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.

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.  :)

My child is a biter

You know those little slips the preschools and daycare centers send home?  The papers that say your child had a good day, or got a scraped knee.  Some parents get slips saying their child has been bitten by another child.  I imagine you are upset and sad.  I know I would be.

I am the parent on the other side of those slips.  The one whose child is doing the biting, and I'm upset, sad and frustrated too.  For both of our kids.

We have been dealing with Claire's biting for around eight months now, but really, it seems like forever.

Claire bites for a variety of reasons.  When she is really frustrated and mad, it's easy to see a bite coming.  While it's still not okay, I understand these bites.  She has something to say and she doesn't have the words to communicate effectively.  Sometimes she bites out of jealousy.  Bridget is particularly vulnerable while she's nursing.  Sometimes I have no idea why she bites.  She'll be playing with or kissing on Bridget, and somehow they turn into bites.

Some of the issues at daycare are toy issues (which I think are standard toddler squabbles) and others are space issues.  Claire doesn't like to be crowded, and will put her hands up, push at the others kids and say no.  Unfortunately, a lot of the kids in the day care room right now are 18 months and younger.  Even though Claire is communicating with them, they aren't listening.  And when they don't listen, she bites.  We are changing daycare centers in a little over a week and I'm praying the change will help.  Claire will be one of the youngest kids there, and I hope that the older kids will be more receptive when she does communicate with them.

Something needs to change because when Claire bites, she bites HARD.  She's broken the skin before, and bruises are common.  Right now Bridget has a scrape down the bridge of her nose, a full set of teeth marks on her thigh and I have a bruise on my shoulder.  This needs to stop, but I'm really at a loss as to what to try next.

We've tried so many things already.  Time out.  Extra chewing on her chewy tube.  Vibrating teethers. Telling her how much biting hurts.  Ignoring small bites and redirecting.  Books about biting.  Praise for correct behavior when there is no sign of biting.

I refuse to bite her back.  She already has some self-harming behaviors.  Head banging is the behavior of choice right now, but she will bite herself.  And even if she wasn't self-harming, I still have issues with biting a child.

I'm frustrated.  I can't leave the girls alone for even a second because Claire will hurt Bridget.  I know that kids are forgiving when they are young, but there will come a time when Claire's friends won't forgive her for biting them, and this needs to stop long before then.  I just don't know what else to try.