Christmas Program

Last night was Claire's daycare Christmas Program.  The kids had been practicing their songs and motions for weeks.  While I wasn't sure what songs they were singing, I knew she'd learned the motions...when we would sing songs at home she would start doing things that really didn't go with Wheels on the Bus!

We were running late (as usual) and when we got to the program location it was *packed*. There were at least a hundred people there with parents, grandparents and siblings.  All of the kids were lining up behind a screen so they could all walk out together.  Morning drop-offs have been going well, but I wasn't sure how Claire would do with all of the people there.

I shouldn't have worried.  She took her teacher's hand and went off to line up with her friends.

Since we were late we were standing in a back corner.  I knew it was going to be hard to see any of the kids, and was hoping for just a glimpse of Claire.  When she came in, she lined up on our side, right in front.  I was able to sneak up the side and kneel in front to see her.

(I had my crappy camera with me, so the pictures are terrible, but they are also too cute not to share)

She made it through a few minutes of the jingle bells song before she wandered off to start shaking hands with the people in the front row.

She bounced back and forth between her classmates, the front row of parents and me (once she spotted me on the edge of the room), but I was so proud of her!

This was the best picture of the girls, but Darren was being grumpy, so he got cropped!

The IEP

Last week was the first of many IEP meetings we will have for Claire in the years to come.  While not really excited about it, I wasn't dreading it either.  Our district preschool is inclusive, and the teacher Claire was placed with had a student with Down syndrome in her class for the last two years.  While every child is different, it's so nice that J (Claire's teacher) is at least familiar with Ds.

Since many of the providers haven't met Claire, I prepared a packet with some additional info on her, how she communicates, and her likes and dislikes.  It also included some general info on Down syndrome and some communication strategies.  The packet I used also included a spot for a photo, which I love as it helps remind everyone that all of this is for *Claire*.

Claire's services in school will be 30 minutes a week each of ST, OT and sign language support.

After the IEP meeting we walked through Claire's classroom to make sure that all places in it were accessible to her, and picked out her cubby.  There is a little person in Claire's class so we were easily able to find a chair and coat hook that will fit her!

Today we finish her behavior support plan, next week is her home visit with her teachers, and the week after that she starts school!

Toddler Bed Transition

It was time to do it.  It had been for a while actually, but I kept putting it off.  Claire's bed time routine was so easy and perfect that I hated to do anything that might have messed it up.  We would have dinner, a bath, a little football to wind down...and then we would head down stairs.  A book or two, a kiss and we'd lay Claire in her crib, say goodnight and walk out the door.

Easy.  No tears, no drama.

There was a possibility we might be moving (we aren't now), and once that excuse was gone, I no longer had a reason *not* to put Claire in her toddler bed.

We were home this weekend, and it seemed like as good a time as any to give this toddler bed thing a try.  Claire fell asleep for her nap, and we laid her in the bed to sleep.  No problems, but she didn't actually fall asleep in the bed.

Saturday night was her first night in the bed.  I decided that if we had an awful night of sleep at least we didn't have anything that had to happen on Sunday.  We ran through our normal routine, except we sat in Claire's new room for her book.  Darren laid her in bed, covered her up, kissed her, walked out of the room....

....and nothing.

No crying or fussing.  No getting up.  She fell asleep without even moving.

I kind of thought it was a fluke.  It couldn't really be this easy, could it?

The next two nights I took her to bed, and once again, no problems.  I had to flop her around once so that she wasn't hanging of the bed before I went to sleep, but that was it.

Last night was a little rougher.  Not the getting to sleep, but the middle of the night.  She woke up fussing, and I let her work it out a bit before I went down stairs.  I sat with her for a few minutes, then told her to go back to sleep, and she did.  A couple of hours later she was fussing again, and this time I found her on the floor next to the bed.  I helped her back in bed, got her covered, and she went back to sleep.

This morning I never heard her, so I went down to check and as soon as I turned on the light in the hallway she sat up in bed and said Hi Mommy!  She has a gate on her doorway (I didn't want her to try to go upstairs if she was half asleep), but she doesn't even get up from bed in the mornings.

She's done so wonderfully with the change that it makes me wonder what I was even worried about!

Annnnd we're back....

Hopefully.

(and with a super long post)

This last few weeks (months?) have been so busy, both at work and at home, that I've had a hard time keeping up.  And as far behind as I was, it was just easier to take a break for a while.

So, what have you missed?

Sleep Study:
At the end of September (see how far behind I am??) Claire had her sleep study.  She sleeps like a log for a couple of hours, but then flip flops the rest of the night.  Some mornings she is just tired, and we wondered if her lack of good sleep was playing into the behavior challenges we've been having.  Unfortunately (fortunately?), the sleep study didn't give us too many answers.  She doesn't have obstructive apnea (from her tonsils), but some incidences of central apnea were noted.  The doctor said that if he counted them all, it would be significant, but that he thinks they were over-scored??  So, we are having her results looked at by the Down syndrome clinic in a couple of weeks, and we should know more then.

Claire did great getting hooked up with all the wires and fell asleep pretty quickly.  We waited until she was out before adding the nasal canula.  In typical Clairey fashion, she woke up about 4 am (earlier than usual), and wouldn't go back to sleep, so we had to end the test early as she kept pulling the wires off with all her tossing and turning.

The first picture and the second video were taken so she could see herself in my phone, and she was hamming it up for herself.  :)

Sleep Study 1 from Melissa Moos on Vimeo.


Sleep Study 2 from Melissa Moos on Vimeo.

PEP Conference:
PEP is a conference put on by the Colorado Department of Education, and it is the only conference of its kind in the country.  It is put on by parents, for parents, but providers and educators can also attend.  It covers all kids of disabilities and all ages of children.  Topics presented on include the grief cycle, IEPs, and disability and the law.  The program is funded by the Department of Education and the hotel room and most meals are provided.  If you are in Colorado, I strongly recommend you consider attending.  It's an empowering weekend, and well worth the time.

Lots of antibiotics:
My mom and Bridget went to the PEP Conference with me as Bridget had a bit of a bug right before we left.  The day after we got back from PEP, Bridget still had a low grade fever, and she also had a rash show up on her back  So off to the doctors we went, where the verdict was strep.  This was followed by a call to my mom (who also didn't feel well), and she had strep too.  We figured Claire was next, so I got her into the doctor that afternoon too.  Claire may or may not have had strep, but she had fluid in her ear, so she went on antibiotics too.  A couple of days later it was my turn to call the doctor and take him up on his offer for a prescription too!

Pumpkins:

Halloween:
Our church does a carnival every year with games and bounce houses.  Since Claire really isn't into candy, this was a better choice that traditional trick-or-treating.  The girls looked adorable, but I never got any good pictures of them in their costumes this year, just a few snapped at the church.  Claire *loved* the huge slide and went down many times by herself and with Darren.

Preschool Assessment:
I was so nervous for Claire's preschool assessment. I wanted her to do good, to show all of these people her awesome skills, but I just wasn't sure how she would do.  You get Claire on a good day, and she will show off and charm everyone.  If it's a bad day you will feel the force of her tantrum.  Luckily, the assessment fell on a good day.

Of course, she didn't cooperate on *everything*, but I was awfully impressed by her.  She wouldn't point to the baby's eyes or nose, but she stacked blocks and sorted items correctly into containers, and showed off some of her words and signs.  I got a copy of her assessment last week as we prepare for her IEP (in 3 weeks), and I think it showed a pretty fair representation of her skills.  Some things aren't checked that she obviously knows (like action words...eating, sleeping), but I'm good with the results we got.

Tubes are Scheduled:
Claire has had fluid in her ears, and been on antibiotics, twice in the last couple of months. About ten days after she finishes her antibiotics her ears and sinuses fill back up with gunk. She's been congested and uncomfortable so we decided that it's time to put her tubes back in.  She'll have her neck x-rays done a couple of days before the tubes just to make sure all is well there, and when the tubes are done she'll have an ABR done at the same time just to be sure her hearing is good.

Whew!  I think that covers the highlights anyways.  :)

Book Review: Bloom by Kelle Hampton

A few weeks after Claire was born a birth story starting showing up on the internet.  It was the beautiful story of a birth, followed by the unexpected news that the baby had Down syndrome.  We were nearly certain Claire had Down syndrome so the news wasn't a shock to us like it was for the Hampton's, but the raw emotion in the post resonated with me, and I couldn't help but cry when I read it.  Even now, nearly three years later, my eyes prick with tears when I reread the post.

This birth story was my introduction to Kelle Hampton and her blog, Enjoying the Small Things.  Kelle had been blogging long before Nella's arrival, but that birth story introduced her blog to a whole new set of fans.  Because our girls were nearly the same age, and because Kelle seemed to be *the* Down syndrome blogger to keep up with, I started following along.

After reading her blog for a while I discovered Kelle and I are so very different.  Her world is (seemingly) filled with perfectly dressed kids, extravagant parties, beautifully staged photos and I often left her blog feeling a bit defeated.  She seemed to have it all together, and I was lucky to have time to do the dishes and take a shower.

Because I felt so far removed from her way of life I didn't read her memoir, Bloom, for quite a while. (I actually had to check it out from the library three times.  It kept expiring because I never made time to read it, even though it is a fast read.)  If you've read Kelle's blog, expect more of the same from her book.  If you are new to her...there are stories about her amazing group of friends and all their crazy times together, beer handed out liberally, and lots of dudes, bad asses and hot messes.

My main criticism of the book is that it's not particularly well written.  There are quite a few times I had to remind myself that this was a grown women, a mother, telling her story and not a high school student.  Parts of the book were incredibly juvenile, as if Kelle was mainly concerned about still being the cool kid, even though she now has this not quite perfect daughter.  I wanted the raw emotion that came through in Nella's birth story, and I just didn't have the same connection to Bloom.

Where Bloom shines is with the photographs.  Kelle is incredibly talented, her girls are beautiful and that helps Bloom appeal to people without children with disabilities.  People can easily glance through the photos and see that Kelle's life, and ours too, really isn't that different from anyone else's.

Recommended? Yes and no.  There are many, many people in the Down syndrome community who have read and fallen in love with this book.  Many seem to connect with the emotion in it, but I wasn't one of them.  I would read a sentence here and there are think YES!! I remember feeling that way.  But I wanted those moments of connection throughout the entire book, and I just didn't have that.

I think Kelle has managed to take away some of the fear surrounding Down syndrome with her photography, book and blog, and I appreciate that. Read this book for the photos.  As with any memoir, remember that this is Kelle's experience, not mine.

Do you say something...or let it go?

Wednesday was Claire's first (short) day back at daycare after being sick.  I dropped her off after OT and planned on picking her up before the kids laid down for their naps.  When I arrived to get her the kids were all outside playing.  Everyone was running around having a great time, the teacher was up near the building with a couple of kids, and Claire was sitting in her swing.

Just sitting there, alone.

I really like everyone at Claire's new daycare.  They put this swing in just for her, and I was 99% sure that she was being pushed in the swing, then a situation came up that the teacher needed to address, and she stepped away.  It happens.  I know that.  Claire was not in any danger, and was not going to get hurt.  She was not upset.  She was just sitting there.

But, she looked so little and so alone sitting there.  And my heart broke a bit.

The teacher could tell that I was upset when I walked up.  She asked what was wrong, and I just shook my head.  I needed some time to decide what I wanted to say about the situation.

I know that having Claire contained at times is great. For example, she's sat in the car (with the doors open) for a minute while I hauled grocery bags inside.  But I needed to make sure that this wasn't going become a common occurrence.

This morning I pulled this director aside when I dropped Claire off.  I explained that driving up and seeing Claire stuck in her swing and ignored was not a good feeling.  I asked that if the teacher needed to step away from her that she take a few seconds, if possible, and take her out of the swing.  Apparently the teacher guessed that Claire stuck in her swing was what was bothering me.  She explained the teacher stepped away because other kids were throwing rocks.  I believer her.  I know things come up.

But at the same time, I had to say something.  I had to make sure Claire was being properly taken care of.

Today I'm reminding myself that I'm not that mom.  Even though I feel like it, I'm not super critical or nit-picky   I am simply concerned about my daughter. And right now I am her voice.

Mean Mom

While I never officially committed to the 31 for 21 Challenge, I *thought* this might be the year I would actually complete it....and then Claire got sick.  At first it was just a cough and a runny nose, then a bigger cough, more congestion, 4 days of fever and an ear infection.  We spent days just snuggled up on the couch.  She finally felt well enough to go to daycare for a few hours yesterday, but that little bug meant I didn't get on the computer for days.  Oh well, there's always next year, right?

I stayed home with Claire on Monday, and Darren was home with her Tuesday. Tuesday was her doctor appointment, which is not a job that Darren is used to doing.  I had to make sure he knew which door to go in, when the appointment was, and to remind him which pharmacy we used.  Even with all of those reminders he called me mid morning because he'd already forgotten what time the appointment was.

I dropped Claire's antibiotics by the house while she was napping so that we could get them in her once she woke up.  She'd been resisting when I'd given her motrin for the past couple of days, so I knew the antibiotics were going to be a battle too.  Not long after she woke up I got a call from Darren.  He said that he'd tried to give her the antibiotics, but she wouldn't take them....

Enter Mean Mom.

I'll spare you the details, but the antibiotics are going down, and she is finally feeling better.  Today is her first full day back at daycare, and I hope she does well.  She's still been pretty worn out by the end of the day.

Step Up for Down Syndrome

Last weekend was the Step Up for Down Syndrome walk. This is an annual fundraiser for our local Down syndrome association. The walk hosted more than 4,000 participants and raised over $280,0000! In addition to benefiting a very worthy cause, the walk is just fun. Teams set up tents, and friends (either new or old) are never far away.

Claire started out riding in the stroller, but it didn't last long.  Miss independent insisted on walking the entire mile.

Bridget didn't last long.  :)

Halfway through the walk with Mimi and Grandma.

Claire wasn't happy with just walking....running was her speed.  (which is what Darren is signing)

Crossing the finish line

Cousins  :)

Our Team

Thank you so much to everyone who supported Claire, whether in person, by walking virtually, or with a donation!

Remembering the hair....

A little Claire photo flashback today.....

3 months old

People First Language

"Just because she's a Downs we don't just ignore the issue."

This statement was made to me by Claire's doctor as we were following up on her liver issues last month.  See the problem with it?? 

Claire is not a Downs.  She is not a Down syndrome child.  She is not Downsy. She is not high or low functioning.  

She is Claire.

First and foremost she is a feisty, independent, funny, and loving two year old.  She adores her sister and taking care of her babies.  Cheese and veggie straws remain at the top of her favorite foods list.  If it was up to Claire, Signing Time would be on the TV all the time at our house.  She rarely sits down to watch anymore, but loves having Rachel as background noise.  Claire can't get enough of talking on the phone, especially to Grandma.  

That is Claire.  No mention of Down syndrome is needed to tell you about the awesomeness that oozes out of her.

Think of it in another way....would you ever call someone cancer man, or diabetes woman instead of using their name?  I doubt it.  If you wouldn't use those words to describe someone else, please don't do it to Claire. While it may seem like a silly request to some, it all comes down to respect.  Claire deserves respect just like everyone else.

If you define Claire by Down syndrome alone, you miss out on *her*.   

Down Syndrome Awareness Month

When many people think of October and awareness they think pink.  We love seeing pink all over supporting breast cancer awareness, but for us, October also means blue and yellow.

If you have any questions about Claire, Down syndrome, what therapies we participate it, school or anything else you can think of, please ask.  In addition to any questions, I'll also be sharing some facts on Down syndrome and hopefully dispelling some myths as well.

She made it a week....

So I should have written this post last week, but just didn't feel like it because I was bummed out.

I knew that I was probably being naive thinking a new daycare would just instantly fix all the biting...and it didn't.  She made it a week.  Three bites last week  Two on one day, one a couple of days later.  Two were squabbles over toys, the other one was a "big" kid helping too much.  I get it.  She was frustrated.

But I feel so bad that I haven't found the "thing" that teaches her this isn't okay.  Usually, I feel like I know her so well, and now I just feel like I'm missing something...

Drop offs in the morning are a bit rough too, and we're both struggling with that.  I can literally count the number of times she cried in the mornings going to her other daycare, and now the mornings are filled with lots of tears.  When I pick her up in the afternoon she is great, just playing away, but I really hate leaving her crying every morning.

I know this is a big change and she's still adjusting, but *ugh* I really hope things even out before we have to introduce preschool in a couple of months...

Cheyenne Mountain Zoo and Buddy Walk

Two weekends ago was the first of the two Down syndrome walks we do every year.  We've met so  many friends around Colorado Springs that we drive down there every year for the Buddy Walk and to visit them.

This was the first year that Darren was able to join us for the walk so we headed down and day early and went to the Cheyenne Mountain Zoo.  Even though I've lived in Colorado my entire life, I'd never been to the zoo, and taking the girls was good excuse to go.  The weather was perfect, and the zoo was fairly empty so we gave in to Claire and let her out of the stroller.  She was pretty much uninterested in the animals, but she had a great time walking around the zoo for over two hours.

Claire did stop and pet the wallabys too, but I couldn't get a good picture.

I loved this big guy.  He sat in the window and hooted.  Claire couldn't get enough of him.

This baby was only a few months old.

This giraffe wasn't nearly that close to Claire's hair.  She was being a bit of a drama queen.

Nursing momma.  :)

Bridget loved our new stroller and I did too!  It fits both girls great and fits through doorways. 

Before we left we went to say goodbye to the giraffes and give them a little treat.  I wasn't sure what Claire would think of them getting so close to her, but she loved it.  Each time we ran out of lettuce she signed more.  After the third bunch of lettuce we called it quits and went to find dinner.

I'd kind of forgotten it was Friday night, and the restaurant was slower than I would have liked.  Claire was hungry, but by the time food came she was so crabby all she would eat was fries.  We piled everybody back into the car and drove to the motel with two very tired girls crying all the way.  Claire took a quick bath, and since I knew she was exhausted I figured she would lay down and go to sleep easily.  I was soooo wrong.  She tossed and turned and talked for over an hour.

The next morning we got up and headed to the Buddy Walk.  We met up with old friends and got to meet some online friends in person for the first time!  The weather was wonderful for the walk.  The last couple of years have been HOT and this time it was warm, but still comfortable.

After the walk we met another friend and her kids at a park to run some of Claire's energy out of her.  Our girls are only about a week apart in age and it had been two years since we seen them last.  The girls had so much fun playing together and I wish we lived closer!

We ended our very busy weekend with a photo shoot with Erin.  I shared some of Bridget's six month photos already, but wanted to include a few more of Claire too!

Half a Year {All about B}

Today is Bridget's half birthday.  She is changing so fast.  Two weeks ago her tricks pretty much included rolling over.  Now she is sitting on her own, starting to get her knees under her and she has 4(!!!) teeth coming in.

Even with the mega teething, she has been just as sweet as ever, though she hasn't been eating quite as well as usual.  Not that I can blame her.  Her mouth has got to be a bit sore.  We've started a few solid foods, but we are pretty much in the exploring stage, not the eating stage.  I'm still so in love with nursing, and am glad to have that quiet time with Bridget.  Unfortunately, it brings out some crabby behavior in Claire, and I'm trying to help her feel included too.

Bridget is still getting up at least once a night.  Once a night is doable.  Two or three times really starts to wear on me the next day.  Claire will move to her big girl bed next week (eek!!) and the crib will be available, but I don't see Bridget moving down stairs any time soon.  I'm not willing to do stairs in the middle of the night to feed her.

I love to watch the sister bond develop between my girls.  They adore each other.  Claire loves to entertain Bridget by dancing around and acting silly.  Bridget will just laugh and laugh, which she hardly does for anyone else.

All of these awesome pictures were taken by my friend Erin. If you are in the Colorado Springs area, get in touch with her. Trust me, you want her to take some photos for you!