Growing Up

The little ones in my life finished their school year a few days ago.   They started the school year thinking they would be in the South for who-knows-how-long...and finished the year in the Midwest. 

They grew and changed and embraced change and made me one proud momma.

T-Man took the changes in stride.  He smoothly transitioned from one climate and culture into the next.  He is a helper, a leader, a reader, and radiates positivity.  Ironically, his name means "long-winded talker" and "cheerful".  Both of those meanings fit our little T-Man perfectly.  And I love him to pieces for both of those qualities.

Fearless had the hardest time with the changes--he is one that loves the routine and anticipating what is coming next.  Moving and starting over with new school rules, new friends, new climate...it took awhile for him to adjust.  But being the little rock star he is, he realized he was having a hard time and every night he would pray that he would be happy.  And each day he tried hard to choose to be happy. 

That attitude is pretty grown-up for a five year old.  I'm so proud of him for pushing himself to grow and embrace the change. 

And this little lovey?  She's still my doll-baby; but she's grown-up too.  She loves her independence and is communicating what she needs and wants like a champ.  And although we lovingly refer to her as our little F5 Tornado (or just F5 for short) I love her curiosity and her sense of adventure.  I love hearing about what is going on in her mind. I love learning what is important to her, so it can be important to me too. 

Having them all home everyday means that our home is full of ruckus & chaos at any given moment--and surprisingly, it doesn't bother me.  Just having them close and deepening our relationship is worth all the noise and Lego messes.

Yay for 3 months of uninterrupted time for me to spend with my little ones!!

Bring on summer!!

Moving Up.

It's been a busy Sunday, so the BuddyWalk post will have to wait until tomorrow.  Instead, Miss Banana has exciting news:

If you look waaaay back there, you can see my little lady sleeping in her big girl bed for the first time.  We've had her bed for ages.  I haven't moved her over because I wasn't ready  I didn't think she was ready. 

All this time, her bed has been sitting there, neatly made--brand new sheets, brand new-homemade-by-mom quilt--just waiting for Miss B to crawl inside.

Tonight she did.

How is that even comfortable?!!??

She didn't make a peep, fell asleep right away, and didn't even flinch when I went in rudely disturbing her sleep with a camera flash to preserve this moment for posterity. 
Here's hoping it continues to be a smooth transition.

Speaking correctly.

I'm a bit of a stickler for my children pronouncing words correctly and using proper grammar.  I know this is slightly hypocritical of me; I'm sure my blog posts are riddled with improper punctuation and word choice.  Despite my flaws, I do make an attempt to speak correctly and I expect my children to speak well also.

T-Man is a talker.  He has a huge vocabulary and can make conversation with anyone about any subject.  In fact, sometimes we have to remind him that other people need a turn to talk.  In all of these conversations, his pronunciation is usually flawless...at least it was until last night.

He came home from school with a tooth about to fall out of his head. 

I gave it a little push, and out it came.

Poor kid, definitely going to need braces.

And now words like "police" are being pronounced "pol-isth".  And "rice" is "rye-th". 

Strangely, my language OCD is not bothered by this yet; in fact, I find it adorable.  Although it is pretty hard to take him seriously when he tells us to "Sth-op laughing!" whenever he talks.

Love you, T-Man!!

And while we are speaking about language, in honor of Down Syndrome Awareness Month, I thought you all would like to know how to speak correctly about Down syndrome.  When I first got Miss B's diagnosis, the NDSS website was one of the first places I went for information.  I read and re-read reading all of their "About Down syndrome" pages a gazillion times, trying to soak it all in.  I remember thinking that I had no idea how to speak correctly about Down syndrome, about my baby.  Oy! I had a lot to learn!

I know most of you already say these things correctly;  thank you for being respectful and sensitive and for using the preferred terms and language when you talk about my little lady and all of her Trisomy 21 brothers and sisters.
Here's the "Preferred Language Guide" from the National Down Syndrome Society's website:

Below is the proper use of language for “Down syndrome”:
• Down vs. Down’s - NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome,” as well.
 
• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
 
• Down syndrome is a condition or a syndrome, not a disease.
 
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
 
• While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability”. NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

Half Birthday.

Six months ago today, Miss Banana turned two. 

  

At the time, I still thought of her as my baby--my little one.

But in the past six months, she has decisively grown out of babyhood and is solidly a toddler/preschooler.

Gone are the days of Mommy picking out her clothes.  Gone are the days of being able to keep her from climbing on the table.  Gone are the days of needing me for everything.

Once my girl discovered all the things she could do for herself, she decided she wanted to do them.  She is probably going to be just as stubborn and opinionated as her mother.

As a new parent of a child with Down syndrome, I worried about my child taking a long time to move to the next stage--all the questions about the timeline of the future swirled in my head; trying to stifle the joy to be found in the present...when will she crawl?  when will she walk?  when will she talk?  will she ever be able to do things for herself??

As I've watched Miss Banana grow and develop, I've found myself asking the "when will she ____?" questions a lot less and the "What's the big hurry?" question a lot more.

And I've discovered that there is no hurry.

Whether she reaches the next milestones quickly or stays behind...my little lady never fails to move on--she's constantly working, progressing, growing, becoming all she is meant to be.

While I miss my Miss Banana-baby, there is lots of joy in my little lady as she is now. 

Her future is bright; I'm so thankful that I get to be part of her life.

Miss Banana, I love you to the moon and back.

Adventures in Educationland: Miss B's Evaluation and First Day of Preschool

Welcome to a new series here on Life As We Know It.  Now that Miss B is getting older, her education is moving to a more formal setting.  Because I am absolutely positive we will have Adventures in Educationland with her, this will be a continuing series involving our experiences.  And, because sometimes T-Man and Fearless have crazy education stories as well, we will not limit the stories to just Miss B.  Enjoy!

When we first told people that we were moving to The Village here in our little corner of The South, the majority of people expressed their concern over my children's educational opportunities.  And while some of those fears have been substantiated, I am always pleasantly surprised when they are not. 

Miss B's new preschool is one of those pleasant surprises. 

I had some misgivings about sending Miss B to preschool because she is not quite two and a half...but I felt that the Special Instructor (a lady that I love to pieces and would adopt into my own family) just wasn't as effective as a more structured educational program would be.  After having visited her Preschool and talking with the teachers and the director..I am confidant that I made the right decision.
Her school is located on the University campus, and is run by people with Master's or PhD's in special education or a related field.  University students studying pertinent subjects (educational psychology, special education, early childhood education, etc) spend a semester helping in the classrooms.  The class sizes are small (only 6 kids in Miss B's class), the classrooms are well supplied, and it's free.

I swear it's like someone read my preschool-wish-list, waved their magic wand, and *poof* Miss B gets everything she needs.  The founder of The Center has surely earned his spot in heaven.

Last week, Miss B went in for her first Educational Evaluation.  And it was frustrating and satisfying at the same time.  Knowing that this was the first of many pieces of paper that would be placed in her file, the pressure was on.  I was a bit panicked during the test because there were somethings that I knew she could do, that she just wasn't interested in that day. 

Come on Miss B, show them you can kick the ball! 
I know you can kick the ball. 
No, don't run down the hallway...Come out of the bathroom--let go of the toilet paper! 
The ball, remember the ball? 

Zero points for that one.

But then there were also times when she shined and let her personality show.  Like when the speech therapist placed a few toys in front of her and asked her to put the toy dog on top of the yellow paper.  Miss B was more interested in playing with the baby doll...until  the lady asked the 3rd time...and Miss B gave her a dirty look, picked up the dog, slammed it down on the yellow paper, and then went back to the baby.  There, I did it.  Will you leave me alone now?!

In the end, I shouldn't have worried at all...because my girl rocked that test.  As in: only-significantly-delayed-in-one-area.  As in: average-or-higher-than-average in all other areas.

Have I ever mentioned that my daughter is a Rockstar? 

Just sayin'.

And it was the simple fact that she has an extra chromosome in every cell of her body that got her into Preschool.  If they went just by the test results, she'd be too "high functioning" to qualify. 

Thank you, little extra chromosome!!

Her first day was yesterday, and she did fabulously.  To quote her teacher, Ms. E, "Miss Banana had a GREAT first day!!  She is going to LOVE this!!"

And now comes the moment we've all been waiting for--pictures of Miss B on her first day of school yesterday.

(Please note that when we went shopping for her 1st Day of School outfit, Miss B picked this dress out herself and wouldn't let go.  The checkout lady wasn't even allowed to put it in the bag--just scan and back in Miss B's arms.  She is totally going to be a fashionista.)

Umm, Mommy?  I'm not sure about this backpack thing.



Whoops!  Down I go!



A Very Merry Birthday

Today is Miss Banana's 2nd Birthday.



I'm so glad she decided to join our family.  We wouldn't be complete without her.

A cheesy smile.  Literally.  She was eating goldfish at the time.

She is our little ray of sunshine. 

Thank you, little lady, for being our little bundle of joy.

At two years old, Miss Banana:

• Wears size 3 shoes.
• Can say mommy, daddy, stop, eat, more, this, that, up, hey, shoe, block, ball, book
• Can sign cracker, more, eat, shirt, get dressed, sleep, pillow, book, grapes, apple, sorry, thank you, I love you, play, red, rainbow, colors, potato, stop, wait, wake up/awake, grumpy, dance, jump, walk, cheese and I'm sure there are more, but that is all I can think of off the top of my head
• Wears size 24 month/2T shirts and 18 month pants
• Can feed herself with a fork and spoon
• Walks about 80% of the time
• Can do all the fine motor skills that her typical peers can do
• Loves to swing
• Favorite foods are fishsticks, sweet potato fries, smoothies, any sweet treat and any other type of junk food (She has sixth sense that can detect junk food nearby.  And you will be on her black list if you don't share.)
• Turns on the cuteness and big smiles when she is trying to get out of working hard in occupational, speech or physical therapy ("I can't do that...but look how cute I am!!")
• Has hair long enough to french braid
• Has everyone wrapped around her little finger

Happy 2nd Birthday, Miss Banana!!

More birthday celebration to come.

Tempation

I'm pretty much a what-you-see-is-what-you-get kinda girl--which has its good points and its bad points...it does mean that I end up speaking my opinion (and probably irritating a lot of people) WAAY too often when really I should just keep my mouth shut, but it also means that I'm pretty open and honest.

Over the past few days though, I've been tempted to break that policy.  Let me explain:

In the past week there have been a plethora of people asking me how old Miss B is.  While that may seem like a fairly innocent and harmless question to most people...for Miss B, it's not.  It's complicated and anxiety provoking and makes me want fib a bit because she's not doing all the things a typical 18-month-old would do.

I was at the park the other day with Miss B and Fearless when a mom with 9-month old twins came up to me and asked if her sons could sit and play with Miss B.  She plopped them down next to her, and they were all about the same size.  They were doing about the same things--sitting, crawling, putting leaves in their mouths...Miss B was a little more social and wanted the boys to play with her...but at first glance, you would have thought they were all the same age.  While making small talk, the mom asked how old Miss B was.  I paused for a minute, considering.

Should I tell the truth? or fudge a little bit?...or maybe I should just say "One" and leave it at that...or maybe I could say "her birthday is in April" or maybe I should just say it like I did with the boys and say how many months she is...

I eventually decided on the last option due to my desire to try raise Miss B just like my other kids as much as possible.

After what was probably a longer than socially acceptable pause for such a simple question, I finally busted out with "18 months" and she started eyeing Miss B a little more closely.  In fact, she gave her the full on, up-and-down eye sweep.  And then after another 30 seconds or so, she picked up her twins and moved a few feet away.  There was no specific reason that I could see to move her kids away...and it wasn't like they went that far...maybe the mom was just tired of my small-talk but it seemed odd that our little spot was no longer suitable so soon after I stated Miss B's age.  I tried to brush it off, thinking that I'm probably just over sensitive.

But then it happened again while we were at the pumpkin patch yesterday.  Miss B was playing happily in the corn box (cute pictures to come later!) when another mom started smiling at her and saying how cute she was...and the she asked how old she was.  When I said "18 months" (still determined to do it the same as I did with T-Man and Fearless) the mom gave Miss B the same scrutinizing gaze that makes me want to grab Miss B and hide her behind me.  All the smiling, cooing, admiring was gone and replaced with a piercing stare.  End of conversation.

And then it happened at the grocery store.

And then it happened on the soccer fields.

And I'm sure it will happen again.

I'm also pretty sure that if I just said she was a bit younger, we would avoid the staring.  But Miss Banana IS 18 months old.  And she is doing a zillion great things.  So why should I have to lie about her age to avoid people's stares?

And why do I care if people stare?  Why am I even tempted to lie about a silly thing like her age?  Miss B is an amazing little girl and if people can't handle that she's not walking or talking like her typical peers, that's their problem. 

Part of the problem is that I need to be better about not caring about what other people think.  I don't usually care what people think when it relates to myself, but for my children?  That's hard.  Especially when Miss B has done nothing except have an extra chromosome to draw people's stares.

I have the feeling that in the long run, the stares aren't going to go away and we will all just have to get used to it.  Maybe someday I'll get to that point.  Not there yet though.

One and a Half

Today is Miss Banana's 18-Month Birthday!

Here she is at 6 months:

And here she is today!

  

At 18 Months, here are few of the things that Miss B is doing and learning:

Feeding herself and learning to eat with a spoon and fork.

Loving to swing.  She would do this all day if she could!

She can crawl up stairs.

But not down.

(But she thinks it's funny to fall down them....good thing Dr. C is there to catch her!)

She loves snuggling with Dr. C and will follow him around after work until he picks her up.

 She has a blast in the bath--especially when there are bubbles.

Loves to play outside.

And occasionally eats some dirt. Yum.

And in general is happy, healthy and full of fun.

Here are some other things that Miss B can do:

-Say mama, dada, eye, banana, okay, up, more

-Assist getting herself dressed and undressed

-Shop like a pro

-Crawl everywhere

-Cruise around furniture

-Stand unassisted for 3-5 seconds

-Take one step

-Yell at the top of her lungs to let you know she doesn't like something

-Correctly put together a 3-shape puzzle

-Turn pages of a book, one page at a time

-Give anyone the "I'm so cute!" smile and get whatever she wants

Down Syndrome Q&A

Since October is Down Syndrome Awareness Month--I'll be spending a little more time on Ds than I usually do.  (Ha!  Some of you probably think that's the ONLY thing I talk about anyway!  Be prepared for more!)

These are some questions people have actually asked me about Down syndrome--and experience tells me me that if one person actually ASKS the question, then other people are probably thinking the same thing, they just don't speak up.

A lot of these questions can be found on the National Down Syndrome Society's (NDSS) website, but I've added in some of my own thoughts as well.

What causes Down syndrome?

From NDSS:Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.

This is the type of Down syndrome that Miss B has.  Dr. Genes, our fabulous geneticist that studied the Miss B's chromosomes, referred to it as "your garden variety Trisomy 21".  Ha!

Did you do something when you were pregnant that caused Miss B to have Down syndrome?

No.  According to Dr. Genes, there is nothing that anyone can do to cause or prevent nondisjunction from occurring.  It just happens.

         From NDSS:

The cause of nondisjunction is currently unknown, but research has shown that it increases in frequency as a woman ages. There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents' activities before or during pregnancy. 

Oh, and for those of you that were taught in school that Down syndrome occurs because the mother did a lot of drugs...I (and I would guess the majority of mothers of kids with Ds that I know) am living proof that that is simply not true.  I have never done any sort of drugs in my life--I've never even had a drink of alcohol and never touched a cigarette for that matter either.  I have to be in some serious pain to even take Tylenol--which is just about the safest drug out there...so if you would please correct your teachers on that one, I would appreciate it.

But you're not old enough to have a child with Down syndrome?!  I thought you were "safe" until you were 35?

Surprise!  Due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

And honestly, Miss B is so fabulous that I am grateful that I was not "safe" from having a child with Down syndrome.  We feel like the lucky ones!

Miss B is ALWAYS happy!  But then all people with Down syndrome are like that I guess.

In general, Miss Banana is a pretty content little lady.  She likes to smile, she likes to laugh, and she goes with the flow.

But...you should see here when you get out her favorite food (bananas) and then pretend like you aren't going to share with her.  She can throw a tantrum--complete with yelling and crying--to rival the best of them. 

Or, try to go outside and not take her with you...and then be prepared for her to give you the cold shoulder when you come back in. 

Or watch her older brothers try to play with toys without her...and she will throw some elbows and pull some hair to fight her way in. 

Trust me, she is not ALWAYS happy.  She has a full range of emotions, just like people with 46 chromosomes do.

And compared to the boys, I can already tell she's going to be a bit more of a drama queen then they are...but I think that's due to the fact that she has two X chromosomes...not that she has an extra 21st chromosome!

I am so sorry that you will have to deal with a severely retarded child.

I know people mean well when they say things like this...especially right after we received Miss B's diagnosis...but...PLEASE don't say this to a mom with a brand new child with Down syndrome.  No one knows the full capabilities of ANY child and it kind of stings when people automatically assume that Miss B will never learn and will never be able to participate in society in a meaningful way.

From NDSS:

Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

I know the term "mental retardation" is not the favorable term right now...especially since the word r*tard is used as derogatory slang.  But what should I call Miss B's diagnosis?

While I don't prefer the term "mentally retarded"--mainly because of the negative stigma that the word r*tarded has taken on--when used in the medical sense, I don't cringe as much.  It's not my preference, but it has been used for years, so I don't get all worked up about people using it as part of her diagnosis.  If you use the r-word as slang though, you are making fun of my daughter and I become mama bear.  Just FYI.

Recently though, the federal government changed their wording to refer to people with Down syndrome as having an "intellectual disability".  Or, you could also just simply say she has a "developmental delay."  Either one is perfectly acceptable.

I have heard the term "handi-capable" and I like that one--probably not going to show up on government forms though!

Those are just some of the questions I've gotten in the past few months.  If you have any other questions, please let me know!

Medical Adventures with Miss Banana: 15 Month Check-Up and a Clean Bill of Health

Miss Banana had her 15-Month check-up and I am very happy to report that it was a NON-adventure!  Hooray!  We got all of her blood work results back and everything looks fabulous.  She's growing some--she now weighs 20lbs. 11oz.  and 29 1/4 inches long.  Which puts her just below 75% for her peers with designer genes and just above the 10% mark for her typical peers.  Not too shabby!  You can tell a difference when you pick her up now--it used to be that she was this little air-baby, but now she's starting to chub up a little.  Hooray for healthy, baby-fat rolls!  This visit was also the first time EVER I have walked out of Dr. SouthernKids' office without 3+ prescriptions to fill for Miss B.  That on its own is a major milestone!

With her new found weight, we decided that it was time to move her out of her infant seat and into the convertible one.  She loves the new seat; now she sits up higher and can see out the window better, but I'm struggling with it because now she has to sit in the top of grocery carts and she can pull stuff off the shelves!  Ahh, the joys of toddlerhood.

Side note: I don't think I've ever enjoyed all those little crazy things that toddlers do as much as I do with her.  She can now get into cupboards, pick up little grodies off the floor, and she tries to climb into the dishwasher.  And while I know I should be correcting her behavior, I find myself cheering that she is stable enough to open the cupboards and pull everything out.  Or that she is using a perfect tip pincer grasp to pick up tiny things off the floor.  Or that she has the gross motor skills to climb up and pull the rack out of the dishwasher...each of those acts represents hours of occupational  and physical therapy work and are cause for celebration!

I'm crossing my fingers that maybe this is the tapering off of all the crazy medical adventures with Miss B.  (Knock on wood...I'm probably shooting myself in the foot by even saying that!)  Here's to a healthy future!

T-Man: The Kindergarten Graduate

Last week, T-Man finished kindergarten.  When did he get so old??  When did  I get old enough to have a child finishing kindergarten?!?  This post is for him.

T-Man on the first day of kindergarten.

                                         

T-Man on the last day of kindergarten.

T-Man,

You are truly an amazing child.  When you started kindergarten last fall, I was a little worried about you.  You were (and are) the absolute youngest kid in your class.  A lot of people told me I should wait to put you in kindergarten.  We were in a new place where people spoke with an accent that was hard for you to understand.  Your sister was still new and you were still recovering from the stress of her birth and heart surgery and the cross-country move.  But I knew you and your ability to learn easily and work hard.  So off to kindergarten you went. 

And you breezed through the year with no problems.  You made friends.  You learned how to read, and read well.  You learned how to write, and write well.  You learned how to count money and recognize different patterns.  You learned how to add, subtract and even some multiplication.  You learned about good manners--including the Southern "yes sir/yes ma'am"--and then you have tried to be more of a gentleman at home too.  You were the "Terrific Kid" twice.  You even picked up some of that accent that you didn't understand at first.  Your love of learning blossomed as you grew.  Your constant quest for knowledge is exhausting to me sometimes, but I love how eager you are to learn everything about EVERYthing...even though I don't know the answers to all of your questions.  I love that you think highly enough of me that you think I should know everything!

You have a tender heart.  You set a good example for your brother and sister of cheerfulness and kindness and generosity and inclusion.  You are quick to forgive others of their faults and you like to have things be peaceful and happy in our home.  You are a great helper and I love how I can count on you to be obedient when I ask you to do things.  You try so hard to do what is right!  You have a light that shines brightly and draws people to you.  You have more wisdom and understanding about the purpose of life than five years of life usually allow.  You are a joy to be around.  You are a great blessing in my life.

On graduation day, Mrs. Stegall told me that she thought this would be the first of many graduations for you.  And I think she is right.  You will go far, Little Man.  Nothing can stop you from achieving whatever it is you want to do. 

I love you!

Love,

Mommy

Getting his "diploma" from Mrs. Stegall and Mrs. Cork.

The Happy Graduate

(We tried to get a good graduation-jump picture. Not quite what I was hoping for, but we went with it.)

T-Man and Mrs. Stegall--his fabulous teacher!