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:

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.

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!

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.  :)

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!