World Down Syndrome Day (and a bite sized blog hop)

Today is World Down Syndrome Day (3/21 for 3 copies of the 21st chromosome), so today we are celebrating.  We are proudly wearing our blue and yellow. I want people to ask about Claire, to ask about Down syndrome.  To learn what is true, and what just simply isn't.  Today I am joining in a bite sized blog hop to spread truth, and a little cuteness too.

Fact:

My life is different from yours.

Yep, it is.  But not because of Down syndrome or Claire.  My life is different from yours because we are different.  No two people walk the same path, or have the same experiences, and while Down syndrome may have sent us on a different path, different is by no means bad.  Claire is an amazing, independent, funny girl and I am proud to be her mom.

Fallacy:

People with Down syndrome are always happy, and such sweet little angels.

I know this myth has been shared so many times, but it is the one I hear all the time from people outside the Down syndrome community, so it apparently needs to be shared again.  People with Down syndrome experience all the emotions that any other person does.  Happiness, sadness, frustration.  Claire is proud when she works hard and accomplishes a goal.  She is sneaky when she is trying to get away with something.  She is both loving and a bully with her sister.  Claire is a person, just like you and I.

Photo:

Happy Birthday Bridget!

Happy Birthday Bridget!!

Wednesday is my day off, and papa was out to play with the girls yesterday, so we decided to have Bridget's cake a day early.

She was not too sure about the candle.  Claire, on the other hand, was super excited so she got to blow it out.

First taste

Claire ate more cake at Bridget's birthday than she did at her own!

Bridget had to pause in the middle of cake eating to sign 'dad' and then shoot him a smile!

Signing 'all done'

Bridget got twin babies for her birthday.  I hoped this would help by giving them each one to play with, even though one of them has been designated as Bridget's, and we don't make her share that baby.

Happy Birthday sweet girl! 

Spread The Word To End The Word

Today is the day to Spread The Word To End The Word.  This is the fifth anniversary of a campaign to end the use of the R word.  I've written about the word before, how it's use hurts my heart.  But no matter what I say, John Franklin Stephens says it better.  He is a self-advocate, an adult with Down syndrome, and he is offended by the use of the R word as an insult.

John Franklin Stephens' Open Letter to Ann Coulter on using the R word

It doesn't matter if you didn't mean it that way, or you weren't thinking about someone with Down syndrome when you said it.  The fact is, the word is hurtful and insulting.

Period.

All the good stuff

Thank you so much for all your comments and emails on my last post. It's so easy to get caught up in the hard behavior.  I find it happening more than I like these days.  Then we have a great weekend (minimal fighting on all fronts), and I feel bad for focusing on the hard stuff.  It isn't all hard, but the hard can be really hard.

So, today I'm going to focus on the good stuff.  The hilarious, smart and awesome girlie that Claire is.

Yesterday was beautiful.  Mid-60s and perfect park weather.  After nap we loaded the girls up in the stroller and walked to the park.  When we got there there were a few kids there, and one a set of girls, one older and one younger than Claire.  They started playing on the slide together, and I was so proud of Claire.  The first couple of times up the stairs to the slide Darren went with her.  At first helping, then just spotting.  By the third or fourth time she was going all by herself.  Up all the stairs using the railing, and down the slide all on her own!  While she's been able to do this for quite a while she always gets a bit overwhelmed, and I was proud of her independence today.

Claire is working hard on speaking and will at least try to say any word you ask her to.  She's learned that her words have power, and she's willing to use them.  Her newest thing is "bye".  Not goodbye because you are leaving, but "bye" because she wants you to leave.  (Usually after you've asked her to do something she doesn't want to.)  If you've really made her mad she'll tell you "bye", then sign to put your coat on and go in the car.  Not just leave me alone, but leave the house!

Claire is such a daddy's girl.  No matter what is going on, as long as he is near by, she will at least attempt what is being asked of her.  Including getting close to the super scary calves.  This was a set of twins that were just a few days old.  We did a similar photo shoot when Claire was about Bridget's age, and Claire loved the calves.  Not so much this time.  But at least Dad and uncle Russell were there to protect her!

I'm Jealous

I read a lot of blogs.  Many of them have families where at least one child has Down syndrome.  Most of the kids are similar in age to Claire.

I read these other blogs, get glimpses into other families, and I am consumed with jealously.

It's not the perfectly decorated houses, the perfect parties, or the perfectly organized homeschooling moms I'm jealous of.  The sentence that I am most jealous of is...

The kids were playing in the living room while I was in the kitchen....

Yes, sometimes sentences like those are followed by crashes where something gets broken, or it is followed by tears as a toy is stolen or someone is pushed, but I'm still jealous.

Because I can't leave the girls alone for even one minute.

Claire is still scratching/biting/pushing, and her favorite target is someone smaller, slower, and younger than her.  Bridget's face always has at least one scab or scratch in some stage of healing.  A couple of days ago Bridget was bitten twice, once on the cheek, once on the hip, and she was sporting teeth marked shaped welts for days.  There are days when Bridget will start crying when Claire simply looks at her.

I literally cannot leave them alone for a second, and it is exhausting.   I'm not talking about long stretches of unsupervised time.  I mean I cannot leave them playing in the living room while I load the dishwasher.  I cannot walk down stairs to start a load of laundry.  I cannot wash my hands without making sure that Bridget is tucked between my legs and the cabinet so that I can block Claire's attack with my body if I need to.

I know we will eventually get this behavior stuff under control, but right now I am sooooo tired of it.  I'm tired of fighting with her, I'm tired of time out not fazing her, I'm tired of having to be "on" when ever I am alone with both girls.  I'm just tired.

The end of my nursing days

The end of my nursing days are rapidly approaching.  And I'm not as sad about it as I thought I would be.

When I was pumping for Claire I hated to quit.  I felt terribly guilty when I stopped pumping, even though I pumped for a year, and had enough milk in storage to get her through her first 18 months on breast milk.   Pumping was something I could do for Claire since she never nursed.

With Bridget, nursing was so easy at first.  We fit well together, I had plenty of milk, and we had a great routine established by the time I started back to work a few months later.  Up until January, when Claire started preschool, I was able to nurse Bridget at least once during the day on my lunch hour, and our nursing was going wonderfully.

Then preschool started, and my lunch hour is now consumed by moving Claire from preschool to daycare.  When Bridget started sleeping (mostly) though the night, our middle of the night, and usually morning, nursing sessions disappeared as well.  These days, I may nurse her once a day with my work schedule, and what was our nursing time is now spent with my pump. With the decease in nursing my supply has really suffered. In addition, Bridget prefers her cup over her bottle or nursing (unless she's tired), and so it's almost time to be done.

While I will miss the closeness, the quiet time of nursing, I'm okay with being done since she's okay with being (mostly) done too.

Jinxed (A biting update)

I've had a few people ask how things were going with Claire and her biting.  I really wanted to do an update and brag on Claire.  She was at 2 months (2 months!!!!) without any bites at school (home is a whole other story), but I hesitated.  It seems like every time I think about the biting, or I talk about biting, it starts back up again, so I held off.

And yesterday and today we've had problems with biting at school.

I feel like I jinxed her.

I know that's not the case, but this is frustrating.  She was doing so well.  Her speech has been coming along wonderfully, and she's still learning new signs.  She LOVES school and daycare, and all of her friends.  I really hoped that all of her new signs and words were giving her the tools she needed to deal with her frustrations.

I just hate these set backs because it brings the biting back to front and center.  The other kids start talking about how Claire bites them, and I think all the talk of biting makes it even more likely that it will happen again.  I hate to have her singled out for her behavior, but it is understandable.  The biting HURTS, and the kids remember it for quite a while.

It looks like this round of behavior was brought on by a cold.  Claire's behavior has always been very closely tied to how she feels.  Her last few problems were right before we got her tubes put in.  I hope this cold is short lived and that she is feeling back to herself soon though!

The End of a Phrase

Not in your mouth.

There were days that I said that phrase countless times.  I would drive myself crazy saying the same words over and over again.

Not in your mouth.

And then I woke up this morning, and for some reason, the words popped into my head.

Not in your mouth.

I realized that I honestly can't remember the last time I've said those words to Claire.  The words still pass from my lips, but they are directed, infrequently, at Bridget.

Not in your mouth.

No big breakthrough here in getting through a challenging behavior, just a quick reminder to myself that Claire is constantly changing and growing, and we will get through the hard times.

Happy Birthday Claire!

Yesterday was Claire's birthday.

Three. 

How did my little 5 lb baby get to be a three year old?!?

This birthday more than the other two have had me looking back, reflecting a bit.  Her NICU stay, OHS, EI, preschool.  So many changes...she made me a mother.  So many changes recently, with EI ending preschool beginning.

Anyway, on to the fun stuff...the party!

We kept things fairly low key yesterday.  Family, friends, burgers and cupcakes.  Low key though was about 20 people, half of them kids!  Our little house was full (and loud!), but it was a great day, and Claire had so much fun playing with her friends and cousins.

An early present because she just *couldn't wait* until after lunch!

Squeaky shoes.  What was I thinking?!?

Mimi and Bridget  :)

Cousins!

Another First: Preschool!

Monday was supposed to be Claire's first day at preschool, but the bug she's been fighting since Christmas came back in the form of a fever Saturday night, and her first day got pushed back.  She spent Monday and Tuesday home with Mimi, and Wednesday turned into her first day of school!

We met her teachers in a home visit a week prior, and had their pictures up on the fridge.  We've been practicing their names every time we walk into the kitchen and have flipped through her transition photo book countless times.

Wednesday morning my mom kept Bridget so that I could take Claire to school.  After two days with Mimi she wasn't thrilled to leave Mimi behind, but she was excited to see friends.  When she's not at day care (school) or preschool (tree school) she's constantly asking for friends.

When we walked into the school Wednesday morning the director was waiting for us to walk Claire to her classroom.  We got to be the first ones in the classroom that morning.  Claire walked in, but didn't get much past the doorway before she just stopped and took everything in.  We moved out of the doorway and watched a few other kids and parents come in.  Claire then took her teacher's hand and they walked off to get her name tag and wash her hands.  I watched for a few minutes, then waved goodbye and slipped out the door.

Her first day was GREAT!  The only "issue" they had was hand washing....she wouldn't finish and let the other kids have a turn.  She had quite a line of kids behind her waiting for their turn, so now they are singing the ABCs, and when the song is over Claire has to be done.

She was a little tired when she got home, and fell asleep a bit earlier for nap than usual yesterday, but she couldn't wait to go back to school this morning.  She had another great drop off today.  She found her name tag without any help this morning, and was happily waiting to wash her hands when I left!