To Blog Again?

I've been tossing around the idea of restarting this old dusty blog.  It feels like so much happens in our lives that I can't possibly ever keep track of or remember all of the stuff I'll want to look back on one day.  So it would mostly be for my nostalgic self, but out of curiosity, is anyone still here?  I also want to see how many spam comments I get, and if I think I'll be able to deal with them.  That was big part of stopping.  Those are incredibly annoying.

There are so many updates, I don't even know where to start, it will likely one story at a time.  I don't think I've even blogged since our family of 4 became 5!  Now that's almost criminal.  Ugh. This guy.  He's outstanding writing material, let me tell you.  So shoot me a comment if you're still here!

Just Another Manic Monday

As I put on my pajamas tonight I realized they were muddy from my early morning rescue.

As I do every morning, I checked my email on my phone before even getting out of bed. It's a well known fact around our house that once anyone sets foot out of their bedroom, Chelsea will pop out of bed like the little fire cracker she is, and there's no going back. To bed that is. Finally I couldn't hold it anymore and I snuck out of hiding. This time when I peeked in on her though, she was gone!

Her predictable pattern in the morning is: Calliou on TiVo, a glass of almond milk, and raspberry yogurt (without a spoon). You can imagine my surprise when I realized there was no trace of her in the house. As I peered around the corner, I immediately noticed the back door wide open. For that moment sheer panic ran through my mind. How much of a head start did she get on me? And do I have time to put a bra on?

The answers were not much, and no.

As I peered out the door, I saw 3 heads peeking out our backyard neighbors' window. Yep, they were all staring at Chelsea, who was standing in their backyard, barefoot, in her nightgown. Then of course their attention turned to me, the bra-less woman traipsing through the backyard in her pajamas trying to rescue her confused little child.

"Chelsea?! What are you doing?"

"I ask Bea play."

"No! Bea can't play, its too early in the morning. How did you get here?"

She looks around a little confused, "gate."

Thankful to have found her in one piece, I reached my arms out to my little princess & carefully picked her up over the fence & embraced her tightly. Muddy feet and all!

No Surprises?

Today they told me ...

Do you know how many times I could title my entries this way? Too many to count.

Today they told me my baby has Down syndrome.
Today they told me she has cancer.
Today they told me he has ADHD. and ODD.
Today they told me she has hearing loss.
Today they told me she has apraxia.
Today they told me she needs a hearing aid.
Today they told me she doesn't.
Today they told me she either has a tic disorder or is having seizures.
Today they told me it's a tic disorder.
Today they told me he needs a full evaluation.


And the list actually goes on and on, but you get the picture.

You would think by now, nothing would surprise me. You see I could have told you most of those things before they were diagnosed. But not this time. Really, you'll never believe what they told me today.

Today,



they told me,



she needs glasses.

Holy makeral, I don't think they understand. I came here to have her clogged tear duct evaluated. I didn't ask for an eye exam. My child can see perfectly. She's a beginning reader. She can write. She can climb anything and everything.

Then Dr. H asked me if I had noticed any changes in her eyes.

Well, just the constant watering and eye boogers.

Oh, and her tic disorder seems to worsen when she's visually stimulated.

And she does sit pretty close to the TV.

Come to think about it, when we read together she holds the book way too close for me to read it ...

Oh yeah, we did note at her spring IEP meeting that she is on the same reading level in May that she was on in January. Hmmmm.

When I say it all together like that, it really starts to sound pretty bad.

Crap.

So here's the scoop. Miss Chelsea will be getting fancy new specs this summer. She doesn't have to wear them all the time. Wearing them all the time will not fix the problem and not wearing them will not make it worse. He had a big diagnosis for her eye problem but at the time he was rattling that off I think I was picking my chin up off the floor. He did say a lot of families decide it's easier to have the child wear them all the time instead of trying to fight them to wear them when needed, like when they're reading.

I am taking suggestions now, on how to keep glasses on an active 6 year old. I'm also wondering how in the world we're going to afford them. I can't imagine she'll be able to keep the same pair for a few years like her Dad does. So how does one afford to replace kids glasses every time they're broke and or lost? I did see a pair of indestructible glasses, but let's be honest, as Grandma says, they look like safety goggles. No really, they're cute on the little kids, but she's a bit older now and I think she needs a more mature look. Let's just hope she's mature in her handling of them ;)

As for the clogged tear duct ... that's exactly what it is. We will schedule a surgery soon and they will put a tiny tube in the tear duct to create a space. A space that is supposed to be there, but obviously isn't, hence the constant wet face. The tube will not immediately resolve the problem, but when it is removed after 6-10 weeks, she will have a space in her tear duct for her tears to drain. He did mention some kids pull them out themselves (ouch!) and if that happens, well then it happens. It sounds like a pretty low risk procedure and it will definitely help her with some hygiene issues. The wetness on her face attracts an unbelievable amount of dirt and it's almost impossible to keep clean. The tears are also one of the first things other kids notice at school. More so than the speech question, I get asked, "why does she always have tears in her eyes?" The constant moisture in that area also leaves her prone to eye infections and the breaking down of the skin, so we're really hoping she fits into the 85% of kids that have success with this procedure!

Potty Training

Wow, hard to believe it's been a year since we potty trained Chelsea!!!  Those days of diapers are a thing of the past, I never realized how easy it would be once I decided I was ready to really do this thing.  Yes, it was a hard week, that's no lie, but soooo worth it.  If you're a parent of a child with Down syndrome, or any other child your struggling to potty train, the best advice I can give you is plan ahead.  Make sure you really have the time to dedicate to doing this, and don't mess around.  Don't plan anything important, get your other kids out of the house for the week - hello grandma & grandpa!  I wrote this last summer days after she was trained.  I can happily report that within a month of day training, she trained herself over night.  We kept pull ups on for a couple of months then decided it was pointless because she was always dry!  I'm so proud of her, she RARELY has accidents (3 total throughout her Kindergarten year and they were all just tiny pee accidents while on the playground.  Can't blame a girl for not wanting to waste recess in the bathroom!)  She both poops and pees in the toilet and just goes when she needs to - no prompting necessary anymore.  We're not so good at the wiping part, it's more of an inconvenience to her than it's worth, but isn't that the truth with many 'typical' kids?  I'd also love to cure her of the strong and sudden urge to go to the bathroom EVERY time we sit down to eat at a restaurant.

So here it is.  Here is what finally worked for us at 5 1/2 years old. 

I wrote this last summer days after she was trained.

So after 3 1/2 years of working on it, here's what finally WORKED for us ;)

* I devoted an entire week to it. I knew we weren't going to get anything done during that week, there was nowhere we HAD to go (except her tball game, which we did go to on day 3) I also did it when big brother was going to be at summer camp all day for 2 weeks. This was all premeditated. Potty training was actually the reason he went to camp!
 
* Use consistent language - toilet, that's it, nothing else. Then pee and poop. Also underwear - not undies, panties, scivvies (how do you spell that anyways?!) ;) choose one word for each thing and be consistent.
 
* On the first day I removed everything from the bathroom so there were no distractions - EVERYTHING but the toilet, toilet paper and the bathroom sink! I'm not sure it was necessary, but it did motivate me to paint my bathroom by day 3 :) Then on that first day I gave her lots of juice w/ her breakfast and sent her to the bathroom by herself and told her she could come out when she went pee and poop. Surprisingly she did this within 3-4 minutes, so we got to move on with the day quickly ;) After this I reminded her - "don't pee or poop in your underwear." We didn't worry about flushing or washing hands that first week. Gross, maybe, but they'll live.
 
* We went on with our day, playing games, puzzles, watching Calliou, playing outside ... and each time she had an accident (and there were plenty), we had to STOP what we were doing and I would facilitate HER cleaning herself up. After changing and putting her wet/dirty clothes in the washing machine to soak, she could NOT go back to the activity she was doing when she had the accident. If you take anything from our experience, this would be the most important thing. I did have to remind her, or ask if she needed to go quite a bit that first week. I would always let her decide, then if she said no, I would remind her, "okay, but if you pee in your underwear, no more ... (TV, games etc.)" Now days if I have to tell her that, she'll think about it, and sometimes she will jump up and run to the bathroom.
 
* The second part of this concept applies to outings. When we're in public, if she pees or poops in her underwear ... we go home. Seems harsh, but THIS IS WHAT WORKED! The idea is, if mommy or daddy pee or poop in our pants, we would have to go home and change. You may be tempted to take a change of clothes in your bag or car. Don't. Seriously. On day 3 she peed at her tball game and it almost killed me to take her home - but I DIDN'T have a change of clothes, so we did go home and this was a turning point for her. As she had to go home from outings she really started getting it. (I did put a towel in my car to line the car seat if I ever needed to on the way home.) I'd say the worst was when she pooped at brother's ball game. She was playing on the playground and it had come out her underwear and was all down her leg and she had it on her hands. Oh my gosh, it was awful!!! Don't tell, but I didn't even put her in the car seat - we weren't far from home - so she buckled in and I rolled the window down and off we went. It was funny b/c she was flipping off all the cars on the way home - it just happened to be her middle finger that was covered in poop.
 
* I also had to do lots of prompting while we sat in the bathroom together - finish, or go a little more. Before all of this she didn't get that at all and would just go a little bit throughout the day, she never fully emptied her bladder - but now, it's not even an issue. I'm just so shocked at how quickly and how well she has gotten it. She's smart, and she doesn't want to miss out on whatever is going on. In fact it pisses her off, and she figured it out quickly that I wasn't messing around.
 
* Now days, I don't remind her very often, she'll just go on her own like my son did at 5! Her biggest problem is watching TV. Since we're packing and moving, I've been letting them watch more TV and she'll zone out on it and she's pooped in her underwear quite a few times this past week. She's also got some bowel issues anyways - constipation, which causes her to have those little tiny poop balls (TMI ;) I know she's uncomfortable and always has been pooping on the toilet and that's okay. We just keep a close eye on her and don't let her watch TV unsupervised if she hasn't pooped that day ;)
 
All of this is adapted from the "Murphey Method" - Bridgett Murphey is the former president of the KCDSG and presents her method at various conferences. I tried it like she presented it for about 6 hours - but I had to adapt it to work for us. She said no reminders, and tells you to do night training at the same time. I knew that wouldn't work as Chelsea hadn't ever woken up dry. Never. But, now that she's daytime trained, she's waking up dry, so she's worn underwear to bed the past 3 nights and she's been fine! Chelsea just needed to figure out how to get control over those muscles and I had to motivate her to do so. I love this method b/c I'm not motivating her w/ food or bribery or anything. It's plain and simple, NATURAL consequences - I love it. You pee or poop in your underwear? ... we'll have to go home, and YOU clean it up. 


The Murphey Method also suggests buying all white underwear, no princess' or spiderman, just white.  I searched for days for white underwear, but unfortunately, my child was already 5 years old, and weighed 45 lbs.  Try finding white underwear for big kids.  Not so easy.  I did buy some boy underwear, but they didn't fit her body well so by day 2 we were into Ariel and Cinderella.  Didn't phase her at all.  If you can't find the white underwear, use what you've got, don't stress out about it like I did!
 
I don't want to sugar coat it. There are times we're leaving and she hasn't peed for 3 hours and I know it's a long car ride so I'll make her go in there against her will. She doesn't care when she poops while watching TV, so that's always fun getting her to clean herself up. And yes, I do leave a chucks under her bed sheet for extra safety at nap and bedtime. Whatever you do, stick to it. Plan ahead of time, make sure you don't have a lot going on anytime soon (like a vacation or long car ride ;) You can do it!!!
Oh yeah, and I did teach her how to squat outside about day 5. It's summertime and call me lazy, but sometimes it's just easier to go out there ;) A few days ago we caught her trying to pull her drawers down on the back deck ... I guess I should have clarified that we only squat in the grass, hehe.


                                            
                                          Love buying super cute undies these days! 

Spread the Word

There is a word that ties my stomach in knots every time I hear it, and I hear it often.  Each time, I have to make a decision.  Do I say something, or ignore it and act as if I didn't hear that person completely disrespect my daughter?  The word retarded, or retard, is used so casually, most people don't even realize how incredibly hurtful it is.  My daughter has Down syndrome and according to medical professionals, is mentally retarded (although the term MR has recently changed to ID, intellectually disabled).  Each time I hear the R-word it's like somebody is taking a cheap shot at her.  Some of the uncomfortable scenario's I've been in: 

* Years ago, when one of my daughter's physical therapists couldn't get a toy to work, she shook it, and then checked the batteries only to realize it wasn't turned on.  "Oh, I'm so retarded today," she said right in front of this sweet child with an intellectual disability.  AND her parents.

Retarded means you didn’t have the common sense to check the on/off switch?

More like you didn’t have the common sense to sensor your degrading vocabulary in front of one of the many children with disabilities you WORK with every day.

* I am a teacher and upon starting at a new school I overheard a tenured teacher (just finishing her master's degree in education administration) talking to a novice teacher about their upcoming mentor meeting.  "I don't know why we have to go to those meetings, they're so retarded."  This was said right after school, in the hallway amongst a number of young, impressionable children.  If it’s okay for our teacher to say it, then it must be okay for her 4^th graders to use it too, right?

Retarded is something unwanted, something terrible you don’t want to do or be a part of?

What’s so unwanted or terrible about this?

Uh, nothing.

* On crazy hair day, I commented on another teachers’ crazy hair.  I admired her creativity.  She smiled and said, “oh gosh, but I feel like I look so retarded.” 

Retarded means bad, awful, ugly?  What does retarded look like?

Because I think it’s exquisite beauty.

* Once, a Kindergarten teacher told the special education teacher at my previous building, "don't give me any more of your students, I have enough 'tards' this year.”

The above statement is pretty plain and simple, this person is working in the wrong field.  If it were up to me, this person would have been hauled off to jail and charged with a hate-crime by her words alone.  I can’t even explain how difficult it was to see her face every single day. Her words cut like a knife.

Is this how teachers typically talk?  No.  But when they do, I find it particularly appalling.  I am at my 3rd school since Chelsea was born, and finally I feel at peace.  I am at a safe place.  A place where we are all unique.  And that's okay.  A place where respect truly means respect.

These are just a handful of the numerous times I've been faced with the question, do I speak up or let it go?  I can't count the times the Walmart cashier has let it slide, or a relative let it slip on Christmas, or a parent at a school function.  You would think I'd be good at speaking up, but it just never gets easier. 

And when I do speak up in these situations, I get the typical excuses,

"I wasn't talking about your daughter." 

"I didn't mean it like that."

Okay, but you said it.  And it's hurtful.  

Then I let my darling girl flash them a big smile if she's with me.  If not, I pull out a picture of this precious little girl.  I explain all the reasons she is NOT unwanted, or terrible, and how clearly she is NOT bad, awful, or ugly.  

She is perfect.

It’s time to stop.  Now.

If you haven't already, take the pledge.  Spread the word to end the word.  3-7-12