Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

Flashback Friday - Halloween Edition


Halloween is a fun time of year -- for our family, it's about fall and leaves and carving pumpkins and dressing up and singing Halloween songs in the car until we can't get Five Little Pumpkins out of our heads.  It's about visiting our grandma's on Halloween and letting the kids show off their costumes and saying "Trick or Treat" (even though the kids have no idea what that means.) It's about visiting a few neighbors houses if it's not too late or too cold, eating a few pieces of candy and heading home. 

For me, it's also about trying to keep candy-eating to a minimum (for the kids anyway)... keeping scary things like cackling witches and spooky ghosts and all other scary beings away from the kids.  (We already have 1 child who needs to have her closet door shut before going to bed - we really don't need anymore frightening thoughts.)

I am all about having a "cute" Halloween.  The scary stuff is definitely not for me.

I like having the costumes somewhat representative of the kids' year.  (Surprise, surprise... making costume-decision-making complicated and difficult? Who me?)  Because the kids have been too young (or completely disinterested) in picking out their own costumes, so far I have pretty much decided what I wanted them to be. (I know... so who is Halloween for anyway?)

2004

When Rylee was almost one, she was a Bumblebee.  Not much meaning behind the bumblebee... however, when I was teaching Kindergarten, I was a bumblebee.  (Not scary and an easy-enough costume to take on and off at school!)  So, the idea that the two of us could dress up together and match was completely adorable, and something I knew I could only do when she was young and had no say in the matter.  So there we were.  Bumblebees.



2005

When Rylee was almost two, she was a Ladybug.  Actually, I don't remember there being much meaning to this either.  Oh yeah... I know.  I had a friend who loaned us a cute Ladybug costume.  Is that meaningful?  (I promise... the costumes get more meaningful as we go along!)



I remember that darn hood wouldn't stay up out of Rylee's eyes... 


... so I guess she decided to kiss that hood goodbye!


2006

When Rylee was almost three, she was a Turtle.  Cutest little turtle there ever was.  Jeremy and I have always liked turtles (even before we knew each other.)  Since we've been married, we've always had at least 1 turtle in our aquarium.  (And maybe someday, I'll write a post about Lucky, the snapping turtle Jeremy found when he was the size of a nickel -- the same turtle I insisted we let go after I found it had gotten out of the aquarium, climbed up the stairs, and began scratching on our backdoor.  Yup.  They grow.)




2007

When Rylee was almost 4, she was a Monkey.  She had been our "little monkey" all year long... she loved bananas and was a silly little thing, so we gave her an appropriate nickname.  That costume was the cutest thing ever -- and when I gave her a banana during our little "Halloween Photo Shoot," it totally sent me over the top.  Adorable.

Carter was 6 months old and a Bumblebee, just as Rylee was for her 1st Halloween.  And, did I dress up in my Bumblebee costume with him, too?  Why, yes I did.  And I could tell you that the reason I'm not posting the picture is because we didn't get any, but you all know me too well. Yes, we got pictures.  So, I guess I'm forced to be honest.  I think I look like a goober in the photo, and since I can't PhotoShop the photo to make myself look un-goober-like, I am choosing not to share it.  Because it's my blog.  And I can.

(This was also the year I began doing Halloween digital scrapbook pages for the kids, and someday, I hope to go back and scrapbook Rylee's 1st few Halloweens.  You know.  When I don't feel the need to sleep at night anymore.)





2008

When Rylee was almost 5, she was Blue from Blues Clues.  Perfect fit.  She loved the show all year, and even chose to have a Blues Clues 5th Birthday Party.  (Thank goodness for reruns and DVR... I swear I've seen every episode.  Did you know that they had 2 different guys on there as Blue's friend... Steve and Joe?  When Steve left, they said he was going off to college, so Joe came on.  Steve was much less annoying than Joe.  And, did you know that Blue, the dog, is a GIRL dog?  There's some incredibly useless information for ya.)

Carter was 1 1/2 and was a Penguin.  Though we had only seen the movie Happy Feet a few times (and probably only parts of it at that) Carter picked up on the silly little dancing-of-the- feet part that the penguin did in the movie.  So, he would dance around and we'd say he was doing his "Happy Feet."  Again, adorable.  (I am now considering re-naming this post "The Post In Which Carin Over-Uses The Word 'Adorable.')





And do you know how we found out penguins like pretzels?  This little penguin wouldn't sit for pictures unless he had pretzels.

2009

And as for this year?  Drumroll please......



Rylee is almost 6, and Carter is 2 1/2.  They. Love. Shrek.  They would watch the movies every day if I would let them.  At first I wasn't a big fan of them watching the movies.  I think there are parts that aren't extremely appropriate for young kids... like when Fiona kicks the crud out of the woodsmen, or when Donkey and Shrek are snotty with each other.  But, I knew I would lose the battle with Jeremy (who would himself watch the movies every day if he could.)  So instead I have done my best to turn it into a learning opportunity.  "Now Rylee, did you hear how Shrek talked to Donkey?  Can you think of a nicer way he could have said that?  And Carter? I know they locked Shrek up in the castle so Prince Charming could marry Fiona, but that's not exactly the right way to 'get the girl,' okay?  Just remember that when you're older."

Carter had a Shrek theme for his 2nd Birthday in April... and the love of Shrek has continued. When it was time for Halloween-costume-pickin', it was a perfect fit.  And actually, there is a little symbolism of these two kids being Shrek and Donkey.  Shrek and Donkey are friends, and deep down they even love each other.  Though they argue and bicker and sometimes say not-so-nice things, they would do anything for one another.  (Hmmm.  Can you say "sibling relationship?")



So, this year, Shrek and Donkey will celebrate Halloween.  They will walk beside each other as we Trick-or-Treat, knowing that they will always be there for each other... and arguing about who will ring the doorbell.

Life with An Extra Chromosome (Characteristics of Cuteness Part 1)


When you anticipate the arrival of your baby, one of the (many) things you think about is what your baby will look like. Will she have brown eyes like her daddy? Lots of hair like her sister? There's no denying the fact that physical characteristics are definitely passed along... remember this photo?

June 2009 - 2 years 2 months (Carter... not Jeremy)

Carter definitely will not be mistaken for someone else's son.

Babies born with Down syndrome are not any different. Some of Rylee's baby pictures show resemblance to Jeremy and me as babies! Even now I sometimes have people say that certain features of Rylee look like Jeremy or me.

So, kids look like their parents. Kids with Down syndrome are no different.

However, there are certain characteristics that kids with Down syndrome tend to share. I wanted to share some of them here, because I think it's interesting.... not because I think that physical features are really all that important.

I cannot stress enough, though, that all individuals with Down syndrome are unique and may possess these characteristics to some degree or not at all.


1. Almond-shaped eyes/upward slant to the eyes

Rylee's eyes have always been amazing. Big, blue, and beautiful, with personality all their own. I don't often see the "almond-shaped/upward slant" of her eyes when they are open wide.


March 2005 - 1 year 4 months


But when she laughs, her cheeks gently nudge her eyes, almost closing them, I can see this adorable characteristic.


March 2005 - 1 year 4 months
Peeking over the airplane seat on our family vacation to Texas


2. Flat or slightly depressed nasal bridge

Not much more I can say about that. Here is Rylee's beautiful face (at an angle that shows her nasal bridge well.)

August 2004 - 9 months


This characteristic can create challenges if kids need to wear glasses -- it's difficult to keep the glasses up on their faces. (Fortunately, there is actually a company that has designed glasses specifically for kids with flatter nasal bridges! Cool, huh?!) So far, Rylee's vision screenings have been good, so we'll cross that bridge (no pun intended) if we need to.

However, Rylee does like to wear sunglasses.

Sometimes they stay up...


August 2006 - 2 years 9 months

and sometimes they don't.

June 2006 - 2 years 7 months

But, then again, it might be more of a "kid issue" than a "depressed nasal bridge" issue because Carter, who does not have a "depressed nasal bridge" has issues with sunglasses, too!


August 2008 - 1 year 5 months


3. Single Transverse Palmar Crease (or Simian Crease)

Look at your palm. Most of you will notice that you have 2 creases going across your palm... one comes in from the left, and one comes in from the right.

On the other hand, some of you might have a Single Transverse Palmar Crease (or Simian Crease.) This is a single crease that extends across the palm of the hand (formed by the fusion of the two palmar creases that people typically have.)



Simian creases appear in approximately 1 out of 30 people (with males being twice as likely as females to have this.) It is a physical characteristic often associated with Down syndrome.

However, I do know of kids with Down syndrome that do not have a Simian Crease, and I do know of people without Down syndrome that do have a Simian Crease.
So, even though it isn't exclusive to individuals with Down syndrome, I wanted to share. Because I think it's interesting. And, because Rylee does have a Simian Crease on both of her hands. And, because I think her hands are especially adorable. See?


September 2004 - 11 months old


4. A Little More Room Between the Piggies

Rylee has a little gap between her first and second toes. I have no idea if/how this has any effect on her... except that it gives her feet a little more character. I, personally, wish my toes were this darn cute.

September 2009 - 5 years 10 months
This photo is actually courtesy of Rylee... she loves taking pictures with my small camera,
and the last batch of photos I downloaded had this adorable picture of her foot that she took.
Apparently she thinks her feet are adorable as well.


And speaking of feet... here was the result of Rylee's first toenail-painting experience. If you didn't already know, there is a direct correlation between the number of toenails painted and the length of time in which a 3-year-old can sit still.

November 2006 - 3 years old

Please remember that all individuals with Down syndrome are unique and may possess these characteristics to some degree or not at all.

These are some of Rylee's characteristics...

July 2004 - 8 months old

and we love every single one of them!

Life with An Extra Chromosome (Adaptive Movement)


Jeremy and I truly believe in inclusion. Rylee goes to a "typical" Kindergarten, and has "typical" students in her classroom. We have done lots of activities since she was a baby (Kinder-Musik, gymnastics, swimming...) in which she was included among other kids her age. With lots of kids comes lots of abilities... lots of similarities, but also lots of differences.

Yet, I think all of us like being involved in some things in which we feel just a little bit more like everyone else. And, maybe for Rylee, right now she does feel that way. I think that is the beautiful innocence of being young.

The truth of the matter is... we haven't really talked about Down syndrome with Rylee. I have such mixed feelings about how to go about doing this. I think it would be difficult for Rylee to understand at this point in her development now, which (fortunately!) gives me some more time to sort it all out.

On the one hand, I know that sometimes things aren't seen as a "big deal" to kids until, of course, you talk about it. Point it out to them. And then it becomes a big deal. I don't want Down syndrome to be a big deal to Rylee. It is just part of who she is.

Yet, on the other hand, I don't want other kids at school to be the ones to tell her she has Down syndrome. (Wow... I definitely would lose my nomination of "Mother of the Year" if Rylee came home one day from school saying, "Everyone tells me I have Down syndrome. Do I?") That is, if I didn't already lose my nomination when I bribed my kids with ice cream for good pictures.

I also believe that in order for her to understand who she is, she has to understand everything about herself. For her to be a self-advocate as she grows up, she has to understand what having Down syndrome means for her. Everyone deserves to know, understand, and embrace their own strengths and weaknesses.

I want Rylee to feel just like everyone else. Yet I want her to know she is different, just as every child is different. I want her to be proud of who she is, and feel accepted and valued among the people she surrounds herself with.

So, to give Rylee the experience of feeling just a little bit more like everyone else, (maybe a bit more than she does in her other environments) she is in a dance class called "Adaptive Movement for Children with Down Syndrome." The class was started several years ago by a phenomenal teacher at the local Dance Gallery, and there are now 2 classes divided into age groups. The kids perform each year at our Buddy Walk, as well as other local events. The performance always seems to be the hit of the event!

Not only do the kids have a great time in class, twirling and laughing and jumping and making silly faces and enjoying each other, but the teacher is very aware of the physical challenges kids with Down syndrome have (to various degrees.) Because of the characteristic of hypotonia (low muscle tone) the activities focus on strengthening muscle tone, balance, posture, and movement awareness. Add in the elements of performance, self confidence, rhythm, creativity, concentration and practice at following directions and you've got an amazing experience!

Rylee loves going to dance class. She doesn't know everyone else in class has Down syndrome. But, someday, when she does know, maybe she'll feel just a little bit more like everyone else on Thursday nights.












"Not Me!" Monday!




I have been meaning to write a "Not Me! Monday!" post for, well... several Mondays.  In fact, I have even scribbled down some things I have haven't done this last month or so.  You know, just so my mind didn't go blank the second I sat down to write my "Not Me!" post.  Not that my mind ever does that.

(This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week!)

This month I did not clean up gobs and gobs of dried glue off the wood floor in my office.   I always supervise my kids when they are using glue to be sure the proper amount of glue is being used.  I would never just give them glue bottles and let 'um go!

This month I did not bake the really easy "pull-the-dough-apart-and-set-on-cookie-sheet" chocolate chip cookies for our neighbors (who let our kids play on their swing set all summer, even though we have our own.)  I would never be so lazy as to go to such little work to show appreciation!

This month I did not eat my weight in raw chocolate chip cookie dough (while making the above-mentioned cookies.)  The package specifically told me not to eat it, and I always do what I read.  I would never do something that may put my health in jeopardy.

This month I did not "accidentally" forget the kids' Elmo CD in the house before heading out.  I know they love listening to that CD on the way in to town, and I would never "intentionally forget" something just to keep my brain from exploding at the sound of a puppet's voice.

This month I did not bribe the kids with a treat while taking pictures for our Christmas card. Our kids always sit so nicely and smile their true, genuine smiles every time I ask.  I would never have to resort to bribery, which is something I said I would never do before I was a Mom and needed good Christmas card pictures.

These are not our children, because our children would never make silly faces or cry or try to escape during a mini-photo shoot.  Never.






Happy "Not Me! Monday!"

Life With An Extra Chromosome (3 Types of Down syndrome)


For Down Syndrome Awareness Month, I've been posting facts on Facebook about Down syndrome. (I guess what the facts were about was quite obvious... it wouldn't make much sense to post facts about growing a garden during Down Syndrome Awareness Month.)

But, for the ga-zillions of you who are "Facebookers," you know that there is a limit on the number of words you can type in one status update. (Not exactly convenient for someone like me who.... well, likes to talk.)

I wanted to share with you all something that very few people know...

There are actually three different kinds of Down syndrome.

Crazy, huh?

1. Non-disjunction Down syndrome (Trisomy 21) occurs in 95% of all babies born with Down syndrome. This type of Down syndrome occurs because of an "error" * in cell division. The "error" happens either before or at the time of conception. What happens is that a pair of the 21st chromosomes (in either the egg or the sperm) do not separate properly. This extra chromosome is then found in every cell in the body. (This is the type Rylee has.)

* I got this description from a reputable website, however I am not thrilled with the word "error." The dictionary defines "error" as "a mistake." I definitely don't see this as an "error." I think chromosomes know exactly what they're doing... *smile*

2. Mosaic Down syndrome occurs in about 1-2% of all babies born with Down syndrome. In this type of Down syndrome, the "error" in separation of the 21st chromosome occurs in one of the first few cell divisions after fertilization. This causes the fetus to have some cells with 46 chromosomes (the typical number) and some with 47. So, not every cell contains an extra 21st chromosome. (There is no rhyme or reason as to which cells have the extra chromosome.) Because not all cells contain the extra chromosome, individuals with Mosaic Ds may not have all of the physical characteristics that are typical with Non-disjunction Ds.

3. Translocation Down syndrome occurs in 3-4% of babies born with Down syndrome. In this type of Down syndrome, a part of chromosome 21 breaks off and attaches itself to another chromosome (often chromosome #14.) This causes all cells in the body to have the extra piece of the 21st chromosome. When a child is born with this type of Ds it could mean that one of the parents is carrying chromosomal material that is unusually arranged, but this is not always the case.

So there you have it... 3 different types. Are you feeling smarter now?

*****

Rylee - 1 month old

When Rylee was younger, I remember some people asking questions that eluded to the possibility of there being different degrees of Down syndrome. A little part of me wanted to giggle and say, "Well, are you a little bit female or all female?" (Oh... bad example. In this day and age there may actually be individuals that are just a little bit female, but I'm not going there.) What I mean to say is that either you have Down syndrome or not. There are no degrees... no levels... no "a little bit of Down syndrome." You have it or you don't. Period.

Others have asked me along the way if Rylee is "high-functioning." This is another interesting question. Actually, it's a question that I have thought about more over the years, and I'm not a fan of it. People usually ask this question if they perceive the child to be doing things "well"... maybe the child's speech is understandable to them; maybe the child is accomplishing things that they assume children with Ds have difficulty with. The question is asked in such a way that, if the child is in fact "high functioning," that is such a good thing. So, on the contrary, if the child is not "high functioning" then it is a bad thing.

Do we really need to give our children another label? Rylee isn't "high-functioning." She isn't "low-functioning." She functions like Rylee.

*****


Rylee - 3 months old

Think about the wide range of abilities and physical characteristics of "typical" individuals. Individuals with Down syndrome are the very same way. The diagnosis of Down syndrome doesn't mean every child will be the same... even if they have the same type of Down syndrome, there are still differences.

Just like I said in one of Rylee's letters, if you want to know what an individual with Down syndrome is like, don't assume you know -- get to know them.

I think you will be quite happy you did.

Life With An Extra Chromosome (Down Syndrome Awareness Month)


So am I the only one with a list of "Blog About..." ideas?

And if I'm not, am I the only one whose list is getting so long that I'm overwhelmed every time I sit down to blog?

• I owe you all a post about how Kindergarten is going for Rylee (many of you have asked.)

• I owe you all a post about the great success of our Buddy Walk last weekend (many of you have asked.)

• I owe you all a post about Rylee starting dance class (none of you have asked but I will share anyway because I have some pretty darn cute pictures.)

Even though I owe you all of these posts, I am not posting about these tonight.

Instead, I am posting about DOWN SYNDROME AWARENESS MONTH!

When I was 20 weeks pregnant... (now I know some people say "when WE were 20 weeks pregnant..." you know, just to give a little credit to the husband -- but let's face it -- he wasn't the one that threw up for 7 months, got really chubby and had ankles swell the size of tires) we found out that Rylee would have Down syndrome.

We didn't know then, as much as we know now, that Rylee was born to change the world.

Years from now, when our family and friends can say the world is a better place because she was here, then she will have succeeded.

Sounds like a pretty good definition of success to me.



Rylee Jayne Griffith, just minutes old