Friday, October 31, 2008

In Their Own Words: The Daddy's Perspective

Perspective: BD’s thoughts and Ramblings

Flashback Freaky Friday

Happy Halloween, everybody! Trouble is brewing because on this Freaky Friday Chrystal and I have switched places. So today I’m blogging and she’s watching football…ok she’s probably not watching football, but she should be!

I’m not much of an expressing-my-feelings type person so I’m just going to throw out my random thoughts here on the blogosphere and organize them to give you a little insight to our lives from BD’s side of the fence.

Let’s begin with what it’s like to be me. It’s great - I love my life. I have 2 wonderful girls in my life that I love more than anything (except maybe football). We have fun, but it can also be challenging (see men’s dictionary for definition of father and husband).



Chrystal and I are different in the way we express ourselves. She is very outspoken while I am very inside myself - a silent giant if you will. I’m not inside myself like a great philosopher or anything, but there are times when I’m thinking to myself, challenging myself, fixing things in my head and trying to correct things before they go wrong.

Which brings me to Malea’s diagnosis. When we were given the news I was sad, but at the same time happy. I didn’t know much about Ds, but I knew that there are people with Ds who are doing well in our society. I knew it wasn’t going to be easy and that one of the bigger challenges would be dealing with other people, but I’ve never really been one for caring about what other people thought or did.



I realized a big challenge laid ahead, but I’m a big picture kind of guy, so, although I realized there were going to be a lot of difficult things for our family to overcome due to our daughter’s designer genes, in the grand scheme of things she’s healthy and we can work the rest out as we ride along. Don’t get me wrong, I was bothered, but I learned this motto early in my life that I always try to live by:

Never let anything without a heart beat you!


This motto couldn’t apply to Ds though. I am a person who has always THRIVED on winning. It was hard for me to deal with the diagnosis because I kept looking at it from the perspective of "How do we beat this thing and make it go away?" After lots of thinking (inside myself), I realized that Malea’s diagnosis wasn’t meant to be a challenge to be beaten. Instead, in itself, it presented smaller challenges that would need to be beaten. Once I came to this realization I was relieved and began to thrive again, this time on taking down the challenges that Ds presented. It allowed me to become more focused and that’s a good thing!



Enough about that, let’s talk about the Malea!! She’s awesome. When I wake up in the morning I usually go to get her out of her crib and I can’t wait to see her smile, although that smile usually doesn’t come until after there has been a diaper change and a feeding. We have great conversations where I’m sure she’s telling Chrystal and I all the things we’re doing wrong (good thing we don’t understand baby speak yet) and she makes the best play pal ever. Although half the time I end up wondering how I ended up on the floor…again! Sleepy time is the best though. When she’s lying there in my arms yawning, eye rubbing, and shifting around to get comfy I get all weak. There’s nothing better in the world than watching her sleep in my arms.



My final thoughts, hmmm, well my life is pretty close to perfect. Navy football is doing all right, Texas football is right were I want them to be (Beat TT!!). Oh yeah and I have a wonderful wife whose passion and love for her family motivates me to try and get better every day. She is smart, beautiful and the love of my life. I enjoy running/jogging/walking/standing through life with her. And then there is Malea who is just so damn lovable and fun to watch as she grows up and develops more of her personality. She has fun and continues to show Chrystal and I that it’s all about having fun.



Remember to have fun!

And go scare someone…BOO!



In Their Own Words: Kristi's Perspective

My perspective…

I have known Chrystal since we met in the infirmary at college. I was there for a twisted ankle and Chrystal was there because she didn’t want to run. We bonded after our drill instructors forgot about us for the day. We were a funny pair but I always new I could count on Chrystal for anything even if it was just to listen. She spent our plebe year hearing my stories about how I missed my boyfriend, Ben, and of course “the blind leading the blind” (smile). She listened, sympathized, and even helped prepare care packages to send back home. When I married the guy in 2003, she was also there as a bridesmaid. So she has been there for me. I hope the same is true from my end…

How I learned about Malea aka Teep: I received an adorable picture message on my phone. I saw a gorgeous little girl who looked just fine and a lot like her Momma. The next day I got a mass e-mail that just said there were some medical conditions and the family was dealing with those. This freaked me out as she looked healthy and fine in the picture message. So I called and asked if someone could call me to let me know what was up as I was currently checking flights to DC. Dwight left me a message and said everything was ok and they were home. At that point I stopped worrying and figured Chrystal would call when she had settled into motherhood and had gotten some rest.

A few days later Chrystal called. Prior to going into labor Chrystal and I had talked and I had spent part of the conversation complaining to her about my internship at the local zoo that included scooping elephant poop for free. The day Malea had her first real poop Chrystal thought of me and realized we hadn’t talked yet and that I had no idea what she was going through. It’s kinda funny that poop is how she remembered me.

I still remember the moment that she told me Malea has Ds. I remember just stopping. A long pause on the phone passed between us as I tried to form a thought. I don’t know what I said but I do remember crying. I cried not so much for the condition but for what all this would mean to the three of them and everything I couldn’t protect them from. At some point after the reality settled in it occurred to me how this moment would define Chrystal and I wanted her to know how successful she would be. A few days later I sent Chrystal a card and I hope it was thoughtful and not ignorant.

I was also taking a course in cell biology and each of us had to do a report with power point presentation regarding a genetic condition. I choose Ds and learning more helped me adjust, educate my view, and I also got to include Malea’s birth announcement. I hope I did a good job on the paper and I did receive some comments from classmates who learned from the paper. I believe I have grown because now Ds has touched me on a personal level. Since then I have learned a ton from Chrystal and from Malea. It was fun to get to meet her in August ‘07 as a very itty bitty baby and to see her now in October ’08 at 16 months. She has more of her mother’s personality and you can see her own emerging. It is cool to see.

What do I think about Ds? I don’t really know. I look at her and all I see are possibilities and the future, nothing more. I guess my point is it just “is.” I know none of this will be easy but hopefully with a large enough circle she will have plenty of allies to help her through the tough real world. As far as I am concerned she will receive all the chances and opportunities possible (period).

Here are a few pics from her KS visit. Yipee!











Wednesday, October 29, 2008

In Their Own Words: Fatimah's Perspective

I met Chrystal in high school, but our path crossed again in our early twenties, and it was then that we developed a relationship. I have always admired Chrystal. Her life appeared so perfect. Although I was privy to knowing many of her trials, tribulations, and tragedies, her life still seemed perfect because she bravely handled all of life’s obstacles.

Now, I have the privilege of continuing a relationship with (post family life) Chrystal, and I still think her life is perfect. Sure her life continues to have trials and tribulations, but she is an educated person who has a warm, beautiful, animated and tenacious spirit along with a wonderful husband and a delightful child. When I first heard that Malea had Down syndrome, I felt bad for Chrystal, not because she had a daughter with Ds, but because I knew she deserved the “perfect” life that she coveted. As I sit back and admire her loving family, I see that her life is perfect. She has what she and other women desire. Listening to Chrystal as a friend, as opposed to a parent, gave me more of a hunger to work with children whose needs were not met through mainstream public school.

I am embarrassed to say that being Chrystal’s friend post-Malea, has made me more sensitive to working with and interacting with children who have disabilities. The reason that I am embarrassed is because my own experiences did not motivate me as much as Chrystal’s did. I don’t know if Chrystal remembers, but I had a maternal older sister who had multiple sclerosis and cerebral palsy. I was close to my sister as a child, although she was put into a group home where she would receive the around the clock care that she needed. I remember visiting my sister often. After my parents divorced, and my mother remarried, I saw her less and less. Throughout life, I thought about my sister ever so often, and when I became an adult, I vowed to myself that I would visit her more since I had the means to do so. But tragically, when I was about 25, she died at the age of 33. Yeah, I cried at her funeral, but I don’t know if the empty promises that I made to myself motivated my guilt and my tears, or if I was crying because she had passed or both. Nevertheless, Chrystal was very supportive of me in that process and she offered me kind and encouraging words. Those feelings, along with many others, motivated me to work with students who have disabilities.

Today, I work with children ages 13- 19 who have mental, emotional and social disabilities. I am a therapist in an alternative, separate day school for children who are diagnosed as emotionally disturbed. The students that I work with are sub-diagnosed with mood disorder, schizophrenia, mental retardation, autism, depression, post traumatic stress disorder, etc. It is my job to help students cope with life’s stressors. Often the students’ behavior interferes with them receiving an education. Listening to Chrystal talk about the exceptions that she has for the professionals who work with Malea helps me to understand what the parents of my students need from me. I am blessed to have Chrystal in my life, and I will continue to value her friendship and admire the wife that Dwight desires and the mother that Malea deserves.

In general, Malea’s diagnosis has made me more sensitive to people who have disabilities - physical, emotional and mental. I also make my children aware of how people are uncontrollably different, and that everyone deserves love and acceptance.

If I could write a letter to Malea, it would be short and sweet. Malea, you have two of the best parents any child could ask for. You are loved by many. You were born with a gift, just as everyone is, and your mission in life is to find out how your gift can and will help strengthen you and help other people. I would also want to tell her to laugh everyday and never be afraid to cry.





Tuesday, October 28, 2008

In Their Own Words: Jocelyn's Perspective

First let me introduce myself.

Name: Jocelyn Rice (Banks when I am with my husband)

Relationship to Chrystal: I want to say friend but that word doesn’t do our relationship any justice. After over 20 years, I would say that we are soul mates (Not in a Callie and Hahn Grey’s Anatomy type way, more of a Thelma and Louise, CC and Hillary from Beaches, Gail and Oprah kind of way.)

When Chrystal asked for guest bloggers of course I wanted to do it but what in the heck do you write about. Chrystal has done such a great job coming up with interesting topics; I didn’t want to be the boring guest blogger that messes it all up. I figure I will just write about my thoughts as an observer in this journey that Chrystal, Dwight, and Malea are on and hope that my thoughts come together at the end. Sort of like a stream of consciousness. I bet you never thought you would ever hear that again after high school English.

So when Malea was born, I remember Chrystal telling something me that something wasn’t right. She said that they think Malea had Down syndrome. I could hear all the emotions in her voice. Anyone that knows me knows that I am emotionally crippled. I am the worst person to expect any kind of emotion from or have an emotional reaction in front of. Thinking back, I hope that I was supportive. I hope that I wasn’t the emotional mute that I am capable of being. In my version, I was supportive.

Chrystal and I are a lot alike. We are web junkies. Like her, I ran right to Google. I probably read everything there was to read about Down syndrome. Some good, some not so good. I read all the things you should say and should not say. All the things that you should do and not do. I probably didn’t actually do any work for like a week. In my version, I did and said the right things.

Over the next couple of weeks, I felt so helpless. I live in Philly and at the time Chrystal and Dwight were in DC, so I wasn’t there. I tried my best to call and email but Chrystal was such and emotional wreck (is that too harsh?) that she was hard to catch up with. When I did get her on the phone, the conversation usually ended with her breaking down and me talking to Dwight. I was so angry that I couldn’t be there and be a real friend in-person. I wanted to cuss out all the people that claimed to be her friends and just disappointed to no end. I wanted to call all the family members that were insensitive and selfish in their reactions and give them a piece of my mind. But all I could do was let her know I was there when she needed to talk and get my mom to cook them dinner. In my version, I was a good friend.

Chrystal and Dwight have had some pretty big life changes. They got married, had a baby that just happened to have designer genes and moved across country. I know it wasn’t always easy but I am so proud of the way they have handled everything.

Malea couldn’t have chosen better parents. It is amazing to see her and Dwight together. Not that I have actually witnessed it in person a lot but from Chrystal’s stories and pictures and just hearing the pride in his voice when he talks about her, he is sprung. I am a daddy’s girl and game recognizes game. That girl will have him wrapped around her finger for life.

Malea will always have someone in her corner with her mother. I am so proud of the way Chrystal doesn’t take no for an answer and goes above and beyond to make sure that Malea will have every advantage in life. Not that any mother wouldn’t do that for her child, but anyone that knows Chrystal knows that you don’t want to be on the other side of that wrath. Who knew that she had been honing those stalking skills all these years for a purpose?

Malea has opened my eyes to so many things that I was never aware of. My choice of language, my reaction to other human beings, my tolerance for differences. It’s just amazing how much you walk around in the dark until, well, until someone turns on the light.

Like Chrystal, I worry about Malea’s future. Who will she be? Will she live in a world that celebrates her differences? She is already behind the 8-ball growing up in a world that pre-judges her for her skin color and her gender. I know we have come a long way, but we have such a long way to go. Will she have a great friend like I have in her mother? Will she call Auntie J when her mom is getting on her nerves? (Because we all know I am the cool one ) Will she make the same mistakes we made with boys (over my dead body) But those are the same types of questions I have about my own child. The more I understand Malea’s differences, the more I realize we are all the same.


Jocelyn's son, LD, and Malea size each other up on their first meeting. She's very fortunate to have a "big brother" like him.

Monday, October 27, 2008

Perspective

per⋅spec⋅tive
/pərˈspɛktɪv/
–noun
1. the state of one's ideas, the facts known to one, etc., in having a meaningful interrelationship
2. the faculty of seeing all the relevant data in a meaningful relationship
3. a mental view or prospect

That's what this last week of Down syndrome Awareness Month is all about for me.

Perhaps yours has changed since reading this blog, since your child was diagnosed with Ds, or just in the last year in general.

I was on another blog earlier and the author asked us to share how Down syndrome has touched our lives. That is a question I've asked others, but how do I narrow my own experience down to a brief statement?

I thought about it for a little while and came up with the following:

My daughter has led me to care about things I never knew existed and let go of things that truly don’t matter.


It's very simplistic, but so true. I think this is a common thread that is running through many of us participating in this 31 for 21 challenge. It's inevitable that perspective changes the further you are along in your journey. How I feel today about Ds, and my daughter having it, is so very different from what I felt this same time in 2007. And next year? Different still, I'm sure.

Over the next several days, I'm going to share with you the words of others. You probably get a good idea of how I feel from reading here, but there are so many other people in my daughter's life.

Tomorrow we will begin to hear from some of the people whose hearts she touches.



Sunday, October 26, 2008

The Pumpcat

Oh the Pumpcat. Hee. Mindy reminded me of that whole situation with her most recent comment. I wish that I was home so that I could include a photo, but I promise that I'll share one as soon as I can.

Remember how I said that I wasn't so into Halloween? Well, last year I recall listening when the ladies in my First Time Moms group talked about dressing up their (approximately) 4 month olds. Oh, the costumes were so cute and I so wanted to share their enthusiasm, but I just didn't have it in me.

While all of that was going on, I was experiencing a serious addiction to shopping at Target. BD affectionately called it "robbing" the store. See, there was this amazing coupon floating around for Gerber baby food. It was something like $1 off of 2 and for some reason Target was selling jars for anywhere from 52-57 cents each. So, yeah, 2-7 cents at the register. I didn't know at the time if my baby would ever eat baby food (of course she did and has since moved on to sweet potato pie and barbecue chicken as of her last meal), but it was a great diversion to all of the emotions I was feeling at the time. When BD would come home from work, he would tell me to go. Just go. Somewhere, anywhere, as long as I went. I chose Target. Suffice it to say that we ended up with a yooge, yes yooge, supply of baby food and related items.

I say that just to help illustrate that I was spending a lot of time in Targé Boutique. Have you ever seen those $1 bins at the front of the store? If you haven't, take a look next time. Sometimes there's cool stuff. Like black cotton hats with cat faces painted on them. For babies, even.

Yeah, I bought one. They had pumpkins and cats, but since it was an impulse buy, I limited myself to just one - the black cat hat - cause it was all dangerous and mysterious-like. Oooweeeoooo

And then, when I was at this fantastic community yard sale that I just happened upon while walking one day, I bought the pumpkin pajama-ish thingee for $0.50. I was weak and it was a bargain. What can I say?

When I realized that maybe I did want to dress Playette up a little on Halloween, I went back to the store (actually, several of them) and attempted to smoke out that elusive pumpkin hat. But, no. Not a one was to be found.

Wait. Am I remembering that wrong? Hm. Maybe.

But isn't that the age-old argument? What came first - the pumpkin or the cat?

Regardless...

With a pumpkin outfit and a black cat hat, I thought, "That's ok, 'pumpcat' sounds kinda cool." Say it with me - Pumpcat.

Plus, I was sure she'd be the only one of her kind and we're all about being unique over here.

I shared this with my mama friends on about October 29th. Mindy then volunteered to send me her pumpkin hat since she didn't need it.

But would it arrive from Florida on time?

Dun Dun Dunnnnn!

On October 31st, I had to take Playette to the Opthomologist. The mail arrived just before we left. Huzzah! The pumpkin hat.

But what about my beloved Pumpcat? I couldn't just leave it behind without another thought, could I?

The ending to the story is not all that complicated really, and I hope it's not too much of a letdown. Who am I kidding? Of course it is.

I took photos of her with both hats and then took her out in public with the pumpkin hat. Hey, I was a new mom. I didn't want people to think I was totally wacko. As it was, the Ped had already made a note in Playette's medical record about me being unstable.

Now that? Oh, that is a much more interesting story for another day, but I still love my Pumpcat.

Thanks for the reminder, Mindy!

Saturday, October 25, 2008

Excused Absence

Dear Blog,

Please excuse your author, Crittle's, absence today. She is taking some time off to partake in a family reuinion outside of Phoenix, AZ (otherwise known as "Let's All Eat A Lot, Watch Football, and Look at Playette! Day"). Tomorrow, she will attend the wedding of her husband's friend. It will be a double wedding, so there should be twice as many interesting things going on. I hope that she can write a post about the event upon her return and submit that as make-up work.

Thank you, in advance, for your consideration in this matter.


Sincerely,

Parent of Crittle


[Heh. I wrote this using the same format I used when I would skip class in high school. I had my mother's signature down pat!

Uh, that was wrong of course. So very, very wrong. Stay in school, kids!]



Flashback Friday: Costumes

Yeah, Playette hates them, but I can't resist. I'm not big into Halloween so thus far the costumes have come from a community yard sale and a friend. Maybe one day I'll be bitten by the celebration bug. Who knows.

I would have waited until next week to post this, but I have something else in mind already for that day.

October 31, 2007





October 18, 2008
Our neighbors had a party. "Ghosts on the Coast" they called it. Cute, huh?






Killer view from the party.


Playette checking out the view.


Peapod checking out the view.


Oh! Because it made me laugh, here's a joke:

A man is walking home alone late one foggy Halloween night, when behind him he hears:

BUMP...


BUMP...


BUMP...



Walking faster, he looks back and through the fog he makes out the image of an upright casket banging its way down the middle of the street toward him.


BUMP...


BUMP...



BUMP...



Terrified, the man begins to run toward his home, the casket bouncing quickly behind him.



FASTER...


FASTER...



BUMP...



BUMP...



BUMP....


He runs up to his door, fumbles with his keys, opens the door, rushes in, slams and locks the door behind him. However, the casket crashes through his door, with the lid of the casket clapping.


clappity-BUMP ...


clappity-BUMP...


clappity-BUMP...


on his heels, as the terrified man runs.


Rushing upstairs to the bathroom, he locks himself in. His heart is pounding; his head is reeling; his breath is coming in sobbing gasps.


With a loud CRASH the casket breaks down the door.




Bumping and clapping toward him.




The man screams and reaches for something, anything, but all he can find is a bottle of cough syrup! Desperate, he throws the cough syrup at the casket...


and,





(hopefully you're ready for this)









The coffin stops.





HAPPY HALLOWEEN!



Thursday, October 23, 2008

Lather, Rinse, Repeat

I'm traveling again today. OKC to LAX to home. I'll get back in time to take Playette to PT, which is nice because more often than not BD takes her. We do it like that because he's done with class early and I'm still at workat that time of day . We went together last week, which we don't get to do as often as I like.

The PT is great. She's fun. I just hope Playette is getting what she needs in the midst of all of our socializing.

I'll go in to the office on Friday. Why? Eh, I'm still not sure. It's not like I don't have enough hours of work in. Maybe I'll take my time getting there and catch up on some of the rest I've been missing. I already know that I'll leave early because I have an appointment to get my hair done. I want to try something new with it before I go through with the big chop that I know is coming soon.

I finally officially dumped the old ST yesterday. It's about time. BD was going to take Playette to start with a new ST on Friday, but I think we've earned a little break and will hold off on that for a couple of weeks.

We're heading to Phoenix on Saturday morning. The wedding we're attending is on Sunday and we come back home on Monday. It would be a great opportunity to catch up with family and friends, but...

There's just not enough hours in the day, it seems.

When I think about the fact that we'll leave Phoenix on Monday as our little family unit and then Playette and I will return to that very airport less than 24 hours later as we pass through on our way to Kansas City, I can already feel the fatigue.

I have a hard enough time as it is getting myself and all of my work stuff from place to place, so when your add a little one and all of her gear? Gah.

But we'll have fun in Kansas though. Kristi is really excited about keeping us entertained. I'm glad to not have to leave Playette behind again next week and I can only imagine how BD is going to spend his free time. It'll be good for him to have that. XBox, TiVo, ESPN 24-7. Am I close?

And then, after all of that, it will be over. Life as we knew it in September will return, just in time for November.




Wednesday, October 22, 2008

Self-Advocates, Blog Watching, etc.

I love this video that highlights Karen Gaffney's accomplishments.

I am also inspired by Michael Jurogue Johnson and admire his work. Can't you just imagine his depiction of Playette? One day!

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For those out there that are new to the blogosphere, I'd like to introduce you to a tool that really helps me keep up with the 25 blogs that I read regularly.

Before Tricia told me about Google Reader, I was struggling!

You do need a Google login, but not necessarily a Gmail account. If you have a profile here, it should be the same.

On the Google homepage, at the top, select "more"

Near the bottom of that drop-down list, select "Reader"

If you're logged in, you should see a green bar in the left sidebar of the page that says "Add subscription"

Click the link and either type of past the blog you'd like to follow.

You'll then be able to see whenever a blog to which you've subscribed is updated.

Perhaps even easier, you can opt to go to the very bottom of this page and, under the word "Subscribe", select "Posts" and then "Add to Google"

There are other options out there, but unless this is the first post of mine that you're reading, you know that this is pretty exceptional for me when it comes to sharing technical info.

If you're a fellow blogger, you can always choose to "Follow" but you probably know more about that than I do!

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I know, I know, not all that exciting, but I'm so super tired. It'll get better. I promise.



Tuesday, October 21, 2008

Another Day, Another State

Well, sorta. I'm still in OK and will be until Thursday, but that the first title that came to mind.

I like it here. The room is super cute, the bed is comfy, and I'm not 100% paranoid that I'm going to catch something by walking around barefoot. Plus, it's warm outside and you know what that does to me. And did you know that Sonic HQ is here? Yup, it is. I found it while walking around yesterday. They're ready for people like me. The receptionist gave me a beer Fried Ice Cream Blast cozy just for stopping by and looking like a dork. I recommended that they offer a tour of the facilities. He absolutely did not write down that note and forward it on to upper management.

[I can't upload my camera photos, so see if this works. Should be a link to uploads I've made from my camera to Facebook over the last year or so.]

I really should be out enjoying the city, but I am still so tired from all this gallvanting back and forth across the country. I'm due to present at Oklahoma State University this afternoon and it's a nice long drive from here so I better get moving.

The original plan was to get up, go work out (I even made sure to get a room close to the facilities), walk across the street and tour the Botanical Gardens, and then leave, but no.

I did get up though, so good on me for that.

Last night, I met up with my friend Kara who I went to college with and haven't seen in years. [There's a photo of me like this floating around somewhere that tells a little about the last time we got together in New Orleans.] We chatted while dining at TK's. (Did I just sound like a local or what?) and it was really nice to see her. We'll get together again. It's so much nicer to have someone you know around while in an unfamiliar place.

(Hey, that's actually relative to this whole blogging thing. See numbers 3 and 5.)

Time to go handle some business.

And just so BD doesn't think I'm a complete traitor - HOOK 'EM!



Monday, October 20, 2008

Why?

Honestly, I don't do this because I think I'm the best writer. I don't think I'm going to look up one day and be famous. I'm actually surprised when people let me know that they come here and read. All I have to go on are comments and those are usually from a faithful few.

So why do I do it?

For several reasons, really.

1. To vent. Selfish, yes, but I haven't lost my mind yet, so this must be helping.

2. To share photos/videos/updates with friends and family that live far away. (Yes, it makes me sad that most of them don't still don't visit the site and probably won't ever see this sentence.)

3. To enlighten, by dispelling myths and stereotypes, those that would otherwise have no idea about lives touched by Down syndrome.

4. To help lift the weight of fear from those that newly do.

5. To share in the sense of community that exists online in a way that is not accessible to me in real life.

6. To be an example of what a Black family that includes a child with Ds can look like. When I was looking 16 months ago, I couldn't find one. *waving* Hellloooo!

7. To play my part in moving this effort of awareness forward.

As you may recall, last week I posted a list of books/resources that I purchased in the initial effort to learn more about my daughter's diagnosis.

Since then, out of those that remained untouched, I have read one and started to read (then ended up skimming) another. [I've also found even more, but that's for another time.]

Whoa. I really was just buying anything and everything back then, y'all.

I say that because while the info in Differences in Common is good for the most part, it was published nearly twenty years ago. What the author was doing was groundbreaking back then, I'm sure. For people that wanted needed, desperately to feel that they weren't alone in this journey, I'm sure every word was devoured. I did like it in general, but then every once in a while, I'd be hit by something that just turned me off.

Again, that was twenty years ago. A lot, thankfully, has changed.

I'm not just talking terminology.

(Though the author seemed to feel that People First Language was not all it was hyped up to be, I'd still never turn down a chance to chat with her and see what she thinks now. Oh! I just found an article she wrote this year. Maybe there's hope for that convo.)

On the plane this morning, I pulled Our Special Child out of my carry-on bag. I read Foreword and the Preface, the Introduction and the first seven chapters even. But then I couldn't continue at that pace any longer. That's when I began to skim. And skim I did up until the plane touched down in Oklahoma City, all the way to page 286.

When I mentioned "awareness" in #7 above, I did so because I truly feel that the more that Ds is treated as commonplace, the better. In this book, Ds was called (in love, I'm sure) a "disease" - people thought they could catch it. There was much discussion in the beginning of the book about whether or not to place your child in an institution and, if you chose to do so, how to select one.

And what about EMR versus TMR? Know what that is? It's "educable mentally retarded" and "trainable mentally retarded," respectively.

*breathe*

In my parents' generation, children with Ds were determined to be TMR by default and, as such, unteachable based on their diagnosis alone. That's it and that's all. No one would teach them to read because they would never learn, thus children never learned because they weren't taught.

[Ahem. Wanna get your world rocked? Check out the 9 minute mark.]

Please don't get me wrong. I'm not bashing the authors. You see this was common, sought-out information not that long ago. The advances this community has made are due to people demanding respect - nah, simple consideration - for their family members, friends, and, in the case of self-advocates, themselves.

The more we know, the more we can do to make a difference. If one person that knows me reads this blog and raises a child a little differently because of it? Great. If someone is shown a new perspective and greets someone they never would have before? Fantastic. It's all about being aware. You don't know what you don't know. Tell a friend.

By the way, did you see Shawndi's comment from yesterday? Did your jaw drop like mine did? Doesn't her bright, beautiful daughter deserve a more thoughtful society, as do all of our kids?

We still have a long way to go.

We all can do better.

And that's why I'm here.



Sunday, October 19, 2008

On the Road Again

Playette is 1 year and 4 months old today!

Tomorrow, I'm heading to Oklahoma City. I have a lot to do today in preparation - not only for the trip itself, but for leaving my family again for several days.

Easter Seals is hosting a pumpkin patch event, so after I go grocery shopping and before I go in to work to restock my supply of promotional items, we'll go to that. BTW, Playette HATES her costume, which I find hilarious. I know, I'm wrong.

There's not much time to spare and I'm having one of those days where maybe it's best that I don't go on a typing tirade, so here's some good info that I found on the Families Exploring Down Syndrome (FEDS, gotta love that) web site. (It's a parent support group in Michigan)

This actually relates to something I will be sharing with you all in a little while...I hope this is helpful to someone in the meantime.


Tips for Family and Friends
[relative to a new Ds dx]

Grandmas and Grandpas, Aunts and Uncles, and Friends:

You may not be aware that what you say and do, at this critical time, could be totally wrong. Here are a few "Dos" and "Don'ts" that parents of children with Down syndrome suggest that we share.

Some of the "Don'ts":

The well-meaning statements on this list can and do anger new parents, and even those who have been parenting for a while.

* Saying "I'm sorry" or relating any other form of pity.
Pity is not what new parents want or need. What they need is love and acceptance of their new baby. [Generally, anything that alludes to the idea that the parents just gave birth to anything other than a newborn human being? Not good. Yeah, I went through that. -- cts]

* "God gives special parents special children" or any variation.
The new parents probably don't feel very special right now. Some parents may be a little angry with God. Trying to make them feel better with words like these might be appreciated by some parents but not by others. It is best to avoid saying this.

* "They're such loving children."
This is a stereotype of children with Down syndrome and demonstrates that you really don't know much about Down syndrome.

* "There is a special place in heaven for people like you."
The new parent wasn't anticipating a special place in heaven with this birthing experience; the new parent wanted a "normal, healthy newborn". The special-place-in-heaven statement might evoke a response good for neither you nor for the new parent.

* "Do they know how serious it is?" or any variation.
Again, this is a demonstration of a lack of knowledge about Down syndrome. Some parents may be angry and want to reply with, "How serious is it? Well, every single cell in his body has an extra chromosome... is that serious enough?"

* "You are handling this better than I could."
This is an invitation for the new parents to say something like, "No, you would be wonderful." Suddenly, the conversation has focused on you instead of on the parents and their new baby. Plus, you really DON'T know how the new parents are handling it. Do you?

* "He doesn't LOOK like he has Down Syndrome."
Down syndrome is not just a look, it is a chromosomal abnormality. The baby looks like a baby, but the extra chromosomes are still there. [This also infers that the parent did not take any necessary steps for confirmation. Trust me, I hear this a lot - we are sure and have it documented. -- cts]

* "Maybe the doctor is wrong."
This demonstrates a lack of knowledge about Down syndrome and genetics.

* "Maybe he just has a little Down syndrome."
Yes, just like being "a little pregnant."

* "At your age, didn't they think this could happen?". "Why didn't the doctor know?" "Didn't you have the test?"
None of these questions need to be discussed. Just because this child was born with Down syndrome does not mean the baby is inferior or a mistake. This is their new baby who was born with an extra chromosome. The baby was born with Down syndrome not because of anything anyone did. Making these statements and asking these questions is hurtful, a hurting best prevented by learning about Down syndrome from up-to-date publications.

Do say:

These are feel-good statements and actions which are usually well accepted and which all new parents would welcome.

* "Congratulations."
They just had a baby! What better response to show that you love them and their baby than to extend congratulations. "It made us feel like 'normal' parents when someone said that to us." If the hospital allows it, a bottle of champagne could be greatly appreciated. [I loved the cookies and flowers we received. It made me feel better. -- cts]

* "He/She looks just like you."
The baby probably does look like someone in the family. All of the baby's genes are from the family. "My son looked exactly like my daughter did when she was just born."

* Friends and family who actually 'do' something such as read about the disability (or find information on the web!)
This thoughtfulness really means something to the new parents. It shows love and concern for the baby. "The day after we told Megan's Aunt about Megan having Down syndrome, she came to visit us with a book and with articles dealing with Down syndrome which she had found on the web. That showed us that she really cared."

* Offer to baby-sit.
It is a fear of the new parents that their family will not accept the new baby. By saying something like, "Well, when are you going to let me baby-sit?", you are showing the new parents that you want to be a part of the baby's life. This will be a great relief to them.

* "We will always be here to help."
Another very good way to show that you intend to be a part of their lives. [Meals are a great idea. We were so consumed that I'm pretty sure that there was no chewing going on in our house for that first week. -- cts]

* "He/She will do fine."
The new parents are probably pretty worried. They might not know much about Down syndrome, and they may be concerned about possible medical problems. Your having a positive attitude will rub off on them. They don't need pessimism or negativity from their loved ones. Even professionals who are not up-to-date on Down syndrome issues can give off a hurtful negative attitude. You need to be the positive and informed person who will offer support and acceptance.

* "We'll all learn from him/her."
This is another good way to show that you intend to be a positive part of their lives. After all, how can you learn from their new baby, if you are ashamed of him/her? Their new child will give everyone involved an opportunity to learn about love, acceptance, and respect for persons with disabilities.

Saturday, October 18, 2008

Finding Graceland

Somewhere in the mass of clutter that continues to get moved from house to house, there is a small, black-and-white printout of the United States. On that paper, several states are highlighted - I think in blue - to indicate those that I've visited.

My goal is to see them all. Sooner than later, preferably. I think I'm just over halfway to my goal. I thought I would have the chance to check some off my list while driving from Virginia to California, but, well, Playette and I opted out of 80% or more of that road trip when we took a plane to Arizona.

I don't count states that I've flown over or only know through an airport stop. No, I have to have done something. Something I can remember.

All that to say, this is part of the reason why I'm traveling to the states that I am for work: I've never been to the majority of them. Driven through when I moved from Texas to the DC area as a child? Sure. But, like I said, that doesn't count when it comes to my map and I'm all about the map.

Last week's trip to Arkansas was absolutely highlight-worthy. I was in two cities, had a great tour of the countryside (driving by all of the cotton fields brought up feelings of both fear and sadness, but you won't understand unless you understand), and met some really nice people. Plus, I went to Memphis and I'd never been to Tennessee before then.

It almost didn't count. I drove straight from the airport to Jonesboro, unfortunately bypassing the National Civil Rights Museum, Beale Street, and all that famous barbecue in order to ensure that I'd reach my final destination during daylight hours.

I felt kinda bad about that so once I was done with my work, I headed straight towards the Tennessee border with the hopes that I'd have time to do something before catching my flight to NW Arkansas.

But what to do? Was there anything I could do in an hour and a half without risking being late for my flight? I still had a rental car to return off-site, after all.

Then I thought of it. I checked the GPS and it would work. Then I laughed. "I don't think I'm supposed to want to go here," I said to myself. As I later would think about dinner with the Duggars, I feared that I'd get looks of disdain and stick out like a sore thumb.

But I did it. It was predictably ostentatious and kinda creepy, but I did it.






Tennessee, check.





Friday, October 17, 2008

Flashback Friday: October 29, 2007

Four months old and fascinated with blowing raspberries. Let the spit-off begin!

Sound is a necessity with this one. Check out the cute little "hi" Playette gives in the beginning.




There was a really funny follow-up to this video, but it should be no surprise that all video uploading software hates me.

Here's another "Before & After" instead:


August 17, 2007
A moment of over-coordination.


August 17, 2008

Playing in the hotel tub during our weekend getaway to San Francisco. Let's just call this an interesting hair moment.


Thursday, October 16, 2008

Halfway Home

I'm in for a long day tomorrow and after being away from my family for several days, I didn't want to spend any of that precious time trying to upload photos or think of profound things to say (though, trust me, there is content). So. Here I am. I really should be sleeping. It's going to be a cold, dark drive to the airport.

Some thoughts:

I've been on 3 planes so far this trip and I have 3 more flights tomorrow.

It's also the middle of October. This is post 16/31.

Hooray for being halfway home.

I've been flying alone since I was 4 and all of the sudden now I'm developing a fear of flying.

Playette's Ortho must have taken his BeNiceToMyPatientsPill which led to him (finally) calling me back today. He gave me some suggestions regarding the next steps we should take for the whole clicking neck deal. I think we're in for an interesting ride.

I finally succumbed to the power of Sonic and had my coveted Fried Ice Cream Blast. I feel ill and have a horrendous headache.

I also had tater tots.

And a bacon cheeseburger.

Mmmmmmm.

Remind me of that when I complain about my weight.

There is a dirty rag in the drawer of my hotel dresser. I usually put away my clothes when I travel. Perhaps never again.

For future trips, I will make sure to take more time to find suitable lodging and not just pick the first place on TripAdvisor that doesn't have the following words in the first 3 comments: gross, nasty, disgusting.

If I were rich, screw shopping, I'd hire a driver. To me, that would be the ultimate indulgence.

John and Kate seem to have more kids than the Duggars. Except they don't. It just seems that way.

8 kids is a lot. 18 is...I don't even know.

I just remembered that the Duggars live in Arkansas, and right near here too. I should have stopped by for dinner. Do you think I would have blended in?

I'm actually mad that I just remembered that. I totally would have driven by the house. Not all stalker-y, but you know.

Not that I'm good at driving in NW Arkansas. I thought for sure I was a goner the other night when the GPS took me down 2(!) dirt roads. Not a street light for miles. Creeeeeepy.

I got off both dirt roads and would have driven hours out of the way if it had come to that.

I watch too much TLC.

I need sleep.

Sometimes the questions are complicated and the answers are simple.

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.

So the writer who breeds more words than he needs, is making a chore for the reader who reads.

Previous quotes are courtesy of Dr. Seuss. Smart guy.

Wednesday, October 15, 2008

ACDS

When I was in NY a few weeks ago, I couldn't resist visiting this one place.

No, not the Statue of Liberty, Central Park, or even my favorite restaurant.

I wanted to visit ACDS, The Association for Children with Down Syndrome.

I became familiar with ACDS via some of the parents who have children that attend. They participate in a Ds support forum with me and I've always noticed the positive comments regarding this school. Apparently, it's the only one like it in the country. [I'd love to know if there are others.]

The school describes itself the following way:

ACDS provides a continuum of year-round programs and services that include diagnostic evaluations and treatment, early intervention, day care/ nursery, preschool, special education and clinical services for children, from infancy to age 5; individualized residential services (IRA) for adults, age 21 and over; and evening and weekend recreation and socialization services for children, age 5 and over. The agency also provides nursery/day care programs in an integrated setting, with typically developing children.


I wasn't sure that a visit would be possible due to the type of schedule I was keeping, but as I was returning to my hotel after visiting Hofstra University, I recognized the exit for where my aunt and her family used to live and quickly jumped off of the expressway. For the next few minutes, I sat in the rental car, trying to pry the desired info from my Blackberry. Where exactly was this place? What was the phone number?

I found what I needed, called, and quickly was connected to a Social Worker. She encouraged me to come by, stating that she'd be glad to show me around. Fifteen minutes later, I pulled into the parking lot.

The first thing I noticed while getting out of the car at this wonderfully average-from-the-outside looking school was the Down syndrome awareness ribbon on the back of the vehicle next to mine. It made me feel welcome. I decided then that I wanted one.

Inside, I met the Social Worker at the front desk. She was very friendly and proceeded to show me down one hallway and up the next, all the while asking me questions about Playette and admiring the photos I shared.

The classrooms held children of differing ages, abilities, diagnoses, races. There was one room that was set up like the ultimate jungle gym in order to work on gross motor skills (PT) and another that made me wish I was of the size that would allow me to swing and touch and feel all that was at the children's disposal. My absolute favorite was the room that held what appeared to be a group of 3-year-olds. There was also a lady sitting at a piano. As she played, she sang a song that told each student to rise from their seat, one by one, and join her in playing when she called their name. When their part was done, they took their seat and then it was the next child's turn. So, so cute. I could have stood there watching them for the rest of the afternoon.

When we returned to the front desk, I thanked everyone for their hospitality. I noticed then that they selling the DsA ribbons as part of a fundraiser, so I bought one.

I often think about my daughter's future. I worry about her education and how the moving around that is inevitable in the lifestyle we lead will affect her in the long run. I want a school like ACDS for her everywhere we go and I know that's just not going to happen. I want her to reach her full potential and I want that bar to be kept high. I want her to defy all of the restrictions, stereotypes, and generalizations that society placed on her the moment she was diagnosed with Ds.

It's a lot that weighs on me. I'm scared of making the wrong decision. I already feel bad for not teaching her more and can only imagine the kind of pressure that I may place on an actual teacher. Will I be patient enough? Will Playette even perform in a classroom setting? As it is, she keeps her skills held pretty close.

I don't know if and when I'll get answers to these questions, but I did want to take a moment to commend those that are out there who have "our" kids' best interest at heart, like the staff at ACDS.

Thank you.

Tuesday, October 14, 2008

Addiction

That word right there? Addition? That's the reason why I usually don't buy small cups of warm beverages that cost $4 each. I'd be broke in no time.

So, yeah, I tend to do a good job at staying away, but evvvvvery once in a while, I get to fiending for just a lil taste and then I find myself in that place. You know the one.

When you're impatiently waiting in a line that wraps around the building.

When you're blocking traffic on a major thoroughfare trying to get to the drive through.

When you're scrounging for change on the floor of the car - and even in the sticky cup holder too - and are all, "How much is that with tax, again?"

When it seems perfectly logical to pay as much for 12 ounces of liquid as you do for a gallon of milk.

For me, this all started (again) on Saturday when the phamilies went to a local cafe and the sign said "pumpkin blah blah blah." I am a sucka for "pumpkin" anything so everything after that was just gravy (pumpkin gravy?). Oh, and these? Are so getting made soon.

But I digress.

So, I want the pumpkin latte, it appears. And they're out. Seriously? You dangle pumpkin goodness in front of me and then yank it back? A single tear fell as the barista came from behind the counter with her yellow chalk and wrote, every so deliberately, S-O-L-D-O-U-T.

Ack.

I tried again at the airport (different place, same drink), but I feared that I would miss my flight while waiting in the very long line (were they all fiending too?), so I walked to my gate.

Glory be! Another kiosk.

"Wait. Don't get too excited. This place is smaller than the other one. They probably don't have it," I told myself. But, ahhh, there it was, in the special placed reserved for seasonal favorites. Another long line, but this one was within sight of my gate so I waited. To pass the time, I read Cake Wrecks on my Blackberry and laughed like "the crazy lady in the coffee line."

Don't act like you've never seen her.

So, I'm in line and...

Raise your hands if you know where this is going.

But...but why?

"Can I get something started for you today?" asked the young woman with the cup in one hand and a black marker in the other.

Me: "Small, uh, oh, grande, um, pumkin. I want pumpkin."

Her: "Oh. We don't have that."

Rest of long line: "Grumble, grumble, crazy lady, grumble, MOVE."

Something catches my eye. "That salted caramel hot chocolate. Do I even want that?"

Her: "Mmhm, it's good."

I'm not convinced.

Do I walk away and forget I was ever here? Do I? DO I?

"Ok, I'll take it."
...
...
...

Glory be some more! Oh! Does Sprinkles make salted caramel cupcakes? Who came up with that idea? And how? Eh, who cares! Just give me more of the salty sweet goodness.

Sigh.

Monday, October 13, 2008

Reason, Season, Lifetime

Perhaps you've heard these words placed together before and the explanation that follows. I have...many years ago when it was making the rounds as a forward and sent to me via email. This time, though, I actually sought it out.

I've been reminded, since receiving Playette's dx, that not everyone is meant to stay in my life for the long haul. There are people I thought would always be around and they're just not. There are folks that I hadn't met until recently that I feel very close to. And there are people who love me for who I am and I couldn't pay enough to go away, ever.

Relationships are interesting. While it shouldn't be shocking, even though it is, you really find out who has your back when the unexpected happens. And it may not be because the person doesn't care about you. Maybe they don't know how to react, what to say, or how to say it. Or maybe you just never noticed before that pivotal moment when life as you knew it changed that your friend or family member was very focused on self and didn't really posses the ability to bring anything to the relationship when something emotionally draining happened to you.

Yeah, it sucks.

Jennifer Graf Groneberg wrote in Roadmap to Holland about a woman named Cathy who just couldn't handle her son Avery's dx with Ds. Recently, she posted about that on her blog. People had been asking her about what happened with Cathy and she provided an update. Here is the response I left to that post:

Have you ever seen that email? The one about relationships being for a reason, a season, or a lifetime?

I, too, have had some “Cathys” and it was so, so hard for me to handle at the one time in my life when I actually could have used a helping hand, an open heart, and a shoulder to cry on. I tried to remember then that some people just aren’t meant to be in my life forever. Did that ever hurt though!

And then, because I am who I am, I said, “Screw them. I’m moving across the country anyway.”

Sometimes that approach works too. ;-)

I’m a happier person now that I know that the people I surround myself with are there because they want to be.


So, yeah, that was what made me seek out this and re-read it. I thought I'd share it with you now.


A Reason, a Season, or a Lifetime

People come into your life for a reason, a season, or
a lifetime. When you figure out which one it is, you
will know what to do for each person.

When someone is in your life for a REASON . . . It is
usually to meet a need you have expressed. They have
come to assist you through a difficulty, to provide you
with guidance and support, to aid you physically,
emotionally, or spiritually. They may seem like a
godsend, and they are! They are there for the reason
you need them to be.

Then, without any wrong doing on your part, or at an
inconvenient time, this person will say or do something
to bring the relationship to an end.

Sometimes they die.
Sometimes they walk away.
Sometimes they act up and force you to take a stand.

What we must realize is that our need has been met, our
desire fulfilled, their work is done. The prayer you
sent up has been answered. And now it is time to move on.

When people come into your life for a SEASON . . .
Because your turn has come to share, grow, or learn.
They bring you an experience of peace, or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount
of joy. Believe it! It is real! But, only for a season.

LIFETIME relationships teach you lifetime lessons; things
you must build upon in order to have a solid emotional
foundation. Your job is to accept the lesson, love the
person, and put what you have learned to use in all
other relationships and areas of your life. It is said
that love is blind but friendship is clairvoyant.

Author Unknown



Sunday, October 12, 2008

Reading List

It was brought to my attention yesterday that I have amassed a bit of a collection of Ds-related reading material. (Yeah, for me, the more input, the better.) I'll post what I have here, just in case anyone was looking for something for themselves or the kiddos.

I ordered a lot of what I have from Woodbine House or Amazon. Looks like there's a sale and a contest going on. WooHoo!

I'm not saying that these are the only resources that are applicable to a Ds dx, but it helped me, as a new mama, to see children like my child in books, articles, on TV, etc. I think there are many books out there that do a good job in showing the acceptance of differences and one of my favorites features no children at all. I just hope this info is helpful to someone - including parents/teachers who might not be directly affected by Ds or children with special needs in general.

There's nothing wrong with sharing with kids that differences are normal and acceptance is expected. The worst that could happen is that we end up with more adults that are kind and compassionate. I'm all for that.

Book summaries are from the web sites. Italicized comments are my own.

Early Communication Skills for Children with Down Syndrome
This guide focuses on speech and language development from birth through the stage of making 3-word phases for children with Down syndrome. Thoroughly covers problem areas and treatments.

Fine Motor Skills for Children with Down Syndrome
Comprehensive resource on fine motor development for children with Down syndrome.

Gross Motor Skills in Children with Down Syndrome
This guide on gross motor skills describes and illustrates more than 100 easy-to-follow activities for parents and professionals to practice with infants and children from birth through age six.

Gifts
A poignant collection of personal stories by mothers describing the gifts that their child with Down syndrome has brought into their lives.
My absolute favorite. I devoured this book and immediately felt less alone in adjusting to Malea's dx in those early moments.

I Can, Can You?
This full-color board book features adorable babies and toddlers with Down syndrome eating spaghetti, sharing, playing ball, and more.
We read this one, though I think it would be great if more parents without a child with Ds had books like this one in their homes.

My Friend Isabelle
A story about what makes a friendship, featuring two friends, one who is a typically developing child and one who is a child with Down syndrome.
The companion Teacher's Guide is a great tool for teaching about differences and promoting tolerance both in and out of the classroom.
For the same price you can have the book AND the Teacher's Guide. I say, "Why not?" Just make sure to select the right one if that's what you want.

Babies With Down Syndrome: A New Parent's Guide
Guide for new parents who have welcomed a baby with Down syndrome into their lives. It covers these important areas: diagnosis; medical concerns & treatment; coping with your emotions; daily care; family life; early intervention; special education; and legal rights.
A lot of people (like me) don't like this book. Some do. Maybe I should pick it up again and take a look now that the dx isn't so fresh. It says right one the cover, "The first book that parents and family should read"...Eh, not so much.

Medical & Surgical Care for Children With Down Syndrome: A Guide for Parents
This guide eliminates the need for parents to scour medical texts and journals in search of information they can understand about their child's medical condition. Easy-to-read and well-organized, the book covers medical treatments and conditions-from heart disease to skin conditions-more common among children with Down syndrome.
I remember this one scaring the crap out of me. I believed that Playette would come down with every condition listed. Again, this one might be better when one is further along in the journey. Just my $.02.

We'll Paint the Octopus Red

As six-year-old Emma anticipates the birth of her new baby brother or sister, she vividly imagines all of the things they can do together. When the baby is born, her father tells her he's a boy, named Isaac, and he has Down syndrome.
Some folks don't like this one because the parents are sad, which I can understand. I think it really depends on what your kid(s) can handle and only the parents know that best. Why do I have it? Eh, I was on a roll ordering books. The sequel is The Best Worst Brother. I don't have that one yet.

Russ and the Firehouse
Russ, a five-year-old with Down syndrome, visits his uncle's firehouse and gets to help with the daily chores.

Russ and the Apple Tree Surprise

Russ longs for a swing set in his backyard instead of an apple tree. Apple trees are boring! Then he and his Dad pick apples, and Russ bakes a pie with his mother and grandmother. Russ soon discovers the apple tree has an extra surprise for him.
I've read Russ and the Almost Perfect Day, and I thought I had it, but maybe I just borrowed that one. Regardless, it's cute and I liked it.

Someone Special, Just Like You
Shows preschool disabled children actively playing and learning....In dispelling the fear of the unknown and showing our common needs for physical affection, community, skills, and independence, this book should do much to help the disabled child gain acceptance from other children.

Friends at School
A photo essay that shows pre-school children of mixed abilities busily working and playing at school, illustrating the true meaning of the word "inclusion."

Our Special Child: A Parent's Guide to Helping Children With Special Needs Reach Their Potential
I remember being drawn to this title. I haven't read it yet.

Differences in Common: Straight Talk on Mental Retardation, Down Syndrome, and Your Life
The author is the mother of a young adult with Down syndrome and activist for the rights of the disabled. She writes about the many issues which families of children with Down syndrome must face: public attitudes, family adjustment, education, mainstreaming, adolescence, and independence.
Another one I haven't read yet, but maybe I should check it out soon.

Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome
Montana wife and mother Groneberg traces in her tenderly moving account the life-changing realization after the premature birth of her twin boys that one of them, Avery, has Down syndrome.
My most recent read and I enjoyed it. I don't own this one because I got the bright idea to ask my library to order it so that it would be there for all. Check out the author's blog.

Not a book, but...

Down Syndrome: The First 18 Months DVD

Thirteen leading medical and developmental experts on Down syndrome, experienced parents, and infants and toddlers with Down syndrome are brought together in this DVD to inform, inspire, guide, and support.
I haven't watched it yet, but I will either on the plane or while I'm in AR. After that, I'd be glad to pass it along.

Saturday, October 11, 2008

Southern(ish) Comfort

I just wanted to take a moment to clue you all in on my upcoming travels. It's going to be a busy 3 weeks for me, but after that things will settle down considerably.

10/13-10/14
Jonesboro, AR (via Memphis)

10/14-10/16
Fayetteville, AR

10/20-10/22
Oklahoma City, Stillwater, and Norman, OK

10/25-10/27
Phoenix, AZ area

10/28-11/1
Topeka, KS area (via Kansas City)

We had a great day today. Swim lessons, sushi, and best of all - Sheree. Their family came to visit and we went to the aquarium, enjoyed the view, and, especially, one another's company. The kids were so adorable. We'll absolutely get together again soon.

With that in mind, please let me know, dear readers, if you will be in any of the places I listed above. I'd love to meet up.

We can go to Sonic or something.

Friday, October 10, 2008

Flashback Friday: An Assortment

I've been reading about babies rolling over for the first time and it reminded me of what a great time that was for me. Playette first rolled over at about 4 weeks and as a new mom I didn't know that was early at first. I remember checking online and reading books that didn't support that feat at all. I was so confused and thought I must have been losing it. I could tell people thought I was exaggerating. BD finally saw it too and then we caught it on video. It was her first real milestone-y type thing and we were so proud.

So, here she is. August 1, 2007.

Experiencing technical difficulties (of course we are - this is me, after all). Please check back later for the video.

Update: Trust me, it's cute. And there's rolling. The video and I? So not on speaking terms anymore. Come over my house and I'll show you the video. That's the best I can do.


And I just couldn't resist adding in a "Before & After" segment.

Before: "Look What We Did"



After: "Look What We Really Did!"



Thursday, October 9, 2008

10, 9, 8...

Am I the only person who took all day to realize that it's 10/9/8?

Hm. Let's see...what else?

Oh! Speaking of countdowns, the one to our next big vacation has begun.

We just made plans, like 2 minutes ago, to go here:



Woo and Hoo!!

And now we have to get the Littlest a passport. Boo on that. Have you see the rules these days? Boo some more.

That won't keep Playette from smiling though.



Wednesday, October 8, 2008

Awareness

Unless you're new here, you know that it's Down Syndrome Awareness Month.

You may already know that it's National Breast Cancer Awareness Month as well.

Both hold a special place in my heart. My mother had breast cancer and passed away in January of 1995 and Playette was diagnosed with Ds in June of 2007.

Someone asked me why they share the month. Honestly, I really don't know why both fall in October, but what I do know is that there's enough room (on my wrist, even) for both issues to be brought to light.



I have two more Ds Awareness bracelets that I received at the Buddy Walk. If you'd like one, please comment and I'll send one to you.

Tuesday, October 7, 2008

Morning Routine

Before I was a mom, I swore I would never let my child watch TV. I didn't want her to be like me, totally addicted to crap. (But, I'm saying though, if you saw the finale to "I Love Money", holla at me.)

Yeah, yeah, I know, things change. So when I'm getting ready for work and Playette is all over and into everything, I do let her watch Caillou. He's a cool little dude. And his mom is thick too. You know, "average sized" - walking around in her sweat pants and her baggy sweater. She's real. So at least I don't feel bad about that part. They even showed her in a bathing suit today. She is so my hero!

Anyway, so sometimes Playette watches Caillou, Curious George, and Signing Time. But that's it. Oh, and most stuff on ESPN, but that's all.

At least when she watches PBS, I make her sit in the Bear Chair. I like to think that she loves the Bear Chair.

Here's a glimpse:

What will that crazy Caillou do next?



I got things to do. I'm outta here.



I'm sorry, Bear Chair, I'll be back later. Promise!



Off to my next adventure.



Monday, October 6, 2008

Buddy Walk #1


To put it simply, I'm glad I went.

Playette and I were slow to leave the house and arrived about 45 minutes later than I planned. (So leaving 15 minutes before the start time when you live over an hour away doesn't work? Noted.) The good thing was that we arrived just as the announcement was being made for folks to line up to walk. I was so afraid we'd missed that part.

I had shamelessly begged online for a buddy for us to walk with, but failed to arrange for a meeting place or time. Good thing we went to the monthly family dinner a while back because we were recognized after not too long and attached ourselves to a team.


Yeah, a team. Who knew? Well, I had kinda heard about that, but still, I really had no idea. Matching t-shirts, banners, buttons, flags, wow. I felt bad for a second, but then got over it. We were there, after all.


I put on my Buddy Walk t-shirt and started to walk the 1-mile loop around the park. I thought it was beautiful. The lake, the...mountains? hills? big mounds of land were so majestic against the gray sky. It was a rainy morning and the white clouds that did exist really stood out. I don't know why I liked it. Maybe it was because I was in such a good mood. The atmosphere lent to that. There was total acceptance. Playette got lots of good attention. She was appreciated for just who she is there.


There was a bounce house, a slide, popcorn, cotton candy, snowcones, fire trucks, police cars, and music.

We danced (reggae nursery rhymes! - loved it!), we ate, we played instruments, met new friends. It was very cool.

I spent some of my time with a family who brought their newest addition, an adorable 2 week old baby boy. There was also quality time spent with with a very engaging thirteen year old young woman. Both of those conversations made me so glad that I came.


Click here for official photos.
(I found us on pages 1 and 8.)

I'll post a link to all of my photos later.

BD should be home soon!

Sunday, October 5, 2008

Sentimental Sunday

BD is out of town this weekend and I am learning to appreciate, more and more, the role he plays in this household. Now that Playette is up on her hands and knees, she's faster than ever. Add in some good ole fashioned curiosity and you've gone one tired mama. Don't forget the teething. Oh, the teething! It's gotta be teething right? That has to be what kept her up until she finally passed out at 10:30 last night, right? And why she keeps her fingers pushed to the sides of her mouth at all times, right? She's whiny and she's defiant and she's opinionated and...well, at least she'll eat crackers. That's what they do at this age, huh? Ugh. I need help.

As I feed the Queen her lunch and she continues to throw most everything (Ack! Not the fruit too! Here, have a cracker.) on the floor, I am reminded of something that I read online when the Littlest was about a month old. I was torturing educating myself one morning and decided to take a look at some forum that catered to women who had received a "Poor Prenatal Diagnosis" and went down a path different than my own. What I found there were the thoughts and feelings of many women who had found out that their child had Ds and either chose or were choosing to terminate.

BTW, so not a place for me or anyone in my same position
.


But, being that I knew no better at the time, I kept reading. One post said something along the lines of, "I want a child that throws their food because they're two, not because they don't know what food is."

Breath. Gone.

Oh, I cried and I cried that day. My husband and a friend told me to never, never go there again. And to stay off the internet already. (I listened to the first part.)

But, seriously, how ignorant of a statement was that? I didn't know then. For all I knew she was offering some sage advice and was much more fortunate than I because she followed it.

You see, that's what bothers me above most things - that there are people like that out there all over. They're at the daycare, they're at my job, they're at the grocery store, and at my friend's house for dinner. They're in the military spouse group with me and at my college reunion. They're "friends" with me on Facebook. Everywhere. And they're smiling in my face. That's what hurts. I don't know what I'm going to do the first time I hear that my child is the latest gossip.

I know that none of that is within my control. I know that I shouldn't waste my time thinking about that. I know.

So, yeah, she throws her sippy cup. I bought her this and it's working well today. The fruit? Eh. I literally live on a friggin' sand dune so she's just begging the ants to set up shop.

...
...
...

You know what, I really only came here to post a photo because I told myself that I have way too much to do today to spend time up on my soapbox. So much for that.

Anyway, here's the picture. It's my favorite from that day.