Thursday, March 31, 2011

More on Spreading the Word

Tim Shriver, Chairman and CEO of Special Olympics, was on The Colbert Report yesterday, asking Stephen Colbert to lead an anti-R-word campaign.

Check out the interview here.

It was funny to me, but I get it. I wonder if people that aren't emotionally invested already came away with the intended purpose.

A great quote from the interview:

"I didn't say you cannot use the [r] word: I don't want to be a cop; I want to be a teacher. You're allowed to be humiliating, degrading, and hurtful. I'm allowed to petition you to at least recognize what you...say and be aware of the option you have to stop...I'm asking you awareness for a forgotten population."

Many thanks to the friend that brought this to my attention. Good looking out!

Tuesday, March 29, 2011

Easy Peasy

Ok, so Patricia Heaton, the actress, has vowed to donate $1 for every new Twitter follower of Reece's Rainbow up to $10,000.

Forget the politics, if you can, and click the button to help save the lives of some wonderful kids. Every dollar counts.

If you're not on Twitter, it's a very simple sign-up. If you need help or have questions, let me know.

Reece's Rainbow: @reecesrainbow

If this message inspires you to sign up and you just can't get enough of me (gag), I'm on there as ctevia.

Wednesday, March 23, 2011

Clutch the Pearls!

Something good just happened.

Something unexpected and so appreciated.

I called a preschool, a close one, like, right down the street from my house, and I had my defenses up, expecting to be expected to sell them on my kid (which I refuse to do) and fight the familiar fight and the lady was all, "Oh, so are her delays documented?"

Me: Very much so.

Her: Let me check in with my Regional Director and I'll call you right back. I think I have some ideas that could work.

(We had been discussing the whole toileting conundrum and how that seems to be forcing Playette with much younger children, if she's even allowed to register at all.)

A whopping two minutes later, she called back.

No, really. She called back.

Somehow I missed her call, so she left a message.

And she said something like, "We don't see any reason why she can't come here. Please call me. We can put her in with three-year-olds, no problem, and keep working with toileting. I just want to talk some more. There may be times that we need help with understanding some things [about Ds]."

That's it.

Normally, a pretty anticlimactic story, right?

But, unfortunately, not in my world.

This woman was kind, helpful, and articulate.


So now, backwards as it may be, we can finally go visit the school.

Because there was no way I was going to visit a place that would not even consider admitting my daughter.

This roundabout stuff is for the birds, but good things can and do happen sometimes and that's what I'm choosing to celebrate today.

Of course, in the back of my mind I keep hearing, "Now, watch it be a dump."

Monday, March 21, 2011


Today is World Down Syndrome Day. It's a time to acknowledge all the folks out there sporting the 21st chromosome in triplicate, like Playette.

One of my goals with this blog is to increase positive awareness so that my daughter and all of her friends and all of those that have come before and after her experience just a little bit more understanding of their place in this world.

Because they do have a place.


And, just because, here's my post from 3/21/2009.

Wednesday, March 16, 2011

Pretty In Pink

Thank you to all who shared their thoughts on the new digs!

I must say that I absolutely love the new layout. It goes perfectly with the vision that I had for a blog update. While I loved my fish (the previous layout was a perfect match to Playette's nursery), it just felt like time for a change. It seemed like perfect timing since I also wanted to debut a new name for this space.

I came up with "One More, More Than One" after writing a very heartfelt first post as a letter to friends and family. I knew I needed to call the site something, but what? I wasn't really in the mindset to be clever, so I went with wordy instead. Still, though, it had a lot of personal meaning for me.

But just as Playette has not stayed that little one-year-old, the blog must, too, evolve.

While (still) fighting the battle to lose weight, I saw this phrase everywhere I turned.

Infomercials for stuff that makes you schweaty: *Results Not Typical

Reality Shows where people lose more in one week than I do in 6 months: *Results Not Typical

Rail Thin Jennifer Hudson: *Results Not Typical

It just made me think...

My life: *Results Not Typical

And I'm ok with that.

So here we are.

If you're interested in working with the very talented Minx, go check out her site. If she can help me? The very non-creative person that I am? I'm sure you're golden.


I'm so grateful for you all. Believe that.

Tuesday, March 15, 2011

FAQ: The things you may have wondered and many have asked...

How old were you when you got pregnant/gave birth to Playette?

I was 30, just two weeks shy of 31 when she was born.

Has Playette had any health issues?

Some things here and there, but nothing serious. She's been a pretty healthy kid and we're very grateful for that. To date, she hasn't had any surgeries. While we've had more doctors appointments than some kids her age, mostly they've just been to follow the Ds protocol (check on this, make sure of that, etc.). While she does have a congenital heart defect (a small ASD), everything is fine right now. She's also been cleared by Endocrinology (previously, she took 25mg of Synthroid daily for hypothyroidism).

We began to thicken her liquids in late 2009 after finding out that she silently aspirates via a swallow study.

When did she walk?

She was 20 months old and was motivated by Cheerios during a PT appointment. I never expected it to happen that early and she hasn't stopped moving since.

When did she get her first tooth?

Late. As a matter of fact, the first one popped through just before she started walking. She's still missing a couple of obvious ones in the bottom front.

Flippers, anyone?

Did you all participate in Early Intervention?

Yes. Playette started PT at about six weeks old and had it weekly until she was 5 months and we moved away. After that, we had PT, OT, Speech, and Aqua therapies on a really random schedule. Sometimes it was a lot, others it was hardly anything. It was all about trying to get as much as possible in the beginning and then once we realized that we needed to strike a balance, it tapered off.

I wish I would have spent more time enjoying my baby though. That I do know. You don't get that time back.

What has been your experience with childcare?

Playette was home with me until she was 7 months old. Since she has no siblings, I went through a lot of emotions regarding whether I was going to be able to do enough for her (poor New Mama me) so when the opportunity opened up to have her in daycare, we went for it, hoping for good peer models. It worked well for us and I went back to working full-time soon thereafter.

When we left California, Playette started half-day Pre-K and is now home with me for the rest of the day. It's not our ideal situation, but it will have to do until something better presents itself. Our goal is for her to be included with her peers.

Did you use sign language with her?

Absolutely! Still do. We started at about 9-10 months (too bad I didn't blog back then so I could confirm) and it took her a while to use her first sign meaningfully. I'm glad we didn't give up because now she uses ASL so much to bridge the communication gap and she knows way more signs than we do. We estimate that she knows about 300. It could be more but she knows more than we do so it's hard to say. We swear by Signing Time.

I'd love for Playette to be an interpreter some day. Time will tell whether or not she wants that for herself.

Why didn't you blog the first year of her life?

Frankly, I was a mess. It took me a while to come to grips with Playette's diagnosis. Those first few months were a scary time. I didn't even tell many people at first. I just didn't know how. I had read that people take their cues from you so I didn't want them to have pity on me, which is what I thought would happen if I burst into tears while delivering the news.

So, with that in mind, I stayed quiet pretty much until her first birthday. The blog was my way of squelching the fear and providing some disclosure. It's been a therapeutic process.

But how could you have been upset? Didn't you know that all people with Down syndrome are special angels only given to special parents?

I've heard that. A lot. But I prefer to think of my child as an individual with strengths and needs like anyone else. Receiving her diagnosis did not make me happy as it was, at the time, made to seem like the worst thing that could ever happen in a pregnancy. I know now that is not true. Far from it.

Still, she's a kid that I adore and drives me batty on a regular basis. She's special to me, but not special-special.

Was she diagnosed prenatally?

No. The on-call Pediatrician informed us of his suspicions that she had Down syndrome about 12 hours after she was born.

But she doesn't look like she has it. Are you sure?

Yes. We're very sure. With our permission, blood was taken from our newborn daughter and a karyotype was done. The diagnosis of Trisomy 21, regular old random Down syndrome, was confirmed several days later. Playette has 47 chromosomes, one extra 21st in every cell of her body (we assume), just like 95% of people with Down syndrome.

What about the other 5%?

They either have translocation (two 21st chromosomes plus extra chromosome 21 genes attached to another chromosome) or mosaic Ds (additional genes from chromosome 21 exist only in a portion of the body's cells).

But what about prenatal testing...shouldn't you have known she would have Down syndrome?

I was a nervous first-time mom with access to the internet and lots of time on my hands. Since I never imagined that getting pregnant would just happen for me based on my own health issues, I was convinced from the get-go that something was amiss. I was told over and over (very irresponsibly, I might add) that I was young and nothing in our family history would make it likely that our child would be born with any issues.

With that in mind, plus the fact that the tests that were available at the time were fraught with false positive and false negative results, I abstained.

In the end, I'm glad I didn't know. I think the timing of the news is just the way it needs to happen for each family.

You must be thrilled that she's so high-functioning!

I don't tend to think of her like that. I think that a lot of people just don't understand Down syndrome and the wealth of potential that the people that have it posses. So when they see someone, my child for example, doing things that other children their age do, they're shocked.

Unfortunately, the treatment of people with Down syndrome has not always led to them being able to live their best lives. For many years, people with Intellectual Disabilities were put into categories: trainable or educable. You had to be at a certain "level" to even be given the opportunity to learn.

So, yeah, I get it. People don't know. That's part of the reason why this blog is here. So that we can help to show how the stereotypes and reality differ.

And since I don't go around saying that BD, for example, is more high-functioning than I am because he has an understanding certain math concepts that I don't possess, I won't make those types of of comparisons to my daughter's intellect.

Has having Playette limited what you do as a family?

Not at all. I mean, there are definitely things that are more difficult, but those are moreso related to dealing with ignorance and having to fight for equal rights. Previous generations did that for me, so it's not a foreign concept.

But when you look at our day-to-day lives, we're just an average family. Or something. I don't know what the average family does, but I figure we're close enough.

At the age of 3, Playette has already been to 14 states and Washington, DC. She has experienced both Disneyland and Disney World. She's visited Mexico twice and Costa Rica.

Having her hasn't slowed us down one bit.

(And just to have it all in one place for my future reference, the states are MD, VA, GA, AZ, CA, NV, KS, NY, DE, HI, TX, FL, WI, and PA. Too bad I won't let an extra long layover in IL - where Playette and I met Smokey Robinson - count. We'll just have to go back.)

Why do you move around? Doesn't that make it harder on you regarding schools and building a community?

BD is in the Navy. We go where he's sent, for the most part. It is more difficult, but we're not the first to go through it and we won't be the last. Thankfully, there are lots of other helpful military families out there and we support one another as much as possible. And the people that live inside my computer can go wherever we go.

Also, there are bonuses. Like no co-pays.

I'm nervous about meeting other families who have a loved one with Down syndrome. How do you know so many people?

I've reached out. I wasn't always like this. I used to be nervous, too. That whole first year? You couldn't have paid me to go to a conference or a Buddy Walk or even a playdate. Now, I relish it. Being around people that "get it" is like nothing else for me. I don't have to teach or explain. We can simply BE. I've made lots of friends from all over the world.

So, jump over to some blogs and read along, join your local parent support group and participate. It may be just what you've been looking for.

But, if you're not the social type, that's ok, too. You'll find something that fits your lifestyle.

Why does the word r*tard(ed) bother you? It's not personal.

It is to me. When used as slang terminology, it is never in a positive way. Typically, it's the butt of a joke and always has a negative connotation. MR is part of my daughter's medical diagnosis so every time the stereotype is perpetuated that she is less-than, it hurts my heart. I also cringe when I hear "special" or "short bus" jokes because it's the same principle.

Why do you go by nicknames?
I love the interweb and all, but it just makes me feel better.

Saturday, March 12, 2011


Coming soon.

Don't be scurred, ok?

The Great Race to Nowhere

That's kinda how I'm thinking of potty training/toilet learning. Whatever it is you want to call it, the bottom line is all the same: The lack of need for expensive incontinence products.

Wait. Unfortunately, that's not it. That would be too easy. What I've learned is that not only do you get the pride/bragging rights that your kid can pee or poop in a pot, but a completely whole new world is opened to them.

Did you know that? I didn't.

I think it's crappy that my kid is not able to join a class at school or get involved in a rec center program or a myriad of other things because she happens to wear a pull-up or, on a great day, panties covered with a bulky plastic overlay.

See, my issue is that if she can count and knows her alphabet in two languages and gets along well with others, WHAT THE FLIPPING FLIP DOES THAT HAVE TO DO WITH WHETHER OR NOT SHE TELLS US SHE HAS TO GO?! WHY DOES SHE NEED TO BE IN A CLASS WITH TWO-YEAR-OLDS?!


Obviously, this is an hot button for me today.

And, trust me, I do get that staffing and money drive all of this. You need more people in a class that has children for whom toileting is an emerging skill. The ratio changes. Smaller ratios cost more money. Blah, blah, blah.

But it feels like another acceptable form of discrimination and lord knows we've got enough of those already. ("Will you accept my child with Down syndrome into your preschool program? No? Oh, alright then." - gag)

If my child is developmentally ready to learn age-appropriate things but she can't control her bladder, she doesn't move on. Basically. And I'm supposed to be ok with that.

This all ties into my last post where maybe it wasn't clear but...I am not fine with how that whole thing went down. But finding other placement for Playette? It's hard, yo. Because of all that stuff I just rambled about. No academics for girls that still tinkle in their dipes.

And that makes me think about this long, long road we've been on.

If you'll let him, BD will tell you all about how he was PT'd in the womb or something close to that. No, seriously, he was using the toilet really early.

So, when Playette was approaching two and he wanted to get her started, I was all, "Why not? We're supposed to treat her just as we would if she didn't have Ds, so if he's all motivated, let's go."

She was successful. And those days success looked like timely release. She knew that sitting on the potty meant it was time to go.

That was almost two years ago and we've gone through a lot of up and down since then. There were several occasions when I thought that she was going to be 100% PT'd any day now, and then I was happy with her being "schedule trained" and then there were others times (like when BD was deployed) when I thought that we were all the way back to square one.

We've tried having multiple Ikea potties stashed all over, a soft, cushy potty, inserts on regular-sized toilets, coloring books with stickers, and even an iPhone app that got her to go in a freaky Pavlovian kinda way.

In retrospect, we're just not as far along in the process as I had hoped we would be two years ago. I really, really wanted to believe back then that my kid was gonna be all Superstar Pee Pee Girl, but what I think I did instead was just stress myself the hell out for way too long about something that could have waited.

Every morning for the past few weeks, I've packed up a grocery bag full of pants, shirts, socks, underwear, and plastic covers. The school said that she was ready to take the next step and I was grateful for the assistance and support.

Every night, I did the laundry that came home. For a while, she was coming back to me in the same outfit she left in and I was getting notes that said things like, "She was dry all day!" That felt like good. Like progress. Like I could really start signing her up for classes at the rec and securing placement in an age-appropriate setting that had zero tolerance for teachers with no people skills.

And then, yesterday, on Friday, I got a letter.

"She is not physically ready," they said. "She is inconsistent in staying dry."

The school is giving up.

I know that I can't do the same. I don't know how to just stop when I know that she's trying, that she's proud of herself when she gets all the stars to align.

But I'd be lying if I said that didn't take the wind out of my sails.

Peeing in the toilet does not dictate how wonderful and capable my daughter is.
Peeing in the toilet does not dictate how wonderful and capable my daughter is.
Peeing in the toilet does not dictate how wonderful and capable my daughter is.
Peeing in the toilet does not dictate how wonderful and capable my daughter is.
Peeing in the toilet does not dictate how wonderful and capable my daughter is.

I'll let that marinate a bit.

Wednesday, March 2, 2011

Oh no - not you, too!

I wrote the following post over a month ago. I've gone back and forth about publishing it.

Something I realized yesterday, though, is that I'm still bothered by what happened. I'm still very hurt when people use the word "retarded" or "TARD" or whatever version they choose that inadvertently hurts people that cannot control their cognitive abilities and the many people that love them.

I'm even more hurt when it's people that I like or admire. And what is the appropriate response when it's a special education preschool teacher that does it?

Oh, God, this fight. Today, and days when I feel like this, which are much fewer and farther between, I wonder if I'm cut out for it, if I'm strong enough.

So on this day, the one set aside to attempt to get people to think more about their word choices, I'm publishing.

And sighing.


The "brief" IEP meeting went well, overall. We were rolling around KeepItQuickVille, making a slight detour onto OhIMeantToAsk Lane, just about to easy into the driveway of Maison de NoSurprises when it happened.

She said it.

I cringe even before writing it out because I know what it is.

Lemme fist tell you this. I know some people want to go all "get a thicker skin" on me and I have to say...somewhere along the way, I have.

I had a friend in high school who called me an Agressive Cottonball. He said that I could dish it with the best of them but I couldn't take it.

I probably pouted when he said that.

Because I'm sensitive.

In case that wasn't clear.

He was right though. When I was coming up, (and forgive me for not knowing the new terminology that surely exists amongst the whippersnappers) jonin' (uh, who knows how to spell that anyway?) was huge. We made fun of each other for fun. Someone noticed that you were wearing your friend's jeans? Having a bad hair day? Sporting ugly glasses past their prime?

All easy targets.

But let someone say something about me. I may have put on a semi-tough exterior (i.e. not burst out crying on the spot), but it festered internally for...well, forever.

Obviously. Because all of those things were said about me and I still remember them vividly. Plus a whole lot more.

I would love that brain space back, thankyouverymuch.

The truth is, though, that I'm ok about a lot of things now that I just plain wouldn't have been years ago, whether we're taking 15 years or just the few since Playette has been in my life.

I still strongly believe that you shouldn't hurt people by using words that are painful to them. But I don't have the same reaction that I used to and I'm not sure how to feel about that.

I don't get as sad as I used to. It's not even anger, really. It's more like disappointment. Deep disappointment that I feel the need to shake off as quickly as possible. I can't wallow in it...forever. I refuse to.

You know why? And I think this is sad, too.

I won't do it because, MY GOD, she's three.

It's not stopping.

So, yeah, I'll still stand up for my rights and those of others. I maintain to fight the good fight, but I'm putting a protective coating on this here cottonball personality of mine, little by little, for the sake of my own sanity.

That said, I got disappointed yesterday.

It was in that very IEP meeting.

Right at the end.

I may have even begun to gather my belongings.

We were pulling into the driveway, after all. There had been no surprises, no arguements, no losses of control or emergence of expletives. What more could you ask for?

Well, I could have asked for my daughter's very kind and considerate and generally likeable teacher not to use the "r" word.

Stab me in the gut, why don'tcha.

And, like I said, it wasn't the same kind of pain I've felt before. It was different this time.

It was more of a "Dammit, not you, too. I thought I was safe with you. I didn't have my defenses up because we're supposed to be -->here<--. This is a safe zone. I want to like you. I don't want us to have a barrier between us because, ugh, I have no choice now but to address this."

Unfortunately, it's not something I can ignore.

Especially in a situation like this one.

The old me, trust, would have grabbed my kid (who was in the room by this point), ran out crying, vowing to never have her cross such an oppressive threshold as long as there was breath in my body.

You may think that's extra-dramatic, but I'm telling you, I can see myself starring in that scene as clear as if it had actually happened.


And that's where I stopped writing that day.

I can't take myself back to that exact place, so I feel like I'd be doing a disservice to the person I was that day if I just tacked on how I feel today.

In short, I did stop the teacher that day. She was mid-sentence about something totally different. When she had used the word that offends me so much, what she said was, "I don't know why they have this on the form here. It's so retarded."

I called her on it. Very nicely, but I couldn't let it slide. I mean of all things, she's at work, with a parent, in an IEP meeting. You'd think that at least one of those things would have told her to initiate filter usage.

Her reply was a story about how her dad was in a wheelchair when she was growing up and that other kids used to ask her if he was retarded. So, you know, she gets a pass.

Oh. Ok.

We spoke a couple of days later about an unrelated issue. She used that time to apologize. She said that it had been bothering her and she felt really bad. I elaborated as to why some people find that word offensive.

I have no way of knowing if she got it or not. I'm still bothered. Obviously.

Another reality is that I cried last week. I screamed. I cursed. About this very topic. Not the teacher, but other people I looked at as friends.

They got me.

I'm not as tough as I thought.