I resolve to do it. 

I asked Samantha today what I should write about.  After first turning down her suggestion that I write about playing doctor, she offered that I should write about exercising, and how I love running.  I think that's a fantastic idea, and one that I'll likely explore later in the week. 

If you're reading, I am grateful that you are sharing this with me.  But I had lost my need to write for me somewhere along the way, and I am thrilled to say I am back in search of my mojo.

 

 

Day 1: 31 For 21: Let's Roll...

I wasn't going to do it.

I wasn't even going to entertain the thought of doing it.

I didn't do it last year, although I did feel the pull of it, the desire to do it, the need to take advantage of it...

But, in the pre-dawn hours of semi-sleep this morning, when my body had decided that 7 1/2 hours of fairly restful slumber was quiteenoughthankyou, I started thinking about it. 

And I had an idea.

31 for 21 (thanks Michelle!) is the way Down syndrome bloggers have to commemorate the month of October, also known, in our circles, as Down Syndrome Awareness Month.  By blogging all 31 days to help bring awareness of, advocacy for and information about the 21st chromosome that graces the complete corporeal existence of our loved ones with Down syndrome, we can put so much out there for the enjoyment of our peers, the assistance to new parents just starting out on this amazing journey, and new and enlightened understanding to those not connected in any immediate way to the Ds family.

My idea stems from the fact that I have very little time to blog these days, and a whole 7 years of posts stored here.  7 years of writing that may have not seen the light of day in, well, perhaps 7 years. 

896 published posts (okay, 897 by the time this one hits the blog) to choose from, to enjoy all over again, to re-share with all of you this month by re-posting some of my favorites that pertain to the awareness of the beautiful and often misunderstood 3rd copy of the 21st chromosome found in the genes of more than 400,000 people in the US alone. 

Today I'm just posting to let you know I'm gonna do this, gonna take the plunge, gonna bring back some moments from the dark, dusty, nearly-forgotten corners of this blog, and to  invite you all to enjoy the ride with me - I'm excited about this!  There will be some new material written, too, so keep an eye out for that.  And for you bloggers who may be reading this, I pledge to read as many of your posts as possible, and will drop you a comment or two to let you know I've been there.   

So, Happy Down Syndrome Awareness Month!  Let's roll!!

Milestones

Milestones are pretty amazing things.  They're like this pre-programmed set of expectations that come with the baby/child handbooks, or, more accurately, with the baby/child itself; a pre-determined minefield of emotional highs and lows for parents.  We know what the milestones are supposed to be, when they're supposed to happen, and in what order.  We hold our collective breaths, and we (insert deep inhale here)...wait...and wait...and wait...  And when they don't happen, we question ourselves, our methodology, our children.  We feel frustration (insert carefully-modulated, controlled exhale here). 

For the parents of children with special needs, there's a love/hate relationship with milestones.  On the one hand, we have to learn how to throw some of them out the window completely, or to push the timelines back to a seemingly impossible place and time.  We learn acceptance in a huge way, while trying to avoid complacence.  On the other hand, we know how to celebrate when milestones are hit, and celebrate BIG!  We curb our expectations, but nothing is ever taken for granted - the simplest of milestones met is usually a monumental accomplishment for our children.

I truly thought this particular milestone would never happen.  Let's just say I think the Kudos t-shirt Samantha's wearing in the last photo is highly-appropriate and well-deserved.  I just wish the photos could show how quickly she does this!

The next great milestone, I think, will be losing the training wheels on her bike.  I won't hold my breath for that one.  Come to think of it, I may have said that at some point about walking, running, dressing herself, using the toilet, reading, writing, tying her shoes...

All in good time...

Flowers for Algernon and the Development of Cognition-Enhancing Drugs for Down Syndrome

I wrote this post back in 2009, before I learned so much more about clinical trials and the cognitive drugs that are on the horizon for people with Down syndrome, and know that they're not designed to *change* anyone. I also wrote this before I learned of the devastating increase in early-onset Alzheimer's disease in people with Down syndrome and the need to find answers that will benefit not only people with Ds, but with the human population as a whole.  I find my perspective in this interesting, though, written when Sammi was just 3 1/2, when I was quick to jump up on my high horse and decry any kind of perceived social injustice against people with Ds or other cognitive disabilities. Would I support the cognition-enhancing drugs that are being tested now? DEFINITELY. If, as they're purported to be, they're safe and proven effective and help my daughter increase her academic and self-help skills without changing her personality, bring 'em on.   

November, 2009

I read a very interesting article yesterday, posted in Wednesday’s Los Angeles Times newspaper. In a nutshell, it documents research currently being conducted to develop a “cure” for Down syndrome. Setting the fundamental intent of the article aside for a moment, I need first to harp on a few little details that are grating on me like nails on a chalkboard (or like Samantha grinding her teeth!). I thought reporters were supposed to do their research first before writing an article (especially for such a highly circulated publication!). The term “cure,” used several times in the writing, is tremendously inaccurate. Down syndrome is caused by an extra copy of the 21st chromosome which is present in ALL of the cells (unless the person has mosaic Down syndrome, where only some of the cells have the extra copy). You can’t “cure” that. Now I’d swear that the first time I read the article, they referred to people who “suffer” from Down syndrome (as many articles tend to do, which drives me crazy), but now, upon re-reading, I don’t see any reference to that. Could they have changed the wording somewhere along the way? Maybe I just wanted to see that so I could be extra-annoyed. Just as an FYI, my daughter does not suffer in any way. While I would have preferred it if she had been born without a heart defect that she needed surgery to repair, she’s certainly not suffering! Finally, the article calls Down syndrome a “disease.” Uh, correct me if I’m wrong, but genetic issues are not diseases. I feel like that wording perpetuates the fears of the ignorant that they can actually “catch” Down syndrome. At least People First language was firmly in place throughout the article.

Now, the intent of the article was to explain that research has shown that the brains of people with Ds are unable to make norepinephrine, a hormone and neurotransmitter. The drugs Droxidopa and Xamoterol both convert to norepinephrine in the brain, and in mouse trials, mice with a replicated version of Down syndrome responded with increased, “normal” cognitive functioning when given Xamoterol. However, the effects were short-lived, and the mice returned to their previous state quickly.

While I do find this research very interesting, as soon as I read this, I was reminded of Flowers for Algernon, a book by Daniel Keyes written in 1958. I read it for a class in 9th grade, and was immediately both haunted and obsessed by this bittersweet tragedy about Charlie, a man with a cognitive disability who becomes the first human to undergo an experimental surgery to increase his intelligence artificially. A mouse named Algernon was the first successful recipient. Throughout the story, Charlie, placed under a virtual microscope by doctors and researchers, begins to show all of the positive signs of an increased mental capacity. He eventually becomes a genius, eclipsing the intelligence of those around him, and continuing his own research on the procedure, only to discover that there is a flaw in the research, and that (in the fictional context of the book), “Artificially-induced intelligence deteriorates at a rate of time directly proportional to the quantity of the increase.” Algernon deteriorates, becomes unstable, and dies. Charlie begins to deteriorate as well, evident to the reader through his own words in progress reports he wrote throughout the trial.

I cried at the end of this book, and still get teary thinking about it. It posed, at the time, fictional ethical and personal dilemmas that seem to be now coming to fruition. Would you subject someone you love for who they are and the way they are to a treatment that would change them, possibly only temporarily? Would you really want to know what they would be like if they had a higher intelligence? Would you be prepared for personality changes in this person? While it all sounds very tempting, I know that my answer would be an undeniable “no.” I have sometimes tried to think about what it would be like if my daughter didn’t have Down syndrome. It is always a brief thought that gets shut down and put out of my mind immediately. I can’t imagine what she would be like, and I honestly don’t want to. She is Samantha. She is my beautiful, smart, funny, precocious, stubborn, amazing daughter, just as she is. Anyone different in her place would be a stranger to me. Would I change some of the physical issues that affect many people with Ds? Certainly. I would love to remove heart defects and thyroid problems, celiac disease and early-onset dementia, leukemia and atlantoaxial instability. The list could go on. I would also love to remove some of the challenges society places in the way of people with disabilities, and create more awareness. But would I change her? Nope. Not even for a day.

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.  :-)

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. 

Spreading the *Right* R-Word

***I'm re-posting what I'd written one year ago and the year before that.  It's a message that shouldn't just come up once a year on the relevant day, but should be set as a daily reminder to everyone.  Please remember, if it hurts even one person, please don't say it.***

 

 Today is 3/5, the day to Spread the Word to End the Word. 

And what would that word be, you may be asking? 

Retard.  

Retarded.

More commonly known in this circle as the "r-word," because it actually hurts to say it.  And in honesty, it actually hurt to type it, and hurts to read it, too. 

And for those of you out there who may be reading who may not have a connection to the world of people with intellectual disabilities, this doesn't just mean the intentional use of the word directed at a specific person.  This also means the common, everyday usage becoming more and more a part of peoples' standard vernacular, in which the word is used to describe an idea, or an activity, or a group of people, or even oneself in the context of humor, or distaste. 

And you know what?  That Hurts, Too.  It hurts people with intellectual disabilities and their families, demeans them, perpetuates a stereotype and says it's okay to laugh at them, to make fun of them, to consider them not worthy of RESPECT.  

How wonderful it would be if that were the new R-Word (deserving of capitalization now)...Respect. 

Beautiful.

Honorable.

Valued.

My daughter has Down syndrome. 

And she is beautiful.

And honored.

And valued.

She is worthy.

Please...take the pledge today at www.r-word.org, pledge to stop using that word.  Pledge to help educate those that do.  Pledge to help make the world a better place for people like Samantha.

For Eyes

Well, it's that time. 

After visiting the eye doctor faithfully each year from the time Samantha was 12 months old, after being told that she had an astigmatism and would eventually need glasses, it's now time. 

The doctor has now declared that Sammi's eyes aren't bad, but because she's such an avid reader, now is a good time to take some of the pressure off of her eyes and get her glasses.  She'd wear them when she's reading and when she's in class, to look at the board or do projects, etc.  She doesn't need them in the hallways, at gym, or on the playground - just when she's concentrating, visually. 

The Wiki link to astigmatism is absolutely no help.  I think it may have confused me more than I was to begin with, but I think the gist of it is that because of the shape of her eye, she could have difficulty seeing close and also far...?  Does that make sense? 

Nah, not to me, either.

But I will say this, Samantha was awesome at the eye doctor when Steve took her last week.  She let her put the drops in, was patient while she waited, didn't freak out at the blurriness (and told me, when I got home, that her eyes were "a little bit blurry."), and asked if she could get glasses.  She's totally in to the idea! 

You know what she balked at?  The idea that she'd have to wear them on a necklace around her neck so she won't lose them.  My kid hates jewelry. But I'm sure she'll get over it.

And I'm sure they'll be adorable.  :-)

MIA and the Reciprocation of Guilt

I've been a bit (okay, a lot) MIA lately.  And before I go further here, I'd like to add that any time I read a blog that starts with those same words (rather frequent these days...), I roll my eyes as they begin to glaze over, then click the little X up in the corner so fast it would make your head spin. 

Feel free to do the same.

But back to my original point, in the last 6 months or so, I have felt that if I can't take the time to read the blogs of other people, to comment and show my support, then I have no right to expect the same from them.  I'm just not worthy.  If I can't read blogs, I shouldn't be writing one.  Something I learned several years ago is that if you show the love by commenting, others will do so in return, if for no other reason than the fact that you've laid the groundwork for a nice, healthy guilt trip.  So the reaction to guilt is a reciprocation of guilt.  If that makes sense. 

I comment, they comment, I comment again, because they commented, they comment again because I commented because they commented because I commented, and so on and so on.  And then I have new "friends!"  I like to see comments on my blog posts.  Makes me feel like I've accomplished something, even if it's just in the trade of the guilty consciences.  Not like I quantify my worth or the worth of my words, stories and photos by the number of comments I receive, but there is something rather nice about it. 

If I keep on writing and don't read other blogs, will the comments/readers completely stop?  Will they dry up and go away merely because I am so caught up in my own selfish ramblings?  Will they continue as they have always done because, if I'm wrong, nobody really cares if I'm reading their blogs or not?  I must say, I certainly don't expect reciprocation when I comment.  But sometimes it does serve to remind people that I'm still here.  Sometimes.  I mean, sometimes I'm here, not sometimes it reminds them, although I'm sure it sometimes reminds them, too...

So I'd like to say I'm going to continue on as normal.  I'd like to say I still have time for writing, even if I don't have time for reading.  But the truth is, life is busy, and my time spent on computers (like, real computers, not my cell phone) when not at work doing work things on computers, is scarce.  Especially since my treadmill, that sweet friend that has captured my morning "me-time," still calls to me like a siren from the deep basement.

I also just need to come up with something to write about.  I could dive into the issues with school, but so many people surrounding Sammi at school actually read this blog (uh, or used to read it, back when I was still writing it with some regularity), so I tread lightly there.  I certainly knew that day would come.  I could just start posting photos, could start getting into current events, figure out something topical and of interest.  Not so easy, when our lives are pretty ordinary (quick note to any new moms of children with Down syndrome - you may not believe it yet, but most of your lives will become pretty ordinary, too!).

So, if you've braved this post here to the end, thank you.  And please, please stick around.  I'm trying, really, I am, and have a few posts lined up.  I'd like to start again, woo and court you back into my embrace, because I love and value you all. 

:::smooooooch:::

  

The Aaaays to the Queues, Part I

 

 

 

Thank you all for indulging me with so many fabulous questions last week in response to my plea to populate a series of Q&A posts!  I was worried I'd be the laughing stock of the blogosphere if I hadn't received any, but I always had an out if I wanted to say I'd received all of my questions via private Facebook message.  Who'd be any the wiser, right?  But I didn't have to resort to such a clever yet brutally pathetic deception.

Because I often tend to get long-winded when talking about myself, I'll say that this is just Part I, to keep your eyes from glazing over, and that there will be at least one more Part in the series of A's to your Q's. 

Q)  What do you want teachers to know when your child is in their class? How can teachers help your child in inclusion? What is the most frustrating things about school? What do teachers not do that you wish they did?

 

A) Oh, these are excellent questions! I may have to skip the 4th question because her teachers read my blog, but to be honest, I can't think of anything at this point that they did not do that I wished they did. This is actually a pretty hard series of questions in general - we've been really fortunate that we've not yet seen the *other* side of education, the one where we need to fight for inclusion or one where the teachers weren't invested in my child's education. We've always had an aide in the class that helps Samantha stay focused and helps to modify some of the instructions. We don't want the GenEd teachers to have to modify what they do for a class of 21 to suit just one child - it's not fair to them. We want to make sure that the supports are in place within the classroom environment to help Samantha keep up, etc. 

 

We had an IEP meeting yesterday to add in some accomodations and modifications, things they already had in place, but that we wanted in writing just in case.  They included having Samantha stay in class for the introductory portion of the more conceptual lessons (Civics, History), then leave as part of a small group to have the lesson broken down into more basic, comprehendable pieces by the Resource Teacher.  I really don't give a rat's ass if Samantha learns what the longest river in Europe is, but I do want her to know how to look at a map or globe and to understand where we live in relation to other places.  She can memorize stuff, but I'd rather she understand more basic concepts that will help her in the future.  This is what they've been doing, and this is what's been working.  I don't mind these short, periodic pull-outs, as long as she's learning.  We were validated a few weeks ago when we were told by Sammi's GenEd teacher, the Resource Teacher, the Assistant Principal and two people from the county that had observed Sammi in the classroom setting, that she is definitely in the right placement, that she belongs in the GenEd second grade setting.  I know that can often be the biggest fear for parents - that someone will come and tell them that things just aren't working out, that they need to re-evaluate their child's placement in school.  I certainly feel for those parents.  We hold our own breaths often enough.

 

The most frustrating thing about school?  I just wish that we could observe Sammi in her classroom environment more.  Last year we dropped off and picked up Samantha from her classroom.  This year we have to say goodbye at the front door of the school in the morning, and wait for her to be brought out with her class in the afternoon.  I totally understand security measures that need to be in place, and the fact that there's far less chaos when the parents aren't buzzing around in the mix of things, but we really relied on that extra few moments of communication and connection with her teacher and her aide last year, and now we get so much less feedback on a daily basis.  Sure, we get a behavior chart with notes on it each day, but there's really nothing like 1:1 interactions.  It felt good to have the Parent Teacher meeting yesterday to quell the insecurities we often feel about the teacher we just don't know much, if anything, about, in a classroom we've only ever seen, perhaps, once.  Once again we were able to feel that comfort that had been missing, much like the daily visits we'd lost.

Q.  What is your favorite brand of leggings? Brand of clothes that fits her best? Love your taste in clothes and the fit has been a struggle lately...

A.  Definitely Naartjie!  Their pants and leggings all have stretchy waistbands, and they go up to a size 12.  They pay great attention to detail, and leggings are so much more interesting that regular leggings you'd find anywhere else.  I also find great striped leggings at Old Navy, usually on sale.  For clothes that fit her best, in general, also Naartjie.  They do styles that are less clingy and more flattering than other brands,   Check out their website - they're almost always having a big sale, and every Tuesday they select 3 or 4 items out of their newest collection to run at 40% off for the day.

Q.  Did Sammi's diagnosis factor into your choice to only have one child?

A.  Nope.  We had always talked about having only one child from the get-go.  Plus, I was 37, and knew that even if we did want another child, I couldn't even fathom having another any time in the next several years, at which time I would be too old.

Q.  What programs/apps/etc. did you use to help Sammi to start to read? And keep reading?

A.  Before Sammi was even 2, we were using alphabet and number flash cards with Sesame Street characters on them and baby sign language cards with photos on one side and the words on the other.  She was totally obsessed with those cards, and we never left home without them.  At 24 months she knew her alphabet, and she shocked me before she was 3 by looking at the back sides of the baby sign cards, where only the word resided, and telling me what each card was.  To this day I'm still not sure whether it was just pure memorization of the color of the card, or if she was actually able to read them through long-term memory recognition/recall.  At 4, we were invited to join a test pilot of Terry Brown's online version of her highly successful So Happy To Learn program, in which she has taught people with Down syndrome to read, at her home, for many years.  It could not have gone better, and Samantha, empowered, took off from there. 

Q.  Couples who have a child with special needs have a statistically higher incident of divorce. How has Ds changed/improved your marriage? Has it had a negative effect in your marriage at any point and, if so, how did you get through it?

A.  The key word here is special needs.  The statistics of divorce among parents of children with Down syndrome are actually lower than in the general standard statistics of divorce.  I suspect this may have something to do with how manageable Down syndrome is, how much information and support there is out there that helps parents to work together to successfully raise their children with Down syndrome.  We have been so happy to have been able to agree on everything when it comes to raising her, educating her, providing for her and advocating for her.  Our marriage has definitely been stronger as a result, and Down syndrome, or the fact that Samantha has Down syndrome, has never played a negative role.

More soon!  Feedback and commentary are always appreciated.  :-)

 

Maybe My Kid Really *Does* Know How to Have Fun...

Sometimes I can't help but wonder whether or not Samantha even knows how to have fun.  After 7 years, I still can't isolate some of her triggers, and can't help but wonder if they're as random and changeable as the mid-Atlantic weather, or US government policy.  Being an only child, she's usually most comfortable reading, playing games on her tablet, or watching her shows on DVR.  She loves the playground and bouncy houses, but resists group activity, including sports.  I'm not sure if it's because she gets overwhelmed, or if she just doesn't know how to relax and enjoy herself.  She definitely is prone to bouts of anxiety, and I think somehow some activities tend to bring it out in her.

The Buddy Walk has so far been an exception.  A big day, full of big activities, throngs of people, an organized walk of thousands, loud music, you name it, the Buddy Walk is a great big ball of sensory overload.  This is kind of why I am not so sure about her triggers.  Knowing that Buddy Walk day is about her, she is always able to relax, take it all in, and have fun.  No whining anywhere to be found.  It's pretty astounding, really.  And this year's, held two weeks ago, was probably the best one of all.  My little hostess with the mostest hammed it up, played, socialized, and posed like a pro. 

Pics look familiar on the sign?  Perhaps a little *outdated?*  My printer was out of ink and I couldn't print out new photos the night before the event, so I just left everything from last year and changed the date.  :-)

With her 1st grade teacher of last year and her former AP.

With Charlie.  Love that kid. 

With Cinderella, new mom of an 8-week old.  LOL

With a sleeker, slimmer Batman than last year. 

With Daddy

She gravitated towards the music like a moth to a flame, keeping just enough distance between her and the speakers to stay comfortable.  The kid seriously can't dance (sorry, baby, to your future self who may be reading this...), and for anyone who may or may not have witnessed her mother trying to teach her to crump, my humble apologies for what you may or may not have seen, and for any injuries you may or may not have sustained, either physically from trying to poke your eyes out, or emotionally (Note:  I am *not* willing to pay your therapy bills).  Just goes to prove the apple doesn't fall far from the tree, except at least she's cuter.

Bubbles = pure joy.  Like she could have possibly experienced any more pure joy that day.  Seriously. 

And, for the cherry on top, a milestone achieved that surprised us all, including herself, I think.  I've tried to get her to get her face painted so many times in the past, and each time, she balked, refusing to even entertain the idea.  On our way back to our camp from the petting zoo, we passed the face-painting tent.  On a whim, fully expecting her usual resistance, I asked if she'd like to get hers done.  I took advantage of her silence and the brief flicker of interest, and quickly steered her towards an empty chair, making a fast selection of the same flower on the face of the girl doing the painting, willing everyone around us to stay silent, lest they ruin the moment and send her skittering away with nothing.

Once the artist began, Samantha was fully-engaged, while I still held my breath.

 

And this look said it all.

 

Whew!

A New Lease

I received a reality check the other day.  Hot on the heels of feeling sorry for myself, complaining that I wasn't sure that anyone was still reading my blog anymore, in the middle of my whiny rant (which I then felt kind of guilty about so I quickly changed the subject to talk about something else completely unrelated), I learned that my blog does have value, that whatever I decide to write about, however mundane, self-indulgent, educational or, even, wordless, there are people listening, reading, getting something out of it. 

I'm sure somewhere I've known this all along, but there are times when we all doubt ourselves and our abilities.  Times when we feel like we need to re-evaluate, perhaps make changes, perhaps stay the course.  Times when we acknowledge that we are human, and have flaws.  Times when we just don't know what to say but open our mouths to talk anyway, if only just to hear our own voices.  Times when we don't have to say anything at all.

All of those times are okay.  We all know them, all go through them.  And the blogosphere is not immune.  Sure, our fingers do the talking, often digging deeper into our hearts and minds than our everyday, conscious, IRL selves would do, and sometimes that's what makes us more vulnerable to those doubts and re-evaluations. 

But the reality check I received was in the form of the comments left on that post, and one in particular. 

The one from a woman who has a prenatal diagnosis of Down syndrome for her unborn child.

I know she's reading this, and I must apologize for singling her out, but she really made a big impact on me and gave me the kick-in-the-pants I needed to just keep on doing what I'm doing.  I now know that what I write, the stories I tell, even the ones that I don't think (or realize) are very interesting or thought-provoking, can make an impact on someone.  While I did not have a prenatal diagnosis with Samantha, I remember how important it was to me to have found the blogs about other children with Down syndrome after she was born.  It was that little peek into their lives that assured me that things would be okay, that I was not alone, that I could do this.  That our lives would be amazing, and full. 

I've got a new lease on blogging, and promise to carry on as before.  I enjoy it.  And I feel good knowing that others enjoy it, too.

Thanks for listening.  :-) 

  

Spreading Awareness, Being Boring, Taking Pictures

October, Down Syndrome Awareness Month, has snuck up on me once again.  In the past I've said, "I don't think I can blog 31 for 21," yet then turned around and managed to pull it off anyway.  But this year I'm saying it and meaning it.  I will continue to blog throughout the month, but it most certainly will not be all 31 days. 

I like the idea of a dedicated time to spread awareness about Down syndrome, to build acceptance of our children and loved ones, and to help new families by providing information and support.  The reality is, however, that the main people reading my blog (if any these days!) already have children with Down syndrome over the age of newborn, and are all out there spreading their own awareness.  I love that, and think there's probably not much new and different that I can provide here.  I may do a few soul-baring posts, drop in some photos, complain about the usual issues, and, perhaps, bore you to tears as I'm doing right now.

So, back to our hum-drum life, today was picture day at school.  Remember this post?  About photographing the oddly-reluctant child?  Like, my child?  Like, my gorgeous little model who poses, preens and prances for my camera, but who usually freaks out in front of any kind of formalized photo?  Her history of school photo-taking is laughable.  Even going back to preschool.  The crossed arms, the lowered head, the pout.  She's got it all.  Miserable.  There was one year that we couldn't get anything out of her.  She dug in her heels and flat-out refused to sit for the photo, either on her own, or with her class.  One year we got the pouty pic.  One year we got the smile that came through eyes reddened and tear-stained, a smile so sad and pathetic that anyone who sees it feels horribly sorry for her, for the ordeal that she'd just had to go through.  One year Steve was in attendance, with the hopes that the presence of a parental cheerleader would smooth the rough edges.  Nope.  Got nuthin' from that, too.  Last year the photo was so freaking awful that there was no way I was going to allow it in the yearbook to be viewed for years to come by classmates.  I wouldn't embarrass her that way.  So, recalling that one of the standard back-drops was a purply color, I marched her into the main floor powder room of our house, had her stand up against the purply wall sandwiched between the toilet and the sink, and snapped a few shots, cropped them, and sent them to the school for inclusion in the yearbook.  And, to be honest, at a quick glance, you really can't tell that the shot had been taken somewhere else.  Well, it didn't stand out so much that it would draw attention to itself, thankfully, and trust me, I was fully prepared to have to do the same again this year.

Except...

except...

today she cooperated.  Or so we've been told.  Can you see how I'm jumping up and down with joy??  I'm SO excited, and can't wait to see the photo!  This is a HUGE step!  Of course I didn't send a check for a photo package in with her (can someone please tell me whose inane idea it is to have parents pay for the packages up front before getting to see the image?), but I'll hope they'll let me do it after-the-fact. 

And now we wait.  And revel in the happy stuff instead of dwelling on the note we got home from the AP today about her behavior... 

More on that another time.  Little stinker...

Awarded!!

Oh, goodness, I'm really honored to have been awarded the Liebster Award by Rochelle over at The Cannon Chronicles!  I'm always so horrible at following through on these things, but can never get enough of reading them on other peoples' blogs - we learn so much from people by reading what they write on a daily basis, but there are still so many things we have absolutely no clue about.  With the simple questions she asked me below, maybe you'll learn a bit more about me.  I can't promise you any of it will be even remotely interesting, but I'll sure try.  :-)  Thank you, Rochelle!


1.  Why did you start blogging?

I started blogging because I wanted to let family and friends know what we were up to.  Samantha was about a year old, and I began to realize that she was starting to do exciting things, her personality was shining, and I had a lot to say about that.  As time went on, the blog evolved and developed a bit more depth.

2.  What is your passion that you want your readers to get out of your blogging?

That I love my kid more than anything in the whole world.

3.  What are some of your favorite blogs to read?

Oh, dear - this is a tough one!  I've slacked on my blog reading a lot lately.  There are a lot that I love, though.  I guess the ones I like best these days are Garden of Egan (Leah blogs about her 4 children with Down syndrome, one biological, 3 adopted, and I am completely riveted by her descriptions of the processes of bringing each child home from Serbia and introducing them to family, structure, and love.  It's really amazing watching each personality unfold, each transformation they all undergo) and Our Little Chilli Tribe (Jenny has a gorgeous family, and her youngest child, Russell, has Ds.  She's not afraid to tell it like it is, and her journey over the last few years has been pretty remarkable, going from frustration and sadness to acceptance and joy.  Her writing is raw and heartfelt, and her photos of life on the ranch get me every time.)

4.  What is your favorite singer/band? why?

While I never had any sort of affinity for it in the past, I'm currently trying to listen to more pop music in the car, trying to introduce Samantha to popular culture so she can have a chance at understanding the things her peers are talking about.  My long-term favorite band is The Cramps.  If you're not familiar with them, I won't say more - you can investigate for yourself.  If you are familiar with them, I'll just say that Lux is missed.  :-(  My current pop-music favorite is, shockingly, Rihanna.  Oh, and Justin Timberlake (love his old-school style!  Takes me back to 1983...).  And I love that song, "Royals," by Lorde, but I don't know anything else by her (did you know she's only 17???). 

5.  If you could have dinner with anyone who would it be and why?

From the time I was about 14, I always said I wanted to have dinner with David Bowie.  And it's not like I listen to him regularly anymore - on the contrary - I have absolutely no idea what he's put out there in the last, uh, two decades, but I still think he'd be an awesome dinner companion - such a fascinating man who has got to have some pretty incredible stories to tell. 

6.  What is the best decision you ever made?

Moving to the town we live in now.  We could not possibly have picked a better place to raise Samantha.  We moved here when she was 3, and have never looked back.  It's safe, it's got amazing amenities and is close to so much great stuff for kids and adults!  The school system is fantastic, and there just happens to be a huge Down syndrome population here, too. 

7.  What is something you wish everyone knew about you?

I'm actually pretty shy.  Shocking.  I'm one of those people who can fake it pretty well, but then, in my nervousness, I'll say something completely stupid, and wonder, "why the hell did I just say that??"  And, of course, whoever heard it would be thinking, "what's up with her?"  Yep, I'm that person.

8.  If you won the lottery what would you do with the money?

Probably just pay off the bills, donate a bunch to several worthy causes, buy a fancy camera lens, buy a fancy house on a beach somewhere exotic, buy a fancy house in my own town, buy a fancy house in England, buy my parents fancy houses,  and hire someone to clean all of them.  And then invest the rest.  I'm not a very extravagant person, and have little interest in cars, jewelry, etc.  My husband may have something a little different about how the money is spent, though...I suspect his would involve cars, buying a soccer (sorry, football) team in England, and starting a fish and chips business somewhere here in the US, something that's sorely lacking in his opinion.

 9.  What are your hobbies?

Taking photos, editing photos, writing my blog.  That's about it.  However, if I won the lottery, I'm sure I'd take up a whole bunch of new hobbies!

 10. What drives you?

Let's just say who drives me.  LOL  My husband, who didn't get his driver's license until Samantha was born, was too afraid to drive so for 15 years I did all the driving.  While I love to drive, it was starting to get a bit old.  But the minute he got his license he got a huge amount of confidence and now insists on driving everywhere.  He's a great driver, too. 

What drives me?  Okay, Samantha does.  Knowing that everything I do is for her. 

So now I have to nominate a couple of others for the Liebster Award.  No doubt about it, I'm going with Jenny (Our Little Chilli Tribe) and Leah (Garden of Egan).  Here are some questions for the two of you!

1.  How would you describe your blog?
2.  What are your favorite TV shows?
3.  Describe yourself with 3 adjectives.
4.  What's in your fridge right now?
5.  Who has had the biggest influence on your life and why?
6.  You have a genie in a bottle ready to grant 3 personal wishes, just for you - what would they be?
7.  What would you change about yourself?
8.  Who's the celebrity you'd most like to meet?
9.  What accomplishment are you most proud of?
10.  What's your favorite easy recipe that doesn't require ingredients that wouldn't ordinarily live in your cabinets?

Irrational Fears and... Part 3: The 11th and 12th Swim Lessons

Continuing my "Irrational Fears and..." series, which began with a post about fear of the dentist and continued with a post about fear of the doctor, I now am writing about a fear of the water...sort of.

Sammi has always loved the water.  So much so, that I was terrified that she would never understand the dangers and the need for boundaries when it comes to being safe vs. jumping in without a second thought.  I had always intended to put her into swim lessons, but was too afraid to, because, until very recently, she didn't know how to hold her breath and had no clue how to *not* breathe in when water hit her face.  Sputtering and choking was always the inevitable outcome, and I was discouraged, disappointed, and nervous about her future safe enjoyment of water.  For years I had been reading stories about people with Down syndrome on their Special Olympics swim team, or swimming Lake Tahoe, or just being real fish when it comes to water.  I wanted that for Samantha.

Just two summers ago, she had even gotten brave enough to jump off the side of the pool and into my waiting arms again...and again...and again...  This actually made me more nervous, but I was pleased that she enjoyed it.  This past winter I finally got off my duff, shelled out the prohibitive fee for a series of sessions, and finally signed her up for swim lessons.  Private lessons, because she needed that 1:1, at least until she was able to be safe in the water independently for a few minutes at a time.  I figured once she was able to hold her breath and, perhaps, doggie paddle, I could switch up to the slightly-less-expensive and more motivating (due to peer modeling) semi-private or group lessons.  After some scheduling snafus, we finally had an instructor and began her lessons on Sunday afternoons. 

I knew at the beginning that even though Samantha refused to let go of the instructor's neck and only just barely did anything she asked her to do, that given enough time and patience, she would eventually come around and relax a little, and would actually learn something.  But, after about 5 lessons, nothing had changed except my wallet was a little bit lighter, and, on 2 occasions, Sammi had actually done that jump-off-the-side-of-the-pool thing for her.  It was discouraging, but around that time the instructor informed us that she was moving away, to another state.  I liked her, but who knows how Samantha felt about her?  Perhaps the fit just wasn't right and that was holding her back.

We were assigned a new instructor, a very sweet high school girl, who really knows her stuff.  Actually, I didn't know she was in high school, nor would I have ever suspected it, until we'd seen her a number of times and she mentioned looking at colleges.  Hahaha, boy, do I feel old!!  She was great with Samantha, and Sammi actually seemed to do more with her than she'd ever done with the previous instructor.  Score!! 

Except...

Soon after, she began to show real resistance to even getting into the water.  It took the bulk of each lesson just to coax her in.  Once they did get in, Sammi was content to just do the exact same things they'd done time and time again at previous lessons, refusing, with both a howl and real tears, to try anything new. 

And then...not even that.  She was regressing.  We never saw her jump off the side of the pool again.  She stopped holding onto the floating barbell and kicking.  She increased her death grip on the instructor, crying any time even the slightest suggestion was made to remove a hand to hold some sort of float. 

Then she stopped going into the water altogether.

I tried everything.  Leaving the pool area so Sammi couldn't see me, hoping that without the Great Enabler there she'd do better.  Getting in the pool with her.  Everything.  Sammi had gone from talking excitedly about going to her swimming lesson all week long to saying she didn't want to do it at all.     

It got ugly. 

As a matter of fact, the last two lessons, her 11th and 12th, for the record, the instructor was kind enough to not charge us, thankfully.  And, at that point, I decided we needed a break.  A break from what, I don't really know.  She's always had her lessons at an indoor pool.  On her last lesson, we tried her with one of the outdoor pools.  Same issue.  No dice.  She and I go to pools from time to time together, and, while she won't let go of me, she still enjoys being in the water.  She even still loves to hold her breath and blow bubbles in her bath, so excited for me to watch, and trust me, I'm really excited that she's finally figured out how to hold her breath!  At least one hurdle has been covered. 

I just don't know what happened.  Was it because I have been telling her how important it is for her to learn to swim so she can be safe in and near the water?  Did she suddenly start to view the water as an unsafe environment rather than the fun place to spend time?  Is it just one of those random, weird, completely irrational fears that's cropped up for no reason (and is that even possible?)?  Will she ever want to try again?  Most importantly, will she ever learn to swim?  

I'm fully paid up for a 5-lesson series right now, just waiting until we are ready to try again.  I don't want to push her, but I also want to find her triggers.  Any advice from any of you?  I'd love to hear it...  I have another Irrational Fears and... post coming one of these days soon about my child's inability to have fun (don't look so surprised!).  Go figure...

On another note, please remember to visit my post from yesterday for a chance to win a great Betty Crocker prize pack!  It's easy, and is running through next Wednesday.  :-)