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.


Not a Perfect Mom said...

I am loving the new design! Minx did mine too, she's so awesome to work with...

Tricia said...

I ha-ha-ha-ha-heart You!

Lacia said...

Love the new blog design!! AWESOME!

Oh, and the high-functioning/low-functioning thing, I hate that reference. It sounds so...robotic. My daughter is human, not a machine.

Lisa said...

Great post! Love the new blog look, too!

Wendy P said...

Really great post, C. You rock.

Michelle Z said...

Reading this makes me miss you so much! Come back to WI, okay?!

Anonymous said...

Just a Mom surfing the net with a question. Thank you for you time, energy & effort. My curiosity has been put to rest. I will share if the opportunity presents itself. Thanks again :-)