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.