Day 31: It's Never Over!

Whoa, I didn't mean to make this 31 for 21 blogging sound like a chore...  I've really enjoyed it, and have truly surpassed my own expectations by making it to the end.  That being said, it's never truly over.  I will continue writing like I always have, perhaps just not every day.

I started out strong, making notes of new posts I wanted to write, then fleshing them out when I had time.  At one point I had about 5 saved posts, just waiting for me to hit "Publish."  Now I have none.  Just in time.  But I think if I just created a post that said nothing more than, "Nope...got nothing," I'd look like a real jerk.  Soooo...it was my goal to figure out something to talk about, even if it had little substance. 

Blogging for awareness during this month, Down Syndrome Awareness Month, has opened my eyes to so much.  I have dug deep, looking for answers, celebrating my daughter, celebrating other people with that extra something.  I've learned a lot about myself and my goals for Samantha, and I've learned a lot about other people by reading their blogs.  I don't know if I gained any new readers, but I hope I provided food for thought or, perhaps, entertainment for all (or at least most) of you.

"I had planned last year on doing the 31 for 21 blogging for October being Down Syndrome Awareness Month, but never managed to pull it off. There is always next year."

That's what I wrote in my first blog post of November last year. Indeed!

And again, there is always next year.  Thanks for joining me on the ride!

Day 30: The 2011 DSANV Calendar, "Moments...", is Available

The 2011 Down Syndrome Association of Northern Virginia calendar, "Moments..." is available for purchase!  Actually, it's been available for about a month, but there have been some technical difficulties with the ordering portion of the website, so I waited to mention it on my blog.  'Tis the season for the perfect holiday gift, the joy of seeing these beautiful, chromosomally-enhanced faces ushering in each month. 

If you would like to order, please e-mail calendars@dsanv.org for check-sending instructions.  This same information is also available on the DSANV's website, http://www.dsanv.org/. 

In the meantime, enjoy a little sneak-peek!!

Day 29: Happiness Is...

...a girl and her scooter...

Day 28: The Others

I was honored by being asked to write a Guest Post for Our Typical Life the other day.  Thank you, Beth, for the opportunity!  Here's what I wrote:

 My beautiful little princess, at a mere 4 years old, has taught me more than I could have ever imagined in this short span of time.

I find it so interesting how, in the course of my “education,” I have not yet found a parent of a child with Down syndrome who did not eventually, within a relatively short period of time, come to love and accept their child; whose child has not brought light and understanding and joy to that parent’s life and the lives of those around them. I have not yet found a person who wasn’t changed in so many ways for the better by their child with Down syndrome. While there are still so many children out there with true medical issues, whose care and well-being rely very heavily on their parents’ time, patience, emotions and finances, those parents that I have come across still love their children unconditionally, and acknowledge the joy they have experienced through them. (Disclaimer: I do acknowledge that there are those that have given their children up for adoption, or whose families have shunned them following the birth, but I’m not referring to those situations here.)

I’m sure the ones who are not so accepting must be out there somewhere, but I imagine that those must be the ones we never hear about, the ones that don’t attend the local DSA events or post on message boards, and I imagine they’re certainly not blogging. I’ve seen people in a transitional phase, who are using blogs as a means to sort out their lingering feelings of fear and confusion. And I applaud them for their honesty, and enjoy watching their transformations, like butterflies emerging from cocoons. It’s really a beautiful sight. But where are those others? The idealist and the mother in me can’t believe that they actually exist. That they would forever be blind to the beauty, unconditional love, and potential of the child that stands before them. Likewise, have there ever been those whose hearts were hardened to people that were in any way “different” prior to giving birth to a child with a diagnosis, whose minds were changed as soon as they acknowledged their own flesh and blood and discovered the beauty of a child?

Again, I can’t believe they actually exist, although the realist in me knows they must. But what I can say from my “education” is that my daughter, and each one of the 1 in 733 out there that carry an extra 21st chromosome, are the most beautiful people, inside and out, to walk on this planet. I know that I would never change Samantha, and hope that she can make such a positive impact on the lives of everyone we meet, spreading the warmth that she radiates, teaching the lessons that we learn, fixing those that are broken. Sounds lofty for a 4 year old, but if she can teach so much to me in this short span of time, think about what she can send out into the world in her lifetime!

Day 27: Wednesday Whimsy: Baby's Bathtime

(Notice how I call it Wednesday Whimsy solely so I can sneak a few words in?)

I admit it, on Sunday we were particularly lazy, not changing from our jammies until nearly noon.  And I also admit that I rarely dress Samantha in coordinated pajamas.  I don't really see the point in buying pricey PJs that nobody but her stuffed animals sees, so I just put her in a pair of old leggings and a t-shirt.  It's sweats or the occasional pair of fleece pajamas that I do have for her if it's particularly cold. 

So, back to Sunday, Samantha decided that she wanted to give baby a bath.  Finding a damp washcloth on the sink, got into the tub, and washed baby.  Then it was her turn, so she proceeded to strip all the way down and wash herself with the same coooold, damp washcloth.  "Brrrr...it's cold, Mommy!"  she said.  Sadly, I missed some of those pics, but they probably wouldn't have been appropriate here anyway.

Day 26: What's in a Name? A Little Random (hopefully-not-too-dull) Knowledge

Most of you are probably familiar with Woodbine House publishing.  If you are not, Woodbine House publishes books that take up prime real estate on the bookshelves, coffee tables and nightstands of parents of children with special needs, from Down syndrome to depression, autism to ADHD, celiac disease to cerebral palsy, sensory processing disorder to spina bifida.  They provide a lifeline for parents and educators to learn how best to work with special kids to help them reach their full potentials.  Some of the notable titles on our shelves at home include Early Communication Skills for Children with Down Syndrome, Fine Motor Skills for Children with Down Syndrome, Gifts, and Down Syndrome:  The First 18 Months.

Fewer of you are familiar with the Vineland Adaptive Behavior Scales.  This is a method to measure someone's adaptive behavior, or how they do certain things in their everyday life as they pertain to social and personal sufficiency (think of life skills), as opposed to what they are actually able to do.  Now I'm certainly no expert on this, and am not sure if this sort of evaluation goes on regularly in the classroom and in more clinical settings for our kids, or if it's something that is formally presented to the parents as needing their permission.  Whichever, it is still something that I've heard mentioned in reference to our children, and can certainly see how this is a useful tool for educators.

I'm willing to bet that almost none of you knew that Woodbine and Vineland are two towns in South Jersey, each a mere 20-or-so miles from each other, neighbors to the beach, suburbs to Philadelphia. .  And that both of these towns were pretty notable over the last century or so for each having a large State School, or Development Center, or, dare I say it, institution, although that may be too strong a word with connotations more negative than are warranted.  I don't know.  The one in Woodbine was created in 1921 and called the Woodbine Development Center, an intermediate care facility for developmentally disabled men and boys.  The one in Vineland is called The Vineland Training School, originally called "The New Jersey Home for the Education and Care of Feebleminded Children" in 1888.  Pearl S. Buck placed her daughter at the Vineland Training School.  Both facilities are still in operation today, and you can find an interesting history of the Vineland school here.

I do know that the Vineland Scales get their origin from the Vineland Training School.  I'm not able to find the name origin of Woodbine House tracing back to the Woodbine Development Center, although I'm pretty sure this is the case.  There's a company called Woodbine, Inc. that's based out of Canada (in some town whose name I can't pronounce or even spell, for that matter) that provides opportunities for people with intellectual disabilities.  Coincidental?

At any rate, also coincidentally, I grew up in Vineland, New Jersey, and my father grew up in Woodbine, New Jersey.  I always knew about the "state schools," as we called them, but they were a bit mysterious to me and my friends.  We could view the rolling green campus housed behind a tall wrought iron fence, see the residents strolling arm in arm with uniformed nurses, being pushed in wheelchairs, or sitting in the gazebos.  Mysterious, but not menacing.  There was nothing dark or sinister about either place, and in the case of Woodbine (perhaps Vineland, too, although I don't have any knowledge of this myself), some residents were permitted to leave from time to time to work jobs in the town.  My uncle tells of "Tony," a 40-something-year-old gentleman with Down syndrome who used to ride around the town on his bicycle.  I find this both odd and refreshing.  Odd because the expected lifespan for someone with Down syndrome at that time (in the 1960s) was pretty short and because riding a bike would have been one heck of a challenge.  Refreshing because, well, you know why.  :-)

Sorry for the rambling post, but I have nearly run out of things to talk about this month and thought you might enjoy a bit of random trivia.    

Day 25: Birth of a Jack O'Lantern

Day 24: Happy Birthday Mom Mom

My Mom Mom was born on this day back in 1921.  She passed away in 2004 after a long battle with Alzheimer's, but had she lived, she would have been 89 today.

She was the strong-type grandmother that you thought would live forever.  She worked her whole life, as a beautician in her early years then owning and running a grocery store/butcher shop with my grandfather until they retired.  She had three boys - my father and my two uncles, and loved to host large family gathering for which she prepared the most amazing home-cooked meals.  She was the classic Jewish grandmother, doting on you when you were sick, making the most perfect chicken-matzoh-ball soup that could banish any illness that may have plagued you.  She spoke in Yiddish in moments of greatest import, to express anger or to bestow affection.  I still hear the occasional word in random places, which makes me pause to remember how it sounded coming from her.

She never met Samantha.  I think about this sad fact often.  I know precisely how she would have loved her and doted on her, as she did me and my cousins.  Samantha is the first (and only, still at this point) great-grandchild, and I remember Mom Mom saying often how much she wanted one.  I am sad that she never had that chance, especially given how much Samantha looks like her.  I see it every day.

So happy birthday, Mom Mom.  I like to think that you can see this beautiful girl I brought into the world and that you can occasionally let her know that you are there with her, so she can have the good fortune to know you, too.

Day 23: My Facebook Family

I feel a Technology Trip Down Memory Lane coming on here...for having lived across four decades and watching how spectacularly the technology has changed and become a part of our daily lives, I feel like I could go on and on about this subject.  I work in an office of relatively young tech folks, many of whom are in their 20s.  That means that, on average, most of them were born in (gasp) 1985!!!  This was one year before I graduated high school.  They would never have seen rotary-dial telephones, black & white televisions, 8-track tapes.  They would only have purchased cds, wouldn't have blinked at owning a cell phone (when they were old enough) or a personal computer.

We were relatively bold when it came to technology in the early 90s.  We were given our first computer, an old word processor, by my mother when she was done with it.  It did little more than process words (but oh, what I would have given to have been able to use that to write papers in college!!), but it did come with two very, very basic and highly-pixelated games loaded on it - Jeopardy and Strip Poker.  Both games were amusing, and revolutionary to us, as simplistic as they were.  The day that Steve beat the machine at Strip Poker, it packed itself in and crashed, presumably in anger at having been bested.  So we bought our first new computer, loaded with all of the most amazing, free (and not so free)-time-sucking functions, including AOL.  Social networking here we come!! 

So, in point with my post title, while we picked up on technology relatively late age-wise, I am so grateful for having been a part of the internet revolution, and the rise of the social network in the time before Samantha was born.  I may have posted this before, but I truly don't know how we would have found the information and contacts that we rely so heavily on if Samantha had been born in 1991, when Steve and I got married.  Having a child with Down syndrome, or any disability or health issue, would have been a truly isolating experience without the ability to sit down in front of a keyboard and type in a few easy keywords to find the answers we sought. 

Which brings me to my Facebook Family.  Some people I know really don't get Facebook.  They don't see the value in it, or the need for it.  Like my father, for instance.  Not like he's part of a lost generation, because he isn't.  He's a technology-savvy as the rest of us (mostly), but thinks Facebook, a world full of strangers interacting and learning about you, is a pretty dodgy (that's, ummm, dicey (?) in Americanspeak - one of those Britishisms that I've always found much more suited to the point that I'm trying to convey than any other English or American term) place.  Why would I let these people into my life, why would I call them "friends?"  And he's right about one point, if you want to get technical...most of them are not my friends.  Actually, I may not have ever had any interaction at all with them, but the Facebook term is "friend," so that's the term I use to describe them.  Another reason people don't "get" Facebook is that they think they'll have to read and respond to everyone's status updates.  This is sooooooo not true.  While, to someone that only has 50 Facebook "friends," it looks like I am constantly babbling (drowning out the silence from many of the others), to someone that has 1,000, I'm just a measly drop in the pan, probably lost in the sea of chatter.  And that's fine!  Just knowing that people are there when you need them is the joy of Facebook.

And need them, we do.  Whether it's to bounce ideas off of when there's an issue (school issues, health issues, behavior issues), having others to celebrate the milestones, or soliciting ideas (for developmental toys, birthday presents, even what to make for dinner!), my Facebook Friends have been there for me, and I for them.

I posted a status update late lastnight, lamenting the fact that I didn't have anything to write about today in my quest to fulfill 31 for 21 this month.  I got more than a dozen replies, all with amazing ideas!  And some of the bloggers that were reading those ideas were also inspired by them.  And that, folks, in itself, was blog fodder.  I think I am now better prepared for some future posts, and I certainly found my subject for this one.

Thank you all (yes, all you strangers out there in Facebook Land) for being my "friends." 

Day 22: On Adoption, Part II: The Cornish Adoption Journey

Meet Meredith and Michael.  If you don't know them from their blog, Cornish Adoption Journey, these are two of the most giving, selfless, big-hearted people you'll ever hear about, and they epitomize all that is good about adoption.  I began following their blog nearly 3 years ago, just before they departed for Eastern Europe to adopt two children with Down syndrome.  Since then they have added to their family, making sacrifices most people can't even begin to fathom.  I won't say more, since they tell their amazing story themselves in the video below. 

Please visit their blog to see how you can help them give a loving and secure home to two (hopefully!) more children destined to a brief and horrific life, and imminent death, inside an institution so far away.

Make video montages at www.OneTrueMedia.com

Day 21: Okay, Here are a Few More (Unusual) Myths for Ya...

Okay, so this post may be a bit "out there" and you'll probably be chastising me privately (or publicly - hey, there's room for comments!) for not doing my research first, but since so many Ds blogs out there are posting the myths and realities of Down syndrome this month, here are a few more for ya - two odd myths I've heard about people with Down syndrome that I'm inclined to believe, although they're a little, um, unusual, and obviously open to either interpretation (the nice version) or total disbelief ("where the heck did you get that??")...  Holy crap, was that seriously only one run-on sentence?  I can almost sense all of my English-Teachers-Past rolling their eyes and sighing in acknowledgement of their failure right now.

**People with Down syndrome are more likely to have straight hair.  Really.  Just think about it...have you ever seen someone with Down syndrome that has curly hair?  I have seen very few with wavy hair, but no curls.  And this may vary by race, but if you're strictly polling caucasians, this is what I'm finding.  I wonder if there is something unusual about the hair of people of other races with Ds, too.  Samantha's hair is super-straight.  And fine.  If I braid it and it stays in braids all day and even overnight, it only takes a few short hours of not being in the braids for all the glorious, shiny crimpy waves to fall out and her hair to return to it's stick-straight resting state. 

**People with Down syndrome may be more likely to have blue eyes (although this is certainly not always the case...keep reading).  I seriously can't remember where I heard this, or how credible it may be, but I can't help to think that it may be true.  Does that extra chromosome find that recessive blue gene and bring it to the forefront?  I remember, from 6th grade science, that you have to have 2 blues (one from your father and one from your mother) to make a blue.  Or a green.  Or a hazel.  Or, really, anything but brown.  Meaning, that somewhere in the family trees and genetic make-ups of both the father and the mother, there are family  members (distant or otherwise) that made their mark on the blood lines by having blue eyes.  And if science is correct (as it invariably is), this had to have gone all the way back to the beginning.  To the very first two cavemen to walk the earth, right?  Now, I'm certainly no scientist, so I can't account for mutations and environmental modifications over time, but theoretically this is correct, right?  Now I'm getting off my track here...my point being, that the extra chromosome may dictate a dominance by that blue gene.  I don't know of any people in my family with blue eyes.  I think there are some hazels back a way on both sides, but no blues.  This means there had to have been blues somewhere, though.  Steve's family is predominantly blue, so there's no question there.  I'd venture a guess that any child of ours would be more likely to have brown eyes, since brown dominates my family into the visible past, right? 

But Samantha has absolutely gorgeous, brilliant blue eyes.  Really?  This child is mine??  Wow!!  And wow again, every time I think about how unusual that must be.  (Okay, armchair scientists, and even real scientists - please stop laughing and set me straight?)  I just tried Googling this and came up with...nothing.  I think I may be just making this up as I go along.  Made you all think, though, right?

And please add any other unusual physical myths you may have heard over the years (other than the usual Bruschfield spots, palmar creases, etc. that fill the Ds medical journals).

Day 20: Wordless Wednesday

Day 19: On Adoption: Agreeing to Disagree

I had a friend in high school with whom I lost touch for many years, reconnecting again some time ago.  A lot had changed - she had since given birth to a baby while in college and given him up for adoption, and was currently undergoing radical surgery to save her life from a rare cancer that had spread through many crucial internal organs.  We spent some time together, visiting, corresponding, talking on the phone.  The surgery saw to it that she would never have the energy to be able to re-join the work force, and she was putting her creative energies into positive outlets, like writing and art.  She shared with me her pain in giving up her little boy at his birth, and told me of her attempts to contact him over the years, including a visit to him at his school.  She was convinced that his adoptive family was cruel and emotionally abusive.  Perhaps they were, or perhaps his stories were those so typical of an angry pre-teen who viewed a revocation of his privileges as a serious grievance.  I don't know.

With so much time on her hands as she recovered, she turned to the internet as a source of information and support on why adoption is always bad and how to get your kid back once they have been placed up for adoption.  She sought advice from advocates all over the world and searched legal documents.  I listened as she outlined her plans and voiced her opinions on the evils of adoption.  I couldn't respond.  My baby brother was adopted, given up by his 16-year old birth mother on the day he was born to two wonderful, loving parents, my father and my step-mother.  He was a typical kid growing up, well-adjusted, normal.  I could never speak against something that works. 

My friend and I drifted apart again, letting a few more years slip by.  We lived several states away from each other.  I was busy with my hectic career in retail.  I had a baby.  I e-mailed her and we reconnected again a year or two ago.  This time, she stated that her son was coming to live with her, and she was putting him through college.  She went off on another diatribe in her message to me about how bad adoption is.  I responded to her that my experience was very different, citing my brother as an example (I don't think I knew about Reece's Rainbow yet at that point).  I felt the desperation in her as she tried to force her point on me and wanted to somehow salvage our friendship, so I suggested that we drop the subject and agree to disagree, moving on with the other aspects of our lives. 

I didn't hear from her again.  I almost wasn't surprised, but not really.  I did contact her again about 6 months ago, hoping she could see past her stubbornness and let it go, but the conversation was strained, and I realized that some efforts are just not worth it when someone else is unwilling to try to make it work.  Her son was, indeed, living with her.  I didn't ask her too much about the details, but she seemed happy with the situation.  I'm glad she is happy.  I'm sad for her negative view on adoption, an institution that really does work.  Not in all cases, but in most.

And I think about Reece's Rainbow, and how many times I have cried looking at the faces of those beautiful, unwanted children, unwanted because of their extra chromosome.  About all of those families with whom I have connected through blogging and Facebook who have brought some of those children home, to loving families, before they could become doomed to an unimaginable life inside an institution somewhere in the world, dying so young of neglect.

I'm willing to agree to disagree, but will not stop hoping that one day she might change her mind and in turn change others' minds.  Perhaps that change of one mind will lead to a change of events that will result in the adoption of even just one child that needed a home, needed a family, needed security and love.  I don't know if she reads my blog.  She might.  I know she had the address at one time.  I hope she does.

Day 18: A Pure and Giving Heart

I'm reasonably certain that I and many other people with children with Down syndrome have thoroughly dispelled the myth that people with Down syndrome are always happy.  We know first-hand that this is most certainly not the case.  Just take a look at my post a week or so ago, "Trying Too Hard."  I'm pretty sure those first two photos spoke volumes against that. 

One thing that I do believe about our kids (please correct me if you think I'm wrong) is that they have innately pure and giving hearts.  Certainly, my daughter is only 4 years old.  And there's something pure and giving about most 4 year olds, I'm sure.  But it's different somehow.  Here's an example...

Samantha and I drove up to New Jersey this weekend to visit some friends and my family.  Yesterday, on our way back home, we stopped in to see my grandmother, who is in an assisted living home.  My aunt came with us, because I wasn't too sure my grandmother would recognize me, and I felt that having that familiar presence, the person who visits her regularly and often, would help any disorientation.  As it is, I'm not sure she really did recognize me, but she's pretty good at faking it, accepting that we were there, and truly enjoying watching Samantha wander around her room, moving stuffed animals from their places on her couch to her bed, pretending to put them down for a nap, or picking up her phone and pretending to have a conversation with someone.  We didn't stay very long, as Samantha was very tired and cranky, overdue for the nap I hoped she'd have on the long car ride home, but I was so glad we got to see my grandmother.  It's been too long.  

As Sammi and I passed through the lobby of the building, there were a number of residents, perhaps 7 or 8, sitting on chairs and couches in front of a fire (!! It was 75 degress outside!!).  I could hear them remarking to each other how cute Samantha was, and I felt a need to make a difference in their day no matter how fleeting.  I pulled Samantha after me, and as I entered the circle, saw their faces light up when I let go of her hand and asked her to go say hello to everyone.  And, one by one, she did just that.  She walked up to each person, flashed her sweetest, most heart-melting smile, said hello, and leaned in for a hug.  And, one by one, the residents smiled, perhaps recalling their own great-grandchildren.  One said, "How did you get her to be so friendly?  Most kids her age just aren't interested."  That made me a little sad, but absolutely thrilled on the inside that Samantha could brighten the day of so many other people who really needed her little shining light.  Hey, who needs therapy dogs when we've got a sweet little 4 year old with an extra chromosome?  

I was unable to get any photos of the "meet and greet" in the great room because I was too busy keeping Samantha's hands out of the personal belongings stored in the baskets affixed to every walker or wheelchair she passed.  Below is a photo of Samantha and me with Gamie (as she's always been called, possibly from one of my older cousins who was unable to say "Gramma" as a child).  

Hey, I think there's an extra stuffed toy that doesn't belong in that basket! Can any of you spot Sammi's naked Olivia?

(Funny, quick story about Olivia this weekend - we went to the zoo on Saturday, and as we were walking around, Samantha suddenly said, insistently, "Olivia!" I thought she wanted the stuffed doll I had with me in my bag, kept at all times for emergencies. But nooooo, Sammi wrenched herself free from my grip on her hand, ran up to a man who was walking with his little girl who looked to be about her age, and grabbed something out of his hand - a clothed Olivia doll, just like hers! The little girl (who happened to be dressed similarly to her doll) was not too happy about the snatching, and Samantha was only soothed when I pulled her own Olivia out of my bag. I was pretty proud of myself, feeling like a very well-prepared mom.)

Day 17: Love Knows No Differences: Monica and David

The Down syndrome world (at least here in our self-centered US portion of the world) was alight on Thursday night with the HBO premier of the film, "Monica and David."  The movie, winner of Best Documentary at this year's Tribeca Film Festival, had previously premiered at a local theater here for a one-night showing and had also been shown at this summer's NDSC convention in Orlando, neither of which I was able to attend, so I was really looking forward to it.  I was also somewhat surprised to note that the buzz surrounding it extended well beyond the Ds community.  Newsweek published a glowing review and even my father called me to tell me that the film was going to be on (yep, I know, Dad!).

I went over to a friend's house to watch it, thinking that I'd save myself the embarrassment of crying (if necessary) in front of my husband.  It's much easier to do that in the company of a girlfriend.  Surprisingly, we both stayed pretty dry-eyed (although Steve watched it on his own and reported a water droplet or two).  Not because it wasn't touching, because it was.  I think it was more that it didn't dress up those touching moments with background music or slow motion or all that frou frou stuff you usually get in fiction films, and even, occasionally, in documentaries such as this.  The film remained pretty objective, which certainly helped me to do the same.

Monica and David, for those of you that don't know, are a young couple with Down syndrome who fell in love and got married a few years ago.  Monica's cousin, I believe, directed the documentary, and it follows the days leading up to the wedding and the everyday life they lead afterwards.  I won't give any of it away, but will say that they both have strong, supportive parents caring for them, who may have been somewhat detrimental to their social and independent development in their over-protectiveness as they grew up.  I know that 35 years ago, things were so very different, and protecting their children from what was a much more harsh world for people with intellectual disabilities was all they could do.

I'll leave it at that for now, and just urge any of you who did not get a chance to watch it, to do so when you can.

Day 16: NDSS Buddy Walk PSA

Please view the new (?) Buddy Walk PSA from the National Down Syndrome Society (NDSS), being shown in Regal Cinemas.  It's short and sweet and to-the-point (just like this post today!), and uses much-needed celebrity status to help raise awareness. 

Day 15: The Typicalness of Friendship

I just love hearing about Samantha's friends at school, in particular her "typical" school.  Steve drops her off and picks her up from there on the two days a week she attends, and it's just so heartening to hear him recount a conversation he's had with a teacher, parent or child. 

A few weeks back (did I blog about this one already?) Samantha came home with a beaded friendship bracelet with her name on it.  When asked, the teacher said that another little girl in an adjoining classroom had made it for her and that they often played together.  We ran into this little girl with her mother and her brother at the supermarket one day (her brother recognized Samantha), and the excitement the two little girls had to see each other just made me melt.  They danced around in circles, the other girl tickling Samantha, and Samantha giggling hysterically.  It was a really sweet moment, particularly for us.  The mother told us that her daughter was insistent that she make the bracelet for her friend, and that it took her two days to do it.  I hoped that the mother didn't see my eyes tear up...

Then the other day, one of the mothers Steve saw when he want to pick up Sammi told him that her daughter was always talking about a little girl at school, Samantha, and about how pretty she is. 

Yep, she sure is.

Day 14: Thursday Thoughts: Rainy Day (school) Rant

Sorry if this gets a little long.  As most of you probably know, I have filtering issues, and am incapable of making a short story short.  Either that, or I just like to hear myself type. 

We had a little situation at Samantha's public school yesterday.  Not one that anyone else would have noticed, but one that really, really ticked us off.  

As is the case for most preschoolers, I believe, Samantha gets a sheet of paper home from school in her backpack that details some of what they did each day.  It's very helpful to read, as it lets us know of any issues, or it allows us to talk with her about a particular activity they may have worked on.  It also lets us know if she used the potty by herself and whether or not she ate the snack we packed for her. 

Every day Samantha eats breakfast before school.  We send a snack for her to eat at snack time (@9:30am, I believe), and since they eat lunch at about 11am (too early in our opinion), we send a yogurt for her to eat during "lunch" time (she comes home at noon, takes a nap, and gets a real lunch when she wakes up).  A few weeks ago we received a communication from her teacher on that sheet in her backpack that stated that since Samantha did not ask for her yogurt at lunch time when told she needed to ask for it, they didn't give it to her.  We were a little miffed by this, and her yogurt did not come home in her backpack, so we thought perhaps they had eventually given it to her after all.  Now we both know that Samantha is perfectly capable of asking for her yogurt, as she asks us for it frequently. We both also know that Samantha is just being stubborn. She's 4 - that happens.  The harder you push her to do something, the more likely she is to dig in her heels and flat-out refuse. Like saying "I'm sorry." She used to say it any time she knew she'd done something wrong, but now she's at a point where she refuses to acknowledge that she's done anything wrong, and feels too ashamed to say "I'm sorry," so she's practically pushed it completely out of her vocabulary. We're working hard on that one...

A few days later the teacher came for a scheduled home visit, where she mentioned that they were requesting that the students ask for the food before they would give it to them.  Steve responded to this by telling her he was all for placing this responsibility on the children, but that he didn't agree with the idea of withholding their lunches.  He suggested that they prompt Samantha with picture cards, then just give her the food if she still doesn't ask.  (I know this doesn't reinforce the desired positive behavior, but we're talking about food.)  The teacher agreed. 

Nothing else was said about this, and no further notes came home that indicated this was an issue.

Until yesterday.

Samantha got off the school bus and immediately told Steve she wanted a peanut butter and jelly sandwich.  Thinking she couldn't possibly be hungry after her snack, he told her no, she'd have to nap first then could have the sandwich when she woke up.  So she slept.  While she slept, he emptied her backpack and found the yogurt (now warm and unusable) that we had sent to school this morning.  The communication sheet stated once again that Samantha refused to ask for her yogurt, so they didn't give it to her.

There are so many things wrong with this practice.  To start with, this is a special needs classroom.  Many of these children have moderate to severe speech and language delays.  Additionally, many of them have medical issues, and eating certain foods at certain times is pretty darned important.  Yogurt helps with Samantha's constipation issues.  Also, this stinks because we rely on the fact that Samantha is going to have that yogurt as a snack so we create a schedule around it (yogurt at school, then nap at home, then lunch at home).  In yesterday's case, a poor, hungry little girl went to bed without having eaten and without being able to tell her daddy she didn't eat.  Last, but not least (and somewhat trivial, given the other issues we have with this whole concept), the yogurt was wasted. 

Steve was fuming.

He called the school's Vice Principal, who's the head of the Special Education department, and explained what happened, and what our concerns were.  The VP completely understood, and said he was heading down to the classroom that minute to speak with the teacher and that he would call Steve back to let him know the outcome. 

He didn't call back.

But the teacher did. 

Now, doesn't this just scream "confrontational?"  This teacher is a new teacher, one that is newly-certified after having been a substitute for many years, including for several months in Samantha's class last year while her main teacher was on maternity leave.  The jury's still out on our opinion of this teacher.  We're not getting the warm-and-fuzzy vibe from her like we did with Sammi's previous teachers, and I am willing to bet Samantha isn't getting that vibe from her, either.  If things don't change, I would be inclined to ask them to switch her to the other classroom (where one of her teachers from last year is now after the class was split in half), but her little BFF is in her class now and I hate the idea of separating them.

Oh, right, I went off on a tangent there...what I was getting at was that after the teacher called and accomplished nothing in her conversation with Steve, he was pretty ticked that the VP had not called him back himself.  So he got in the car and went to the school to speak to him directly.  They discussed it again in person, and established that going forward they'd try to get Samantha to ask for her food, then if she doesn't and all attempts fail, they'll put it in front of her.  If she doesn't want to eat, fine.  If she does, then it's there. 

Any thoughts on this?  Are we wrong?  Have any of your schools ever done anything like this?  I just think it's kinda weird.

Day 13: Wednesday Whimsy: The Good Kind of Selfish

This past weekend was probably one of the most beautiful weekends in many, many months.  I'm sure I've said that before, and probably not very long ago, but the more recent ones are the ones that stand out most brilliantly in our minds, right?  Anyway, it played host to brilliant sunshine and a welcomed absence of humidity.  We had no real plans laid out, other than to spend as much time outside as possible.  Well, that was my plan, anyway.  :-)  So while Steve did some stuff around the house and played soccer, Samantha and I managed to squeeze in four (4) playdates!  Sounds horribly selfish, I know!  But we accomplished so much - we got to spend time with great friends, enjoy the spectacular weather (vitamin D, anyone?), get a bit of exercise (3 playground visits!), and keep occupied (that's an important one to mommy, who spends most weekends trying to entertain Samantha and most weekdays trying to think of ways to entertain her on the upcoming weekend).  Thank you to our friends and playmates for spending time with us!

Here are a few photos of our fabulously selfish weekend.

Day 12: Bullying - When Will it End?

So the subject of bullying has come up in the news a lot lately. I’m not sure what has changed, or if it’s been sudden or gradual, but it sure seems sudden. And I don’t know if it has been due to one particular incident or just a general growing public awareness and increased social conscience. Every time I think about how public perception and the value people place on the well-being of other people has changed over the years, I can’t help thinking about two very prominent examples – one being the (by our standards) reprehensible joy people used to get when attending a public hanging or stoning, like it was a fun day out, an event to bring your kids and a picnic to. The other example is the placement of children, frighteningly young children, in the workhouses and factories of the Victorian era, letting them make their own way on the streets of the cities and face unimaginable horrors in the hazardous conditions of the workplace. What value was placed on human life and well-being then?  What a miserable place their world must have been.

But I digress. About bullying. Was this ever acceptable? Who said this was ever okay? Why is it just now changing legislation and being brought to such urgent attention? Perhaps it has to do with the growth of the computer age and the increase of cyber-bullying. Perhaps it has to do with the rash of suicides.  To be honest, I don’t care which has sparked the fire. I’m just glad it is reaching greater heights in the grand scheme of awareness and that hopefully something is seriously being done about it.

The story that came out recently that hit home the hardest, that stands out most in my mind and brings tears to my eyes every time I hear about it, is that of 12 year old Chatari Jones, a little girl with cerebral palsy who lives in Florida. After coming clean to her father about her fears of riding the school bus due to the bullying she suffered at the hands of several boys on the bus, her father boarded the vehicle and made his displeasure very well known. The incident was caught on camera as he shouted at the boys and at the bus driver for doing nothing to stop them. Her father was arrested, then released on bail.

I applaud him. And I applaud Chatari, who still has a difficult road ahead of her and who has not yet returned to school following the incident. I know what he did was wrong, but I really, really can’t help thinking this event may have really started something that will benefit SO many children, with and without disabilities. The statistics are staggering…25% of students report that they have been bullied. 85% of students with disabilities are reported bullied. Please visit BullyingInfo.org and see what is being done to effect change, and please watch this moving interview with Chatari and her family on the Today Show last week to hear their story.



When Samantha was born and we received her diagnosis, my first thought was, how will we protect her?  I still don't know the answer to that.  But until the social conscience of the people doing the bullying changes, until they can learn to value the feelings of others, much like the way our ancestors had to learn the value of human life and that stonings/hangings/children-in-workhouses are not fun things, bullying will continue.  Please think about what you can do to help make a difference, to make the public world around our children a safe, nurturing, loving and accepting place.

Day 11: Jumping on the Band Wagon

I’m not often one to follow the pack. I usually prefer to do my own thing, to like something because I like it, not because I want to impress someone else that does, or because everyone else likes it. But, contrary to my old teenager self, I no longer feel the need to like something or do something just because it is completely different from the masses. That’s just flat-out called rebellion.  :-)

However, from time to time, I will avoid something, just because it has been embraced by the masses. Take TV for example. Some shows I just won’t watch. Just because. Just because everyone and their mother watches it, doesn’t mean I have to (uh oh, that sounds kind of like rebellion to me, or perhaps I’m just feebly trying to justify the fact that I am a telly addict and just don’t have time to watch everything…).

Then there's Glee. Glee began just a little over a year ago. I knew how much hype was surrounding it, and was kind of turned off by that. But secretly, in the back of my mind, I thought it might be something I’d enjoy. But Steve would hate it. And I didn’t want to watch it just because everyone else was watching it. So I didn't.  However, a little more than halfway through the season, I bit the bullet and tuned in. I didn’t quite get it at first, thought it might be a bit silly, juvenile, weird. But I stuck with it. And, as I began to get more familiar with the characters and the overall tone of the show, I fell in love. Other than the fact that the music is wonderful, no other show makes me laugh and cry with the same frequency, has the level of beautifully-crafted social satire that covers high school life so completely, raises awareness of the issues, any issues, than Glee does. It covers teen relationships and angst, peer pressure, the need to be popular. It looks critically at each social group within the school experience, even down to the teachers (they’re not so different from the kids in how their social structure works!). They address bullying and have gay, Jewish, black, atheist, obsessive-compulsive, adopted (with gay dads), hearing-impaired, wheelchair-bound and chromosomally-enhanced characters, dear to our hearts. It’s a veritable rainbow, a melting-pot of the teen experience. It preaches tolerance, love, compassion, acceptance.

I caught up over the summer, watching the early episodes that I had missed, and am right back into it again this season. The masses love this show. So do I. I just hope that the masses are getting out of it the messages that it sends so loud and clear, and that those notes of tolerance, love, compassion and acceptance will help to form a new hope for Samantha’s social and educational future, both in school and out. Wow, I never thought I’d have so much riding on a mere TV show.

Day 10: Amsterdam International

I probably should have saved yesterday's post for a weekday, as the weekend blog traffic is generally quite light, and I was hoping for a bit more information from people to refute my hypothesis.  LOL 

But today, I'm posting a slightly different take on the usual version of Welcome to Holland, created by Emily Perl Kingsley.  If you are not familiar with it, please follow the link to read it.  It's a lovely introduction for parents just beginning this journey.  Dana at Uncommon Sense contacted me this week with her version, Amsterdam International, that she'd put up on her blog.  It gives a slightly more realistic view of the stages of coming to terms with receiving a diagnosis of Down syndrome for your child.  I personally think it's a wee bit harsh, and may need a bit a bit more of the positive stuff at the end.  Or, perhaps, it may be perfectly well suited to someone that's already come to terms with the diagnosis, but is wanting to explain how it is to other people that are not on this journey?  I like it, but am just wondering when and for whom.  It's possible that my difficulty with this is in the fact that we did not have a difficult time ourselves coming to terms with the diagnosis, and moved on into Holland quite quickly.

 Here it is, reposted with permission - I'm interested in your thoughts!

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.


(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

 (Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

 Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

 But you will leave the airport. You will.

 And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

 And it will change who you are, for the better.

Day 9: Lies, Lies, Lies, Yeah!

So I'm seriously dating myself with my post title.  Anyone else out there remember the Thompson Twins as fondly as I do?  Ahhhh, the 80s.  :-) 

Ahem.  Anyway, I've been seeing many blog posts by others who are working their way diligently through 31 for 21 about the myths and stereotypes of Down syndrome, what is fact and what is fiction.  I think these posts are a great idea, to educate those who are just beginning their journey with a child with Down syndrome, or for those without a child with Ds who just want to learn something new.  However, there is one stereotype that I have not seen listed on these posts but that I have heard in passing over the years.  And I don't know what to believe about it. 

It's about the inability to lie. 

I don't think this refers to children being silly, a very common occurrence from Samantha (What color is the sky today?  Red!  Noooo, silly, it's not red, tell me the right color!  BLUE!!! (giggles)).

I think this refers to an innate honesty and pureness of soul and conscience.  The inability to deceive for personal gain.  Will we miss (a relative term here) out on that ritual of teen rebellion where they lie to stay out of trouble (No, I haven't been drinking!  Yes, I was at Suzy's house!)? 

Perhaps it even refers to a missing element of self-preservation.  Whoa.  That just came to me as I was writing this, and it startles me.  Is this true?  If so (bearing in mind that I just made that up), does that mean a diminished ability to assess risk?  I'm pretty sure that is the case anyway, and am truly not sure if it ties in to lying, but it's still interesting to me.

Have any of you heard this before?