Day 19: About Reading... (Q&A Part II)

Q.  LOVED the video of Sammi reading. So what are the things you did with her early on to help her get to be a good Kindergarten reader? Help those of us with the little babies!



A.  About that reading…

First a couple of disclaimers – Remember – don’t compare! Children will learn their own way, in their own time. Also, just because a child may not have strong verbal skills doesn’t mean they can’t learn to read. I have seen videos of children learning to read and using signs to show that they know the word on the page.

I was a fairly early reader, being only one of a small handful of children in my Kindergarten class who could read. I have very specific memories of sitting at my little desk, a copy of Tip and Mitten open in front of me. I think Tip and Mitten was my generation’s answer to Dick and Jane. Now, I think Biscuit, many generations later, is the current incarnation. After Samantha was born, I had fantasies of her being able to read by Kindergarten. After all, her mommy did, right? No problem. Hahaha… Reminded me of the time the Early Intervention people came to visit us for the first time, when Samantha was about a month old – they’d asked me what our PT goals for her were in the first year, and I immediately said I wanted her to be able to walk by 1. Okay, so I was a bit off…and perhaps a bit delusional…

I had mentioned in my last Q&A post that Samantha had stopped learning new words by @15 months old. At 18 months we realized that we needed to “bridge the gap” of communication until she started to pick up new words again, and began to introduce signs. I remember like it was yesterday, standing in front of a shelf at Borders (sigh), trying to decide which kind of baby signs materials I should buy to teach both us and Samantha. After a lot of deliberation, I settled on the ones shown in the picture above. I don’t think I realized at the time just how important this box of cards would be for her over the next 4 years. To say they’ve been loved and used and abused is a definite understatement. You can see the state they’re in, even if you can’t see that the box has been broken and re-taped a dozen times. I finally just gave up. Anyway, these cards were important in several ways. The front shows a photo of an item or an action, with the word written in large letters above. The back shows the word written again, with a photo of a woman demonstrating how to create the sign. We, as parents, learned how to make the sign and model it for Samantha. Samantha would learn to make the sign when she saw the picture on the front of the card. The next stage involved Samantha using the pictures to learn to say the words, as we held them up one by one. Once she learned her letters, she used the cards to say each letter in the word then say the word, as if she were reading it (C-A-T…cat!) Now, at this stage, so many years later, I have been turning the cards over and putting my hand over the photo of the woman doing the sign and Samantha has been trying to read the words, with increased success.

And that's where it really started.  Last year, The Learning Program was introduced in our area, sponsored by our local Down syndrome association.  The Learning Program is based on a program developed by the Down Syndrome Foundation of Orange County (DSFOC), and focuses on the visual learner, as most children with Down syndrome are.  The parent is taught to teach the child, providing materials that keep the child engaged while learning.  Materials are available on DSFOC's Learning Program website to download for free.  The Learning Program itself is only offered in a small handful of regions across the country, and we're lucky enough to have it here. 

We missed the enrollment deadline last year, but happened to be approached by Terry Brown, one of the people involved in the Orange County program, who now runs So Happy To Learn from her house, teaching students with Down syndrome to read, write, do math, etc.  She asked us to help her pilot a sort-of correspondence version of her program, via e-mail.  As I am of the opinion that we should throw as many tools as we are able to at our kids in their education and development, so I jumped at the chance.  I can only say that what we learned from her was invaluable.  While we have enrolled in The Learning Program this year, we are also continuing to learn from Mrs. Brown as well.  As not everyone has this opportunity, I ask you all, if you have not yet already, please look into those Orange County Learning Program materials, and go out and get Teaching Reading to Children With Down Syndrome, a Woodbine House publication by Patricia Oelwein!

But first things first - for those of you with younger children, my advice is flashcardsflashcardsflashcards.  Any type, multiple types!  Kids may respond better to one style or type over another.  Sammi learned her alphabet and her numbers from the cards I posted about here, but trust me, we have plenty of cards she isn't afraid to turn her nose up at.  That's why it's so good to get several kinds - you never know what it is that will appeal to them - could be a color, a character, a size, a texture...

I hope this helped answer the question about reading! 

The rest of the Q&A will be in the next post (oh, so many great questions!).

And just in case you'd forgotten, I'm helping Erin at Crazy Beautiful Love host a Blog Hop this Friday, October 21st for Down syndrome awareness.  Please join below and check out the bottom of yesterday's post for instructions!

One Day at a Time

On Sunday, Samantha and I drove out of state to visit a very old and dear friend of mine and her young son who were several thousand miles closer to us than usual while visiting her parents for the week.  It had been a full year since the last time I saw them, and, with our children only 3 months apart in age, we always had so much to talk about on these brief occasions. 

Her parents, a sweet, generous, and loving couple, took us out to lunch when we arrived.  I tried to keep the antsy, withdrawn Samantha entertained while we waited for the food to arrive.  With unfamiliar company, she shut down a little, needing a bit more warm-up time.  I knew she'd be okay eventually, but in the meantime, she played games on the Toshiba tablet until the battery wore out.  My friend, a teacher and ever-prepared for just such an instance, pulled out a small, compact set of 1st reader books, and Samantha, always keen to get her hands on new reading material, perked up. 

My friend's father, across the table, asked, "So, with school...what are you going to do about school for her?" 

I smiled, waiting to see what he said next, pretty sure I knew what was coming.

"Will you homeschool her?"

Ah, there it was.  Absolutely nothing negative about what he was saying - he just didn't know, and I was so happy he asked. 

And I was so happy to respond. 

"Actually, she's *in* school.  She's going into 1st grade!"

He wasn't sure he'd heard me correctly.  "What?"

My friend jumped in.  "Dad, she just finished Kindergarten - she's going into 1st Grade next month!"

He looked surprised, but happy to hear this, learning something unexpected and new.

But the surprises kept coming. 

Samantha took the reading book from my friend, and began to read it, breezing through.  My friend's son, not as strong a reader, said, "Try book 10 - it's really hard.  I can't read it."

Her parents were paying close attention by now.

I turned to book 10 in the series.  Samantha read it effortlessly.

"Does she memorize it?" my friend's dad said.

"No, Dad - she reads at a 2nd grade level."

He was really intrigued now, and I explained that while she's a natural reader, surpassing both my myself and my mother at her age (both in accelerated reading groups all through school), we're now working on reading comprehension.

Uh, and speech intelligibility, of course.  My friend's son, trying so hard, couldn't understand much of what Samantha said to him, partly due to her tendency to go off on rambling random tangents, and partly due to her speaking way too fast.  My friend and I both had no trouble understanding her.  We came to the conclusion that children are not accustomed to reading between the lines, to gathering context to fill in the blank spaces and to formulate full meaning from snippets.

Frustrated, he threw up his hands, and made his own conclusion, "I think she's speaking Spanish." 

We stifled our giggles, and I silently congratulated him for his valiant efforts.

And later, after we said our goodbyes and Sammi and I headed back home, I had some time to think, reflecting on a time not so long ago, when interactions like this would have bothered me, would have left me in tears, feeling that vast gulf between Samantha and her typically-developing peers so sharply.  But time and perspective have shifted things, allowed me to look on them as learning experiences for myself, for Samantha, and for the other child. 

Perspective is such an amazing thing.  It is an indication of growth, of maturity, of acceptance.  It is an indication of having come full-circle, of creating a starting point for the next phase of our lives, of seeing things in a new way and throwing out old, stale misconceptions and negativity, allowing myself to embrace the future.  I hope that each stage in development, both Samantha's and mine, can be met with such clarity, with that new perspective that opens up the next door in front of us. 

One day at a time...

Just a Number, or Does it *Really* Matter?

In a few short weeks Samantha will be turning 6. 

6!!!!! 

I can't believe it.  A year ago at this time, I was thinking that the preceding year hadn't really netted any major milestones met, no major happenings to report, nothing I could really put my finger on and pinpoint, no "these-are-the-amazing-things-that-happened-this-year" things.  It was a pretty ordinary year, during which we did pretty ordinary stuff.  She was completing her final year of preschool, and while we were thrilled at how well she transitioned to 2 days a week of full-day private preschool in addition to 3 days a week of half-day public Special Education preschool, and how well she made "typical" friends, it was all still pretty regular stuff.

This year, that is definitely not the case.

I've been bowled over by what 5 has brought (the first 3 are more our own personal "letting-go" milestones):

• The elimination of pull-ups at night (they were already eliminated for daytime) started two weeks before her 5th birthday. 
• The removal of her bedrail, and the child-proof door handle in her room (we finally let go and realized that she's not a wanderer, plus she'd certainly need to be able to get to the bathroom if necessary!).
• The end of the audio baby-monitor.  Several months ago it just stopped working.  Which was fine with us. 
• Reading!!!!  And not just reading books at her age-level, but reading, voraciously, just about anything she can get her hands on, including 2nd grade-level books.  I've posted about this before, but my dream was that she'd be reading by the time she got to Kindergarten.  She was, a little bit, but for some reason, by the 3rd week of school, something just clicked and she began to read, naturally, unhindered.
• Writing!!!!  She has beautiful (to me, at least) handwriting, and is now responsible for writing out her own birthday/thank you/Valentines/whatever cards (with verbal prompts to help with spelling).
• Picking up a few chores here and there.  Ask her to feed the cats?  Set the table?  Clean up her room?  You got it!
• And so many more.

But it's bittersweet, really.  I was sad when she turned 5 because it was such a huge moment of growing up.  For me, and for her.  My baby was no longer a baby.  Now, I feel trepidation towards 6 because of what the number itself means.  Well, what it means to me, anyway.  While Samantha is still 5, I can say, when someone asks, "Oh, she's 5." 

Like it's an excuse.

Oh, how awkward I feel for saying that, but it lives in a little box in the back of my mind.  Yes, my child comes across as younger than she is.  So five is a convenient explanation.  And, on the flip side of the coin, my child, academically, is pretty amazing, surpassing many of her typical peers in a lot of things (I only say that to make the point in the next sentence).  So five is used to boost that.  The expectation at five is that she shouldn't be able to do those things, and saying, "Oh, she's five!" sounds super-impressive.  The expectation at six is that she should, and the number is no longer a source of marvel. 

Yes, it's just a number. 

Yes, I'm being a tad bit ridiculous. 
Yes, I'm incredibly proud of everything she does, regardless of age!

And no, I cannot believe she's almost 6 already...my big girl.  How time flies.  How amazed I am at her, each and every day, and all that she's taught me about oh, so many things.  How much I treasure every minute I get to spend with her, looking at her, marveling at this beautiful creation we brought into the world nearly 6 years ago.

Day 17: About Reading: Terry Brown Podcast - So Happy To Learn

I was so excited yesterday to see on someone else's blog that Terry Brown, guru and creator of So Happy To Learn, participated in a podcast on Yvonne Pierre's weblog the other day.  If you missed my previous posts on the subject of reading, Terry Brown was totally instrumental in Samantha learning to read.  She's an amazing woman, an amazing teacher, and an amazing advocate for people with Down syndrome, and I feel very fortunate to have learned so much from her. 

The podcast runs for about an hour, and is totally, totally worth listening to all the way through.  Terry not only discusses teaching reading to people with Down syndrome, but also writing and math.  The link can be found here:  http://www.blogtalkradio.com/ypierre/2012/10/13/reading-and-down-syndrome-with-terry-brown (where you'll find a few photos dropped into the audiocast) or just click on the link below.

Listen to internet radio with Yvonne Pierre on Blog Talk Radio

Happy to Share!

Many warm thanks to Ashley at Chaos Diaries for nominating me for the Kreativ Blogger award. This is quite an honor, especially coming from someone as eloquent as she is. I have, until very recently, been in a bit of a blogging slump. I keep hearing this from so many other bloggers, and in my case, at least, I have Facebook to blame. I figure that if I already posted about it on FB, what’s the point of blogging about it? I think I assume that most of my blog readers are also friends on FB, but I can’t be certain. So I’m often challenged to come up with new and more interesting, or creative things to write about, still staying mainly on the path of topics about my daughter, although I certainly don’t mind straying a bit just to be a rebel. A few posts ago, I mentioned how happy I was to be finally inspired by an outside source, Crazy Hip Bloggers. The post before that, I was lamenting the lack of time in my life. Lack of inspiration + no time = SLUMP. Surprise! I now feel that I have been doubly-challenged to get things in gear.

One of the rules in accepting the Kreativ Blogger award is to list 7 things that people might not know about me. I was thinking about that this morning on my way to work, and had to keep reminding myself this is 7 things people might not know, NOT 7 secrets people don’t need to know! Hahaha. I don’t think I could possibly think of 7 secrets anyway. 2 or 3, maybe…Then I had to keep reminding myself that my readers are not my family (well, not all of them are), and what I assume people already know about me, they probably don’t, so this may not be quite as difficult to come up with as I’d originally thought.

1) I kept a diary from the time I was 7 pretty much until I got married, at 23. I remember the very first diary I bought, a little blue book with flowers on the cover, and gold-edged pages. Sadly, that one book, of all the books I kept over the years, has gone missing. It chronicled my crushes on Shawn Cassidy and Donny Osmond, and how mad I was at my parents for not being allowed to do whatever it was I was not allowed to do on any particular day. That volume was followed up by a Hello Kitty diary with a little gold key. I always tell myself I want to re-read all of them, then scan or type them into electronic form, but there’s never a day rainy enough to start it. The teen angst years are a particularly riveting read, and I feel that knot in my stomach all over again whenever I look at them.

2) I was an only child until I was 21 (and already moved out of the house), when my baby brother, Josh, was born & adopted. I think this accounts for my love of reading, writing and art. What else is a little kid going to do when there’s no one else to play with? I sure hope it all rubs off on Samantha…

3) I played classical piano from the time I was 6. I stopped when I went away to college and while I wasn’t bad, I now can’t bring myself to play much because I think it all sounds terrible. That’s what I get for letting 23 years go by without any additional practice or training.

4) I have a serious and incurable addiction to ice cream. Pretty much any kind. (Woooo, that was scandalous! Oh, wait, things people might not know, not secrets…)

5) I have lived in Okinawa, Germany and London. Amazing experiences, all of them.

6) I swore off organized religion when I was 13 and living in Okinawa. I had been raised Jewish, but the only English-speaking school that was close to where we lived (we were not on a base) was run by fundamentalist Christian missionaries. I was truly scarred for life. I still have an incredible appreciation for religion for people that want or need it and for religious art (my favorite), but just choose to do my own thing. And I have nothing against the missionaries that taught me there, I just was at an age where things were particularly confusing and hard to sort through.

7) Steve and I eloped in England after knowing each other for just over a year, 7 months of which were long-distance.

Well, I hope that satisfied your curiosity. I know you were just dying to know those things.

Okay, so here are the official rules to accepting the Kreativ Blogger award:
1) Thank the person giving the award - Check...
2) Copy the award to your blog - Check...
3) Place a link to their blog - Check...
4) Name 7 things people don’t know about you - Check...
5) Nominate 7 bloggers - Keep reading...
6) Place a link to those bloggers - Keep reading...
7) Leave a comment letting those bloggers know about the award - Oh, that'll have to wait until tomorrow. My bed is calling me...

Here are the 7 nominated bloggers, whose blogs I enjoy reading regularly and who make me think. :-)

Amber at Tales of the Baker Bunch
Dawn at An Unexpected Trip to Holland
Sun at How to be a Zombie in Two Easy Steps
CJ at Don't Lick the Ferrets
Monica at Monkey Musings
Linda at Lila's Miracle Life
Michelle at Big Blueberry Eyes

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?

What Keeps Me Up At 5am

I woke up at 5am this morning.  The ancient desktop in the room down the hall was painfully churning away, as it always does when I forget to turn it off at night, but usually I can sleep through that.  Not today.  Today I was up.  My brain suddenly wide awake, worrying, worrying, worrying about school. 

About what?  Sammi's excited to start, she has a new Rapunzel backpack with a new princess lunch bag for the days she takes her lunch, we won't have to worry about "fall" clothes yet for another 2 months or so in our climate, so her current wardrobe can still stay, the teacher is awesome (and she said she reads my blog every day!  Hi, Mrs. R.!), she'll have the same amazing aide as last year, and she'll be attending full-time, finally, as we've been looking forward to for the last 6 years.  LOL

So what, exactly, am I worried about?

Bathroom breaks, that's what.

Lastnight I attended Back to School Night at Sammi's school, a night when parents can go and see their child's classroom, speak to the teacher and fill out paperwork.  I got the amazing privilege of sitting at Sammi's desk and leaving her a secret love note inside.  I heard about lunch menus, lunch money, daily schedules.  I felt a pang of fear at the mention of spelling and math tests, Phys Ed 3 days a week, and self-guided group reading activities.  I laughed to myself when the teacher said her goal was to have kids reading, eventually, 20 minutes per sitting, starting off in 3-minute sessions.  Right.  (Sammi could tear through book after book, reading each and every word, for 2 hours, if you let her...the teacher will find getting her to stop and refocus on a new activity to be the real challenge...)  I was a little sad to see that one of the little girls that was so close to Sammi in Kindergarten, who we were told would likely be placed in her 1st grade class with her as peer support, has actually been placed into another class (even her mother was surprised!).  Parents asked great questions about some of the more minute daily details, the answers to which I paid very close attention. 

But I totally forgot to ask about bathroom breaks.  And I totally don't recall seeing a bathroom in the classroom. 

Not like I mind Sammi using the group restroom down the hall.  That's absolutely fine.  Ordinarily none of this would worry me, but we heard from her aide last year that she never used the bathroom at all during Kindergarten. 

My child, with the bladder of steel, who I made sure used the toilet twice before leaving the house every morning, just never needed to go while in the half-day Kindergarten program, and just waited until she got home. 

First grade is going to be very different.  There is absolutely no way she could hold her water from 7:30am to 2:30pm, and if there's no bathroom in the classroom that she can just get up and use when she needs to go, will she ask to use the other one when she does?  If the class goes en masse to take a lavatory break, will she go then, or say she doesn't have to (the mantra of the stubborn - okay, willful - child) and then be stuck later? 

I'm not worried about accidents.  Steel, remember?  But I am worried about my silly girl getting sick if she holds it every day.  I'm probably worrying about absolutely nothing.  I'm sure she'll get into a routine soon enough, and, with the help and encouragement of her aide, she'll be fine. 

But that's what kept me up this morning.

Oh, that, and carrying her lunch tray without dropping it.

And math and spelling tests.

And the self-guided group activities.

And recess.

And PE.

And...and...and...

*sigh*

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.  :-) 

  

Day 6: Biscuit Goes to School

So, she did it again!  After a week of reading her first Biscuit book that she got out of the school library, it was time to return it.  I was a little bit sad because she had completely taken us by surprise by reading it out loud, cover to cover, after she'd had it read to her just once, but also quite excited as I wrote a quick note to her teachers to ask them to ensure that she got another Biscuit book from the library this week.  And they were only too happy to comply. 

Here she is, reading Biscuit Goes to School, her 2nd Biscuit book, after having it read to her only once or twice in the last 2 days.  (She was also very tired and only 1/2 hour from bedtime, by the way.)  Certainly, there's some element of memorization here, and context also plays a big role - she knows to expect certain words here.  There's also recognition - she remembers that some of these words also appeared in the previous book, and she does recognize them here.  But, and this is the part the makes me really excited, she also has begun to sound words out.  You can see it some on this video, where she takes the sound of the first letter and tries to make it work with the others, within the context of the book.

Oh, and this is the last one I'll post, I promise...I'm just getting all of my mental jumping-up-and-down out, now that she's read 2 books on her own!  The next book will be old hat, right?

Enjoy (especially her sweet little greeting to the camera halfway through!), and please ignore the awful, blood-curdling, bone-chilling tooth grinding that she does when she's tired.  Ugh.

Day 17: My First Q&A! (Part I)

I'm so excited to be posting my first Q&A!  Thank you to everyone who left questions for me on Friday's post.  I had to do some serious thinking about some of them, too.  I'm going to have to break this into two posts, seeing as I'm rather long-winded in my answers... 

It was a little bit of a problem that I'd disabled the right-click function in Blogger, though, as I couldn't then copy the questions directly into this post, but eh, I'll get over it.  Gotta love alt-tab. 

Q. How did you grow out Sammi's hair so gorgeously?  Were you ever tempted to cut it?  Did she resist the clips and holders and stuff?

A.  Sammi's hair is really a story of how my resistance to a preconceived notion of mine about Ds just got out of control.  I had wondered, when she was born, if kids with Ds had to have that institutional bowl cut that it seemed I saw in my memory bank of old photos.  I thought if I could have her hair long and natural, I could smash that particular stereotype and ensure she'd have a more "normal" childhood or something.  So I just never cut it.  Ever.  Not even a trim.  Actually, when she was born, some of the OB's first words were, "Wow, I've never seen a white baby with that much hair!"  I was never really tempted to cut it, although I do receive some pressure from time to time from other family members (thanks for the haircut scissors you brought over two weeks ago, Mom...I get the hint...LOL).  Correction...I am now tempted to cut it a little bit to bring it back to her waistline.  I asked her last week if she wanted me to cut her hair, and she said no and got upset.  Oops!  What have I done?  Oh, about the clips and stuff...at about 3 months I had to use a single clip to keep her hair back off her forehead.  Once she discovered that she could pull the clips out, which was a brief phase, I just had to be persistent and keep putting them back in.  Eventually she was resigned to the idea that she had to live with them.  I can only use very specific hairbands and clips in her hair because so many others get tangled or caught, and trust me, I have tried them all.  It's just been a lot of trial and error.  Sammi doesn't love having her hair done, but she's pretty good with it unless I'm trying to pull a hairband out of her hair from too close to her head.  Ugh, I'd hate that, too!  I usually do her hair while she's eating breakfast and watching TV in the living room in the mornings.  I do miss being able to have her hair in pigtails or a pony tail instead of braids (having her hair down poses certain, uh, logistical issues when it comes to sitting on the toilet, and it also gets pretty tangled), but I also just love the braids, too!  I think the day is coming, though, when I need to bite the bullet and take it all up a bit...

Q.  When did Sammi start talking and did you start sight words (etc.) before she started talking?  I think I've waited too long, %^&* linear thinking.  I think we're just going to navigate around the speech & dive in visually.  Your experience?

A.  This is a great question, and I'll answer this before I get into the reading questions (next post).   Sammi actually started talking (relatively) early, with her first spoken word @11 months (more).  By 15 months she had about 15 spoken words and no signs (we'd never introduced them at that point), but then, while she kept those words, she stopped learning new ones.  At 18 months we realized we needed to do something to bridge the gap until she started learning new words again, so we introduced a few signs, which really helped.  At 21 months, when she started walking, her language began to take off again and we eventually dropped the signs soon afterwards.  (Btw, this phenomenon is fairly typical of our kids with Ds...they lose traction in one developmental area while concentrating on mastering another, then explode with new skills once that other goal is met, like walking.)  We didn't actually introduce sight words, other than the ones that accompanied the pictures on some baby-sign-language flashcards we had, until this past year (also to be discussed in my next post about reading).  Please keep in mind that children don't need to be able to speak to be able to read.  I saw some videos last year of children with Ds who were learning to read and using signs to communicate what they were reading.  So sight words can be introduced at any time, with or without verbal skills.  And it's never too late, either.  Learning is an ongoing process.  When asked by parents when they will know what their young child with Ds will be capable of, Samantha's geneticist tells them, "at the end of their life."  You can never know what they'll be capable of - there is no time/age when learning new things just stops.  They will always learn new things, provided the opportunities and tools.

Q. Have you thought on having another daughter/son???  :)

A.  Omg, this was probably the hardest question of all!!!!  Wow.  We had only ever wanted one child to begin with.  And when Sammi was born and for the first 3 years of her life, I felt like there was no way I could ever love another child as much as I love her, and I couldn't ever ask her to have to share love with another child.  As she grew older and more mature, I knew that actually, she could handle that, and would probably love to have another child in the house, but financially, we're not in a position to have another child (through adoption), from the standpoints of having one of us stay home from work again, daycare costs, future costs, etc.  Also, perhaps a bit selfishly, we're not prepared to have another child.  Sammi's at a really easy age right now, and is just so much fun to do things with.  We're enjoying so much the ages and stages she keeps growing into, and love not having to be distracted from any of it!  Hope that made sense...

Q.  hmmm.  do you mind if I steal this idea?

A.  Oh, of course!!  I stole it from someone else, so hey, go for it!  Maybe someone should write some sort of Blogger Code one day, something that outlines all the (previously) unwritten rules of blogging, including the one about it being perfectly fine to steal post ideas.  Eh, nothing's sacred...

Okay, I've written quite enough for now.  The rest of the questions will be answered in my next post (or the one after that), as I feel that they'll require a lot more room and time to answer.

2BContinued...

I Love Surprises!

Sammi's teachers have asked me to be kind to them on my blog, to say nice things.  And to be perfectly honest, I don't think it would be humanly possible to say anything but nice things about them! 

And isn't that a wonderful place to be?

They are all truly amaaaaazing.

Our first Parent-Teacher conference was at 7am on Tuesday with Steve, Samantha and me, along with her main Kindergarten teacher and her Resource teacher.  Samantha was a real trooper, waking up early as if in anticipation of the before-sunlight trek (okay, 40 seconds in the car...) to school, making it super-easy to get her fed and dressed, hair perfectly braided and ready in plenty of time.  Once inside the classroom, she made a beeline for the library area, reading books and putting each one back as she finished with it.

We were all able to talk uninterrupted.

Now this was a meeting at which we were not expecting to encounter any surprises.  We speak to the teachers twice a day between the two of us, and have a pretty good idea how things are going for Samantha. 

But oh, how we were surprised!

First things first, our state has something called PALS testing for Kindergarteners.  Just when we thought we'd heard all of the acronyms we could ever, in our lifetime, expect to hear, we discover that there would be yet another lifetime's-worth of school-based tests, each with a name designed solely to boggle our minds (and while that did surprise us, that's not what I'm referring to when I say we were surprised...). 

PALS is short for Phonological Awareness Literacy Screening (try saying that 10 times fast...).  It consists of 1:1 testing between student and teacher, once in the fall and once in the spring, for all students, to determine whether or not the child may need additional reading instruction outside of what is ordinarily provided to typically-developing readers.  I love that they screen early on to catch potential problems at the point the child is only just learning to read.

The Resource teacher, the person who had administered the test to Samantha and the other children, reviewed the exam and Sammi's results with us.  What surprised us was the page of the test that had five 3-letter, hand-written words, words that had been written by Samantha's hand alone.

Now...

That, in and of itself, is a wonderful thing, but I'm not too surprised she can do that - she's been writing her letters with more and more accuracy over the last 2 months to the point that you can tell her what letters to write, and she'll write them on-the-spot.  She writes her first name independently on each and every paper that comes home from school.  Actually, she writes her first name independently on each and every piece of paper, period, including whatever she can find at home.

But nobody told her what letters to write this time. 

This portion of the test consisted of the teacher saying a word, slowly, clearly, carefully enunciating the letter sounds, and the child writing the word.  By themselves.  By herself.  The margin of error allowed for the child to choose an "e" over an "i" or vice versa, or a "c" over an "s," etc., for those words that had similar-sounding letters in them.

Holy cow, she nailed it!!!  Did I know my daughter could spell anything other than her first name without seeing the word written in front of her?  Hell no! 

2 months.

2 months she's been in Kindergarten, and she killed each section of that test, getting scores like 8 out of 10, 9 out of 10, 24 out of 26, surpassing the benchmark scores that were set to determine pass/fail by miles.  And for the one section she scored just a 5 out of 10, the benchmark was actually set at 0.

Oh, and that night, while she was in the bath, she surprised me, yet again, by reciting the Pledge of Allegiance (sure, the words weren't quite right, but hey, I never knew them the right way, either!), complete with one invisible nation.  Hehehe 

Sometimes I feel weird posting so many brags on my blog.  But I honestly can't help it.  This kid has amazed me from Day 1, and when I see how incredibly hard she works to reach the goals that are set, it overwhelms me, warms my heart, fills me with so much pride I just might burst.  How else can I get it out?

Samantha's class had a Harvest party on Monday (yeah, yeah, I know, it was really a Halloween party, but in the interest of remaining holiday-neutral, that's what it was called), to which parents were invited.  Steve and I were unable to attend, but one of the other children's mothers, stopping in at the office on her way out of the school (not sure if she went into the office specifically for this reason, or if it somehow came up in conversation while she was in there for something else), reported to the staff there that Samantha was the most polite child she'd ever met. 

Be still my heart...

Report cards come out in the next week or two.  Report cards!!!!!  How did I forget that HUGE milestone in the life of an elementary school child?  Okay, so it's more of a milestone for the parents... 

Fully-potty-training, turning 5, losing teeth, starting Kindergarten, reading, writing, walking to class on her own, taking tests, Parent-Teacher conferences, report cards...how much more of this big-girl stuff can I take from her??   

I am reasonably sure we will not be surprised by what we read on her report card.

Or will we?

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 Grampa Kind of Weekend

Thanksgiving has come and gone, and with its passing, has ushered in the whirlwind that is the holiday season.  Seriously, it's like all of a sudden everything is about to explode with color and sound, movement and scent.  And it isn't going to stop until January.  And I love it.

We enjoyed Thanksgiving dinner with my mother and my step-father, along with two friends of the family on Thursday at their new condo here in NoVA.  I made whole-berry cranberry sauce, and Steve made sausage rolls and honey-ginger carrots to accompany the amazing feast my mother prepared.  I seriously don't know how she does it, and am not sure I want to know, to be honest.  But I am always very, very impressed.  We have decided to host a traditional English Christmas dinner this year at our house, which should be both fun and interesting.  Steve will do the majority of the cooking, which, I'm sure, will be amazing, and I'm sure that will warrant a series of blog posts in the future...

On Saturday Samantha and I drove down to my parent's lake house for the weekend, as we hadn't been there in a while, and Sammi was excited to spend more time with her grandparents.  As beautiful as the lake is in the summer, it's almost more beautiful in the winter when the leaves are gone and the view from the nearly floor-to-ceiling windows is unobstructed and  just spectacular. 

Below are some pics of Sammi and her Grampa.  :-)



Reading on Thanksgiving night



Reading at the lake

                                      

"Helping" Grampa plant



Once Upon a Time...

I thought that motherhood would automatically grant me the superpowers to fabricate dazzling tales of magic and intrigue, with my words weave the rainbow-hued landscapes of childhood,  permit me to sing an entire catalog of earthy folk tunes from memory, in the voice of an angel - you kow, all those things that make such beautiful memories for children to carry with them from babyhood, on to their own next generation of offspring.  Sadly, I have none of that, and certainly no songs past my croaking of the usual standards, ABC or Twinkle Twinkle, and absolutely no imagination when it comes to telling stories.

None, I'm embarrassed to say.  And I'm really putting myself out on the line here by sharing with you the one, single, uber-pathetic story I have managed to create on my own, to present to Samantha, time and time again, because I have absolutely no idea what else to say.  Thankfully, she hasn't objected...yet.  And thankfully she's usually much happier to have me read a book to her every night at bedtime, effectively letting me off the hook.

For Sammi's and my next Learning Program session next weekend, my homework from our last meeting was to create a reading book personalized for Samantha, something she could read and enjoy over and over again, that would likely mean more and connect better to her than other books.  Not like she hasn't connected to a gazillion other books already, but it is nice to have something special, made for her.  I haven't laminated or bound the pages yet, but will take care of that this week at FedEx/Kinko's. 

I actually had a bit of fun making it, as I enlisted Samantha's help ahead of time.  I told her I was making a book for her to read, and I needed to take some photos of her reading a book, playing a game and having a tea party.  She said, "Sure!" and was incredibly cooperative, so I got the shots for pages 2, 3 and 4 with her assistance.  These kinds of books really are beneficial when teaching your child to read - these are words and concepts that they relate to.  Some of the words in this story are still unfamiliar to Samantha, but for the most part, she has taken a good stab at it and I've helped her out with beautiful, things, once, parties, and happily.  But you can bet, with a few more reads, she'll have them down pat, and you can bet that if they turn up in another one of her books, they will no longer be unfamiliar to her.   

And now, for la piece de resistance, as my ears turn pink and I cower under the covers in horror at my definitive lack of creativity...

Day 5: It's Buddy Walk Time!

Tis the season for Buddy Walks, cropping up in local Down syndrome associations around the country. The annual Buddy Walk, a title coined by the National Down Syndrome Society (NDSS), is generally the largest fundraiser of the year for these organizations, helping them to provide important programs and support for local people with Down syndrome and their families.

We have been so fortunate to have had the Down Syndrome Association of Northern Virginia these last 5 years. It’s an amazing group of parents, children and self-advocates, all working hard to make our community better for people with Ds. The DSANV is run by volunteers, relying on outside donations to make it all happen.

See that little thermometer to the right of this post? That’s where our team’s Buddy Walk fundraising is right now – we’re less than 2 weeks away (October 15th) and have hit our goal and will hopefully have a sweet little milestone marker with our team’s name on it - Sweet Pea United - waiting for us at the Walk.  Since so many of you reading this today are already involved in your own Buddy Walk fundraising, I’ll appeal to those of you reading this who are not part of the Down syndrome community – please donate to help DSANV to hit its larger goal and beyond! I promise you, it will not go to waste. We have benefited in so many ways from the support of this organization, and I have seen how so many others have as well. Every time a tiny new baby is born with an extra chromosome in our area, DSANV is ready to welcome that baby to the world, to congratulate the parents and welcome them to the fold, to provide information and contacts that let them know it’ll be all right…

(The DSANV Parent-to-Parent program is something that’s near and dear to me. I will write more about that in a future post.)

In the meantime, back to the Buddy Walk, I hope those of you who are local and not already participating will join our team! It will be a very fun day – there are activities for all ages (okay, well, mostly for kids…), including music, Rachel Coleman from Signing Time (we are in the serious minority here, as Sammi will probably be about the only kid there who doesn’t know who she is), a petting zoo, face-painting, bouncy castles, a retail tent, an Imagine the PossAbilities tent – a great display! – food vendors, costumed characters, and lots of other things. There should be approximately 2,000 people there, as well!

**(Oh, just a quick note about our ignorance of Signing Time – when Samantha was a baby, we kept hearing about how wonderful Signing Time was. Finally, my mother came over one day and brought one of the DVDs that she’d bought. We watched it, but were completely underwhelmed. There was no music, no singing, just some slow-moving lessons on some basic signs for some basic words. Samantha was bored, I was bored, and I just couldn’t see what everyone saw in it so we dismissed the concept. Shortly afterwards, Sammi’s verbal language started taking off, and we had never actually introduced more than a few signs to her. It turns out that we had actually gotten just about the only episode of Signing Time that didn’t have the songs! And I know Samantha would have loved it. Oh well… Btw, Mom, I’m not blaming you…LOL)

Hope to see you on the 15th!

Pronoun Problems

We've been waging a battle with Samantha for the last 4 or so years.  The Battle of the Pronouns.  Or, more precisely, the battle for correct pronoun usage.  To most of us, pronouns come naturally.  I am me, you are you, she is her, and he is him (I am he as you are he as you are me and we are all together...I am the eggman, I am the eggman, I am the walrus...). But, when you really break the concept of teaching the concept down into its most basic, fundamental parts, the literal parts, it's confusing as all-get-out.  Really confusing. 

Me:  Me (*pointing to me*).  You (*pointing to Samantha*).

Samantha:  Me (*pointing to me*).  You (*pointing to herself*).

Right?  Take it literally and you get some pretty backwards results. 

Her, him, she, he, yours, mine, *the* (as in "we're going in *the* car, as opposed to *my* car)...

Sammi has gotten so much better with this, but something that I thought would work itself out with time continues to resurface time and time again. 

After reading her a story at night and tucking her in and turning off her light, she always asks me to lie down with her.  

Samantha:  Lie down with you?

Me (correcting):  Lie down with *me.*

Samantha (making the correction):  Lie down with me?

Me:  Sure, baby.

When reading or watching TV, she'll come over to me, saying, "I sit on my lap?"  instead of "your" lap...

You get the picture. 

But how to teach the correct picture?  Repetition, repetition, repetition.  Again, it's gotten much, much better, but we have to frequently correct her.  She mirrors the correct phrase every time, so I know she's hearing it.  She'll get there, I'm certain.  But I do find the mechanics of speech and comprehension pretty fascinating, seeing all the little moving parts that make up the English language as it comes out of our mouths. 

I remember when she was just under 2 years old, worrying about how she'd be able to make associations, like a drawing of a cat vs. a photo of a cat.  A cartoon cat vs. a real-looking cat.  Making the mental jump that regardless of form, they're all still cats.  I'd read somewhere that this can be more difficult for our kids sometimes when they're babies.  But she got it every time.  She pointed to a cartoon cat and said "do do" (her word for cat at the time).  She'd point to a photo of a cat and say "do do."  So that fear of teaching the more conceptual lessons was, well, lessened. I feel like this pronoun issue is kind of the same sort of thing - it's making the mental jump that something can be the same as another in a different form (as in me vs. you, depending on who's saying it).  I suspect that teaching the concept of the earth and our place on a globe will be much the same, as well.  How do you make that mental jump from round, hard plastic ball with some colored shapes and bumpy bits on it to where we live, where we're standing right now, where we've visited.  Likewise, how do we make that jump to teaching our place in the universe by standing outside at night, viewing the infinite expanse of the stars in the sky?  I've put these last two lessons off for another time. 

Or another teacher.  So, so glad for school and the people so much better-equipped than I to teach.

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:::

  

What Wonders Await?

I know I'm a few days late, but Welcome, 2012!  Oh, what wonders wait in store for us this year?  How could you, with your sleek-sounding name that just trips off the tongue, you with your perfect "2" bookmarks on each end, possibly top those amazing moments and milestones of your predecessor, 2011? 

Tell ya what...you'd better try your darndest.  I have very high expectations here based on 2011's stellar performance.  And don't pull any of that end-of-the-world crap.  I'm not buyin' it.  Let's just re-set that Mayan calendar, shall we?

And not to sweep 2011 completely under the rug, I'd like to pay tribute to a year that surpassed all we could have hoped for, by leaps and bounds, a year of the joys of childhood, the maturity into a young lady (Samantha, not me...), the end of years of searching for lost family, the making of new friends, and so, so, so much more.

In the words of the perfectly-coiffed, impeccibly-dressed, gleaming-toothed, incredibly boooooring Steve Jones (host of the X-Factor, if you didn't know...), "And now, the results, in NO particular order..."

1.  Steve's long search comes to an end (or has it?), when he finds a first cousin and two siblings for whom he'd been looking for many, many years.

2.  Samantha graduates preschool and begins Kindergarten, in circumstances we could only describe as perfect.  Perfect placement, perfect teachers.  After so much fear and trepidation, I just can't say enough about the last 4 months!!

3.  Samantha starts reading!!  We'd been working on it bit by bit for a year, starting in 2010, but 3 weeks into Kindergarten, she proved she's her mother's daughter by bringing home a library book, sitting down with it, and reading it cover to cover.

4.  Samantha loses two teeth!  Right on time.  Mommy and Daddy weren't really ready for that, but Child took it all right in stride!

5.  Samantha turns 5.  Oh, that was a tough one...my little baby's growing up!!! 

6.  Samantha decides that she's going to take being a big girl very seriously, and, two weeks before her birthday, decides that pull-ups at night are a thing of the past.  Hooray! 

7.  We all take a real vacation including a long road trip south and the beach.  Samantha was an angel the whole time.  Gotta do that again soon...

8.  Steve and I celebrate our 20th anniversary.  Wow!

9.  We see the removal of Sammi's bedrail and the child-proof doorknob on her bedroom door, allowing her a whole new freedom, which she respects beautifully.  Did we really expect different?

10.  Samantha's fine motor skills really take off - she writes her name on just about everything (future tagger, perhaps?  I once dated a guy in Germany when I was 15 whose name was scrawled on nearly every flat surface of the city we in which we lived - he carried his markers around with him...), and shocked me two weeks ago by buttoning up her cardigan all. by. herself. 

See, I warned you they were in no particular order!  But they all made 2011 a really exciting, special and important year for us.  I feel like I've learned as much as Samantha in some respects, and recognize that minds stay young and healthy by being open to continually learning new things.  Maybe next year I'll be 23 again, right??

Hope you all have a very happy and healthy New Year!

Samantha with the new toy kangaroo sent to her by a new friend/lost family member in Australia

Irrational Fears and... Part 2: A Visit to the Doctor

(Just a quick note before I get into the post - Readers come back!!!!  I know my hiatus over the summer was long and painful, but I want to write again!!  Okay, begging over...)

Dr. Sammi strikes again

Things just get weirder and weirder with Samantha.  For a kid that must play doctor for at least a quarter of her waking hours, who owns not two but three doctor's kits, whose insatiable appetite for books includes anything that's got a character that goes to a doctor, who will tell you she wants to be a nurse when she grows up, whew, she's got a real fear of going to a real doctor that has cropped up in the last year.

Again, not really based on too much, although I think past strep tests and flu shots may have brought this on full-force.  The last time she had a strep test, the nurse had to pry her mouth open to get that horrible stick down her throat.  It was heartbreaking, and I've felt guilty ever since.  While I'm pretty sure that she did have strep that time, we suspect she's a carrier, and will always test positive.  And, as luck would have it, the only way to test that theory and get proof is to give her a strep test when she's obviously not sick.  Ludicrous, right?  Won't happen - I just can't put her through that. 

So last Thursday it was the day for her annual physical.  Just a physical.  I assured her they'd just listen to her heart, look at her ears, eyes, nose and mouth, and that'd be pretty much it.  She didn't have any vaccines due, no need for a strep test, we should be golden, right?  Nah.  Tears, tears, tears at the initial mention that morning of going to the doctor.  But they subsided, and, at the appointed time, she marched up to the office without a care in the world, even greeting the nurse who called us back, happily stepping up on the scale for weight and measurement (just FYI, she's 61pointsomething lbs., and stands 46.something inches tall).  All good signs in my book. 

But that's where the good signs ended and the fun began.

The nurse practitioner, a very nice, warm woman we'd seen before, entered the room, and the kid pretty much shook in fear through the paper gown she'd let me put on her.  I explained the situation to the woman, who took things slowly, explaining exactly what she was going to do.  Samantha, through her tears, said, "no stick!" in reference to the strep test, and we assured her no stick, no shots.  She eventually cooperated (sitting in my lap the whole time and getting to hold the lollipop the nurse had given her to hang on to until the exam was over), and the nurse was nearly finished except for the part where she has to press on Sammi's stomach.  Even after telling Sammi she was just going to tickle her tummy a bit, Samantha all-out bawled until the woman's hands were on her and she realized that it really did tickle.  I just love that laughter-through-tears thing, especially when it's proving I'm right.  :-) Suddenly, Sammi SHRIEKED and screamed, "Not my bum!"  The nurse had reached down to press her femoral artery in her leg to check her pulse, and my kid, proving that there's no grass growing between her ears and that she's been paying attention all along, reacted just as I would want her to react.  Just before the nurse had entered the room a few short minutes earlier, Sammi and I had been reading a leaflet for kids about how to stay healthy and safe, including not letting anyone touch their private parts. 

Wowza, that nurse's hands flew up in the air so fast, I actually felt sorry for her.  I explained quickly what we'd just been reading and the lessons she'd surely been taught several times before, and she was perfectly happy to skip that particular portion of the exam.  Let's just assume her circulation is perfect. 

Can I just tell you that for all the frustration of her sudden lack of cooperation at her physical, how proud I am of my girl?  How relieved I am that she reacted that way?  How hopeful I am that she will not become one of those frightening abuse statistics found in women with Down syndrome?

Awesome.

I Just Have a Kid

Independence is a sneaky thing. 

For so long you dote and mind, and watch oh-so-carefully, you hold hands and cut food into tiny pieces so tender mouths don't burn, you carry and lift, find and recover, read, build, dress and put away. 

And then one day...when you least expect it...you realize that don't really have to.

One day, when you sit still, reading your own book, sitting in your own room, by yourself, you listen...

And you hear...

Your child, in another room, perhaps on another floor of the house, reading their own book, making their own bed (albeit not very well...), turning on and setting up the TV to their own shows, brushing their own teeth...  Things that all crept up on you so gradually that you almost (*gasp!*) took them for granted, something you swore you'd never do, never be able to do.  Take things for granted. 

This morning I awoke before the child, who had earlier crept into my bed at the crack of dawn to curl up and fall back asleep, snuggled close to me.  Carefully, so as not to wake her, I crawled out of bed, went downstairs, made my coffee and a bowl of cereal, and sat on the couch to eat and watch the news on TV.  Hearing no footsteps upstairs, but knowing she could have come down and joined me if she'd wanted, I ate leisurely, then cleaned up, then returned upstairs to get her up and ready for summer school.  She was awake, sitting in my bed, under the covers, watching one of her shows on DVR, after having used the remote control to scroll through the myriad of options to find the program and episode she wanted. 

I pulled an outfit from her drawer that I thought would be cute today.  Tossing it at her, I said, "Hey, girlie, please get dressed then come downstairs for breakfast."  Her response?  "In a minute.  I'm busy watching TV..."  I reminded her of what I needed her to do, then went downstairs on my own, knowing...scratch that...hoping that she would come along shortly.  Dressed. 

And, fully dressed, she did.

After she ate her own breakfast that I set on the table in front of her, she returned upstairs, to the bathroom, where I had set out her toothbrush with a dab of toothpaste on it, and a washcloth.  While I went to my own room to get dressed for work, she used the toilet on her own, washed her own hands, brushed her own teeth, washed her own face, and, beaming, came to me for inspection.  Beautiful, I said, smiling back and kissing her lightly on the forehead.

It's not always seamless, not without its issues, setbacks and resistances, not perfect, but it's an incredible thing.  And it wasn't until this morning that I truly stopped to marvel at its mere existence in my life.  The independence.  The ability.  The ordinariness of the day-to-day. 

I don't have a kid with a disability.

I just have a kid.